Number

Sue Baier

Mary Zimmeth Schomaker

BED NUMBER TEN

Sue Baier and Mary Zimmeth Schomaker

"It is a powerful book, which — thankfully —has a happy ending.

But the sadness outweighs the gladness, especially where Baier's

medical care is concerned. Perhaps BED NUMBER TEN should be

required reading at medical schools."

—Macon Telegraph and News

"Baier gives us a palpable sense of the course of the disease, the pain

endured, the depression and loneliness...sincere and honest..."

—The Boston Herald

"...if I or someone I care about were felled by Guillain-Barre Syn-

drome, BED NUMBER TEN is the handbook I'd recommend for

battling through the physical anguish, the emotional terror and the

mental strain of coming back from G.B.S "

—Des ISioines Register

"I cannot begin to explain the importance of this book for health

care professionals as well as the general public. As a nurse educator,

this book has had profound impact on me as I attempt to teach

students the art of caring for acute and chronically ill persons."

—RN, MS (Nursing College)

"The story of her illness is interesting reading and a reminder of how

fragile good health is and how cherished it should be."

—Sue Allison, United Press International

"Baier's chronicle of courage offers hope to victims of the cata-

strophic disease."

—Publishers Weekly

"...offers invaluable messages for anyone dealing with dependency,

suffering, loneliness, helplessness, or acute or chronic debilitating

diseases — in short, for anyone taking care of others. No one reading

this book will ever again regard the helpless or incommunicative

patient the same way."

—Richard M. Ratzan, M.D.,

The New England Journal of Medicine

Bed Number Ten

Sue Baier

Mary Zimmeth Schomaker

The Guillain-Barre Syndrome Foundation International

PO BOX 262

Wynnewood, PA 19096

Phone:(610)667-0131

Fax: (610) 667-7036

URL: www.webmast.com/gbs/

Email: gbint@ix.netcom.com

CRC Press

Boca Raton London New York Washington, D.C.

Portions of Bed Number Ten have appeared in

the December 1985 issue o/Good Housekeeping and

the February 1989 issue of Reader's Digest

Cover photograph provided by Professional Staffing Resources, Inc.

Library of Congress Cataloging-in-Publication Data

Baier, Sue.

Bed number ten.

Reprint. Originally published: New York : Holt,

Reinhart. and Winston, 1986.

ISBN 0-8493-4270-8

1. Baier, Sue—Health. 2. Polyradiculoneuritis—

Patients—United States—Biography. I. Schomaker,

Mary Zimmeth. II. Title. III. Title: Bed number 10.

RC416.B35A33 1989

362.T9687 [BJ 89-835

CIP

This book contains information obtained from authentic and highly regarded sources. Reprinted

material is quoted with permission, and sources are indicated. A wide variety of references are

listed. Reasonable efforts have been made to publish reliable data and information, but the author

and the publisher cannot assume responsibility for the validity of all materials or for the conse-

quences of their use.

Neither this book nor any part may be reproduced or transmitted in any form or by any means,

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The consent of CRC Press LLC does not extend to copying for general distribution, for promotion,

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Direct all inquiries to CRC Press LLC, 2000 N.W. Corporate Blvd., Boca Raton, Florida 33431.

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and are used only for identification and explanation, without intent to infringe.

Visit the CRC Web site at www.crcpress.com

No claim to original U.S. Government works

International Standard Book Number 0-8493-4270-8

Library of Congress Card Number 89-835

Printed in the United States of America 10 11 12 13 14 15

Printed on acid-free paper

The names of the hospital and all medical personnel have

been changed to protect those who were less than kind.

This is dedicated to all who cared, so they will

know how much they did. And to those who

may be called upon to care, so they will

know how much they can do.

SHUTTING

DOWN

My toes tingled. Funny. Nothing too unusual. There was no

time for concern that Monday morning of December 1,1980. I

had to get moving. I was in charge of the volunteer mothers at

my daughter Elizabeth's high school, and this was my day to be

on duty.

As Bill shaved, I brushed my hair and slipped on my robe

before going down to make breakfast. What could make my

toes tingle? Certainly nothing to worry about, I assured myself.

Halfway down the stairs I met Elizabeth, who was still carry-

ing a cup of coffee as she hurried upstairs to dress for school.

This was the synchronized routine we'd fallen into—very com-

fortable for our early-morning schedules. In the kitchen, I re-

moved the orange-juice pitcher from the refrigerator and

poured a glass for Bill and then one for me. From the cupboard I

removed bowls and our usual box of cereal. Then the bread

went into the toaster. As I watched the coils of the toaster turn

red, I reached for the first sip of my juice, all in the easy rhythm

of habit.

I was startled when I tasted the orange juice. It burned my

tongue—and my lips. How odd. I knew it was fresh. The toast

popped up and I buttered it. Again the rhythm took over as I

carried the bowls, the cereal and milk, the toast, and Bill's juice

to the table. I took another drink of orange juice. Again the

burning sensation. It had to be my imagination; I'd mixed that

juice just last night. It had to be all right. I finished the contents

in a single gulp as I looked at the clock. Ten minutes to seven,

right on schedule. I walked toward the front of the house just as

Elizabeth came down the stairs, ready for her car pool. With a

quick kiss on my cheek, she hurried out the door to the waiting

car. "Have a good day," I called to her. And, as always, I stood at

the door for a moment to wave good-bye. I loved watching her

4 BED NUMBER TEN

with her friends—all that happy enthusiasm. I closed the door

just as Bill came down the stairs, and we walked back to the

breakfast table.

I watched Bill's face as he drank his juice. "Is it all right?" I

asked. He glanced at me, puzzled, so I added, "It seemed to burn

my tongue and lips when I drank mine."

Bill looked at his glass and then at me. "Mine's OK. Tastes

fine." I said nothing but decided to try my cereal. It tasted

normal. I was relieved.

Silently, I ate my toast, aware that Bill was looking at me

occasionally with his are-you-all-right expression. Neither of us

said anything, but of course, I was all right. Perhaps I had

imagined the burning orange juice. I felt the tingling in my toes

again, and maybe in my fingers, too. But I said nothing.

Bill finished his breakfast and got up to leave. I followed him

out the back door and watched him back the car out of the

garage and down the long driveway. It seemed important today

that everything be normal, just like always. As he maneuvered

onto the street, I waved, savoring just for a moment his return-

ing wave. I wished it weren't Monday. Today especially, what

with the long Thanksgiving weekend just finished, I wondered

why I'd ever volunteered for Mondays.

It was five after seven when I glanced at the clock. No time for

lingering. I hurried back into the kitchen, gathered up our dishes

and put them into the dishwasher, then ran upstairs to dress.

As I checked the mirror one last time, I remembered the

invitations. Mustn't forget those, I told myself. While Katherine

had been home from Vanderbilt over Thanksgiving, she, Eliz-

abeth, and I made out the guest list and addressed sixty-five

invitations for their annual holiday buffet. The anticipation of

entertaining all their friends made planning this event special to

the girls, and doubly so for me. Since this was Katherine's first

year away from home—way up in Nashville—we had to do all

the planning while she was home. We discussed the details, and

Elizabeth and I even set aside all the recipes for the menu. On my

way past the desk, I remembered to gather up the stack of

invitations.

BED NUMBER TEN 5

Houston's morning air was balmy as I walked to the garage.

When I put my foot on the car accelerator, the tingling was still

there.

The gas gauge was low, so I decided to stop and have the tank

filled before going on to the school. Tony was standing beside

the pumps as I drove in. Just seeing him was brightening this

morning. He had tended our cars for years and was always

pleasant. "Hi. How're you doin'?" he asked. Of course I told

him I was fine and inquired about his Thanksgiving. I could hear

him talking in his usual chatty manner, but it was hard for me to

concentrate. He asked if Katherine had come home. I nodded

and smiled, rubbing my fingers absently, trying to stop the

tingling. And I wiggled my toes.

He took my credit card and wrote up the charge. As I signed

the charge slip, the pen felt a little awkward in my hand. Funny, I

thought. "You have a nice day now," Tony said with his custom-

ary pleasantness. I forced a smile and nodded as I started up the

car and drove away, waving my good-bye.

Houston's morning-rush-hour traffic is always distracting, but

this morning I welcomed the distraction. I should have turned

onto the street that passed the post office and mailed the invita-

tions, but I decided against it. I don't feel like stopping this

morning, I thought, surprising myself with the uncustomary

procrastination. But I was not feeling just right, so I drove on. I

straightened the pile of envelopes and assured myself I would

mail them on the way home from the school.

Traffic was picking up, but today I was thankful for all the

cars. It was good having people around. This was the route used

by many of the students and faculty who lived in our neigh-

borhood. I glanced at other drivers, searching for someone I

knew. A familiar face would be reassuring. But all the cars were

driven by strangers.

The parking lot of Robert E. Lee High School was half-filled

with teachers' and students' cars as I drove in, but no one was

arriving at just this moment. I looked at my watch. Seven-forty-

five. I was right on time. I liked being ahead of the student rush.

As I walked the long hall toward the main office, the corridor

6 BED NUMBER TEN

seemed darker than usual, although the lights were all on. And

the hall appeared so much longer. I could hear voices, somewhat

muffled, but the building felt empty.

It was a relief to walk into the familiar main office. At least

there were people, voices of welcome.

"Hi, Sue. How was your weekend?" one asked. Another

wondered if Katherine had come home. Everyone knew both

girls. Elizabeth was still in their midst, and they often asked

about their recent graduate, Katherine. My answers were pleas-

ant, a bit forced, almost announcements: It had been a very

special holiday; Katherine was fine; she loved Vanderbilt; we

were all happy to have the nice, long weekend together.

I was relieved when I could finally sit down at the desk

reserved for volunteers and search for my name tag in the file

box. I struggled with the clip. Awkward gadget. It just didn't

want to go on right today. Faculty members hurried in and out

of the office, signing in and then rushing off to homerooms. I

smiled at each of them—they had become my friends over the

years. But I was grateful this morning that they were all too

rushed for conversation. Students came and went. Thank good-

ness the secretaries were at the counter and able to keep up with

their requests. I glanced toward the window; it had started to

rain. Suddenly I felt so tired, weak. Nothing specific, just general

weakness. Perhaps it was the weather—or the weekend was

catching up with me.

My job was to take all incoming calls. I hoped it would be a

light morning. Class bells rang; activity moved away from the

front counter; chaos subsided. I wasn't the only one breathing a

sigh of relief. But the morning rush usually stimulated me, rather

than wearing me out. The tingling in my toes had become

noticeably more persistent. And in my fingers. Still, there wasn't

much time for dwelling on such irritations. The phone kept up a

steady ring—calls to transfer, informational inquiries, messages

to note. Writing became more difficult. I shouldn't be so tired, I

kept telling myself. I had slept well enough the night before.

By ten o'clock I had been able to ignore how I felt. Then came

a call for one of the teachers. She would be on break in the

faculty lounge, probably waiting for the call. Forcing myself to

BED NUMBER TEN 7

my feet, I trudged down the hall to the lounge. I stood back to

allow her to run on ahead to answer the waiting phone call. As I

turned to walk back to the office, I knew for sure that something

was wrong with me.

With real effort now, I forced myself back to the office and my

desk. Wanda, a secretary in the principal's office, brought me a

cup of coffee, as she always did at this time of morning. The

expression on my face must have given me away. I tried not to

alarm her, but I was not succeeding. I needed more than a cup of

coffee this morning.

My mind raced for the name of a doctor. We didn't have a

family physician—just the pediatrician who had cared for both

girls and continued taking care of all four of us. She was like a

member of our family. But no, not for this. Then there was my

gynecologist. . . . But today I needed someone else. Finally I

thought of my mother's internist, Dr. Lohmann. His office was

nearby and at least he knew me, having seen me so often with

Mother.

I called Bill and was relieved when he answered the phone. He

might have been out of the office. "I'm sorry to bother you, but I

feel like something is wrong with me. I need to see a doctor."

He seemed to understand that it was serious. Otherwise, I

wouldn't have disturbed him. Within minutes Bill pulled up in

front of the school. He had called Dr. Lohmann, who agreed to

see me immediately. I was relieved just to see Bill. Wanda

insisted on walking me to the door and then partway down the

steps until Bill reached me and helped me the rest of the way

down and into the car.

I remembered Dr. Lohmann as being kind and sensitive with

Mother, and again I felt relief. He saw me immediately and

examined me thoroughly, especially testing my reflexes. Every-

thing checked out as normal. He was puzzled. My toes and

fingers still tingled, and a slight weakness now affected my

walking. And then there was that overall feeling that something

wasn't right. I couldn't put a finger on it, or even describe it to

the doctor. Bill mentioned that I'd had an intestinal virus the

week before. That finally gave Dr. Lohmann a clue. Perhaps, he

concluded, it was dehydration or an imbalance of electrolytes.

8 BED NUMBER TEN

"You just go home," he said, "and rest and drink lots of

Gatorade. And eat bananas." Awful, I thought. I don't like

Gatorade! "And if things aren't better by Thursday, we'll do

some blood work."

Bill helped me back into the car. I felt unsatisfied without solid

answers and wished it would all go away.

My mother lived close by, so I went to her apartment to spend

the afternoon, rather than have Bill drive me all the way home.

Bill could get back to the office easily and pick me up on his way

home from work. Of course, Mother was distressed at my not

feeling well, but I assured her I was just fine—merely suffering a

little carryover from the flu. If only I could convince myself. We

distracted ourselves with talk of the past weekend. Mother had

been with us for Thanksgiving day and she was most anxious to

hear all about the remainder of Katherine's visit. I loved the

telling nearly as much as she enjoyed hearing about it.

I called the school and left a message for Elizabeth to take my

car home—and to be sure to drop the party invitations at the

post office. Then I rested, just as the doctor ordered.

That night Bill and Elizabeth decided to make dinner. They

urged me to continue resting, but it was hard to stay away from

the kitchen, so I elected myself supervisor. The evening passed

quickly. Normally. Dinner, schoolwork for Elizabeth, and tele-

vision and reading the evening paper for Bill and me. Then bed. I

had no difficulty negotiating the stairs, though the bed was most

welcome. I lay there waiting for Bill, staring at the ceiling,

hoping I would wake up the next morning and be fine. All the

tingling would be gone, I was sure. My weekly 7:30 A.M. tennis

game with Janice was set for tomorrow. That would get me back

into shape again, I decided. Sleep came easily.

Bill's alarm emitted its early-morning call. Sleepily, I shuffled to

the bathroom for my customary first-thing drink of water. The

shock jolted me fully awake. I couldn't swallow!

I was standing at the closet door, trying to concentrate on what

to wear. I could hear Bill talking on the phone to Dr. Lohmann.

"Yes," he was saying, "we can be there in an hour or better." I

tried to turn my attention back to the closet.

"He'll meet us at Gulfland Hospital, Sue." Bill was standing

beside me now. I nodded, not wanting to look at his face and see

that apprehensive expression.

"I can't decide what to wear," I said. I felt silly after I let go of

the words.

"Just put on anything. It doesn't matter." He was not being

harsh, but concern put an extra edge on his voice.

"Bill, please, just go downstairs and fix yourself a piece of

toast while I get dressed."

He turned and walked to the door, muttering, "I told him

we'd be there in an hour." I understand, Bill! And the traffic will

be slow, too. I understand. I focused in on the closet and chose a

jeans skirt, a plaid blouse, and my penny-loafers.

At the mirror I again tried to swallow. Nothing. Fear was

gripping me, but I forced my attention to the image in the mirror

and carefully applied full makeup.

It occurred to me that Dr. Lohmann probably would put me

in the hospital overnight for some tests, so I removed a small

overnight case from the closet. What do I need for one night in

the hospital? I wondered. It had been a long time since I'd had to

do this.

Bill returned to the bedroom as I packed. "Don't worry. If you

forget anything, I can bring it to you." His words jarred my

mental checklist and I suddenly remembered the date. It was

past the first of the month.

"My goodness, it's time to pay bills," I said. "I missed yester-

day. I'll have to do it today." I sent Bill to get the checkbook and

10 BED NUMBER TEN

the stack of bills. While he was gone, I remembered my tennis

game with Janice. Calling her was his next assignment. Finally I

latched the small bag and stood back for Bill to take it. At the

bedroom door, I turned back again. The room was warm and

comfortable. I felt a sudden sadness at having to leave. I just

didn't seem ready.

Surely it couldn't have been a premonition that I would not

see this room again for some eleven months.

It was nine o'clock when we arrived at the hospital. Dr.

Lohmann had arranged for me to be admitted immediately. We

gave the admitting clerk the customary information, and she

handed me the form to sign. My hand held the pen poised to

write, but I couldn't sign my name. Once again the fear surfaced.

I handed the pen to Bill. What's happening to me, I pleaded

silently. What's happening to my body? The only response was

the clattering noises of a workman down the hallway, mocking

my questions.

An attendant brought a wheelchair. I wanted to walk up to

the room but was persuaded to accept the ride. Even though my

mother had been a patient here, today everything seemed

strange. On the way to the elevator, I saw a nurse who worked

for an orthopedist we had used over the years. A familiar face! I

felt a flutter of excitement. At least there was one familiar face at

the hospital now.

Nurses and technicians swarmed into my room. I was mea-

sured and weighed. Thermometers, blood-pressure cuffs, sy-

ringes drawing blood. Then, as suddenly as it began, it ended,

and the room was quiet. Bill and I smiled at one another reas-

suringly, but there was nothing to say. I was thankful that there

was no one in the other bed. It gave us the privacy of a single

room. We checked out the accommodations—closets, plumb-

ing, the view from the window—perhaps trying to sound more

like seasoned apartment hunters than a frightened patient and a

worried spouse.

I was becoming aware of a general feeling of weakness and

BED NUMBER TEN 11

fatigue, so I slipped into my pajamas and lay on the bed. Even a

hospital bed felt good at that moment. I knew I couldn't sleep,

but it was a relief just to close my eyes for a few minutes. Bill

alternately sat reading a magazine, paced into the hallway and

back, and looked out of the window. I wanted to be home again.

I was sitting up in bed when Dr. Lohmann finally arrived at

eleven. He had been waiting for the lab reports. "Well, the blood

work is clear," he said. He seemed to be speaking to Bill, rather

than to me. "I gave Sue a physical examination yesterday, and

she checked out fine. And now we have no clues from today's lab

work. I can do nothing else for her, so I am calling in a neu-

rologist." I tried to comprehend his words. What did he mean,

he couldn't do anything else for me? "Dr. Muenkel will be in

later today to see her. He's a top neurologist, and I'm sure he will

be able to find the answers for you." Abruptly he left.

Bill and I sat in silence. I wanted to say, "I truly am sick. I am.

Something is really wrong." But I was sure Bill knew that even

without my saying anything.

A nurse brought in a tray of soft foods. I was hungry, but still I

could not swallow.

Throughout the afternoon, their efforts to get me to eat

continued. Juices, gelatin, ice cream. It was useless; nothing

would go down. They told me I needed fluids, but I already

knew that. Why couldn't I swallow?

Partly to provide distraction, I attacked the pile of bills. The

family finances had always been my responsibility, and I was

fastidious about the assignment. But now I couldn't write. I

turned the ledger-style checkbook over to Bill, explaining each

statement to him so he could write the checks and total the

balance. I made a point of telling him the details of each account

and other things he should know, such as when mortgage

payments were due, as well as all the other family business.

Making sure he understood everything became a compulsion. I

sensed I had to inform him about all of it today.

Occasionally one of us would note the time. Still no Dr.

Muenkel. When was he coming? It was so frustrating. Some-

times I wondered if I were merely imagining all that I could feel

12 BED NUMBER TEN

going on in my body. The increasing weakness, the numbness

attacking my feet and hands, my inability to swallow. But the

symptoms were so frightening that I knew they were real. And

because it was happening to me, I felt that this was an

emergency, that I needed medical attention. But still no Dr.

Muenkel—or any other doctor.

I told Bill about my schedule for the week. Tomorrow was the

monthly meeting of my literature club. I was president, and the

vice president had to be notified that I could not be there. Then

there was the recommendation letter to write for a prospective

member, listing her qualifications to join the group. I dictated

from notes I'd remembered to bring along, and Bill wrote out

the letter. This, I instructed him, must be dropped off at the vice

president's home, along with the gavel and the members' name

tags. It was part of my position, and I felt very responsible that it

all be done. Of course, Bill agreed.

Also, I had made a luncheon date for Friday. Bill would have

to call Bess and cancel that. All of these instructions were

carefully noted in Bill's diary. He had carried a small daily

logbook in his pocket for years. Each month he replaced it with

a new one and filed the old one in his desk drawer. He recorded

everything of significance throughout the day in the appropriate

hourly time slot. These notes had always been an important part

of Bill's research work, and over the years, he had extended the

notations to cover his personal life as well. When Dr. Lohmann

left, Bill instinctively reached for his diary and entered the basic

information. Now he was listing more of my instructions, and it

was comforting for me to watch him write—and to know that

everything would be accomplished.

In spite of not being able to consume food or fluids, I found

myself needing to make frequent trips to the bathroom. Nerves,

I presumed. As the afternoon wore on, the need arose more

often, and I became weaker with each trip. Eventually, Bill had

to help me walk, then to lower me onto the seat and lift me up

again. Despite our years together, it was humiliating to need this

kind of help from my husband. Neither of us should have to go

through this.

BED NUMBER TEN 13

Still no Dr. Muenkel. Nothing but occasional visits from the

nursing staff. The dinner tray came and had to be returned

untouched. Bill continued to write in his diary, listing phone

numbers of people he should call if I was required to stay any

length of time in the hospital, reminding himself of things to do:

to call Katherine, to have some repairs done on the car, to

change the cat's litter box.

It was seven o'clock when Dr. Muenkel finally arrived. Now,

surely, we would get answers. He checked my reflexes, which he

said were good. And he did some pinpricking—without com-

ment. "Well," he began, "at this point I can only tell you that it is

probably one of three things." He stopped for a deep breath,

more of a sigh. I was sure he could hear my heart pounding. "It

could be multiple sclerosis, myasthenia gravis, or Guillain-Barre

syndrome. I think we can quite safely rule out myasthenia gravis

at this point." All three sounded frightening. "We'll just have to

wait until we do a spinal tap tomorrow, and then we'll know."

Tomorrow! The words stung me with alarm. "I'm sorry, but

that's about all I can tell you at this point."

Panic was overpowering me, but I forced myself to ask calmly

about the diseases he had just suggested. Dr. Muenkel smiled,

trying to comfort me. "Well, let's just wait until we see what we

have before worrying about that." As he spoke, he moved

toward the door and then bid us good night. He left before we

could ask anything more. But it didn't seem to matter just then.

What questions could we have asked? I was consumed by

disappointment and fear of the unknown.

Bill and I stared off in different directions. I grappled with the

names Dr. Muenkel had mentioned, repeating the words to

myself. They all sounded terrifying. The hospital room had

become cold and stark. I looked out into the night and yearned

to go home. Oh, God, I want to go home! Bill was writing in his

pocket diary. I could well imagine what he was writing: Dr.

Muenkel says it's M.S. or Guillain-Barre. Probably not my-

asthenia gravis.

"How do you spell Guillain-Barre?" I asked—more for some-

thing to say than for a desire for information.

14 BED NUMBER TEN

"I can only guess." Bill put the diary back in his pocket and

came over to the bed. He held me, and we both fought back

tears. "It'll be all right, Sue. I know it will." I struggled to believe

Bill and to draw from him the strength he always gave me.

Soon after Dr. Muenkel left, a young man appeared, identifying

himself as James from respiratory therapy. I didn't know why he

was here, but there was something about his manner that put me

at ease for the first time in this long, torturous day. He explained

only that he wanted to take some measurements, so Bill helped

me stand beside the bed, and James measured my breathing

capacity. It was actually a comfort to have someone doing

something about whatever my illness was.

The evening wore on into nighttime. I wanted to send Bill

home so he could rest; he looked so tired and strained. He had

missed work today, and I knew that he'd have to do twice as

much tomorrow to catch up. But I was afraid to have him leave.

Thank goodness, we were at a hospital located between home

and his office, rather than downtown or at the medical center. At

least here he could arrange quick visits to see me on his way

home from work. Such a small consolation became important.

At ten-thirty the head nurse came into the room. She looked

at Bill, and I was sure she was going to tell him to go. Her voice

was measured. "I think, Mr. Baier, that we had better take your

wife to ICU."

"Intensive care!" I could hardly speak. "No, I don't need

intensive care." Terrified, I looked from the nurse to Bill for

concurrence.

"Why?" Bill asked her.

I could hear the nurse speaking as she answered Bill, but the

words swirled incoherently. Tell her, Bill, that I must stay here,

in this room, until the spinal tap in the morning. Then I'll be

going home.

Bill came to my side and spoke softly, gently. "I think you'd

better go, Sue."

"No, I don't want to. If I go there, you can't stay with me."

His voice was barely a whisper. "You have to, Sue." His eyes

BED NUMBER TEN 15

looked sadly into mine. "You haven't been able to eat or drink

all day. You know you're getting weaker. I can't leave you like

this. You must go so they can take care of you."

The nurse left briefly and returned with a wheelchair. A huge,

hard mass formed in my stomach as we packed up my things.

Then we were on our way through the blur of now-quiet halls,

down in the elevator, and into a long corridor, filled with

foreboding.

Bill held open the door as the nurse pushed my wheelchair

into the intensive care unit. While she handed my chart to an

ICU nurse, I looked around the room. It was even more frighten-

ing than I had imagined. There were a dozen or so beds in small,

partitioned, three-sided cubicles along the outside walls of a

large room. The fourth side of each cubicle opened into the main

room, where the nursing station was located. Most of the beds

were occupied with patients wired to all manner of machinery

and bottles. I recoiled at the sight and let my gaze fall to the floor.

But I couldn't shut out the wheezing sounds of respirators. I

wanted to run, but I knew I wasn't able to walk, let alone run. I

prayed to be gone from this place. Instead, I was wheeled

toward a bed. Printed on the back wall behind it was the number

ten.

I was welcomed to Bed Number Ten by a young man who

introduced himself as Bruce. "I'll be your nurse for the rest of

this shift. I hope you find this bed satisfactory," he said as he

helped me onto the bed. "According to your chart, you'll prob-

ably be with us for at least three months."

I was too stunned to respond. What was he saying? Three

months? Horror churned my stomach. No, that could not be.

He had to be wrong. I couldn't stay here in this awful place for

three months. Besides, Christmas was coming. I had too many

things to do. I can't be in a hospital. Not now. Not here.

I was still sitting on the side of the bed, battling with my

thoughts, when I was handed a hospital gown. "You'll have to

wear a gown in here," Bruce said. "You can put it on now, if you

don't mind." I do mind, I thought. I mind very much. Drawing a

curtain across the open end of my cubicle, he walked out toward

16 BED NUMBER TEN

the nursing station, where Bill was waiting. I could hear him

telling Bill, "You can take home her pajamas and everything

else. All she'll need here is her toothbrush."

As I struggled into the gown, I began to notice a steady

drainage from my nose. When Bruce returned, I asked him for

some tissues, which he handed me. He reached toward a cart

behind him for some kind of apparatus attached to a plastic

tube, told me to lie down, and then pushed the tube down my

throat. I gagged. Immediately he pulled it out again. "Get used

to that because you're going to have a lot of that while you're

here."

When I got my breath back, I asked him what he had done.

"Nothing, yet," he replied. "I just want you to know what we'll

be doing when your condition gets worse."

This can't really be happening, I thought. It has to be a

nightmare. But when the curtain was pulled back and Bill was

allowed to return to my bedside, I realized it wasn't. His face

looked so sad and frightened as he grasped my hand, trying to

give me courage. Bruce was there again, telling me I had to take

off my rings.

"No, please," I begged. "Not my wedding ring. I've never

taken it off. Can't you just tape it to my hand?"

"No. It has to go," Bruce answered flatly.

I fought tears as I tugged to pull off the engagement and

wedding rings. My fingers were almost nonfunctioning, but the

anger made them work. I could not look at my husband when I

handed him the rings. As Bill gathered up my pajamas and robe,

Bruce gave him a paper bag to put them into and then asked him

to leave.

I was terrified, so frightened of letting go of Bill. He was

security. Everything else seemed so abrupt, so unreal. I clung to

his hand. We were both trying to be strong. I was not succeed-

ing. Finally, I knew I had to let go, and I watched Bill gather up

my case and the paper bag. He kissed me—the way one does at a

train station or airport. This was too public a place for either of

us. He took only a few steps, then turned back just before he

moved out of sight. One last look and then he was gone. Utter

BED NUMBER TEN 17

despair; total abandonment. Everything in the world was gone

with him.

Only Bruce was still there. Plus the wheezing machines, and

the dozen pallid patients I could not see but remembered all too

vividly. And other nurses whom I did not know, including the

new shift that was just coming on duty. Even worse than the

tears, my nose was now discharging uncontrollably. I apolo-

gized to Bruce for using so many tissues.

"December 3: Guillain-Barre confirmed. 6 P.M. respirator."

—from Bill's diary

The clock on the wall opposite my bed stared back its silent

message: six o'clock. Was it morning or night? Did it matter?

Yes, it did. It must be morning. Six in the morning was a time for

getting up, for things to happen. For me to make them happen. I

quickly glanced around the room. Nothing had changed. I was

still in this miserable place, intensive care. My nose had stopped

dribbling, but now saliva was running out of the sides of my

mouth. As I turned my head slightly to the side, it gushed from

my mouth, down the side of my face and neck, onto the bed. I

shuddered with revulsion as I tried to swab away the mess. My

hands would not work, but with the little strength left in my

arms, I stuffed a tissue into the offensive area. I wanted to call

for help but was too embarrassed. I wasn't even sure I still had a

voice. The entire unit echoed the sounds of voices, of the clatter-

ing of metallic equipment that I could not see. Nor did I wish to.

A night-shift nurse, Gwenn, came alongside the bed, wiped

my face, wrapped my fingers around a fresh wad of tissues, and

placed my hand next to my mouth. I apologized weakly for

using so many—and for the mess. It was humiliating. Although

Gwenn had appeared several times during the night, she usually

seemed totally baffled about what to do for me. I was sure she

would rather I were unconscious. She wouldn't have to talk to a

comatose patient, and Gwenn left no doubt in my mind that she

preferred not having to speak to me. She wasn't unkind. Just

aloof, remote.

I studied my tiny room. Already I thought of it as my room,

even though the staff referred to it simply as Number Ten. I

didn't want to be here and did not plan to stay, but while I was

BED NUMBER TEN 19

here, I needed to define this space as mine—my area. Extending

just beyond the foot of the bed on either side of me were walls—

about three feet from the right side of the bed, four feet from the

left. I could not see much of the third wall behind my bed, except

to make out the number over my head. The fourth side, at my

feet, was open to the nursing station, the hub of the intensive

care unit. On each side wall was a large glass window that

opened into the next cubicle. On my right, a full-length curtain

was drawn across the window and to the end of the wall. I

caught only glimpses of the corner of that window as nurses

swished past the curtain, and it moved with them. This was the

curtain that Bruce had pulled around the open side at the foot of

my bed while I put on my hospital gown last night.

To my left, a curtain was drawn across the window from in-

side the next compartment. I wished that there were a curtain on

my side of the wall, too. The fact that someone else had control

over uncovering that window left me feeling vulnerable. During

the night I had heard the patient in that bed—was that Number

Nine or Number Eleven?—being referred to as John. I did not

like the idea that John could pull back the curtain from my win-

dow. Then I remembered hearing John moaning during the

night. 1 supposed that John was not going to be up and around,

peering at me, any more than I would be getting up and chang-

ing anything. Nevertheless, I tugged awkwardly at the sheet to

be sure I was fully covered. These skimpy hospital gowns did not

provide much protection for my six-foot-long body.

Nurses moved past my room frequently. I counted three

besides Gwenn. But they never stopped, or even looked in at me.

Was I the exclusive property of Gwenn? She paused at the foot

of the bed every little while and looked at me, but if I said

nothing, she did not acknowledge me or inquire if I needed any-

thing. I rarely asked for anything. I didn't want to be a bother.

I studied the curtain next to my bed. It was cream colored, like

the walls. At least it looked freshly laundered. There was a brief

feeling of security in looking at that curtain. Nothing else here

made me feel secure.

Across from the foot of my bed, in the center of the unit, stood

20 BED NUMBER TEN

the nursing station, a room within the room. The wall facing me,

on which hung the large, round clock, radiated with yellow

paint, a rather bright citrus shade. There must be a better color, I

thought. A large window, like those at my sides, looked into the

station. Or, more precisely, looked out from the station. Nurses

moved toward the window occasionally, checking their patients.

A few feet to the left of the window was an open door through

which I could see desk space for two nurses. Between the door

and the window was the clock. Had the hands stopped al-

together, or was it really only six-fifteen?

A bright fluorescent panel in the ceiling above the clock

illuminated the area. The entire unit was lighted by these panels,

spaced periodically between the large, white, acoustical ceiling

tiles that all hospitals seem to use. In fact, another light panel

hovered directly over my bed, but it was turned off when not

needed. The other—between the clock and my cubicle—burned

all night.

I stretched to look at a small exterior window over a bed

across the room. It was still dark outside. Of course, it would be.

This was December, and the days were short. This was De-

cember and I could not be in the hospital! I had just barely

started doing the Christmas shopping. There was too much to

do for me to waste even a day. Besides, I can recuperate at home

just as well as here. Then next week I can get the shopping done

and the decorating started. Once again the clock distracted me.

It was nearing six-thirty. Bill had promised to be here by seven-

thirty, just over an hour. Please come soon, Bill. Please hurry.

Fear surged through me as I tried to roll over onto my side.

My body did not have enough strength. Gwenn walked past the

bed again, so I summoned the courage to ask her for help.

Gently, but passively, she turned me and put a fresh wad of

tissues beside my mouth. I thanked her and again apologized

about the tissues and the mess. My stomach churned. I wished

she at least could have smiled. Even she must be finding my mess

disgusting. Tears coursed a trail to the upper edges of the tissue

wad and were blotted effortlessly.

New voices rang through the unit. The morning shift was

BED NUMBER TEN 21

arriving. With one nurse from the night shift, the new group

made rounds, standing at the foot of each bed to be familiarized

with that patient's condition. When they came to my bed, I

listened carefully.

"Probable Guillain-Barre," Gwenn reported with a pas-

siveness that made me feel invisible—or dead. "Lumbar punc-

ture scheduled for seven-thirty." My heart pounded. The spinal

tap! I forgot that was coming. Dear God, please help me. I had

heard such terrible things about those. The nurse was continu-

ing with all kinds of medical jargon and letter combinations,

alphabets that shut out the patient. I wanted to tell her that I

couldn't have a spinal tap at seven-thirty because Bill would be

here by then. And I had questions to ask. But the group moved

on quickly to the next bed. Their voices were abstract now.

Alphabets for another patient. But what about me? What was

happening to me? What was this Guillain-Barre? And when

were they going to give me some miracle medicine to cure it?

Very shortly, a new nurse named Harriet came to my bedside,

rolling a small piece of machinery. "That discharge looks mis-

erably uncomfortable for you," she said, sounding sympathetic.

She actually looked at me and knew I was alive! "Do you think

you can hold this?" She held up a plastic suction apparatus, the

kind dentists use. I nodded. Her smile was genuine and most

welcome. She hooked up the cord to an electrical outlet, turned

on the switch, and put the tube in my mouth. The swizzling sound

was startlingly loud as the gadget evacuated the overflowing

cavity. I smiled my gratitude. Then she, too, disappeared.

Finally, forever ended and Bill arrived. It was nearly seven-

thirty. "Oh, Bill." My tears choked off the weakened voice. His

face looked so sad. He was trying to smile, but tears were

glistening in his eyes. He kissed me and held me for a long

moment. Both of us struggled for control. He reached for a

handful of tissues and wiped the tears from my cheeks and the

residue of saliva from the sides of my mouth. I felt helpless, yet

grateful to have some of the mess cleaned up.

"I got my first set of chores done today." Now he could smile,

finally. Tasks can be diverting. "I just dropped off the letter, name

22 BED NUMBER TEN

tags, and gavel. Everything was just where you said it was."

"And the lunch date?" I, too, was distracted now.

"Yes, I canceled your luncheon. That's all I had time for, but

I'll get at the rest as I can at work today. Just don't worry about

one thing." He reached for a bag he had laid at the foot of my

bed. "I even remembered a radio for you. I was sure you'd want

it." Again I could feel the tears crowding my eyes. Dear Bill.

Always so thoughtful. I hadn't even asked for it.

Bill set up the radio and adjusted the volume as we discussed

which station I would enjoy most. At home I usually tuned the

radio to a talk station while I worked around the house. So that

was my choice now. We talked about Elizabeth, about his call to

Katherine in Nashville. He had assured her that everything was

under control. Neither of us wanted to worry her just a week

before final exams. I told him about my uneventful morning and

my long night. Bill laughed, saying his night had been very short.

I pretended to laugh, too, though I felt overwhelming sadness

over his having to go through all this.

The minutes passed so quickly, and too soon Bill was telling

me it was time to go. They had rules, he explained. Only three

visits a day—and only fifteen minutes at a time. As weak as I

was, I clung desperately to his hand and begged him not to leave.

"It's the rule, Sue. Besides, they say that any longer a visit would

only tire you." The rule, the ultimate answer. Always Bill played

by the rules. There was no use trying to fight "the rules." De-

jectedly, I let my hand drop. "I'll be back at eleven-thirty. I

promise." I heard the sadness in his voice and knew he didn't

want to leave any more than I wanted him to go. Bitterness

evaporated into a melancholy smile.

"I love you," he said as he kissed me.

"I love you, too." My tears washed away the image of him

leaving. When I blinked them away, he was gone. Only the clock

was still there. Seven forty-two. Three hours and forty-eight

minutes until Bill would return.

A flurry of activity accompanied the arrival of Dr. Muenkel.

The spinal tap. I looked at the clock, thankful they hadn't come

at seven-thirty.

BED NUMBER TEN 23

"Now just relax," Dr. Muenkel was saying after wiping my

back with alcohol and pressing his fingers along my spine in

search of the proper entry point. There was nothing I could do

but relax. I had no strength to resist, even if I wanted. The needle

slid in effortlessly. Not nearly what I expected. I wondered why

everyone said a spinal tap was so painful. I was ready to ask the

doctor about Guillain-Barre, but before I could, he patted my

hip and told me to rest, and he and the nurses disappeared.

Within minutes, another nurse came in and said, "All right,

Sue, now let's raise up."

I struggled to move, then I remembered. "I just had a spinal

tap. Don't you get headaches if you get up?"

"Oh, yes," she answered with alarm. "Get back down!" She's

supposed to know what's going on here, I thought. She should

have known.

Nurses moved toward and away from my bed. I was turned,

pillows were propped against my back to keep me from rolling

over. Harriet inserted a catheter. Did this mean I was losing

bladder control—or, more serious, kidney function? Apprehen-

sion mounted anew. Kidney problems were common in my

family. She assured me that I need not worry. Now I just

wouldn't have to be concerned about elimination. Not much to

be concerned about, I wanted to say; I've had nothing to eat or

drink for thirty-six hours. I felt all the more helpless. Each time I

was turned, I assured everyone that I was comfortable, even when

I wasn't. I didn't want to seem troublesome or hard to please.

I could feel myself drifting in and out throughout the morn-

ing. The radio droned on. Though I didn't follow the chatter, it

was constant and familiar. Dreams slithered into reality. I was in

a hospital and Bill was there beside me. "We have our baby girl,

Sue. We have our Katherine." We were laughing and crying all at

once. Neither of us had cared if we had a boy or a girl. While we

waited for our first child, several friends suffered miscarriages

and infant deaths. All we wanted was a healthy baby. Bill was

still laughing. "And she has exactly ten toes and ten fingers!"

The laughter swarmed around me hauntingly.

24 BED NUMBER TEN

"Sue ... Sue." A faceless white blur was shaking me. "Are you

awake, Sue?" Now I could see a nurse's uniform. "It's Harriet,

and this is Karen." I tried to focus on where I was. Were they

bringing Katherine to me? No, they didn't have my baby. Oh,

God, please help me. What am I doing here? This is all wrong.

"We need to hook you up with an IV," Karen was saying.

"You'll feel more comfortable when you get some fluids into

your body."

^And some breakfast," Harriet added. She was smiling

genially. "It's all in this little bag." I knew she was trying to add a

little humor. I tried to smile in response, but my lips felt as if

they'd been injected with Novocain. The nurses turned me to my

other side, and as Karen straightened the back pillows, Harriet

poked the needle into my arm. I could feel it. I was thankful, at

least, for that. I could still feel. I tried to remember all the

questions I wanted to ask, but before I could form the words,

Harriet and Karen were gone.

The wall clock stared at me, its hands plodding slowly on

their course. It was nine fifty-seven. One hour and thirty-three

minutes until Bill would come again. The radio droned on. I

tried to imagine that I was home, straightening up the family

room. The news was about to come on. I must concentrate.

Another murder, another fire, three people killed in an auto-

mobile accident. Another beautiful day for Houston. But not for

Sue Baier. I wanted the announcer to report that. Perhaps he did.

Bill arrived just as the clock's big hand marked eleven-thirty. I

tried to reach up to him, but I could not. I wanted to say, "I love

you" as he kissed me, but my lips did not want to move. Only

guttural sounds emerged from my throat. But he knew. "I love

you, too." Again he wiped my cheeks and the sides of my mouth

with tissues. The suction tube had fallen from my mouth while

I'd dozed and I was unable to replace it. Ever so gently, he

sopped up the accumulated pool inside my mouth. I fought

tears. He should not have to do this, but I was so thankful that

he did. Carefully he returned the suction tube to my mouth and

wrapped my fingers around it.

BED NUMBER TEN 25

My eyes never left his. There was something there—some-

thing dreaded. With the busywork finished, he could avoid it no

longer. He looked down and seemed to be studying his hands as

he prepared to speak.

"It's Guillain-Barre, Sue." His voice broke as he said my

name. Now he could look at me again, and read the anxiety—

the unspoken questions. "I don't know much about the disease,

Sue. I'm not sure anyone does. They say it's rare." He paused for

a deep sigh. "They say you will get well, but. . . but it may be a

while." Another painful pause. "You may be here for six weeks

... or more."

Six weeks—or more? The terrifying prediction of Bruce

flashed through my mind. ". . . you'll probably be with us for at

least three months." A long, low, horrified "No-o-o-o-o," es-

caped my worthless lips. And again, "No, no, no, no!"

Bill clasped my free hand so hard that it hurt. His head

lowered to rest on our joined hands, as if to emphasize the

bonding of our pain. He appeared to be praying. I tried to pray,

also, but just then I could only feel my own fear and see Bill's

terrible anguish. Finally he straightened up, pulled a hand-

kerchief from his pocket, and wiped his face, staring now at the

curtain at the other side of the bed.

He was still looking away. "Dr. Lohmann called me at the

office to tell me the diagnosis. He has only seen one other case of

Guillain-Barre. He said that one was quite mild. Dr. Muenkel

thinks yours may be a little more serious, but he is sure you will

be fine." He looked down to see if I was listening. I certainly was.

"Remember a few years ago when a lot of people got so sick

after taking the swine flu shots?" I nodded. I did remember.

"Well, this is what they had." My mind raced, trying to recall

what I had heard then. Nothing came back.

"I stopped in to see the company nurse after Dr. Lohmann

called. She pulled out a medical book that had a short paragraph

on Guillain-Barre." He paused and reached for his notepad.

"Let's see. It's an inflammation of the nerves, and it usually

follows some other infection, like your intestinal virus." So there

was a connection. Bill went on. "Starts in the legs and moves up

26 BED NUMBER TEN

rather quickly. Usually plateaus for a couple of weeks, and then

everything gradually returns to normal again."

He understood when I slurred the words, "Are you sure?"

"Yes, Sue, I am sure." His words were emphatic. "You are go-

ing to get well." I wanted to ask more, but I wasn't even sure what

the questions would be. "We just have to be patient now and let

this run its course." His affected acceptance was infuriating.

We have to be patient. I wanted to shout at him. WE! No, it's

Sue who has to be patient. I'm the one who is supposed to lie

here for six weeks. Six weeks! Or is it to be three months? Again

I tried to speak, managing just one heartbroken word: "Christ-

mas!" He understood the word, but ignored my meaning.

"You'll be much better by then, Sue. It will all work out fine."

Fear seemed to be drowning me as I tried to deal with this new

information. It was overwhelming. "I'm afraid I have stayed

longer than my fifteen minutes, Sue. I'd better leave before they

kick me out. They have said I can come in at five-thirty, instead

of the regular evening visiting time. That way, I can come by on

my way home from work." I nodded. "Your mother and Eliz-

abeth want to come in today at five-thirty with me. I think that's

good." I didn't want either one of them to see me like this, but

they needed to know I was being taken care of. Bill was right. It

was best if they came with him. Again I nodded. With a kiss and

a wave he was gone—to bury his fears and sorrow in his work.

For me there was the clock: eleven forty-eight. Another five

hours and forty-two minutes until he returned.

How would Elizabeth and Mother deal with all this? And

how would I ever get ready for Christmas now? I concentrated

on Christmas. Happy memories, that's what I needed to think

about. Perhaps the diagnosis was incorrect. It was probably just

a relapse of the flu. I should have taken more time to get over

that virus. But now I would get plenty of rest, and within a

couple of weeks, at most, I would be back home. Mother and

Bill could take care of some of my shopping, but I would be there

for the final preparations. This must be our best Christmas ever.

I dozed off, mentally hanging ornaments on the trees.

A constant stream of nurses interrupted my tree decorating. I

BED NUMBER TEN 27

began to receive shots of cortisone. Was this the miracle drug I

needed? I was turned from one side to the other. My mouth was

suctioned and my face wiped off. Blood pressure and pulse were

taken, IV bag was changed. I was thankful when the attending

nurse was Harriet. She always chatted so cheerfully. With her, I

felt human.

At two-thirty the new shift started wandering in. I could hear

them before they were visible. Their hellos announced each new

arrival. I didn't want Harriet to leave. Rounds again.

"Confirmed Guillain-Barre. Make sure she's turned every two

hours. Monitor respiratory function every hour." Respiratory

function? I was breathing fine. Perhaps I was getting a little

weaker—a great deal weaker. That's why everything was more

difficult, even breathing. But really I was just tired. I heard no

more of my report.

The tree trimming resumed. Elizabeth, Katherine, and I.

Laughter, home, the smell of fresh pine, Christmas music.

Strangers' voices tried to intrude on our special time together,

but I shut them out. When the tree was finished, resplendent

with its customary pink, white, and gold ribbons, birds, and

ornaments, we three turned to Bill for approval. His face was so

earnest. "Sue, Sue, I'm here. Elizabeth and Nana are out in the

hall waiting to see you." Where had all the pretty ribbons gone?

Why was I in this bed, with Bill leaning over me?

The Christmas tree was just a dream; the music vaporized with

a flick of a radio switch. I was still imprisoned in the ICU. The

immensity of my disappointment must have shown on my face.

"I love you, Sue," he whispered. Concern was vivid in his face.

I dared not blink and release the wellspring in my eyes. With

great effort I made myself repeat his words of love. He smiled,

obviously relieved that I was still conscious. "I'll get Elizabeth

and Nana. Try to be in good spirits for them, Sue." He was right.

I didn't want to alarm either of them. I would try to think

positively.

Elizabeth was a believer, in the fullest sense. It showed in her

serene appearance as she walked to my bedside. She assured me

that she knew with certainty I would get well, and that confi-

28 BED NUMBER TEN

dence radiated from her face. Her smile was warm and genuine.

But Mother's face held no secrets from me. Always a woman of

strong faith and courage, she was at this moment staggered with

shock and horror. As if someone were holding a mirror before

me, in her face I saw the full enormity of my illness. She tried to

speak through lips frozen by fear and anguish. Then she excused

herself on the pretext of wanting Bill to be able to return to my

bedside. I watched her shoulders heave with silent, desperate

cries of grief as she walked away.

Elizabeth asked the proper questions about how I felt. Was I

being cared for properly? Was I comfortable? I nodded affir-

mative answers. Then, as Bill returned, she asked about the

party, the holiday buffet we had planned—and mailed invita-

tions for. "Daddy says we have to cancel it. But I don't want to. I

want to have the party. I'll do all the work myself, I promise."

The words were pouring out, but Bill interrupted.

"Elizabeth, you know we can't go ahead with that party. It's

ridiculous. Your mother is here, very ill, in the hospital."

She continued looking at me. "Mother's going to be fine. We

know that. And I can do the party by myself. All the recipes are

already set out for the menu. I know I can do it. And Katherine

will help me. Please, let us go ahead with the party." Her gaze

never left my face.

I glanced away from her, saw Bill's obvious frustration, then

looked back to Elizabeth's intense expression of entreaty. I

knew how much this yearly event meant to the girls. They would

be going through enough with my illness. I couldn't bear the

thought of their hurt and disappointment at having to give up

their party on my account. Anything either of them had ever set

her mind to had been accomplished. Why should I now deny

Elizabeth my faith that she could do this on her own? Both of the

girls needed this, perhaps more this year than ever. Bill was

shaking his head slowly, but firmly, from behind her. Rarely did

I countermand Bill's wishes, but now I was sure I was right.

With the persistence of youth, Elizabeth asked again, "We can

go ahead with the party, can't we, Mother?" I looked at Bill as I

responded with a series of slow nods. I watched his jaw tighten,

but he said nothing.

BED NUMBER TEN 29

Elizabeth was ecstatic. She leaned over and hugged and kissed

me and hurried out to the hallway to tell her grandmother. Nana

will understand, I told myself. Bill took my hand. "This doesn't

make sense, Sue."

Again I forced my tongue and lips to work, however badly.

"Yes, it does. Life needs to go on normally, at least for her!" Bill

shook his head slowly, wearily. He wanted to protest, but he

would not.

At that moment I was startled to see Jo walking toward my

bed. She and her husband were good friends from church, yet I

knew Bill would not have called her. His surprise at her ap-

pearance told me I was correct. She must have heard through

church somehow, which meant my condition was considered

serious. But surely the message had been exaggerated.

It was wonderful to see her, but immediately I felt embar-

rassed about how bad I looked—the drooling, the mess on my

face and on the bed. My hair had not been combed all day. I

always tried to be fastidious about my grooming—not vain, just

meticulous. Jo had seen me only at church functions, where I

always was dressed most carefully. Now I was too weak even to

fluff up my hair.

Jo seemed not to notice. Her voice and her face showed only

concern and caring; her words were kind and gentle. She offered

encouragement, hope, and the promise of prayers. The suction

tube swizzled in my mouth. Her face indicated apprehension.

Again embarrassed, I willfully forced words, "Really not as bad

as it looks." She left as gently and graciously as she had entered.

Bill checked his watch. Even without looking up at the wall

clock, I knew it was time for him to leave. I was tired now, yet it

would be nearly fourteen hours until he returned. How could I

survive alone here for fourteen hours? Bill's face showed his

weariness and anguish, though he struggled to mask both. What

a burden I had become for him.

Soon after the family left, two nurses arrived, pulling a cart

loaded with equipment and drawing the curtain closed behind

them. As they opened packages and rearranged tubes and hoses,

they carried on a steady banter of easy chatter, along with asking

me Yes and No questions. Bill was such a fine man. My mother

30 BED NUMBER TEN

was so attractive. Wasn't Elizabeth a joy? Was I feeling any

general discomfort? Didn't I have another daughter? Away at

school?

I wondered why they were here. What was coming now? They

were so pleasant and courteous, and I was brought up to be

polite, so I responded to all their questions. Then came the news.

I was going to be hooked up to a respirator. They would place a

tube in my nose and down to my lungs to facilitate my

breathing. It had to come to this. I was too exhausted to care.

My eyes focused on the clock. Nine-fifteen. I must have slept.

What a blessed gift sleep was, but what a cruel disappointment

to wake up to all this. A new sound. Of course—the respirator.

Now I was just like the other pathetic creatures I'd seen lying in

all those other beds. My neck was limp and my head rolled to the

side. That slight, involuntary movement dumped an ocean of

saliva down my cheek. The thought of it made me cringe with

disgust. I tried my voice. No sound.

I was terrified. What was happening? At least I am not dying.

Bill had given his promise on that, and he would never lie to me.

But was this what living was going to be like now? Was this how

I was going to spend the long weeks—or months? Oh, God! All

alone? Just machines, tubes, and a fluorescent light glaring in my

face. And a clock that would mark the passage of my life silently

in this world of no communication. Panic intensified as I real-

ized that now I could not even call for help.

Suddenly Bill appeared at the foot of the bed. Was I dreaming?

No, there would never have been tears in Bill's eyes in my

dreams. But this was all so frightening that I could no longer

separate real from unreal. When he kissed me, I knew for sure;

Bill was real. Immediately he grabbed a handful of tissues,

wiped off my face, and cleaned out my mouth. His voice was

tender and gentle as he spoke of his decision to drop back in to

see me. A nurse had called to tell him I was on the respirator.

Was the tube terribly uncomfortable? I tried to respond. There

was no voice, and my mouth would not move, except for a small

BED NUMBER TEN 31

twitch to one side. No movement of my head, my hands, or any

other part of my body.

"Can you nod your answer, Sue? Is the tube uncomfortable

down your throat?"

I am trying, I am trying, I shrieked silently. My eyes widened

in terror and frustration. He read the look. "It's all right, Sue.

It's all right." He thought a moment. "You're blinking your eyes.

Can you blink just once if you're able to control the movement

of your eyelids?"

I forced myself to be calm. Then one slow, deliberate blink.

Bill smiled for the first time. "Good. Now, your mouth seems

to twitch to one side. Try to move it, and then blink once—yes—

if you can control that, too." With effort I moved the mouth, not

sure if it was even perceptible to Bill. Then I blinked. "Great!

The mouth can indicate no, and a blink for yes. Now ... is the

tube down your throat terribly uncomfortable?"

No, I signaled. Bill smiled, obviously pleased, and clasped my

hand. He followed this first success with a series of questions,

mostly insignificant—an effort, I was sure, to show me how

easily we could communicate. But I had questions, too, and I

could not ask them. What if I lost control of my mouth al-

together? And my eyelids? What else was going to stop work-

ing? Perhaps Bill could read those questions in my eyes, for he

sobered as he asked one more question. "Shall we pray together,

Sue?"

My response was one emphatic blink.

Cupping his strong, comforting hands around my limp fin-

gers, he bowed his head and prayed silently, pouring a soothing

balm over my worst fears. For this brief moment, at least, I felt at

peace. Our spirits spoke together, as one, to a Father we trusted

to bring us through whatever might lie ahead.

Though Bill could not see it, I smiled at him as he left, and I

blew a kiss with my motionless lips and useless hand. We would

make it!

Only when the new shift came on duty at eleven, and the

expressionless face of Craig stood beside my bed, changing my

IV, did the fear return: the terrifying reality that until seven-

32 BED NUMBER TEN

thirty tomorrow morning, when Bill would return, I was totally

at the mercy of people I did not know and with whom I could

not communicate. People who didn't even seem to care.

I willed not to think about them. The voices on the radio—

they will keep me going tonight. The intravenous bag released

its life-sustaining fluid. Drop, drop, drop. It was a rhythm that

was syncopated with the wheezing of the respirator. I will make

it. I will make it. I will make it.

HANGING

Loud male voices woke me with a jolt. It took an instant for me

to realize that the radio station had suddenly come back on the

air with the morning farm-and-garden report. The station had

signed off during the night, and no one had turned off the radio.

As the farm report droned on, I focused on where I was. The

reality was shattering.

Although I had been startled awake, nothing moved. In real

life, one jumps a little after such a start, but I was unable to

move. This could not be real. Yet it was not a dream, either.

Throughout the night I had been reminded forcefully that my

life was now some new, surreal horror of alternating sleep and

wakefulness.

I'd been dozing. I couldn't tell how long. Why hadn't I looked

at the clock when I was last awake so I would know how long I'd

slept! I was impatient with myself. That was the least I could

do—keep track of the time and know how much sleep I was

getting. Perhaps it didn't matter; the nights and days of the

universe would go on without my timing them.

But not my world. I must not allow myself to lose contact with

time. All I could be sure of now was the clock across from my

bed. It was four o'clock, and I knew it was morning. That was

important. I had to keep in touch with reality, to mark the

passage of days and nights.

Today is ... Wednesday—no, Thursday—December 4.

Bridge Club day. I want to go and play bridge today. What am I

doing here? Another day closer to Christmas and so much not

done. What am I to do about Christmas? Weeks, Bill had said. I

don't have weeks to lie here helpless. I have Christmas to

prepare for—and Bridge Club.

I felt the tube down my throat; harshly it reminded me of the

respirator at the left side of the bed. I was already so accustomed

36 BED NUMBER TEN

to the noise that for a moment I had not noticed it, but that

moment was short-lived. The respirator was there and would

not be ignored.

The light over my head went on abruptly. Though I hadn't

known a moment of darkness since leaving home, the added

brightness hurt my eyes. Craig was standing there, seemingly

oblivious of the radio—and of me. He was ready to turn me

again. Not a word, not even a glance at my face. Suddenly, I

recognized the voices on the radio, and they irritated me beyond

reason. This program had been on this station since I was in my

teens. In fact, one of the men had been an Extension agent in

Fort Bend County, where I grew up. They are a pair of Aggies

from Texas A&M and have been joking around for years with

typical Aggie stories. When we were first married, Bill and I set

our clock radio to wake up to them. But today their patter

disturbed me.

I tried to move my lips, just a little twitch of my mouth to

indicate no. Nothing moved. Crushing disappointment. But it

didn't matter to Craig. Methodically he checked my blood

pressure and pulse, my vital signs. Craig, I thought, you cer-

tainly should have failed your course on bedside manner. With-

out a word, he rolled me slowly, firmly, to my left side, again

propping pillows behind my back. He didn't notice the wetness

of my right cheek, or the pool that must have accumulated on

the bed, or the new gush that was now coursing down my left

cheek. Silently, he turned off my light and disappeared. I was left

with the radio and the farm reports.

Through tearful eyes I stared at the respirator. That mon-

strous machine to which I was wired just kept on pumping. I

could not breathe without it. Stifling fear was seizing me. Fran-

tically, yet methodically, I took inventory of every part of my

body. Toes: nothing. Legs: no movement, no muscle tensing.

My torso knew only the enforced breathing prompted by the

respirator. No movement of my body, my neck—nothing. Nor

my mouth. Only my eyelids still moved.

Only my eyelids! How would I communicate with Bill? He

would be here in three hours. Could it possibly have been seven

BED NUMBER TEN 37

hours since he left? What were we going to do now? I tried again

and again to move my mouth. Everything was gone. My heart

pounded with terror. At least it was still beating.

I told myself that this was the way it was going to be tem-

porarily. Remember that, Sue. This is just temporary. But the

real terror was surfacing. This disease is rare. Does the staff

know how to treat it? Do they know how this feels? I am

constantly alone. The nurses are close by in that nursing station,

but they are busy talking, laughing, doing other things. I know

they have monitors on me, but how can they be so indifferent

and cold?

The new shift came on rounds. Craig reported "no change" in

my condition. That's not true—my mouth won't move now. If

only he'd looked at me, he would have known to report that.

They went on to John's bed. A woman had come to his cubicle

during the night. Perhaps it was his wife. She walked away

crying, not knowing I was watching her. I wished I could say

something to comfort her, but she never even knew I was there.

Promptly at seven-thirty, Bill arrived. His touch was good and

familiar. How I wanted to return his sweet kiss. "It's a little cool

this morning. A blue-norther coming through." With wads of

tissue he cleaned out the mess in my mouth and then wiped off

both cheeks. Oh, thank you, Bill.

"Did you sleep well last night?" How do I answer him?

Frantically I fluttered my eyelids. "No, Sue, one blink for yes or

move your mouth for no." Oh, Bill, always by the rules. But the

rules have changed. Again I blinked repeatedly. He studied me

for a moment, and again I blinked my eyes several times. Then

he understood. "You can't move your mouth, can you? Is that

what you're trying to tell me?"

One firm, elaborate closing and opening of the lids. Yes.

"Well, then, how about one blink meaning yes and two for

MO?" I blinked once.

"Good. Now, did you sleep well last night?" I blinked once,

paused an instant and then blinked again twice. Bill looked

puzzled and then suddenly broke into a broad grin as he articu-

38 BED NUMBER TEN

lated my message. "Yes and no!" I responded with one blink.

Now Bill was smiling broadly. "It was the same for me. I was

so tired when I hit the pillow, but I kept waking up all night."

Oh, Bill. How upsetting all this must be for you. And how

exhausting, having to take care of everything at home as well as

to come here.

"I wish I didn't have to run so soon, Sue, but I have a

department meeting at eight. I'll be back at eleven-thirty,

though. I promise." He turned and looked at the wall clock.

"See, less than four hours." Again the kiss and wave, and he was

gone. But true to his promise, as Bill always was, he returned

exactly at eleven-thirty. Again the warm, tender moment for a

kiss, a wad of tissues wiping out my mouth, and another for my

face. Then he smiled and rubbed his hands together up and

down in a way that told me he had hit upon a splendid idea.

"Your yes and no answers aren't enough. You can't tell me

anything, just answer questions, right?" I wanted to blink a half-

dozen times to agree emphatically, but I did just one very

exaggerated blink. His smile indicated he understood my em-

phasis. "All right, let's try one word. Is there one word you can

think of that you'd like to tell me?"

Yes. I had no problem choosing the word.

"All right, let's go. The first letter—is it a consonant?" One

blink.

"Is it a B?" Two blinks.

"Is it the letter C?" Again two blinks.

On he went, listing consonants until he got to H, and I

responded with just one eye movement.

The second letter, I indicated, was not a consonant, so he

began with the vowels and proceeded until I responded affir-

matively to O. Next we were back to the consonants. Realizing

how long it had taken to reach the first letter, he asked, "Is it in

the first half of the alphabet?" No, I blinked. He began with N

and still had a long way to go before reaching T.

Bill was pleased. "Hot! That's it, isn't it, Sue? You're hot?"

Yes! Oh, how warm I was. The respirator spewed out a steady

blast of hot air. Even growing up in Texas in the days before air-

BED NUMBER TEN 39

conditioning, I never adjusted to the heat of summer. And that

was exactly what this hot exhaust felt like, just inches away

from my bed. Bill felt my forehead and then looked in surprise at

his hand. He had wiped off a handful of perspiration.

"Why, you are hot. You're covered with perspiration." With

another handful of tissues, he wiped my forehead, my face, and

then my neck. He finally noticed the covers pulled up under my

arm. "Would you like me to take this blanket off you?"

Oh, please, Bill! Yes. And the sheet.

Carefully, as if I were fragile and might break, Bill separated

the blanket from the sheet and pulled it back, folding it neatly at

the foot of the bed. Again he smiled. "There. That's better, isn't

it?"

No. It was better, but I wanted that sheet off, too.

"No?" He looked at the bed and at my face again. "But you do

want the sheet on, surely?"

Two deliberate blinks. No. No, please take it off.

He looked around. I could see his frustration. I kept my eyes

on him. I intended to hold my ground.

"You don't want the sheet?" There was a note of resignation

in his voice.

No.

Slowly he drew down the sheet, carefully lapping the hospital

gown and pulling it down to cover as much of me as possible.

His expression was definitely dubious as he turned to face me.

"Is that better?" He expected a no but got only one blink. Oh,

how I wished I could spell thank you to him. He could not know

how grateful I was.

"I have to get back." I looked at the clock. He'd been here for

nearly twenty minutes. A rule broken! "I'll be back at five-

thirty." His hand stroked my leg once, ever so gently. I knew

how much he hated to leave me "exposed" like this, how

reluctant he was to leave without covering me again. But he

kissed me, waved, and left.

Now I knew for sure I would make it. I could cope. I could

actually tell Bill what I needed. And he would make sure that the

staff heard me.

40 BED NUMBER TEN

I basked in that reality for only a few minutes before Roxann,

my shift nurse, came in to check my IV and turn me again. "Oh,

Sue," she said as she turned on the light. "You're all uncovered.

You must be chilled clear through." As soon as she had me

settled on my back, she covered me snugly with both the sheet

and the blanket.

Bill and Mother arrived together, exactly at five-thirty. I had

been watching the second hand sweep the face of the clock for

an hour before they arrived. A look of anguish tugged on the

features of Mother's face. While she stood at the foot of the bed

to compose herself, Bill came to me with his loving kiss. His

hand reached instinctively for tissues to wipe out my mouth.

"Sue, you're soaked with perspiration. And you're all

bundled up again with covers. What happened? Did you get a

chill?"

No. No chill—just these crazy nurses who insist on covering

me from head to toe!

Bill removed the blanket, then loosened the sheet, without

removing it. He noticed a washcloth on the nightstand,

moistened it in the corner sink, and washed off my face. Oh,

how glorious!

Mother stood by, watching quietly, patting my foot almost

constantly. Her face relaxed as she watched the activity. "Shall

we leave the sheet on for a while, until you dry off?"

No. I was never going to dry off until air could get at my body.

Once again, Bill shook his head reluctantly and pulled back the

sheet slowly, straightening my gown as he did so.

Mother was totally astonished. "Oh, you can't uncover her

like that. She'll catch cold."

Bill was very patient. "She wants the sheet off."

I closed my eyes to shut out the discussion. I knew Bill would

handle it.

"Are you awake, dear?" Mother was beside me now, softly

brushing the hair back from my forehead with her hand. How

often she had soothed me as a child with that hand to my

forehead. I blinked once as I looked into her sad eyes, wishing,

BED NUMBER TEN 41

as I was sure she did, that she could make all this go away with

that tender gesture.

"See, Ruth, she blinked yes" Bill said from the background.

"Oh. . . yes, she did, didn't she?"

There was an awkward pause as Mother braced herself to

speak again. "I had Bridge Club today, Sue." Yes, I'd remem-

bered this was our meeting day. "It just didn't seem right with-

out you. But it really would have been difficult to cancel on such

short notice. This way I just called Margie to fill in. Then I could

tell them all together that you were here." She was speaking

quickly now, obviously having mixed feelings about playing

bridge without me. But there was no reason for that. Just

because I was in the hospital that didn't mean everyone else's life

had to stop.

Mother had been a member of my bridge group for several

years. Bridge is something we enjoy together. When Mother had

a hip replacement and then eye surgery, she stayed with us to

recuperate. On both occasions, my turn came to entertain my

two-table club and someone couldn't come. So it was very

natural to ask Mother to substitute. It gave her a social outlet.

The next month, someone else asked her to fill in. It pleased me

that all my friends really liked Mother and enjoyed her com-

pany. By the end of the season, Mother was back in her apart-

ment, ready to entertain on her own. So she said, "You've all

been so nice to invite me. May I have you one time?" She fixed a

lovely lunch for us, and that day the group unanimously agreed

to make Mother a regular member of the club. Today had been

her turn, and I knew she'd been planning for the group all week.

"I hope you don't mind, dear, that we went on without you

today?"

No. Of course, I didn't mind.

"There, Ruth, she's saying no by blinking twice," Bill ex-

plained. For a moment, Mother seemed relieved and actually

forced a smile. But then she looked down at my long, bare legs

and the look of dismay returned. Slowly she turned and moved

toward the foot of the bed, again patting my feet. I blinked

rapidly at Bill. "You want to say something, Sue?"

42 BED NUMBER TEN

Yes. Mother looked back, curious. Bill began the laborious

process, struggling until he got the word, win.

"Win? Oh, the bridge game. Ruth, I think she wants to know

who won today. Right, Sue?"

Yes. For the first time, Mother smiled openly. I was greatly

relieved.

"Margie did. She made a small slam the last hand, complete

with 150 honors. No one else came near." This was more like

Mother. As she spoke, she moved back to my side. "Everyone

sends their love, Sue. You'll be hearing from all of them soon,

I'm sure." I blinked once, slowly. "Bill, did you see that? She

does understand." Bill smiled at Mother's delighted surprise.

But he was also looking at his watch. How quickly the fifteen-

minute visit passes. Mother knew, too, and stepped back to

allow Bill to return to my side.

"How are we going to get these nurses to leave the covers off

you, Sue?" Again we spelled.

Joan.

"Joan? Is that your nurse?" One blink. "You want me to tell

Joan to leave the covers off tonight. All right. That we can do."

While he stepped out toward the nurses' station in search of

Joan, Mother came back to say good night. As she leaned over to

kiss me, her hand never stopped patting me. She was fighting

back the tears. Poor Mother. She'd been through so much this

past year. Daddy had been in a nursing home for four years

before he died just last spring. She shouldn't have to be worrying

about me now.

Bill returned with the news: Joan would leave the covers off,

so I could relax now. As Bill leaned over to kiss me, I mentally

threw my arms around him for a good hug. How blessed I am to

have you, dear Bill. I love you. We spoke the words simul-

taneously. I wished he could have heard mine.

As soon as Bill and Mother left, Joan appeared. "What's this I

hear about your not wanting any covers?"

Yes, I blinked.

"Oh, yes. That nice husband of yours told me about the

blinking. That was one for yes, I believe." She smiled. "Does that

BED NUMBER TEN 43

mean, 'Yes, I want covers'?"

I shot back a firm no.

She was smiling broadly. "My, that was a strong response.

Those eyes were flashing. Don't worry, Sue. I won't cover you—

not until you want me to." She took my vitals silently. "Every-

thing looks good. Your husband . . . Bill, isn't it? . . ."

Yes.

"He's a fine man. You're very lucky to have him." She smiled

as I blinked agreement. "Ah, that's a very different look this

time." Gently, this petite brunette rolled me over to the other

side, walked around the bed, and tugged the undersheet smooth.

She removed a wrinkle that had plagued me all day. What a

relief! Carefully, she positioned my feet and legs, then my free

arm. "How's that? Are you comfortable?"

Yes. Thank you, Joan, thank you very much.

I fell into a deep, wonderful sleep. I was playing cards with my

group again. But the cards had no printing on them. I knew I had

one king and three queens, but there were no faces. My friends

were all at other tables; my partner and two opponents were

strangers. I bid a grand slam and I had no aces. I should have

played the hand, but instead, I was the dummy, so I didn't know

what cards my partner had. And I couldn't remember what was

trump. He was leading, and always our opponents' cards were

higher, but we were taking trick after trick. That was changing

the rules! "How lucky you are," Mother kept saying from

another table. "How lucky you are."

During the hours that followed, I partially awoke every time

Joan came to check me. She always asked me some question.

Was I comfortable? Was I warm enough? Each time I answered,

she was pleased. So was I.

Finally, the new shift was making rounds. Already I knew the

procedure. The party was led by whichever nurse was in charge

of the outgoing shift. Joan made her report on me, and though

her voice was so soft I couldn't hear what she said, I was sure she

told them to leave the covers off.

1 was concerned about who would be my nurse for the next

shift. 1 saw Craig and Bruce and prayed it would not be either of

44 BED NUMBER TEN

them. It was such a relief when a new person announced she

would be my nurse. She was an attractive brunette and seemed

friendly.

Linda was pleasant and thoughtful as she took my vitals and

turned and positioned me. "Joan said you didn't want to be

covered, but your feet are cold. I'm sure you'll want covers

tonight. It will be getting cooler in here." Slowly, without even

looking at my face, she drew up first the sheet and then the

blanket, tucking in everything securely on each side.

She turned off the light, saying, "See you later, Sue. Good

night." I silently shouted my protest. But she neither heard nor

saw.

"December 7: Lohmann says fever to be expected. Shell party."

—from Bill's diary

The days and nights dragged on. I made my mind focus on the

clock, on the shifts. Staff kept changing. Doctors, nurses, and

respiratory therapists came and went with each shift. I alone

was trapped here. Except for my eyelids, every part of me had

shut down. Entombed in my immobile body, I could see the tiny

universe of intensive care. I was a spectator, watching a world

that never stopped moving. Through it all, Bill arrived un-

failingly.

"Do you want me to uncover you, Sue?" Bill asked when he

and Elizabeth arrived in late morning.

No. I couldn't understand why, but the cover felt good. Quite

a change, I thought.

"I figured that. You're not perspiring today." Like a solicitous

parent, he felt my forehead. "You're running a little fever. That's

why you may feel chilled at times."

How was I to spell how high, when it was such an effort?

"You're getting antibiotics, shots, and it should be down by

tomorrow, so don't worry." That explained the shots I was

getting in my hip every four hours. Why didn't the staff tell me

why I needed them?

This was Sunday. Bill had not come in early because of

church, and now he was telling me about the services. It didn't

seem right, my not being able to go to church with Elizabeth and

him. We had been members at St. Philip Presbyterian since the

girls were in elementary school. Bill was an elder, and very

involved in church activities.

"Everyone's praying for you, Sue. The whole congregation."

His sentences seemed slow and sad. Elizabeth nodded her agree-

46 BED NUMBER TEN

ment. "It was hard walking into church without you this morn-

ing. It just didn't seem right. But Sam announced your illness

from the pulpit, and everyone prayed for you." Sam Lanham

was our pastor, and Bill, as elder, worked closely with him. I was

thankful, both for the prayers and for the comfort they gave Bill

and Elizabeth. "After services, everyone stopped us and sent

their love and best wishes." Bill drew a handkerchief from his

pocket and wiped his eyes. "They're all pulling for you, Sue."

I felt their love—its gentle, healing warmth. I was so grateful

for what their support meant to Bill right now.

Elizabeth talked of school and clubs. She was involved in so

many activities. I'd always known what she was doing, and now

I missed the after-school reports on her activities. But we agreed

she would come mostly on weekends. I didn't want her missing

out on important things in school. Now I listened eagerly, and

she seemed as anxious to tell me as I was to hear. Listening to

her, I almost imagined I was home again, getting her news.

Suddenly I realized that this was the day of the company

party. I had so looked forward to it. This was the first year we

had been invited, and I'd been in the midst of making a dress for

it when I fell ill. In fact, just before I got sick, I had been feeling

very industrious and cut out a wool suit, two blouses, a wool

dress, and, especially for this party, a green silk crepe dress.

Now all that fabric lay in a pile near the sewing machine at

home. The party would have to go on without me tonight, and

without my green silk dress.

But not without Bill. I insisted he go. I felt he needed to do

something that was not related to the hospital. And I wanted

him to tell me about the party.

"No way," Bill said. "This is no time for a party." I under-

stood his not wanting to go alone, especially under the circum-

stances. But these were people he knew and felt comfortable

with at work. And I wanted some contact with what I was

missing. Elizabeth understood, and, lending her voice to my

spirit, she insisted he go.

He was still muttering his objections when they left at the end

of the visiting period, but he had agreed. I knew he'd go, if only

for me.

BED NUMBER TEN 47

I watched the clock all afternoon, though I tried to concen-

trate on the Houston Oilers football game on my radio. When

six o'clock came, I knew Bill was at the party—for both of us. In

my imagination, I pictured us driving up to the Houston Coun-

try Club. I saw Bill in his dark blue suit and me in my green silk

dress. We would know all the people there, though there were

some I hadn't seen in ages. I tried to picture each of the women

and what she would be wearing.

I made myself concentrate on them, blotting out the doctor,

nurses, and respiratory therapist who were congregated at my

bedside. "Tracheotomy," they were saying to me, but I refused

to listen. I felt a needle pierce my throat. Pain! Then numbness.

Rough hands. I must escape. I shut them out with closed eyelids

and my fantasy. I was at the party with Bill. We always enjoyed

company functions. After all, Shell Oil Company had been so

much a part of our finding one another.

When I graduated from SMU, I went to work in the account-

ing department at Shell. It was during the recession of 1958, but

fortunately they were interested in the business half of my

business/home economics degree. I'd taken that double major

because I hadn't known what I wanted to do, and it seemed

practical. At Shell, I was trained in all areas of the accounting

department, and I found my niche in personnel and payroll. I

was soon aware that the married people in accounting were

trying to push the young singles together. And I was one of their

targets.

The company was recruiting for the bowling leagues, and the

people in my office encouraged me to get involved. Though I had

taken bowling as a physical education course in college, I grew

up in an era and in a community where a bowling alley was not

considered the nicest place for a young lady to be seen. Now,

however, in Houston, women's and mixed leagues were in full

swing. Still, I was reluctant.

Finally, I signed up for the Friday night mixed league. I was

uncomfortable at first, but the team members were very nice to

me.

One Friday night we bowled a team that had this Bill Baier on

it. He was a terrific bowler, rolling one strike after another. You

48 BED NUMBER TEN

could tell he was pretty proud of how he was doing. I was

keeping score, and each time he bowled, he came to check

whether I scored all his strikes properly. It perturbed me that he

thought I didn't know how to add. After all, I was an accoun-

tant! It was obvious he was showing off, but he was nice

looking, and I couldn't help noticing him.

The following day, I quietly looked in the company records to

find out more about this great bowler.

Alarm! Whose? Voices.

"Turn that thing off! Get some suction here." The doctor's

voice was demanding. Urgency surrounded me.

Please help, Bill. Bill!

I forced concentration on Bill Baier. I must get free of this

madness, of all these people. They cannot harm me if I am not

here. Bill and I ... at Shell Oil Company. . . .

I commuted to work every day from Richmond, Texas, a small

community some twenty-five miles southwest of Houston. One

day as I drove to work, a car pulled out in front of me. I

recognized him. That's how I discovered where he lived and the

fact that he was in a car pool. Strangely, it happened again every

morning thereafter. Just as I hit this one intersection, there came

that little gray-and-white Ford carrying Bill Baier to work. The

timing was uncanny. I could not help but become more aware of

Bill Baier.

Eventually Bill got around to asking me out for lunch—to see

if I was "worth" taking out to dinner, he later explained. That's

when I learned for the first time what a practical man this was.

He was twenty-eight years old and was no longer interested in

dating just to go out and have a good time. He'd decided he was

beyond all that foolishness.

One day, shortly after the lunch, Bill walked up to me at work

and asked, "What would this one do if he would like to have a

date with someone who lived way down in Richmond?"

And I answered, "One drives to Richmond and picks one up is

BED NUMBER TEN 49

what one does." He smiled and nodded. I felt it wouldn't be too

much longer before he called.

It was quiet now. They were all gone. Whatever they had had to

do was finished. I wanted to stay awake and wait for Bill to come

back from the party, but I could feel myself slipping away. The

respirator hissed its pattern—zummm, tch . . . zumm, tch.... I

tried to see what time it was, but the clock drifted off. And

so did I.

When I woke up, Bill was standing beside my bed. How long

had he been there? Our time together was too limited to waste

any of it sleeping. As soon as I opened my eyes, he leaned over

and kissed me tenderly. He was wearing his blue suit, just as I

had imagined. Immediately he was swabbing out my mouth.

"They called me at the party and told me they were doing the

trach. I'm sorry I wasn't here with you." Oh, Bill. I didn't want

you here for that. You had to be at the party for both of us. "Was

it painful?" he asked.

No. There was no way to tell him that only my thoughts of

him, of us, fought off the fear and the pain.

"Everyone asked about you, wanted to know where you

were. When I told them, they all sent their best wishes." Every-

one. That's not good enough. I made him spell with me.

Who?

He began with the names. That was better. Familiar names. I

had wondered who would be on the guest list.

"Oh, yes. Ann and Howard were there, and they were very

upset to hear. . . ."

Ann and Howard. I felt an inner smile just thinking of them.

We had such good times with them during our year in Holland,

when we were all assigned to The Hague on the company

exchange program. It's been so long since we've seen them. I

must call Ann when 1 get out of the hospital.

". . . and Ann sent her love."

I was feeling tired now, very tired. And disappointed. I had

really looked forward to this party; now it was over. Bill hadn't

wanted to go alone, but he went for me, knowing I wanted to

50 BED NUMBER TEN

hear about it. And I did. But now I was too tired to listen any

more. I love you, Bill, I whispered wordlessly as he kissed me

good night and left.

Monday morning started off badly: I was assigned to Sandra.

She seemed to mean well, but when something or someone

distracted her, she'd scoot off, saying, "I'll be back in a few

minutes, Sue."

On Sunday, Vickie, the best nurse I'd had since coming into

intensive care, noticed on my chart that my bowels hadn't

moved. "I'd better give you an enema," she said. "I hate to do it

to you, but it's in your best interest." She was sincere, and I knew

she was right. Later in the afternoon, the enema caused some

minor happenings, but it never really took hold.

When Sandra came in on Monday morning, I tried to tell her

what I needed. She just laughed. "Sue, you couldn't need a

bedpan." Then something at the nurses' station caught her

attention. "I'll be back in just a minute, Sue." And off she went.

Come back, come back! I could feel the impending rush, but I

had no control. All of a sudden it was there. Terrible. All over

the bed. I was horrified, humiliated. And angered because

Sandra had betrayed me.

When she returned, her expression was one of amazement.

"Oh, that was what you were trying to tell me."

Maybe now you will pay attention to me, I scolded her

mentally. But that was no consolation. Through the cleanup she

remained very kind and gentle, but I knew that she was per-

turbed. However, my thoughts of Sandra were short-lived, for

now I realized I had lost control over all body functions. How

could I possibly deal with this new humiliation? What more is

there to lose? How far will this go? I fought for courage.

Bill had been so reassuring. He had tried to explain what he

heard from the neurologist—that everything might go, but then

it would return. I believed Bill. He was never one to say some-

thing unless it was so. I must believe. I didn't know what it

would be like when everything shut down, but I did believe it

would all come back. And the staff had told me about another

BED NUMBER TEN 51

patient with Guillain-Barre who had returned to a normal exis-

tence in three months. That was such a long time, but I could

make three months. I believed and trusted. 1 was terrified, but I

knew for certain that everything was going to come back again,

even this control. I prayed it would come soon. I could endure

just about anything, but not this. Please, not this.

Bill was waiting for Sandra to finish changing me. At least he

hadn't seen what happened. He couldn't stay long. He had

another meeting, so he had to leave in a few minutes. That was

all right. I needed time to deal with this new degradation.

Thoughts of my father haunted me throughout this morning.

What had gone through his mind during his lucid moments at

the nursing home? Toward the end, he was bedridden, unable to

move except to eat. I could see him lying there, and now it made

me wonder. ... I'd been so sure he was getting wonderful care.

Still, I wondered whether some of these things happened to him,

with Mother and me unaware and never able to help him.

Daddy had never lost his propriety, even as his senility wors-

ened. The staff at the home said that most people who reach that

point lose control over their thoughts. Though they may have

been very nice people, they might give vent to some very unex-

pected words or gestures. The nurses said they had never seen

such a gentleman in that state as my father. To the end, he was

apologizing if he burped.

What had poor Daddy been through as he lost his bodily

functions? I felt a new anguish for him—even as I felt it for

myself.

Promptly at eleven-thirty, Bill returned. He looked so tired.

How could he not be tired? So much to do. Each day he added

new notations to his pocket journal.

He'd just been handed my first week's hospital bill and was

studying it item by item. We were stunned by what this illness

was costing. Every little thing was listed on the statement. We

were both astounded by the charges for facial tissues, so Bill

made a note to start bringing my brand from home. I liked them

better than the hospital tissues, anyway. We would try to econo-

mize however we could.

Another note for Bill's book: batteries for the radio. Thev

52 BED NUMBER TEN

lasted only two days, so Bill always had to remember to buy new

ones. Soon, however, he bought a battery charger. Then he'd

come in each day with fresh batteries in his pocket and take the

used ones home to be recharged. I urgently needed the reality of

that radio between his visits.

Each time we began to spell, the little diary came out, and Bill

recorded my needs and my concerns. If those concerns required

him to talk to a nurse or doctor, he did that, too.

And always I wanted to know about the girls. Had he talked

to Katherine? Was Elizabeth going somewhere this evening? I'd

known those things before and I still needed to know. I felt I had

to remain involved with my family.

Never was there time enough to spell all the things I needed to

say, to ask all the questions. But we had found a way to speed up

the process. Now, before starting each word, I told him how

many letters it had. When I indicated more than six or seven, he

sputtered, "Can't you think of a shorter word?"

No! If I could, I would. The pressure of the fifteen-minute

time limit created tension for both of us. There was so little time;

none for me to say or ask anything beyond the barest essentials.

Each time he came, I wanted to ask, "How are you, Bill ? Are you

getting enough rest? How are things at work?" But there was

never enough time. And how I wanted to say, "I love you."

"December 9: Why Sue?"

—from Bill's diary

Bill was gone, and I wanted to rest, but I discovered that there

was little of that to be found in a hospital.

In the early afternoon, a new person came to look at the dials

on my respirator. A few seconds later, my very good friend Bess

came in. I was so happy to see her that it never even occurred to

me to worry about my appearance. After all, this was Bess. After

a warm greeting, she pointed in the direction of the man at the

dials. "Sue, I want you to meet someone. This is my friend Gary

Stiller. We used to be neighbors." I was puzzled.

BED NUMBER TEN 53

"Hello, Sue." After glancing at me briefly, he was again

looking at Bess.

"Gary is in charge of the physical therapy department here,

Sue," Bess explained. She was talking so fast that I could tell she

was uncomfortable. "At one time he was also the head of

respiratory therapy, so he knows about everything that's being

done for you now. He'll be keeping an eye on you now, I'm

sure."

Gary said he would be overseeing all of my physical therapy

and also be very much involved in my case. He seemed inter-

ested and considerate. "Are you comfortable?"

I blinked once, but he didn't notice. But as with so many of the

others here, he seemed uncomfortable addressing me, so he

directed his questions to Bess. I was just an inanimate object

lying between them. I stared steadily at him and fiercely blinked

my answers. He did not notice. Each question was addressed to

Bess. But she didn't know how to spell with me yet, so she could

answer only with bits of information that Bill had given her.

Finally he gave up. "Well, I'd best be going."

To Bess he said, "Thanks for coming. I'll leave you two alone

to visit. Just a few minutes, though."

And to me: "I'll be seeing you, Sue. If ever you need anything

special, just ask for me."

It was so good to be alone with Bess, who was holding my

hand and talking to me. I had the first news of her and our

friends in a week. It seemed more like months. But a one-way

conversation was awkward for her, and the few minutes were

gone quickly.

Tears of frustration poured from my eyes when she left. How

lucky I was to have a friend like Bess. Yet, now she could leave

and her life went on as usual. But I was still imprisoned here in

Bed Number Ten.

I closed my eyes, wanting to shut out the chaotic world sur-

rounding me. Then I became aware of someone standing beside

me. Another nurse? Another repositioning? More anxiety.

Finally, I opened my eyes, and there he stood—a man in a blue

lab coat who had perhaps the broadest, warmest smile I'd ever

seen. Even his large, dark-framed glasses could not dim the

radiance beaming from his eyes.

"Hello, Sue. My name is Charles. I'm a physical therapist."

He had taken my hand, as if to shake it, but instead held it gently

in his large, comfortable hands. "I'm going to be working with

you, starting tomorrow." He spoke directly to me, never looking

away even for an instant. "We're just going to do a little range of

motion with you. It's nothing to worry about."

Yes. I felt certain there was nothing to worry about. I knew

instinctively that Charles would never deceive me.

"I'll be coming in twice a day, just working on your circula-

tion. I am sure it will make you feel more comfortable."

Yes. I knew improving my circulation would definitely make

me more comfortable.

"After you're a little better, we'll be taking you to the physical

therapy department for regular work to rebuild your strength."

Yes. Yes! Charles was the first person here who spoke con-

cretely of my getting better. And he was saying it directly to me,

not talking to Bill or some other person on the other side of my

bed!

Gently, he laid my hand back on the bed. "I'll see you tomor-

row, Sue." The smile was still there, warm and sincere, as he

waved good-bye. At least now there would be something dif-

ferent, something pleasant to anticipate.

As usual, I was watching the clock, waiting for Bill. My shoulder

was sore. Why? I couldn't see my upper torso to look at what

BED NUMBER TEN 55

was hurting. It was five-forty. Please come, Bill. And then he was

there.

He'd been talking to a Dr. Langos, who told him they put in a

"subclavian," a new term for both of us. Bill explained that it

was an intravenous feeding tube that was inserted in my shoul-

der area.

Bill was studying my right shoulder. "It will be used instead of

the IV that was in your arm." A couple of stitches held the

subclavian in place, he told me. Sadly, I realized that meant it

was intended to stay there for some time.

I couldn't remember anything about the procedure, except

people hovering over me. I'd fought them out of my con-

sciousness. The doctor told Bill they used a local anesthetic and

did it right there in my bed. It only took a few minutes, he said.

I'd also been given a nasogastric tube, an NG tube for short. I

remembered that procedure. A nurse, Phil, had been instructed

to insert the tube, which had to go up my nose, down my throat,

and straight into my stomach. He'd tried and tried, but appar-

ently he couldn't get it past a small growth in my nostril. I felt as

if I were a rag doll, being put into a horrible angle to try to make

it work. He was a tall, slender man who was rough when he tried

to do anything. He'd been that way when he'd put the IV in my

arm several days earlier. But now he seemed to be thinking, "I'm

going to get this down you or else." An absolute nightmare.

Phil never spoke to me, even to tell me what he was trying to

do or that he was sorry it was so difficult for me. I don't think he

realized I was conscious. Finally he gave up and a doctor came

back to do it. In spite of the agony and fear, I'd felt surges of

anger as they worked on me. And I kept thinking of Bruce's

warning that first night: "Get used to that. You're going to have

a lot of that while you're here."

"The doctors are concerned because you're losing weight so

drastically," Bill said. "They have to provide you with more

food." From now on, I would be fed supplements through the

NG tube, plus regular IVs through the subclavian. They were

forcing nourishment down me as fast as possible.

How nice! A tube for everything. I counted them: these two,

the respirator, the Foley catheter, and four sensors that

56 BED NUMBER TEN

"plugged" me into the nursing station monitors. Those had been

hooked up as a routine procedure when I first came into inten-

sive care, to check my heart and respiration. What else was I to

be wired to before this was over?

Bill reported that he'd had a long phone conversation with

Dr. Lohmann, who told him I was doing very well. What on

earth could he have meant by "doing very well"?

"He assured me that you're being stabilized and your condi-

tion is not critical. He said you're in good hands here." All these

tubes and cords to keep me alive, and I'm not critical. And "in

good hands," indeed. Whose? When my bed was tilted, with the

head elevated, I could see the staff go from one patient to the

next—often without ever washing those "good hands."

Dr. Lohmann also told Bill they were taking me off cortisone.

In some cases it lightens the symptoms of Guillain-Barre some-

what, he had said, but there was no indication it was helping me.

However, my infection was responding to the antibiotics. At

least there was one reason to be thankful.

Poor Bill had been through another hectic day, but now he

relaxed for a few minutes and reported on his accomplishments.

He never mentioned work, just what he'd managed to do for me.

Last night after leaving the hospital, he finished addressing the

Christmas cards to our friends in Holland. These were people

we knew so well, and I always enjoyed writing letters to go with

the cards. Writing those letters seemed to mark the beginning of

the holiday season for me. But this year I could only lie here and

think about those friends. Another sadness.

Just before I got sick, we had purchased a new washing

machine. Now Bill told me it was being delivered tomorrow.

Mother would go to our house and wait for the truck. He had

also talked to my friend Liz about taking a few house plants,

especially the orchids. They had belonged to Liz's mother, a

special friend. She and I had shared an interest in them, and after

her death, Liz gave me her orchids. Keeping them alive was

important to me. Now Liz would keep them at her house while I

was in the hospital. Bill also asked Liz's advice about the rest of

our plants. She had cared for them the year we were in Holland

and knew our jungle nearly as well as I did.

BED NUMBER TEN 57

My bromeliads, he informed me, were also being well cared

for. My collection, made up of seven lovely varieties, had been

started by a friend. B.G., as everyone knew her, had hundreds of

plants, two greenhouses full of them. She knew all of her

bromeliads by their botanical names. First she had given me one

of them. Then, after I sent her a picture of the foot-and-a-half-

long flower spike—to prove I'd been successful—she gave me

another, and then another, until I had seven. She'd heard I was in

the hospital for a long stay, so yesterday she stopped by to pick

them up. What a relief for Bill! Seven fewer plants to care for.

Tonight, however, we had another, more serious concern to

deal with, and Bill finally got to it. He and Mother had talked

about the girls' party, and she was very much against their

having it. She did not think the party was appropriate when I

was in the hospital. So Bill would have to tell Elizabeth that

Nana would not come to the party, or have anything to do with

the preparations. This was incomprehensible to me! Life did

have to go on, just as I had expected things to go on with my

Bridge Club. If only I could talk with her myself. Mother has

always been so good with party planning and table decorations.

I was sure she'd help Elizabeth—and Katherine after she got

home from school. It would give them something to share now,

when they all needed one another. I was so disappointed—and

bewildered. But there was nothing to be done about that now.

Bill would not intrude on her decision, and I could not. He'd just

have to tell Elizabeth she was on her own.

For a change, 1 had some good news tonight—my starting

physical therapy. But how could I tell Bill in the little time we

had? I began spelling. Charles.

He was puzzled. A nurse walked past my cubicle, and Bill

stopped her to ask, "Who is Charles?"

She smiled at me and told Bill, "That's one of our physical

therapists. I think he's going to start Sue on range of motion

tomorrow. He's excellent."

"Is that what you were trying to tell me, Sue? Was he here to

see you?"

Yes.

"Are you concerned about what he'll be doing?"

58 BED NUMBER TEN

No.

"Well, you must have liked him."

Yes.

"Hmmm." Bill pulled out his diary and slowly, with exagger-

ated syllables, articulated the words he was writing. "En-ter

Char-les." This was the first time I'd been aware of any humor

since I arrived in ICU. It felt good.

Our pastor from St. Philip, Sam Lanham, stopped by—a

pleasant surprise. He did not always make such calls because

our congregation had a special minister assigned to hospital

visitation. I was concerned; my condition must really be serious

for Sam to come. Perhaps he was here because he and Bill were

associates through their church activities. Yes, that must be the

reason. After all, Bill said I was not critical.

Sam had a special way with words, and his thoughts and

prayers were just what we both needed.

Finally, Bill had to leave. Friends from church were meeting

him here at the hospital to give him a casserole for dinner. I was

so pleased, and Bill was relishing a meal he and Elizabeth didn't

have to cook. Neither of us could have guessed that this was

only the start of a great outpouring of such kindness. In the

months ahead, our friends and neighbors and the wonderful

people of St. Philip would see to that.

The evening looked long and bleak, as it always did after Bill

left. So many hours of emptiness. So many hours of terror at

being all alone. Whenever a nurse or respiratory therapist left

me, I was seized with horrible fear, knowing that I could not

move or call for help, no matter what was happening to me. I

watched the staff congregate in the nursing station—just a few

feet away, yet so removed. They all seemed to be socializing. I

wondered if anyone realized that I was frightened, lonely, and

bored. Every now and then, when they remembered or it was

convenient, they came out and did what had to be done—turned

me, or checked an IV or the respirator, or forced a packet of

feeding solution down my NG tube. There was not necessarily

any schedule, and most of them were so impersonal.

BED NUMBER TEN 59

That's not fair, Sue, I scolded myself. They can't be in here all

the time with me. They'd go crazy spending all their hours with

someone who can't even talk. And they have other patients to

look after. They are watching the monitors. They know I'm all

right. And I will be all right. I will. Dr. Lohmann says I am not

critical. I'm stabilized. But I can't help it. I am so afraid to be

alone.

Bill had turned on the radio as he left. At least there were

voices to keep me company for the night. I concentrated on the

six o'clock news. Traffic was snarled from a cloudburst on the

west side of town. I hope Bill and Elizabeth made it home safely.

Let me think. What meeting did she have today after school... ?

What a wonderful surprise when Jo came into view. I was so

glad to see her again that I no longer felt embarrassed about how

I looked. I hadn't frightened her away the first time she came!

"How good to see you," she said. She couldn't imagine how

good it was for me to see her tonight! Her voice was music. She

said that she had talked to Bill at church Sunday and asked if I

knew the whole congregation was praying for me. I blinked

once, and she seemed to understand instinctively that I was

saying yes. "You signaled me with your eyes, didn't you?"

Yes.

"Wonderful. And what is your no response?" I blinked twice.

"Well, then," she went on, "we can talk now. Are you in pain?"

No. That wasn't exactly true, but I couldn't possibly explain

to her that a wrinkle in the sheet was causing my hip much

discomfort. She talked of her children and mine, her husband's

business travel, friends from church—just everyday things.

How wonderful to share just a few simple details of a friend's

life.

"December 10: Hospital switchboard says Sue 'still critical'! "

—from Bill's diary

I watched the morning shift making rounds. Nothing of signifi-

cance was reported on Sue Baier. "Sue's stable." It was as if they

60 BED NUMBER TEN

were saying, "You don't really need to worry about Sue any

more. She's stable." Here I was, unable to move, unable to

breathe, and the message seemed to be, don't worry about Sue.

After all, we've got a heart attack over here, and so-and-so had

an operation, but Sue's fine. I wanted to shout: Hey, wait a

minute. You're not in intensive care if you're OK.

They said I had a restful night. In frustration I thought about

the previous night. I'd been force-fed a dietary supplement at

two o'clock. After feeding me, my night nurse—she was new to

me—rolled me over, and the metal clamp from my NG tube was

caught under my shoulder. It was two hours before she came

back to reposition me and ended the agony. I'm not sure she

noticed it even then. She just accidentally rolled me off of it. And

now she was reporting that I had slept well!

I studied the faces of the morning group and wondered if there

was someone who would try to communicate with me. That

was always my first waking, anxious thought.

Now they were gone, and I was left to stare at the clock,

ticking off the hour until Bill's arrival. In minutes, however, a

friendly face appeared at the foot of the bed. Charles. He was

carrying a steaming cup of coffee as he stood there smiling at

me.

"I just stopped by to see how you are doing and to check

whether you are going to be ready for me today." He nodded his

head in the direction of the nurses' station. "They say you're

doing fine. Are they right?"

Two blinks. But he didn't need the sign; he could read the

expression in my eyes.

"That's what I thought. They always say everyone is fine."

Once again I felt like smiling—if only I could. He read my

bemusement, and his smile acknowledged it, before becoming a

little more serious.

"Are you going to be ready for some range of motion this

morning?"

Yes. Yes, yes, yes.

Again the smile. "Well, that was emphatic. I'll see you after

your bath." I could hardly wait.

BED NUMBER TEN 61

Bill came in, reporting that the casserole had been delicious.

I'd known it would be a great treat. As he started to tell me

about Elizabeth's plans for the day, the man Bess had brought in

yesterday walked up to the foot of my bed and introduced

himself to Bill. Gary Stiller. Yes, that was his name. He imme-

diately began talking about tennis shoes. Tennis shoes! Bill's

expression displayed the surprise I felt.

"What she needs are some high-topped tennis shoes, some-

thing stiff and heavy to keep her feet firm and upright." He was

actually serious about this. And high-topped tennis shoes at

that. "Without them, she'll get foot-drop."

Bill was giving him full attention while I lay there thinking

that they were out of their minds. Here I was, burning up with

heat, and even though my feet often felt cool to the touch, they

had been sweating terribly. I cringed at the thought. Most of the

time my hospital baths were no more than a wipe with a wet

washcloth. They never think to wash my feet! People were

already being a little careless about handling me. Those tennis

shoes would be heavy and clumsy every time they turned me.

But worst of all, I could just picture myself lying in that bed,

tubes coming from everywhere—six feet tall, covered only with

a skimpy little hospital gown, and wearing high-topped tennis

shoes\

"When all the muscular control is gone, the foot falls for-

ward," Gary was explaining. "If we don't brace it, her foot will

get to the point that we can't get it back at an angle again." I

didn't want foot-drop, but there had to be something other than

those ridiculous tennis shoes. Surely there was another way.

Gary was gone, and Bill still stood there very seriously consid-

ering his newest challenge. I wanted him to laugh and tell me

how silly this was. But he took out his pocket diary and made a

note—to look for the tennis shoes, of course.

I signaled. No, no, no. But Bill was too preoccupied to notice.

He kissed me and took off for his office—and his quest for high-

topped tennis shoes!

After Bill left, I tried to forget such nonsense. I was ready to

get on with my bath before Charles came to begin my therapy.

62 BED NUMBER TEN

But bath was hardly the word for what I would get today.

Immediately I sensed friction between the nursing staff and the

physical therapy department.

"We'll have to make this short today, Sue," Linda said.

"We're a little behind, and Charles will be here soon to work

with you. You know how that goes." I didn't know—not yet.

But I would learn that, too. The barely damp washcloth

skimmed over my exposed skin. "There, that should hold you

for now." Couldn't she see the perspiration that poured off me

or the oil that must have made my skin shine? Imagine tennis

shoesl What I wouldn't give for a long, warm shower, with soap

and shampoo.

Linda neatly pulled the sheet and blanket up over my shoul-

ders and gave me a professional pat. "There."

No. Please, not the covers. Desperately I tried to signal her,

but she disappeared with the towel and one barely damp wash-

cloth.

Within minutes, Charles came. Already my face was covered

with moisture. "You look terribly warm, Sue. Why don't I just

take these covers off?"

Yes. Oh, thank you!

"Now, just relax. I'm not going to do anything to hurt you."

Slowly, gently, he began to work my hands, my fingers, my

arms, massaging them and moving them around. Then he did

the same with my feet, toes, and legs. Everything was limp, but I

could feel the muscles moving and responding to his steady

kneading. Even as he studied the appendage he was working on,

he looked frequently at my eyes, watching for any hint of

discomfort. There was none. It just felt good to know my blood

was still circulating. As he worked, he chatted about the

weather, his department, the news of the day. His personal

commentary was much better than radio headlines.

Before leaving, Charles asked if I wanted to be covered.

No. I felt comfortable and relaxed for the moment, and I was

very grateful he thought to ask.

"Then I'll see you this afternoon." I seldom had the same

nurse two days in a row. Was there really going to be one person

in this hospital that I could count on day after day?

BED NUMBER TEN 63

Just after Bill's noon visit, San Williams, our minister of

pastoral care, arrived. He was the person assigned to hospital

visitation. San was a tall, lean, clean-cut young man. The

wisdom in his eyes belied his age.

He spoke directly and sincerely. "You know, it must really be

hard to just lie there and look around." He understood! He

zeroed in on my fears, on my feelings of desperate loneliness. He

had brought me a book of psalms from the Bible.

"I'll leave this here. Then we can read from it whenever you'd

like."

Yes. His smile told me he read my response.

"Sue, may I read a psalm now?"

Again, Yes.

Slowly, he opened the book and thumbed through to the

Forty-sixth Psalm. His soothing voice made the words come

alive.

God is our refuge and strength, a very present help in trouble.

Therefore will not we fear, though the earth be removed, and

though the mountains be carried into the midst of the

sea;

Though the waters thereof roar and be troubled, though the

mountains shake with the swelling thereof.

There is a river, the streams whereof shall make glad the city

of God, the holy place of the tabernacles of the most

High.

God is in the midst of her; she shall not be moved: God shall

help her, and that right early. . . .

The curtain at my right was losing some of its sterile plainness.

Bright, cheerful greeting cards sprouted into view when I was

turned to my side. Get-well cards had begun arriving almost

immediately—some at the hospital, others at home.

The first three arrived at home on the same day, and Bill

brought them in the next morning. After reading each one to me

and holding them so I could see them, he began to put the three

envelopes back into his coat pocket. Carol saw him and said,

"You're not going to take them back home, are you?" Before a

startled Bill Baier could respond to this earnest question, she

continued: "Why don't we just hang them on the curtain for Sue

to enjoy?"

Again not waiting for an answer, she hurried off to the nurses'

station to get masking tape. While Bill and I watched, Carol

attached the cards to the curtain, directly in my line of vision. I

loved it! Later in the morning, when I was lying on my back,

watching the clock, the perky flowers on Elaine's card caught

my attention. I could just see them with my peripheral vision,

and they provided a beautiful touch of the outside world.

Soon the first Snoopy card arrived, and inside was the sig-

nature, "George," and the paw print of his dachshund, Hure.

George was an old friend of Bill's from early in their careers

when they worked in West Texas. They have remained very

good friends over the years. Still a bachelor, George now works

for a government office in the District of Columbia. He's been

like an uncle to the girls, always sending them interesting gifts

from his travels around the world. His gifts arrive without

fanfare—no birthday, no special occasion. They just arrive.

The first week there were three Snoopy cards, all from George

and Hure. The shape is so easily recognizable that soon I could

spot the long, narrow envelope sticking out from the stack in

BED NUMBER TEN 65

Bill's hand. I'd smile to myself, knowing there was another card

from George with Hure's paw print.

In the weeks to come, as the curtain was being covered with

cards, each new addition became a link with the thoughtful

person who sent it. The brightness of the cards and the warmth

of the messages brought me much cheer.

While Hure's paw print amused me, it also reminded me of

our cat, Tiffany. She was still quite young, and I was concerned

about her. She was accustomed to being in the house whenever I

was home. But now, with me gone, she had to be shut outside all

day. Bill said she always cried when he got home at night and

was so happy to see him. Poor Tiffany. Along with worrying

about everyone else, I worried about her.

But that was nothing new. We always seemed to have a cat

that needed worrying about. One year, we all worried through

the birth of a litter that Katherine believed was her birthday

present.

I had been relaxing in the family room after getting the girls to

bed. It was the night before Katherine's birthday, so I was doing

a last-minute checklist on birthday party arrangements. Some-

how the cat had slipped upstairs. Bill saw her on Katherine's bed

when he went up for his shower, but he decided to leave her until

he finished. Before long, Katherine's sleepy little head came

through the door to the family room and she said, "Mother, I

think I heard a kitten cry in my bed." Sure enough, there lay

mama cat, purring happily as she cleaned off her new baby. Of

course, Elizabeth woke up and came running in, too.

I had grown up with cats, but this was all new to Bill and the

girls. So we had prepared ahead by reading and talking about

cats and kittens. We knew the new mother and babies should

not be moved far from the place of the first delivery, so Bill got

the box we'd prepared for the new family and placed it at the

foot of Katherine's bed, where we all settled in to watch the rest

of the births.

When the third kitten arrived, the mother pushed it aside and

wouldn't clean it. Bill had read that a cat senses when there is

something wrong with an offspring, and she won't try to help it

66 BED NUMBER TEN

at all. We got a doll's bottle and made a formula of honey and

milk, but the poor little thing never did drink.

We stayed up all through the birthing—a night for us to

share. Of course, the next day we all struggled sleepily through

the birthday party, but for a long time we talked about that

special night.

At home now, Bill and Elizabeth were getting into some interest-

ing situations. She needed money for the usual minor pur-

chases—small clothing items, school supplies. This was the first

time Bill had to concern himself with the girls' daily expenses. I

could only smile ruefully to myself. Welcome to another facet of

family life, Bill Baier!

Katherine was having exams at Vanderbilt. Bill still hadn't

told her exactly how ill I was; she didn't need that concern

during her first-semester exams. It was unusual for us to conceal

anything serious from our daughters, but this time it had to be.

Katherine would be home soon enough, and then he could tell

her the truth. At least by that time the stress of exams would be

over.

Back on my first day in ICU, Margie Hood had stopped by to see

me. I'd been very surprised when she walked in wearing a

volunteer's uniform. I hadn't known she volunteered at

Gulfland Hospital. On that day, she was just going off duty, but

she promised to visit me regularly.

Margie was a good friend from our exchange year in The

Hague. Both our husbands had been assigned to Holland for the

same year. I'd known Archie Hood in the days when I was

passing out pay envelopes at Shell. Some of the men would tease

me because I was the new, young graduate, but Archie was a

quiet, sweet person who always put me at ease. So when I

learned we were going to The Hague along with Archie and his

wife, that was an added bonus.

Bill had been sent to the Netherlands to address a conference

two years before the exchange. We'd made very elaborate plans

for me to go along on that trip because we were sure that would

BED NUMBER TEN 67

be our only chance to go to Holland together. We'd had a

beautiful week, and I'd fallen in love with The Hague.

One lovely evening, as we walked back to the hotel after

dinner, I said to Bill, "Wouldn't it be wonderful to come back

and live here?"

"Sorry. I'm in the wrong part of the company for that ever to

happen."

Then one afternoon two years later, Bill called from work.

"Are you sitting down?"

"Yes." I was by the time I said it.

"We're being sent to The Hague for a year!"

The preparations were chaotic. Bill and I had to find someone

to live in our house while we were gone, decide which things

would go with us and which would go into storage, and get

books for the girls' studies. But it was all worth it when we

finally landed in The Hague. And visiting with Margie and

Archie for the first time, I found he was as special as I'd remem-

bered him, and Margie was just as nice.

Their children were grown and had remained in the United

States, so in Holland we became one family. The six of us often

traveled together for weekends. And of course we celebrated

holidays with Margie and Archie, our extended family.

We kept in touch after returning to Houston, but Margie's

volunteer work never came up in conversation. Now, I dis-

covered that not only was she a volunteer, but she was currently

president of the volunteers' organization. Wednesday was her

regular day at the hospital; today, a week after her first visit, she

was back—and so welcome.

Bill and Mother were obviously very happy to see Margie,

too, a familiar face in this sea of strangers. Though volunteers

did not work in ICU, she offered to help Bill with anything he

might need.

It was not long before Bill did need Margie's help—to find a

shampoo for me. I don't know how many days passed without

anyone realizing my hair needed washing. I knew greasy hair

was not a life-threatening situation, which is what intensive care

is designed to accommodate, but I was miserable. I've always

thought greasy blond hair was particularly unsightly.

68 BED NUMBER TEN

One evening Luana, an Indonesian nurse, who was not my

nurse that night, walked over and said, "Your hair needs wash-

ing. Do you know that?"

Hooray! Somebody has noticed! Yes!

"Is it all right with you if I call your husband and have him

bring you some shampoo?"

Yes. Oh, thank you, Luana.

Her call, however, sent Bill into a tailspin. He had to start

looking for an instant shampoo, knowing they would not be

able to rinse my hair properly. He'd heard about the usual dry

shampoos, but those powders, he felt, would just coat my oily

hair. So he contacted Margie, who found exactly the right

shampoo in the hospital gift shop—a liquid that could be used

with or without water.

Several days passed before someone got around to doing my

hair. It was a Sunday. Bill was at church and there would be no

therapy for me, and this day there were no new critical patients

in ICU. Harriet and Bonnie came to my bedside with the news:

today I was getting a shampoo! Both had already endeared

themselves to me. Harriet was the first person in the unit to

speak kindly to me. And Bonnie's special introduction had

occurred a couple of days ago, when she came to me before Bill

arrived and washed my face. "Let's make you look nice for Bill,"

she said. And for once I did feel just a little better.

Now she and Harriet had the bottle of shampoo. "I don't

know how we're going to do this," said Harriet, "but don't

worry. We'll figure out something." How could I worry, listen-

ing to the two of them giggling?

"Bill says she has sensitive skin," Bonnie commented. "Even

though the bottle says the stuff doesn't need to be rinsed out of

her hair, I think we'd better not take a chance." I wanted to tell

them that it wasn't sensitive in the way they thought. I was

afraid they'd get discouraged and give up. While I tried to decide

which words to spell, Harriet had an idea.

"A fracture pan!" she announced. "It'll be perfect." She

dashed off to find one, and when she returned, I laughed silently

with them.

BED NUMBER TEN 69

"It is perfect," Bonnie proclaimed. And I had to agree. It was a

plastic bedpan that is used for hip-surgery patients—similar to a

regular bedpan but narrower, with a larger opening in the front.

Using a pillow and towels, they propped up my head and it fit

perfectly into the opening. They were like children with a doll,

arranging me playfully but with care. How they laughed. I loved

the sound and even being a silent part of it.

Other nurses passed by and joined the laughter. "Good grief!

Y'all found a new use for the fracture pan," one said.

The only water in the cubicle was a little sink back in the

corner, but no one ever seemed to be able to get warm water

from it. So Bonnie went to get a pitcher of warm water, and the

shampoo began. It was the nicest thing that had happened to me

since I'd been there. The water felt heavenly. Their fingers

massaged my scalp. This was real luxury. After the first rinse,

they decided to do a second wash. Hooray! They understood

how wonderful it felt. If only I could have smiled for them.

After the washing, Harriet said, "She's going to catch cold if

we don't get that hair dry." Again there was laughter as they

tried to hold my limp head and fluff the hair dry. Their hands felt

so good! It was a glorious morning.

I'd been having some discomfort with my back, but I seldom

let them give me anything for the pain because I didn't want any

extra medication. But now Bonnie gave me a hypo to relax.

With clean hair and a hypo, I was positioned comfortably on my

side and I got my first good sleep since coming to the hospital.

When I awoke, feeling clean and rested, I came alive, certain that

things were going to get better.

The next morning, two new postoperative patients arrived in

intensive care, and my assigned nurse announced she was over-

loaded. So it was back to the swish of a damp washcloth as my

bath for the day.

Every once in a while, however, I got lucky again. Often that

was when Vickie would be assigned to me for the day. Vickie

was a superb nurse. I recognized that the first time she worked

with me. She said she'd trained under Dr. Denton Cooley, the

70 BED NUMBER TEN

famous Houston heart surgeon. It was obvious she was experi-

enced in intensive care nursing. Perhaps this is why she was

assigned to me so seldom—her experience was needed with

critically ill patients.

Vickie was a vibrant, outgoing person. As she washed me—

with warm water and soap, real suds!—she laughed and talked

to everyone in the unit. She brought life into my barren cubicle.

When she talked with me, she actually communicated, telling

me about her husband, who was in chiropractic school, and

funny tales about her life at home. During a bath, she changed

the water in the pan several times to keep it warm and fresh.

Once when she was nearly finished, she looked at me with a

mischievous grin and said, "Oh, it's no fun to lie here and not be

able to get into the water." Then she put my feet into the pan,

allowing me to enjoy the bath water. She actually recognized

that I could feel\ Such a rare pleasure.

And another wonder occurred with Vickie. She brushed my

teeth! She looked at my mouth and said, "I don't know how

we're going to do this, but there has to be a way. Your mouth

must feel terribly uncomfortable."

Yes! It really did.

Since I had no muscle control, my mouth was stiff, and she

could barely keep it open. Other nurses had mentioned my

teeth, but they were afraid I might choke on the water. But

Vickie was doing it! She had to suction out the water she used, as

a dentist would. One little trickle going down the windpipe

could create real problems. But having my teeth brushed was

worth the risk. Vickie was one nurse who thoroughly under-

stood long-term patient care.

The problem was becoming clearer to me. Intensive care was

not a place for long-term patients. The staff was trained for the

normal, specialized, life-support care of the critically ill. They

were neither equipped nor prepared to handle a long-term,

totally helpless patient. A wipe for a bath was acceptable for a

day or two with a patient too sick to know or care. But regular

baths, shampooing, and toothbrushing were not part of the

routine of this department. Fortunately, to some of them these

BED NUMBER TEN 71

everyday procedures represented a challenge readily accepted—

when time permitted.

Vickie never shied from the challenge. One time she had just

turned me when she stopped to examine my bed. "Sue, you

don't have an air mattress. I can't believe no one has thought of

it. You really need one."

I had no idea what she was referring to. I did have one of the

foam-rubber pads called an egg carton, because of the contours

of the top surface. After the first few days, it provided very little

protection to my spindly body. Indeed, I was being turned so

often because everyone was greatly concerned about the pos-

sibility of my getting bedsores.

Off Vickie went to find an air mattress, but there wasn't one in

the supply department. Undaunted, she searched the storage

areas of the ICU and finally found one that had been used. "It's

not brand new, Sue," she said, "but we'll fix that. Believe me,

you won't mind a bit." She spread it out on the floor next to my

bed, got down on her hands and knees, and started scrubbing—

much to everyone's amazement. When any of the staff com-

mented, Vickie said, "Sue needs one of these, so we're going to

fix up this one." And she continued scrubbing. After she was

satisfied that it was clean, Vickie took on the next hazard—

getting it under me. She called to Marie for help. Marie usually-

worked the eleven-to-seven shift, but today it was her misfor-

tune to be on in the morning. She was more than willing to help.

I am sure neither of them realized how difficult the job would

be. They couldn't take me out of bed, because I was hooked up

with the trach, subclavian, ICU monitors, and the catheter, so

the mattress had to be inserted under the egg-carton pad and the

sheet and me.

They lifted me by the sheet and I rolled helplessly from one

side to the other. "Hang in there, Sue," Marie said again and

again. "We'll be through in a few minutes." As they lifted the

sheet and tried to hold onto the foam-rubber pad, they shoved in

the air mattress a few inches at a time. I was being rolled around

wildly, but there was nothing else they could do.

It was terrifying. My head was going in all directions, with

72 BED NUMBER TEN

saliva running out all over. Other staff told Vickie and Marie

they were crazy as they struggled with me, but they never gave

up. "Hang on, Sue, just a little longer," Vickie assured. Again

my limp body was jostled from side to side.

I did hang on, convinced from what Vickie had said that this

mattress would be well worth the struggle. And mentally I

celebrated with the two of them when they finally finished—

especially after they turned on the compressor that would keep

it inflated. The air moved my body up and down in something

like a breathing pattern. Fantastic! It shifted the pressure from

one area to another, relieving some of the soreness. In spite of

the frightening moments, I was very grateful to them both.

Later in the day, a janitor came in to mop the floor and

accidentally unplugged the compressor. I lay there for two hours

until I could signal a nurse who was turning me, and she

reconnected the machine. This would happen often. But when

the mattress was working, it helped tremendously.

Christmas was less than two weeks away and it was on my mind

all the time. I was able to accept the fact that this was where I

would spend my Christmas, but I was determined that Bill, the

girls, and my mother were going to have a Christmas, re-

gardless. I plagued Bill with things to do. His visits were some-

times a little longer now. The staff seemed to realize I was more

relaxed when he was there, so his visits were a relief for them,

too. After I told Bill about a wrinkle in the sheet, or a nurse who

couldn't understand me, I began with Christmas instructions.

After Bill mailed the cards to the Netherlands, he informed

me, "I am not going to go through your whole Christmas card

list." I protested. I had already purchased the cards. Finally he

compromised. As cards arrived, Bill prepared one in return and

wrote a brief note about where I was. Oh, I wished I could write

my own cards, but I was thankful the cards were being sent.

The staff began decorating the ICU for Christmas. With all

her exuberance, Vickie climbed up and down a ladder, hanging

garlands around the top of the nursing station. Bless them all. I

knew they were trying to bring a touch of holiday cheer into the

BED NUMBER TEN 73

lives of the patients. But, while I appreciated their efforts, it was

disheartening. I'd heard that Christmas is for many people the

most depressing time of year, and I had never comprehended

that before.

As the decorating continued, I kept thinking back to the first

Christmas Daddy spent in the nursing home. Like him, most of

the patients in the home appeared senile. When they were

singing Christmas carols and eating Christmas cookies, he

seemed oblivious. Now I couldn't help but wonder what was

going through Daddy's mind that Christmas. Had he known it

was Christmas and been unable to tell us?

Tears flowed down my cheeks. I longed to be home, decorat-

ing my house, preparing for my family's Christmas. A radio

commercial rang out, "I'll be home for Christmas. . . ." But I

won't. I can't.

Bill started his vacation on December 15. We always tried to

save part of his vacation for the holidays when the girls were out

of school, and this year he'd saved two weeks for when

Katherine came home from school. Now that time had come.

Bill was meeting Katherine's plane. I couldn't wait to see her.

It seemed an eternity since she was home—since we both were

home for Thanksgiving weekend. That Saturday she and I had

gone shopping and out to lunch, alone together with time to

talk. She told me all the things a mother waits so long to hear—

about our relationship and what it meant to her. I was so

touched. As she left for Nashville the next afternoon, I counted

the days until she would be back, planning how our new rela-

tionship could just start up again where we left off.

Finally she was at my bedside, almost frozen in place, trying

not to show her shock and disbelief. I knew how I looked. I saw

in the faces of so many visitors the reflection of my own emaci-

ated appearance. How difficult this must be for her. Driving

from the airport, Bill surely tried to prepare her for this moment,

but who could prepare anyone for this—the gauntness, the

tubes and machinery. There is no way to condition someone for

a reality such as this.

Bill looked drained. Obviously it had not been an easy trip for

either of them. Had it been the right decision to delay telling her

everything? How I wanted to hold this child, my firstborn, in my

arms. I wanted desperately to spare her this shock and horror.

Elizabeth had watched me slip away; she'd been able to adjust

gradually to my illness. But for Katherine, the overwhelming

reality was hitting her all at once.

Trouper that she was, after barely a moment's pause, she

began on the news I was so anxious to hear. "I think I passed all

BED NUMBER TEN 75

my exams." Finally she was smiling, that impish grin that said

she was feigning modesty. Katherine had won a number of

scholastic awards before graduating from high school; I knew

she would do well in college. But still I wanted to know about it

all from her. It was good to hear about her classes, new friends,

campus life. There were no awkward silences. Bill taught her

how to spell with me, and she "listened" and answered with

animation. I was enormously relieved at how well she was

handling the shock. Only months later could Mother tell me

that after Katherine left the hospital, she broke down and

sobbed, "That can't be my mother!"

The hospital staff was increasingly preoccupied with Christmas.

Most of them had families, and, as with other working people,

their minds were on decorating homes or apartments, shopping,

and holiday meal preparations—all the rushing-around that

had to be done after they left work.

"Have to go shopping tonight," Elaine said almost every day.

She made it sound like drudgery. I wished I could go shopping. I

especially loved Christmas shopping. But then I didn't have to

go to work eight hours a day and try to squeeze in my shopping

during the crowded evening hours. Getting ready for Christmas

was my job, normally, this time of year, and I thoroughly

enjoyed it. Perhaps that is why I never thought about going back

to work after Katherine and Elizabeth were born. When I had

my family, I had found the only career I ever wanted, and I was

fortunate to have been able to stay home all those years.

As I listened to all the talk of Christmas preparations, I was

faced with a frightening reality. In spite of all my frustrations

with many of the staff, I had met some excellent nurses and

therapists. But now, just as we were establishing rapport, they

were talking about taking vacations over the holidays. I was

doomed to facing strangers once again, just when I had started

to relax with a few familiar people, to look forward to a friendly

smile or a kind gesture—such as when Donna stopped in late at

night to wash my face, comb my hair, and freshen my mouth

with a lemon swab. Or the extra moment she took early in the

76 BED NUMBER TEN

morning to turn on my radio before going off duty. The break

between the night shift's last services and Bill's arrival was

particularly desolate. Everyone was busy doing paperwork,

making rounds, and reassembling for the new day, and I always

felt so isolated. It helped to listen to the weather and traffic

reports, the overnight news, and the announcer's light chatter. I

was so thankful when Donna was my nurse, and now, when I'd

just begun to look forward to her special kindnesses, she was

talking about going to California for two weeks over the holi-

days.

Three respiratory therapists had become mainstays of my

existence in ICU. Others who were good came and went. But

these three I could rely on. Peter was on days. He and Charles,

the physical therapist, were housemates, and that seemed to

draw Peter more closely into what I was feeling and needing.

James, who worked the second shift, was a close friend of both

men, and, like Charles and Peter, he began immediately to

communicate with me.

My third respiratory therapist was Kay. The first time I saw

her, she was working a day shift. Immediately I liked the sound

of her—jovial and full of fun. She explained to Bill all the

procedures for cleaning and adjusting the respirator, and

showed him how the water level must be watched. I was very

attentive also. I'd never noticed anyone checking that water

level, but I surely would Jceep track of it from now on. I was

beginning to feel that my survival in ICU might well depend on

my knowing everything about my care.

When Kay began working weeknights regularly, I felt a little

measure of security. At least during the week, there was usually

one person on each shift who came to me at regular intervals,

checked the respirator, and suctioned me, and who cared

enough to spell with me and ask if I was all right.

But now all three therapists were talking about Christmas

holidays and time off. Panic gripped me. How would I manage

to communicate without them?

My mind raced for a solution. Facing the prospect of so many

new substitutes over the holidays, I had to find some way to let

BED NUMBER TEN 77

them know what I needed. When Katherine returned the next

day with Bill, I had an idea.

Need chart, I spelled.

'What kind of chart?" they asked simultaneously.

Questions.

They looked at each other and then back to me. Suddenly the

idea clicked with Bill.

"You want a chart with questions so the staff can find out

what you need." It was half question and half answer.

Yes!

They agreed it might work. Already Katherine saw in my eyes

how desperate I was to communicate. One by one I indicated the

questions we needed to incorporate. Hot? Cold? Radio on?

Radio off? They all had to be yes and no answers. Back hurt?

Turn? Eye drops? (From all the blinking, my eyes were getting

terribly dry, so Dr. Lohmann prescribed eye drops for use

whenever I needed them. Getting someone to put them in was

another matter.)

Bill and Katherine left in pursuit of the new challenge, and the

next day they returned with my chart. It was simple and

straightforward—and I hoped it would work. They hung it on

the wall behind my bed, under the number ten.

For a few staff members the system worked, but, sadly, many

totally ignored it. Even some who looked at it seemed puzzled.

They just shrugged their shoulders, and their impatient expres-

sions said, I'm not going to bother with that nonsense. For them

I was still a silent object without awareness or personal needs.

I pleaded with Bill for private nurses, but Dr. Lohmann

informed Bill that this was not permitted in ICU. Besides, the

head nurse had assured him I was getting excellent care. It was

clear to me I had to get out of this unit, but that was impossible

as long as I needed the respirator. I was crumbling under defeat.

Ignored. Repeatedly I tried to tell Bill how frightened and

frustrated I was.

This morning it happened again. My nurse refused to ac-

knowledge any need to communicate and dumped me into a

heap after what was supposed to be my bath. How I wished for

78 BED NUMBER TEN

Bonnie again. She'd been so understanding yesterday, giving me

a good bath, spelling with me, trying to be attentive.

Now my back was sagging and my neck was twisted. I looked

for someone to help me. Bonnie walked past on her way to the

bed next to me. Surely she would get me straightened out.

Frantically I blinked my eyes, trying to get her attention. She did

not see me. Soon, en route to the nurses' station, she stopped

directly in front of my bed to respond to someone's question.

Again I tried to signal her, but she never looked at me. It was as

though my bed were unoccupied. All through the shift I watched

her going back and forth, this nurse who had been so empathetic

yesterday. Today I was not her patient, and I was invisible. I felt

betrayed, bewildered by her seeming rejection.

When I spelled this frustration to Bill, he tried to understand,

and it obviously saddened him. There was nothing he could do

but reassure me that I was safe and would be taken care of. After

all, Dr. Lohmann told him I was in good hands. Perhaps they all

thought I was too sick to know what was happening or what I

was saying.

Every day I asked Bill to call the doctor and tell him the

problems. I thought Dr. Lohmann needed to know so he could

be my advocate. It had seemed to me that every doctor Mother

ever went to told the nurses how things had to be. I just assumed

that was part of the role of a doctor. I was confounded when Bill

would come back and say, "Well, Dr. Lohmann said they're

doing just fine, Sue."

Who was Bill to believe? I never doubted that he loved me and

was very concerned, but I also knew he would want to be very

businesslike and not make ripples, because Bill Baier does not do

that. Things go according to plan, and you don't upset people.

You don't go against the rules.

"December 17: I should take her out oflCU."

—from Bill's diary

My own isolated world of fear was extended when Bill brought

distressing news from Mary Helen and Max, our good friends

BED NUMBER TEN 79

from the Rio Grande Valley. Their daughter Cathy was hospi-

talized with serious injuries from an automobile accident. That

was horrible.

Mary Helen and I went to SMU together, got married at the

same time, and had our children together. Cathy was born just

six months before Katherine, and she was like my own child.

Our families grew up together. Now Cathy was also in her first

year of college, at the University of Texas in Austin. It was break

time for U.T., as it was for Vanderbilt, and Cathy was riding

home from school with a friend when an oncoming truck pulled

into the wrong lane. The young man she was riding with was

killed.

I was stunned. Here was this child, like my own. . . . Such a

routine trip, and now. ... I felt the fear Mary Helen and Max

must be experiencing. And I could do nothing to help—nothing

but pray for Cathy and for the family of the boy who died. What

a terrible Christmas theirs would be.

Hours and days plodded on, lonely and frustrating. Bill never

failed—he came three times a day. The girls came when they

could, but they were busy with party preparations. I was deter-

mined that their lives be normal, not locked into this ICU world.

While the days were interminable, I dreaded most the evenings

after Bill left, especially if there were no other visitors.

More people were coming now, and their visits meant more

than they could imagine. Just a little time not to be alone. Each

visitor'made the time special—sometimes sad, other times

happy—but always the memories that lingered helped relieve

my desperation.

As Chickie and Hans walked up to my bed, thankful tears

came. The sight of them flooded my mind with happy memories.

Chickie and I were such close friends for so long. We graduated

from SMU at the same time and shared an apartment until we

both decided to move back home with our families. Chickie was

the youngest of six children—much younger than her brothers

and sisters. Her parents missed the bustling house, so they often

asked me to come to Houston and spend weekends with Chickie

and them.

80 BED NUMBER TEN

In fact, the first time I went out with Bill, I was staying at her

home. Chickie's father now assumed the role with me, standing

there in his marvelous, old-fashioned way, checking out this Bill

Baier. Thank goodness, Bill passed inspection. Chickie was my

maid of honor when Bill and I were married.

Over the years, the four of us became very close friends. I was

even comfortable tonight about Hans seeing me. Most men

didn't seem able to handle looking at me in this condition, but I

could relax with Hans. He was a friend, and we'd been through

a great deal together.

Chickie was busy moistening a washcloth to wipe my face.

"We had a letter from Oma, today," Hans said. "She wanted us

to be sure to greet you."

Oma was Mrs. Flick, Hans's mother, who lived in Holland.

We met her at Hans and Chickie's wedding, but I got to know

her well on our first trip to The Hague. Although she spoke very

little English, that didn't matter. She was one of those marvelous

people you can understand and relate to without language.

She told Bill not to worry about me while he was at his

conference; she was going to take care of me. The first day I was

there, Mrs. Flick took me into a little Dutch bookstore and

asked the owner for two small dictionaries. They were red,

about one-and-a-half by two inches. And she wanted both

English-Dutch and Dutch-English, in case she and I got into

trouble. At the time, America's space program was getting a

good deal of publicity, and she told the shopkeeper that I was

from Houston, Texas. He was a delightful little bald man who

spoke no English, and he became very excited and exclaimed,

"Aha! Space City, USA." Each day after that, she showed up at

the hotel, put her arm through mine, and off we went.

Two years later, when we moved to Holland, Mrs. Flick

became our grandmother, our Oma, for the year. She said her

family and ours were in America, so she would be our Oma.

"She's very excited and determined about coming for the

holidays," Chickie said. "She'll be here in about two weeks."

"Of course, we'll bring her to see you," Hans added.

Both Hans and Chickie tried to mask the sadness in their eyes.

BED NUMBER TEN 81

Before I got sick, we learned that Oma had cancer. She was

coming to America for Christmas, one last trip. And our families

were to be together again for a big, wonderful visit. We were all

concerned about her malignancy and how we were going to

handle getting through the holidays, knowing that we might

never see her again.

Hand squeezes replaced talk as they stood on each side of my

bed, searching for words. There were none. Surely they were

wondering—as I was—how my illness would affect Oma. I

hoped they did not see the tears in my eyes. Such hopes for

happy times now filled with so much sadness. It didn't seem

right. I didn't want to be an extra burden on Oma.

I felt it! A muscle above the front of my knee twitched, and I had

made it happen! I was so excited. Every day I'd been taking

inventory of my body. I was convinced that if I thought long

enough and hard enough about moving, some day I would be

able to do it. While I lay by myself, bored and desperate, tired of

counting the tiny holes in the acoustical ceiling tile, I worked

again and again to flex my muscles. Throughout the day, every

day, I tested myself. Surely something had to start moving.

Finally, it happened, and what a relief! Even though Bill had

repeatedly reassured me, and I believed him, this was the real

affirmation I needed. Here we go! Recovery is coming. I could

hardly wait to show Bill.

Leg. Watch, Bill. See it move.

He studied the leg without knowing what to look for.

Moves. Over and over I made the muscle twitch until he saw

it.

"Hey, it does move! Do it again." Gladly. Another demonstra-

tion for my beaming husband.

"Anything else moving?"

No. His smile dimmed ever so slightly. So did my enthusiasm.

But this was a beginning, I told myself. That's what we needed—

a start.

But I found it hard to cope with my disappointment and

frustration when days passed and nothing else moved. I was so

82 BED NUMBER TEN

sure that things would go quickly once they started. Yet days

went by, and, try as I might, there was no movement but that

one twitching leg muscle.

One morning Bill stood quietly at the foot of the bed. There was

the smile I fell in love with, the sparkle in his eyes. Slowly he

raised his hand, and in it was a single Tiffany rose in a bud vase.

Tears filled my eyes, but inside I was a huge, beaming smile. He

set the vase where I could see it on the nightstand. I wished I

could tell him how much I loved him for bringing this particular

rose for me today.

After Bill and I were married, I began hinting that no one had

ever given me roses, particularly long-stemmed roses—a dozen

red ones. For years I kept after him, until I finally caught on that

hinting to Bill Baier about something you want is the best way

not to get it. He likes to surprise me, not to be told what I want.

Finally, one Valentine's Day, Bill gave me six rose bushes. He

was still not buying me the ones with long stems, but I was to

have roses. One plant actually was a tree—it was a Tiffany rose.

The blossoms are pale pink with a yellow center, and the fra-

grance is magnificent. This one flower had more meaning than

anything from a florist shop. Each time I looked at it, I saw Bill's

smile again.

I hoped the staff wouldn't notice the rose. I was so afraid it

would be taken away, like the poinsettia Sally had sent last

week. That nearly broke my heart. Bill had brought in a beau-

tiful poinsettia from my high school friend. How were we to

know live plants weren't allowed in ICU? The plant was there

two days before anyone noticed—or acknowledged that they

noticed. All of a sudden, a nurse stormed indignantly into my

cubicle and snatched up my poinsettia. "What's this doing in

here? You know you can't have this in ICU." I was startled and

upset. If it had been there for two days and not done any harm,

why was it wrong now?

Everyone apparently decided to overlook the one rose next to

my bed, and Bill continued to bring me a fresh one every few

days until the frost ended the season.

BED NUMBER TEN 83

Before the regular staff left for the holidays, there was much talk

about the hospital party. The day of the party, I watched Vickie

happily move from bed to bed, caring for her patients. Though

she wasn't my nurse, Vickie waved to me and spoke each time

she passed. After work, she changed clothes at the hospital and

was ready to go to the party. I watched her putting on her

jewelry and modeling her dress for the evening-shift nurses. She

said she was going alone, and I wondered why her husband

wasn't going with her—they were newly married. The staff was

all talk about who was going to the party—husbands, wives,

and dates. It made me sad that Vickie was going alone. You just

didn't go to a couples Christmas party without your husband.

It's none of your business, Sue, I told myself. But still it

troubled me. I wouldn't go to such a party without Bill. It

wouldn't be any fun. Oh, how I'd love to go to a party with Bill

tonight.

Instead, all I could do was lie here in this miserable heat and

perspire. My nameless day nurse had bundled me up with covers

before going off duty. I felt worse than on any August day I

could remember, and I remembered a lot of them.

Even as a young girl, I always dreaded the summer heat. I

stayed wet all summer. We got our first air-conditioning when I

was in ninth grade. We had moved to the country, into a new

home that had two window units. That was magnificent! Daddy

also had the house built with an attic fan. Even on the hottest

summer nights, we could turn off the air-conditioning, open the

windows, and let the attic fan create a cooling breeze in every

room. That's what I needed now, a fan—and to get rid of these

covers.

Since Daddy owned an automobile dealership, we also had

one of the first air-conditioned cars. I was fifteen, and that was

sheer luxury! Plastic pipes ran from the rear window and fit the

curvature of the back of the car. It was quite a contraption. As

soon as we got the car, we left on a family trip to California.

Daddy was excited because we could cross the desert in an air-

conditioned car. Of course it rained all the way across the desert,

and the air-conditioning froze up. We pulled into a service

84 BED NUMBER TEN

station, and nobody in that part of the country had ever seen

such a thing. It was a small town, and people came running from

all over to look at the amazing car. But no one knew what was

wrong with it—or how to make it work again.

In spite of having an air-conditioned house and car, school

was another matter. I perspired most of May through Sep-

tember. My hair was always wet, and I could do nothing about

it. I just dripped. None of the other girls seemed to be as soaked

as I was. People used to say it was healthy to perspire in the heat,

but it embarrassed me miserably. It still does. Even in my

cubicle, I hated looking wet and sweaty all the time. Would I

ever get these nurses to leave the covers off?

Bill had developed an organized plan of attack to get the house

cleaned for the girls' party. As the invitation replies came in, so

did the offers of help from mothers of the invited guests. I was

very grateful, although I'm sure Bill wondered what he would

do with these volunteers during the party.

Gerda and Wim also offered to help. They were a Dutch

couple in Houston on the same exchange program that had

taken us to Holland. They came to the hospital every week to see

me. The first time, I was amazed at how they took this whole

ICU experience in stride. Then Gerda told of being very ill in

Holland, so she was quite familiar with intensive care. They

both inspected all my equipment and pronounced it to be excel-

lent. When they heard from Bill about the party, they were

anxious to be involved. Gerda wanted to bring food, and they

both volunteered to help in the kitchen. They weren't quite sure

just what kind of party this was, but they were determined to be

a part of it—and to help Bill.

Everyone was pitching in. Some girls from one of Elizabeth's

school clubs came to the house, wished her a Merry Christmas,

and gave her poinsettias for party decorations. The next day,

other friends of hers brought a Christmas tree and asked if they

could come back later and decorate it. Bill was overwhelmed. So

were Elizabeth and I. The girls returned on several nights and

BED NUMBER TEN 85

made cookies and decorated the tree and the house.

I was sure Bill still would have liked to cancel the party and all

the bother it was causing him, but he seemed to understand

what a lift it was giving me. I was so pleased that things were

falling into place. Even what little involvement I had with the

party helped me face the empty feeling of Christmas in a

hospital.

The night was bleak. I watched the window across the room,

and I saw flashes of lightning. It was disconcerting. What if the

power went out? Was there definitely a backup system to keep

my respirator going? It's not that I mind rain. I enjoy a rainy day,

being home alone, feeling snug and secure. That's the perfect

time to tackle a closet or a chest of drawers—to restore order

where it has been overlooked. Rainy evenings with everyone

home are mellow times. The patter of rain is soothing, a sound

of cleansing, of tranquility. I wanted to be home now. I wanted

to sit with Bill and smile over each flash of light, each clap of

thunder. I wanted to smell the fresh pine of the Christmas tree

and the garlands by the hearth—and watch burning logs crackle

in the fireplace. I wanted Bill.

But there was nothing to smell, even if I were able now. There

were no logs, no fire—just the citrus-yellow ICU wall crowned

with sagging garlands. Then suddenly the garish world was

softened and freshened by the warm smile of Mary, a neighbor

and friend. Mary and her family, which most notably included a

daughter, Jane, moved into our subdivision the same week we

did, and their daughter and Elizabeth started off to first grade

together.

Elizabeth came home her first day very excited. "I have a new

friend. Her name is Jane, but her middle name is Elizabeth, and

her daddy works at the same place my daddy does. And they live

here, too." Some time later, I met Mary in the builder's office,

and we became friends almost immediately. Our daughters are

still best friends, and Bill had told me that Jane was at the house

almost every night lately, helping Elizabeth and Katherine.

86 BED NUMBER TEN

"Jane says your girls are doing a wonderful job with organiz-

ing," Mary reported. "Of course, Jane is right in the thick of it."

Yes. Mary smiled recognition of my response. Jane or Eliz-

abeth must have explained spelling to Mary.

Helping.

"I'm not sure how much she's helping, but she's certainly

cheering them on."

Tonight Mary could fill me in on school and neighborhood

news. Bill always felt we had more important things to deal with

during his limited time, so I missed hearing the local happenings.

Mary had been so busy since taking a full-time job that her gift

of this visit was all the more generous. I hoped she would find

time to come again—and she did. Very quietly, she would just

show up at the nicest times. Actually, it was she who made the

times nice.

The weekend of the party arrived. I concentrated on last-minute

details, spelling and checking them with Bill. He took my ques-

tions and unfailingly reported back that yes, the girls had done

this or that. Meanwhile, he was also checking his own lists with

me, such items as vacuuming and cleaning the bathrooms.

When the girls came, we talked about last-minute food prepara-

tion and about what they should wear.

What would I wear if I were going to be home? What did it

matter? I couldn't be there.

"December 20: Wreaths on doors. Party guest book. Load

camera."

—from Bill's diary

Saturday, December 20. The big day. Mother came to the

hospital early in the morning. She and Bill had decided pre-

viously that if she visited me on Saturday mornings, he could

sleep in and not have to rush to the hospital. I liked the idea,

because on weekdays she always came at the same time as Bill.

BED NUMBER TEN 87

On Saturday Mother could be alone with me and have time to

share all the girl-talk news I missed.

This morning, though, was a little awkward. We both were

thinking about the girls' party, and Mother had not changed her

mind about being involved. I wished I could talk to her, to make

her understand. There was still time. She could still go to the

house today and be part of the fun. She would love it. They

would all be so glad to see her. But that wasn't going to happen.

There was no point in spoiling this time with her by thinking

such thoughts.

Mother, however, came prepared with a distraction. She

pulled a cluster of pedicure equipment from her purse. "Your

toenails need clipping. I thought this would be a good time to do

that." She started working on them. "Do you know you have

calluses on the bottom of your feet?" I knew, but I certainly

hadn't had the opportunity to notice them for several weeks. "I

brought a pumice stone today. I can just take off a little each

week, and by the time you're up again, they'll all be gone."

It felt wonderful to have Mother's caressing hands working

on my feet, and it was good to hear her news of the Bridge Club

and family friends.

Whenever Mother and I were together, we always shared

memories of our beautiful tour of Scandinavia the previous fall.

Today was no exception.

After Daddy died, Mother asked me to take a trip with her.

She had been tied down for so long. She hadn't even taken a

weekend off to go see my brother in Dallas because she wouldn't

leave Houston and Daddy. Earlier in her life, opportunities for

travel were limited by her work in the family business. Beyond a

few family vacations, Mother's only real adventure had been

coming to Holland to visit us. And that had given her a taste for

travel.

I had never traveled without Bill, but he felt I should go with

her. Mother needed a trip and she needed me with her. I thought

perhaps she was considering Colorado, or some other interest-

ing place in the United States. She always said there was so much

to see in America without traveling to other countries.

88 BED NUMBER TEN

Then one day she phoned, very excited. "I have always

dreamed of going to Scandinavia, and I've found a nice tour.

Could we do that?" My heavens, I hadn't expected Europe!

Bill thought it was wonderful. He'd been to Norway on

business and loved the country. "Because of the circumstances,

and since I've been there, I think just this once it would be a very

special thing for you and your mother to do."

We went in October and had a glorious two weeks.

Now Mother's eyes welled with tears as she said, "Oh, Sue,

I'm so happy we had that trip together before. . . ." Her voice

trailed off and she concentrated on the pumice stone.

There was no mention of the girls' party, but I understood.

Instead, she talked of cherries and olives. This was a little

tradition she shared with the girls. When they were small,

Mother always put green cherries in the bottoms of their glasses

to encourage them to drink their milk. Anyone else would have

used red cherries, but not Mother. She used green. Somewhere

along the way, she also discovered that they loved black olives.

And those, too, became special. So, at Christmas, ever since they

were toddlers, Nana has placed under the tree a little jar of green

cherries and a little can of black olives for each of them.

"Should I do it this year, Sue?"

Yes.

"It seems rather silly now. Maybe they're getting too old. Do

you think they would miss them if I just skipped that this year?"

Yes. The girls cherish all our traditions and would be bro-

kenhearted if she dropped the custom. This year, more than any

other, they needed to continue the traditions.

I checked the patch of window across the room. Twilight came

early at this time of year. In spirit I was home with everyone

getting ready for the guests. Last year, we'd had a brunch, but

this year we chose early evening, six-to-eight, for a buffet. That

way, the sixty-some guests would be free to go on to other

parties.

1 watched the time and imagined the flurry of last-minute

BED NUMBER TEN 89

activity at home. I could even feel the countdown. I hoped Bill

would remember to have all the girls sign the guest book at the

front door. And photographs . . . would he remember to put

film in the camera?

The party time arrived and so did Margie, without explana-

tion. She and Bill must have decided that she would keep me

company this evening. I don't think that she even mentioned the

party, but we both knew that she was there to be with me, and I

was grateful. She stayed a long time. Perhaps the staff also

realized how badly I needed company tonight. Or they were

relieved to have someone as capable as Margie staying with me

for a while. When she came for her regular Wednesday noon

visits, Bill was always there and time was limited. This was the

first time she and I had been alone in ages. She talked about

Archie and the children and friends here and in The Hague. And

about the good times in Holland.

"Remember Gerry?"

Could not forget.

"I had a letter from her this week. She asked about you—

wanted to know whether you still have your same white car."

Margie was grinning broadly. She must have been able to see me

smiling inside at the mention of Gerry. This marvelous Dutch

woman made an art of international hospitality and was deter-

mined to take care of all of us foreign guests in Holland.

Bill and I had bought a white station wagon to drive while we

were in Europe. Driving in The Hague is something of a chal-

lenge. Many of the American women wouldn't try, and even

some of the Dutch women exclaimed, "Sue! You're driving in

town!" But there were school activities I just wouldn't miss.

Once I learned to handle the traffic, I had few problems. I just

began driving like one of the locals. At all but the main intersec-

tions, traffic coming from the right has the right of way. All of

the streets are full of bicycles and motorcycles. Government

taxes make cars very expensive for the Dutch to buy, so they use

two-wheeled transportation and zip up and down the street in

front of you and at both sides. Driving in the middle, with all the

bicycles, is quite an experience. But I was determined. Keeping

90 BED NUMBER TEN

moving is the challenge. A milk cart will stop in the middle of a

tiny, narrow street, and it might sit there for a half hour before

the milkman returns, so you just drive up over the curb and keep

on going. I did my share of those maneuvers during the year.

But traffic was not the problem the day Gerry and I went to a

flower show in a little village out in the countryside. I picked her

up and we headed out of the city. She is a funny, jovial, very

happy person—even when issuing driving instructions. We had

a wonderful time at the flower show and then returned to my

car, which would not start. We were out in the middle of

nowhere. But Gerry said, "Not to worry." Without a pause, she

was out of the car and hiking down the road. I felt terrible,

because it was a warm day and she was a large woman—and

probably a good ten years older than I. As she marched off, she

told me to sit there and wait. Eventually she reappeared with a

man in a service-station truck. I learned later that when she got

to the station, which was a fair distance down the road, the

attendant told her he couldn't go with her. He was the only one

at the station and he insisted, "I can't close the station." But

Gerry would not be put off. She eyed him squarely and said,

"She's a visitor to Holland. Think of the image we're sending."

So he came.

He started the car with no difficulty, and soon we were on our

way home again, with Gerry assuring me, "He did it because

you're a guest in our country."

Toward the end of our stay in Holland, I walked out of a shop

near Gerry's home and found a paper stuck in my windshield

wiper. It looked official, but I had no idea what it said. I didn't

know enough Dutch to read all the traffic signs, but I recognized

most of the negative ones. I'd parked in this lot before, but I

looked around for something that indicated that I'd violated a

law. I could see nothing different.

So I showed the paper to Gerry. "What do I have?" She shot

through the ceiling. "They have changed that to a pay parking

lot just this week, but the sign is hidden," she said. "You drive

me over there."

I must admit I was concerned about the ticket. We were just

BED NUMBER TEN 91

getting ready to leave the country, and we didn't need a parking

violation, especially after going all year without any problems.

Gerry marched up to the parking lot attendant and gave him a

lecture. "You knew by looking at her license plate that she was a

visitor here," she accused. She was right. There were special

plates to identify cars of foreigners. "You knew that, and you

knew you'd just changed this to a pay lot this week and that she

probably couldn't read the sign that's hidden partially behind a

tree where nobody can see it." His face showed embarrassment.

"So, you just tear up this ticket right now." And she was so

intimidating that, without a word, he did\

Margie knew we no longer had that station wagon, but

thinking about those days was the best distraction I could have

this evening. I was so grateful she had been here to help me

through this lonely time.

After the party, Bill came immediately to the hospital to show

me the Polaroid pictures he'd taken throughout the evening. I

cherished each image, wanting to hear everything. Bill tried to

remember the names of all the girls who were there. He told

about Bess, about Gerda and Wim, and Carolyn, one of the

mothers—all working in the kitchen.

"Gerda brought a fish-shaped mousse and a dessert," he said.

"The mousse was so pretty the girls didn't want to cut into it and

destroy it."

Our girls?

"No, the guests," he said. He was smiling contentedly. "Eliz-

abeth finally cut a piece, and everyone said it and the dessert

were delicious. Gerda and Wim seemed to enjoy watching all the

excitement."

Bill assured me that everything had gone very well, and that

when Katherine and Elizabeth came tomorrow, they would fill

me in on details he'd forgotten. I could tell he was tired—and

very, very glad it was over. But I was so happy it had happened. I

had been right in insisting that the party go on. Life, indeed,

must continue for the girls. I was so proud of them both for

92 BED NUMBER TEN

being able to do it—and happy for them that this was a night

they would never forget.

I thought about Bess, Carolyn, Wim, and Gerda—in the

kitchen all evening. How was I ever going to thank them for

helping to make it work ? And Bill, dear Bill. He had done all this

for me. What did I ever do to deserve you, Bill Baier? My heart

was bursting with love.

"December 21: Hospital called 3 P.M. Overdose. Coma!"

—from Bill's diary

Bill arrived after church. How was I to explain to him what was

happening to me?

When I woke in the morning, my tongue was curled over and

back, caught rigidly between my upper and lower teeth on the

left side of my mouth. I couldn't control the muscles of my jaw

or tongue, so I was biting my tongue, and it hurt terribly. Even

when I was turned, it couldn't slide free; it was locked in by my

teeth.

Carol was on duty that morning, and I tried to spell the

problem to her, but she misunderstood. "Don't worry, Sue, you

won't swallow your tongue." I couldn't get through to her that I

was biting myself. So many words to spell when I was in such

pain. And today she had too many patients to wait for further

spelling. The more frantically I tried to communicate, the more

she assured me that everything was all right.

Dr. Lohmann came in. I was sure he'd do something for me if I

could just explain it to him. But, as always, when I tried to signal

him with my eyes, he turned away. "Oh, nurse," he said to the

closest one, "see what she wants." And he left. The nurse was

new in the unit. She looked at me, shrugged, and walked off.

Immediately after the doctor left, Bill came from church.

What a blessing. I signaled urgently.

Find Lohmann. We must catch him before he leaves the

hospital. Bill turned to Carol as she passed the cubicle and

asked, "Has Dr. Lohmann been in?"

"It's his day off," she answered and hurried away. I couldn't

believe she had not seen him.

94 BED NUMBER TEN

Lohmann here. Find.

"Sue, I've told you that it's his day off. There's no way we can

reach him. You just don't do that to a doctor." There was

irritation in Bill's voice.

Tongue.

"I know, Sue. On my way in, Carol told me you were con-

cerned. But she said you can't swallow it."

Hurts.

Bill could see I was upset, but still he didn't understand. I

couldn't get through to him. Finally, he refused to continue.

"Sue, let's just drop the subject. This is going to upset you; it's

going to upset me. Let's just forget about Dr. Lohmann."

The frustration was devastating. I had just seen the man! Bill

asked Carol if there was anything she could do. She said she

would try to reach whoever was covering for Dr. Lohmann.

By now I was terribly agitated from the pain and exaspera-

tion. Bill could see it in my eyes, but he felt helpless, so he

decided it was best for him to leave. And he did.

His departure was devastating. Tears gushed. I felt aban-

doned. What can I do now? Bill's gone, and I'm all alone with no

one to speak for me. Why couldn't he understand?

But Carol was still there. Please, Carol, understand me. She

came in as soon as Bill left. Again I spelled.

Tongue . . . teeth . . . hurts.

For a moment, she silently mouthed the words, still not

comprehending. She looked in my mouth, her expression re-

maining puzzled. But she did sense something serious was

wrong.

"All right, Sue. I'll try to get something to help you."

The doctor on call diagnosed the problem: a swollen tongue

from a reaction to the antibiotics. If they cut down the anti-

biotics, the swelling eventually would subside and the problem

would be corrected. But since I was so upset now, he ordered an

injection of Benadryl to reduce the swelling faster.

Carol handled the injection carefully. She gave such easy

shots. I relaxed, knowing I would feel better soon. But suddenly

I felt very strange. I could not see anything!

I heard people's voices—in fact, I could hear everything that

BED NUMBER TEN 95

was being said. I heard nurses rushing breathlessly, and asking,

"Oh, my goodness, what's happened?" I felt them taking my

pulse and blood pressure. More voices. "What's happened to

her? What's wrong?"

"Benadryl. She's reacting." That was Carol. I knew her voice.

It was firm and steady. "Keep watching her blood pressure." The

blood-pressure cuff was pumped up again. More voices. The

routine sounds of ICU seemed louder, distorted. So much com-

motion around me.

I was in a tunnel. I could vaguely see something round and I

had the sensation of falling. I was slipping away. But then I

heard Carol's voice close to me, steady and clear. . . .

"Sue, that shot I gave you apparently was too strong. You're

overreacting to it. Your vital signs are good." She spoke slowly,

intently, directly to me. "You stick with us, and we're going to

take care of you. You will be all right, I promise you. You're

going to make it."

I believed her. Her voice was so convincing. But I also knew I

must fight to stay alert. And fight I did.

The radio was on. The Houston Oilers were playing Pitts-

burgh, a play-off game. Bill and I always followed the games and

all the players—especially Earl Campbell, who was doing so

well this season. I made myself listen to that ball game and keep

up with every play. Come on, Earl!

"Come on, Sue, wake up. Open your eyes." It was Bill's voice

over the sound of the radio. "Katherine and Elizabeth are here.

You've got to open your eyes."

He had both girls with him and he was calling me, repeatedly

begging me to open my eyes. My mind fought to react. I was

frightened. If Bill is back already—and has both girls with

him—this must be serious. But I'm all right, Bill.

"Sue, Sue, open your eyes." His voice was close and intense.

"Wake up, Sue, wake up." I just couldn't make my eyes open.

But I did fight to keep my mind on that football game. I couldn't

let go of that game. The Oilers and I were fighting together to

win.

I don't know what time I pulled back out again. When I finally

opened my eyes ever so slightly, the girls were gone but Bill was

96 BED NUMBER TEN

still there, talking to me, trying to make me wake up. I felt

myself slipping away again. He shook me, gently but very

earnestly. "Sue, you've got to stay awake." I forced my eyes open

again and again.

Just briefly I caught a glimpse of Phil's white uniform at the

foot of my bed. Carol must have gone off duty; Phil's on the

second shift. Thinking was laborious. Then I felt excruciating

pain. Phil was jamming the head of an IV tube into the top of my

foot, the bony part of the foot. I will never forget the stab of that

needle. I thought I was going to leave the bed. I tried to open my

eyes, but they were flooded with tears. Don't you know I can

feel? How could you do that to me? Dear God, help me!

Bill kept talking to me, forcing my attention onto the football

game, trying to keep me alert. Finally, the game was over. The

Oilers and I had won! I saw in Bill's eyes the mixture of relief and

sadness. I understand why you left, Bill. It was just a misunder-

standing and it's all right. You're here now and that is all that

matters. I wanted to spell all that to him, but my eyes were too

full—and I couldn't find the energy. Some other time, Bill, I can

tell you. Now all I can do is love you. Obviously the staff was

allowing Bill to stay longer, probably until I was fully awake. I

basked in these wonderful minutes with Bill beside me, tenderly

holding my hands.

Only when Aurilla appeared to take my vital signs and turn

me did the mood evaporate. This was the nurse I felt the least

empathy from. And now, after the traumatic day I'd had, she

was to be my night nurse. Who assigns these people? I cringed

inside when she touched me. How could I explain this woman to

Bill? I had wanted him to see her in action, to see how roughly

she treated me. I wanted him to see why I felt I was just an object

to be tended.

Very abruptly, Aurilla turned me, right in front of Bill, shov-

ing the pillows harshly into my back. Did he see that? Did he

realize how miserable it was to be lumped like a sack of pota-

toes? And what could he do about her, even if he did under-

stand?

Bill stayed well beyond the evening visiting hours. It was the

longest time I'd been with him in nearly three weeks. I wished I

BED NUMBER TEN 97

could tell him that in spite of Aurilla, it was a very special time

for me. But finally he had to go.

Again loneliness—until Ginnie came for my range-of-motion

therapy. Charles had trained her to work with me as he did, and

she was a delight. I especially enjoyed her regular Sunday night

visits.

"Hi. Sorry I'm so late," she said. "Time got away from me."

As she talked, she was already working my fingers and right

arm, and her voice rang with laughter. I was glad she was late. If

she'd come much earlier, before I was fully awake, they'd have

sent her away.

Rob? I spelled her husband's name. It troubled me that Ginnie

had to work Sunday nights. She should be able to stay home

with her new husband on Sundays. It wasn't fair that she should

have to work all week and then weekends, too.

"I've parked Rob and our bags of dirty clothes over at the

laundromat again." Ginnie always understood my spelling per-

fectly, and she always talked to me, including me in her life away

from the hospital. She saw a question in my eyes before I could

spell it—even while she was moving to my legs and feet. "Don't

worry. Rob doesn't mind. He's good at laundry." I loved her

laughter. I was so glad to have her here.

When she finished, she leaned over and said, "See you tomor-

row," in a cute little whisper, as if this were a secret. In fact, none

of the staff seemed to notice she'd been here.

Bill's chores never ran out these last few days before Christmas.

The car Elizabeth drove needed new tires, he reported, and I

reminded him that Katherine had an appointment with the

orthodontist. Funny how I remembered that. And Christmas

cards still flooded in, with Bill hurriedly addressing the re-

sponses every day. Plus there were Christmas presents.

At the top of the gift list were the girls. In October, I had

bought Katherine and Elizabeth Scandinavian charms, which I

had tucked away for Christmas. Now I was glad I had them.

And there were some other gifts already purchased. For gradua-

tion last spring we gave Katherine luggage. At the time, we

98 BED NUMBER TEN

bought the complete set, reserving some of the pieces for Christ-

mas. Elizabeth was to go on her first ski trip December 28 with

her Young Life group. She'd counted on this for months, and Bill

and I agreed that, of course, she should go. In November, she

and I had shopped for her ski clothes. We bought everything

except the apres-ski boots and a few small things. So Bill and I

reviewed what she had and what she still needed.

Bill looked up from his notes. "Who's going to pay for all

these ski clothes?" He was just beginning to see how much

daughters cost!

She half. We half for Christmas. He made a note of the split

arrangement. I could see this was not going over too well, but he

said nothing. He would send her out to buy what she needed.

For years our girls had exchanged Christmas ornaments with

their cousins, Mary and Ann, in Maine. The four of them were

acquiring nice collections. This fall, at a church bazaar, I bought

some little wooden sleigh ornaments and had the cousins' names

printed on them. I spelled to Bill what they were and where they

were stored, so he could wrap them and mail them off to Maine.

He was becoming practiced at being patient with my requests.

He just nodded when I told him about buying a wedding gift for

our next-door neighbor, Julie, who was getting married two

days after Christmas. A bridal registry simplified that.

Mother once mentioned needing a new watch that she could

read more easily since her eye surgery. I knew Bill would not

want to shop for that, so I spelled to him to give her a check

toward the watch and promise her I would shop for it with her

when I was better. This was going to be a terrible Christmas for

Mother, her first since Daddy died. Having all the family to-

gether would have been especially important this year. I wished I

could do more than a promissory gift.

Fortunately, I'd been to several Christmas bazaars, so I had

purchased more gifts than usual ahead of time. They were

hidden in different places—squirreled away in a box under

another box in a closet, or in some other obscure location—in

hopes that the girls wouldn't find them. It was terribly involved

spelling out all these gifts and their hiding places, but at least I

remembered where everything was.

BED NUMBER TEN 99

I had to rely on the girls to buy my gift for Bill. I sent them

shopping for an electric shaver.

There was one little gift for Bill that I could not forget. At the

November meeting of my Zeta sorority chapter, the owner of a

good men's store had displayed gift ideas for husbands. Several

items became door prizes. He gave away a tie and a shoeshine

kit, two or three little things. Naturally, I didn't win anything; I

never do. Finally he announced two gift certificates. I sat there

thinking, wouldn't it be funny if I won one of these? And lo and

behold, for the second certificate he called out, "Sue Baier!"

The certificate was tucked away for Bill, all ready to be

slipped into his stocking on Christmas Eve. But now I had to

spell out its hiding place so he could dig it out. Even Santa

couldn't plan any surprises for Bill.

The girls would get their father his usual jar of peanuts—and

he must have his Aramis Duck, a special shower soap they loved

giving him.

The countdown for Christmas was moving in earnest. I am

sure I was more intent on it than Bill. It was obvious he—and

Mother—would prefer to skip the holidays this year. But I was

determined: there would be Christmas.

On December 22, per my instructions, Bill moved the turkey

from the freezer into the refrigerator. Thank goodness I'd

bought one right after Thanksgiving. One less thing for Bill to

shop for now.

Much as I tried to make Christmas my total preoccupation, I

was haunted by fear after the overdose of Benadryl. Two days

later, Bill finally talked to Dr. Lohmann about the Benadryl—

which had relaxed my tongue by the time I awoke completely.

When the hospital called Bill on Sunday, they'd said I was in a

coma. But now Dr. Lohmann said I had been in no danger.

Everything was fine. He'd talked to the nurses. I wondered

whether he had talked with Carol.

"Don't worry, she's being well taken care of," Bill quoted.

The Benadryl dosage I was given, Dr. Lohmann assured him,

was comparable to taking two aspirin instead of one.

I wanted to ask Bill if he remembered warning the staff when I

100 BED NUMBER TEN

was admitted that I had a low tolerance for such medications.

I'd watched the nurse write the notation. Specifically, I was not

to be given more than one aspirin. But it was just too many

words to spell.

I was no longer afraid of the disease, but of the system.

I could see Bill's frustration. His face showed his doubt. Who

was he to believe? Was he beginning to sense that something was

inconsistent? Yet Lohmann was a doctor, a person in authority.

If he stopped trusting my doctor, what else did he have to go on ?

And always, Bill believed, one had to get along. Making trouble

was counterproductive. Besides, he could see I was still very ill.

He must have wondered if it was getting to me, just lying there

day after day with nothing to do. How could he know what was

real and what was imagined? Oh, Bill, I am not imagining these

problems.

Frantically, I spelled to him. No sleep .... Tests ....

Pain .... Lights .... Need signal for attention. He wrote

every word, with patience. He would see what he could do.

With Katherine back in town and Elizabeth on vacation, I finally

had some time with my daughters. They came separately to tell

me all about the party, their friends, their plans. Katherine had a

date this week with a young man from Vanderbilt. I always

knew everyone the girls went out with, but not this young man.

Though she was eighteen and away from home, I was still

concerned about whom she would be with, and I longed to meet

him. The following day I listened to her description of the

evening. They'd had a good time, and he asked her to go out to

dinner with him and his parents on New Year's Eve. New Year's

Eve—and to an elegant hotel dining room. Normally, I didn't

like the girls being out on New Year's Eve, but this would be just

five minutes from our home. Besides, they would be with his

parents. Even though I did not know them, it should certainly be

all right.

It was good that this reasoning rambled in my thoughts. Of

course Katherine did not need to ask permission; she was a

college student. But mothers never stop being concerned about

their daughters.

BED NUMBER TEN 101

My girls' frequent visits reminded me of Cathy, still hospi-

talized from that dreadful accident. I could imagine what she

and her parents had been going through. Bill had talked with

Max and was assured that Cathy was doing well—under the

circumstances. How difficult this must be for Max, a doctor, to

wait out the recovery of his own daughter. Since I'd gotten sick,

Max had given Bill so much support. Bill often called him for

reassurances and explanations of my condition, and he always

seemed to feel better after their conversations.

I worried about Cathy and I especially wished I could be with

Mary Helen, to share her burden. But I could be of no help now

to my friends—or to anyone.

Christmas Eve came too quickly. I wasn't ready. I still couldn't

accept the idea that I would not be home with my family.

In the morning, Bill stopped at the office to water his plant

before coming to the hospital. I was waiting impatiently for him.

More lists. I had to stay mentally busy. I ran through the menu.

They were to have turkey and dressing—everything. There was

a packaged cornbread stuffing mix that we all liked, and it was

very easy to prepare if they followed the directions. They must

have sweet potatoes, though they'd probably use the canned

ones, topped with marshmallows. I always made a gelatin salad.

"No," Bill said. "I'm not going to fool with all that." They

would just have spiced peaches.

Appetizers and desserts were no problem. They had received

so many Christmas goodies.

We finished with the menu and moved on to last-minute gifts.

Suddenly that morning I'd remembered our niece Mary's birth-

day. Bill's sister, Barbara, and I decided years ago that we lived

too far apart to know what the girls liked or wanted. We just

send checks for all birthdays.

That reminded Bill he hadn't mailed our usual Christmas

checks to his parents. With them, too, it was hard knowing what

they could use, so our custom was to send money for something

special. I was sorry these remembrances would be late, but I

knew they would understand how busy Bill was now. He wasn't

too busy, however, for one more special thoughtfulness this

102 BED NUMBER TEN

morning. Elizabeth had noticed that my legs needed shaving, so

Bill had brought my shaver. Before going off with his list of last-

minute errands, he shaved my legs and underarms.

As he left, my mind was still racing. Had we covered every-

thing? What else should I be remembering? When he blew a kiss

and waved good-bye, I suddenly knew it just didn't matter.

There was nothing I could do now to help make Christmas

happen—or to stop it from coming. Now my world felt very,

very empty.

Early on Christmas Eve night, the three of them came—Bill,

Katherine, and Elizabeth—wearing their bravest smiles and

carrying a tiny plastic Christmas tree, about eight inches tall,

bedecked with little bows. After the poinsettia experience, Bill

knew they couldn't bring in anything live, except the roses he

continued to smuggle in.

It was so thoughtful of them to bring this little tree, but so sad.

I've always disliked artificial trees because they don't smell like

pine, so we always put up real trees, with all the mess that

accompanied them. This little plastic tree was almost too much

for me to bear. I fought back the tears and tried to show a smile

in my eyes.

Thank you. Spelling was easier tonight than spoken words

would have been. The lump in my throat didn't show.

Bill and the girls were due at Maurice and Nancy's for dinner

at seven o'clock. That would be nice for them, a good break

from the somberness of home and the hospital. Maurice, an old

friend of Bill's from Rice, was from Houston. His parents had

always been good to Bill, treating him like a son, since his own

parents lived so far away. They'd also invited Mother, but she

didn't know them well. Tonight she preferred being with a close

friend of hers. It was going to be a rough Christmas Eve for

her—for all of my family.

Bill was looking at his watch. This visit had to be brief, but I

wanted them never to leave. I tried not to let their dinner

invitation bother me, but it did. I was being selfish, but tonight I

couldn't control my feelings. I felt left out, cheated.

The night was bad. The third-shift respiratory therapist was

BED NUMBER TEN 103

from an agency and not good at all. He wanted to be helpful and

he was friendly enough, but his suctioning never helped me. I

still felt full every time he finished.

If he was a frustration, nursing care that night was worse. I

was assigned to Louise, a nurse who didn't seem able to deal

well with the English language, which created a problem when it

came to spelling. She meant well, but she just kept saying,

"What do you want? What do you want?" There was no way to

communicate with her.

"Maybe you want to turn." When turning me, she repeatedly

asked if it was all right, but she couldn't understand my re-

sponse, and the harder she tried to position me comfortably, the

worse it got. I have never been in such bizarre positions in my

life. There was no way I would sleep this Christmas Eve with

these two tending me. I just watched the clock and prayed for

morning and the new shift.

At six-thirty, I felt we'd make it. But before the new crew

made rounds, Louise returned, still determined to help me.

"Maybe your back hurts," she announced. "I'll give you a

shot."

I reacted vehemently, but of course she didn't comprehend.

Bill, Mother, and the girls would be here early this morning. I

didn't want a shot that could knock me out. She paid no

attention to my protestations and gave me the hypo. There was

nothing I could do, nothing but fight sleep.

Minutes after the hypo, the respiratory therapist prepared to

leave. On his way out, he walked past my bed, smiled, and said,

"Merry Christmas!" This was the first time this season I'd heard

the greeting, and I plummeted to the depths of dejection.

The morning staff made rounds and Louise announced that I

was resting comfortably. At least the fury I felt helped me stay

awake.

Soon, Bill, Mother, Elizabeth, and Katherine paraded in. On

our fall trip, Mother and I had met a couple who carried

automatic folding umbrellas that snapped open with the push of

a button. Throughout the trip we fought with our pesky old

umbrellas, repeatedly resolving to get one of those new models.

104 BED NUMBER TEN

Now my beloved four walked up to my cubicle, all smiles, while

Katherine extended a small umbrella. Suddenly she pushed the

button, and up flew the open umbrella, as they all shouted,

"Merry Christmas!"

Elizabeth was carrying a huge stuffed dog sent to me by a

woman from the office at Lee High School. Bill held up a little

shopping bag lined with pink tissue paper. In it were earrings

that he and I had selected before I got sick. Mother, her eyes

brimming with tears, stood patting my feet. Everyone was try-

ing to be joyful, but this must have been the saddest sight in the

world!

And what did I do? I immediately told Bill about Louise and

the hypo. It was a downer for all of them. The brave, happy

expressions drained from all four faces. I should have waited,

but I thought maybe something could undo the shot if Bill knew.

Of course, we both knew there was nothing to be done.

I hated what I'd done. Here they were, all wishing me Merry

Christmas and trying so hard to be cheerful, and I ruined

everything. I was the one who'd insisted this be a normal, happy

Christmas for them. I'd put Bill through so much trying to make

sure that everything could go on as always, and now what good

cheer they'd managed to summon was trampled.

They stayed on, struggling to find things to say. Mother told

me she was waiting until we could go shopping together to buy

my Christmas present. She just couldn't do it now, she said. She

bit her lip, obviously wishing to take back the words. Finally it

was time for them to go home for breakfast and to put the turkey

in the oven for dinner. Bill promised he'd be back after they got

things started. They left, and my Christmas gifts went with

them. They wanted to leave the stuffed dog, at least, but there

was no room.

Tears gushed. I had won the battle against sleep, but I felt I'd

lost everything else as I watched them leave. I'd wanted this to be

a good Christmas for my family, but I killed it for them. Why

was this happening to us? I prayed earnestly for this burden to

be lifted from all of us. I didn't blame God for my illness,

and I wasn't asking for a miracle. I just needed to know that

BED NUMBER TEN 105

this was going to end. Please, God, give us all the courage to

make it through whatever lies ahead. Our Father, who art in

heaven. . . .

The intensive care unit was nearly empty of patients. Everyone

who could leave left before the holidays, and there were no new

surgical patients. Surely no one who had a choice came in to the

hospital for Christmas. Two smiling nurses walked into my

cubicle and announced that I was their patient today. Like most

of the others this week, they were strangers. I wondered what to

expect.

"I'm Kathleen, and this is Judith." Kathleen had sparkling

eyes and a great laugh.

"Hello, Sue. You look like you might like a bit of attention

this morning. Would I be right?" Judith's smile was so warm and

kind, and her voice was thick with a beautiful, rich Caribbean

accent.

Yes. If only she could know how badly I needed attention. Or

perhaps she did. As soon as they began talking, I knew these two

were wonderful. Where did they come from?

"We are going to take care of you this morning," Kathleen

announced, and I knew she meant it. They began my bath,

talking to each other—and to me. They were friends, and both

had volunteered to spend this day in ICU. Their friendship was

evident from their easy banter. It was obvious they were caring

women, as they tried to master my spelling. And they were very

concerned about making me comfortable.

After a long and thorough bath, Kathleen asked, "Do they

brush your teeth?" Aha! These are good nurses.

Yes.

Next they tried to figure out how to do it. It was fun listening

to the two of them speculate on ways to accomplish the brush-

ing. While they were trying to think of the alternatives and study

the merits of each, they made it a little game. For most of the

morning they created a distraction, doing what they could to get

me through this difficult day.

A little later, after I'd rested a bit, Judith came back to the

106 BED NUMBER TEN

cubicle and stood looking down at me, smiling warmly. Gently

she lifted my head and shoulders, cradling me in her full, brown

arms with an easy rocking motion. Then, softly, she began to

sing island lullabies to me. Her deep, resonant voice was so

soothing and caressing. My tears ran freely, releasing much pain

and sadness.

During the quiet times of that morning, I watched the clock

and could envision the family at home. We had a special Christ-

mas morning routine, established over the years—including the

same breakfast menu I had as a child. With Mother there, I knew

everything would go just right. She had welcomed the girls into

the kitchen since they were little children, so they all worked

together smoothly. How I would love to peek in on them,

scurrying around the kitchen with breakfast and dinner all

going at once.

When they returned in late morning and found me in better

spirits, there was a look of relief on all their faces. Katherine and

Elizabeth were wearing their charms as necklaces—how pretty

they looked. They both were chattering away, telling me about

all their gifts. Bill smiled at me—surely remembering, as I was

doing, the early years when the girls rushed to tell us what Santa

brought them.

Bill was also buoyed by Christmas phone calls. He'd talked to

the Baiers in New Jersey. With one phone call he could talk to

most of his family. His mother's brother is married to his

father's sister, so they are essentially all one family. Because

Bill's father is bedridden from a stroke, they all congregate at his

parents' house for any holiday. It was nice to hear about all their

news and messages of love. Bill also brought love from my

brother, who lives near Dallas. I felt a little touch of Christmas

reality as he delivered the messages.

Soon other Christmas visitors arrived. The pediatrician who

was our family doctor stopped by with her husband. Bill had

forewarned me that she was coming and that she was feeling

responsible for my illness, since I had gone to her for a flu shot

several weeks before I got sick. I didn't want her to feel guilty.

We felt sure there wasn't any connection between my flu shot

and Guillain-Barre.

BED NUMBER TEN 107

When she saw me, she looked so devastated that I started

crying. I understood what she was feeling, and I appreciated

what it took for her to come here, especially on Christmas. I

wanted so much to reassure her that this was not her fault. She

didn't seem to notice Bill and the family. She just looked at me

for a long moment, then turned away abruptly and left. I felt

very sad. She was gone, still feeling responsible.

There was hardly time for me to compose myself before the

arrival of Paul, the associate minister who worked with the

youth at church. We knew him through his work with the girls'

groups. I was touched by the generosity of his coming in on such

a holiday. After initial pleasantries, his face became somber as

he spoke of Nancy, a charter member of the church who was

loved by all the congregation. "Nancy is in intensive care also,

Sue. You might say a prayer for her." I heard Bill gasp.

Yes. But I had so many questions.

"She's had a heart attack. We don't know if she'll make it."

Nancy was a dear, thoughtful woman. I had just received a

postcard from her a few days ago. It was unthinkable that she

could be so ill now. The reality of it brought me up short. I

wasn't the only person in the world in intensive care. And Paul

wanted me to pray for her—that was something I could do for

someone else. I wasn't totally useless.

Paul didn't stay long, but he helped me extend my world of

concern beyond myself and the family. Now I had Nancy—and

Cathy—to pray for. He had given me a new, positive sense of

responsibility.

The nurse I had for the evening shift, three to eleven, was

another Christmas gift. Carolyn was tall, nice looking, very

articulate. I had never seen her before she announced herself

with the nicest words. "I am at your disposal this evening. We'll

do anything you want to do."

Shampoo!

"All right. Shampoo it will be," she said. "Just as soon as your

company leaves for the night, we'll start."

Throughout the day, during quiet times, I looked around the

unit. Many visitors came and went, but two patients never

108 BED NUMBER TEN

seemed to have any. How tragic to be left alone on Christmas.

Had they no one, or were they just forgotten by people too busy

celebrating the holiday? Perhaps they were too sick to notice. I

almost hoped so.

Bill returned alone in the evening. I was so pleased with the

nurses all day that I couldn't wait to tell him about them. I

spelled to him that I had another good one this evening, and she

was going to wash my hair. His smile showed relief.

Finally, Bill and I could shut out the rest of the world and have

a few precious, peaceful minutes together—just the two of us,

touching one another. At least I could share with him this tiny

part of our traditional Christmas—these quiet, reflective mo-

ments at the end of the long, busy holiday. Silently I told him

how much I loved him and thanked him for making my Christ-

mas just a little more bearable by doing all those things I had

asked for at home. What am I ever going to do for you, Bill, to

repay you for all this?

That night, clean, fresh, and positioned comfortably, I settled in

for a good night's sleep. Considering where I was, this was as

good a day as I could have hoped for. This couldn't be a merry

Christmas, but there would be other Christmases. I closed my

eyes and pictured Bill and me at home together in front of the

tree. Tonight, nothing else mattered. Through it all, I had Bill,

Katherine, Elizabeth, Mother. I felt so loved. Certainly nothing

could take that away from me.

During rounds on the day after Christmas, I watched hopefully

for the three substitute nurses who had been so kind to me, but

they were not there. Some of the regular staff did return from

vacations, and I was relieved when I saw a few whom I knew. I

hoped life would get back to normal again.

I was happily surprised that night when Peter was my respira-

tory therapist for the eleven-to-seven shift. That was unusual for

Peter—he always worked days. Early in the shift he walked past

my bed and looked up at the fluorescent light in the passageway

over the clock.

"This light's still on," he said indignantly. "You've got to go

to sleep. I'll go find a switch." Off he went in search of a switch,

only to return looking very disturbed. "Sue, that light doesn't

turn off!" How well I knew. But he was the first person who ever

noticed or was concerned about that abominable light.

My nurse for the shift was new to intensive care. La Vonne

knew I was supposed to be suctioned when I was repositioned.

That was standard procedure. I'd watched it done so often, I

could do it to myself if I were able to move. Several times, when I

was heavily congested, my bed had been tilted, head down, to

allow more of the phlegm to drain, but generally the procedure

was done through the tracheotomy opening. The cap on the

connection of the trach tube and respirator hose was removed,

and saline solution was dropped into the trach to provide a

medium for suctioning the lungs. Often the nostril opposite the

NG tube was also suctioned. The respiratory therapist usually

did all this, but it was time for the nurse to turn me, and Peter

was not in ICU just then.

She called to Bruce, who was sitting in the nursing station. "I

don't know how to suction," she said.

109

110 BED NUMBER TEN

He looked up only briefly. "Oh, there's nothing to it."

"I'd be afraid to do it. I don't want to hurt her." She was

standing by my bed; he remained seated at the desk.

"Oh, put in a couple of drops of saline and just do it." I could

see she was frightened, and I couldn't understand why he

wouldn't get out of his chair to show her. "There's nothing to it.

You can't hurt her."

I felt her fear, and it was scary. She just barely went into the

trach tube and tried to suction quickly. Nothing came. The

drainage was still there when she left.

I was very happy to see Peter return, since my breathing was

becoming difficult. I tried to tell him what happened, but my

tears got in the way.

Our neighbor Julie's wedding was December 27. She had asked

me to be a member of her house party. That was quite an honor,

since I would have been the only older person in the party. I

wanted so much to see her walk down the aisle, to help serve

wedding cake or pour coffee at the reception. Bill, Katherine,

and Elizabeth went to the ceremony, and Bill slipped away from

the reception early to come to the hospital. He was getting much

more observant about details he knew I enjoyed hearing. Eliz-

abeth left the reception early too, he said, to finish packing for

the ski trip, which began the next day.

Would she remember to take enough warm socks?

Early in the morning, Bill brought in Elizabeth to say good-

bye. She had cut out the wedding portrait from the morning

paper and held it so I could see as she described Julie's gown and

mantilla. Julie looked lovely. That young man was very lucky to

be getting such a sweet bride.

I asked her about the socks. Yes, she had plenty.

Be careful.

The sigh indicated her resignation to hearing those familiar

words.

"Yes, Mother, I promise. I will be careful." Then she was off

to meet the other skiers and catch the bus that would travel all

day and night to the snowy slopes of New Mexico.

BED NUMBER TEN 111

I was glad that she was able to go, but I was also concerned

that she have a safe trip. They would be on the highways a long

time, with all the holiday travelers and the bad weather that can

blow up in West Texas and New Mexico.

The first time my respirator alarm sounded, I was terrified. I'd

heard other patients' monitors go off and I knew it brought

immediate attention, but I wasn't prepared for the proximity

and the loudness of my own alarm. In the beginning, the alarms

did bring immediate responses from the staff. But once they

"knew" I was stabilized, they became less concerned, more

casual.

Little things, such as a loose sensor, could trigger the alarm.

Because of the difficulty of turning me, keeping the sensors

attached was a constant problem. If the nurses were busy and

felt sure I was all right, the alarm was a frustration to them—like

a baby crying when its mother is dressing to go somewhere. A

nurse would come to the cubicle, often obviously annoyed, and

try to stick the sensor back on me. Usually that didn't work, and

he or she would have to get a little kit and change the sticker, a

bothersome task. In time, I became less frightened of the alarm,

but I never overcame entirely the anxiety brought on by that

piercing sound so close to my ears.

This night, when the respirator triggered the alarm, Bruce was

my nurse. He was sitting at the desk in the nursing station—

studying. He glanced over at me with that why-are-you-bother-

ing-me-now look. Finally he set down his book and came to

check the machine, found nothing wrong, and reset it. Then it

happened again.

After several tries, he said, "You're fine. You're just going to

have to live with that. I can't do anything about it." With that

pronouncement, he returned to the desk and his studying. He

never even tried to call anyone. While the alarm screamed in my

ear, I knew the clamor had to be bothersome to him and

everyone else in ICU, but no one did anything about it. I was

Bruce's patient. After what seemed like an eternity, a relief

therapist came running into my cubicle.

112 BED NUMBER TEN

"How long has this alarm been sounding? Why didn't some-

one call me?" He was asking the wrong person.

Of course, I gave Bill the report on Bruce during his morning

visit.

That night I had Louise again, and she force-fed me too much,

too fast. I got a terrible case of gas. It was so unbearable that the

charge nurse finally ordered that an antacid be poured down the

tube to give me some relief. Then I was left in a heap again

without my back-support pillow, and for two hours I tried to

signal for help while I felt myself slowly falling over.

I was becoming terrified of Louise. Again I had to spell bad

news to Bill in the morning.

Torture.

He looked startled, so I painstakingly spelled out what she

had done.

Igno . . .

"Ignored," Bill repeated before we finished the word—some

words I spelled frequently to him. Except for performing the

required procedures, most of the nurses walked past me, never

looking in so I could signal them. Please look at me, I pleaded

silently. But it did no good. I tried to tell Bill that I must have

someone with whom I could communicate.

"Sue, you know Dr. Lohmann said you can't have private

nurses in ICU. It just isn't done."

Oh, please, Bill. Think of something. If only he realized how

atrocious it was to be locked in this helpless, voiceless body.

"Sue, they can see you. You're right by the nurses' station.

What more could you want?"

He still didn't understand. He had never even been hospi-

talized. How could I tell him that I want to be turned when I am

sore and tired, not just when a clock or someone's mood indi-

cates it's time. I want to be made comfortable. I want my mouth

freshened and the perspiration washed off my face. I want to be

looked at, talked to, seen as a human being. I want the same

things any patient needs. But the others can speak; I can't. When

you or someone else who communicates with me isn't here, right

by my bed, I am shut out completely from the world and this

ICU.

BED NUMBER TEN 113

I could see the other patients using their call buttons, and the

nurses responding to them. The call button is always clipped

onto the pillow or bed after the sheets are changed. It is some-

thing nurses know is important—the patient needs to be able to

call for help. But I was paralyzed; I couldn't move.

"You just have to try to get along with the staff, Sue." How

can I try to get along with them when they won't even look at

me?

Bill was wiping raindrops off his glasses as he came in for his

evening visit. "It's been like this all day," he said, "just a steady

drizzle."

Luzern.

He stopped wiping for a moment, then a broad smile crept

across his face.

"Yes, like in Luzern. But you know Houston—rain slows

traffic to a crawl." He put on his glasses, looking out of them at

various angles to be sure he'd wiped off all the spots. Finally he

settled into the chair next to the bed. "That was a good day,

wasn't it?" I could almost see his mind drifting into a wistful

reverie.

At the end of our first trip to Holland, we took a short Rhine

River cruise and then traveled by bus to Luzern, Switzerland.

The next day, we were scheduled to go up the mountain, but

when we awoke, it was cloudy and rainy. Undaunted, we

donned our raingear, protecting ourselves from head to toe, and

took off on foot to see the city. We were delighted by the neat,

charming houses, the bridges over the lake, the ducks and

swans. We splashed through puddles, dashed in and out of

shops, and played in the rain all day, like children.

The year we lived in Holland, we again visited Switzerland,

and this time we did go up the mountains. The scenery was

exquisite, breathtaking. But nothing could quite measure up to

that funny, carefree day the two of us spent falling in love with

Luzern.

I'd asked Bill repeatedly to figure out something that would

work as a signal. I didn't know what it might be, but knowing

114 BED NUMBER TEN

how creative Bill is, I knew he could improvise something. And

he was trying.

I was still able to twitch only my one leg muscle—nothing

else, no matter how hard I tried. Bill watched me push that

muscle again and again. Finally, one noon he was grinning

broadly when he arrived carrying a package—jingle bells!

It was a foot-long strap of sleighbells, each bell a couple of

inches in diameter. He laid the strap across my thigh, position-

ing it carefully so it wouldn't slide off.

"Now, move that muscle." I did. The strap fell off my leg and

the bells jingled. It worked! A nurse passing by stopped to see

what the sound was, and Bill was very pleased to explain to her,

and the other staff, that this would be my call bell. He showed

them exactly how to position it. Everyone agreed that it was a

great idea—even the ones who never before considered me as

human or conscious. I'm here, I wanted to tell them. I've always

been here.

Now I had a way to attract attention. But I knew I had to save

my signal for my most desperate needs. If I didn't, everyone

would start to ignore the one-shot sound. I also realized that I

must wait to call until someone was nearby who could spell with

me. But I did feel more secure knowing that I finally had a "call

bell."

Happily, Sandra was somewhat responsive to the bells, and

she immediately learned to replace them correctly after answer-

ing the call. But too often, she heard the call and sent back the

all-too-familiar "in a minute, Sue"—such as the night she was

having coffee with a group of nurses in the station. That "in a

minute" lasted thirty-five minutes. It seemed an eternity, not

only because I needed straightening, but also because once I let

the bells go, I had no way of calling for help in case of a real

emergency.

If Sandra was tuned in, she could be great. But she seemed

easily distracted. One night she had to change me, and before

she was half-finished, Craig came by. Leaving me uncovered and

ill-positioned, she went over to talk to him. Nurses are supposed

to pull the curtain closed when they work on a patient, but she

hadn't done it. So there I lay, totally exposed, for forty-five

BED NUMBER TEN 115

minutes. Occasionally she'd look back toward me and say, "I'll

be right there, Sue." All I could do was lie there, watching the

clock and crying. I felt stripped of all dignity. I have always been

a very modest person, reserved and proper. This was ugly, and

there was nothing I could do.

But when Sandra finished, she positioned me comfortably

and carefully replaced the bell strip, completely unaware of how

I had been humiliated.

A young patient was rushed into the unit. I'd seen him several

times before in his wheelchair, visiting the staff. He always

stopped by to talk to me, too. He'd been a long-term patient a

while back and seemed to understand how I was feeling. It was

obvious that the whole hospital loved him, and it was easy to see

why. He was bright and pleasant to everyone. A nurse told me

he'd been in a sledding accident and would be a paraplegic the

rest of his life. Now he was placed on a tilt bed. Pneumonia

again, they said; a chronic problem for him. I could see him just

across the unit and one cubicle over from me. He was so young,

only in his late teens, and he would have this problem the rest of

his life. Here I was, unable to move and feeling sorry for myself,

but I was lucky, knowing that someday I was going to walk

again. He didn't have that hope.

I spent a great deal of time looking about the unit at the other

patients. I saw them being brought in from surgery or the

emergency room. They were all very sick and were hooked up

immediately to monitors and often respirators. I saw doctors

doing tracheotomies, and each time I felt a sense of apprehen-

sion. I felt sad for their worried families—and even worse for

those who had no families to be with them. I wished I could

move and talk so I could let those solitary ones know that I was

pulling for them. They needed to have someone cheering them

on, wanting them to get well. I knew now, more than ever

before, how important that support was. But I was so useless,

unable to help anyone.

Then I remembered Paul's asking me to pray for Nancy. That

was something I could do for her and for the patients here—pray

for them! Even if they were unaware of me, those who were all

116 BED NUMBER TEN

alone here would have someone pulling for them. I felt a bright,

new sense of involvement, of worth.

One morning I watched the clock, very anxious for Bill to arrive.

I always watched that clock for him, but this morning I had a

treat for him, something good to report. Bill got out his book to

take down the words. He always looked so dejected when I

started right in as soon as he got there. By the third word, his

face lit up.

Really good night. What a difference good nurses make.

He showed me the star he put in front of that message. Good

news didn't come that often.

Weather forecasters were warning a cold night. I hoped Bill

would remember to take in the plants. Everyone in the unit was

talking about the weather, and I could feel the temperature in

ICU cooling off. Suddenly I was startled to see Charles standing

at the foot of my bed.

"It's cold out tonight." Surely he hadn't come to give me a

weather report. I wished I could smile at him. Charles always

brightened my cubicle when he was there. "It gets cold in here

when the temperature goes down."

He remembered some socks that Bill had brought when he'd

begun the tennis-shoe search, and he tugged them onto my feet.

What a struggle!

"There. Those will keep your feet warm."

I'd already asked the nurse to cover me with a sheet, but

Charles reached for a blanket and pulled it over the sheet. For

the first time, a blanket felt good. After he had arranged the

cover carefully, he stood for a moment and smiled. "There,

that's better. Have a good night's sleep and I'll see you in the

morning."

The next day Peter was cleaning my respirator. "I hear you

had a visitor last night."

Yes.

Before I could say more, he said, "Charles slipped out from a

dinner party and came over to the hospital because he was

BED NUMBER TEN 117

afraid you'd be cold and no one would notice." My heart filled

with smiles. What a kind man.

Bill was pleased by Charles's thoughtfulness—and happy the

socks finally had been put to use. His search for high-topped

tennis shoes had proven futile. My feet were too difficult to fit

and that style was impossible to find in this day of jogging shoes.

He had been told he could abandon the mission after Charles

had positioned a board at the foot of the bed to brace my feet

and keep me from sliding out of the bed. My feet and I were

grateful.

Bill had been trying for several days to call Dr. Lohmann to find

out officially how I was doing. It was very hard to get through to

him.

"I finally reached him today," Bill said.

News?

"Nothing new. He says you're doing fine." Before I could

react, he continued. "I told him it was hard to catch him at the

office, so he said I should call him at home." I could see that this

made Bill feel good, and it would make things easier for him.

This was more like the Dr. Lohmann I remembered. He had

always made himself available when Mother needed him. If only

he could see me as he used to when I was with Mother—as a

person, not just an object to be reported on.

One day James noticed I was showing some lung power, but the

slowness of other responses following my leg twitch taught me

that I couldn't let myself get too excited about one little sign.

The next day, the lungs did nothing on their own, but a day or

two later, they again showed some indication of being able to

work. Now I allowed myself more optimism.

Bill kept me posted on Katherine's New Year's Eve plans with

the young man from Vanderbilt, and she came in herself, won-

dering what to wear. The previous year, we'd found a long, plaid

taffeta skirt in red, green, and black. Perfect for the holidays, we

had thought then. And it would be lovely with her green silk

118 BED NUMBER TEN

blouse. Katherine's eyes lighted up when I reminded her of the

skirt. It was so good, so natural to be with her, happily anticipat-

ing her New Year's Eve.

Bill also brought news of friends. He had received many calls

during the week, and he listed each one in his diary. His friend

George from Virginia had taken his mother to Hawaii for

Christmas, and now he was back, checking on me. During the

trip, they'd sent me several postcards, beautiful scenes I recog-

nized. I had gone to Hawaii after my first year of work at Shell.

The maid of honor at my mother's wedding lived there, and she

had always wanted me to come for a visit. So that's where I went

for my first real vacation. And what a trip! My bedroom looked

out over Diamond Head, and when the moon was out, I could

see its form against the shimmering water. I was given the

insiders' tour of Oahu, and Mother's friend and her husband

arranged for the son of a friend to be my escort in the evenings.

Her husband was in the import-export business and knew all

the managers and maitre d's of the best nightspots. Every place

we went, we had front-row tables and the best of attention. I

hadn't started dating Bill then, but I had met him. If I hadn't, I

just might have looked into getting a job in Honolulu and

staying there. It was a lovely fantasy world.

George remembered hearing me wish that Bill and I could go

to Hawaii together, so he wrote in a card that this was a perfect

time to get Bill—while he was feeling concerned about me—to

promise a trip as soon as I was better. From the twinkle in Bill's

eyes, I gathered that George had given him the same message on

the phone. That would be fantastic. I would continue to think

about that suggestion during my hospitalization!

Bill's best news was that Cathy was out of the hospital and

Nancy was out of ICU. Good news was always welcome—

anything that turned me away from concerns for myself.

The week after Christmas went quickly. Bill was more relaxed

and had more time to stay with me. Also, he felt more comfort-

able making longer visits; the staff seemed relieved to have me

taken care of for a while. Each time, Bill still took a handful of

tissues and swabbed out my mouth and wiped off my face.

BED NUMBER TEN 119

New Year's Eve sneaked up on me. I dreaded it. We had a

tradition of getting together with Chickie and Hans for the

evening. Tonight would be so lonely.

When Bill and I were married, Chickie had just met Hans.

They were married soon after Katherine was born. From the

beginning, the four of us enjoyed being together. None of us

cared about big, noisy parties on New Year's Eve, so we got

together at one of our homes, played bridge, and had a New

Year's toast and midnight breakfast. It was a cherished tradi-

tion. One year, when their son developed an earache while we

were there, Bill and Hans spent most of New Year's Eve running

around Houston looking for an open drugstore to fill a prescrip-

tion for ear drops. But still, we were together.

The tradition was not to be broken completely this year. Hans

and Chickie brought Mrs. Flick—Oma—to visit me. I was very

anxious to have her come, but distressed that she had to see me

like this. I'd also dreaded the moment I would look into her

warm, loving eyes again, knowing that she did not have long to

live.

Now in her seventies, she was teaching herself English by

watching American television programs. She had American

grandchildren and was determined to communicate with them.

Her letters to us, however, were still in Dutch, and Bill and Hans

struggled through her intricate Dutch script to translate them.

But we could always read the signature on her letters: Oma. And

that is what she was to all of us. I had so looked forward to

having her in my home, making it a wonderful visit for her, and

now she had to come here to the hospital.

There was not much she needed to say. She took my hand and

her smile was wonderful. In English she said, "Good to see you,

Sue."

She brought a gift, a sachet. How typical. The Dutch bring

gifts every time they visit anyone, and Oma was very generous—

always bringing goodies for the children and something special

for us.

Bill, Mother, and the girls had dinner with the Flicks earlier in

the week and tried to prepare her for this moment, but that was

impossible. I saw the sadness in her eyes, but I also saw the

120 BED NUMBER TEN

beauty of this woman. Tall and handsome, she had a certain

glow about her that is hard to describe. After she left, several

nurses stopped by my bed to ask, "Sue, who was that lovely

woman?"

Chickie and Hans handled the conversation beautifully, inter-

preting my spelled greetings to Oma. And of course there was

Chickie's kind gift to me—the dampened washcloth to clean off

my face. As always, that was her first gesture when she arrived.

The visit was very special. I'd been worried about how Oma

would handle this, but she was serene and loving. Her presence

gave me a tremendous lift and a real lesson in courage.

The staff was anxious for New Year's Eve to be over. They

dreaded this night because of all the accident cases that would be

brought in. This was the only intensive care unit in the hospital,

so we would get the results of any carnage in the area. I felt

uneasy too—the staff would be too busy to do much for me.

As feared, there was a very bad accident. A mother and child

were brought in. My heart wept for them. I prayed that they

would make it. And I prayed for my own children—that they

would be safe tonight.

The holidays were over now. I was glad. Although 1981 had

begun unceremoniously, without my midnight kiss from Bill, I

was thankful to see the new year arrive. It was a new beginning.

Now we would lick this disease. This would be a very good year.

I just knew it would.

New Year's morning I was upbeat. During the hectic night,

Marie took time to give me one of her terrific backrubs. Because

I couldn't lie on my stomach with the tracheostomy, and I didn't

have the balance to remain unpropped on my side, my backrubs

were a little unorthodox. I had to get them while I lay on my

back. I loved the feeling of Marie's lotioned hands under me,

kneading deeply up into my back. That made any night good.

Today, especially, I was thankful for the start of the new year.

I was sure things would get better. I had to start improving if I

were going to be well in two more months. Today I was certain it

would happen.

Then Bill came in. One look at him and again I felt cheated—

for both of us. We always watched the New Year's Day football

games together, nibbling on snacks and taking down the holiday

decorations. But today none of that would happen. Maybe I was

fooling myself. Perhaps nothing else would start anew today

either.

This was the last day of Bill's vacation, and what a dreadful

one for him. In mid-December, he'd canceled his annual deer

hunt—his one all-male activity of the year. Then his vacation

was spoiled, too. He'd had none of the special good times of the

holidays, just more work at home than ever before in his life.

And all these days spent in this hospital. Dismal.

It was hard for us to think of anything to say. I reminded Bill

that leftover turkey would make great sandwiches for his lunch

back at the office. He nodded sadly and made a note in his book.

Perhaps returning to the stimulus of his job would be good for

him, a relief from the cloud that hung over the holidays. And

there would be just one day, Friday, until the weekend—a good

breaking-in time.

121

122 BED NUMBER TEN

On Saturday, Mother came early and did my nails. The strain of

this first Christmas without Daddy, and with me here in the

hospital, showed all too clearly in her face. Not only was she

worried about me, but I'm sure she missed the things we always

did together. We've been extraordinarily close, I would say, for a

mother and daughter. We are good friends. When I was growing

up, we lived only thirty miles from downtown Houston, and we

made that trip often. Mother and I would drive in, have our hair

done, go to lunch, and perhaps do a little shopping. That was

always a special treat.

When my brother and I were younger and we still lived in

Houston, Mother was always home with us. Then Daddy left

the insurance business and opened an auto dealership in the

little town of Rosenberg. It was a family business, and Mother

managed the office. But Fred and I never felt left alone. She

handled it well. There were times, of course, when I had to go to

the grocery store or fix dinner, and that probably annoyed me a

bit at the time—even then, teenagers preferred to be free of

household responsibilities. Mother also believed I should work

with my brother at weeding the yard, and we had a large piece of

land. In the hot summer, I found every possible excuse to get out

of doing that.

Through the years, Mother had a number of illnesses that

made it necessary for me to take care of her and the household.

Perhaps there were times that it did interfere with what I wanted

to do, but I was the other woman in the family. I realized early

that this was my responsibility, something I needed to do. And

Mother more than made it up to me during our special times

together.

Now I found myself smiling as I remembered the time Mother

had surgery during the summer following my sophomore year in

college. I was in charge of the house while she was in the hospital

recuperating. My good friend Mary Helen, who then lived in

Galveston, came to spend a week with me, and she loved watch-

ing me keep house. With Mary Helen there, the job really wasn't

work, because her companionship made it fun. Mary Helen and

I still laugh about the permanent I gave her during that visit. I

BED NUMBER TEN 123

overdid the curl, and we giggled all the way to the beauty shop to

get it all cut off before she went home. We still remember that

week as great fun.

Now Mother needed some fun in her life. She looked tired and

was quieter than usual. We will all be better with these holidays

behind us, I thought.

After she left, I felt alone. No one came from physical therapy.

Charles and Ginnie were both gone. I knew everyone was busy,

especially with the overload from New Year's Eve, and ICU was

short of staff. But knowing did not help. I needed some move-

ment, and my body ached from not being turned often enough.

This certainly was not shaping into a great new beginning.

ICU had a new head nurse. Mary Jean left word that she wanted

to talk to Bill, so he prepared a long list of all the things he

should speak to her about. He felt good about the meeting, sure

that things would improve.

"She is very interested in you, Sue, and your case. I think she

really understands." He was so confident. "She wants to do

everything possible to make sure you get good care."

Within days it became obvious that nothing was going to

change. Wasn't there anything anyone could do? Bill couldn't

seem to accept my complaints.

"You have to give them time, Sue. Just give them time, and

things will get better." Oh, Bill, how can I make you understand?

I had only my eyes and a few spelled words to tell him what it

was like to be treated roughly, to be seen as less than a person.

Or not to be seen at all. These were intangibles, hard to convey,

impossible for Bill to comprehend.

He did better with specifics. He reported to Dr. Lohmann that

my ears were filling with wax. Sandra came in with the order to

remove the wax. "Well, Sue, time to flush your ears." Hooray!

What a relief it would be to have that done. She took a small

container to the sink for water. Panic gripped me. I knew that,

with the cool weather outside, the tap water from that sink

would be frigid. I tried to signal her to test the water, but she

never looked at my eyes. Into my ears she pumped what felt like

124 BED NUMBER TEN

freezing water. It stabbed my ears mercilessly. The pain brought

tears down my cheeks, but Sandra never noticed.

Carefully she blotted the area around the ears. "There now,

doesn't that feel better?" Her face showed much self-satisfac-

tion, as if for a job well done. I told Bill to get the order for ear

cleaning stopped. I couldn't take the chance that Sandra or

anyone else would hurt me like that again.

I'd heard often about JoAnn. She was an assistant director of

physical therapy, and Charles and Ginnie mentioned her name

when they chatted together while working on me. Then I finally

met her. She was as nice as I expected, a quiet young woman,

kind and gentle. The first time she came in with Charles, she held

my hand, working my fingers a little, but mostly just reassuring

me. She spelled with me immediately.

One day she asked, "Is there anything you need, Sue?"

Ears clean. My hearing was becoming affected. I decided to

take a chance that she'd ask a good nurse to do it.

"Well," she said with a grand smile, "I'll give it a try." And she

did it perfectly with a small cotton swab. I was excited to find

someone who cared enough to help me, even with things that

were not her responsibility. "When you need it done again, just

let me know."

By now I knew all of the procedures and the medications

ordered for me—and when each was due. I diligently kept track

of everything. Since becoming ill, my normal heartbeat had

increased considerably, so Dr. Lohmann had prescribed Inderal

to slow it somewhat. When my dosage was late even by fifteen

minutes, I felt my heart begin pumping faster and my mind

tensing. I admonished myself: This is not good for you, Sue.

Relax. I knew the mind controlled much of the body, but my

mind could not eliminate this racing heartbeat.

To help me remember the names of my medications, I used a

word-association game. But I heard the name of this drug

incorrectly, so I processed an association with what I thought I

heard—"endure all." One morning, Carol was late with the

dosage, and my heart began pounding. I signaled a nurse and

spelled to her, but she couldn't figure out what I was saying.

Finally she got Carol, and again I tried.

BED NUMBER TEN 125

Carol laughed. "Oh, Sue, that's not how you spell it." I got my

Inderal—and tried to think of a new word for my association.

Carol was one of the few nurses who never became annoyed by

my reminders.

The first week in January, Mother learned that an apartment she

had signed up for in the fall was finally available. She needed to

move, but she was overwhelmed with the idea of doing it

without my help.

Bill and I were discussing the problem. There had to be some

solution.

Ask Donna.

Bill considered the idea. "Well, Donna has called several times

wondering what she could do to help. But isn't this too much to

ask?"

She is interior decorator. Can suggest furniture arrangement.

I knew Bill hated asking for favors, but this one did seem

logical to him. "I guess it won't hurt to ask."

It didn't hurt and Donna was happy to help. I also suggested

that Mother call Bess and Sandy. Both were very willing, and

together they set about getting Mother moved.

Donna began taking Mother out to shop for items she needed

in the new apartment. They went often, each time picking out

just one decorator item to tie her things in with their new

environment. Mother carefully described to me a picture ar-

rangement they were working on, and she brought in fabric

samples for re-covering the dining-table chairs. These little

shopping trips, often accompanied by lunch, gave her such a

lift—just what she needed. For a few hours she was distracted

from worrying about me.

By moving day, Bess and Sandy had all the smaller items

packed and moved. I was so thankful that these friends not only

were helping Mother but also filling some of the void that my

illness had created.

One day a nurse stopped to ask if I knew someone named

Marilyn.

Yes. Which?

126 BED NUMBER TEN

"I think she belongs to a club with you. A literature club?"

Yes.

She smiled broadly. "Well, Marilyn just brought in coffee and

cookies for all the nurses."

Marilyn was just an acquaintance—someone I saw at my

literature club and occasionally at Bill's Rice alumni functions.

She never contacted me directly, though I heard an aunt of hers

had had Guillain-Barre. If her purpose was to make the nurses

happy so they'd be nicer to me, it worked, and I was very

grateful.

Vacation was almost over for Katherine, and Elizabeth was

already back in school. I would miss their spontaneous visits.

Katherine was getting ready to return to Nashville and was busy

seeing former high school classmates before they all went their

separate directions. Her first-semester grades came, and she

made the dean's list. I was happy for her.

Elizabeth was effervescent about her ski trip. "I can't wait to

go again!" Apparently the investment in ski clothes was not

wasted. Besides, Katherine was planning a ski trip in the spring

and would be borrowing some of them. That should please Bill.

Elizabeth was in the midst of school activities. Tonight it was

the school board meeting. The Houston Independent School

Board had voted to have a student from each high school sit in

on board meetings—to become informed and involved. Eliz-

abeth had been chosen from Lee High School. Students were

encouraged to submit issues and questions through the board

member from their area.

Since the girls would not be home until late tonight, I asked

Bill for the first time to stay with me for a double shift of visiting

hours. It had been a rough day, and I dreaded being alone all

evening. Bless his heart, he did. He arrived at five-thirty and then

waited to come back in during the eight o'clock visiting period.

It was a lot to ask of him, but he did it without complaint.

From the beginning of my illness, I had recurring dreams that

parts of my body could move. Then I'd wake up to the shatter-

BED NUMBER TEN 127

ing reality. But on January 15, my head actually moved a little

bit! I could consciously move it—not a lot, but it was movement.

I had tested every muscle in my body, over and over, day after

day, so I was startled with this sudden movement of my head. It

was so exciting to have a response from something besides the

muscle in my leg.

When Charles came in to do my range-of-motion therapy, he

watched me show off my new skill.

"Wonderful!" he exclaimed. "Do it again." I obliged. Each

time I did it, my head wobbled from one side to the other, rolling

to a stop. Suddenly he dropped my foot.

"I know what you need!" He had that great big grin, and it

looked like a light bulb had just gone off in his head. "Don't

move. I'll be right back." Off he rushed, returning with a long,

cylindrical pillow. He put it in a case and placed it under my

head. It was wonderful. My head no longer wobbled or rolled to

the side.

"There. Isn't that better?"

Yes! What a hallelujah day!

More frequently now, my lungs were giving the therapists some

indication of beginning to work. Though I could not feel it

happening, it was heartening to know. Bill made note of each

forward step in my recovery. It fit the overall pattern, he told me,

though mine seemed to be proceeding at a much slower pace

than "normal." Bill was becoming very knowledgeable about

Guillain-Barre, thanks to our friend Hans. Seeing Bill's frustra-

tion at not understanding my mysterious illness—and not get-

ting satisfactory answers from anyone who did—Hans arranged

for Bill to do research at the Baylor Medical School library. Bill

spent every spare minute sleuthing out bits of information in

medical books and journals—photocopying everything and giv-

ing copies to the therapists and the nursing staff in the hope that

they were willing to learn. Now, finally, he could explain to me

how Guillain-Barre attacks the sheathing of the neuromuscular

system, destroying the nerve sheath and causing paralysis with-

out necessarily destroying the feeling sensations. I could indeed

128 BED NUMBER TEN

ache, hurt, and know the pain of a poorly directed needle! It was

such a relief to me that others could read the material and

understand my plight. It was a relief, also, to know how my

recovery would progress.

"You're coming back, Sue, just like it says!" Bill exclaimed.

Yes . . . yes.

"Some return quickly, others more slowly. The myelin sheath

grows back at the rate of an inch a month." He paused for that to

sink in. It did. With my height, it would take a long time to grow

back all that tissue. "But you can twitch your leg and move your

head a little, and your lungs are starting to work. You are getting

better."

Getting better.

Bill clasped my hands firmly, and mentally I was also clutch-

ing his—we were like athletes, determined to win together. I

might take longer to bounce back, but I would beat this disease

and be back to a full life. I never doubted that I would make it—

after all, Bill told me I would get well, but now I had written and

physical proof, and I felt a new energy to fight.

The glow of such moments was transient. For all the moments

that lifted our spirits, there were also the bad times, and my need

to share them.

Louise hurts. Dumb.

I disliked burdening him with complaints, but I had to tell

someone how frustrated and frightened I was. I got no sleep

when Louise was my nurse. I was terrified of what she might do.

Marie took two hours to undo Sandra's mess.

My sentences became longer, perhaps in proportion to my

frustration with the continuing foulups. Bill was also getting

much faster at spelling with me. Words that I used more often

became standards—even names were now familiar. Each word

was preceded by the number of letters, which helped Bill.

Six blinks, then S ... a . . .

"Sandra," he would say and simultaneously write in his book.

"What did she do now?" He immediately recognized seven

blinks and Lo ... as Louise, or Au ... as Aurilla. He knew that

Fol. . . referred to a problem with my catheter.

BED NUMBER TEN 129

Unfortunately, bad news often outweighed the good. And

longer sentences meant more of it.

It remained agonizingly hard for me to deal with the limita-

tions of our spelling system. Always just the barest facts. Never

any remember-whens or small talk. I couldn't even tell Bill about

the dream I had just before his morning visit. It was so real, the

colors and smells so vivid. I wanted to tell him that I'd just

dreamed we were back on the France, the ship on which we

sailed home from Holland. In my dream the salt air was delecta-

ble and the music never stopped.

At the end of our Dutch exchange year, Tom and Sylvia

invited us to sail back from Europe with them. Tom had been on

sabbatical from his position at Rice University, and we'd met up

with them twice on side trips—Switzerland for Christmas and

London for Easter. When Sylvia first suggested sailing home, Bill

laughed. All that time on a ship seemed silly to him, since his

work demands a good deal of time on company boats, checking

seismic equipment.

But Bill's co-workers in The Hague assured him that sailing

was a wonderful way to return home. There's no jet lag, and it's

so relaxing to have 4Vz days when phones don't ring. We were

convinced.

As we walked up the gangplank to board the France, my heart

raced, and I couldn't believe it was real! Being on board with our

friends made it all the more special. Their three children were

fourteen, eight, and seven; ours were eleven and nine. They'd

been together often enough by then to enjoy sharing the ac-

tivities of the ship. We felt quite safe letting them wander the

ship together, allowing the four adults time together, and giving

Bill and me some very special time alone, just the two of us.

After dinner, we four often would wander into a little club

where people gathered to avoid the big, formal ship parties. In

my dream we were there, and Bill had promised me one last

dance, but the musicians never stopped playing. On and on we

danced, first in the club and then out onto the deck beneath the

stars. The smell of the sea was intoxicating, and we kept on

dancing. The children stood watching us, clapping as the music

went faster and faster. And still we danced. Bill was saying, "I

130 BED NUMBER TEN

love you." Over and over he said it, all the while dancing faster

and faster. I tried to answer. I tried to say, "I love you, too." But

we were dancing too fast. I had no breath.

"I love you, Sue."

I was trying so hard, but I couldn't say anything. Even when I

opened my eyes and saw Bill bending over me, I couldn't say the

words. There was no breath. Oh, Bill, I want to tell you once

more how much I love you. The single tear that dropped from

his eye to my cheek, and the tenderness of his voice, told me he

knew.

Katherine was leaving for Nashville on January 11. When she

visited me earlier, I sensed her anxiety about going through

"rush" to join a sorority. I wanted to talk to her once more

before she left, to give her a little moral support. Bill promised to

bring her to the hospital on their way to the airport. He warned

me that they would be in a hurry, but he would time it so I'd have

a half hour to spell my best motherly pep talk to her.

Marie, bless her heart, was my nurse that morning. She was

such a good nurse, and on this day she had time to give me a

thorough bath. She wanted it to be a special treat. However, she

fell behind schedule, and the doors to ICU were closed to all

visitors until my bath was finished. As she worked, I watched the

clock. We were running late for Katherine and Bill. I tried to

spell to Marie to finish up and let them in, but she kept right on

talking and primping me. There was nothing I could do. She

used up the entire half hour I so desperately wanted with Ka-

therine.

When the door opened for visitors, Katherine and Bill rushed

in and kissed me. "No time to talk," Bill said. "We have a plane

to catch." With only a few words and another kiss, they were

gone.

It wasn't Marie's fault. Without speech, I had no way to

communicate with her. She was determined to give me a little of

the special attention she knew I wanted and needed. But now

Katherine was gone, and I had no time even to remind her that I

loved her.

BED NUMBER TEN 131

Two weeks later, rush week was well underway, and I waited for

news from Katherine. My week was not going well—my tem-

perature was up again—and I grew concerned for Katherine,

too. I was beginning to suspect that no news from her was bad

news. Finally, when my temperature returned to normal, Bill

gave me the word: Katherine did not pledge. I knew how

disappointed she must be, and I hurt for her. If only I could have

talked to her before she left. She still would have had to bear the

disappointment of not getting something she wanted, but

maybe I could have made it a little easier for her to face. And

now.... I wanted to talk to her, to write to her, to tell her how

much I loved her and how little this mattered. And how proud

we were of her. Oh, why this illness? I cried for two days. Dear

God, please take care of her, of all my family. I wanted to ask

Him to take care of me, too, but that was harder. The people at

church would take care of that for me.

Tears in ears, I spelled.

Bill studied me after realizing that this was all of the message.

His shoulders slumped when he understood. I'd been crying,

and the tears were accumulated in pools in my ears. Tenderly he

twirled cotton swabs to soak them up. I didn't need to tell him

why I had been crying. He wiped away more than tears.

Days were interminable, and evenings were even worse. After

Bill left at six, time was empty, but I didn't want him to stay at

the hospital any later. Darkness comes early in January, and I

didn't want Elizabeth to go home to an empty house. That was

unthinkable to me. In ICU, the pace of evening visitors slowed in

January. Dark hospital parking lots are a deterrent. Most of

those who still came faithfully obeyed the posted fifteen-minute

visiting notice. Only Bill, Mother, and a few close friends

stretched their time. With increasing therapy, the lengthy feed-

ings, and Bill's and Mother's visits, the days were a little less

lonely—even if the increased activity was frustratingly tiresome.

But the evenings alone were terrible. Television would have

132 BED NUMBER TEN

helped, but it interfered with the hospital equipment in ICU and

was not allowed.

I was astonished the day Bill brought in a tiny, battery-

operated TV set. Dr. Lohmann finally told him that yes, this was

a serious case, and I would be here for a while. So Bill persuaded

the staff to allow this little five-inch set. I was so excited. I

thought I might even shout. After removing it from the box and

inserting the batteries, he adjusted the tuning and focusing—

and finally we had a picture. It was wonderful!

After some experimentation, Bill positioned the set on the

crank-up table, which he rolled to the foot of the bed. I was very

excited, but I also realized I would have another responsibility—

keeping track of my television set. That table was used beside

the bed during the day for small equipment and for my bath

water. I must make sure that no one knocks my television off the

table or spills water on it. No sooner had I thought about that

than Bill repeated my thoughts. Had we lived together that

long?

Yes. Will watch.

We tried to remember which of my favorite programs were on

this evening. Whatever channel I selected had to remain on the

whole evening. By the end of his visiting time, Bill had it set for

me. Now there was something to look at besides that yellow

wall and the clock. Dear, thoughtful Bill. How I want to throw

my arms around you and whisper thank you. I hoped he knew

my tears were from happiness and gratitude. His smile said he

did. He turned quickly and left, reaching for his handkerchief

from a hip pocket.

Now Bill had to remember disposable batteries for the tele-

vision every other day, rechargeable batteries for the radio every

day, and the weekly issue of TV Guide to help me select my

station for the night.

As my lungs increased their ability to assist the respirator a little,

the therapists began changing the setting of the machine for

brief periods—to make the lungs work harder. The new setting,

which they referred to as IMV, was very frightening, especially

when it was done by someone who was not good with me, or if I

BED NUMBER TEN 133

was left alone. On the new setting, the machine seemed to pause,

trying to force me to breathe. But I could not control my lungs to

make them inhale. If I didn't breathe sufficiently for a certain

number of seconds—which seemed like an eternity—the ma-

chine would supply me with another few breaths and then pause

again. It was exhausting to struggle with the irregular pattern of

breathing, and coping with the fear left me completely drained.

James's bright face was always a welcome sight when he came

to work with me. At least when he was there and I had to face

these dreadful episodes with the respirator, there was a reassur-

ing hand holding mine—and someone who thought to reward

me occasionally by returning the respirator to the normal setting

for a few minutes so I could rest.

One evening I learned another of his talents. My nurse turned

me and tried to position me, without success. James walked by

and she called to him. "I can't get Sue settled right. Will you help

me?"

Without a moment's hesitation, he took over. He knew ex-

actly how to place the pillows. With little effort, he had me

positioned perfectly. When he returned later to suction me, I

learned he was also a nurse. Later the nurse tried again to

position me and gave up, leaving me in a heap. An hour later,

James checked the respirator and saw the mess I was in. Again,

with ease, he settled me, relaxed and comfortable, for sleep.

After that, whenever I had an evening nurse who was unable

to turn me comfortably, I'd tell Bill, Ask James fix me. And

James would watch me the rest of the evening, repositioning me

whenever I needed it. I wished that I could speak to him, but

perhaps there was nothing to say. Certainly no mere words

could tell him what his caring meant to me. I could relax when

he finally finished, smiled, patted me on the leg, and said,

"There! See you tomorrow, Sue."

Vickie was bubbling these days when she was my nurse. I sensed

something special was happening. "Sue, I have to tell someone.

I'm going to tell you, but not anyone else. They'll spread it all

over the hospital, and I don't want everyone to know yet." She

looked around for eavesdroppers. "Sue, I'm pregnant."

134 BED NUMBER TEN

So happy.

With frequent looks over her shoulder, she told me about

going to the doctor and breaking the news to her husband.

As soon as Bill came, I signaled him that I had a message. He

reached for his book and wrote down the letters.

Vickie pregnant. Secret.

Bill Baier couldn't let that slip by unnoticed. When Vickie

came in to turn me at noon, he said very quietly, "I understand

we have some news, Vickie." She looked at his grin for a

moment, smiling herself, and then turned to me, hands on hips.

"I told you not to tell anybody. A fine thing. I can't even trust

you, Sue."

Secret. Promise.

And I kept my promise. I was so happy for her. She would be a

wonderful mother.

My daily routine had its bright moments when staff shared

their lives with me. Carol's stories of her cats were now usual

whenever she had me. She knew how much I missed our Tiffany,

and I loved her feline tales. Charles was going to try a new diet—

after next weekend's big dinner party.

Others talked about their home lives and families. Luana was

a petite, young Indonesian woman who was married to a Texan.

Now they had a baby, and this, she announced, made them all

true Texans. Luana only worked two days a week, but it was

always two shifts together. I could never understand how she

handled those long days. But whenever she had me, I looked

forward to her talk of her husband and baby—and to fine

nursing care.

Joan, also an Indonesian, was almost late for work the day it

snowed in the northern suburbs of Houston. Everyone teased

her because she had taken her little girl to see snow. But I

understood perfectly. When Katherine was six months old, we

took her to New Jersey for the holidays. To my delight, it

snowed on Christmas! Fortunately, Katherine was prepared for

the cold weather, thanks to Nana's insistence that I order a

bunting for her. Such apparel was not common in Houston. I

bundled Katherine in her new pink bunting and took her out in

the blizzard to see her first snow. Bill dutifully recorded this big

BED NUMBER TEN 135

event with our camera. But I was the only one who seemed

thrilled. Katherine didn't understand snow, and part of the

family couldn't come for dinner because of bad roads. I felt bad

about that, but still I loved this White Christmas. Later in the

day, Bill and I went for a long walk. It was beautiful, and it's

now a cherished memory. I completely understood Joan's taking

her little girl to see snow. I wished I could have gone with her.

At home, Bill was busy sending thank-you notes for all the help,

the food, and the gifts. And little by little, he was removing and

putting away the Christmas decorations. Katherine was gone,

and Elizabeth was busy with school, so her help was sporadic.

Poor Bill. There was no end to his lists of chores.

People from church continued to bring prepared dinners

every few days. They were organized with a schedule now. In

between, there were meals delivered and dinner invitations from

friends—and plenty of leftovers. Still, Bill had his job, three trips

a day to the hospital, all the household and financial respon-

sibilities—even his own lunch to pack every day. He looked so

tired that it began to concern me. Yet I continued to add to his

burden with my problems about forgotten procedures, my com-

plaints about the staff, and my messages to the doctors. I had no

one else to act as my voice. Please forgive me, Bill, for being such

a burden.

One day a man in a jogging suit appeared in ICU. His attire was

a wonderful contrast to the staff uniforms and the no-nonsense

appearance of the visitors. The nurses were obviously pleased to

see him and immediately escorted him over to my bed. He

exuded the smell of fresh air. It turned out that he was a former

ICU patient who hovered near death for some weeks as the

result of an automobile accident.

"Now," Marie instructed him, "you tell Sue that we got you

up and out of here, and we're going to do the same for her." He

was so jovial and reassuring that he truly lifted my spirits.

Some patients, however, did not make it in ICU.

It was never a secret what was happening. A patient's monitor

136 BED NUMBER TEN

triggered the alarm, and all the staff went running. "Code blue"

echoed through the unit. A nurse rushed by, pushing the crash

cart loaded with lifesaving equipment.

Sometimes their mission was successful, but when it wasn't,

I'd hear the long, flat tone that meant they'd lost the battle.

Slowly, everyone would disperse—their expressions showing

the sadness of loss. I, too, was sad. I wanted all of us patients to

walk out that door to a full life after these dreadful days.

After a patient died, the body had to be removed. When the

men came for the removal, a nurse rushed around the unit and

pulled the curtains across all the cubicles. It was a routine

gesture, an effort to spare the other patients. But because I had

no reliable call button, the terror of having that curtain close me

off from everyone was sheer torture. My heart would race,

regardless of when I'd had my last medication. Terrifying isola-

tion would swirl around me, and I was sure I was being swal-

lowed. Minutes were interminable. Eternity was now.

Although this situation occurred an average of once a week, I

never conquered the fear. I knew no relief from it until the day

James was standing just beyond the foot of the bed as the curtain

was drawn. Apparently he caught a glimpse of my desperate

look of anxiety, and in he came to inspect the machinery he'd

just checked a half hour earlier. He stayed until the curtain was

opened again. Dear James, thank you.

From then on, whenever he was available to stay with me, I

never had to face that horror alone. Immediately James would

appear, usually carrying a stack of charts. He'd sit on a stool

near the edge of my cubicle, scribbling and shuffling. Sometimes

he'd smile and thank me for allowing him to use my stool for his

charting. But he was there, soothing me with his presence.

Flu was rampant in the hospital. Staff members were out, and I

heard nurses talking about the large number of patients ad-

mitted with this bad virus. If there was one thing I did not need

now, it was the flu! Kay obviously was coming down with it, but

she was so conscientious she stayed on. I prayed I would not

catch her virus.

BED NUMBER TEN 137

A few nights earlier, Kay had noticed that the respirator

showed signs of leaking. Finally, it had to be replaced. She went

for a new one, but it had to be serviced before startup. To keep

me breathing, Sandra pumped air into my lungs with the Ambu-

bag, rather like a bellows. For two hours she stood next to me,

bagging me by hand with a regular pattern of breathing. We

could both watch Kay, working as fast as she could on the new

respirator while fighting flu symptoms. All the while, Sandra

and Kay talked to me and spelled. Sandra must have been

getting terribly tired, but she never missed a beat. And all

through it, she kept reassuring me. I was completely relaxed

with her. It amazed me that she could be so dreadful at times,

and could show such patient endurance at other times. I was

enormously grateful to Sandra and Kay for what they were

doing, but especially for two hours of uninterrupted compan-

ionship.

Kay was out sick the next few nights, but I never got the flu.

January 18: the day before Bill's birthday. There was nothing I

could do to make the day special for my husband. I was afraid he

might forget—or, worse, that Elizabeth might.

Tell Elizabeth your birthday tomorrow.

He grinned. "Don't worry, Sue. She remembered. There have

been broad hints."

The next morning, before I could spell Happy Birthday, he

said, "The kitchen is such a mess. You wouldn't believe!" I

didn't believe—or understand.

"Elizabeth made strawberry crepes this morning." Oh, thank

you, Elizabeth! Bill loves strawberry crepes—the kind filled with

cream cheese and topped with sour cream and strawberries.

Whenever we go to a pancake restaurant, that's what he orders.

And to think I was afraid Elizabeth would forget what day it

was! She had to leave for school by seven, but she'd gotten up

and done that for her father's breakfast. No wonder she didn't

have time to clean up the kitchen! I was touched that she'd made

such an effort, all on her own.

He was still shaking his head, practical old Bill. "You should

138 BED NUMBER TEN

just see the kitchen." Inside I grinned from ear to ear, but all Bill

could see were the happy tears that squeezed from my eyes as I

spelled. Happy birthday. Next year, dear Bill, I'll make sure you

have a really happy birthday. There will be crepes for breakfast,

your favorite sauerbraten for dinner, and a gathering of the

whole family. And laughter and teasing and fun—and a clean

kitchen!

Bess removed a letter from her purse and unfolded it. "Lissy

wanted me to read this to you," she said. Lissy was her daughter,

between Katherine and Elizabeth in age, and our two families

had been close since the girls were in junior high school.

Dear Mrs. Baier,

I just thought you might like a little report on the goings-on

around Lee. . . .

How dear of her. Of course, I always wanted to know every-

thing about Lee High School. She gave Elizabeth rave reviews on

her participation at school and told about a very special conver-

sation she'd had with Katherine. She even teased me that I now

had the "Mo Ranch Revenge"—a reference to the previous

summer, when Lissy spent a weekend with us at our church's

family camp, Mo Ranch. Unfortunately, a terrible stomach

virus hit and felled most of the hundred-plus campers one by

one. I didn't want any of us to get sick, but I was especially

concerned about my responsibility for Lissy. All the teenage girls

slept in one large dorm, away from the parents. I told Elizabeth

and Katherine that I wanted to know right away if they or Lissy

got sick. In the middle of the night, one of the campers marched

across the campground in the dark to get me. "Mrs. Baier, you

wanted to know if Lissy got sick. Well, she is." By the time I got

to the dorm, Elizabeth and Katherine also were sick. It was a

long, busy night with all three girls. I was one of the few people

there who wasn't attacked by the virus. But I did get such a virus

a few days before Thanksgiving—and that may have triggered

this awful disease.

BED NUMBER TEN 139

... I always knew that you couldn't escape the Mo Ranch

Revenge forever.

I love you,

Lissy

It was a sweet letter, and I was touched that she'd thought to

write me. When Bess finished reading, she refolded the letter, put

it back in her purse, told me a few bits of news, and was gone. I

tried to signal her—I wanted that letter. It was a treasure.

First thing next morning, I spelled the assignment to Bill, who

retrieved the letter for me.

"January 20: Clean. Put out tree."

—from Bill's diary

When the Iranians first took over the American Embassy in

Teheran, I felt concern for the hostages and their families. The

news was always headlined in Houston, because the mother of

one of the captives lived here. But in ICU, I felt a special kinship

for the hostages. I, too, felt like a prisoner—a captive of a

disease, lingering at the mercy of so many strangers who now

controlled my life.

As efforts to negotiate the hostages' freedom escalated, I

became increasingly depressed. I couldn't understand why. I

wanted them to be free, but who was negotiating for my free-

dom? When the release appeared imminent, I watched televised

reports with a passion. Yellow ribbons were hung from trees all

over the country to prepare for the welcome home. Yet, I was

filled with apprehension. Would they really be set free or would

something happen at the last minute to undo all the planning, to

shatter all the hopes? I wanted them to make it.

When it happened, when I saw them on my TV set, coming off

the plane in Germany, I was overcome with envy. I watched

scenes of the homecoming of the Houston man, his mother's

tears of joy, and all the yellow ribbons hung throughout the city.

I was jealous. I, too, wanted to be free. But I was still the hostage.

140 BED NUMBER TEN

Each evening when Bill read the TV listings to me, I wanted to

hear everything, even the schedule for the old-movie channels.

One night I chose Bedtime for Bonzo. What fun it would be to

see our newly inaugurated president back in his early acting

days. After a miserable day, a comedy would be welcome relief. I

was having a pleasant time all by myself—until fifteen minutes

before the end of the movie. A nurse came by and shut it off.

"Sleep time," she proclaimed. She had never even looked at me.

This was such a little thing to be upset about, I told myself, but it

was one more of the many thoughtless acts heaped upon me

every day. I had absolutely no control over any aspect of my life.

I kept remembering Daddy and his days in the nursing home.

Had he known that his life was out of his control? I remembered

the faces of other elderly men and women at that home—one of

the good homes. Many of them still had a spark of awareness in

their eyes. Did anyone ever look into those eyes and try to see

what was behind them?

I looked around the unit at the others, who seemed to be

asleep. Were they? Had they also been informed summarily that

it was "sleep time," so they gave up and went to sleep, or

perhaps pretended? This was only one small hospital. How

many more of us were there in other hospitals who wanted to

shout that we were not yet ready for sleep?

I wished I could be a little more sure that Daddy didn't know

what was happening in the world that surrounded him at the

nursing home.

A new player entered my game. I heard the nurses call him Dr.

Birmingham, and James said he was an anesthesiologist. I

couldn't imagine why an anesthesiologist was involved in my

case. But he seemed to live in ICU and gradually began stopping

by my bed, looking at my chart, and asking the nurses questions

about me.

He was a large, imposing man, partially bald, with a fierce

temper that was often the topic of conversation in the unit. He

always had a nurse with him as he made his way around the

BED NUMBER TEN 141

ICU, but those who didn't have to be with him scooted out of

sight whenever he approached, because so often he castigated

anyone at hand. I tried to understand how he was connected to

my case, especially when he began giving orders to the staff

concerning my care. Dr. Lohmann had never mentioned him as

a consultant. No one ever explained how he got authority over

my care—specifically, over the setting of my respirator. But even

Bill was recognizing him as one of my doctors.

"Dr. Birmingham says you're afraid of the machine," Bill

reported.

Tell him not afraid of machine, but of help who don't know

how to work it. Dr. Birmingham wasn't there when a nurse tried

to "adjust" my life support and fouled it up.

Dr. Birmingham came to my bed several days later. He said

nothing about my message, but he ordered James to turn the

respirator to a higher IMV setting, with longer gaps to force my

lungs to work even harder. It was terribly uncomfortable and

frightening. He was trying to make my lungs do more than they

were capable of doing.

My eyes pleaded with James, and he looked at Dr. Bir-

mingham, who didn't seem to notice my fears. "She should be

ready for this. Keep it going." Terror was mounting.

Within minutes, he realized I wasn't ready. "She's not taking

enough; set it back," he said, seeming annoyed. My heart raced.

"She should be ready by now, but I guess we'll have to ease her

off more slowly." From now on, he ordered, the setting would be

adjusted gradually every three or four days.

Nothing seemed to be progressing fast enough, or on any

predictable schedule. At times I felt as if some people thought I

wasn't trying hard enough. It wasn't my fault, honestly. I was

trying. Oh, I was trying.

"January 25: Birmingham cries. Says Sue may never breathe on

her own again."

—from Bill's diary

142 BED NUMBER TEN

Something was wrong, I didn't know what, but I was scared. I

was having trouble breathing. I was not getting enough air.

Often I'd been anxious when the respirator's IMV setting was

increased, but I was familiar with that sensation. Something

different was happening to me—and, of all nights, it was when

Aurilla was my nurse and Bruce was in charge of the shift.

Perspiration poured off me. Frantically, I waited for Bill to

come; he had to find out what was wrong.

Bill took one look at me and knew we had a problem. He

turned quickly toward the station. "Who's Sue's nurse?" Aurilla

strolled over to the cubicle.

"Something is wrong with her. Is the respirator working

properly?"

Aurilla was unimpressed. "I'm sure it's fine. She just gets upset

when it's on IMV."

"It's more than that this time."

Without responding, Aurilla took my pulse and then my

blood pressure.

"She's just fine. Everything is normal," she reported.

"How normal?"

"Her pulse is sixty-two. That's normal."

"Not for Sue it isn't normal!" After all this time, Aurilla and

many of the other nurses still did not seem to remember that my

heartbeat always was much faster on the respirator. That is why

they gave me the Inderal. "Sue's normal is 112! Something is

wrong. Turn the machine back to the regular setting," Bill was

ordering. "Get it off the IMV until we find out what's wrong."

Aurilla said, "You'll have to talk to Bruce about that. He's the

charge nurse tonight."

Bruce never got up from his desk, never came over to check

my pulse or the respirator. He just sat there and announced that

he couldn't change the setting. "I have Dr. Birmingham's orders

not to move the dial."

"But there's something wrong. You have to change it." Bill

was being polite but forceful.

"Without a doctor's order, I can't touch it."

Bill's frustration was soaring, as was my panic. Suddenly he

BED NUMBER TEN 143

spotted Dr. Muenkel walking into ICU. With noticeable relief,

Bill called to him. Dr. Muenkel ordered the setting changed

immediately. "Now, let's get her suctioned," he said. And to

everyone's amazement, out came a huge mucus plug. What a

relief! Now I could breathe comfortably again, and my heart-

beat went back to normal, my normal.

As Bill was leaving for the night, he saw Dr. Birmingham at

the nursing station. Obviously Bruce had told him what had

happened. When Bill approached them, Dr. Birmingham put his

arm around Bruce's shoulder and, with a very nice smile, said,

"Bruce is one of our finest people, you know." Bill asked the

doctor about his orders, and again he smiled. "Well, of course, if

things had really gotten bad, Bruce would have changed the

setting."

Next morning, when Bill told me about the conversation, I

was incredulous. Those two were delicately shifting the blame

so nobody would be found guilty of a mistake! That morning

Mary Jean talked with all the ICU staff, instructing them about

the suctioning and telling them that this should never have been

allowed to happen. Finally!

I had become frightened whenever I saw Dr. Birmingham in

ICU, and I had good reason for fear two days later when he

announced that he needed to change the tracheostomy appara-

tus. This meant that I would be off the respirator while he made

the change. By now, the outer facing of the trach tube adhered to

my skin. The pain was excruciating as Dr. Birmingham tore the

tube away from my neck. Was he completely devoid of feelings,

of awareness that I could feel? It seemed an eternity that I was

off the respirator. The sound of my heart pounding with fear

echoed in my head. My terror was deafening. I tried to watch

what he was doing, but he was so near and overpowering that I

closed my eyes to remove him. That was my only defense.

It was becoming quite obvious that I would not be well in the

promised three months.

My first time off the respirator was a red-letter day, although I

wasn't entirely aware of what was happening until it was over.

144 BED NUMBER TEN

Harriet and Kay came to my bedside, looking very conspir-

atorial.

"This is it, Sue Baier," Kay said. "Today you are going to try

something new and exciting! We're going to try you on pure

oxygen."

Before I could spell my questions, Kay read them in my eyes.

"You're not to worry. We're just going to try this for two

minutes, and Harriet and I will be right here with you. If you feel

any discomfort . . ." Already I was uncomfortable about this

unknown. Nervous perspiration was beading up all over my

face. ". . . you just blink twice. We'll switch you right back."

Yes. Only my faith in Kay and Harriet, who had become my

friends, made me tell them it was all right. Kay hooked a plastic

tube to the oxygen outlet on the wall.

"All right, Sue," Kay said. "Are you ready?"

Yes. We could try. Here we go. She switched the tubes at my

trach. My eyes were fixed on Kay.

I couldn't feel anything happening. "You're doing fine, Sue.

Keep on. Think breathing." I tried to imagine myself taking a

breath, but I felt nothing. Still, Kay was cheering me on with

such enthusiasm.

"Look," Harriet said, "she's taking some." A minute and a

half.

"Keep on, Sue. You're breathing. Just try twenty seconds

more." I'll try, Kay. I don't feel like I'm breathing, but I'll keep

trying.

"You made it!" They both cheered as Kay changed the con-

nection. "You made it."

"Two minutes," Kay said, "is a start, Sue. And you did it!"

Their excitement was infectious. I had made a major step

forward! Finally!

That evening, when Bill visited me, there were no complaints.

Before he left, I spelled one word: hug.

There were tears in Bill's eyes as he reached carefully around

all the tubes and sensors and held me in his embrace. For a brief

moment our closeness allowed us to escape the horrors of this

place.

"Look at your December bill." Bill was holding up a bale of

computer paper, a stack at least IV2 inches thick. "I just wanted

to show it to you," he said, waving it in the air aimlessly. He was

struggling with his bewilderment.

I was shocked. He read random items aloud, but this was all

too much for my mind to comprehend. Yet I should have

guessed. Every time the staff used anything on me, they took the

sticker off the item and posted it on the wall chart, which was

removed at the end of each shift. I knew hospital bills included

charges for patient kits—the toothbrush, water pitcher, and

tissues—plus the per-day charges. And if they used a special

piece of equipment, such as a heating pad, they charged extra for

that. But here it was. Every single swab, every single anything

was listed line by line! I couldn't believe they were charging per

piece. Whenever I was suctioned, the therapists used a little

plastic box into which they poured distilled water to dip the tube

for suctioning. For every time this was done, there was a charge

for that little box and the distilled water—not to mention the

charge for the therapist's visit.

Strangely, of all the charges posted, it was the lemon swabs

that bothered us most. Bill held one up and said, "Do you know

how much this one swab costs? Sixty cents." That was incredi-

ble! Imagine this little item costing sixty cents when I could go

out to a store and buy a whole box of them for $1.29. It was

good Bill was still bringing in my tissues. Our large boxes were

less expensive than the hospital's tiny ones.

This was just the first month's bill. Bill assured me that we had

good insurance, so I needn't worry, yet both of us were dis-

turbed. Every time I saw a sticker plastered up on the wall chart,

I thought about the next month's bill.

145

146 BED NUMBER TEN

I was lying on my side facing the machine. Aurilla had just

turned and suctioned me. My eyes focused on the alarm switch.

It was off! That can't be. My alarm can't be turned off! What if

something happens? From the corner of my eye, I looked out

into the unit. No one. Please, someone, my alarm is off. Four

o'clock. Bill won't come for two hours. James, where are you?

When I was suctioned, the respirator setting had to be changed.

To keep the alarm from sounding during the procedure, Aurilla

turned it off until the machine was reset. But she had forgotten

to switch the alarm back on.

My heart was racing. Fear churned my stomach. If something

goes wrong, no one will know. The bell won't go off to warn the

staff. Is the machine working now? Is it set right?

I never could feel my breathing—not since I was put on the

respirator. I tried to look down to see if my lungs were expand-

ing, but I was on my side, and my gown was puffed away from

my body. But I had to be breathing. Otherwise Bill said I would

pass out.

I stared at the respirator. It sounded right, the same as it

always did, but was it? And what if it stopped? What could I do ?

I had no way to call for help. Fear screamed in waves of nausea.

Perspiration turned clammy.

The first time I caught movement in my peripheral vision, I

tipped the sleighbells. The nurse did not notice. Now I had no

call button. My eyes flashed a signal to anyone who passed my

cubicle, but no one saw. For over an hour I lay waiting in dread.

Finally James came in.

Alarm!

As he flipped the switch to the on position, tears poured

from my eyes. I didn't dare cry before now. I had to see and

be ready to signal. James gently wiped away the tears and

perspiration. "It's all right now, Sue," he said. "I'll try to watch

more closely after this." The intensity of his voice told me I

could believe him. But what was I to do when James wasn't

on duty?

Above the sibilance of the respirator I heard the staccato of

James's voice at the nursing station. Perhaps he could do some-

thing. Please listen to him, please listen and remember.

BED NUMBER TEN 147

Most of the good nurses were part-timers. Sometimes Bonnie

came only one day a week. Luana came twice a week. Carol

usually worked four days one week and then only a weekend the

next. Scheduling seemed haphazard. They all seemed to come

and go without any continuity or certainty. Even those who

were good had to relearn what was happening with me after

several days off. At times several good nurses worked the same

shift, and I would get one of them. But then days passed without

my having a nurse who cared enough, or had time, to communi-

cate with me.

And, of course, there were full-time nurses—Bruce, Aurilla,

Phil. Always there. Especially Aurilla.

As Charles gave me range of motion one afternoon, I shot a

look in the direction of Aurilla.

"Ah, you have her again." His sigh spoke volumes of under-

standing. "I'm sorry, Sue. I tried. I told them how you feel about

her. There's nothing more I can do."

Even James tried to persuade Mary Jean, the head nurse, to

keep Aurilla away from me. It didn't work. "But don't worry.

I'll watch you evenings when she's on." Thank you, James, for

being my security blanket.

One Sunday morning I was startled to see Aurilla making

rounds. She never worked days. I felt a dull thud in my stomach,

knowing I'd surely have her again.

Things had been chaotic in the unit all night, with several

"codes" and two other critical patients. Before Bill arrived, Phil,

who was in charge this shift, came over to my bed. "Sue, I'm

going to apologize now for giving Aurilla to you," he said, "but

we can't risk giving her to somebody who's really sick."

It was incredible. I'd known all along how bad she was, but

nobody—not even Bill—seemed to believe me. And now Phil

was finally admitting it. I wanted to plead, Why is she here? If

only Bill were here to listen to the truth.

Patiently Bill wrote the words in his diary and nodded his

head, as he did routinely. But did he comprehend? Did he

believe? Surely he didn't think I was imagining this conversation

with Phil. "But what can we do, Sue? Dr. Lohmann says you're

getting good care. We don't want to make trouble."

148 BED NUMBER TEN

My brother came in from Dallas to help with Mother's move.

Fred would supervise the movers, hang pictures and mirrors,

and take care of other matters. He and Mother came to the

hospital the night before moving day. It had been a long time

since our last visit, so I was delighted to see him. He'd called Bill

several times to inquire about me, but I'd felt a twinge of sadness

that he hadn't come to visit me before. Now I could see how

much the sight of my condition was affecting him. Perhaps he

had known what he was afraid to face. Tears poured down his

cheeks. I had never before seen my brother cry. He was always

the strong brother, even though he is three years younger. Now

we were both older—so much older tonight. He was barely able

to speak to me, but he promised to come back after the move

was completed. By then, I was sure, he'd be more comfortable

with how I looked and would be able to talk with me as we used

to do. Funny how just seeing him brought back so many memo-

ries of our childhood years.

Fred and I played well together as youngsters. Only once do I

remember a real blowup between us. Fred was a tease, as

brothers can be. I don't remember what he was doing that time,

but he infuriated me, so I picked up the red fire truck he had

gotten for Christmas and threw it down and broke it. Even now,

years later, he loves to tell that tale on me, and it still embar-

rasses me. I just didn't do things like that!

After Fred and Mother left the hospital, they stopped at a

cafeteria to have dinner, and during the night they both became

extremely ill from food poisoning. But they had to continue with

the move the next morning. Mother said poor Fred did well to

keep going, but he was too exhausted to come back to see me.

Besides, he had the long trip home ahead of him. I was very

disappointed that I couldn't see my brother before he left. I

would gladly have endured the fire-truck story again!

In spite of being exhausted herself, Mother visited me and

chatted pleasantly about what Fred had said and about all the

help my friends had given her. I tried not to let my eyes show

how sad and useless I felt. I was the one who should have been

there helping her, being part of this important move of hers. I

BED NUMBER TEN 149

hadn't even seen her new apartment. When will I get to see it?

Will I ever be out of this place?

Because of the move, Mother had fallen behind in keeping my

nails trimmed. When Gerda and Wim made their weekly stop,

Gerda noticed that my nails were getting too long. "Oh, Sue,"

she said, "next time I come I'll bring my manicure set and do

them for you." The offer was kind, but I had to stop her. It would

upset Mother to have someone else take over the one thing she

treasured doing for me. This had become her special gift of love.

Bill would have to straighten this out.

Tell Gerda Mother does nails. Bill studied the words he wrote

in his book, then looked at my nails, even more puzzled. Tell

Mother come do nails before Gerda comes back. Now he under-

stood. He smiled and shook his head benignly. Much ado, I

could imagine him thinking. But he would take care of it.

The next day Mother came with her equipment. "I'm sorry I

let them get so long, Sue. I hadn't realized how fast your nails

grow."

The feelings inside were warm and sincere as she manipulated

each finger and toe, clipping and filing. "Well, look at that, the

calluses are getting thinner, just as I promised. They'll all be

gone by the time you start. . ." Her voice cracked. I could hear

the tears, though she never looked up. ". . . when you start

walking again." She wrapped her tools in a tissue and put them

in her purse, still struggling for composure. Yes, Mother, I will

walk again. I know I will. And it will be wonderful not to have

those troublesome calluses. Our tears commingled as she kissed

me and left, unable to say good-bye.

I worried about Mother now. She'd had troubles before and

always handled them beautifully, without complaint. She

fought back, and everyone admired her ability to cope. But now

she was shut off from real communication with me and felt

closed off from Bill as well. Still she tried to keep the right foot

forward when she was with me, just as she'd done with the

whole world when Daddy was sick.

When Mother visited during the week, Bill was always there. I

could communicate readily with him, and there was a lot to be

150 BED NUMBER TEN

spelled to him. I could see that she felt left out, but what could I

do? She would pat my foot or leg all the while she was there,

transmitting her feelings of helplessness over not being able to

do anything to make me better.

Mother tried to hide anything bad from me, but she wasn't

successful. If she had an upsetting day or was particularly

unnerved by seeing me, I always knew it. It showed all too

clearly in her eyes, even in her posture. Some days she left very

quickly—to go outside and have a good cry. But always I knew.

Mother's feeling of exclusion troubled me. Bill had always

gotten along very well with my mother, but he was so busy

taking care of me and everything at home that there wasn't time

or opportunity to offer her any support. He was barely getting

through each day himself. Yet she needed him, and he needed

her. Each was so afraid of upsetting the other that they did

nothing to reach out and share their pain. So, except for our

Saturday mornings and occasional Sundays when she was alone

with me, I could see that Mother felt shut out, and I knew of no

way to undo the situation. Oh, please, God, I must get out of

here and back to my family again.

"February 10:10 weeks. Mouth saliva always problem. Cough-

ing."

—from Bill's diary

Visitors were such a blessing. My friend Jo from church still

came regularly—often with another member of the congrega-

tion. Tonight she arrived with Ruth. Immediately my cubicle

radiated with Ruth, a warm, expansive person who spreads love

wherever she goes.

"Hello, honey," she said with her usual sincerity. To Ruth,

everyone is always a sweetie, or dear, or honey. Normally, she

also freely administers hugs or a kiss. But after studying my

tubes and wires for an instant, she settled for a warm hand

embrace. Jo stood quietly at the foot of the bed, enjoying Ruth.

"My, we have missed you at church, dear." Immediately, as

BED NUMBER TEN 151

she talked, Ruth reached for a washcloth, wet it, and began

wiping off my face. I remembered that she was trained as a

nurse. "But we're all keeping posted on your progress every

Sunday. Sam gives us a weekly report." The washcloth felt so

good. Her touch was perfect, firm enough to clean off the

perspiration and drooled saliva, yet nonabrasive. Ruth, that

feels so good!

As Ruth moved from one side of the bed to the other, Jo

stepped up to the bed. Her smile and handclasp were so warm

that she needed no words. We both just listened to Ruth's

pleasant monologue.

Ruth finished washing my face and pulled at a loose corner of

the sheet, drawing out all the wrinkles. Hmm, could I possibly

get her to do a little in-service training for the staff? "I try to

catch Bill after service to ask about you, but he rushes out as fast

as he can."

Comes here. Jo interpreted the spelling, as Ruth plumped the

pillows at my back. "Of course. We all understand. Who

wouldn't come rushing to you?" Her laughter was a delight.

Then she sobered. "But we do worry about him, Sue. He never

smiles, and he's looking a little thin."

Is thinner. Too busy. And certainly there isn't much for Bill

Baier to smile about these days. All the while Jo translated and

smiled warmly, her expression full of understanding and caring.

Ruth replaced and fluffed the pillow under my head.

"There. Is that better?"

Yes. Thanks. Thank you so very much for noticing.

"Does Bill have anyone he can talk to, Sue?"

Me. Talks to me.

"Oh, I know, honey. Of course he talks to you. But I mean

someone to really talk to."

I guess no one else could understand that from the very

beginning of my illness, Bill shared everything with me, good

and bad. If the car needed new tires, he'd say, "Sue, would you

believe . . . ?" He'd tell me when the refrigerator broke down,

or he was concerned about the girls—even about the hospital

bills. Throughout our marriage, we have always shared every-

152 BED NUMBER TEN

thing, so now he just continued. This kept me from worrying

just about myself and shifted some of my concern to the stresses

Bill was facing.

As Ruth tugged on the sheet to get out one last wrinkle, Jo said

softly, "Tell Bill we're here if he needs someone to talk to."

Yes. Yes, I would tell him. And I knew he would appreciate the

offer. But Bill and I were both brought up believing that you

keep your troubles to yourself, within the confines of the family.

You don't tell the world. We were taught to be private. Every-

body has problems, so you don't bother other people with

yours. You handle them yourselves. Bill Baier would share his

heartache where he always had—with me.

"Bye-bye, dearie," Ruth said, and this time she did find room

for a hug, as Jo looked on, still smiling. "I'll be back soon, I

promise." I hope so, Ruth. I hope you both come back soon. The

contrasting radiance of the two, like a multicolored rainbow,

lingered long after they left.

How fortunate we were to have an extended family like the

people at St. Philip. Religion was important in my home as I was

growing up, but since joining the congregation at St. Philip, our

involvement had become more of a way of life than simply

praying and Sunday churchgoing.

I was raised Methodist, but I married a man who already was

a deacon in the Presbyterian church—at a young age. Bill grew

up with a neighborhood church in New Jersey, and both of his

parents were involved there. So when Bill came to Houston, it

was natural for him to become involved in a congregation here.

When I met him, I was impressed that as a single man he was an

officer in his church. Our religions were similar, and while we

dated, we visited each other's churches. But I was not settled

into a community in Houston. Bill was. When we decided to get

married, I felt it was important that we share this aspect of our

lives. Differing religions could be a problem in a marriage, and

there was no need for us to have that, so I chose to join the

Presbyterian church. I think it bothered my parents a little, but

they felt it was my decision to make. It is a decision I have never

regretted.

BED NUMBER TEN 153

Once we joined St. Philip, I eventually became involved in

The Women of the Church, a group that sponsors a wide range

of projects for various needy causes. Sometimes we have food

drives, or we get together to roll bandages or make gowns for

newborns. At Christmas we ask church families to prepare

"seamen's boxes" for mariners who are staying at the Houston

Seamen's Center between sailings—away from their families

over the holidays. The contents are practical—a pair of socks,

stationery, a pen, soap, a comb, toothpaste—anything that will

let the men and women know someone in Houston cares about

them at Christmastime. Through The Women of the Church, I

have made many friends, such as Jo and Ruth.

How I missed going to church with Bill now. I was always

proud and happy to stand beside him during services. And I

missed our couples' Sunday-school class. We have been with the

same group since we came to St. Philip. The members are all so

stimulating, and our studies of current issues, as they related to

Scriptural teachings, have broadened my perspectives immea-

surably.

The visit from Jo and Ruth again made me realize how much I

missed all those wonderful people who have become such a

large and important part of our lives.

Any part of me that moved even a little was encouraging. One

day I found I could move one big toe up and down ever so

slightly. I could hardly wait to tell Bill that something else

moved, at last. He studied the toe from several angles, obviously

intrigued. Was a new idea taking shape? Nearly every day I

complained to him that people still were ignoring me and my

sleighbells, so his mind was back to work on the problem.

Before long, he walked in smiling.

"I think I have an alarm system for you." He was holding an

old-fashioned brass alarm clock, the kind with the two big bells

on top. Everyone standing nearby stopped to watch. They knew

Bill was a no-nonsense person, and they really seemed to respect

him.

"For the system to work," Bill explained, "the clock must

never be wound." As he spoke, he glanced at his audience,

154 BED NUMBER TEN

checking to see whether they were listening. "The alarm must be

set to the same time as the clock." Then he wound the alarm

only, showing everyone that there was tape over the winding

button of the clock. Next he removed a length of string from his

pocket, tied it to the alarm switch, and then pinned it to the sheet

to keep it taut. I could visualize what was coming next and

laughed to myself as he tied the other end of the string to my toe.

"There. Now, Sue, move your toe."

Still smiling to myself, I waited for an imaginary drum roll.

Then I consciously moved my toe forward. It triggered the

clock's alarm lever, and you could hear it all over ICU! Those

who weren't already watching came over to see what was

happening. There was laughter and clapping. What a relief to

have a "call button" that would command attention. Bill was

obviously pleased that his idea worked and that the staff was

enthusiastic about it. But he soon sobered, knowing he had to

get his message across to everyone. Running his hand along the

string, he reiterated the process.

"Once the alarm runs down, someone has to turn off the

switch, rewind the alarm, and reset it." Everyone nodded agree-

ment. But already I could name the staff members who would

remember and those who would forget—on this shift alone.

Plus there were two other shifts and all the relief people.

For a few days, "Sue's alarm" intrigued everyone and became

quite a topic of conversation. As new people came on duty and

saw the shiny brass clock, some even asked about it. They

studied the system and gladly learned how to do it. Others were

shown how to use it but never did. Still others just shrugged and

ignored it.

But at least I had a way of getting attention.

If the clock was wound, Bill explained, it would kill the

system—thus the piece of tape over the clock-winding stem.

Some still couldn't understand, however. I watched helplessly as

Louise tore off the tape. "There," she said proudly, winding the

clock, "now it will work. Can't set off an alarm without the

clock being wound, too." For once, she even managed to trigger

it properly—to make it go off every time the clock arrived at the

BED NUMBER TEN 155

alarm time! Fortunately, Kay noticed the ticking clock, and she

turned off the alarm switch. But I was without my signal until

the clock ran down twenty-four hours later.

Like the bells, this alarm, also, was something I did not use

unless someone I could trust was available. The night after Bill

brought in the alarm, Aurilla was my nurse. Bill very carefully

described the system to her. Later, when I desperately needed

turning, I triggered it to call her. She came running, her arms

waving. It upset her, just as all the monitor alarms did, and she

started fooling with the respirator, thinking it was causing the

noise. Then she walked off, with the alarm still jangling until it

ran down. She hadn't asked me what I wanted—she just fouled

up the dials of the respirator. Now I remained uncomfortable,

needing turning and a respirator adjustment, until I could signal

a therapist to reset it.

For over two months, I wore gowns with the same little blue

print. I was so tired of that "feed-sack" print, and wearing the

same thing day after day. Every once in a while I noticed a gown

with a different pattern in the clean laundry stack that was

rolled by my cubicle. One day Harriet pulled out one—a yellow

and green model—for me.

How nice . . . a change!

I felt I'd been in a prison uniform all this time, depressed by

the awful sameness—as well as by my greasy hair and perspiring

face. Finally, I had a different gown! Silly, perhaps, that some-

thing so minor could mean so much, but for me, the whole

world had drawn into smaller, narrower focus.

Even Bill noticed the "new" gown when he came. His eyes lit

up. "You're wearing something different!" That was a look I

hadn't seen for a long time. It almost made me feel feminine

again. I love pretty clothes and make most of my own. It has

always been fun to model something new for Bill. He's a very

frank reviewer. His enthusiastic response now was indicative of

just how long I'd worn that same tired pattern.

The different gowns—left over from separate purchase or-

156 BED NUMBER TEN

ders—came in a variety of patterns. Several of the morning

nurses began going through the laundry each day when it came

in, and if there was one different gown, they slipped it stealthily

into my cubicle. At least twice a week, I got a different gown.

Hallelujah!

Katherine's ski trip was scheduled for the midterm break. I

began to wonder if she had everything she needed, but it was

impossible for me to be of much help in getting her ready. My

questions, as usual, went to Bill and then long distance to

Katherine. Surely Elizabeth would have given her suggestions,

too.

I had to keep telling myself that Katherine was a big girl, living

away from home. She could take care of herself. Perhaps my

apprehensions derived partly from being a nonskier. Still, I was

pleased that the girls were having these opportunities. All that

snow, of course, was exciting for my Houstonian daughters.

Katherine did not remember her first blizzard in New Jersey,

and measurable snow on the ground was rare in Houston, but

they both remembered snow in Europe.

The year we lived in Holland, we were sure they'd see a

snowfall, but Holland had an extraordinarily warm winter.

Friends told us it snowed three times that year in Houston, but

there was none in The Hague. So we decided to search out some

snow. At Thanksgiving, we traveled to West Berlin. It was

frightfully cold and there was ice on the ground, but no snow.

One afternoon we lost ourselves for hours in a fabulous mu-

seum, a small version of the Smithsonian. All of a sudden, Bill

and I looked out of a window and saw that it was snowing! We

grabbed the girls and rushed to the windows.

The guards looked at us sternly. This was not a tourist time of

year, and we probably were the only Americans there. Bill

explained to them in his best German that this was the first time

our children had seen snow. The guards smiled, probably be-

wildered about people who didn't see snow in the winter.

The sweetness of that reverie was halted abruptly. Suddenly,

instead of snow, I saw again in my memory the people of East

BED NUMBER TEN 157

Berlin, and I recalled watching them on our bus tour into the

Eastern Sector. They seemed to be a country of prisoners. Tears

came to my eyes then, and again now, as I look around me. Now

I am a prisoner, just like them.

From my bed I watched the other "prisoners" across the way. I

knew pretty well what was wrong with each of them. Some I

could diagnose by the procedures being done. Others I learned

about from the nurses talking across my bed. On my side of the

room I could only hear the patients, not see them.

In the next cubicle was an older woman—she sounded very

grandmotherly. I didn't know what was wrong with her, but she

obviously was somewhat confused. During the day shift, most

of the nurses were very kind to her, gentle and loving. If she tried

to get out of bed, which happened occasionally, they went in to

her and said, "Now, Mrs. Born, let us help you turn. You don't

want to get out of bed right now." And they would ease her right

back into bed.

But when Bruce came on duty, he had his studying to do. I

heard him tell her he was putting her in restraints because she

wasn't supposed to get out of bed. This really upset me because

he was the only one who did it. It seemed to me such a cruel way

to treat someone so powerless.

I thought back to my own maternal grandmother, for whom I

was named, feeling grateful that she had kept her full faculties as

long as she lived. Mama Sue, as everyone called her, was a

charming, vibrant woman right up until she died at eighty-nine.

She and I were very close. When she heard I was getting

married, she told Mother, "I don't know what I'm going to do if

I don't like this young man." She didn't think there was anyone

good enough for her granddaughter. Then Bill met her. He

smiled and gave her a big hug. "I haven't had a grandmother in a

long time," he said, "and now I have one again." Of course, she

just melted.

Mama Sue lived in Fort Worth for many years, and when she

was about eighty-seven, we planned to stop off and visit her one

weekend, en route to the Six Flags over Texas amusement park.

158 BED NUMBER TEN

When we stopped to see her at the retirement home, she was

determined to go with us. So we decided it would be fun to take

her on some of the easy rides in the morning and then take her

home for lunch and a nap while we went back to the park. No

way. She wanted to go on everything.

I hoped that when Mrs. Born in the next bed got better, her

confusion would clear up. I wanted her to be able to go to Six

Flags with her great-grandchildren and enjoy life as Mama Sue

had.

Eventually, Mrs. Born and most of the others left ICU. I was

happy for them, but I always felt envious and forsaken as I

watched each one being rolled out in a wheelchair.

The first time I was put into a wheelchair, it was not to leave

ICU. Whoever decided such things had ordered that I be placed

in an upright position to start building my strength. I was

excited and frightened. Charles first showed me the chair, which

was soon dubbed "Sue's Cadillac." It was an old-fashioned

wooden wheelchair that looked rather like a high-backed arm-

chair. It had a footrest and many elevation levels. Charles ex-

plained that it could be straightened out nearly horizontal so I

could rest in it, and then it could be pulled back up again to

various angles of straightness, almost like a lawn chair. It was a

monstrously awkward relic, but it was to be mine for many

months.

With much reassuring, Charles sat me up in bed and then

slowly lifted me to the chair. Ginnie and Carol carefully checked

and secured all my tubes and connections. What a chore! I was

settled on one pillow, with another behind my head, and then

strapped into place with a pair of seatbelts. My limp body felt

scarily insecure. I was sure I would fall over. Still, I was sitting

up! All the ICU staff applauded the big move.

The first day I lasted thirty minutes, and Ginnie stayed with

me the whole time. To everyone's surprise, I didn't get dizzy—

apparently extraordinary after all those weeks of lying prone.

But the bed felt good when Charles settled me back into it.

Tomorrow, Charles said, they'd let me sit up a little longer.

BED NUMBER TEN 159

Wonderful! Another step forward. Then I heard them saying

that after this I could be left sitting up alone. That I did not like

to hear.

The next day, however, I was introduced to Dick, a young

man just starting his training in physical therapy. One of Dick's

first assignments was to sit with me while I was in the chair. Dick

was a part-time college student, bright and pleasant, and he was

willing to spell with me, especially about our mutual interest:

the Houston Rockets basketball team. I was relieved to have him

nearby.

While sitting up, I finally could see my legs and arms. It was a

ghastly sight. I was literally skin and bones—Charles estimated

that I probably weighed eighty-five pounds. Bones protruded

everywhere. They were a problem when I was lying down, but

they were far worse when I was sitting, for my weight was

concentrated on a small area. After just a few minutes in the

chair, my hip bones jabbed through the thin layer of skin. Hurts,

I spelled with Dick, and, bless his heart, he tried to move me to

make it easier. He was kind and conscientious.

My fear lessened, but the pain increased. Each day, my time in

the wheelchair was longer and more uncomfortable—more

painful. Ginnie was the only one who seemed to understand

how much I hurt. Whenever it was time for the chair, she came

in with an extra pillow or piece of foam. One day she had me up

so high that I almost wobbled out of the chair. We all laughed.

The staff became convinced that I was afraid of the chair,

fearful I couldn't breathe sitting up. Though breathing was

more difficult, it was the pain that caused the anxiety. I liked

being up. It was good to see the world from another position.

This was the first time I was able to see the wall behind my bed! I

also knew it was good for me to be up, building strength. But

there was no way to tell anyone how much it hurt. The soreness

never left me.

Moving me was an ordeal, requiring three or four people to

lift me and handle all the sensors, the respirator, and the tubes. I

never felt uneasy during the move, though; these therapists were

the people I trusted. Yet it always hurt.

My time in the chair eventually increased to forty-five min-

160 BED NUMBER TEN

utes, and by mid-February, I was at 2V2 hours. I was pleased

with my progress, but the pain had become excruciating. And I

was being left alone—with nobody to talk to, not even the TV

or radio to distract me. The novelty had worn off; the cheering

was over. I had faded into the environment so thoroughly that

no one even saw me.

I'd met Jane through The Women of the Church, but I was

surprised she had time to visit me. I knew how busy she must be

since starting back to school for a degree in nursing. Even more

surprising, someone had taught her how to spell with me.

"What's exciting, Sue, is that right now we're studying

Guillain-Barre." She had many questions. Would I mind answer-

ing them?

No.

"Was there anything besides your eyes that you kept control

over?"

No.

"Did you ever lose the movement of your eyelids?"

Once. Benadryl overdose.

"Are you still getting your monthly cycles?"

No.

"That's probably because of your drastic weight loss. Do you

feel tired most of the time?"

Exhausted all the time. Never enough rest.

"That's the most common symptom, besides the paralysis,

among all Guillain-Barre patients, they tell us."

Question after question poured out. Often she had explana-

tions to give me. How wonderful that this disease is now part of

the course of study for nurses' training. Most of my nurses did

not know anything about these symptoms and what they meant.

As we talked, Jane's eyes scanned the cubicle and the entire

unit. She was doing her rotation in intensive care, and she

observed everything around us, questioning anything different

from what she was seeing in her ICU training. This was fun.

Jane was so happy in her nursing studies. I wondered what

happens to make some nurses lose interest and dedication. I saw

more joy in the faces of the people who picked cotton around

BED NUMBER TEN 161

Richmond and Rosenberg when I was a girl than I saw here. And

picking cotton was terrible work, as I learned during my very

brief career in it.

During the summer after my freshman year in high school, I

found my purse empty and wanted to buy a birthday present for

the boy I was dating. A neighboring farmer leased the land

around our house, and every summer he brought in workers to

pick his cotton. I found out how much they were paid for a sack

of cotton and I watched them scoot up and down those rows,

pulling that cotton and filling their sacks. That looked like a

good way to earn some money. Well, Mother and Daddy were

horrified. "You can get money another way," they said. But the

more they balked, the more insistent I became.

Mother tried reason. "It would be very awkward for the

farmer because you are our daughter."

Finally they decided that the best way to teach me was to let

me do it. However, because I sunburn easily and because my

knees were unaccustomed to crawling, they sent me off to the

fields with a big sun hat, knee pads, jeans that reached below my

shoes, and a long-sleeved shirt. I was a sight! Of course, they

sent a lunch along with me, so I could eat with the other pickers

rather than come home at noon.

My family kept watch from the windows of our cool house. I

knew they were watching, so I put up a strong front. I had to

show them! But it was miserably hot, I was always dripping wet,

and the work was hard. I stuck it out the better part of a day and

filled my sack, earning $13. Then I was finished. But in that one

day I learned a lot about hard work. It amazed me how people

could be pleasant and cheerful under such unpleasant working

conditions.

Within the next few years, the work was taken over by

picking machines. That seemed like a wonderful invention—

except perhaps for the people who needed to do that field work

for something more basic than a birthday present for a friend.

Hooray! Subclavian came out!

I was glad to be able to tell Bill this good news. The subclavian

had been my IV for two months, a long time. I felt enormous

162 BED NUMBER TEN

relief, not only to be rid of the tube, but to be rid of the pesky

sensor attachment that so often set off the monitor alarm. And

the next day, another benchmark: I was quite sure I could

swallow just a little bit.

On Valentine's Day, Bill came in carrying a "card" from Eliz-

abeth. She'd used the largest-size posterboard available, bright

red, and cut out colored pictures of flowers from magazines,

pasting them in the shape of a heart onto the board. It read

simply, "Happy Valentine's Day." I hadn't seen any of her

handiwork for so long. This was fun. It stayed on the wall until I

left ICU and always drew attention. The mail was unusually

heavy this day, and of course there was another Snoopy card,

compliments of George and Hure. But there was also a sadness,

a special loneliness I couldn't seem to shake.

Valentine's Day is always sentimental for me because it is the

day Bill gave me my engagement ring. We had started dating in

September, and on Christmas Day he asked my father for my

hand. But we decided to keep our news a secret until I got a ring.

On Valentine's Day, we had planned to attend the symphony,

but it started snowing and the streets iced over quickly. Bill

called me while we were still at work and said he refused to go

out on downtown streets that night because Houstonians don't

know how to drive in such weather. He didn't mention that he

was working on a plan for us to have a nice, quiet evening so he

could give me an engagement ring.

While he was busily plotting his strategy, I decided that we

couldn't just stay home on Valentine's night, so I called Chickie.

"We've canceled our plans. How would you like to get up a

bridge game?"

Bill was not too thrilled when I informed him cheerfully of

"our" plans. Not only was he not an avid bridge player, but he

had other things on his mind for the evening. Later that night,

after the bridge game, he did give me my ring. I was so excited I

couldn't speak. We were really engaged now! And I had a

wedding to plan. I was going to marry this handsome, gentle,

dear man and become Mrs. William E. Baier, Jr. What a lovely

sound that name had!

BED NUMBER TEN 163

Now that I was sitting up in the wheelchair, I could look at my

bare third finger. I missed wearing my rings and I felt angry with

Bruce all over again. I knew the rules, but knowing them didn't

help. Whenever a female took care of me, I looked for rings, and

I silently and sadly admired all engagement and wedding rings.

I was terribly upset when Carol told me she'd lost her wed-

ding ring down her bathroom sink. Each day I asked about it.

She called a plumber to take the trap apart in hopes of finding it,

but it was lost. At least my rings were waiting for me in the safe-

deposit box.

"February 15: Talk to the lawyer about the will—if Sue inca-

pacitated, provision for everything to be taken care of."

—from Bill's diary

Bill had his hands behind his back as he walked toward my bed.

As always, I was watching the clock this morning. Last night

had been bad. Lately, every night was bad—little time for sleep,

but always horrifying dreams.

I couldn't believe my eyes. Bill was actually smiling, that smile

I fell in love with. At the foot of the bed he paused, eyeing me

mischievously. Then suddenly he pulled his hand in front of

him, and I saw it—one tall, slender narcissus. My eyes filled

with tears—loving, melancholy tears. Bill understood and

kissed me.

"Happy spring, Sue." The words dissolved me completely. It

was our annual ritual—usually I was the one to discover and

coddle the first spike of new growth. This year it was Bill's turn.

We'd had the bulbs sent from Holland to be a special, living

reminder of our spring in The Hague. They were our signal of

spring, Houston's beautiful February spring. Oh, Bill, dare we

hope that our lives are also coming into spring, a time of rebirth?

How I want to go home with you, Bill. The silent words passed

through our eyes. Bill's second good-morning kiss told me he

understood.

Even Penny, a Zeta sorority sister, must have sensed it was a

special day. She sent me a big bunch of colored balloons—

something not yet popular in Houston—with a note saying

164 BED NUMBER TEN

she'd thought about me a lot and felt helpless because she

couldn't do anything for me. What a misstatement. Those bal-

loons delighted me. Penny was someone I'd served on commit-

tees with, but I didn't know her well. Yet she gave me this

buoyant gift.

Soon after Harriet tied the balloons to the side of the bed,

another nurse walked in and said, "We can't have these in

intensive care." And off she went with my balloons! I was

devastated.

Harriet noticed that they were gone as soon as she got back

from lunch. "Where are your balloons?" I glared at the nurses'

station. Off she went in a fury and returned with them in a few

minutes. "You may not be able to have plants, but these bal-

loons are not going to hurt a single, solitary thing," she an-

nounced with determination. She tied them at the foot of the

bed, where I had a good view of them. And there they remained.

Every time I opened my eyes, they made me feel like smiling. I

couldn't tell anyone what they did for me. They gave me a

double boost—because Penny thought of sending them and

because Harriet went to bat for me. Everyone came in and

teased me about them. When the helium failed, they just draped

the limp balloons over the side of the bed and finally hung them

on the curtain.

"February 18: People saying I look like I'm aging."

—from Bill's diary

Elizabeth brought me her invitation to the spring Cotillion—

always a lovely, special dance for girls from the various high

schools in West Houston. She knew I would be interested be-

cause I was a member of the Cotillion board and had planned

and helped with several functions. Immediately my mind raced

into gear. She'll need a new formal.

Before I could jump too far ahead, I saw the look on Eliz-

abeth's face. "Did you read it?" she asked indignantly.

I hadn't had time, but she was still holding the invitation in

front of my face.

"Can you believe it? The Cotillion is having a 'kicker' dance,"

BED NUMBER TEN 165

she said. I hadn't noticed. I'd been concentrating on the date. I

read it. It was to be a country/western "kicker" dance. Her

expression was a mixture of disdain and disappointment. I

couldn't blame her. Elizabeth loved dances, but country/western

was not her favorite. They were all right for club parties, but

certainly not for the Cotillion. To Katherine, "kickers" were the

best way to go, but Elizabeth liked formals. How different these

girls are!

"Oh, Mother, this just isn't right." I knew what she was

leaving unsaid—if I'd been at the board meeting, I might have

been able to change their minds. Well, I'm not there this year,

Elizabeth. You'll just have to pull on your jeans and go have fun.

At least I didn't have to worry about a long dress for her. Still, I'd

love to have that formal to worry about.

Dressing my girls has always been pure joy for me. When they

were little, I took great pride in their appearances. I polished

their little saddle oxfords every night. It seems I spent my life

back then whitening scuffed toes. When the three of us were out,

people smiled at them and even stopped to compliment me on

my daughters. One woman approached me in a department

store to say, "Excuse me, but may I tell you how loved your

children look? I can tell by looking at them how you care for

them."

They sometimes enjoyed having matching clothes when they

were in lower elementary school. One spring, I bought them

twin outfits with red blazers, blue-and-white-striped knit tops,

and blue pleated skirts. I even found red-and-blue dress shoes to

match. Many people commented on those outfits, and I was

proud of them. I still love shopping with them for their clothes.

It would be fun to look for a Cotillion gown now for Elizabeth,

but we were both to be disappointed.

I was getting so tired I could scarcely face each new day.

Therapy was becoming more extensive, and then there were

breathing treatments, feedings, and all the hours sitting in the

chair. The pain in my abraded hips never stopped, and it sapped

my strength.

I was often left alone in that chair for three hours at a time,

166 BED NUMBER TEN

staring in whatever direction I'd been pointed. The frustration,

boredom, and pain were totally exhausting. Life here in ICU

was like a roller coaster—highs and lows. But the lows were

getting deeper. Was there a bottom?

I was concerned about my ability to handle everything much

longer. There had to be something to give me the energy to make

it through the day.

Need vitamins.

So Bill talked to Dr. Lohmann, and he ordered vitamins. Why

doesn't anyone else think of these things? Must I be my own

doctor, too?

"February 22: Looks bad. Feeling of dread."

—from Bill's diary

I didn't like taking tranquilizers, but whenever I got upset, they

administered them. I had to get some of the frustrations re-

moved if I was to avoid getting them. And Aurilla was my

biggest single frustration. She was always there.

I had to get through to Bill somehow. But whenever I com-

plained, he just sighed in resignation and dutifully wrote the

complaints in his book.

Since Aurilla upsets me, why can't we get her off? Can't

communicate, suction. When I sweat, why can't they wipe me

off? Will need more Valium.

The words were becoming too familiar now for Bill. Just as

the staff no longer saw me, Bill no longer was hearing me. Even

as he wrote the words in his book, they became invisible to him,

too. I saw it in his face and I felt betrayed. He was the only one I

had to help me.

"February 26: Lohmann says: Blood gases not good. Infection.

Antibiotics begun. Birmingham says: In one or two months, we

will sit over a good drink and smile."

—from Bill's diary

Some mornings were worse than others. Today I was very low.

Will this really ever end?

"Good morning. I'm Paulette, your nurse today." Oh, no,

another new person! I can't deal with anyone new today. "I'll be

back in a little while with your bath."

Another new nurse.

By now Bill dreaded new staff as much as I did, and he

especially disliked getting bad news first thing in the morning.

Immediately he called her over to explain how to spell with me.

She seemed to understand. That was a hopeful sign.

After Bill left for work, Paulette returned, as promised. She

began my bath, and I knew immediately she sensed everything I

was feeling. Her warm, brown face smiled kindly, empathet-

ically. She was efficient and thorough. My goodness, she's won-

derful, I kept repeating to myself. Where did she come from? She

had the maturity to understand what I needed and the skills to

make me comfortable.

By the time Bill came at noon, I could hardly wait to tell him.

Feeling better. Nurse Paulette really good.

He shared my elation. If only I could have her every day,

intensive care just might be tolerable.

But good news seldom could be savored for very long. A new

blow: Kay was leaving to accept a position in respiratory

therapy at another hospital. She had received such a good offer,

she said. But all I could think was, How could she leave? She's

been my overnight life-saver. I was devastated.

That evening Bruce had me, and, noticing my teeth were

discolored, he decided to do something about them. Apparently

they had become discolored because of lack of good, regular

cleaning and the constant stagnant saliva accumulating around

the teeth and gums.

167

168 BED NUMBER TEN

"I'm going to clean your mouth with peroxide," he said.

Surely he can't mean that. I watched in disbelief as he plunged a

large swab into the bottle—pure peroxide—and suddenly he

began gouging, forcibly jabbing the peroxide-soaked swab into

my mouth and into my gums and teeth. I screamed silently in

agony and rage. And I became frightened. Could he read the

expression in my eyes? I fought not to show any sign of disap-

proval, because the more upset I would become with him, the

rougher he would get.

"I'm just doing this for your own good. Your teeth need

cleaning," he said flatly, forcing my lips to stay apart. The

peroxide frothed from my mouth; its vile taste gagged me and

burned every crevice. Still he slammed and jabbed the swab into

my teeth and gums. My eyes rilled with involuntary tears. Mo-

ments seemed hours as I fought off hysteria. Finally he stopped,

but the pain and burning did not.

I watched the hands of the clock, waiting for Bill. He prom-

ised he'd come back tonight. Where was he?

Before I could begin spelling, Bill recognized the look in my

eyes. Tears rolled down my cheeks as I responded to each letter.

Bill's face turned red, then ashen. He wheeled around in a sweep

of anger and called Mary Jean. This was the first time he had

ever called her to the bed.

"Look what Bruce did. He cleaned Sue's teeth with pure

peroxide. He was rough, and he hurt her. Look at how upset she

is."

Even Mary Jean was taken aback. Another first: In front of

us, she said to Bruce, "Please don't do that to her again." Then

she turned to me and said, sweetly, "But, Sue, he did mean well."

Don't tell me that. I don't want to hear any more about people

meaning well. I am a patient. I am a human being. It costs

nothing to be kind and understanding—to dilute peroxide, if it

must be used, and to be gentle and reassuring. I am tired of

trying to understand people who "mean well." It was hard to

hold back the tears. Gently Bill dried my eyes, wiped out my

mouth with tissue, freshened it with a half-dozen sixty-cent

lemon swabs!

After Bill left, I drew some comfort in realizing that this was

BED NUMBER TEN 169

the first time anything bad had been halted at the start. For the

first time I saw Bill Baier take a stand with me against them.

Three cheers for Bill!

Later, Bruce came to turn me. There was no recognizable

expression in his eyes or in his voice. "Your teeth needed it, you

know. Now it's done."

With growing concern now, I watched my fellow patients from

my silent perch. I watched their nursing care—some good, some

bad, and some that was heroic. . . .

Paulette was always terrific, both with me and with others.

She seemed easygoing, yet a real perfectionist. She even looked

like someone who did everything well.

One day, as Paulette was going off duty at three o'clock, the

nurses were having difficulty stabilizing a patient on the other

side of the unit. They had called several codes for him already.

The head nurse asked Paulette to stay for another shift, just to

look after this patient. For eight hours she fought for his life, and

I fought silently with her, wanting her to win. I watched her use

electric shock paddles to revive him. Then she worked on his

chest with her hands—anything to bring him back and keep him

going. She had worked hard for eight hours with me and her

other patients, plus the codes, and now she was repeatedly

reviving him. I knew how exhausted she must be, but she never

gave up.

Finally, at eleven, Paulette had to leave. An intense sixteen

hours had left her visibly exhausted. I watched the next nurse

come on duty, but she didn't seem to tend him with as much

determination. I supposed the man was ready to die, anyway,

and he did—shortly after the new nurse came on. It probably

wasn't her fault, but it upset me that he died after all of

Paulette's efforts. When they pulled the equipment away from

his bed to make room for the stretcher bearers, I cried. If

Paulette were still here, would he have lived?

"March 3: Shortage of nurses and therapists."

—from Bill's diary

170 BED NUMBER TEN

Another new respiratory therapist—Don. He was frighteningly

rough. He was from an agency—by now I knew that only

agency people wore name tags. The first time he had me, he was

abrupt. He jerked my head into position and suctioned me,

without doing it completely. Here we go again.

But Don did spell with me. And a miracle happened: I told

him he was rough, and he changed!

He told me one evening later that he became a respiratory

therapist because he was nearly killed in an automobile acci-

dent. He'd "been there"—ICU, respirator, everything. After he

came out of it, he decided this was something he had to do. And

from that first night, he never objected to my calling him on

something or reminding him of a missed procedure. When Earl,

the director of respiratory therapy, came to check me, which he

did periodically, I made sure to tell him about Don. I wanted

him to be called for relief work whenever possible.

Don talked about his children. When he saw I was interested,

he told me about his divorce and the fact that his wife had taken

their children to El Paso. He brought in their pictures for me to

see. I knew when he had talked to his children and when he was

disappointed because he hadn't been able to. But his disappoint-

ments never detracted from his work. Often he spoke of his

loneliness and a feeling of isolation. These were emotions I

knew, and he seemed to understand that.

Something strange was going on with my case, and I was trying

to put the pieces together.

Funny. Birmingham, Gary, and Earl—each one—says he's in

charge. Bill, too, was noticing this.

Finally, we began to see the picture. All three—an anesthesiol-

ogist and the heads of the physical therapy and respiratory

therapy departments—were telling the staff what to do. Each

one was now telling me—and Bill—"I'm in charge. You listen to

me and not the other two." Yet none of these men was the

internist on the case. Dr. Lohmann still came every day, read my

chart, and issued orders. But now there were other orders,

issued by Birmingham—the one I wondered about most. His

role in my care was still very fuzzy in my mind.

BED NUMBER TEN 171

Bill would corner each of them, including Gary and Earl,

whenever he could, trying to determine some strategy, some

course of action for my care. Each man always came across as

caring and confident about the outcome of my case, although

they all recognized conflicts in my care program. Gary said too

many things were interfering with my physical therapy pro-

gram, which was true. No one wanted to set a schedule with PT,

so therapy had to be worked in whenever possible.

Respiratory therapists seemed to be doing their part, and that

had to come first. I had to get off the machine to get well. Earl

assured Bill that I was right on schedule with my breathing. He

was on top of the situation.

But Dr. Birmingham was always an unknown factor. He had

his own strategy worked out for me, he said. Bill should leave

everything to him.

All of this was upsetting Bill, but he didn't know what to do.

He kept asking each of them, "What's your plan? What do you

foresee happening when she comes off the respirator? Or when

she gets over this infection? What have you worked out?"

Supposedly all of these people were meeting together to assess

my case and plan strategy. In fact, they all met together with Bill

only once, each reporting what he was going to do. Then, each

of them later talked to Bill reassuringly, saying virtually the

same thing: "Now, don't worry. I'm in charge. I'll take care of

everything." Bill could not relate to such irregular management

practices. Who was in charge?

As for Dr. Lohmann, Bill didn't know what to make of him

and his relationship with the others. The doctor did not seem to

play a part in what the other three were doing or saying. I knew

he was convinced that I was getting the best of care, but I could

not figure out where he fit into all of this. He was my doctor, but

he wasn't a part of the "trinity."

Dr. Lohmann greeted me every day in exactly the same pat-

tern. "Hello, Sue." Then he'd reach for my radio and turn it off.

"Let's turn this down while I'm talking to you." I'd wait, won-

dering if this finally was the day he was going to talk to me. He'd

glance at the chart and ask the nurse a question or two.

"Did she sleep last night?"

172 BED NUMBER TEN

"Yes, doctor, she had a good night," the nurse answers.

No. In fact, I didn't sleep at all. No one ever got me comfort-

able. But Dr. Lohmann never looks at me to see my answer.

"Any problems with the feedings?" he asks the nurse.

"No, doctor "

Yes. Yes, doctor. I have always had a small stomach. They're

shoving so much of the supplement down me that sometimes I

feel sick. Bill says I should just let it go sometime—throw it up all

over them. But I just can't do that, doctor. Please, doctor, look at

me and let me tell you.

He looks! I blink frantically to signal him that there's some-

thing I need to say.

"See what she wants, nurse." Then he is gone—and again, just

like every other day, he has left my radio off. The nurse leaves

with him.

"I'll be back in a few minutes, Sue," she says. But she won't.

She'll be back when it's convenient for her—or in another hour,

when it's time for my next feeding.

Why can't he try to communicate with me? And why is all this

in-fighting going on over me? Who is in charge? How do any of

the nurses and therapists know what to do when all these "in-

charge" people don't know who is in command?

Only one member of the staff ever acknowledged this mount-

ing chaos—my advocate, Charles. He was the one constant

factor each weekday, a totally loyal champion in a world that

seemed to have forgotten I was human.

Charles was "popping" my toes. This little procedure at the

end of the leg and foot movements had become a kind of game of

ours. He would pull each toe one by one so the knuckle popped.

All the while, he'd look at me and smile, and his eyes would react

with a little extra sparkle when each toe snapped. At first, I

worried about this, remembering the old wives' tale that pop-

ping joints made them grow larger. My feet are big enough—

how big will they be if he does this two or three times every day?

But I knew that was nonsense, so I relaxed and enjoyed the

experience, often singing to myself, "This little piggy went to

market.. . ." Such a small silliness was often the bright spot of a

bleak morning or afternoon.

BED NUMBER TEN 173

H am going oft vacation, Sue, starting next week." Charles

was trying to smile as he said it, but there was concern in his

face. As his words sank in, terror seemed to make all my useless

muscles recoil. I felt sick to my stomach and fought for control.

Yes. Stay calm, Sue.

"It'll be all right, Sue. Ginnie and JoAnn will be here to take

care of you, and I'll be back in two weeks." Charles read my eyes

better than anyone at the hospital, so I made myself not cry, at

least until he left. Then everything poured. How could I survive

if Charles left me for two weeks? I trusted Ginnie and JoAnn,

but Charles was so much a part of my day—from that first visit

in the morning, carrying his cup of coffee, until the late-after-

noon workout. He was the one staff person I always could count

on. Now he'd be gone for two weeks. But I would survive, I

assured myself. I had to.

"March 6: 7:00, Elizabeth dance pickup. Sue wants two visits."

—from Bill's diary

Bill occasionally had a luncheon meeting and could not come in

for the noon visit. In these rare instances he arranged with one of

my friends to cover for him. Today it was Bess. I knew she was

coming, and I was waiting eagerly for her when she arrived. I felt

all smiles when she walked in.

However, right behind her was Gary Stiller. Bess looked as

surprised as I was to see him.

"Sue, we're going to try something." I didn't like the sound of

that—especially when I wanted to visit with Bess.

"We're going to take you off the machine for five minutes."

My eyes darted to Bess. She looked as unsure as I felt. "We've

been doing tests and we know you can stand it. You've already

done two minutes." Fear mounted. That was different! I hadn't

even known what was happening then, and two minutes is not

five minutes. Besides, then I had Kay and Harriet. "All you have

to do is blink when you want me to put you back on." That was a

relief. Maybe I could handle it. "I would very much like for you

to go five minutes if you can, but you don't have to."

174 BED NUMBER TEN

I looked at Bess again. Her eyes were riveted on Gary. You

fox, I thought. Bess is here, and he's tied this all together. He's

using her visit so I won't protest. But why was he the one doing

this? He was no longer head of the respiratory therapy depart-

ment. Earl was.

Bess was at my side, clinging to my hand. Her touch and her

eyes told me it would be all right. She'd make sure I got back on

the respirator when I needed it.

Gary removed the respirator connection from my trach and

attached the oxygen tube. I looked at the clock. I was annoyed

that he played this game of using Bess, but I was determined to

last the five minutes if I could. I'll show you, Gary Stiller. And if I

can do it, if only I can do it, I'll be closer to getting off that

machine for good.

I watched the clock, counting off seconds; one minute, then

two. I glanced at Gary, who was checking his watch. Three-and-

a-half minutes. Why wasn't Earl or Peter trying this? Another

power play of Gary's, I decided.

The second hand slowly crossed the fourth minute, and I was

still breathing on my own. I looked at Bess. Her hand squeezed

mine, support that came from years of caring.

The seconds counted down, seeming almost to stop at times,

but I made it! A surge of excitement came over me as we all

ended the countdown together. Bess was laughing joyfully. Even

Gary's voice had an edge of excitement to it.

"I knew you could do it, Sue. Five minutes! I knew you were

ready. We just had to try you out and see." Then I realized that

despite the battle to see who was boss, Gary had done what

needed to be done. He'd just decided on his own that the time

had come, and he'd been right.

"Now you'll be able to try longer times, Sue," Gary said. "It

won't be long now and you'll be off the machine, I promise

you." I had the feeling he might be right about that, too.

After Gary reconnected me to the respirator, he left. It was

then I noticed Luana at the foot of the bed. She wasn't my nurse

that day, but she was there rooting for me. "Oh, Sue, I'm going

to call Bill!" She was so excited.

BED NUMBER TEN 175

Finally Bess and I had some time alone together to spell and

talk. We were both still giddy with excitement, and her news of

family and friends flowed freely.

Suddenly, my eye caught a glimpse of a figure at the foot of my

bed. There stood Bill Baier, looking proud and happy. I wanted

to shout: Did you hear what I did? Obviously he had heard, and

he read the delight in my eyes. It was a triumphant moment.

During her next visit, Bess told me, "That day, after you

breathed alone, I was looking at you while we talked. Suddenly,

I saw a glow come over your face. Even though you couldn't

move a muscle, your face radiated the moment you saw Bill." I

had felt the glow, but I couldn't imagine that anyone could see it.

Only Bill makes me feel that way.

Charles returned from vacation, and I was eager to hear all

about his trip. But first I had to show him my newest accom-

plishment—pulling in my stomach muscles.

"What on earth are you doing?" I had never seen Charles look

so cross. Even Ginnie, who was with him, looked surprised.

Birmingham gave exercise for stomach. One day when Dr.

Birmingham noticed that I could move my stomach muscles a

tiny bit, he told me about an exercise I could do to strengthen

those muscles. So I was doing it often on my own whenever I

was alone and needed something to do. I was ready for anything

that might strengthen my abdomen. I was sure Charles would be

pleased.

"You are going to undo everything I've been working on," he

said, almost shouting. "We don't need those muscles strength-

ened now. If they get overdeveloped, it will be harder for us to

build up the back muscles when we try to sit you up."

Weeks later, Charles was still fighting those muscles I had

worked so hard to develop.

Bill continued his efforts to sort out the problem of too many

bosses. Perhaps it was the manager in Bill that directed his focus

toward what was clearly a management problem. His diary was

filling with notes about it: Talked to Birmingham. Talked to

176 BED NUMBER TEN

Earl. Talked to Gary. Talked to Lohmann. Each had a different

approach.

My latest and most urgent pleading had to do with schedul-

ing. Fatigue was becoming more serious every day as more and

more therapy was being done with me. I needed a little rest

period between my bath and physical therapy. But there was no

time for rest. No one was coordinating schedules among the

various departments. I was caught in the middle of what seemed

to be a tug-of-war.

Anger, exhaustion, depression. I felt locked in the unending

cycle. The tears began to flow every time I saw Bill. He struggled

through my spelling out every frustration, and whenever I cried,

he cried. His anguish made mine even more unbearable.

Then finally came another breakthrough.

Day after day, I continued to monitor myself, testing every

muscle from toe to head. Then I suspected something new was

occurring, but I couldn't be sure. One day, I was conscious that

it was happening. I felt myself swallow, just a tiny amount of

saliva. For some time James had predicted that this was immi-

nent, as he saw my gag reflexes slowly returning. But was this

certain? Could I trust that it was going to continue? That awful

morning when I awoke, unable to swallow, came back vividly in

my thoughts. But I forced my mind to concentrate on the

positive. I can swallow again!

I began to think about the taste of food. Dwelling on food was

a luxury I had not allowed myself for many weeks. Only when

some unthinking nurse came near me, eating a sandwich or a

cookie, would I covet food. Then I'd be tormented for hours,

craving the taste of something.

Elizabeth came in several days after that first real swallow. In

the midst of one of her animated stories, Dr. Muenkel entered. I

was surprised when he picked up my chart and studied it.

"What has she been given to eat or drink since she began

swallowing?" he asked.

"Nothing, as far as I know," replied the nurse.

"If she can swallow, why aren't you giving her anything

orally?" The nurse appeared a little bewildered. "Get her some

BED NUMBER TEN 177

ice chips." The thought of ice chips was magnificent. Elizabeth

watched the scene curiously as the nurse left to get the ice.

Wonderful. Elizabeth smiled at me and then interpreted for

the doctor.

"My mother likes the idea of having some ice. I think this will

be a first since she got here three months ago." She looked back

to me.

Yes.

"Well then, Sue, I wish I could offer you something more

spectacular for your first taste," he said.

Just fine.

The nurse brought a cup of crushed ice and held it out,

uncertain what to do with it. Dr. Muenkel took the cup from

her, set it on the table, selected one small ice chip, and positioned

it on my tongue. It was cold, wet, and fresh. After a moment of

pleasure, I started thinking about my throat. A swallow is not

something one can see, like the movement of a toe—an accom-

plishment that I still found pleasant to watch. I concentrated,

closing my eyes to avoid distraction. Then I felt muscles move

ever so slightly, and the drop of melted ice slid down my throat.

My eyes flew open in excitement.

Elizabeth smiled quietly at me, and Dr. Muenkel grinned

broadly at both of us. He turned to the nurse, who also caught

some of the enthusiasm. "Now, give her a few chips every couple

of hours—and anything else she feels she can swallow." She

nodded. "Take care, Sue. And enjoy anything you feel like

ordering."

I was delighted at this new step and pleased that Elizabeth

could share the moment. So often she saw only the bad times,

with any good news coming secondhand from Bill.

"I can't wait to tell Daddy," she said. "He needs some good

news."

Yes, he does.

"I haven't told you, Mother, because I was afraid to worry

you "

Yes?

"So often at night, after we eat, Daddy goes up to his room—

178 BED NUMBER TEN

your room—and shuts himself off. Sometimes, often, I can hear

him crying. Sometimes I go to the door and want to go in, but I

don't know what to say to him—except that I know you're

going to get well. He knows that, too, doesn't he, Mother?"

Yes. He knows. Yes, Elizabeth, he does. And it is his faith that

has kept me going. But there's no way to explain to you what he

is going through.

"Well, at least I have some good news for him today." Reach-

ing carefully around the tubes, she hugged me. "I love you." I

love you, too, Elizabeth. "See you later."

It was a comfortable time for rest.

When Bill came in that night, he wore a huge smile and carried

a container of ice cream! It looked heavenly. I struggled to make

the first tiny drop go down, but it just coated my mouth. Ice

cream was not going to work. Bill tried a second and third dab,

but it just clogged my mouth. The look of disappointment on

Bill's face mirrored my feelings. I'm so sorry, Bill. I want to eat it,

especially for you, but I can't. I love you for thinking of it. Please

understand.

"March 7: I took ice cream. She didn't want it."

—from Bill's diary

My times off the respirator, breathing with only supportive

oxygen, were stretching out. Finally, on March 9,1 was off the

respirator from early morning until evening. It was a milestone.

The next day, I made a decision. I was going off the machine for

good!

James came in to reconnect the respirator that evening.

No. I'm off machine!

His expression was jubilant. "Are you sure, Sue?"

Yes! The answer was emphatic, but suddenly I was struck

with a twinge of doubt. Leave machine here.

"Changing your mind already?" His grin was all the challenge

I needed.

No! There would be no change of mind now. Still, I needed

the security of having it by me—just in case something went

wrong. I'd had too many disappointments already. I would rest

easier with the security of that now-silent machine next to my

bed.

Rest, however, did not come that first night. I was afraid to go

to sleep. Could I really continue breathing on my own—es-

pecially if I was asleep and unable to make myself take the next

breath? All night I monitored my body—and studied the clock

and the ceiling light.

I hated that light. I closed my eyes and tried to think about

darkness. Light still shone through my closed eyelids. What was

darkness like? I couldn't remember; I couldn't feel darkness any

more. The one darkness I could visualize now was a memory of

a long-ago episode when we had no lamps in the house. And that

I remembered because Bill would never let me forget!

Before Bill and I started dating, he bought a house from a

couple getting a divorce. They wanted to sell the place fur-

179

180 BED NUMBER TEN

nished, and that suited bachelor Bill just fine. It seemed like a

good investment. As long as the furniture was functional, he

wasn't particularly concerned with how it looked. When we

became engaged, I got a lot of teasing about marrying Bill for his

house. Actually, I thought it would be fun to start out in an

apartment like all the other young couples we knew. I wasn't

sure I was ready for the responsibilities of a three-bedroom,

two-bathroom house. But we had the house, and I knew I was

lucky.

But there was not a thing in the house that looked like me. It

was furnished in ultra-modern style, something that might have

worked in an office, but not a home—not my home. Of course,

Bill thought it was wonderful that we had everything we could

possibly need.

Right after we returned from our honeymoon and Bill went

back to work, I studied those rooms. Suddenly I had what I

thought was a wonderful idea. I called Goodwill Industries and

asked them to come immediately. I gave them all the accesso-

ries—every picture off the walls and every lamp in the house. If I

got rid of those things, I reasoned, I would have made a start at

making the place feel homey. At the time, I didn't think I was

being frivolous. I couldn't wait to show Bill what I'd done.

He stared at the walls and bare tables in utter disbelief, as if

someone had just knocked the wind out of him. "Sue, how are

we supposed to buy new ones?"

I hadn't thought about that. What a quick education I got in

the cost of home furnishings!

After two nights of a totally dark living room, Mother and I

went shopping and found a pair of lamps on sale, so we finally

had some light. But the rest—pictures, accessories, and remain-

ing lamps—came very gradually. As soon as I could, I bought a

slipcover for the couch and stitched it on very carefully so it

would look upholstered. It took me days to sew it by hand.

Finally, the house began to look like me.

I looked around ICU again. The yellow wall, the clock, the

light panels, the white acoustical ceiling tiles with the little holes.

I wondered whether Goodwill would take the whole room!

BED NUMBER TEN 181

Shallow though it was, my breathing never stopped that night. I

could make it without the respirator! I could sleep and still

breathe. Now I was ready to get out of intensive care and into a

real hospital room. This was the main reason I made myself give

up the respirator.

The next evening, Bill and I were still sharing our pleasure at

my new forward step when Dr. Birmingham came up to my bed.

"Well, you're off the machine," he said. "Now you need to

start eating."

Before I could react to what he was saying, he reached up to

my nose, grabbed hold of the NG tube, and yanked it out

brutally. A silent scream of pain and fear ripped through me. My

eyes flew to Bill, pleading for help, but he could not move. He

stood there stunned, anger and disbelief swirling across his face.

"Now you'll have to eat," Birmingham said smugly, as he

turned and left.

Bill clasped my hand, perhaps as much from his own need as

from mine. Here I was, still barely able to swallow melted ice

chips—and yesterday, my first drops of iced tea—and Dr. Bir-

mingham seemed to think that his fiat alone could make me do

something I was unable to do. He still seemed to know nothing

about this disease.

Bill tried to comfort me, but I could see his anxiety. I'd been

complaining about too much dietary supplement for my stom-

ach to handle. Now there would be nothing—and here I was

still at eighty-some pounds.

I was startled to hear Bill's words. "I just wish that some day I

could do to him what he did to you." His eyes were glistening

with angry tears. "Don't worry, Sue. We'll get this thing

straightened out, I promise." I know, Bill. I know you will.

When Donna came on, she looked at me, incredulous. I was

thankful it was she—someone who would understand. "Sue,

your tube's gone! What am I going to do ? I have all these meds to

get down you." Dr. Birmingham hadn't thought about that. All

my medications and vitamins had to be ground up and mixed

with fruit juice to get them down the tube.

The next morning, drop by drop, Gwenn was able to get half a

182 BED NUMBER TEN

glass of juice and two tiny spoonfuls of cooked cereal down my

throat. But I gagged when the mashed pills were added to the

juice. By noon, another doctor was recruited to replace the NG

tube. I tried to block out the faces leaning over me, the voices,

and the torturous scraping of the tube up through my nose, back

down my throat, and into my stomach. When Dr. Lohmann

read the chart, his only reaction was to shake his head slowly

and order my dietary intake doubled. Oh, doctor, please don't. I

needed the feedings, but I was already getting more than my

stomach could tolerate. He departed, leaving the radio turned

off, as always.

One bright spot of the day: the respirator was removed from

my cubicle.

Respiratory therapists constantly checked my blood gases to see

whether I was getting sufficient oxygen. Now they added tests of

vital capacity, the volume of air I was breathing. My volume was

weak and my breathing shallow. "Sue, breathe deeper," became

the new operative words. I'd always heard that lecturers and

opera stars learned to breathe deeply from the diaphragm to

sustain good, rich tone, but I had never learned the technique. I

always spoke from high in my chest. Now I was relearning to

breathe and having to remind myself with each breath to draw in

more deeply.

Sitting in the old, wooden wheelchair was becoming more

difficult—the pain of the rigid, unyielding seat seemed to be

worsening. And now, for some reason, it was harder to breathe

while sitting up. No one listened to or believed my complaints.

And I was still anxious about being left alone where I could not

trigger the alarm clock to call for help. In the midst of all this

staff, I was alone and ignored. Perspiration would pour off me,

stimulated by my anxiety over the pain, the heat of the unit, and

my general weakness. Was it only my imagination, or was I

getting weaker?

I complained to Bill. Left sitting two hours. Hurt. No alarm.

Dripping wet. No one wiped perspiration. Ignored. Bill

faithfully wrote the words and nodded with understanding. Did

he understand?

BED NUMBER TEN 183

"March 13: Talk about negative attitude."

-from Bill's diary

I begged Bill to get me out of ICU.

"Patience, Sue. You have to have patience."

No more patience. I'd been patient for nearly four months. I

was ready now. After all, I was off the respirator.

"Sue, they have to make sure you're breathing well enough to

stay off the respirator."

Others get out day after off machine. I saw them all around

me—off one day, out the next.

"But they weren't on as long as you." Always the voice of

reason. "Also, you're still paralyzed and have your trach. The

floor nurses are not trained to deal with you—nor do they have

the time to take care of you and all the other patients on the

floor."

Has to be way. Must get out.

"The only way to do it is with private-duty nurses. Once they

give the go-ahead to move you, we're going to have to get this all

lined up. It will all take time. . . ."

I could tell there was more. Finally, it came. "Sue, I don't

know if the insurance company will approve private nurses.

And if they don't, well, you know we just can't afford.. . ." His

voice broke, and I saw the tears. But I could not deal with that

"if."

Fatigue became my enemy. I was tired, terribly exhausted all

the time. I never had a complete night's sleep, and even when I

rested reasonably during the night, it was never quite enough.

Physical therapy was increasing, as were respiratory treatments

for my lungs, along with the long periods in the chair. All of this

was more than I had the strength to bear. There was no relief.

"March 15: Pneumonia. Antibiotics must be increased."

—from Bill's diary

I knew I had a problem. Suddenly, every time I was suctioned,

I felt the need for "bagging"—extra pushes of air from the

184 BED NUMBER TEN

Ambu-bag. Peter, particularly, seemed bothered by this, and his

doubt bothered me. He was afraid I would become dependent

on the bag. I felt the fullness in my lungs, but I didn't have

sufficient lung power to cough it up. My breathing was still

shallow.

Dr. Lohmann was ordering chest X rays—and so was Dr.

Birmingham. The technicians would roll in the X-ray machine,

pull away the pillows, and slide the hard, cold plate under my

back. Click, click—that was it. And off they'd go, leaving me in

a rumpled heap. Perhaps an hour later, another technician

would return with the other doctor's orders. Again the cold

X-ray plate and the click, click. Doesn't anybody look at my

chart and see that I have just had an X ray? The technicians had

their aprons to shield them, but what about me? What was

going to protect me from all these X rays?

I sank into despair when the respirator was rolled back into my

cubicle. I had pneumonia, and they said it was likely to cause

breathing problems. I had to go back on the machine. My tears

were uncontrollable. I had come so close to escaping from ICU,

and I was getting better. Now I was hooked to the machine

again. Next came the IV in my arm. "Just a little touch of staph,"

I was told. "Nothing to worry about."

Bill struggled to look brave and positive, but with each visit,

the tears in his eyes obliterated words. I could scarcely bear to

look at him and see his sadness.

I hit bottom. Would there ever be an end to this? Would I ever

get out of this mechanical horror? Was the "room upstairs" just

a myth? Now I succumbed to the fought-off words of Bill's

warning. Perhaps the insurance company would not cover pri-

vate nursing. Was my passionate desire to leave this place based

on fantasy alone? Despair and depression were smothering me.

Tears poured out again when San Williams stood beside my

bed. Perhaps realizing there were no words capable of restoring

my hope, he reached immediately for my book of psalms.

Quietly, he began . . .

BED NUMBER TEN 185

The Lord is my shepherd; I shall not want. He maketh me to

lie down in green pastures: he leadeth me beside the still

waters. He restoreth my soul: he leadeth me in the paths of

righteousness for his name's sake. Yea, though I walk through

the valley of the shadow of death, I will fear no evil: for thou

art with me; thy rod and thy staff they comfort me. Thou

preparest a table before me in the presence of mine enemies:

thou anointest my head with oil; my cup runneth over. Surely

goodness and mercy shall follow me all the days of my life:

and I will dwell in the house of the Lord for ever.

The tears were drying on my cheeks now. San smiled softly

and held my hand. The words echoed back through my

mind over and over—"He maketh me to lie down in green

pastures. . . ."

I felt a new serenity; fear and despair were bathed away with

my tears. Now I was experiencing an inpouring of confidence

that all of this would pass. San left as quietly as he arrived. "He

leadeth me beside the still waters."

Katherine had more disappointing news at school, and that—

like all other bad news—gave me something diverting to be

concerned about. Her close friend, Kelly, was planning to leave

school and move with her family to the Carolinas. Katherine

was very disappointed. She and Kelly had a special friendship

and planned to room together next year. By this time of the year,

others had already settled on their roommates for next year. I

wanted to talk with Katherine, to reassure her, and to give her

some ideas about next year's living arrangements. But here I was

again, helpless when my daughter needed me.

Then Linda came in to report on the ski trip she hosted for the

girls in Colorado. "Katherine just took off on those skis," Linda

said. "It was as if she'd been born on skis." Katherine never

cared about her phys ed classes—an inclination she obviously

inherited from me—so I'd been especially nervous about her

going on the slopes the first time.

186 BED NUMBER TEN

"Of the beginners," Linda said, "she did better than anyone.

She was wonderful." She held up pictures of the girls for me to

see. How happy Katherine looked with all of her friends!

This was just the medicine I needed, and surely Linda knew it.

The photographs were permanently imprinted in my mind.

Now, if Katherine can just handle this loss of Kelly.... All right,

Sue Baier, I lectured myself, if Katherine can handle skiing, she

can handle anything else, including finding a new roommate.

"March 19: Birmingham orders IV out."

—from Bill's diary

Dr. Lohmann stood looking at my arm and at the chart.

"Where's her IV?" he asked the nurse.

She seemed to hedge a little. "I believe it was removed last

night." Dr. Lohmann's usually expressionless face tensed visibly

as he scanned my chart. "We'll have to check on this."

Here we go again. Why are these men fighting their wars

across my bed? We already had duplicate X rays and blood

work, plus the routine blood-gas tests. Most of these procedures

started at five in the morning. The battle of clashing egos seemed

to rage on. I tried to explain to Bill the conflict over the IV.

"I know." He let out a long sigh. "I talked to Dr. Lohmann. He

says the pneumonia is eighty percent gone, but you still need the

antibiotics. He said he's going to inquire about the IV." I saw my

own agonized frustration in Bill's expression. "Don't worry,

Sue. I'll get this thing straightened out." How, Bill? There is no

way to "straighten out" this conflict. But telling that to Bill was

pointless. He knew it all too well.

The next day the IV was reinserted. I knew it was necessary,

but I could hardly bear it—one more symbol of setback. When

Bill came in, his eyes were fixed on the IV, tears rolling down his

cheeks. How can you keep coming here, Bill? This is just too

much of a burden for you to carry. And why do I lay more on

you?

No longer could I stifle the depression. I was going backward.

Nothing more was being said about my moving upstairs. I didn't

BED NUMBER TEN 187

know what was going on and no one else seemed to know what

was happening. I was being weaned a little each day from the

respirator, but it was not going well.

"Hang on, Sue. This can't last much longer." Bill tried to

encourage me, but could I believe that? I had to. It was all I had

to cling to. Oh, Bill, how I love you. Without you. ... I could

not even think what would happen without Bill.

Suddenly, I remembered—Lissy was graduating from high

school. Last year she and Bess had given Katherine a graduation

party. Now it was time to do something for Lissy. I latched onto

this distraction. Finally I had something to work on in these days

of helplessness. Graduation was little more than a month away.

We had to start planning on this.

Need to give Lissy luncheon for graduation.

Bill's eyes blinked, stared momentarily, and then rolled up-

ward incredulously. I was not going to waste time and energy

spelling an argument with him. I had it all planned.

Ask Liz make lunch reservations. Liz would know a good

place to stage an appropriate luncheon.

Tell Elizabeth check Lissy on guest list. I could work with

Elizabeth on getting invitations out. This little assignment for

Bill was just to let him know I was back in gear again! He shook

his head slowly in disbelief, and then the glimmer that began in

his eyes grew into a full smile. What a beautiful sight! The past

few days had left no room for smiles. Yes, Bill Baier, we'll make

it now.

"March 21: Sue asked how I was!"

—from Bill's diary

Kay came back! Her new job had not been what she had hoped. I

was ecstatic to see her.

"Come here, Phil," Kay called. "Help me turn Sue." They

laughed and chatted as they rolled me over. When my arm

flopped down, the IV tube pulled out. I knew it was no problem,

188 BED NUMBER TEN

because I'd heard the nurses and doctors earlier that day say that

the IV was due to come out. They'd decided to leave it in until a

series of medications ran out—just as a precaution.

When Kay and Phil saw the loose IV, they were upset. "We

have to get it back in," Kay said.

No, no, no. But they wouldn't look at me. They were too

preoccupied with this problem.

"It's going to be rough getting it back in," Phil said. "I've

never worked with her, but they say she hasn't any veins left."

"Well, we've got to do something. There'll be trouble tomor-

row if this thing isn't back in."

No, no! I pleaded. Look at the chart. You'll see that it doesn't

need to be in any longer. But Kay saw only my protestations, not

my reasons.

"I'm sorry, Sue. It has to go back in."

Phil grabbed the needle and began searching for a vein.

"There. That'll do it."

No! Wrong! I could see and feel that it was in wrong. By now I

knew how a properly placed IV felt.

But they were both relieved to have it reinserted. Kay didn't

look at me. She just placed the pillows carefully at my back,

patted me on the hip, and said, "You're all right now, Sue. Sleep

well."

By morning my arm ballooned. The IV solution had seeped

under the skin. My morning nurse removed the IV. Dr.

Lohmann ordered that the remainder of my medications be

given by injection.

Finally I was back in the wheelchair. I tried to make myself see

this as a step forward, but optimistic self-sermons gave way to

self-pity, to reality. Desolately I watched as the other patients

turned on their call lights and nurses rushed to their bedsides.

But no one asked if I needed anything. I had become fused into

the inanimateness of that huge wooden chair that held me.

Bill pushed the doctors for answers, trying to find someone

with a plan we could rely on and attempting to remedy what he

could now see was thoughtless care. As he pushed, they—

whoever they were; he didn't tell me that—suggested it might be

BED NUMBER TEN 189

time for a change. Perhaps I would be happier at one of the

specialty rehabilitation hospitals.

No. No changes. All new staff. Can't do it.

In spite of all the problems, there were some people here I

knew I could trust. Even the ups and downs here felt safer than

the idea of an all-new environment. Moving was impossible.

Gary assured us his department could do anything for me that

any other facility could do. All I wanted was a room upstairs—

and a chance to be a normal patient.

I felt greasy and unkempt, especially when I sat in the wheelchair

and other patients' visitors walked past me. My hair hadn't been

shampooed for days—there had been too many other things to

worry about. Now Dr. Birmingham walked toward my bed. As I

fought off my instinctive anxiety, he walked up to me and

studied me. What is he going to do now?

"You need to fix yourself up. You remind me of my dogs when

they come in out of the rain." I was devastated, even breathless

for a moment. I'd heard the staff grumble about his abruptness,

his temper that lashed out at whoever was convenient, and his

tactlessness. In fact, I'd watched people disappear when he

walked into the unit. I had been the victim of his rough actions,

but this was the first time he had ever spoken to me like this.

Surely my eyes flashed the mixture of anger and hurt I felt. Fix

myself up? What do you think I can do about this?

Still unbelieving when Bill arrived, I spelled out the insult to

him. Always the conciliator, Bill tried to placate me. "Sue, I'm

sure he just meant that it would make you feel better if you

looked nicer."

His dogs are sheepdogs! Bill didn't laugh, but I knew he

wanted to. "Sue, he's concerned about you. He didn't mean

that. Don't let him upset you." The subject was changed quickly.

But I could not repress the thought of how dreadful I must

look. I'd always had my hair cut every three or four weeks.

Because my hair is very fine and thin, I've always kept it short

and washed it every day. Now my long, greasy hair troubled

Mother—I could tell by her gasp of excitement every time I had

190 BED NUMBER TEN

a fresh shampoo. But to have my appearance flaunted so crudely

to me was unbelievably cruel.

"March 24: Get Lohmann and Birmingham together to stop

duplicate X rays and blood tests,"

—from Bill's diary

The battle waged on—and the duplications. My primary veins

had virtually collapsed, and there was only one person in the

hospital who could find the one remaining usable vein in my

right arm. When she was not on duty or otherwise available, the

rest of the technicians simply butchered me.

Bill finally had a long talk with Dr. Birmingham and dis-

covered his role in my case! Since the director of respiratory

therapy was not a physician, Dr. Birmingham was on call for

that department in ICU. He had been called in for consultation

when I was placed on the respirator and had stayed on the case.

Now Bill received a new promise from Dr. Birmingham: in

one month I would be put into intermediate care. I'd be out of

ICU and upstairs in a regular room. Could I believe that? Bill

seemed to. This was different from all of Dr. Birmingham's

other predictions. A month seemed so far away, yet I knew I

could handle that, a definite date. If only I could be absolutely

certain.

But his promise was all there was. I had no choice but to

accept the thirty-day countdown.

Elizabeth announced her decision to run for Student Council

office. This year had gone well for her. She was inducted into the

National Honor Society and she and a friend were designated

joint delegates to Girls' State from Lee High School. Also, she

would be a section editor for the school newspaper next year.

The election would be a good experience. But she hadn't decided

which office to shoot for.

Her friends were encouraging her to run for president. "I

couldn't get elected president, Mother," she said. I wasn't so

sure, but Elizabeth was a pragmatist.

"Vice president. Perhaps I'd have a better chance at that," she

decided. "Besides, I am involved in too many activities already

to take on the presidency."

I remembered well the excitement of election time at Lee.

Posters, slogans, fliers, various gimmicks. It was always a full-

blown campaign. I wished I could be there again at my volun-

teer's desk, absorbing it all.

Elizabeth showed me her posters, discussed her strategy, and

checked on what she should wear for her campaign speeches.

We decided on an appropriate dress. When the time came, Bess

and her tape recorder captured it all for me. Elizabeth talked

about what she would do during her term. She concluded with,

"And I'll show you who I'll be most concerned about during the

coming year." With that, she lifted a Polaroid camera and

clicked a picture of her audience! Bess told me the students

reacted excitedly.

She won the office of vice president.

March was wearing to an end. Outside, spring was in full

bloom. But in Bed Number Ten, life was sad, frightening, ex-

191

192 BED NUMBER TEN

hausting, frustrating, and boring—as it had been for seventeen

weeks.

Mentally I erased the dragging days, first one, then the next,

and a third—days that would take me closer to the promised

move upstairs. Could I believe Dr. Birmingham this time? It had

been three weeks since I was first taken off the respirator, when

my hopes of getting away from ICU had been so high—three

long, heartbreaking weeks. Now I desperately needed some

small hope to cling to. A month was at least measurable. So I

counted. And I shared my misery with Bill, who listened pa-

tiently day after day.

Morale low. Need TLC.

Again Bill bore the brunt. He wrote my words, put away his

diary, and caressed my hand. The burden was all the worse for

him because finally he understood the personnel conflicts that

surrounded me, yet we both knew he was powerless to change

anything.

On March 30, President Ronald Reagan was shot. Ginnie ran to

my wheelchair. "Sue, the president's been shot. Let's put on your

television." All the staff rushed in to watch.

As I stared at the screen, waiting for each news bulletin, I was

immersed in the horror. When his surgery was finished, a hospi-

tal spokesperson announced that the president was in intensive

care. I looked around the unit. It was not right that he should be

reduced to this. I prayed for him.

During his evening visit, Bill and I sat silently, absorbed in the

tiny screen. The word was that the president would recover

completely, but Press Secretary Jim Brady was critical. A bullet

had torn through his brain. There was some question whether

he would survive. On into the evening I watched. Experts were

interviewed. The president would have no long-lasting effects,

they said, but Jim Brady was likely to be paralyzed the rest of his

life—if he made it at all. Photographers caught glimpses of

family and friends arriving at the hospital. I prayed for them all.

Theirs was to be a long vigil—like the many long nights and

days for my family. Such insanity! So much suffering. Hang in

there, Jim Brady. We both have battles to win.

BED NUMBER TEN 193

Eating became increasingly important to me as I drew closer to

getting real food. The setback had postponed that pleasure,

too—but not my new craving for food. For seventeen weeks I'd

subsisted on IVs and the thick liquid diet forced down my NG

tube. I wasn't really bothered by talk of recipes for the girls'

party or the family's meals, or those frequently shared by staff in

conversation, but it was hard to watch the nurses eating in the

station. I could see them every shift, every day. Sometimes

they'd phone out and order sandwiches from a deli—huge,

plump sandwiches. When they felt talkative, they'd lean over

the bed while eating all manner of food. And I'd want just a

taste.

One day, Bess asked Bruce, "Isn't that terribly difficult for

Sue, having to watch you eat?"

He just shrugged. "Oh, she's used to that."

I wasn't. It had bothered me from the beginning, but it was

much worse now that I was in limbo, waiting for my recovery to

get back on track. I watched with envy as the other patients

received their trays and ate real food.

Often some asked, "Sue, what do you want to eat first?" I'd

spell lobster or shrimp—and then lie there thinking about the

tastes of different foods. I'm not a big eater, but now I was

obsessed. I pictured myself in my own kitchen, picking out a

recipe, gathering the ingredients, preparing a meal, and then

sitting down with Bill to eat it. Or with the whole family. Or

even with friends at a dinner party.

When Dr. Lohmann finally stopped the antibiotics, he had the

dietitian stop in to see me. I would start with a liquid diet, Mrs.

Reeve told me. No lobster or shrimp, but I would have the taste

of food!

When a tray arrived for-me and was put on my table, I had no

idea what liquids might be under those warming covers. I waited

and signaled, but no one came to feed me. All around me were

patients eating or being fed their dinners. I wanted my dinner,

too. When it was time to collect the trays, mine was hauled away

unceremoniously—untouched. Trays came and went for days.

A nurse would even bring the tube feeding while my liquid meal

sat on my table. Then it was sent back with a wave as the feeding

194 BED NUMBER TEN

was forced down my tube. They apparently didn't have time for

both. I kept hoping Dr. Lohmann would ask about my food

intake, but he didn't.

"April 1: Birmingham says Sue had a good night."

—from Bill's diary

I was astonished when Bill expressed pleasure at the report that

I'd finally had a good night's sleep.

No! New nurse. Suppository didn't work for sleep.

How could Dr. Birmingham report that when, in fact, I'd had

a terrible night and barely any sleep? Is that what was on my

chart? Once again I saw the look of doubt in Bill's eyes. Who

was he to believe? Did he feel, perhaps, that my depression was

turning to paranoia?

Was I paranoid to want to be treated as human? To be asked

how I felt? Did you sleep well, Sue? Are you comfortable? What

would you like? We're sorry you must endure this rotten exis-

tence. There were so many little things, constantly, one after the

other—indignities that led to my desperation.

Once again, the hours in the chair increased. Two and a half

hours of uninterrupted agony. When a healthy person sits, there

is a continual shifting of weight, movement from one side to the

other, crossing of legs, little things to ensure comfort. But there

was no way to shift and alleviate my torture. I thought about

people who spent their lives in wheelchairs. How do they endure

the discomfort? I tried to think about others, but the pain of my

hips and tailbone was too acute to allow distraction.

I also tried to ignore the fact that I'd begun coughing again.

Bill could not ignore it, and we both cried our fears silently. If

only I could get everything coughed up, perhaps it would all go

away.

"April 2: Feeling of dread. Birmingham says more time in chair

in ICU."

—from Bill's diary

BED NUMBER TEN 195

Elizabeth's seventeenth birthday was April 5, and I was de-

spondent at not being able to do anything for the occasion. Bill

and Mother brought her to see me that Sunday, before taking

her out for lunch. She actually seemed older. She had had so

much responsibility all winter, being such a help to her daddy.

I wanted the two of us to make her favorite birthday cake

again, a castle cake with a drawbridge made of chocolate

squares and turrets made with ice-cream cones. And I wanted to

hold her in my arms and give her a happy birthday wish.

Instead, she was hugging me. "I love you, Mother." I couldn't

even tell her how much I appreciated all she was doing. I fought

back the tears as I watched her leave. She wasn't my little girl

any more. She had grown up too fast. Where had the years gone?

After a week or so, the staff began to notice my dinner trays.

There was no time for them to feed me during the day, but

evenings were less hectic, so some nurses tried to help me with

the tray offerings. Bland as they were, they had some taste. Still,

most of my trays were being sent back to the kitchen untouched.

Today, however, Bill brought me the first ripe strawberry from

our small patch. He proudly carried his little treasure and

patiently fed me minuscule shreds of the delicious, juicy berry.

Now tonight, here was Craig. "You're going to have dinner

tonight, Sue," he said. It was extraordinary to hear Craig say

anything. He was always silent and quite mechanical about his

procedures. Now he was going to feed me a meal? He raised the

bed a little, put a towel across me, and patted it in place. Next he

brought in several huge syringes, V/i inches in diameter. He

attached a small piece of plastic tubing to each of the syringes

where the needle was supposed to be. Craig lifted the covers

from the dishes, and we both studied the tray. I had graduated to

a soft diet.

"Well, let's see what we have here," he said, picking up the

menu. "Ah! Pork, mashed potatoes, and apple sauce." It

sounded wonderful to me. "Well, let's have at it."

Everything had the consistency of baby food, but the colors

were right—and it was food! He drew small portions of my

feast into the syringes, one at a time, and dropped dabs of each

196 BED NUMBER TEN

onto the back of my tongue, spacing the foods properly with

small amounts of iced tea. I was tasting food! Trying to get

anything from a fork or spoon was impossible—none of my

cheek or lip muscles were working yet, and my tongue barely

moved—but this ingenious technique worked, and I was

thrilled.

"I often feed my little nieces and nephews," he told me. "It's

«^eat fun." And he now seemed to enjoy helping me. Through-

out the rest of the evening, he got most of the dinner into me.

From time to time, he'd leave to care for another patient and

then come back to continue. I loved every "bite." It was my first

real meal, and Craig taught me a technique I would teach my

new nurses for months to come.

No one had time or inclination to feed me during the next

three days. Again Mrs. Reeve came to see me. I suspected she

thought the return of my full trays meant I didn't like what the

kitchen was sending. She wondered what foods I liked. That was

easy, but what could I swallow? One thing I was sure could go

down was tomato aspic. Bill passed the word on to Mrs. Reeve

and she assured him that if I wanted it, I'd get it. The aspic was

delicious, but taste was about all I got. My swallowing was so

slow that only the tiniest morsels could slide down my throat.

No one could possibly have the time to feed me a full serving of

anything. My main sustenance would continue to be the tube

feedings, which were still stuffed down during every shift.

One afternoon, James arrived with triumphant fanfare, carry-

ing a magnificent chocolate pie. This was not just a pie—it was a

masterpiece.

"Dick made this just for you." I was overwhelmed. James and

I frequently talked and spelled about his housemate's culinary

exploits, but I never imagined something like this.

"We decided that we had to give you something you couldn't

resist, so you'd eat more," he said. "You can start on this when

Bill gets here." I laughed to myself; it would take me a month to

eat all that pie.

When Bill arrived, James made another elaborate presenta-

tion. Then he cut an enormous piece for Bill to feed me and

marched off with the rest.

BED NUMBER TEN 197

"Now listen, everybody," James announced. "We're putting

this in the refrigerator for Sue. This is her pie, so y'all keep your

hands off, understand ?" It was terrific to watch Bill laughing out

loud!

He scooped up a few tiny spoonfuls for me to eat. I savored

the taste of chocolate, but the texture made it too difficult to

swallow. I could down only a few smidgens.

Eat, please. Don't want James think I didn't like!

Bill had difficulty pretending reluctance. The rest of the piece

disappeared quickly.

One by one, the staff came by to drop hints about tasting the

gorgeous pie. Soon there was begging and pleading. I didn't

want to give the go-ahead, for fear of hurting James's feelings,

but finally he himself asked, "Sue, can they eat it?"

Yes. It needed to be eaten. All that mattered was knowing it

was mine. Nothing could dim the gratitude I felt toward James

and Dick for this thoughtful gift.

Elizabeth and I were involved in serious discussions about

Lissy's graduation party. We considered various locations for a

luncheon, or possibly a Coke party at home. Elizabeth could

handle that easily. Thoughts of luncheons, menus, and decora-

tions continued when I was alone. Party planning seemed to be

one of my most effective tranquilizers. Then one day I remem-

bered that Douglas, Liz's son, also was graduating this year. As

soon as Bill arrived, he heard the news.

Must give Douglas party. Liz did for Katherine. Our turn.

"A party for a boy ?" I was prepared for the response—and for

the look of absolute chagrin on his face.

Yes. Ask hint what he'd like. Maybe take date to dinner and

theater.

Bill dutifully wrote my words in his book, hoping he wouldn't

have to read what he'd written.

After several weeks I was totally off the respirator. Did I dare to

hope that this time it was for good? Next, if I could only get rid

of the tracheostomy tube—then I could talk again. But I mustn't

allow myself to jump ahead to that hope.

198 BED NUMBER TEN

Charles came in with a bigger-than-usual smile. "Thisis t^

Sue. Today we go to therapy. Are you ready?" Going to

therapy—going anywhere—sounded just fine.

Yes. But I immediately had second thoughts. I wanted to go,

but I remembered all too well my previous brief trip out of ICU

before my last setback. I had been in such pain from sitting in the

chair that I was virtually oblivious to what should have been an

exciting first. Gary Stiller came in while Mother was visiting me

and announced he was taking me for a ride. He and Ginnie took

Mother and me outside to a courtyard for my first breath of

fresh air. But I was in such excruciating pain that I couldn't even

think about what was happening, or enjoy the time outside. At

least today I was starting out fresh from my bed. Perhaps that

would help.

Just getting me in the chair was an ordeal—disconnecting the

sensors and handling my tubes, in addition to moving my limp

body. Charles was getting expert at that, but still I wondered

what would happen if I needed the respirator. He chatted reas-

suringly and carefully swung me into the wheelchair. I was too

excited to notice more than the first stab of pain as my bones hit

the hard seat.

After I was positioned and strapped into place, and the

catheter was hung on the wheelchair, he looked at me in mock

seriousness. "We have to do something with your hair."

He got my brush, and then a rubber band from the nurses'

station, and he began brushing my hair. His massive hands

worked the hair back and into, of all things, a ponytail!

*Tfcere. That's much better." His head cocked to one side and

he smiled in admiration of his handiwork.

I tried to imagine how I looked, picturing wisps of hair flying

out at the sides of my face. Better not to think about it, Sue. One

time, as Phil was turning me, he pulled the bedside table close.

"Sue, don't you want to see yourself in the mirror? You don't

know how much better you're looking now." He started lifting

the tabletop to expose the mirror.

No. I closed my eyes and refused to look. I knew how I

looked. I saw my image in the eyes of my visitors.

The air felt cool against my face as Charles pushed me out of

BED NUMBER TEN 199

the cubicle and past the nurses' station. Several of them called

out pleasant good-byes. Mentally I waved my response. Once

the doors sprung open, I was elated. Out in the main corridor,

people seemed to know who I was. People I recognized, and

many I didn't, called me by name.

"Well, Sue, I hope you realize what a celebrity you are here at

the hospital." I could hear the teasing in Charles's voice, but he

was right. And for these few minutes, I was enjoying it.

We pushed through a pair of double doors. JoAnn and Ginnie

were waiting with big smiles. "Welcome to PT, Sue," they both

greeted me. Then Gary came strolling casually out of his office

sporting a magnificent pair of cowboy boots. "Glad to see you

again, Sue." My increasing pain seemed dulled by the sincerity

of all their welcomes.

Charles turned the chair and we entered a bright, cheerful

room. A pair of large glass doors flanked either side of a long

desk area. Vibrant wall hangings brought life to the soft green

surroundings.

"Here we are, Sue. This is where we'll be working in just a few

days." He swung my chair slowly around the room, pointing out

various pieces of equipment. He stopped when we faced the

immense, stainless-steel tank. "And that, Sue, is the Hubbard

tank. As soon as you get rid of your trach, you'll be working

in there." Imagine! A bath. Real water to soak in. I couldn't

wait.

"But today you get by easy," Charles said as he pushed the

wheelchair toward one of the glass doors and up to a padded

workout table. "I'm just going to put you up on the table and let

you lie there and look outdoors for a while. Would you like

that?"

Yes! He really did understand the discomfort of this chair.

Gently, carefully, he lifted me onto the table and positioned

me on my back, with my face turned toward the outside court-

yard. It had to be the one where Gary had taken me. "I'll be right

here in the area, Sue, so don't worry."

I wasn't worried, not about anything. I looked out into a

plain, empty courtyard, and it was beautiful. I could see sun and

blue sky and a bush blowing in the breeze. I lay watching the

200 BED NUMBER TEN

bush, the most beautiful green I'd seen in a long time.

I couldn't control my tears as Charles pushed me back

through the doors of ICU. This was the image I remembered

from that first awful night. A nurse standing next to the station

started to smile—ready to welcome me back—but she saw my

eyes and turned away, silently sharing my desolation. Bed

Number Ten was waiting.

When he had me positioned back in bed, Charles smiled

reassuringly. "Don't worry, Sue. It won't be long now."

Please be right, Charles. I just can't bear this much longer.

Now that I would be going to the physical therapy room, I

needed underwear. One more thing for Bill to take care of—

bringing in fresh panties every day and taking them home again

to launder.

The roses were again in bloom, so every few days Bill brought

me a fresh rose—in addition to the radio and television bat-

teries, TV Guide, underwear, boxes of facial tissue . . . and

asparagus.

Bill knew how I love fresh asparagus. Our patch cost him his

annual crop of tomatoes. Every spring he would spend two or

three days preparing the soil for tomato plants. Everything had

to be just so—all the nutrients in the ground and each little

mound spaced properly. Several years ago, he'd just completed

the preparations when I came home with twelve asparagus roots

given to me by another volunteer at school.

"What are we supposed to do with these?" Bill asked.

"We could go stick them in the bed," I offered.

Exasperated, but without responding, he led me out to the

garden, where I planted one beneath each of his mounds.

The young roots, which were two years old, required another

year to take hold and then one more season before the asparagus

was edible. But finally we got our first batch, and Bill had to

admit it is the best crop we can grow. With just a little fertilizing,

it keeps coming back every year, and our patch yields enough for

us to have asparagus every other night during the season.

Now Bill had cooked the fresh, tender tops, mashed them,

BED NUMBER TEN 201

and brought them in to feed to me one morsel at a time. Such a

treat and a special touch of home—of Bill.

Getting me in and out of therapy every day became a major

procedure, making my daily schedule even tighter and more

tiring. First there was the struggle to get on my underwear. The

catheter bag had to be emptied and then the bag was slipped

through one leg opening. Next my feet went through the open-

ings and the garment was shimmied up my limp body and into

place. Since I was off the respirator, I needed a breathing treat-

ment before I could leave with Charles—one more schedule

conflict that caused tension as, watching us falling behind, I

anticipated friction.

As soon as Charles brought me back to ICU, I was transferred

to the bed and the oxygen was reconnected to my trach. Then

the underwear was removed, with the original tedious proce-

dure reversed.

That's when I became aware of an agency nurse named

Elaine, a young woman with reddish-blond hair and glasses.

Her eyes showed she cared. She saw when something needed to

be done and often stopped by to do little things for me or talk to

me, even when I wasn't her patient.

If Elaine was on duty, when Charles brought me back from

PT, she'd scoot over to my bedside and take care of the under-

wear-removal chore. I wondered if she might be available for

private-duty nursing when—and if—I ever got upstairs! I gave

her name to Bill.

"April 9: Dr. Lohmann says Sue can go upstairs Monday."

—from Bill's diary

I couldn't believe it when Bill told me! In four days, I'd be out of

ICU. This was almost two weeks earlier than Dr. Birmingham

had predicted. I didn't mind the error. I was ready to leave.

Dr. Lohmann told Bill I must have round-the-clock private-

duty nurses.

202 BED NUMBER TEN

Talk to James and Elaine and get names of good people. I felt

they both understood me and would be able to suggest nurses

who could communicate with me.

Bill's face did not reflect my excitement. He was concerned

about something. I waited.

"Sue, don't forget that the insurance company might not pay

for private nurses. If that happens, you can't get out of ICU until

you can move again. That's it."

They have to pay, I demanded silently. They just have to pay,

and I must make it happen. Since my father had been in the

insurance business, I knew anything like this took letters from

doctors to explain the situation.

Get Lohmann or Birmingham to write letter saying I cannot

talk or move.

Bill nodded his agreement, but I knew he would, as always,

count on nothing until it happened.

"April 10: Another IV in for another infection. Lohmann says

just for a few days. Will look at the X ray on Monday. Back in

chair instead of PT. Tiredness. Setback!"

—from Bill's diary

Charles's expression, when he saw the IV back in my arm,

revealed his feelings. We'd been making such good progress in

therapy, but now it was halted. And the IV was set in such a

position that it restricted arm motion.

But Charles was determined to keep some motion going. He

knew—we both knew—that any interruption in the therapy

would cause stiffness and possible swelling in the arm and hand.

As he pivoted the arm carefully in a broad circle, the needle fell

out of my hand.

I could see how he felt. His shoulders slumped as he smiled

sadly. "Oh, dear. Look what we've done."

Charles received strong warnings from the nurses not to move

my arm again. He suggested that they use a detachable heparin

lock so he could disconnect the IV tube and continue my range

BED NUMBER TEN 203

of motion, but no one would listen.

Dr. Lohmann ordered the IV removed several days later. Once

again physical therapy was resumed in full force. And again I

was exhausted all the time. Which was worse—the pain of the

chair or the total fatigue of PT? At least PT was activity, and it

was moving me closer to recovery.

For so many months I'd tried to find ways to reach some level of

communication with every member of the staff. I hated to give

up on anyone.

Gary came in occasionally to see me in bed or in therapy. He'd

always talk to me but never spell with me. That shut me out,

forcing my communication to filter through Bill or someone

else. There were so many questions to ask of this man who had

such authority over my life. After all, Gary had declared himself

the one in charge of my case—and I now believed he was.

One day he and JoAnn were together in my cubicle. I decided

to try a lateral attack and spelled to the nurse: Ask Gary to spell

with me. When she conveyed my message, he got a funny little

twinkle in his eye and said, "In a few days, Sue." Then he walked

off.

After a few more visits and still he hadn't offered to spell, I

began spelling to anyone who was with him—Ginnie, Charles,

Dick, whoever . . . Gary spell!

He'd respond, "Oh, I'm running behind," or "I have a meet-

ing today. We'll do it next time."

It got to the point that every time he came near me, I spelled

with whoever was there. The letters would start: S ... p . . .

He'd quickly cut in, "Not today, Sue." He always put me off

with a sarcastic little smile, and his unwillingness to communi-

cate bothered me. I couldn't understand it. I felt a connection

with him beyond his position in PT. After all, it was Bess who

introduced us. And I'd learned he was active in a Bible study

group with people I knew, a group that was adopting me in their

prayers every week. Yet when I needed to talk to him, he

refused. I was troubled by that. Was this his little idiosyncrasy?

Or had this become a challenge of wills for both of us?

204 BED NUMBER TEN

The possibility of a breakthrough with Bruce was another chal-

lenge. There had to be a way to reach him.

I'd listened to staff talking to Bruce. He was from New York

and he liked deli-style foods. One night he was at my bedside,

chomping on a corned beef sandwich while James suctioned me.

This was my chance to "say" something to Bruce, since James

would take time to spell with me. Bless his heart, he probably

did more spelling than any other staff member.

Tell Bruce Bill also from New York area.

Bruce stopped eating for a moment. "Oh, really?" He re-

sumed eating, but at least he looked at me.

Bill also loves corned beef.

James repeated the message and this time Bruce put down the

sandwich. Could he actually be self-conscious about his eating?

He couldn't imagine how enticing that corned beef sandwich

looked to me!

Thanks to James, this was almost a conversation with Bruce.

The next night he talked to me while he worked with my tube

feeding. A few nights later, he told me he was about to have nose

surgery to correct a breathing problem.

"I'm really concerned. I've never been sick before. I've never

hurt. The thought of it scares me a little."

Yes, I thought, and that's probably why you can't seem to

relate to me. I wished him well, but I hoped this might help him

understand nursing a little better.

When Bruce returned after the surgery, his nose was heavily

bandaged. He let it be known to everyone that he was uncom-

fortable, and I was fascinated by his reaction to the discomfort.

He was not identifying with his patients' pain, understanding

how we were feeling—he was just preoccupied with his own

pain.

He never spelled with me, though several times I had someone

else spell a message to him. There were times when I thought I

saw a change in him, but then. . . .

During my last days in ICU, something seemed to obsess

Bruce again. When a patient is ready to have a catheter removed

after long-term use, the tube is clamped periodically for short

BED NUMBER TEN 205

intervals to let pressure build up in the bladder and restimulate

the muscles. But I wasn't ready to be taken off the catheter. No

doctor had mentioned it. Yet that didn't matter. Suddenly, for

no reason, and without orders, Bruce began coming to my bed,

pulling back the covers, and clamping off my tube. Just as he had

told me that first night in ICU, "Get used to this," now he was

saying, "I'm going to do this so you'll get used to it and know

how it's going to feel when they have to do it to you."

This went on for at least two weeks, and he was the only

person who ever did it. Because there were no muscles yet to

support my bladder, I felt considerable discomfort each time he

did it. But even worse was the bewilderment and the anger.

Why, Bruce, why?

So much for communication with some people.

"April 10: Depressed. Both of us. Muenkel guesses six months

more with home visits. Recommends transfer to rehabilitation

facility."

—from Bill's diary

Monday came and went. The IV dripped on, and I remained in

ICU. A heaviness set in again and Bill and I sank deeper into our

despair. He went about the motions of getting in touch with

Elaine and a few other potential private-duty nurses, but we

were afraid to hope.

Charles tried to prepare me for the eventual move. He wanted

me to be realistic about my expectations.

"Sue, as anxious as you are to get upstairs, you have to

remember that the floor nurses are not going to be able to relate

to you. If you get really good private nurses, you'll be fine, but

the chances of their all being good are very remote. And when

you're alone with someone who is not an intensive care nurse,

it's going to be you and that person against the world. It will be

different. No monitors, no backup. This is a big step."

He was right, and I appreciated his concern for me, but

206 BED NUMBER TEN

nothing he said could dampen my burning desire to get out of

ICU and into a real room.

Dr. Lohmann finally wrote the much-awaited letter to the

insurance company. He brought it in during his regular noon

visit—and he actually spoke to me! "Here's the letter for Bill. I'll

put it in the drawer for him."

"April 16: Took letter to insurance company. Approved private

nurses!

—from Bill's diary

Bill, along with Mrs. Farrell, the director of nursing, Gary, and

Dr. Lohmann, had a long discussion over whether I needed a

private room or a double. The round-the-clock nursing staff and

all the equipment I required would make it very crowded with

another patient in the room. But this decision, Bill was in-

formed, was out of our hands. The three of them would decide

what was necessary.

Late in the afternoon, word came. Tomorrow, April 17, I

would move upstairs! We were both afraid to ask any further

questions. Another mild infection had developed, but I was

assured it wouldn't stall the move. A heparin lock was installed

in my wrist to handle the antibiotics.

Dear God, please don't let me be disappointed again! Please

don't let anything go wrong now—when I'm so close. Only God

could have heard my silent prayer. And the next day my prayer

was answered.

April 17. Good Friday. This year the Friday before Easter would

indeed be good for me. It was Moving Day!

The hospital administration decided that my belongings

would be moved during my afternoon PT, and then I would go

straight up to my new room. We had no idea who I'd have for

nurses. Mrs. Farrell recommended that we employ the agency

that the hospital used, and the agency assured Bill that someone

would be there and that my care would be well covered at all

times.

BED NUMBER TEN 207

When Bill arrived after lunch, he and Carol, my ICU nurse

that shift, began taking down the cards from my curtain. It was

happening! There was much discussion about which cards

should go upstairs with me and which Bill would take home.

The Valentines could go, we decided, and Easter cards, which

were already pouring in, should stay.

In spite of all the horrid months in ICU, there were regrets and

second thoughts as I looked around the unit for the last time. A

cleaning woman who was mopping the floor across the unit

wrung out her mop, looked over at me, and waved. Just yester-

day as she worked in my area, she repeated what she often told

me: "I'm glad to see you are getting better. I've been praying for

you." She and the other cleaning staff had become my friends.

Several of them always reached out and patted my hand or the

side of the bed when they came into my cubicle. I mentally

waved back to the woman with the mop.

Truly, many caring people had done so much for me, and I

was getting out of there without bedsores. Certainly my general

care had been satisfactory—lack of communication had been

the overwhelming problem. Whatever lay ahead, things had to

be better with private nurses. For a fleeting moment I thought of

being alone with an Aurilla for eight hours. I pushed aside the

thought. That just can't happen.

I was more than ready when Charles came to take me to

therapy. As he rolled me out the door this last time, my depar-

ture was quite unheralded. No one even noticed.

COMING

BACK

"This is it, Sue. Room 219." As Charles turns the chair to face me

into the room, my room, I see Mother and Bill waiting for me,

smiling. Quickly I scan the room, and there is only one bed! All

the rooms by the nurses' station were supposed to be doubles,

but to my left, where the second bed should be, is a big red

couch. Across from it stands a desk. Opposite the bed, double

closet doors are decorated with my cards and pictures.

"Ho, ho!" Charles says. "What do we have here?" He walks

over and pats the couch and then checks out the desk. I stare at

Bill in happy amazement.

"I don't know, Sue," he says, shrugging and smiling broadly.

"Looks like some little elves have been at work. All I know is this

is a semiprivate room, just like the insurance company ordered."

This is incredible; it's a palace!

I nearly burst with happiness as I notice the window next to

the bed. Imagine, my own window! My gaze flits in disbelief

from couch to desk and back to the window.

Majestically, Charles lifts me into the bed. I had been so

excited and elated I scarcely noticed the hardness of the wheel-

chair, but now the bed feels good. I survey my new estate with

pleasure. Mother is still standing motionless, happy tears rolling

down her cheeks. Bill—dear Bill—just beams.

The nurses in ICU wore colorfully printed uniforms, but now

a nurse in a white uniform greets me. "Hello, Sue. I'm Marjean.

I'm your nurse for this shift." She is a small, wiry, agile woman.

Totally natural. No makeup, no pretensions. I feel secure with

her the minute she touches me.

H ... e .../.../... o. . . . She catches each letter. Bill has

already taught her how to spell with me, and she understands!

Bill points to the phone next to the bed. Fantastic! A tele-

211

212 BED NUMBER TEN

phone, a link with the outside world. "How would you like to

talk to Katherine?"

Yes!

It doesn't matter that I can't talk; I want to hear her voice. Still

smiling, he dials the number. "Hello, Katherine. Guess what?

We finally have your mother in her own room. She's here and

wants to talk to you." He puts the phone to my ear.

"Hello, Mother. This is so exciting! How are you?"

Oh, I want to answer! I look up at Bill, and he takes back the

receiver.

"Just a minute, Katherine, she's going to spell."

Fine. Just fine.

"Katherine, she says she's 'fine, just fine.' "

He holds the phone back to my ear. What a wonderful treat to

hear Katherine's voice again, telling me about a lecture she's just

attended.

Bill has errands to run, so he and Mother leave together. Now

it is peacefully quiet. The clatter and voices of ICU are gone, and

I am with a kind nurse who will stay here in the room with me. I

feel no fear, only joy.

A technician arrives to draw blood. As he looks for a vein,

Marjean stops him. "You don't need to do that." Her voice is

firm and direct. "She has a heparin lock. Here, give me the

syringe." She draws the blood easily through the lock, just the

way it should be done.

I am awash in happy tears as Marjean positions me on my left

side, facing the large window, the sunlight, and the blue sky. A

billowy white cloud blankets me in peaceful sleep.

As my eyes open, I feel all smiles. This is not a dream. I am

actually here, out of ICU! The setting sun bathes the room in a

soft, warm red. Marjean is seated at the side of my bed. There is

a twinkle in her eye as she points behind me. Carefully she rolls

me over to my right side, and there is Bill, resting on the couch.

My heart embraces him.

The floor nurses come in to greet us, offering their assistance

for anything we need. During the days I'd spent at the hospital

BED NUMBER TEN 213

when Mother had been ill, I had seen instances of floor nurses

resenting private-duty people and refusing to cooperate. I am

thankful we can count on this staff to help.

"April 17: I spend night on the couch."

—from Bill's diary

Marjean has signed on to work a double shift this first day, three

to eleven and then eleven until seven tomorrow morning. Even

though she quickly adapts to my needs, Bill wants to be sure she

can handle me alone all night and can operate the alarm clock—

still my only signal when a nurse isn't looking at me. So, after

watching the evening news together—another joy, a regular

hospital color TV set—Bill settles in on the couch for the night.

For the first time in 4Yz months, there is darkness at the foot of

my bed. Only a nightlight and the streetlights from below shine

in the room, and I welcome both. After all that time bathed in

brightness, I feel apprehensive about total darkness. Marjean is

sitting nearby, ready to respond to any need. And perhaps the

sweetest thought of all is that just a few feet away, my husband

lies on the sofa in my room. Tonight, finally, my little universe is

quiet, snug, and secure.

It's a new day, a Saturday, and Bill does not have to go off to

work. He instructs the new nurse at seven. Suddenly Charles's

prediction becomes reality: not all private-duty nurses are good.

Sandy's ability to spell with me is limited, as are some of her

nursing skills—she can't, for example, suction me properly.

Now that I am out of ICU, breathing treatments will be my only

contact with respiratory therapy. James, Kay, and Peter work

primarily in ICU, where most of the respirator patients are

assigned, so these friends are not readily available to me. Suc-

tioning is now the responsibility of my nurses, and Sandy cannot

give me any relief.

This new day is such a letdown. I am grateful to be out of ICU,

214 BED NUMBER TEN

but it is scary being at the mercy of a single individual who

doesn't know how to care for me.

Get Elaine, please!

"I'm trying to reach her, Sue, but so far I haven't succeeded."

Oh, Bill, I wish I didn't have to be such a problem. It's always

something, isn't it? But we have to get nurses I can rely on.

"I'm sorry, Sue," Marjean is saying, "I thought you were told."

No, no one told me that Marjean would only work weekends. I

had been so happy to see her when she came on at three today,

especially after my frightening morning with Sandy. But now I

learn she won't be back until next Saturday.

"I go to the university full time during the week. I'm getting

my nursing degree." Her capable hands are suctioning me, then

washing my face and combing my hair. "I can work one double

shift most weekends, if that will help you." At least that is

something to look forward to—if I can just make it through all

next week.

As Bill and I watch Marjean finish her paperwork at eleven,

Trish introduces herself and listens to Bill's instructions. Very

soon we see what lies ahead: Trish seems unable to spell with me

or suction me. Nor does she seem to understand the clock, in

spite of Bill's detailed explanation. He lies down on the couch

with a sigh of resignation, ready for an up-and-down night.

This morning, Easter Sunday, Sandy returns. Bill has gone

home to shower and change clothes, and I am frightened. I feel

isolated. Easter Sunday is not quite the joyous occasion I antici-

pated.

"April 20: Lohmann says more X rays. A little worse. Fluids in

lower left lung. Needs draining. Will be difficult."

—from Bill's diary

Another holiday has passed, and the new week begins. Will it be

better? My door springs open. What a surprise it is to see

Kathleen, one of the nurses who gave me such special attention

on Christmas morning.

BED NUMBER TEN 215

Her smile is radiant as she welcomes me to the second floor.

"I'll bet you're glad to be here. And how about this room? Isn't

this something?" She breaks into another big smile.

"Do you remember seeing me on Christmas?"

Yes.

"But you probably didn't notice me the day you came in last

December."

No.

"I saw you then and have been keeping track of you ever

since." As she talks, she continues smiling and watching my eyes

for reactions. "I was just filling in down in ICU on Christmas.

We usually shut down this floor over the holidays." Her eyes

twinkle. "That's not our busy season, you know. So several of us

filled in around the hospital on Christmas Day. I drew ICU, and

I got you."

Someday, Kathleen, I'll tell you what you meant to me that

sad, lonely day.

I can now lift my elbow just a little, so engineer Bill has been

working on something new for a signal to replace the alarm

clock. When the private nurses go out for lunch or a smoke, I am

apprehensive at being left alone. The alarm clock can't be heard

out in the hall or at the nurses' station.

Finally Bill has a new creation, a very sensitive toggle switch

that attaches to the bed's guardrail near my elbow and is wired

into the hospital call button. With just a light touch of my

elbow, the light goes on in my room, outside the door, and

at the desk. The staff is impressed with Bill's wizardry.

Apparently many patients have difficulty using the conventional

call button.

Nurses say to patent call button.

Bill shakes his head slowly. "It's taking care of you, and that's

all I'm interested in." And take care of me it does. I feel much

more at ease now, even with nurses who are less than compe-

tent. If things get too bad, I know I can call the floor nurses.

Bill says he is still working on reaching Elaine, but his eva-

siveness tells me there is a complication. I am trying not to set

216 BED NUMBER TEN

my hopes too high. However, I do have a nurse I like a lot who

will take me every afternoon during the week. Yvonne is tall,

large boned, good looking, well groomed. She has the prettiest

eyes and smile. On her first day she clicked right in and spelled

immediately, and now the afternoons and evenings go

smoothly. Once again I have hope.

"I didn't want to take this job," Yvonne says. That surprises

me, because she is very good with me. "When the agency called

me to take on someone who was completely paralyzed, I said, i

can't do that.' Then they began telling me about you. And Sue,

they knew how to get to me. They put me in a spot where I

couldn't say no." I am certainly grateful that they did that to her.

"I thought I'd just come until they found somebody else." She

smiles broadly. "I guess I'm stuck now." I hope she can see the

smile in my eyes.

I don't want to open my eyes, to face this day. My lung must be

drained this morning. I was very apprehensive all night—filled

with a sickening dread—even though everyone tried to be reas-

suring. Who will be my morning nurse today? How much will

she be able to understand and communicate to the doctor for

me? When I hear the door open, I open my eyes reluctantly, and

there she is: Elaine! Tears pour in happy disbelief.

So happy. Can't believe you are here.

Her eyes fill with tears, too, but she smiles and clasps my

hand. "I can't believe it either, Sue. The agency really had to talk

to me. This is a shift I usually do not work. Yet here I am."

e, and I'm a pulmonary specialist." He has a kind

face and is speaking directly to me. That's a rarity for a doctor

around here. He shows me the bronchoscope and explains what

he will be doing.

"Now, Sue, any time it gets uncomfortable, I want you to

signal. All right?"

Yes. Anyone who asks for my response is reassuring.

"All the way through, I'm going to explain everything I'm

doing. Anything I see, I'm going to tell you." This is extraordi-

nary!

BED NUMBER TEN 217

Dr. Rockne's nurse appears and introduces herself. They are

both comforting, and I try to be calm. With these two and Elaine

here holding my hand, maybe I'll be all right. An injected

relaxant and local anesthetic help ease my fears.

"You're lucky, Sue," Dr. Rockne says as he picks up the long

tube. "Because you still have your trach, we can insert the

bronchoscope down it, rather than down your throat." So far so

good. Stay calm, Sue. It's going to be fine.

"Well, Sue, there is a bunch of fluid down there." His voice is

too serious. I don't want to hear any more. He holds the

bronchoscope up to my eyes so I can see for myself, and that

helps to distract my fears. I can actually see the mass as he

describes it to me.

"We have to draw it out, Sue."

The long needle slides into my side. It hurts, but I don't signal

him to stop. I want it to be over, and I trust Dr. Rockne. Elaine

squeezes my hand, and I keep my gaze riveted on her until I feel

the invader gone from my chest.

"It's over, Sue," Dr. Rockne says. His voice is kind. "You'll

start feeling much better now." I believe him. "We'll give you

something to let you sleep for a while." Sleep will be welcome.

But just as the grogginess sets in, Elizabeth and her friend Jane

appear at the side of my bed.

"Hi, Mrs. Baier." Jane gives me a big hug. "It's good to see you

again." She is completely unfazed by the sight of me. "I'm sure

glad you're doing so well."

Jane's mother, Mary, has been coming to visit faithfully, but I

haven't seen Jane since before Thanksgiving. And now, in spite

of how I look, dangling NG tube and all, she is acting as if

everything is perfectly normal. I have watched so many visitors

react with shock, even revulsion. How can Jane handle this with

such ease and naturalness? But I shouldn't be surprised—this is

the way she is. She and Elizabeth chatter good-naturedly. Their

easy banter, keeps me included, even as I fight sleep.

Jane has a special fondness for rainbows, and she unrolls a

large rainbow poster. While I struggle to keep my eyes focused,

she and Elizabeth happily tape it to the closet door. After we

admire the poster and their efforts to position it properly, Jane

218 BED NUMBER TEN

announces, "Well, we'd better go, Elizabeth." She gives me

another hug. "Mrs. Baier, we'll be back." Next, my hug from

Elizabeth. As the door closes behind them, I succumb to sleep.

Elaine and I didn't know each other long in ICU, so we have

much to learn about one another. As she bathes me, she begins

talking about my appearance.

"I'm going to bring tweezers. We have to pluck your eye-

brows." Terrific! "We'll have to do something about your hair.

Do you have a hair dryer?"

Yes.

"We must have Bill bring it. How about hot rollers?" I don't

believe this! I felt totally grimy during all those months with

little personal grooming, and now someone is talking about

doing the things I've always done for myself. Elaine can read in

my eyes that I am smiling all over.

Knowing that Elaine will be with me every weekday and

Yvonne will come in the afternoons, I feel warm and contented.

Overnights might be a problem yet, but then I am supposed to be

asleep. Everything is going to work out. For the moment, I can

relax.

Elaine is working on new, ingenious methods of handling my

personal care. She discovers that the suctioning machine, which

is still used regularly for my tracheostomy, will also work for

draining the water after my hair is washed. Next she goes to

work on my complexion.

"You're all broken out. What do you use on your skin? We

have to get your face cleared up." I can imagine how badly the

oils have clogged my pores.

"I'll bring some facial scrubbers tomorrow," she announces,

"and whatever else it'll take. We may have to make you break

out more before we get you cleaned up, but we are going to get

your skin back in shape."

Hooray!

Charles has always put me into the wheelchair and taken me

to therapy. Now Elaine can do this, and she stays with me

BED NUMBER TEN 219

through the morning therapy session. This is especially reassur-

ing, because I am not alone when Charles lets me rest while he

works with other patients. Each time that Elaine pushes me

down the corridor out of the therapy department, I again feel

the relief of not having to go back to ICU.

Our daily routine has developed quickly. I welcome the or-

derliness. At seven, when Elaine comes on duty, we take care of

my medications and breakfast. They still have to go down the

tube, but Elaine always tries to feed me a little off the tray, too.

Next, she scrubs my teeth thoroughly and even uses dental floss.

Then she washes my face and hands before we go to PT.

Charles continues to come into my room every morning with

his cup of coffee and cheery greeting. I can see almost imme-

diately that this annoys Elaine. She has established this room as

her turf, and he is invading it. "Now, you're coming down to PT

at ten today, right?" he asks. The question is nearly always the

same.

Yes.

"Yes, Charles," Elaine also responds, very politely. For the

first few days, she never speaks of his morning visits, though I

can sense the irritation. Finally, it comes out.

"We're going down to therapy," she grouses, "and still he

comes in here every morning!" For now, I can only spell to her

that he needs to see how I am to plan my therapy for the day.

When I can talk again, I will tell Elaine how Charles and his cup

of coffee lifted my spirits during the long months in ICU with so

little to keep me going. I smile to myself, happily knowing he

will never stop these special little visits. I don't want him to stop.

After therapy and before lunch, Elaine bathes me and washes

my hair. When she is finished, I feel clean! During my bath she

turns on the television so we can both watch "Hour Magazine."

"You've been so cooped up, Sue. You need this distraction—a

chance to see what's going on in the world." I never watched

daytime television at home, and in ICU the TV set had to be

stashed out of the way during the day. I like this exposure to

what is happening in the outside world.

220 BED NUMBER TEN

After my bath comes lunch, and that takes forever! Elaine

tries to give me as much as possible from my tray, to force the

mouth and throat muscles to work, but it is agonizingly slow.

While I am eating, Charles often stops in again to check on me.

"How are you doing, Sue?"

Fine.

"Are you going to be ready for therapy this afternoon?"

Yes.

He looks over my tray. "Hmm, what have we here? Chicken

soup. How nice. That custard looks good." I can feel Elaine

tense as soon as he walks in the room.

Yesterday he came in at the end of my bath and my hair was in

rollers. I knew it was frivolous, and the curl would fall out of my

terribly fine hair as soon as I had the strenuous workout of

afternoon therapy. But the curl does make me feel a little more

feminine for a few minutes. I need that after being dehumanized

for such a long time. I know I blushed, though, when Charles

broke into laughter. Elaine bristled. I reminded her that men

always laugh at women's beauty rituals.

Yvonne is right on time: three o'clock. Even before I see her, I

always hear her coming to meet us in therapy. Every day she

wears a taffeta petticoat that rustles when she walks. When I

hear that rustle coming down the hallway, I can relax. I know

Yvonne will be with me for the evening.

Elaine and Yvonne leave for about fifteen minutes to do

reports and charting at the nursing station near my room. After

that, I am in Yvonne's hands.

For the first few days, Charles put me back in bed right after

we returned from therapy; now he makes me stay in the wheel-

chair until he leaves the hospital for the day. Even though

Yvonne freshens me as soon as we get back to my room, I never

feel that I'm finished with therapy until I am back in my bed. I'm

so exhausted from the exertion and the discomfort of that

miserable chair that I welcome a few minutes of rest.

About five-thirty, Bill comes, and Yvonne goes to dinner. This

gives her a break, and Bill and I have a little relaxed, end-of-day

BED NUMBER TEN 221

time with each other. Our morning and noon schedules allow

only brief time together, so we cherish this special half hour.

My dinner comes now, but I am never hungry this early, since

lunch takes forever. Yvonne will warm the dinner in a micro-

wave later.

Bill always checks the tray. "Hmmm, what do you have?" The

question is purely conversational. The soft foods all look alike,

and there are few surprises. I am so limited in what I can

swallow that we always know what is coming.

Because eating is slow, my real nourishment still must go

down the tube after I am too tired to swallow anything more. I

try to stretch myself, increasing my food consumption to be-

come less dependent on the tube, so meals continue all evening

long, with short interruptions for visitors.

Yvonne keeps reminding me, "Sue, the sooner you can take

more nourishment off the tray, the sooner that tube can come

out of your nose." That is good motivation. But no one knows

how much energy it takes to eat, concentrating on every muscle

to chew and then to swallow without choking. What appears to

friends and staff as relaxed evenings are absolutely exhausting.

The two unfailing bright moments of the evening are Bill's

phone calls. First there is the early call to say, "I got home OK,"

along with perhaps news of Elizabeth's schedule for the eve-

ning—especially the name of the person who is driving if she is

going out.

Then about ten, another call comes, this one the most pre-

cious of all. Whenever Bill traveled on business over the years, I

could always count on that reassuring call every night. I cherish

it especially now after all those barren nights in ICU.

"Good night, Sue. I love you."

I whisper silently, I love you, too. These moments of my life,

at least, are returning to normal.

As parts of my body begin to move, Charles gives me exercises

to work on at night. About nine-thirty, Yvonne and I begin

these, which are finished by the time of Bill's second phone call.

Finally, Yvonne writes her report for the next nurse and gets me

ready for the night by washing my face, giving my skin an

222 BED NUMBER TEN

astringent treatment,' flushing my catheter, and brushing my

teeth and then my hair. It is our nightly ritual. As much as

possible, I try to get the weekend nurses to follow the same

procedure. I like living with an organized, orderly structure, and

this is beginning to be somewhat possible.

Except for two scheduled turns, I usually sleep through the

night.

Through these first honeymoon days in Room 219,1 am nagged

by one fear.

What will we do about no-shows?

Bill's face indicates he's been thinking about that, too. This

can be a problem with private-duty nurses. An illness, perhaps,

or a car that won't start. If someone doesn't show up for a shift,

the previous nurse still has to go home, and the floor nurses

don't know what to do with me or how to communicate.

Bill makes a point of being at the hospital before seven o'clock

for his morning visit, just to be sure someone comes. Today no

one came. The agency is apologetic, but that doesn't solve the

problem, so my nurse this morning is Bill Baier. He is amazing.

He has watched my care for five months, so I spell to him what

to do, and he is very proficient. Fortunately Yvonne arrives a

little early—Bill looks exhausted by then.

The afternoon nurses usually know earlier in the day if they

can't make it, and they call the agency in time for them to find a

substitute. But I shudder to think what would have happened if

Bill had not been here this morning.

I always enjoy the weekends when Marjean works, especially

when she is with me Sunday mornings. She turns on the tele-

vision and we watch the First Methodist Church services. Mar-

jean sings along with the congregation, while I join in mentally.

This is a very special time for both of us, worshiping together.

Little by little, we are finding night nurses and backup nurses

for weekends and days when Elaine and Yvonne cannot come.

But always there is an uneasiness about potential no-shows.

Last night the agency sent a new, bright, bubbly nurse. As he

BED NUMBER TEN 223

does whenever we get a new nurse, Bill waited to check her out

and train her. She walked directly to my bed and handed me a

small card that read, "Hi, Sue, I'm Patti." Then she turned to Bill

and handed him a card. His smile made me curious. After a few

minutes of instruction from Bill, Patti took over easily, and Bill

left.

Bill is here early this morning. As Patti goes to the nurses'

station with Elaine, he asks, "Did it go all right last night?"

Patti fit in immediately, learning to spell and wanting to know

everything I needed to make me happy and comfortable. She

also was very chatty about herself and her interests. She loves

sailing but doesn't own a boat, so she frequently serves as crew

for people who do. She doesn't want to work full time, but she

assured me she'd fill in on short notice when someone else can't

make it.

Yes. She is very good.

"I thought so." He is smiling as he hands me the card Patti

gave him last night. On it is printed: Expect a miracle!

"April 24: Birmingham wants more chair time. She needs

change of gravity. He may close trach next week."

—from Bill's diary

Dr. Birmingham still drops in occasionally to see me, but now he

enters my room with a great flourish. He swooshes in, kisses my

hand, and gives me a hug—great show of affection. Why is he so

affectionate? In fact, why is he coming to see me at all? Doesn't

he know Dr. Lohmann is my doctor?

Elaine is despairing of my long and straggly hair. Elizabeth

talked to my regular stylist, but he does not go to hospitals.

Disappointing. What do we do now? Finally, Elaine remembers

that Phil from ICU was a beautician before he became a nurse.

Yes, he will do it—after lunch tomorrow. This means I'll be late

for therapy, but even Charles agrees a haircut is a priority for

me.

224 BED NUMBER TEN

What a to-do is brewing. Just the thought of having my hair

done is exciting! Phil arrives with scissors and a cape to cover me

as I sit in the wheelchair. We decide on a short, simple cut. With

much verbal exchange, the styling begins. Charles also comes up

to help supervise. I listen to the comments as the scissors click

near my ears, and hair flies everywhere. After Phil finishes,

Elaine shampoos my hair and all three marvel at my new ap-

pearance.

"Now you have to see how nice you look," Charles an-

nounces.

Before I can protest, he swirls the chair around and I look into

a mirror for the first time in five months. My breath stops.

Shock! How thin I am! I've known I lost weight, but I never

imagined the change. My face is gaunt, pulled on one side by

wasted muscles, distorted. No wonder my visitors wore such

startled expressions, no wonder some friends could not bear to

look at me! The ugly NG tube hangs out of my left nostril, down

to my chin, with a metal clip flashing at the end of it. I fringe-

with revulsion. Now I can understand why that tube has upset

Mother so much. Nearly every day she has commented on it and

told me how happy she will be when it is gone. I knew it was

there, but I never saw it as an appendage to my face—so

hideous.

The image in the mirror is thin, childlike. If I look so much

better now, how must I have looked before? My skin is pale.

There is no makeup to hide anything. My features look washed

away. All my freckles have disappeared from the lack of sun-

light. I try to lift a hand, wanting to touch my skin, but nothing

moves. It doesn't matter; there is nothing left of the way I liked

to look, the person that I remember.

"Doesn't your hair look great?" Elaine asks.

"You look terrific, Sue," Charles is saying.

Yes. The haircut isn't bad—a pixie cut. Mother will be happy.

She has always liked that style on me. But my hair is dark. The

sun bleaches my hair naturally—now it looks brown.

I hope no one can read my eyes. I must pretend to be as

pleased as they all are, but that sight is so disheartening.

BED NUMBER TEN 225

Sensing my sadness, Charles spins me around. "All right, Sue,

we have to go to therapy. Enough of this foolishness."

As he takes me down the hall, he calls to all the nurses, "Look

at Sue's hair. She's had a haircut." True to form, these dear

people all make a big fuss over Sue's new look. They are so

sincere, but I cannot erase the image in the mirror. Now I know

how I really look.

I am right about Mother. She loves it. "Now if we can just get

rid of that tube in your nose." I agree and resolve to force myself

to eat more. I will get rid of it.

Bill grins broadly as he studies his transformed wife. "That

looks better!" It probably does look better to him this evening,

but I smile inside. I wore my hair like this back when I met Bill.

Soon after our first date, I began letting it grow out, and Bill

soon informed me that the new style was a definite improve-

ment. When we looked at pictures from the company picnic I'd

gone to with him and his sister, Bill said, "It's a good thing I liked

you right away, because I didn't like that hair or the blouse you

wore to the barbecue." I knew then that I was seeing someone

with definite likes and dislikes, someone who would certainly let

them be known.

Yvonne has finished my evening ritual, and I am lying in my bed,

staring out into the darkness, fighting flashbacks of that face in

the mirror. Suddenly the picture of Elizabeth's friend Jane dis-

pels the melancholy. Dear Jane accepted me totally as I looked,

seeming not to notice anything different about me. I was just

Elizabeth's mother, a friend. The eyes of a child. . . . From her,

perhaps, I can learn to accept myself.

"April 27: Virginia didn't show. Had to wait for Mary. It made

me late getting to sleep. Mary will do four days."

—from Bill's diary

I've been upstairs ten days and am beginning to feel like a human

being again, thanks to the attention I am receiving. But poor-Bill

226 BED NUMBER TEN

is being worn to a nub lining up nurses for every shift, training

each new nurse, and often sleeping overnight on the couch in my

room.

"I'll call the agency," Elaine is saying as she picks up the

phone. By now she knows either she or Bill should call Friday

noon to see that I am covered for the weekend and to find out

who will be coming.

As she listens, her smile says reliable people are scheduled. Bill

will have a little free time over the weekend, and I have some-

thing to look forward to.

Visitors are coming more frequently now, and I am thrilled to

see friends again. Mother's cousin Ed from Florida is coming in

today. He has been like a brother to her, and our families were

very close in my childhood. He and I always had a special

relationship.

Mother wants me to look my best for him. "Sue, let Ed come

while you're up in the chair," she suggested. "It would be so nice

for you to be sitting up with us." I know my appearance bothers

Mother, and to her I look more natural sitting up. I understand

her request, but she doesn't realize I'd be in such pain in the chair

that I couldn't enjoy Ed's visit.

I told them to come about four-thirty, knowing Charles will

have me back in bed and I'll be freshened up by then.

Mother is noticeably disappointed when they arrive and find

me in bed, but to Ed it is no problem. He sits down on one side of

the bed, pointing Mother to the other, and begins to talk. They

have not seen each other for some time, so they first cover the

general family news, then begin on things they did in their

childhood—escapades they pulled on Mother's brother and

things he did to them. They exchange stories I've never heard.

Such good therapy for me, seeing my mother so happy, having

Ed here, and hearing all these wonderful stories.

Mother is still glowing over Ed's visit. She says she had forgotten

many of those episodes they relived yesterday.

"And Ed said he had a wonderful time, too." A slight shadow

BED NUMBER TEN 227

crosses her face. "But, honey, it would have been so nice to have

you in the chair."

There is no way to explain, even if I could use words.

My scream is soundless; the pain is unbearable. Charles pushes

repeatedly against my shoulder, trying to break loose the cal-

cium deposit that has frozen the joint. Each time he pushes, the

pain increases. At last he stops—for now. As he rolls me over on

the workout table, I catch a glimpse of Mother's face. She turns

away quickly and wipes her eyes with a tissue.

When I first moved upstairs, Bill explained to Mother that

noon was no longer a good time for her to visit me—I desper-

ately needed a few minutes' rest after morning therapy and my

bath. Since Mother was curious about my PT, she asked Charles

if she could come during my afternoon session. He agreed—as

long as she promised to show no sign of distress at anything he

did to me.

"You can't call out. You can't cry. If you can just sit there

without any reaction, you may come." Mother agreed, and she

began arriving during the last twenty or thirty minutes of the

two-hour session—sitting quietly, watching and waiting for me

to be finished.

Today she is not successful in her efforts to suppress a reac-

tion.

I am thankful that Mother and Yvonne can talk together

during our little trip back to the room, now also part of the daily

routine. Yvonne has such a genial way with people that she

breaks the tension after therapy and makes this a relaxed time

for all of us.

Occasionally Mother gives me a manicure during her stay,

and today she pulls the tools from her purse. Yvonne catches my

look. Today I am too exhausted from therapy even to have my

nails done. As Yvonne explains this, I see the shadow of hurt in

Mother's face. After watching that particularly difficult ther-

apy, perhaps she especially needs these few minutes of touch-

ing me, of feeling she can do something for me. But I am so

drained. How could she understand anyone being too tired to be

228 BED NUMBER TEN

touched? As always, Yvonne smooths everything over tactfully,

and the two of them chat pleasantly until Mother must leave.

Yvonne has become my protector and advocate—and a diplo-

mat of the first order.

"April 30: Birmingham wants to talk. . . . Birmingham off the

case! Lohmann says trach out next week, maybe."

—from Bill's diary

"May 8: Infection. Possibly sinus."

—from Bill's diary

My room has become a greenhouse, alive with plants and

flowers. As word got out that I was finally in my own room, the

floral gifts began arriving—from friends and from acquain-

tances we scarcely know, from Bill's co-workers, and from

people who know me from my various activities. Each new

arrival means a great deal to me. However, to Bill they represent

one more regular chore—the need to care for them. He is

becoming a grudging green-thumber at home, grumbling about

all the upkeep of house and garden plants, yet proudly reporting

each one that starts to bloom. As with everything else, he now

does what needs to be done to all the pots and vases in my room.

I watch him, bemused, as he snips leaves and dead flowers,

moving methodically from plant to bouquet to plant.

"This one's starting to look scrubby. What do I do?"

Cut back.

"Maybe it just needs more water."

No. Cut.

He clips a couple of inches off two of the longer stems and

looks back at me.

More.

He proceeds to give the plant a proper trimming—and then

waters it, just for good measure. The yellow leaves beg for

mercy!

Mother is also assuming responsibility for the plants. The

nurses love watching them both—Bill waters, and then three

hours later, Mother waters. Sometimes the plants approach

drowning!

"Happy Mother's Day, Sue." Bill is all smiles as he tears the

229

230 BED NUMBER TEN

wrapping off the gift he has ceremoniously presented. Laughter

bounces through my body, tickling even my toes as Bill holds the

gift aloft. A moisture meter for him to use on my plants!

Another sensible Bill Baier gift. My plants will love it!

He takes down the Easter cards and hangs Mother's Day

cards from him and the girls. All the other space is covered with

get-well greetings, including the biweekly Snoopy cards that still

come from George and his canine friend, Hure.

Once we established a schedule for my personal care, respira-

tory treatments, and physical therapy, I expected things to go on

happily ever after. But this is a hospital, and nothing ever

remains smooth.

My lunch feeding time takes longer as I eat more, and Charles

grows impatient with the delays in my getting to therapy. Elaine

is becoming more impatient with Charles's attempts to hurry

the process. And I feel increasingly tense over the friction be-

tween them.

I now spend two hours each morning and afternoon in phys-

ical therapy. Charles starts every session with warmup exer-

cises, followed by something very strenuous. Then I get a little

rest period. Other patients come and go during the session; I see

them all. Usually I am the first to arrive and always I am the last

to leave.

We have graduated from range of motion for circulation to

"the real thing." All muscle is gone, all of it. My arms and legs

are mere bones covered with sagging skin hanging where muscle

once had been. Charles and I must work to rebuild every muscle,

which means getting the joints mobilized first. After all these

months of paralysis, most of my skeleton is rigid. Calcium

deposits, like the one Charles has been working on in my

shoulder, have formed in joints all over my body, and all of them

have to be broken loose for me to regain mobility. Breaking

through each one produces excruciating pain. He pushes my

limbs until they will move no farther. Then he pushes a little

harder. Every move is done twenty times, each time going a tiny

bit beyond the previous one.

BED NUMBER TEN 231

I brace myself for one more shove of Charles's powerful grip

against the unyielding shoulder. Finally the arm goes flat. A

breakthrough! Our eyes meet and light up. The tiny grin that my

static lips cannot contain reflects his joyful smile. Pain is forgot-

ten for the moment. Charles calls in the rest of the department to

see what Sue has accomplished. Time for a celebration. My

nurses carry the good news upstairs and the floor nurses add

their cheers.

There will be more celebrations, but in between, I know, will

be days of frustration and increasing pain. There is no time for

basking in any accomplishments. Always ahead lie more pain

and more disability to conquer.

I try to keep my emotions in check during the agonies of therapy.

I have always been a very private person. I don't often laugh out

loud and I am very reserved in the way I handle my feelings. But

as screaming pain continues, tears flow every day. I cannot hold

them back. Charles also tries hard not to show his feelings,

which are always close to the surface. He attempts to mask his

own anguish, and when he knows he has to hurt me, he can't

look me in the eyes.

"You know we have to do this, Sue. I'm sorry," he says so

often.

Today was particularly difficult. Nothing moved. No celebra-

tions. Charles was silent and seemed never to look at me

through all that agony. Mother, Yvonne, and I are finally back

in my room.

"I know it was bad today, Sue," Mother says sympathetically.

"You couldn't see Charles's face, but I could. I thought he was

going to cry with you."

Charles is talking today, as he does during most of our ses-

sions—anything to distract me. He talks about his yard, the

garden he is putting in. He tells me what he did over the

weekend. He loves to cook and eat, and he enjoys talking about

his gourmet creations. And always there is a new diet on the

horizon.

232 BED NUMBER TEN

We work so closely every day that I probably know as much

about his private life as anyone else.

Other people from the department come in and out. Ginnie

often works in the same room, frequently with hip patients.

When someone new begins therapy sessions, she introduces him

or her around the room, as if we were at a little party. This helps,

since we are all in here together every day.

Sometimes, when I am about to wallow in self-pity, I am

introduced to a new patient, a quadriplegic or someone who has

lost a leg. I feel guilty for my own impatience as I see that the

tiniest bit of new muscle has returned to my own limbs. It is

coming back; I am getting well. And I am ready to work again!

A custodian, pushing a large cleaning bucket, stops at the

door of the therapy room and smiles at me. "Charles, you're not

hurting Sue today, are you ?" he asks. He winks at me and moves

on, not waiting for an answer. Everyone in the hospital seems to

know how grueling and painful my therapy is, and they con-

stantly are cheering me on.

Mobilization of my hands has become the most painful of all the

treatments. No matter what else Charles does to me, this is the

worst.

My fingers are straight and rigid, frozen close together. Each

time he begins to work my hands, trying to bend the fingers, they

grow red and puffy. My nurses soak them after each session and

apply lotion, but still they look as painful as they are.

I stare at what were once long, slender fingers, and they do not

even look like my own hands. And I still miss my wedding ring.

Will these fingers ever bend?

Throughout these weeks of therapy, I have waited for the day I

can get into the Hubbard tank. Charles mentions it often.

"Golly, Sue, as soon as that trach comes out, we're going to

get you in the tank." His eyes sparkle with excitement. This is a

big step, and it won't be long now. It is something positive to

look forward to.

Sometimes, Charles pushes my chair over to the side of the

BED NUMBER TEN 233

tank and says, "Here it is, Sue. We're going to fill it with nice,

warm water and you're going to be in it in no time at all."

I can't wait to get into that huge stainless steel bathtub, down

into the water. At home, I regularly took showers, but I loved to

soak in a nice, hot tub a couple of times a week, just to relax. It

seems like forever since I've known the soothing feeling of warm

water.

"It won't be long, Sue," Charles promises.

"May 11: Charles stood Sue up!"

—from Bill's diary

If Charles pulls me up into a sitting position and sets me at the

edge of a therapy table, I can hang onto the table and sit alone.

We are at the end of the afternoon therapy session, and the

look in Charles's eyes says we are going to play his little game:

What can we get Sue to do today?

"Just one more thing, Sue," Charles says. His grin grows

impish. "I think it's about time we stood you up." Stood me up ? I

can't do that.

The table is low enough as I sit that my feet are flat on the

floor. Charles is standing in front of me. He puts my hands on his

shoulders and places his large, strong hands on my sides.

"Hold on, Sue, and let's pull." I am excited, but not afraid. I

am never afraid when Charles is holding onto me. Slowly,

steadily, he stands me up in front of him. It is astounding,

thrilling. Tears come immediately to my eyes, but I feel the smile

pushing on my lips. He has me steadied, and a quizzical look

appears on his face. Charles, who probably stands rive-foot-

eight or five-foot-nine, looks up into my eyes. "Sue, you are tall."

Ginnie and Yvonne are standing watching us, and both are

laughing convulsively at the two of us standing there.

I am trembling, but still I feel no fear. I am secure.

It is only a minute or two before he eases me down again, but I

have stood up for the first time! PT celebrates. Yvonne spreads

the word upstairs, and soon all the floor nurses come in to

234 BED NUMBER TEN

congratulate me on my accomplishment. We are like family

now. They often come in to see me, even when they aren't

needed to help my nurses. But on these special days, they really

help me celebrate.

I can hardly wait for Bill. He needs some good news, too. As I

lie waiting, I laugh to myself, thinking about the expression on

Charles's face as he looked at me standing in front of him and

said, "Sue, you are tall." It has been some years since I have

experienced that reaction.

I was always tall, just like my daddy. They called me "Daddy's

little girl," but that was because I looked like him and I was tall

like him. In all of my school pictures, right from the beginning, I

was always in the back row, among the tallest students. By the

time I entered high school, I was pushing five-foot-ten and still

growing. I don't remember my height being much of a problem

in high school, perhaps because I dated a boy who was a little

taller than I.

In college, though, it was different. Friends were always

trying to arrange blind dates for me, and I soon discovered that

the rest of the world was much shorter. Girls would say, "Sue, he

is tall." And when I'd meet the young man, either I looked him

straight in the eye or I looked down at him. Or, at a dance, a

fellow would approach where I was sitting and ask me to dance.

Before I ever stood up, I knew what I was going to hear. "Oh,

you are tall!"

In all these months of working with me and transferring me to

the chair, workout tables, and bed, it had never registered with

Charles that I was six feet tall.

"May 12: Track tube out!"

—from Bill's diary

Charles has been anxious for the tracheostomy tube to come

out. I want to get into that Hubbard tank, but I am also a little

nervous at the thought of having the tube removed. I still need

suctioning and breathing treatments. As much as I want to be rid

of the trach, the idea of not having it is also scary to me.

Dr. Rockne, followed by Peter, has just strolled into my room.

BED NUMBER TEN 235

Their expressions are suspicious.

"Here, let's have a look at that trach," Dr. Rockne says. As I

study his eyes, I see a glint. All of a sudden, he reaches his hand

up to the trach. Zip. It is out—just like that. I am astounded. It

hurts only for an instant.

"There!" he says. "It's done."

Yvonne is laughing. "Sue, you can talk now. I can't wait to

hear your voice."

"Wait just a minute," Peter says. "You have to talk to Charles

first."

As Peter puts a gauze pad across the hole in my neck to allow

my voice to activate, Yvonne is dialing Charles's extension.

When he answers, she gives the phone to me. I can't think of

anything to say; I am speechless. I was always very shy in school,

and that's how I feel now: like a timid schoolgirl who has to

speak before the class.

Peter and Yvonne are looking at me with obvious excitement.

Charles's voice comes through with a tinge of impatience,

"Hello." I don't even know if my voice will work. "Hello," he

repeats—with a touch of annoyance.

"Hi, Charles," I say finally in a voice that sounds strange to

me. I am so excited I don't think I am even moving my lips.

"Who is this?" he asks. Yvonne takes the phone and explains.

Almost before she finishes, it seems, Charles is in my room,

radiant—his whole face is one big smile. Word spreads through-

out the hospital, and staff members from all over flock in—

Ginnie, James, respiratory, floor nurses. Within minutes, the

room is full. Everyone is crowding around the foot of my bed,

laughing and clapping, wanting me to talk. I am so embarrassed

at all the attention that I can't utter a word. I just lie there in

shock—thrilled to death, but scared, mighty scared.

Charles assures me that the little hole in my throat will close

up within a week or two, and then I can get into the tank. We're

on our way.

Bill stands at the door for a minute, smiling.

"Hi, Bill." That sounds right—to both of us. We just grin and

cry—and talk together all through the visit.

236 BED NUMBER TEN

He is ready to leave now, and I know what I want to say, but

again I feel shy, embarrassed—just like when we first went

together. It hadn't taken me long back then to know I was in love

with Bill Baier, but I couldn't tell him so. Even when we were

engaged, the words still wouldn't come. It wasn't until shortly

before our wedding that I finally knew I could say those words.

From then on, they came easily—until tonight.

Bill is leaning over now to kiss me, and my overbrimming

heart sends the "I love you" softly across my lips. Tears pour

from both of us as he holds me in a long, warm embrace.

"Oh, Sue, I've waited so long to hear that. So long. . . ."

Tonight, when Bill phones, I am the one who says it first.

"Good night, Bill. I love you."

Once Charles hears my voice, it becomes his goal to make me

speak louder. Every time I speak, he yells at me, "Louder!" He

just cannot understand that I have always been soft-spoken. He

is determined that what I need is to exercise my lungs and vocal

cords so that I can shout.

"Sue, speak up."

"But Charles, this is the way I talk."

Still he pushes for more. "Now, Sue, you must practice saying

the alphabet and counting to ten, getting louder and louder." He

moves farther away from me. "Now yell it to me."

Finally Bill explains, "Charles, Sue doesn't have a loud voice.

It's not going to get much louder than it is right now." I think

Charles believes Bill. After all, a husband knows how loud his

wife can shout.

One thing I don't need to practice is talking. After being

silenced for nearly six months, I can't stop talking—especially

to Bill. It is wonderful to communicate all the little things I never

had enough time or energy to say—to straighten out all the past

misunderstandings when things were not as they appeared.

There is so much catching-up to do.

Elaine could not make it to work this morning, so Bill took over

at seven and stayed until noon. Now Katherine has come to

BED NUMBER TEN 237

relieve him—just in time to feed me lunch. I am excited to have

her here, the first time I've been alone with her since she came

home for the summer. Now we can talk. I don't want Charles to

come in for PT. I don't want any visitors. This is my time alone

with Katherine.

It is a difficult chore for her, feeding her mother. It's an

awkward exercise, hard for her to know how much to put in my

mouth at a time, or how my swallowing works. She is apprehen-

sive, afraid I might choke. Being in Nashville, she was spared

the day-to-day reality of my illness. Having my helplessness

dumped on her now in such a massive dosage is almost too

much. I am sorry it has to be this way, but I love having her with

me for these few hours and hearing about her college experi-

ences. It is certainly different from my days in college. Was it

really a generation ago that I went through this? Katherine

reminds me of myself in many ways—especially her determina-

tion about the choice of school. She chose Vanderbilt despite

discouragement from Bill—just as I chose SMU a generation

ago.

Somehow, my parents and I always assumed that I would go

to college. In those days, not many of my high school classmates

planned to go on to school. We lived in a farming community,

and most of the boys went to work on the farms. Many of the

girls would soon marry them. I didn't fit that mold, but there

was a difference of opinion over where I would go to school. I

wanted to go to Southern Methodist University in Dallas, be-

cause that was where Daddy had gone. My parents, however,

felt that after a small high school, I needed a small college. And

that's where they originally sent me, to Southwestern in

Georgetown, Texas, outside of Austin. Some good friends of

theirs had graduated from there and assured us it was a good

Methodist school.

I guess my parents talked me into it, and by the time I left for

Georgetown, I had decided that it was what I should do, even if

it wasn't what I wanted to do. But once I started classes, there

seemed to be nothing to do except study. There were none of the

extracurricular activities I was accustomed to. Southwestern

238 BED NUMBER TEN

wasn't what I was looking for. I was determined to go to SMU

the next semester.

My parents talked to the registrar at Southwestern, and she

told them, "Let her go. That's where she wants to be, so that's

where she'll do best." I was very happy when I got to SMU.

There were about five thousand students, as well as everything I

was looking for in both business and home economics classes—

and plenty of outside activities.

After my own experience, I was pleased that Katherine stuck

by her choice of schools. And now I'm happy she is finding what

she wants at Vanderbilt.

Bill opens his briefcase and unpacks his lunch—a sandwich, a

Twinkie, and an apple. While his after-work visits are still the

longest and most relaxed, noon has also become special. His

lunch is always the same, but at least he eats it with me. Because

his visits in ICU were so short, he would inhale his food before

or after his visit.

Elaine goes for her lunch while Bill is here. While he eats, I tell

him the funny little things that have occurred to me. These

private moments are especially precious after not having them

for many long months.

No one has come to visit this noon, so after his lunch, Bill

pulls up a chair beside the wheelchair, and we hold hands and

doze—perhaps ten minutes. The warmth and comfort of these

minutes seem to anesthetize my painful hips.

Sometimes Bill sets his watch alarm, but usually the nurse will

awaken us when she returns and opens the door. It is rest we

both need, and it is sweet to wake up with Bill holding my hand.

Now that I can talk, ICU nurses and respiratory therapists stop

in frequently during their lunch or coffee breaks. It is fun to be

able to converse with them. They seem to enjoy getting to know

this person they never saw move or heard speak.

Ginnie's periodic visits to my room remind me of her little

Sunday evening physical therapy sessions. She was so faithful all

the while I was in ICU. Rarely did she miss, and when she knew

BED NUMBER TEN 239

she couldn't be there, she'd apologize and explain ahead of time.

But it always seemed strange to me that no one ever took over

for Ginnie when she couldn't come.

I decide to ask Charles about this.

"No one came, Sue, because no one is on the schedule for

Sunday evenings."

"Then why did Ginnie have to come every week?"

"She didn't have to, Sue. She came because she wanted to

come."

"I don't understand. Why did she work nearly every Sunday

night?"

"She just came in to work with you because she couldn't stand

to know you were lying there without any range of motion from

Saturday morning until I got you on Monday." He resumes

working on my ringers. "She and Rob used to come over this

way to do their laundry so she could run in and out of the

hospital and take care of you."

"You mean she didn't get paid for all those Sundays?"

Charles smiles, shaking his head slowly.

I am incredulous. She actually came in week after week just to

take care of me? As I try to sort this out, Ginnie comes into the

therapy room, all bright and cheerful. She looks at me, and as

our eyes meet, I feel a flood of tears. I try to speak but can't.

Words won't come. I just stammer silently.

"What's wrong, Sue? Is Charles being mean to you again?"

she asks, laughing with mock sympathy.

"I told her, Ginnie," Charles says.

"Told her what?" she asks.

"About the Sunday nights."

Ginnie looks away. "Oh." No snappy, bright response this

time. She hurries off to her patient. What an extraordinary gift.

It will be months before the opportunity comes for me to thank

her, and even then, words are inadequate.

"May 16: Sinus infection continues. Lots of phlegm. Needed

suctioning through hole."

—from Bill's diary

240 BED NUMBER TEN

Lissy's luncheon is on hold; her schedule at graduation time is so

busy that we'll have to postpone it until later in the summer.

Now, however, we must take care of Douglas. Bill is arranging

for him to take a date to dinner and a performance of The

Student Prince at Jones Hall.

"He also should have a small gift." Bill's sigh is expected.

"After all, for a girl we would get some small keepsake. Douglas

deserves as much." I settle on a silver bookmark; Elizabeth can

select it. Bill arranges for the dinner bill and the theater tickets. I

know Douglas will enjoy the evening, and so will I.

I wish I could be going to Douglas's and Lissy's graduation. I

loved all that excitement last year with Katherine. Suddenly I am

thankful I am sick now rather than next year, when Elizabeth

will be graduating—if I have to be sick at all! After Elizabeth

goes off to school, it won't be long before we start college

commencements. I sigh and smile, thinking of my own college

graduation. Someday, when the girls are finished with school, I

will tell them about my graduation night at SMU.

All through college, I was about as straitlaced as anyone could

be. With this "talent" for doing the correct thing, I was named

monitor of my sorority house during my junior and senior years.

It was my responsibility to check the girls' rooms—it's hard to

believe they used to do that sort of thing in colleges—and if they

didn't make their beds, pick up their clothes, or whatever, they

received demerits and could be grounded or disciplined. They

tried to tell me that I was the perfect one for that job because

nobody got mad at me. But it embarrassed me to report anyone.

I would wait around in the morning as long as I could, hoping

everyone had time to get her room done. Terrible.

There was another girl in the house who also had a reputation

for always doing the proper thing, and we both happened to stay

at the house the night after graduation. That night, we decided

we had to do something mischievous, break some rule before we

left.

There's a fountain in front of the main hall at SMU, and

students were strictly forbidden to step into it or put anything in

it. So we walked out of the house, after hours, went to the

fountain, took off our shoes, and walked around in the water.

BED NUMBER TEN 241

We didn't get any particular pleasure out of doing it—no one

even saw us—but at least we did have the satisfaction of break-

ing two rules before we left campus.

A new step forward, they tell me. I am being put on a portable

commode every morning. It is about time for those muscles to

start performing. I am very wobbly on this inauspicious chair,

and the hard seat is painful. Sitting out in the open in my large

room, with people coming and going, is hardly conducive to

such a private function. Impatience is counterproductive, I

know, but I want very much to regain control. So each day I

endure the discomfort and humiliation for "just another min-

ute"—and each time it is all in vain.

Most of the staff still refuses to believe that every minute is

misery in the big, wooden wheelchair. After all, they are putting

pillows under me. No, the real problem, they insist, is fear—I

am fighting the chair because I am afraid of it, which is pre-

posterous. I am afraid of the pain, not the chair.

Marjean, who formerly worked in an occupational therapy

unit, tells Bill about a special cushion filled with gel. She is sure it

will help me in the wheelchair, and I am anxious to try anything.

"They advertise that you can sit on an egg on this cushion and

not break the egg," she says. She advises Bill to check with a

hospital supply rental company. "I'm sure you can rent them."

Several days later, Bill walks in at noon with a box. He lays it

on the bed and looks at Elaine and then at me. A moment of

silence.

After a deep sigh, he says, "This cost me $94. If it doesn't

work, don't tell me!"

I try not to laugh. Elaine is startled and surprised. In the box is

the pillow, complete with a plastic egg for effect. They do not

rent the pillows, so Bill had to buy one.

Bill lifts me as Elaine slides the cushion under me. It squishes

when I sit on it. Because I am so bruised, the new cushion can't

alleviate my problems immediately, but it is more comfortable. I

assure Bill that it is a big help. He chooses not to question me—

just in case. We don't talk about the cushion any more today!

242 BED NUMBER TEN

"May 19: 24 weeks. Feeling impact—running Elizabeth's er-

rands, cooking, visiting. No end."

—from Bill's diary

Bill is growing very anxious for more progress. He wants me to

be home as much as I want to be there. Now he has a new

routine for his evening visit—a regular inspection of my prog-

ress as soon as he walks in the door.

"What moved today?" He is so full of anticipation that it

hurts me when there is nothing new to report. He needs each

high as much as I do.

He stands at the foot of the bed, leans down so his eyes are in

line with my body, and checks over everything. "OK, let's see

the toes move." I try my best. "Big toes move a little in both

directions!"

A bit more of a smile with my mouth, an inch higher arm lift. If

there is nothing new today, he reminds me of what moves now

that didn't move a week ago. Bill never falters in his cheerleading.

"May 23: Saturday do-list. Weed side flower bed and asparagus

bed. Fix banana plant. Fertilize roses. Put out snail bait. Drain

lawn mower and put in new oil. Fix bicycle tire. Take laundry.

Fix switch on electric toothbrush. Write thank-yous. Wind

clock. Check air-conditioning system. Call Sue."

—from Bill's diary

The pendulum has swung. From the euphoria of having my own

room and private nurses, I am sinking into the despair of having

spent twenty-five weeks in the hospital, the grindingly slow

return of my muscles, and the exhaustion of four hours a day of

agonizing physical therapy.

Charles, once my supporter, my friend, has now become my

taskmaster. His frustration that I am not progressing fast

enough drives him to push ever harder. He's worked with only

one other case of Guillain-Barre syndrome—a much milder

case—and that patient was out of the hospital in three months.

But I am not improving at the same rate, and this disturbs

Charles. He seems convinced that if he and I work hard enough,

we will get the job done faster.

On a workout mat he positions and twists me, struggling to

pop calcium deposits or to loosen a frozen joint. It is awkward,

painful, and frustrating. Most patients can be told, "Hold your

leg like this," or "Bend your arm this way." But I don't have the

control to do these things, and this taxes Charles's patience.

He is also frustrated because the trach hole in my throat is not

closing, so I still can't go into the Hubbard tank. This is upset-

ting to me, too; I've waited a long time to feel that warm water.

But to Charles it means continuing limitations on the therapy he

can do without first limbering me up in hydrotherapy.

243

244 BED NUMBER TEN

Nerves are fraying. Gary and Charles tell Bill I am deliberately

spending too much time eating, trying to delay going to therapy.

I plead with Bill to tell them I must eat, and it just will not go

down any faster. Chewing and swallowing each morsel is te-

dious and time-consuming.

Now Gary stands beside my bed, hands in his pockets. "You

have to stop this stalling, Sue," he says. "You're hurting your-

self. Physical therapy is the most important part of your day.

Now, from here on, this is the way it is going to be. . . ."

I calmly interrupt. "When I was a new patient in intensive care,

you said you were pleased because Bill told you I'd always

exercised." The words spill out. "I played tennis and I swam." I

have his attention. "And you said, 'Sue, since you have made

yourself do all these things that are good for you, you're going to

be better off now.' This still applies. I am doing therapy now to

help myself. I know that I am the one who is going to suffer if I

don't."

He is backing down. "Well, we're doing all this for your own

good."

"I'm very aware of that, but I also know what my body will

and will not do, and I will push myself as hard as is humanly

possible. However, I also know I must eat to gain weight and

strength. And that, too, is for my own good."

He leaves, his hands still in his pockets.

Bill arrives soon afterward. "Well, Sue, I hear you and Gary

are at it."

"What did he say?"

"Just that you aren't cooperating."

I can't believe this—Gary didn't listen. He is still blaming me

for my slow recovery, and he is also trying to pull Bill into the

middle of the conflict. This time, however, Bill knows I can

speak for myself, so he'll just watch from the sidelines.

The cold war between PT and Sue Baier continues for several

days. I feel the chill.

I question myself. Am I getting paranoid? Do I really need

pushing from the staff? Do they have to make me mad enough to

BED NUMBER TEN 245

fight so I won't just give up and quit altogether? I can accept that

much. Yes, I have to be pushed, and we must keep working. But I

resent the accusation that I am deliberately delaying therapy.

They are the professionals. They were supposed to anticipate all

these things—the stages of my recovery as well as the impor-

tance of eating. But they can't—or won't—understand my

position. What more can I do to reason with them?

Something more drastic has to be done about my stiff, straight

fingers. They have to bend. Charles says there are devices that

can be ordered, but he wants to try something else first. He sent

Bill out to buy heavy gardening gloves and large safety pins.

From now on, any time I am not in therapy, and especially

during the night, he wants me to wear the gloves, with the

fingers pinned to the palms to force the fingers down.

There is no way to describe the pain.

Bill finds me in tears, having had no sleep. Charles still be-

lieves I am not cooperating, so he is not being the kind, suppor-

tive friend I've come to trust. I need a little tender loving care,

and Charles isn't giving me any. For the first time in all this

illness, I cry out to Bill, "Why me?" Once again we shed our

tears together.

"Why does Charles blow hot and cold? How do they know

how much I can take?" Bill has no answers. He just listens and

comforts me.

"May 30: Charles discouraged. Does what he thinks situation

permits. Must push respiratory challenge. Much coughing,

phlegm. Antihistamine every three hours. Trach hole shows

moderate staph. Antibiotics."

—from Bill's diary

OK, Sue, I tell myself, we have to get along and make this

therapy work. If I eat less breakfast, it will go faster, and my

stomach may be less apt to get nauseous during therapy. I'll just

have to make up the extra calories later in the day. The Sue Baier

246 BED NUMBER TEN

who studied dietetics knows that breakfast is the most impor-

tant meal of the day, so my decision troubles me. But we have to

get back on a smooth course with PT, and this is one way to

make it happen.

Is it my imagination, or is my stomach growling? At least

Charles is pleased to see me arrive on time for therapy.

There's that look again in Charles's eyes. What is he going to try

today? I am standing in front of him. My knees wobble, but I am

secure in his grip.

"OK, Sue, lift your foot and take a step." He sees my surprise.

"Come on. You can do it. I won't let you fall."

I concentrate on every muscle and joint in my left leg. Nothing

wants to move. Then, ever so slowly, the foot responds to my

commands. It takes a step!

"Now the other foot, Sue. Come on. Keep going. Just one

more!"

Again total concentration. I issue the message to my right

foot, again and again. Go. Go.

It shuffles forward the slightest bit. But it is a step!

"You did it, Sue; you did it!" His hands are trembling with

excitement, but still he holds me firmly. Both of us are crying.

"Sue, there are people in this hospital who said you'd never

move again, let alone walk. But they were wrong, just as I

always knew they were! You have just walked!" More smiles

and tears, and another celebration in PT.

The war is over between us. We are a team again. The whole

hospital rejoices with us.

Of all the cheers over my newest accomplishment, the most

touching is a card from Bill's father. He always had a special

talent with verse, and before his stroke, he wrote clever poetry

for every occasion. Bill still treasures the poem his dad wrote for

his graduation from high school, and I have saved the verses he

sent for birthdays and anniversaries. His beautiful handwriting

also enhanced each greeting. But it all stopped after his stroke—

his writing hand was paralyzed. All he could manage now was a

BED NUMBER TEN 247

laborious, "Love, Dad" on a card or letter sent by Bill's mother.

Since I've been ill, greetings have come often from Bill's mother,

always with an encouraging message passed on from Dad.

Now comes a card addressed to me and signed with the

labored words, "Keep up good work. Love, Dad." What a boost

this is from someone who has suffered with me each day.

"June 5: Call Dad. Thanks for letter."

—from Bill's diary

It is June, and we are moving again. Orders are to begin clamp-

ing the Foley catheter to distend the bladder. That is encourag-

ing. And this time there is no discomfort; the bladder is ready.

Dr. Lohmann has come in for his daily visit. He speaks briefly

with Elaine, and then I hear, "Let's take out the NG tube."

Before I can fully register what he's said, he reaches over and

takes hold of the tube, and out it comes. I am startled—and

delighted. I want a mirror immediately, to see myself without

that ugly appendage. This is better, a lot better. But the lack of

facial muscles still bothers me.

Since that tube always disturbed Mother, I have been anxious

for her to see me without it.

She has been sitting quietly, as usual, through my therapy ses-

sion. No comment about the missing tube. At last Charles fin-

ishes, and Mother, Yvonne, and I head back to my room. The

three of us are sitting here, Yvonne and I looking at one another

and smiling knowingly. Still Mother doesn't notice that it is

gone!

Finally Yvonne hints: "Sue's nose certainly looks better to-

day, doesn't it?"

"Sue! Your nose. The tube is gone! Sue, that dreadful tube is

finally gone!"

Poor Mother is ecstatic, yet she is very upset at not having

noticed. But watching me in therapy every afternoon, holding

248 BED NUMBER TEN

back the tears, is so disturbing for her that she has difficulty

focusing on anything else. Now she smiles. We all do.

What a surprise when our associate pastor, Paul, walks into my

room. This is the first time he's been here since Christmas Day.

I've wondered about Paul, wondered why he has never come

back. I even asked about him on occasion during San's weekly

visits. Hospital calls aren't Paul's responsibility, of course, but

we've known him well, and he did come that one time.

"I'll be leaving St. Philip soon, and I couldn't go without see-

ing you to say good-bye." Paul was getting his first senior

pastorate.

"I feel terrible, Sue, that I haven't been back all these months."

His voice is slow and thoughtful. "This is the first time that I

could make myself come again. I want to explain that to you."

"That's not necessary, Paul. I understand."

"No, you don't, Sue," he says. "You see, when I was a

youngster, my mother had a very serious illness. For some

reason, when I saw you on Christmas Day, you reminded me of

her." His expression is sad. "I'm embarrassed to tell you this, but

I couldn't face that again. In my years of ministry, I've handled

everything I had to handle, but I couldn't deal with this. Can you

ever forgive me?"

"Of course, Paul. I do understand, and there's nothing to

forgive."

He relaxes now, and our conversation flows freely. For the

first time I am getting to know this fine young man. I admire him

for the courage it took to come and tell me what he did.

To Charles, knowing me for a long time as only a helpless object

with expressive eyes, my reemerging personality is a shock.

Though I have never mentioned any aversion to "colorful"

language, Charles immediately senses a propriety. One of the

other patients in PT is a woman with a rather vivid vocabulary.

She is angry, and perhaps frightened, about her condition and

BED NUMBER TEN 249

her seemingly slow progress toward recovery. I can certainly

empathize with that impatience. Charles has her doing some

stretching exercises that she finds difficult, and she expresses her

exasperation strongly—to put it mildly.

"Be quiet," Charles scolds her, "there's a lady in the room."

I can't hear her response, only her grumble. But Charles is

firm. "I hurt Sue much more than I do you, and she doesn't talk

to me like that."

I feel bad for her. He does not know how much pain she is

experiencing, and she surely does not mean to bother anyone

else. After she leaves, Charles returns to work on me again and

he apologizes for her. This amuses me, since Charles's vocabu-

lary has a few choice words that slip from his mouth on some

occasions.

In addition to my spoken words, Charles is discovering that

body language says a great deal. Sometimes even my meager

movements evoke surprise from him. I am sitting waiting for our

next workout. One hand crosses over my lap and rests atop the

other at my right side.

Charles studies me, tipping his head and raising an eyebrow.

"Oh, my. Look at you! A real lady."

I feel myself blush. It has been so long since anyone observed

me as a lady.

In my room after therapy, Yvonne opens a large sack she's

been carrying. From it she pulls a Vogue magazine.

"Is this something you maybe used to read, Sue?"

I can feel my face lighting up.

"I saw this on the newsstand today and I thought you might

enjoy looking at it."

She pulls the eating tray over in front of me and places my

glasses on my face. While I spend my miserable time sitting in

the wheelchair, we share Vogue. For ages I haven't seen any

magazines, let alone Vogue. What fun to look at clothing and all

the new styles!

"Well, what have we here?" Charles has come in to put me

250 BED NUMBER TEN

back in bed, and his eyebrows shoot up in surprise. This is the

first time he's seen me wearing glasses. Plus he cannot fathom

why anyone would read Vogue magazine. He considers the

whole scene quite hilarious.

It is the little things that keep us laughing and help make life

bearable. The nurses and I frequently laugh about Dr. Lohmann

and The Great Bacon Caper!

Since I love bacon, whenever I have it, I want it left for my

mid-morning snack. One morning Dr. Lohmann came in before

I had been fed my bacon. My tray was pushed out of the way for

his visit. Just as he finished his routine questions and was turning

to leave, he spotted my bacon and apparently assumed I was not

planning to eat it. So, without comment, he grabbed my bacon

and marched out of the room, happily shoving it into his mouth!

Since then, the nurses are all pledged to stand guard over my ba-

con—just in case Dr. Lohmann visits before I have time to eat it.

Of all the therapy I am getting, the work with my hands is still

the hardest. Though it is now routine, putting the gloves onto

my hands is a miserable chore for the nurses, a job they dread. It

is worse than getting mittens on an infant. My hands are still

rigid, the fingers fixed and close together. The nurses must

powder my fingers and work each one into place in the rough

canvas garden gloves. At times, Charles orders them put on at

noon, which is even more cruel. That is my precious period of

rest and handholding with Bill.

Bill, meanwhile, continues to monitor my progress. Each day

I go through my paces for him—two toes, a couple of fingers.

Besides raising an elbow to lift my light switch, I can raise one

arm at a time off my lap. If Elaine arranges my chairback to a

forty-five-degree angle, I can lift my head a couple of inches. But

that is possible only from this precise position.

I work every day in my "spare time" to follow through on

what Charles has accomplished during therapy. Before going to

sleep at night, I try to move everything I can. It takes concentra-

tion. I force my attention onto each muscle as I lift both arms

BED NUMBER TEN 251

and make the fingers touch. When I finish, the hands drop back

to the bed, and I am exhausted. But I am doing it; that's what

matters.

"June 12: Wedding gift for Mary."

—from Bill's diary

Mary has become my regular night nurse during the week. At

first I hardly knew her because when she came on at eleven, it

was time for me to go to sleep. But I liked her, and whatever I

needed done during the night, she did well. Occasionally, how-

ever, she works the three-to-eleven shift on a weekend, and this

is when we talk.

Mary is getting married. She is happy and in love, but it will

be an interracial marriage, and her family has all but disowned

her. Her brother is not coming to the wedding, and she doesn't

know if her parents will be there, either. Mary speaks openly

about the difficulties she and Lee are going through over this

marriage. I cannot advise her; there are no answers. But I can be

a good listener.

Mary is sharing with me the excitement of every bride prepar-

ing for her wedding. In fact, she wants me to be there. She plans

to send a van to pick me up in the wheelchair and take me to the

church! I'm sure it is impossible, but it is all part of the fun of

planning.

Mary will have several bridesmaids. She doesn't want them

to pay for dresses, so she has decided to make them, a huge

undertaking.

"Sue, would you mind if I sew them here during the night

while you sleep?" she asks. "I promise I won't let it interfere

with your care."

Mind? I'm delighted to share this adventure, especially since I

also love to sew. Some of my night nurses read and others do

handwork to help them stay awake all night, but this will be fun

for me to watch.

Mary brings in the patterns and the material and lays every-

252 BED NUMBER TEN

thing on the floor to cut out the dresses. Next comes the pinning

and hand sewing—everything not requiring a sewing machine.

They are coming along nicely—and they are beautiful.

I am definitely not strong enough to attend Mary's wedding this

afternoon, but she and Lee have been on my mind all day. In

fact, as Mother and I are discussing the dresses, suddenly the

door swings open, and here they are—Mary in her wedding

gown and Lee in his tux! I can't believe they have taken the time

to do this! They have only a few minutes, but it is dear of them to

come to see me.

The girls' summer appears to be busy. Katherine is working at

our neighborhood pharmacy again, and Elizabeth also works

there part-time.

It is time for the church's family camp weekend at Mo Ranch,

and Bill has arranged for the girls to go with a friend of ours. I

am sorry to miss this. We've gone there for years, and it is always

a lovely long weekend shared with our church friends and their

families.

June is here, and with it Katherine's birthday. Another special

family day. I struggle with the tears and fight to escape the

sadness. It cannot be nineteen years, but it is hard to remember a

time before Katherine, a time when I wasn't a mother.

When Katherine was due, so was Father's Day. I was sure our

baby would be here on time, so I decided Bill must have a gift for

his first Father's Day. Pocket handkerchiefs were all I could

afford, but I knew he'd be pleased.

I had a noon appointment with the doctor on Friday, June 15.

This would be it, I knew. He'd informed me that if I was ready, I

would go straight to the hospital. So I had my hair done that

Friday morning, and my bag was packed and in the car. When I

walked into the doctor's office, I was ready to have my first

baby. Even Katherine, it seemed, was ready: I was starting to

dilate. So off we went to the hospital—where we began the wait.

The doctor had a ranch where he liked to spend weekends,

BED NUMBER TEN 253

most especially the Father's Day weekend. But Katherine was

stalling, threatening to delay his departure. So, as was common

practice at that time, he induced labor. She was born that Friday

evening, and I had the wonderful, healthy baby I'd planned

for—in time for Bill's Father's Day.

Tonight, I want to celebrate. After all, I brought her into the

world. I have reason to celebrate. But I need only look around

me to realize how foolish an idea that is. Next year, I announce

to myself, we'll celebrate together—{Catherine's birthday and all

these other special occasions. Then I will be home and life will be

normal again—with all of this just a memory.

But for now, Father's Day is just around the corner, and I must

have Mother get something for me to give Bill—some Dutch

cheese, perhaps. He will like that.

"June 22: Sue's birthday! Melancholy. Teary."

—from Bill's diary

It is almost too much all at once—Katherine's birthday, Father's

Day, and now my birthday, my forty-fifth. I am too depressed to

feel anything about my age.

Charles arrives as usual with his early-morning cup of coffee.

"Happy birthday, Sue." He takes a sip from his cup, still smiling.

"You know, of course, that we still do business as usual today."

I knew he'd handle it just this way—pretending to be uncon-

cerned. I also know I need the therapy and will get the full

treatment, every painful move and turn. Not fair!

Still, the second-floor staff members all come in with their

greetings, which is nice. A number of people ask my age, and all

of them express surprise. "You can't be that old," they say. Some

want to know the ages of my children, still not believing I can be

forty-five. I am pale and gaunt, and I don't look forty-five? It is

nice to hear and is repeated often enough that I have to believe it.

But why?

"You don't have any lines," one nurse observes. That can't be.

I had crow's feet and all the typical lines of middle age when I

254 BED NUMBER TEN

was home. In fact, I thought I had more than usual because of

the brutally dry winter air in Holland, where I picked up some

premature lines that never went away.

A mirror tells me that they are telling the truth. All the lines

are gone. All these months on my back have given me a face-lift.

Is there actually some fringe benefit of this terrible disease?

During my morning workout, I try to escape the anguish by

remembering my birthday celebration on the Rhine River—

following our first trip to The Hague—when I had about five

hundred rollicking Germans singing "Happy Birthday" to me

amid the spectacular scenery of the Rhine Valley. Now, here I

am at the opposite end of the spectrum.

Even after lunch, Charles is going through all the usual paces.

Several people stop by to extend greetings—which is certainly

more recognition than I'm getting from Charles this afternoon. I

feel a great burst of self-pity.

Finally he says to Ginnie, "Being the day it is, do you suppose

we should let up on her a little bit?"

"Oh, I think so," Ginnie answers. Elaine has disappeared, so

Charles and Ginnie wheel me back upstairs. There in my room is

a huge decorated cake from Elaine, and all the station nurses are

waiting for me. Yvonne has come in early to join us, and they all

sing "Happy Birthday." Through my tears I smile with love at

their thoughtfulness.

A beautiful nosegay arrives, sent by an acquaintance who has

suffered a great deal of illness and wants me to have something

special on my birthday. Cards, flowers, and plants pour in—and

gifts. Ginnie hands me a folding stained-glass plaque in lovely

shades of my favorite greens. It bears the verse, To EVERYTHING

THERE IS A SEASON, AND A TIME TO EVERY PURPOSE UNDER

HEAVEN. Her gift touches me; again tears overpower thank-

yous. What a lovely reminder that even my life here has a season

and a purpose.

Charles helps me blow out the candles on my cake—I don't

have the lung power to do it alone, but I most certainly want my

birthday wish to come true this year: to go home soon! People

BED NUMBER TEN 255

stop by my room from physical therapy and respiratory therapy,

and even from ICU. The stream continues through Bill's visit

and late into the night.

Finally everything is quiet, and I am ready to sleep. I'd dreaded

this day, but all these people have transformed it into a beautiful

occasion. Unconsciously, I've begun thinking of the staff here as

family; today they let me know I am part of their family, also.

This was a terrible place to celebrate a birthday, but they went

all out to make it a festive day for me. If I have to be sick, this is

the best place to be.

My fingers are not bending, even though I am using the gloves

regularly.

We have just finished afternoon therapy when a man appears,

announcing himself as a "brace man." He exhibits an enormous

pair of ugly metal hand braces. Abruptly, he puts one on each of

my hands, forcing my fingers to bend into the ghastly contrap-

tions. As metal digs into the unyielding fingers, I gasp. These

monsters are so large on my long, narrow hands that they

resemble something more appropriate for the hands of a boxer.

The brace man doesn't say who ordered these treacherous de-

mons, and I am too flabbergasted to think of asking.

"Keep these on all night," are his parting words.

Within the hour I am nearly in tears, but Yvonne charts his

command reluctantly as an order. Fortunately, she has to re-

move the gloves several times during our evening routine, but

each time she replaces them, it is more difficult.

The pain is excruciating by eleven o'clock, when Patti comes on

duty. Painkillers do no good.

"May I read to you, Sue?" Patti glances toward the Bible she

has picked up. "Perhaps we can find solace here." I nod.

Scripture has always comforted me, but not tonight. I try to

listen and concentrate on the words, but they cannot penetrate

my mind.

Once an hour Patti releases the torturous metal gloves for a

few minutes, because she can't bear to watch my suffering. Her

eyes fill with tears each time she has to retighten them. "I wish I

could leave them off, Sue," she says, "but I can't. I could get fired

for not following orders." Sadness dims her attempted smiles.

My agony has become hers.

256

BED NUMBER TEN 257

I would never ask her to remove them. If this is what it takes to

get me well, I will endure it somehow. But I cry all night, and

Patti continues her Scripture readings.

"Those don't fit you, Sue," Bill says when he comes in at seven.

"Look, they don't fit your hands." I can scarcely see anything by

now—my eyes are tired and swollen from tears.

The braces, indeed, are not sized for my hands, and the PT

staff agrees. And, after I get the proper size, they should be worn

only for short periods in the beginning. Why did that man

demand that these be left on all night? To think that all the

agony was unnecessary. Who ordered them and gave him his

instructions? No one seems to know. Tonight, they say, I can let

my hands rest. Are my tears from anger or relief? At least

tonight I can sleep.

As we return from therapy, Dr. Gehrken comes down the hall.

He is an orthopedist who treated the girls and me several times

over the years. A welcome, familiar face! I'd wondered why he

or some other orthopedic specialist wasn't in on my case—to

avoid mistakes such as yesterday's. If nobody else will ask Dr.

Gehrken to work with me, I will have to do it myself.

"Dr. Gehrken, can you do something with my hands?" His

face saddens and his touch is compassionate as he examines my

red, raw hands and the "knuckle-busters," as everyone calls

them. His questions are few.

"You are quite right, Sue. They don't fit your hands. And you

do need something to get those fingers bent." He is kind and

gentle, just as he's always been with us. "Don't you worry. I'll

make you something that will fit and be more comfortable."

Though I am relieved, I still wonder—why did I have to take

the initiative and hire my own orthopedist?

"June 28: Ask Sue about things I should have pushed for."

—front Bill's diary

258 BED NUMBER TEN

The hole in my neck left by the tracheostomy tube is only a

pinhole from the outside, but Dr. Lohmann says scar tissue has

built up inside and it isn't closing naturally. It will have to be

repaired surgically.

"Can they do it in my room, like the draining of my lungs?"

"No, you'll have to go to surgery. It will be a local," he says,

"a very routine procedure. Nothing to worry about."

So much has happened to me already that I am apprehensive.

"Can you go with me to surgery, Elaine, please?" If Elaine is

with me, I know I'll be all right.

Usually private-duty nurses are not allowed in surgery. But

Elaine is resourceful. "I have a couple of friends who work in

surgery. I'll see what I can do."

Elaine arrives for work dressed in her surgical greens. This is

the first time I have seen her without her white uniform. With

her red hair, she looks pretty in green. I feel at ease as she rolls me

off to the operating room.

With the blockage repaired, I am at last able to cough up the

accumulated phlegm. It hurts, but it is a relief. Now it will be

just a couple of days and I can go in the Hubbard tank!

Bill has looked at the tank and neither he nor I can figure out

how I will be put into it. All we can think is that Elaine probably

will have to go in the water with me. If both of us are in wet

swimsuits, it is certainly going to be difficult to dry and dress me.

But my husband has an idea.

Elaine and I stare in disbelief as Bill proudly pulls rubber

waders out of a sack and hands them to her. "These are for

you!" he announces to Elaine. "I got the smallest size they had."

He has been to a surplus store and found the boots that hunters

and fishermen use to wade into deep water. Elaine and I roll with

laughter. The boots would probably be chest-high on a short

man, but tiny Elaine could get lost in them.

Charles makes it clear: "No one but Sue goes in the tank."

Evidently he has a plan, but I still wonder.

Now we have another problem: My old swimsuit is now way

too large for me. I quickly send Elizabeth shopping for a two-

BED NUMBER TEN 259

piece suit that will cover me fully—a tall order, but she finds one,

and I am ready for the tank!

I am excited thinking about that warm bath, but, as with any

unknown, I am also apprehensive. I can't wait to feel the water,

but I worry whether the catheter plug will work as Elaine

explained it to me. I trust her, but I have so many questions.

How much will my bladder hold? For how long? We don't know

how long Charles will keep me in the water. Does she realize this

will be right after breakfast? Do I dare drink juice and coffee?

Do we have everything we need to take along with us?

Charles has decided I should come to PT in my swimsuit. Can

Elaine get the suit on and off my stiff body? After my time in the

tank, Elaine will dry me off and dress me in a screened-off area

next to the tank. Will they have a bed for me to lie on while she

works with me? None of this should be my concern—I can't do

anything but be there—but I feel the need to fuss over every

detail. This is a big unknown.

"July 6: Apprehension. But tank OK."

—from Bill's diary

It's like preparing to go to the beach. Elaine has pulled the two-

piece suit on me, both parts up from the bottom. I can't raise my

arms enough for anything to go over my head. She checks to

make sure I am completely covered by the suit. I am modest

about such things, and thankful the new suit offers the protec-

tion I hoped for. Just being in the suit is a thrill—at last some-

thing other than a hospital gown! It's pretty—black with pink,

green, and yellow dots. I feel dressed up!

Elaine has packed up towels, a shower cap, hospital gown,

brush, and the Foley—to hook me up again as soon as I am out

of the tank.

Charles comes to my room pushing a litter cart like those used

to take patients to surgery.

260 BED NUMBER TEN

"You can't take me down on that, Charles." That looks to me

like a big step backward.

"Sorry, Sue, that's what we have to do." On top of the cart is a

stretcher, which will be used to transfer me into the tank. I don't

like the sound of this at all.

"We'll leave now, Elaine," he says to her as soon as I am

positioned on the cart, "and you just come down whenever

you're ready."

I shoot a glance at Elaine. Oh, no, you don't, Charles. I want

her along with me now. This is as new an experience for Charles

as it is for us. I need the security of Elaine. She packs my

belongings onto the wheelchair and follows us to the elevator.

Charles shows off the now-steaming Hubbard tank and then

straps me to the stretcher. Carefully he and Richard lift the

stretcher off the cart and lower me into the water.

Only a long, throaty sigh escapes my lips as 1 experience the

ecstasy of the warm water covering my body. After all this time,

I must be in heaven.

Just as on the day I first spoke, it seems that the whole hospital

staff is swarming in to look at Sue in the tank—Sue beaming

gleefully.

"Hey, look who's swimming!"

"How's the water, Sue?"

"Wonderful!" is all I can respond.

A doctor saunters in. "Why, there's Esther Williams!" Every-

one laughs. For the moment, that's who I feel like.

For this first immersion, Charles says all I have to do is lie here

and enjoy it, and I do. I don't ever want to be taken out. The jets

propel water at me from every direction. The shower cap flies

off, but I don't care if my head gets wet. Every drop of water

feels magnificent.

During the first days in the tank, we do only the routine move-

ments that Charles and I have worked with on the table—

crossing my arms and then my legs and stomach-muscle exer-

cises. These go much better in the tank. Gradually we begin

more aggressive work. The first time Charles flops me over on

BED NUMBER TEN 261

my side, I am startled. My head is still out of the water, and he is

right here, but this huge tank of water looks different, almost

foreboding from this position. I feel vulnerable, knowing I can't

move anything well enough to swim.

"July 15: Frustrated and depressed again."

—from Bill's diary

As with every high, the low always follows. Again I feel myself

sinking. This illness has gone on too long, and improvement is

less noticeable. Months back, I clung to one thought: Get out of

intensive care and get in the tank and everything will turn

around.

But it isn't working that way. Little frustrations grow into

major irritations. I still can do nothing for myself. Nurses whom

I have cherished as friends become irritating. Having everything

done for me is wearing thin. Every bodily function is tended to

when it suits someone else. I eat when the tray comes, and I eat

what the hospital gives me, spooned into my mouth by someone

else's hand. Time on the commode is assigned. Face washing,

tooth brushing—everything is still done for me. I want desper-

ately to be able to take care of myself.

And I have been away from home too long. Bill and the girls

are getting tense with each other. I have always been the one

who kept things going. Now Bill is having to monitor their

schedules. Tempers flare. He never had to deal with all that

before. I always knew ahead what they had planned and asked,

"Now, what are you going to need for this?" I foresaw problems

so that we wouldn't have frantic, down-to-the-last-minute epi-

sodes. I need to get back home to assume my role again as a full-

time wife and mother. The three months that once sounded like

a life sentence have come and gone. After 7Vi months, I am still

helpless. The hundreds of disappointments are overwhelming

me. In ICU I fought fear and anger. Now I battle depression—

and the constant, demoralizing pain of the gloves, the wheel-

chair, therapy.

262 BED NUMBER TEN

Every morning I wake up dreading therapy—more pain, more

fear, and always more tears. I have never once doubted that

Charles cares deeply about me—after all, he never misses that

early-morning visit with his cup of coffee. But as he leaves, I

know I'll soon be with him in therapy, and he'll be hurting me

again. I can't get well without him, but still there is dread.

Now Charles is prodding me to do more on my own. I am

using every free minute to work myself—trying, trying, and

trying again to push for more movement. Still he demands and

reminds. Why won't my friend believe I am doing all I can?

The summer is dragging on—long and sad.

"July 23: Anniversary. 21 years."

—from Bill's diary

I seek out quiet places in my thoughts to shelter me from the

reality of my life and the desperate sadness of being here on this

special day. So many years ago, our wedding day, yet in my

memories it remains real, warm and lovely. I can still picture

Bill's parents when they arrived in Richmond the day before our

wedding.

I'd never before been around anyone who spoke with a New

Jersey accent. Bill didn't have one. I had met the Baiers only by

telephone; now I was finally meeting them in person. They were

as kind and loving as I knew they would be. But listening to them

talk was a totally new sound experience. It didn't occur to me at

the time that I might sound just as strange to them.

Our wedding was a seven o'clock candlelight ceremony. The

moment came. I clung to Daddy's arm and felt myself tensing

when I looked down the aisle. Then I saw Bill, smiling at me. It

was a beautiful, big smile! I didn't see anyone else in the church.

The service was followed by a reception at the country club,

around the pool. It was a hot, sticky July evening, and the

mosquitoes were fearsome. This was the first time I'd met Bill's

brother-in-law, John. Just prior to our forming the receiving

line, he saw all the mosquitoes stuck in my veil. Off he went to

BED NUMBER TEN 263

find a can of bug spray. We've laughed with him ever since about

the dousing he gave me—such an aroma for a new bride!

Bill came to the hospital this morning early. His smile still

obscures everyone in a room. All I could do was cry. What kind

of anniversary was this? Was I ever going to get out of this

hospital? The day is heartbreaking.

Katherine, Elizabeth, and Lissy have come up with a surprise

for us, a gala dinner party for two. They arrive bearing a cake,

flowers, candles, and fresh, boiled shrimp! After much fluttering

about, setting up our dinner table, the girls and Yvonne leave.

Bill and I are alone in the candlelight for our anniversary dinner.

Their excitement lingers, setting a happy mood. Dinner is lei-

surely as Bill feeds me each tiny bite. Tonight it does not matter

that the chewing is so slow—all the more time to savor the taste

of the shrimp.

It is a night for remembering, and a night for laughter. Simul-

taneously we look at each other and say, "Remember twelve-

and-a-half!" More laughter.

The Dutch make a big occasion of the twelve-and-a-half

anniversary, just in case the couple doesn't make it to the

twenty-fifth. They even have special greeting cards for it. Since

we arrived in Holland just in time for our twelfth anniversary,

we soon learned we had just six months to wait for this unusual

occasion. We did celebrate the anniversary, even though we had

every intention of making it to twenty-five!

It is quiet now. Bittersweet nostalgia sweeps over us. How

very thankful I am for this wonderful man and for our family.

How lucky we have each other, yet how sad that we have to be

here for this day. Bill stays a long time, but the inevitable comes.

As he walks out the door, the tears again flow.

Britain's royal wedding is upon us, and Patti and I are looking

forward to seeing it on television. During afternoon therapy, I

hint to Charles, "Are you going to stay up tonight and watch the

wedding?" I want him to tell me I can stay awake for it.

"No, I'm not interested in anything like that." He may well

264 BED NUMBER TEN

have guessed why I am asking, and he certainly knows that I'll

be useless in therapy without a night's sleep. Permission is

denied by omission.

At eleven, Patti comes on duty. She has been to a pastry shop

and bought an assortment of little tarts. The box is tied daintily

with a silk ribbon. She has china cups and saucers and special tea

bags. She is excited; we are going to have a tea party and watch

the wedding of Charles and Diana.

I hesitate to tell her. "Charles doesn't want me to stay up and

watch. I'll just have to see it tomorrow."

Patti is crestfallen. "Oh, Sue, come on. This is the only time

they're ever going to get married. You've got to see it tonight,

live."

But therapy is too difficult now. Charles would know imme-

diately if I had no sleep, and it would be very rough. Patti will

have to do it without me.

I have her hook up the pillow speaker so she can listen by

herself, but I know how disappointing it is for her to have to

watch it alone after all her plans.

"You have to turn me during the night, anyway," I remind

her, "so, how about doing it when they get to the altar?" She

giggles at our little conspiracy, and we watch the wedding vows

together. I won't mention this to Charles.

Tension is building with Elaine. Her personal life has become

very stressful and is getting the better of her. Here with me, she

has begun a crusade to get me doing speech therapy because a

friend of hers suggested it. Charles sees no need for it, and no

doctor has mentioned it or ordered such therapy. And there

certainly isn't time for any more activity in my day. In the midst

of all this, I am again becoming restless about my progress.

Elaine has the most difficult shift—intense, so much to do for

me, and always rushed. She never wanted to work days, agree-

ing to it only because of me, and I have always appreciated that.

But after all this time, I can see the hours are getting to her—

along with problems she has had with her boyfriend, a burglary

at her home, plus two car accidents. She has reason to be touchy,

BED NUMBER TEN 265

but these problems are interfering with her work. Bill has in-

formed her that she must stop pushing for speech therapy. It is

evident we are approaching a parting of the ways.

Elaine pauses in our routine. She barely looks at me as she

speaks. "Sue, this is my last day. I won't be here tomorrow." I am

shocked into silence. Panic seems to choke me. She turns my

chair abruptly, and we are in the hall. Everything whirls by.

Should I try to dissuade her? Can I? I have seen this coming for

weeks. Now I am afraid it has gone too far. I feel numb.

The elevator is crowded; no place for conversation. Anyway,

I can think of no words to say. The hallway into PT swallows us.

As soon as we arrive in the therapy room, she is gone and I am

terrified. Another unknown. Elaine has been the mainstay of my

days. Now what? Charles tries to be reassuring. I am disconso-

late.

Bill also reassures me that this was inevitable. We will get an-

other nurse. Still I am frightened. Anxiety overpowers me. My

fingers are numb and then my legs. What is happening to me? I

dare not sleep. Is everything shutting down again? I pray and I

cry. What are we going to do? Sleep finally quells my terror.

"July 27: Guillain-Barre syndrome coming back!"

—from Bill's diary

I awake early to fear. The numbness is still here. This can't be

happening again!

It is morning. Who will be my nurse? Who will come? Just

before seven, the door opens.

"Marjean!"

"Surprise! You're stuck with me."

"I don't understand. What are you doing here?"

"I just took my last final exam at school yesterday, so I'm your

new day nurse. It will work out beautifully for me."

For her! This has to be a miracle. Nothing can make me

happier. For the moment, I am too excited to remember my

numbness.

266 BED NUMBER TEN

Word soon comes from Dr. Lohmann. No, it is not a return of

the Guillain-Barre. Anxiety has produced the attack of paralysis

and all I need to do is relax. With Marjean as my nurse, that will

be easy.

The numbness is gone in a few days, as Dr. Lohmann pre-

dicted.

I have been forgetting to ask Kathleen about Judith, her cohort

of Christmas Day. All of a sudden Judith walks into my room.

"I'm so glad to see you again, Sue," she says. And I am so glad

to see that lovely, kind face again! "Look at you, sitting up!

When Kathleen and I worked with you that day, we didn't

believe you'd ever get up again."

"Where have you been all this time?" I ask.

"I've been out with back surgery, but now I'm OK and I'll be

looking after you, I assure you." She is the other head nurse on

the second floor, along with Kathleen. Finally I will be able to

tell her how much her lullabies meant to me that desperately sad

Christmas morning.

Kathleen and Judith continue to stop in often. We are becom-

ing friends. Kathleen is a tease, and she starts prodding me.

"Kick me, Sue," she says. "Come on, kick me." I try to get my

foot up high enough, but can't quite make it. "I won't believe

you're going to walk until you can kick me."

"Don't worry, I'll kick you one of these days."

Everyone knows I love animals. Several nurses have brought in

pictures of their pets, and in PT Richard talks often about his

dog. But what a surprise when his roommate slips the little

puppy through the side door of the therapy department.

I run my stiff, awkward fingers across that little ball of fur.

Such a joy. He is a cinnamon-colored terrier, small and precious

as he snuggles in my lap. Everything seems calm and peaceful as

I look into that beguiling face. All the pain of the therapy

evaporates. The puppy licks my red, swollen fingers, seeming to

BED NUMBER TEN 267

sense the pain as he spreads his warm, soothing ointment. I am

pleased I can give something back—a warm, loving embrace.

We are both contented.

"August 1: Buy toy for Richard's dog."

—from Bill's diary

Summer is waning, and the girls talk of school again. We must

have Lissy's luncheon before she heads for college. It will be one

last gathering of friends before the older girls leave town. Plans

are set for eight girls, and we decide on the menu, place cards,

and flowers. Elizabeth paints flowers on a small mason jar and

fills it with blue and yellow daisies. Lissy will have the jar as a

keepsake.

Katherine has arranged to get a ride back to Vanderbilt, and

Bill will ship her stereo and other bulky items by bus. I should be

going shopping with her for the clothes she needs, but I am not

going anywhere—except to therapy.

My left leg is improving, but the quadricep muscle on the front

of my right thigh is not developing, and I need it if I am going to

walk. Charles has started using a kind of saddlebag to hold

weights that I lift with my feet, in an effort to strengthen the legs.

We started with simple leg lifts, then the empty bag, and now I

can lift two pounds with my left leg. But in my right leg I have no

capability to lift or support anything.

"A normal, healthy person should be able to lift ten pounds

each time," Charles informs me. That is a measurable goal, and I

am going to do it. Whenever I am lying on the mat or table

resting, I work my legs, making myself raise them. I watch when

hip patients work on their lifts across the room. If they can't do

what I've accomplished that day, Charles looks over at me and

smiles. My determination increases. I will get to ten pounds, in

both legs!

268 BED NUMBER TEN

I watch Charles spread a double sheet on the floor of the therapy

room. What now? He is always trying something new.

"All right, Sue. Today we're going to roll." I look at him

skeptically. I can't even turn over on my side in bed. "You've got

to learn how to roll."

Down we go onto the sheet. The floor has only thin carpeting,

and it is very hard. Charles pushes me over and over in one

direction, and then back in the other. With each turn, every bone

in my body seems to grind into that hard floor.

He gives me a push. "Now you do it."

I thrash out with an arm to maintain the momentum. When I

manage to flop over, I crumple in exhaustion.

"Go on, Sue, keep going."

Again he pushes and again I drag or throw myself over, only

to collapse once more. My lungs cannot support breath for this

much exertion.

"Don't stop. Keep going."

"I can't. I have to rest."

"You can rest later." And again he pushes.

If I come to a stop on my stomach, I can't breathe. In terror, I

claw wildly and dig into the floor to push myself over.

For several days we continue, and I become covered with

scrapes and bruises at every pressure point. Finally he lets up.

Now I can practice turning over in my bed—and I will do this,

along with all my other exercises, faithfully. I will do anything it

takes to get out of this hospital!

My bruising is a repeated problem and a constant frustration to

Charles. It isn't that he doesn't believe me; he can see I bruise

easily. But he is annoyed with anything that interferes with my

doing what is necessary to get me back to normal. Bruises and

blisters interrupt the plan. Where can we go from here? What

can we substitute?

Alone with Bill, I cry in desperation, "There are so many

dumb things I can't do! Things I've always taken for granted,

now I can't do them!"

BED NUMBER TEN 269

With everything new we try, I become conscious of muscles

that are needed and aren't there. When Charles finds a missing

muscle, one I need for the next step, he adjusts therapy to work

on restoring it—and then another and another. Muscle evalua-

tions are done regularly to analyze the level of return and what

remains to be done.

We've only been guessing how much I weigh. Bill says he'll bring

in our bathroom scale and weigh me as soon as I can stand

alone. My next goal!

I know I am all grins when I walk with Charles holding just

one arm—another milestone. As we near the table again,

Charles steps in front of me, takes both of my arms, and steadies

me. Oh, dear. Now what ? Slowly he lets go of one arm, then the

other. I am standing alone! I am so wobbly and excited, I will

surely knock myself over. The whole world seems to stop; no

time, no sound. Just Charles and me standing here facing each

other with enormous grins. More tears of joy. So few muscles

and no balance, but I am standing—for a full minute. Finally he

grabs hold of me, and all the PT staff is here, sending up an

enormous cheer! Like a news flash, the word goes out: Sue stood

alone! The whole hospital seems to celebrate.

Bill happily brings in the scale and plops it onto the floor in

front of the wheelchair. He and Charles get me positioned and

steadied. Then they let go. I can't look down; I am afraid to

move even my eyes for fear of losing my balance. So I wait for

the report.

One hundred pounds! I must have gained back fifteen

pounds. We are moving forward.

"August 26: Katherine back to school. Sue sad."

—from Bill's diary

September marks more accomplishments to celebrate. My right

270 BED NUMBER TEN

leg is making progress. I can now walk with Charles holding my

left arm. When lying down, I can lift both knees together.

Charles decides it is time for me to transfer myself from the

table to the chair. He stands beside me reassuringly, telling me

what to do, one move at a time. I am very uneasy.

"Come on, Sue, you can do it." Always those familiar words.

Marjean nods her encouragement.

I think out each move carefully and then do it. Finally, I get

myself into the chair!

"See, you did it!" Again the huge grin. This is a biggie, my first

move toward independence.

As I congratulate myself, I see that look again in Charles's eyes.

"OK, Sue, back on your feet." He steadies me and swings over

to my side, turning back to smile at Yvonne as he speaks.

"Yvonne, you can push the chair upstairs, but Sue and I are

going to walk back."

He's got to be kidding. I am still walking only across the

room, and even after so short a distance, I am completely

winded and damp with perspiration. The idea of walking all the

way to my room is incredible.

"We have all afternoon, Sue. No need to hurry."

There are lots of stops, as I stand and try to catch my breath,

but I only get a minute to rest. Then it is onward. Charles lets

Yvonne push the chair behind us, in case my legs give out

completely. How I want to sit down and rest. But he won't allow

that. There are railings along the walls, and I try to grab them

for added support, but he keeps them out of reach. "That's not

necessary. You've got me."

At times I am sure my feet cannot take another step, and

Charles practically drags me, but on we go. I am thankful for the

elevator. At least there I can stop and lean against the wall.

Finally we make it to my room, and I know then that I will

never again get a ride back from therapy. We have done it once,

and Charles will not let me backtrack.

Each new effort brings more aches. Muscles are developing. I

am aware of each one as it adds to the soreness of its pre-

BED NUMBER TEN 271

decessors. Dear Bill has bought me an electric massager. At the

end of our work day, I tell him where it throbs most, and he

massages away the tension. Oh, Bill, if only I could ease your

frantically busy life and massage away your tension.

To compensate for my foot-drop, Charles has been taping my

shoes to my legs at a ninety-degree angle. Dr. Gehrken saw me

walking in therapy and has ordered leg braces. Before the braces

can be fitted, however, we have to contact a specialty shoe store

for shoes to attach the braces to. New shoes!

But these are not the graceful, feminine shoes I have always

loved. The salesman shows up with unattractive, clunky ox-

fords and smiles politely as he asks whether I want black or

brown. I don't want either. Reluctantly I choose brown. They

are horrible and much too wide, but the salesman assures me I

need the extra looseness because of the braces.

Here I am, getting the most expensive shoes I have ever

owned, and they are also the homeliest things in the world. And

they are especially "fetching" with my hospital gown and long,

skinny legs!

Bill tries to cheer me by telling me they look good. He proba-

bly is pleased that I am finally getting some sturdy shoes. Bill

always prefers the practical. I found that out soon after we were

married.

At the time of our wedding, I had a proper trousseau, which

Bill assumed would take care of my clothing needs for many

years. We were married in the summer. That fall, Bill had the

opportunity to attend a meeting in New York, and I was to go

along so we could visit his family.

Mother was excited for me. "We must get you some clothes

for the trip!" That sounded logical, so she and I shopped, and I

bought a couple of new fall outfits.

Bill was less than pleased about my shopping spree.

"Why do you have to buy new clothes to go see my family?

That's not necessary." Bill didn't understand the significance of

seasons in a woman's wardrobe. He had always been very

conservative; his clothes were good, but not abundant or varied.

Dealing with women's clothing was a very new experience. He

272 BED NUMBER TEN

had quite an education ahead of him. And he was certainly put

to the test when he learned that his bride had difficult-to-fit

feet—long and narrow, a combination that always seems to

translate into expensive! For this reason, Mother had taught me

early in life that I'd have to go to shoe sales to afford shoes that

fit. But here we are, paying full price for these dreadful clodhop-

pers I am now modeling—with Bill's smiling approval!

To make matters worse, Mother joins in. "Why, Sue, the color

is really very nice."

"September 15: Left leg lifting four-and-a half pounds. Right leg

nothing. Shoes seem OK to me. Sue—Too wide."

—from Bill's diary

In spite of their appearance, the braces and shoes are going to be

helpful in walking. However, Charles has had to add four

insoles and heel pads, plus layers of padding in the arch, to make

the shoes, with braces, snug enough to stay on my feet.

To celebrate the new braces, Charles takes me outside for a

walk on the patio. It is a lovely day to be out, although I am

nervous trying to navigate in these clumsy boats. At one end of

the patio is a little gazebo with two seats in it. Charles decides

this is a good place to rest. It means climbing two steps—my first

attempt at stairs. As I try to lift each foot, with two pounds of

shoes and braces added, I scrape the toes of both shoes.

Charles is delighted that I've managed the steps. The scratches

on my shoes are of no consequence to him. But my world has

become so small that I am distressed. Imagine! My expensive

new shoes have scuffed toes!

Yvonne now has me sitting up on the side of the bed for dinner.

It is good exercise for all my torso muscles. As she begins feeding

me, the phone rings—a call from her husband. She turns away

to speak with him.

I study the fork and wonder whether I can pick up the fork

and put something in my mouth. I concentrate and slowly wrap

BED NUMBER TEN 273

my limp hands around the fork. With all the effort I can muster,

I spear a green bean and get it to my mouth. Such a triumphant

feeling! I rattle the fork on a dish to get Yvonne's attention so

she'll see the bean in my mouth. We laugh and cry with childish

enthusiasm. A little thing that means a lot to both of us; another

beginning; significant progress toward self-sufficiency.

The time surely is coming when I will eat a whole meal by

myself.

"September 21: Sue happy, Charles back."

—from Bill's diary

Charles went on vacation again, at the administration's insis-

tence. They knew he needed a break from the intensity of my

therapy. I, too, needed a vacation, I decided, but no chance! I

had hoped JoAnn would allow me a bit of a break from

Charles's strenuous workouts. No luck. She kept up the pace

every single day.

Charles's smile is particularly welcome this morning. I have

missed my friend while he was gone. Along with the familiar cup

of coffee, he is carrying a shopping bag; in it, he says, is some-

thing for me.

I struggle to open the package by myself, another accomplish-

ment. Inside is a lovely fringed shawl. I am too touched to speak.

I can only smile through tears.

Many days I have dreaded seeing this man, knowing he would

hurt me. I have shuddered at his frustration when things haven't

come back as fast as hoped, or there hasn't been a muscle where

we have needed one. But through it all, he has been a dear, caring

person, a very good friend. Wrapped in this shawl, I feel sur-

rounded by his loving friendship.

Two hours later, when I arrive in PT, it is business as usual. Or

perhaps not so usual.

Today it is a walker. Charles steadies me upright and then

places my hands on the sides of a walker. This is scary.

"Come on, Sue, start moving," Charles urges.

I flash him a doubtful look. I am wobbling and my fingers

cannot curl around the support bar so I can grasp it. My hands

274

BED NUMBER TEN 275

become slick with perspiration. No way can I lift that walker to

take a step.

Charles wraps elastic bandages around the smooth bars so I

will have some grip. Around my waist he tightens a wide strap,

which he holds taut so I can't fall—like a fledgling circus per-

former learning a new stunt.

"Now you don't have any excuses. Get walking."

I pick up the walker and take one step and then another. In

spite of my shakiness, exhilaration forces a third and then a

fourth. I really am walking, and I am just a bit closer to doing it

alone.

My next assignment is to walk the halls of the second floor

over the weekend. With the security of the nurses holding that

strap behind me, I slowly inch around the corridor. On orders

from Charles, another nurse follows us with the wheelchair, so I

can stop and rest when I can go no farther. After making three

stops the first day, now I can do the whole circle without sitting.

It won't be long, Charles promises, until I graduate to Canadian

crutches, those short metal sticks that encircle the lower arms so

they can't be dropped. I am eager.

Thanks to Marjean's experience in occupational therapy, she

constantly comes up with new ways to make me more self-

sufficient. She and the supply department locate a double-han-

dled cup, and I begin drinking unassisted. She pads my tooth-

brush handle so I can grasp it and make it move in my mouth.

The Foley catheter is finally removed and my kidneys and

bladder work perfectly. Each morning it is a toss-up whether

Marjean should first take off Dr. Gehrken's painful hand braces

or bring me the bedpan.

The PT staff is not beyond bribery. Charles has worked me

particularly hard today. All the other patients have gone when

JoAnn appears.

"Well, we're ready to order ice cream," she says to Charles. "I

guess we'll have to get some for Sue."

276 BED NUMBER TEN

She turns to me. "If you promise to stay here and to feed your-

self with a spoon, we'll treat you." That sounds like a fine idea.

"What flavor do you want?"

This is the first time I've ordered ice cream in nearly a year,

and my mind scrambles for names of flavors. I settle on peanut

butter. Of course, Charles keeps working me relentlessly all the

while they are gone. When they return, he sets me up and they

form a circle, all watching me. This is the first time most of the

physical therapists have seen me eat. And I eat every bite, with

much cheering support!

This same night I get my first hamburger. It is sloppy, with

everything falling out of the bun, but it is a burger! And I lift it to

eat the first few bites unassisted.

Firsts are coming faster now. My first shower is heavenly, as is

my first barbecue—another mess, but delicious. And my first

conversation with Gary Stiller.

As he talks, I begin to get an entirely different picture of this

man. We talk about his educational background, about his

being required to live in a wheelchair for part of his training.

"Trying it is never quite the same as the real thing," he tells

me, "because you know that at the end, you're going to get up

and walk out. But it did make me appreciate what could and

couldn't be done."

He explains different muscles and how they work. He seems

to want me to know that he cares and understands, that he has

been aware of what I have been going through. Eventually, he

mentions not spelling with me.

"Was I wrong, Sue?"

"I thought so." I feel no animosity as I tell him. The clash of

wills has passed. There is nothing more to be said about that.

But I am touched by the expression of sadness in his face. He did

care.

October 10 is Mother's birthday, and I decide to surprise her.

With much effort, I pick up a pencil and position it in my hand.

With the eraser, I slowly punch the numbers on the phone. I am

so excited when I hear her number ringing. It seems as if she's

BED NUMBER TEN 277

never going to answer. But she does, and I sing "Happy Birth-

day." Mother can't even talk. She just cries.

The time has come to give up the tank and concentrate on

walking—sad news indeed. That water felt so good, no matter

what mashing and twisting Charles did when I was in it. Even

my hands felt wonderful when I could put them in front of the

jets after having them in the braces all night.

"Sue, there aren't enough hours in the day to do all that needs

to be done," Charles explains. "We have to get you walking if

you want to get out of here."

I sense progress when I walk around the second floor in the

evenings and on weekends. Bill often accompanies me and

watches happily as each tentative step grows a little stronger.

The exertion is also helping build my lung strength—I can make

the journey now without stopping to rest.

"September 28: Home visit for Sue? Who approves? How?"

—from Bill's diary

Marjean first raised the question of a weekend pass in mid-

September.

"Dr. Lohmann, don't you think it's about time Sue tried a

home visit?" He'd have to think about that. A week later, Bill

asked Gary Stiller about the possibility. We were very disap-

pointed with the response.

"He says to forget it," Bill reported. "This hospital doesn't do

that anymore." But Marjean continued her encouragement, so

Bill has brought the matter back to Dr. Lohmann.

"There's a committee that meets the first Monday of the

month," Dr. Lohmann says. "They have to make the decision.

I'll present it if you wish."

"Yes," Bill says, with me nodding as vigorously as I can.

Marjean adds fuel. "Sue's been here nearly ten months. She

needs to try living at home before she moves out permanently."

Dr. Lohmann will check on the pass.

278 BED NUMBER TEN

The first week of October comes and goes, and the ball is

being tossed back and forth. Dr. Lohmann asks Dr. Gehrken.

The orthopedist says he will ask Charles, and Dr. Lohmann

promises to speak to Gary. Everyone is passing the buck. But

Marjean keeps prodding.

By mid-October, every time Dr. Lohmann comes in to see me,

Marjean reminds him. "What about a pass?" Down in therapy,

she presses. "Charles, when are we going to get Sue out of here

for a home visit?" She lobbies my case everywhere.

"October IS: Going home up to us?"

—from Bill's diary

I am weary of waiting for permissions. I want to get out of the

hospital.

Bill is worried. "Sue, we're getting all excited talking about go-

ing home," he says, "just like we got all excited about getting you

out of intensive care. But remember, I do have to go to the office

every day. At this point, I don't know if the insurance will pay for

home nursing, or what we can work out." But all Marjean and I

are pushing for right now is a weekend home visit.

Charles, on the other hand, has decided I should get out of the

hospital altogether.

"You can come in as an outpatient and continue therapy, Sue.

You need to get out of here."

Marjean, though, is determined that I need a weekend pass as

a trial. As for the future, she casually mentions, "You know,

sometimes I do home duty work."

The time is not appropriate to discuss this possibility, but her

feeler does not go unnoticed. Wouldn't it be great to have

Marjean at home with me until I complete my recovery?

"October 20: Talk to Lohmann/Gehrkeni'Stilleri'Charles, et al.

What is Sue's plan?"

—from Bill's diary

BED NUMBER TEN 279

"OK. You want to go home." Bill looks tired tonight. His tone is

serious. "How are you going to get to therapy? How are you

going to take care of yourself when Elizabeth and I are gone?"

Once again Bill confronts me with realities I do not like to face. I

will have to find solutions to these problems for myself. But his

predictable, realistic questions are a downer.

However, to keep me from getting too depressed, Bill casually

drops a little teaser before leaving. "When Katherine called last

night, I told her to make hotel reservations for Parents' Weekend

next spring. Think you can make it?"

Boy, will I! We had to miss it this year, but I'll definitely be

ready next spring!

Word finally comes. I am to have a weekend pass, starting at

four-thirty Friday, October 23.1 will return on Monday morn-

ing. I can't wait!

"October 21: First steps without crutches. Pay bills, make bed-

sofa, get firewood, water plants. Buy yellow ribbon."

—from Bill's diary

Four-thirty has turned into six o'clock. That is the earliest Bill

can get to the hospital to pick me up. I hate losing ninety minutes

of my weekend, but Yvonne makes the time pass quickly as she

dresses and primps me. I choose a pair of jeans with an elastic

waist. At least they won't fall off me. After Yvonne dresses me,

she circles me, checking me over. When she sees how baggy the

jeans are in the seat, she bursts out laughing. I have only reached

106 pounds, and every time I sit on a hard surface, I know a

good portion of my weight loss must have been in my seat!

Yvonne can't stop giggling. Fine friend! But I laugh, too, pictur-

ing my baggy rear.

Promptly at six, we are down at the main door with all of my

paraphernalia for the weekend, and Bill pulls up. I am so excited

I can hardly breathe. It is a cool twilight, beautiful. I inhale the

fresh evening air and feel free! As Bill and I pull away from the

280 BED NUMBER TEN

curb, Yvonne waves. Again the tears, and the haunting thought

that I have to come back Monday. Tonight, Sue Baier, you must

forget that. You're going home!

Evening comes as we ride, and the night lights look different,

unreal. The last embers of sunset turn new glass office buildings

into rosy monoliths. We are traveling a route that is unfamiliar

to me, but it is the trip Bill has made so often. Once we draw

close to our neighborhood, I recognize landmarks. But so much

has changed—I've been away from the world for almost a year.

Finally we are in familiar territory, passing the service station,

our pharmacy, and the grocery store, and then approaching our

street.

As we come around the corner, in the last glow of dusk, I see

home. That first glimpse is breathtaking. And then I see the big

tree in front of the house. Can I believe my eyes? That big tree is

wrapped in yellow ribbon!

Tears flood me. What a fantastic sight! Bill slows in front of

the house to allow me to feast on the sight before we turn into

the driveway. His hand reaches out for mine. "Welcome home,

Sue." The most beautiful words I've ever heard.

As the car stops in front of the garage, Elizabeth comes

rushing out the door. "Welcome home, Mother. We're so glad to

have you back." I can't speak. It's too overwhelming.

I feel strange walking in through the kitchen door. The house

smells different, feels different. I've lived here for many years,

but now it all seems strange.

"Where's Tiffany?" I can't wait to hold my cat, but she runs

from me. Rejection! After all this time, she doesn't remember

me.

A welcome-home banner hangs on the mantel in the family

room, opposite the kitchen.

I can't believe I'm here!

Bess has brought dinner—standing rib roast, fresh green

beans, and baked apple strips. A fantastic meal. As Bill and

Elizabeth prepare to serve, I sit at the breakfast table watching

them.

My eyes dart around the room, taking in everything. A room

that you've known but haven't seen for a year is very different.

BED NUMBER TEN 281

Bill and the girls have been doing things their way, rearranging

things to suit them or just leaving an item where it happened to

rest. My African violets haven't been turned regularly. They are

all growing in one direction, toward the window. I see leaves

that need to be pulled off. My eyes can't go fast enough for me to

take it all in.

It is heavenly to sit again at our table for dinner with Bill and

Elizabeth. Afterward, we move to the family room. I am begin-

ning to feel at home.

Finally Bill says, "It's bedtime, Sue." I am too keyed up to be

tired.

"So early?"

"It's not early, and tomorrow is another day." He pulls open

the Hide-A-Bed in the family room, our bed for tonight. Unfor-

tunately, all our bedrooms are upstairs. This will be a new

experience for both of us.

As Bill turns out the light, everything feels suddenly strange.

Total darkness. But then I feel Bill next to me, and I know I am

home. My heart overflows as his hand cups mine.

"This isn't going to work," Bill announces. I know what he

means; neither of us was able to sleep last night. I've become

accustomed to a hospital bed, which can be adjusted to elevate

my head and my knees slightly. Since I can move very little, these

adjustments are important for making me comfortable. I also

know Bill wasn't able to sleep on the Hide-A-Bed's uncomfort-

able mattress. Every time I moved, he woke up.

"Tonight we're going upstairs," he says. I'm not too sure

about that. I haven't worked on stairs in therapy. I remember the

two steps up to the gazebo when I scuffed my shoes.

When evening comes, Bill repeats, "We have to get you up-

stairs."

"All right." I've been planning this throughout the day, and I

am ready.

Because Charles taught me to raise myself with my arms, they

are the strongest parts of my body. "Remember when I sprained

my ankle so badly a few years ago? Rather than go up the stairs

with my crutches, I went up on my bottom."

282 BED NUMBER TEN

Bill's eyes light up. "Why not?"

Going up works beautifully. I hoist myself with my arms, a

step at a time. But I haven't figured out how we'll get me on my

feet again at the top of the stairs. I don't particularly want to

spend the night sitting on the top step.

But Bill brings a chair, and together we pull me up onto it, and

then into a standing position—I'm exhausted, but ready to go.

Walking into our bedroom is worth the effort. This room, at

once so familiar and so different, is like a mirage. The vision is

distorted, changed in ways that can't be pinpointed. Flashes of

that last day, as I left for the hospital, jar me. Is this real? Or is it

all just a dream?

"It's all right, Sue," Bill says. "We made it."

Yes, finally, I am back in my own room—our room.

The bed is still not the hospital kind, but it is much more

comfortable than the Hide-A-Bed. Tonight we sleep.

The return on Monday is rueful. I don't want to go back, yet

there is a sense of security once I pass through the hospital's

double doors. There will be another weekend pass on Friday. It

won't be long, I tell myself. It won't be long until Friday.

Charles checks on the problems of the weekend. "I hope you

didn't use the crutches very much."

"I didn't use them at all."

"You must not rely on the crutches."

"Charles, I didn't use them." Bill left them in the closet all

weekend. I used the walls, the drainboard, the couch. There was

always something close by to steady me.

When I tell Charles about going up the stairs on my seat, he

announces a new challenge: climbing stairs.

After therapy, Charles heads me toward the stairwell, rather

than the elevator. Then he literally drags me up two flights of

concrete stairs. What an ordeal! As we start, I know we'll never

get up the first flight, let alone the second. My left hand tries

unsuccessfully to grasp the rail, and Charles holds me up on the

right side.

"Come on, Sue, another step," he says. "Lift your feet." My

BED NUMBER TEN 283

worthless fingers slip on the railing, and I scrape the toes of my

shoes with every step.

"Don't keep worrying about your shoes. You have to learn to

climb stairs. Come on, lift that foot. Now lift the other one."

By the time we get to the first landing, even Charles is

breathing hard, and we are both dripping with perspiration. But

he won't give up. He drags me the rest of the way. Finally we

open the door and walk out onto the second floor. Everyone

stares at us. We are flushed, panting heavily, soaking wet, and

exhausted. But Charles is smiling proudly. "Sue walked upstairs

today." Walked is hardly the word, but the staff loves it. There is

cheering and clapping.

From then on, we do this every afternoon. Charles stands at

the foot of the stairs, smiling and rubbing his hands together.

"Are you ready?" he asks.

"Well "

"Good. Let's get going."

And the same thing always happens as we open the door to

the second floor. I stand there red-faced and dripping wet,

gasping for breath, and the nurses cheer. These people! How

supportive they are.

We also walk more and more every day. Now I have to do one

round of the second floor before breakfast. Sometimes during

therapy Charles takes me on his rounds. He walks me to the

respiratory department, sits me down to rest, then takes me to

the other end of the building and plops me down again to rest.

He is determined to build my stamina and lung power. It is

always exhausting—the physical exertion of trying to make the

body move as well as the nervous tension.

Friday comes quickly. This time it feels different. The house is

familiar, comfortable—it is home again. Everything goes more

smoothly. We've learned from the previous weekend and are

starting to develop a routine. For the first time in eleven months,

I can use the bathroom in privacy! Someone has recommended

using the walker, turned around, with the crossbar at the back of

the toilet seat and the hand pieces coming forward on either side

for me to grasp. This allows me to raise myself alone.

284 BED NUMBER TEN

Monday morning, we are back at the hospital at eight-twenty. I

feel tears coming. I don't want to be dumped here! I want to go

back home.

The week is going slowly. I am ready to go home permanently.

We must develop a plan for my discharge. I can't stand living

like this any longer.

Finally, Dr. Lohmann and Dr. Gehrken agree to write letters

to the insurance company, indicating that I can be released from

the hospital but will require a day nurse, five days a week, to

handle my personal care and therapy, and to take me to the

hospital regularly for PT. Marjean announces that she will be

my home nurse.

"Don't you want to think about this, Marjean ? It's going to be

a much longer drive."

"No, Sue, it doesn't matter. I'd come to you anywhere."

Now I know we can work things out. Everything is set—well,

almost everything. We wait for the insurance company to ap-

prove our plan. I am more than ready to go, but Bill continues to

caution me.

"Don't count on this, Sue, because it's liable to fall apart," he

snaps his fingers, "just like that. If the insurance company

doesn't approve this, you stay here. You know I have to go to

work."

I glare at him. I don't need this lecture right now. I have to get

out.

"November 5: Go home in one week. Charles all smiles. Sue

took evening walk without crutches."

—from Bill's diary

One more weekend visit. This time I can relax. Everything is set

now.

Near home, Bill stops at our pharmacy. "I have to pick up a

few things. Want to come in with me?"

Why not? I have to start someplace. This is the drugstore

where the girls worked during the summer. The owners had

BED NUMBER TEN 285

surprised me by bringing me a plant on Easter morning, when I

first moved into my private room. In fact, it was the very first

plant I received, so it was very special. I want to thank them

personally.

With my little crutches, and a big assist from Bill to get me out

of the car, I hobble into the store. This is familiar turf.

Fortunately, the store is nearly deserted. Mr. Lewis is behind

the prescription counter. As I walk through the door, he looks

startled, then he runs up front and grabs me. All these years, it

has been, "Hello, Mr. Lewis," and "How are you, Mrs. Baier?"

But now he is embracing me with genuine warmth. His wife

comes to see what is causing the excitement, and she, too, hugs

me enthusiastically. It is a wonderful moment, my first public

appearance. I know now that I belong back in the world.

In the pharmacy, how I looked was inconsequential, but Bill is

pushing me to go on to the grocery store with him. Here I feel

self-conscious. This is where everyone in our subdivision shops.

Fortunately, I don't see any of my neighbors tonight. Bill wraps

my hands onto the grocery cart for support, and off we go. At

each aisle, Bill leaves me standing and scurries after whatever we

need. I make it all around the store, but by the time we reach the

checkout counter, I am exhausted. I've always taken this store

for granted—now it is much bigger than I remembered. Getting

around it is an accomplishment I hadn't expected.

During the week, everything has been falling into place for my

release. Marjean will be my nurse and Yvonne is to be her

backup. Dr. Gehrken approved a chart of therapy procedures

for Marjean to put me through each day. She will bring me in to

outpatient PT three days a week for evaluation of our proce-

dures and progress.

Friday the thirteenth is to be my lucky day! Now I am sure it is

going to happen. There will be no backfiring this time. I am

going home for good.

A huge, lovely cake arrives in my room at noon, and word

spreads throughout the whole hospital: Sue is serving.

Staff members swarm in. I feel blessed with so many good

286 BED NUMBER TEN

people who care about me—such an enormous family. They are

all proud of me, and I am grateful to them.

I watch for someone to come from ICU, but of those who

cared for me, no one is left or on duty. The rest all come,

however—the second-floor nurses, respiratory people, PT, jan-

itors, and cleaning women. The air-conditioning man stops by,

and the staff from the pharmacy. Bill smiles quietly as Patti

presents him with another of her little cards. Then he holds it up

for me to read: Accept a Miracle!

This is a splendid send-off, a tearful outpouring of love. All

afternoon they come. The public relations people snap pictures

for the hospital newspaper. Sue Baier is one of their own.

It is strange as we drive down the street toward home. Tonight is

a monumental occasion—exciting and very happy. I am remem-

bering the original homecoming with the yellow ribbon four

weeks ago. Now that seems only a dream.

This feels normal. A normal homecoming. I am here to stay!

The hostage of Bed Number Ten is home. I am no longer the

patient. Now, at last, I can begin rebuilding my life—as Bill's

wife, as Katherine's and Elizabeth's mother, as Sue Baier, per-

son. This is a night for joy and thanksgiving.

Praise ye the Lord. O give thanks unto the Lord; for he is

good: for his mercy endureth for ever.

EPILOGUE

Five years after leaving Gulfland Hospital, I continue to surprise

myself, Bill, and friends with my progress. Today I can use

muscles that seemed useless even six weeks ago.

But the struggle back to recovery has been long and tedious.

Five years ago, when I arrived home, I was barely walking

without crutches in the house. I could not raise myself from

anything but the toilet seat and a chair at the breakfast-room

table. I could not take care of my personal hygiene or dress

myself. Like a small child, I was beginning everything anew—

and with the same impatience.

With Marjean's help and encouragement, I faithfully fol-

lowed a regimen of therapy each day, including regular visits to

the hospital for additional workouts and testing. Marjean's

background in occupational therapy proved invaluable. She

helped me grow more self-sufficient and taught me that I could

do anything I set my mind to accomplish.

We all anticipated the holidays with a new enthusiasm that

November of 1981. The girls' Christmas party was approaching,

right on schedule. While I could only supervise the preparations,

I no longer had to send home lists spelled out from a hospital

bed. I was writing the lists myself and seeing to their execu-

tion—even buying the special dripless candles I wanted for

decorations.

En route home from one of our first trips to outpatient

therapy, Marjean drove up to the store where I always bought

those special candles. She walked around the car and opened the

door for me. I was too embarrassed to face this elegant environ-

ment, but Marjean was insistent.

"Come on, Sue. I know you'll feel better when you start doing

for yourself anything you want to do."

287

288 BED NUMBER TEN

It was an ordeal for Marjean to maneuver me out of the car

and pull me upright, but we forged ahead. An attractively

dressed saleswoman watched my awkward entrance into the

store and graciously offered me a straightbacked chair. As I

struggled with my billfold to pay for the candles, she waited

patiently and then smiled with genuine warmth.

"My dear, I don't know what you've been through, but it has

taken a lot for you to come in today," she said. "I just want you

to know how much I admire you for doing so."

What a welcome to the world! I knew I could go anyplace I

wanted to go from then on.

Christmas took on new meaning. The music, the decorations,

the sounds of laughter pressed haunting memories into the silent

crevices of fleeting apparitions. Christmas night of 1981 ended

as all such days should, with just Bill and me lingering over the

splendidness of the day.

The first Sunday I was home, we sent flowers for the church

sanctuary, a token thank-you to the St. Philip family. On New

Year's Day an informal church service was offered in the fel-

lowship hall, rather than in the main sanctuary. We felt that this

was the right time for me to rejoin the congregation. We slipped

quietly into the last row of seats, just as the service began, so

most of those gathered did not know I was there. I was joyful to

be at worship again with Bill. Tears glistened in his eyes, too.

When the service ended, the loving excitement of the entire

congregation enveloped us. It was another emotional home-

coming.

The continued outpouring from the St. Philip community

began to concern us. The food kept coming. One day the door-

bell rang, and it was Ruth bringing dinner.

"Really, Ruth, this is getting embarrassing," I told her. Just

then Bill came through the hallway carrying a load of laundry.

"Honey, until that man is living a normal life again," she said,

"we will continue doing entirely as and when we please."

With Marjean directing my days, there were always compro-

BED NUMBER TEN 289

mises and modifications, but few limitations. Lunch out, after

workouts with Charles, became a special treat. We carefully

chose quiet restaurants with inconspicuous booths. Eating was

slow, sometimes messy, and many foods still had to be cut into

bite-size pieces for me. But it was a treat to be back in the

mainstream.

Soon after we began venturing out, Marjean brought me a

gift—a blue pillow to match our car. She carried it everywhere

for me. It was months before I had enough of my own "pad-

ding" to do without it in public places.

My knuckles were so stiff and swollen that I couldn't wear my

rings yet. It was especially disappointing not to be able to wear

my wedding ring. So Bill sent me to buy myself a plain gold band

to wear until my own rings could slide over the knuckles again.

The clerk in the store put the new band on me, but it wasn't

official until Bill placed it on my finger that night. Now that I can

at last wear my original rings, I also wear that little gold band. It

doesn't match my set, but it is priceless to me.

True to his promise, Bill took me to Parents' Weekend at Van-

derbilt in early April. I was more than he bargained for, I'm sure,

since I was still frail and unsteady. Moving around on unknown

turf, I realized for the first time how handicapped I was. Yet the

students and other parents accepted me. Some acted as if they

didn't notice; others openly cheered me on.

Therapy evolved as I developed more muscles. From in-

creasingly strenuous floor exercises and clay modeling for my

hands, we graduated to the swimming pool. Our wonderful

neighbors turned their pool over to me. Marjean warned me

that she couldn't swim, but she could get me in and out if I could

handle myself in the water. I was confident about that.

Being back in the water was all I'd dreamed it would be. Every

move was easier and more sure in the water. JoAnn gave us a

book of water exercises, and I could feel myself progress in the

pool.

290 BED NUMBER TEN

By May I felt ready to resume control of my life. The time had

come to go it alone, without a nurse. I could maneuver around

the house quite well. And, thanks to Mar jean's training and

constant encouragement, I could handle much of my own rou-

tine personal care, plus simple tasks around the house. I could

get out of high armchairs alone and stand up by the side of my

bed.

I also knew I could drive my car if I had to. Bill had taken me

with him when he did some errands one Saturday. He pulled

into a large, half-empty parking lot, leaving me in the car. While

he shopped, I tried the key in the ignition. It took some doing,

but by using both hands, grasping the key between the thumb of

one hand and the forefinger of the other, I could turn on the

engine. When Bill returned, I was ready for the next step. "I

want to try driving."

We practiced there in the parking lot, and, after putting me

through a trial run, Bill announced, "I think you're ready to

drive." I knew I was, and that represented the ultimate indepen-

dence. Katherine and Elizabeth would be out of school soon, to

help me regain confidence behind the wheel. But knowing I was

able to do it was a big advancement.

One morning soon after, Marjean called. Her car was not

working. I assured her I'd be fine alone. The next morning,

Marjean reported that the car was still not repaired. There was a

pause, and then it came.

"I think we've both known this time was coming, Sue. To

make it easier on both of us, should we just make it today?"

We both did, indeed, know. The time was right.

Walking was still laborious, much harder than driving. In the

car, braces gave my right leg the needed stability for accelerating

and braking.

I couldn't lean over, so Bill asked me what I would do if I

dropped the keys while trying to unlock the car door. I wouldn't

be able to pick them up.

"Well, that's going to be my problem, isn't it?" I replied. I just

had to move ahead and assume that those things would not

BED NUMBER TEN 291

happen. I always carried spare keys, but if I dropped those, I

might have to ask a bystander to pick them up. Asking for help

had to become a way of life.

The first time I went alone to the grocery store, the man who

had always bagged my groceries became very protective. He was

careful to put just a few items in each bag, realizing that at home

I would be on my own getting them out of the car. I had to

balance myself and pivot down and around to pick up a sack.

My arms were strong enough, but my legs had problems with

balance.

It troubled me that Bill was still doing the laundry, so, to

surprise him one day, I decided to strip the bed and change the

linens. I couldn't bend over, so at each corner, I dropped to the

floor and dragged myself up again to go on to the next corner. I

removed the sheets from one, rested, then did another, and then

started over again with the clean linens. It was a tremendous

ordeal. Finally, I stuffed the sheets in the pillowcase and threw

them down the stairs. After all that, laundering them was easy.

At last Bill was free of laundry detail!

I still experience insecurities with balance when I face a step with

no support. In April 1983, I got overzealous and stepped up a

curb without anything to hang on to. Down I went, breaking my

elbow. That injury set me back and seemed to depress me almost

as much as the original illness. I had been going with such a full

head of steam that I couldn't accept being incapacitated again.

But my friends wouldn't let me wallow in my misery. They were

back again, taking me everywhere to get me over that temporary

hurdle. That accident, however, did make me cautious about

falling.

Dr. Gehrken's hand braces finally did what they were sup-

posed to do. The fingers bent at the knuckles. Now I do exercises

to restore the muscles that will allow me to straighten them or

move them into any position, and they are improving. Some-

times clerks in a store are uncomfortable when I try to write a

check in my awkward way. If it upsets them and they want to

take over, I simply say, "Thank you." I understand they mean

292 BED NUMBER TEN

well. I'd rather allow someone to do what they feel good about

doing than to embarrass them. If I handle a situation well, it

helps me ultimately.

Even after five years, I cannot get up on my knees from the

floor and stand up without support. I can wiggle my toes, but

they do not curl under for balance. Nor can I stand on my toes,

except in the pool. I still wear simple, plastic braces that fit into

different shoes, but Charles has assured me I can throw away my

braces as soon as I can lift my toes and turn them under. At

home, I now walk without any braces. Another beginning.

I still have problems eating lettuce or foods that crumble. I do

not eat soups in public because I cannot clean off my lips with

my tongue.

I ride the exercise bicycle a mile every day. The timing de-

pends on where I am in the book I'm reading while I ride! I spend

at least twenty minutes on the floor, working my whole body.

And we swim for an hour every evening, weather permitting.

There are days when I still feel sorry for myself for things I

cannot do, but then I remember where I've come from. I do not

consider myself handicapped any more. I enjoy the good aching

that accompanies development of each new muscle. I'm con-

scious of everything new I learn to do and congratulate myself

on each new accomplishment. I continue to celebrate the reality

that with the help of God, my family, my friends, and the

support of an entire church congregation, I am leading a normal

life—an extraordinary life!

On February 14,1984, Sue Baier returned to the intensive care

unit of Gulfland Hospital for the first time since her discharge.

There were no familiar faces—only nurses who had heard about

the woman with Guillain-Barre. It was a strange and eerie walk

to Bed Number Ten. No patient occupied the cubicle. Sue

moved slowly into the area, touching the bed, a darkened

monitor, and a curtain that held no greeting cards, staring

momentarily at the clock on the wall and the nurses' station.

Flashes of sadness, frustration, terror, reflected in her eyes.

BED NUMBER TEN 293

Quietly, Sue gave the cubicle one last look and the bed one

more touch, and she walked slowly toward the door.

A patient was rolled into ICU, a very ill patient. Nurses

scurried to attend to him. Sue stopped at the door and looked

back once more. The new patient was being put in Bed Number

Ten. A long look, a deep sigh, and Sue Baier turned again and

walked through the door—to sunshine, to freedom.

fhvalua6fe messages ... for anyone taking care of others."

New England Journal of Medicine

"...A PAGE-TURNER."

-The Kansas City Star

Bed Number Ten

The first symptoms were upsetting, but not particularly frightening: a tingling in her

toes, a burning sensation in her mouth. But only forty-eight hours later, Sue Baier - a

Houston housewife and mother of two teenagers — was completely paralyzed, unable

Jo move anything but her eyelids. For the neat four-and-a-half months, utterly helpless,

uaable to speak, dependent for every breath on a respirator, blanketed by pain and fear,

^he4ay immobilized in an Intensive Care Unit, suffering the most terrifying of

imprisonments in bed number ten.

5u£_Baier was the victim of Guillain-Barre' syndrome, a disease once mistaken for polio

and thought to be linked to swine flu shots — and one that while paralyzing every

-muscle in Sue's body, left her mentally alert and all too able to feel pain. This is her

story — an inspiring account of one woman's struggle to overcome horrendous incapacity.

-Itjs-a tale of cruel indifference, as health care professionals ignored her needs, often

.treating her as if her mind was as inert as her body. But it is also a tale of loving support

as compassionate staff, loyal friends, congregants from Sue's church, colleagues from

"her community groups, and, of course, family— her mother, two daughters, and most

especially her selfless husband — rallied to her aid.

"Above all, it is a tale of enormous courage, tenacity, and faith in the face of overwhelming

adversity. Today, twenty years later, Sue Baier stands as a beacon of hope to those who

suffer from this catastrophic disease.

For anyone who has ever been a patient in a hospital, Sue Baier's story will strike

sympathetic chords. And for the families and friends of hospitalized patients, her unique

view of the inner workings of an intensive care

unit provides invaluable guidance to giving — —

essential support and encouragement to their

loved ones. Honest and unflinching, her

narrative offers rich new insights into how we

can best protect and care for all patients.