“No,” he answered, “I don’t think that’s it. Just rest and don’t worry.” He sounded his usual cheerful self, as if he weren’t a bit worried at not having arrived at a diagnosis. His manner seemed to tell me that he was doing his job, and I should stick to mine.
I couldn’t believe it. He was actually expecting me not to worry about a strange disease that left me helpless? If no one knew what it was, then how could it be treated? I barely managed to hold back the tears until he left the room.
A day or two later Dr. Lipsitch swept into my room with a broad smile. He seemed pleased about something, and came over to my bed and took hold of my hand. This was certainly not his usual procedure. Wasn’t he going to give me the muscle tests today, I wondered?
“Your fever has dropped this morning,” he said, smiling warmly down at me. The tone of his voice, and the thought that perhaps this strange illness was at last relaxing its grip, made a surge of emotion shoot through me and tears spring to my eyes.
“From now on,” he continued, “you’ll stop getting weaker and start getting stronger.” He seemed so sure of what he was saying! The relief of it made me unable to say anything. Then he gave my hand a reassuring squeeze.
“We didn’t want to tell you until your fever had gone down. What you’ve had is an attack of polio.”
Chapter Three
The Unthinkable
The sun was streaming into my room. The rooftops of Neuilly were sharp against the sky beyond the garden. But my mind reeled instantly from the assault of the word Dr. Lipsitch had just uttered.
Polio . . . the terrifying disease that struck every summer back home in Michigan . . . danger lurking in swimming pools and movie theaters . . . paralysis . . . wheelchair . . . braces . . . iron lung . . .
Polio . . . a grade school friend rushed to the hospital . . . then confined to a wheelchair . . . even months later, thin, tired, trembling. Wasn’t I trembling all the time, too?
Polio . . . a playmate of my little brother’s . . . suddenly in an iron lung, then out again. But when he’d come back from the hospital he was weak, and cried at the slightest thing. Wasn’t that a description of me?
Polio . . . trying to get the newly approved vaccine just before I left for Europe, but being told to come back later, as there were only enough supplies for children . . .
Dr. Lipsitch was still giving me his incongruous smile as these appalling thoughts reverberated through my brain.
“People are afraid of the word polio,” he said. “That’s why we didn’t want to tell you until your fever had gone down.”
“When did . . . you know . . . ?” I managed to say.
“I was fairly sure when Carol Stein called me from Fontainebleau. That’s why I had you brought to the polio wing.”
The polio wing! He had known right from the beginning? And he hadn’t told me? Cheerfully, smilingly, he had chosen the moment of revelation?
None of this could be real, could it? He was standing here telling me I’d had polio, but the sun was still bright and he was still smiling and I was still me, somewhere underneath the weakness and the trembling and the weepiness. My polio must be different from anyone else’s polio.
In the midst of this unreality, one all-consuming question was pushing its way into my consciousness. I was afraid to ask and yet was compelled to do so. I couldn’t conceive of a negative answer.
“I’ll be . . . able to . . .” I hesitated. I had been going to say “play the piano,” but Dr. Lipsitch jumped in with his own interpretation.
“You’ll be able to walk out of the hospital when you leave.”
Walk? It had never occurred to me that I might not walk again. That shocking thought crowded out everything else for the moment.
The doctor went on. “You’ll be weak for a while, but from now on you’ll start getting stronger again. You’ll be able to live a normal life.”
He gave my hand another reassuring squeeze. That must be the answer to my question. A normal life was piano playing and a concert career. So this “weakness” must be temporary?
As I look back on that morning, I wonder what was in the doctor’s mind. Was he trying to reassure a weak and still very ill patient that life would go on? Preparing me for a gradual letdown rather than giving me a sudden shock? Or had he not taken in the fact that I was a concert pianist?
Did Dr. Lipsitch see me as lucky that I would be able to walk with only slightly paralyzed legs? And did he view the more severe paralysis of my back, abdominals, shoulders, arms, and hands as less important? I had told him I was a concert pianist. Didn’t it occur to him that my entire piano-playing apparatus had been destroyed?
All I know is, from that moment on, a giant misconception began to form in my mind. I was only too eager to believe that it would be just a matter of time before this “weakness,” as he insisted on calling it, would go away and allow me to continue.
I believed, or was encouraged to believe, that the continuity of my life would not be broken—that my polio was somehow different from anyone else’s and that I would be able to resume life as usual.
As Dr. Lipsitch went on to give me the muscle tests that morning, it suddenly occurred to me that the “good” punctuating every test was merely a formula to reassure the patient. How had I failed to recognize it?
I had even suspected that he might be giving me the tests for polio. And yet the “good” had reassured me, just as he had intended. I had thought I was passing his tests with flying colors. He had almost given himself away with his surprise that first day when he tested my abdominals. His sharp glance at me belied the “good,” and yet I had dismissed it.
How ironic that even as I lay there, concentrating on the tests and feeling stupid that I hadn’t guessed, I was accepting a much larger deception: that soon the muscles would be truly “good” once again.
Martha came in that day while the nurse was feeding me and offered to take over. We didn’t like to talk in front of the nurses. She had been told the news already, but had not been all that surprised.
“There’s been a respirator sitting outside your door almost from the beginning,” she confided. “Doctor Lipsitch asked me not to mention it to you. I shuddered every time I looked at it.”
I marveled at all this secrecy. “I wonder . . . if I’d have . . . guessed . . . if I’d known . . . about the . . . respirator.”
“I don’t know. They certainly tried to throw you off the track.”
“Especially . . . the night nurse . . . when she . . . got so angry . . . when I said . . . paralyzed.”
“I don’t think she was angry, Carol. I think she was frightened. After all, she had her orders not to let you know, and there you were, talking about paralysis.”
“This may . . . sound strange . . . but you know . . . it’s a relief.”
“To be able to talk about it?”
“Well, and . . . to know . . . that they know . . . what it is. I was afraid . . . I’d just . . . keep getting . . . worse and worse . . . and they’d . . . never find out. . . .” That thought, and the relief, made me start crying again.
“My God, Carol, were you that worried?”
I jerked my head down and then back up. I couldn’t really nod anymore. The motion just wouldn’t go smoothly.
“Why didn’t you tell me?” she said.
“I didn’t want . . . to worry . . . you.”
Martha was so surprised that I’d been thinking of her in the midst of all this that her little frown almost disappeared for a moment. I had a sudden urge to laugh through the tears. I tried not to, because it never came out as a laugh anymore. My abdominals were so weak that they wouldn’t separate a laughing sound into a “ha-ha,” and the result was something like a strange, inhuman cry: “Haaaaaaaaaaaaaaaa,” a semi-wail.
Almost worse than having no laugh, though, was having no cough. I had never realized that you needed core muscles to cough. Without them you feel that you are about to strangle, and all you can do about it i
s a weak little “aaaaaaa.”
“You know . . . I’ve got to . . . tell my family . . . somehow.”
“Don’t worry. Mademoiselle has already sent them a cable.”
“A cable? But that’ll . . . frighten them!”
“She said she would word it so that it wouldn’t be frightening.”
I wasn’t to know for some time about the cables that whizzed back and forth while I lay in the hospital. Mademoiselle tried to be reassuring, but my parents were spending many a sleepless night trying to decide if they should come to Europe or have me flown home. In spite of this, the letters from my mother were calm and cheerful.
Now that the fever had dropped, I was allowed out of bed when the nurses changed my sheets. They would help me up and put me on a chair with armrests, where I had a different view of the garden. I shivered with pleasure to be sitting up again, even for a few minutes.
One day I was wheeled to the scales to be weighed. A nurse propped me up just long enough to get a reading. I had lost sixteen kilos, she said. Let’s see, sixteen kilos would be about . . . thirty-five pounds! That couldn’t be right! I had been in the hospital only ten days. And after that first day, with the help of the nurses, I had eaten everything that had been brought to me. It didn’t make sense.
But on the way into my room we passed a mirror that I couldn’t see from my bed. One glance was shocking. The face that looked back wasn’t mine; it bore no resemblance to the one in the mirror at the Hôtel d’Albe. It was thin and drawn, and its white emaciation was covered by an angry red rash.
Once back in bed, I thought about the strange face in the mirror. Could all that muscle jerking and twitching have melted off thirty-five pounds?
I didn’t yet know about muscle atrophy: the shriveling and wasting away of muscle tissue whose motor neurons have been permanently destroyed by polio. I didn’t know that the weight loss was a telling measure of the atrophy my muscles had undergone. My understanding of any of this was far in the future.
Now that the fever had dropped and the danger of contagion had passed, I had more frequent visitors. No one commented on my appearance, and my fog made me forget about it most of the time.
One day Marge wrote a letter to my parents, partially dictated by me. We presented the story of my illness as if I would soon be up and pursuing my normal activities. I wasn’t really kidding them. I was kidding myself.
Martha and I were already talking as if I would be playing again in no time. I asked her to bring in my copy of the Mozart sonatas. She helped me prop up the sheet music so that I could see the first two pages. This was better than reading! It took so much effort to reach out and turn each page that I soon tired of reading and lost concentration. But I could just lie there with the sheet music in front of me and learn the music one phrase at a time. That way I wouldn’t need to turn pages very often.
The nurses noticed this unusual activity and must have reported it to Dr. Lipsitch.
“Well, I hear you’ve been practicing Mozart!” he said, the next time he came in.
“I thought I . . . might as well . . . be learning some . . . new repertoire.”
He smiled, but his next words were a surprise. “I think we’d better wait a while for that,” he said easily.
That seemed strange, but perhaps it was simply a little early for me to begin “doing” anything. I did have one question, though.
“How soon . . . will it be . . . until I can . . . start playing . . . again?”
“Oh,” he said casually, “it won’t be too long.”
A warm feeling flooded through me. When I had asked earlier how soon I could leave the hospital if I had someone to take care of me, he had said “not too long.” When I had pressed him for an estimate of time, he had said he would release me to the right convalescent situation in a week or so. Perhaps, therefore, “not too long,” when it referred to my playing the piano again, was also only a matter of weeks.
When I search now for clues to the source of that extremely unrealistic attitude, I think not only of the doctor’s evasiveness, but also of my life experience at the time. I thought I knew about illness. I had had chickenpox, scarlet fever, flu, and had been sick for as long as six weeks. But at the end of the acute stage of any of those illnesses, I soon functioned normally.
I knew, of course, that polio was far more serious. I was frightened and shocked at the very word, but also puzzled. I didn’t know what had happened to me. And the doctor’s false reassurance—his attempt to portray my condition as something temporary—kept me from knowing what I probably didn’t want to know, anyway.
I still slept fitfully because of the pain throughout my upper body. Gradually I began to recognize that the pain and trembling were related to muscle weakness. I didn’t dwell on the fact that the pain was there no matter what I did or didn’t do. I had to try to put things into a frame of reference I could understand.
Lifting a very heavy weight, I reasoned, made normal muscles shake a little. The next day those normal muscles would be sore. Now my muscles, in their severe state of weakness, were straining in a similar way to do the simplest things: to maintain a sitting position for a few minutes, even when I leaned back against something; to try to turn my head even slightly when someone came into the room.
A good example was my effort to lift a fork. When the nurse would bring a tray and raise my bed to a sitting position, I would first anchor my forearm on the tray, then lower my head a little and simultaneously raise my hand a little so that food met mouth. It wasn’t easy, since both head and hands were trembling with the effort. It was as if the fork weighed fifty pounds.
Another challenge was the ordeal of getting my digestive tract to function properly, despite the laxatives I was fed at every meal. While I had been confined to bed, I had blamed the problem on the bedpan. But now, I was beginning to recognize that it was due to the lack of abdominal muscle. After the nurse had helped me over to the toilet in the corner of my room, I would strain and tremble with effort, trying to dig my elbows into my belly to push muscles that wouldn’t contract. But my arms were too weak to be of any help. And my back was so weak that it was hard to keep my balance.
One morning while I was sitting there, weeping as usual from the effort and the frustration, Dr. Lipsitch and his group of interns swept into the room. He caught sight of me.
“Oh, is our girl busy?” he joked. “We’ll come back later.”
It was humiliating that they had witnessed my failure to perform such a basic function, and symbolic of my feeling of helplessness.
I was becoming more and more determined to leave the hospital, so Martha and Marge and I began mapping out our strategy. Now that it was merely a question of recuperation, of gradual regaining of strength, we reasoned, why did I have to stay in the hospital?
Why couldn’t I lie in bed back at Fontainebleau, where my room was already paid for, and there were friends who could bring meals and help with everything the nurses could do for me? Marge and Martha were traveling to Paris much of the time anyway. Wouldn’t it be easier for everyone if I went back to Fontainebleau?
We put together our case, and Martha and I presented it to Dr. Lipsitch one morning.
“We could move Carol into a room on the first floor,” she assured him. “There would be a bathroom just outside the door, so she wouldn’t have to walk very far. Marge and I would be in the room with her, so there would be someone around all the time. And there are several of us who could easily take turns bringing Carol her meals.”
“I know I’ll . . . get better . . . faster . . . there,” was my contribution.
Dr. Lipsitch looked a little surprised and amused that we had it all worked out and were pleading so strong a case. He laughed and shrugged his shoulders.
“Well, I guess I can let you go if you will promise just to rest in bed until I see you again.” He went on to say that I would have to be brought back to Paris every week or so for him to check my progress.
I prom
ised to do nothing but rest. I would have promised anything to get out of the hospital.
The day I was to leave, Martha brought me a skirt and blouse to put on. As she helped me into them, we were surprised at how much too big they were. Strangest of all were the shoes. When she put them on for me, I was reminded of the feeling I once had as a small child when I had put my feet inside my father’s shoes. They had felt amazingly big and also very heavy. Now my own shoes felt as if they had lead weights on the soles, or as if they were glued to the floor.
When the hospital doors opened and I was wheeled to the waiting car, it felt as if I were being released, not only from the hospital, but also from illness. This must be the end of illness and the beginning of Life as Usual.
The brightness outside was dazzling, and the green everywhere sent shivers up my spine. I don’t know if it was an especially brilliant day in Paris, or just my state of mind, but as we drove slowly back to Fontainebleau, everything seemed to spring at me in its clarity.
It reminded me a little of the time I had first put on glasses when I was eleven. My vision had been deteriorating so gradually that I hadn’t recognized the blurring until a teacher at school suggested that I should have my eyes tested. The day I walked out into the sunshine wearing my new glasses, the leaves on the trees had startled me with their clear detail, just as they did today.
But today it was not only the leaves on the trees. Everything I saw seemed to have an exaggerated effect on my emotions. Maybe the polio had intensified every experience, pleasurable or otherwise. Perhaps I couldn’t take anything in stride. In stride, I thought, and tried to keep from laughing my semi-wail. It would be a while before I was striding.
Chapter Four
To Play Again Page 3
