Small Steps Read online

  “Where do you take the bed, to burn it?” I asked.

  “The beds don’t get burned. They get sterilized.”

  “Why couldn’t my bear be sterilized? Why do you have to burn him?”

  She didn’t answer.

  I was rolled down the hallway to my new room, which I shared with a little boy in an iron lung. His name was Tommy, and he was eight.

  All I could see of Tommy was his head, which stuck out from one end of the iron lung and rested on a canvas strap, much like a small hammock. A mirror over his head allowed him a limited range of vision, but he was unable to see me.

  I was glad to have someone besides adults to talk to, but I wished Tommy were closer to my age, and I wished he were a girl. Since I was not able to get out of bed, I had to use a bedpan. I didn’t want to do so with a boy in the room.

  Tommy told me that lots of people were able to breathe by themselves after being in an iron lung for many months. He was sure this would happen to him, too.

  Tommy’s iron lung made a soft swoosh, swoosh noise as it helped him breathe. I found the sound soothing and went to sleep that night pretending I was ina log cabin on a lake, listening to waves lapping the shore.

  In the morning I lay quietly, trying to match my breathing to the rhythmic swooshing of the iron lung. As I did, I welcomed each breath I took, grateful that it could enter my lungs without assistance.

  5: Hot Packs

  On my first day in the new room, I grumped to Dr. Bevis that the worst part about being paralyzed was that I couldn’t paint my toenails. What good, I asked, was a life without painted toenails?

  I don’t know what made me say such a thing, since I had never painted my toenails before I got sick. Maybe I just wanted handsome Dr. Bevis to notice me.

  The next day, Dr. Bevis marched into my room and whisked the covers off my feet. Without saying a word, he took a bottle of bright red nail polish out of his pocket. I was astonished.

  “Where did you get nail polish?” I asked.

  “I bought it.”

  “Why?”

  “My favorite patient says life is no good without painted toenails.” He sat beside me and painted each of my toenails.

  I felt like a princess. He had bought nail polish just for me. I was his favorite patient! Instantly, I developed a serious crush on Dr. Bevis.

  When he finished, he said, “Now I want you to do something for me.”

  At that moment, I would have flung myself off the Golden Gate Bridge if he had asked me to.

  “What do you want?” I asked, wondering what I could do for him in my condition.

  “I want you to get well. Someday, I want to watch you walk.” He looked directly into my eyes. “Will you do that for me?”

  “Yes.”

  “Good,” he said. “It would make me very happy.”

  I promised him, and myself, that I would do it. Somehow, some way, I would get well. I would walk for this man who had painted my toenails. For days I insisted that the nurses let my feet stick out from under the blankets so I could admire my beautiful toenails.

  Dr. Bevis’s visits quickly became the highlights of every day. I tried to remember every knock, knock joke I’d ever heard so that I would have something to tell him. I wanted to make him laugh, and I also hoped to make him stay in my room longer.

  When I couldn’t remember any more knock, knock jokes, I began to make them up. I spent hours thinking of puns and figuring out ways to use them. My favorite was:

  “Knock, knock.”

  “Who’s there?”

  “Wendy.”

  “Wendy who?”

  “Wendy toenails are painted, de patient gets well.”

  Dr. Bevis groaned, but I could tell he liked it. Tommy liked it, too.

  I asked my parents for a radio because I missed hearing my favorite program, the “Lone Ranger.” They bought a small portable radio, and at six-thirty that night, I asked one of the nurses to tune in the “Lone Ranger” for me. As soon as the familiar theme song began, Tommy let out a whoop of glee.

  “Oh, boy!” he cried. “We get to hear the ‘Lone Ranger’!” He said he used to listen to every broadcast before he got sick.

  The nurse placed the radio between my bed and Tommy’s iron lung so we could both hear. When our hero called to his horse, “Hi-yo, Silver! Awa-a-ay!” Tommy and I yelled, too. From then on, I called Tommy Tonto, the name of the Lone Ranger’s companion, and he called me kemo sabe, which means faithful friend. We sometimes listened to music, too, or the “Archie Andrews” show, but we could hardly wait for six-thirty on Mondays, Wednesdays, and Fridays so we could hear the “Lone Ranger.” It felt good to have something to look forward to again.

  We could not look forward to a fast recovery, for there was no medicine for polio. The doctors hoped to minimize its effects, however, with the Sister Kenny treatments. These treatments, named for Sister Elizabeth Kenny, the Australian nurse who first used them, consisted of two parts. The first was hot packs, and I had begun getting these twice a day in isolation, as soon as my fever broke.

  For this part of the treatment, I lay on my stomach, dressed only in underpants. Because my shoulder muscles were so weak, a rolled-up towel was put under each shoulder to keep them from becoming too rounded.

  Then a nurse wheeled a big metal tank filled with steaming water up to my bed. The wheels squeaked and rattled across the floor as she approached, sounding like a freight train approaching its station. She put large gray woolen cloths in the hot water and then lifted them out with tongs so she wouldn’t burn her fingers. She flattened the cloths in a wringer attached to the side of the tank, removing most of the moisture. The steam from the cloths filled my nostrils; I grew to dread the smell of wet wool.

  As the hot cloths came out of the wringer, the nurse laid them across my bare back and the backs of my legs and arms.

  The first time I had a hot packs treatment, I thought the nurse had made a mistake and heated the water too high. It felt like the hot packs were burning all my skin off. I screamed and cried, even though the nurse assured me that I wasn’t being scalded. She said the water had to be that hot in order to help me.

  After a few minutes, as the hot packs began to cool, they felt good because the warm, moist heat helped my tight muscles relax.

  When the cloths cooled to lukewarm, they were removed, and a fresh batch of hot packs was laid across my back, arms, and legs. This went on for an hour, with the nurse taking the steaming cloths from the hot water, wringing them out, and plunking them on my bare skin.

  Each time a cool cloth was removed, I closed my eyes and braced myself for the first searing moments of the next hot one. The backs of my thighs were particularly tender, and every time a hot pack was laid there, I was sure my skin was being blistered and burned.

  On my second day of treatment, I asked, “How many more times do I have to get hot packs?” I thought the hot packs were like medicine—take two times a day for seven days, and then it would be over.

  “Oh, the hot packs continue as long as you’re here,” the nurse said as she plucked another steaming cloth from the boiling water.

  That could be weeks, I thought. Months, even.

  “Of course,” she continued, “hot packs are only one part of the Kenny treatment. As soon as you’re out of isolation, you’ll get the second part.”

  6: Torture Time

  “Stop!” I cried. “It hurts!”

  Part two consisted of special exercises. During the acute stage of polio, when the patient has a fever, frequent spasms tighten the muscles. Those muscles must be gradually stretched back to normal before they can regain strength.

  After I was moved out of isolation, I had my first physical therapy session. Immediately after my morning hot packs treatment, a physical therapist turned me onto my back. She grasped my right ankle with one hand, put her other hand on my right knee to keep my leg straight, and raised my leg until it was straig
ht up from my stomach.

  Because the big hamstring muscles in the backs of my legs were so tight, it was painful to hold my leg in that position, even after the hot packs.

  I begged the therapist to stop, but she held my leg firmly upright. “I’m only trying to help you get well,” she said.

  At last, she put my leg down—and immediately grasped the other leg and stretched it. I couldn’t kick or pull away from her hands. My mouth was my only defense, and I used it, shrieking and crying.

  “Stop that,” she snapped. “You should be ashamed, making such a scene.”

  I stopped yelling, but I wasn’t ashamed, and I couldn’t control the tears that streamed down my cheeks.

  “This is even worse than the hot packs,” I complained when she finally put my leg down. “At least the hot packs feel good part of the time, after they cool off a little. The stretching exercises hurt all the time.”

  “Be grateful you are here at all,” the therapist told me.

  After she left, I told Tommy her name was Mrs. Crab. From then on, that is what we called her.

  “Mrs. Crab never had polio,” I said. “She doesn’t know how much it hurts.”

  That afternoon, Mrs. Crab came again. I groaned and said, “It’s Torture Time.”

  Tommy giggled and repeated my comment to all of his nurses.

  From then on, my muscles were stretched twice a day. Another exercise that I hated was one that stretched my hamstrings and my back at the same time. For this one, I was pushed up until I sat upright in bed, with my legs out in front of me. The bottoms of both feet were placed flat against a board at the foot of the bed. Then Mrs. Crab put her hand on the back of my head, held my chin to my chest, and pushed my head down toward my knees.

  The pain began at the back of my neck and ran all the way down my spine and along the backs of both legs. Each time Mrs. Crab pushed, I thought I could not bear it. Then she pushed harder.

  No one ever explained the purpose of these stretching exercises to me. Mrs. Crab said, “This will help you get well,” but I didn’t understand how, and I wasn’t willing to take her word for it. All I knew was that twice every day my body was forced to move in ways that hurt.

  Each time Mrs. Crab pushed my head toward my knees, I groaned louder. The more I complained, the more she belittled me.

  “You’re acting like a baby,” she said, “instead of a big girl, twelve years old. Look at little Tommy, lying there in an iron lung. You don’t hear him crying.”

  “You aren’t stretching his hamstrings,” I said. “He’s perfectly comfortable.”

  “You should be glad you’re well enough to get therapy,” she replied. “You should thank me, instead of crying all the time.”

  “Thank you for torturing me,” I said.

  She pushed my head down an extra inch. I was sure my spinal cord would snap in two if she leaned any harder.

  Perhaps Mrs. Crab expected me to act more mature because I was tall for my age. At twelve, I had already reached my full adult height of five feet, eight inches.

  But I had led a sheltered life in a small Midwestern town. Television was not yet common, and the only movies I had seen were Bambi and half of Snow White. (My parents had to take me out in the middle of Snow White because I was so frightened of the witch.) Except for having my tonsils out, I had never been away from my parents overnight. Because my grandpa lived with us, I had never even stayed with a babysitter. Now I was far from home, in pain, and scared.

  Dad had to go back to work, and since visiting hours (Sundays only) were enforced after I was out of isolation, Mother went home with him. Austin was one hundred miles from the hospital in Minneapolis. Mother and Dad planned to visit me each Sunday, but they were no longer my daily support system. I was on my own in dealing with Mrs. Crab.

  By then, I knew that my chances of moving normally again were slim. I remembered the stories about polio epidemics that I had heard before I got sick; I recalled the pictures of polio patients in wheelchairs and leg braces. At least they could use their arms and hands; I couldn’t even do that.

  When I asked the nurses questions about my future, their answers were vague. “Each case is different,” one told me. “We can’t know for sure what will happen.”

  Although nobody came right out and said I would not get better, I sensed that the staff had seen many patients in my condition who remained paralyzed, and this terrified me. My parents and Dr. Bevis stayed optimistic, but I suspected they were only trying to keep me from panicking.

  Part of every day was taken up with routine care. Dr. Bevis checked me twice a day. Hot packs and stretching exercises lasted an hour and a half each morning and again each afternoon. My sheets were changed daily, and the nurses took my temperature regularly. I was fed, turned, and bathed.

  Still, the days seemed endless. I had plenty of time to lie there and worry. I thought about my school, which was a three-story building that had no ramps or elevators, only stairs. How could I finish school in a wheelchair?

  What will happen to me? I wondered. I loved animals and books; I wanted to be either a veterinarian or a writer, but either profession now seemed beyond reach.

  I thought about how our family veterinarian lifted B.J. onto the examining table for his checkups. It seemed unlikely that I would ever be able to lift so much as a pet mouse.

  Writers must be able to hold a pencil or use a typewriter, and I could do neither. Even the ordinary hope of being a wife and mother someday was dim; who would want to marry a woman who couldn’t go to the bathroom alone? My future seemed bleak, and yelling through Torture Time was a way to vent my frustration.

  I knew, when I screamed and cried, that I was being diffcult. I even realized that Mrs. Crab would not be so hard on me if I cooperated, but I felt she was wrong to make light of my pain, and so I continued to carry on.

  One morning, Dr. Bevis came along while I was having my Torture Time. As usual, I shouted and moaned while Mrs. Crab told me what a crybaby I was. Dr. Bevis stood beside my bed for a moment, watching. Suddenly embarrassed at my own behavior, I stopped yelling. I didn’t want my hero to see me at my worst.

  “It hurts, doesn’t it?” he said.

  I nodded.

  “If you do these exercises,” he said, “one of these days you’ll walk for me. If you don’t do them …” He shrugged and let me figure out the consequences myself.

  I swallowed a scream as Mrs. Crab forced my head toward my knees.

  “I’m proud of you for working so hard,” Dr. Bevis said.

  “Hmpf,” sniffed Mrs. Crab.

  That’s all he said. That’s all he needed to say. His words of acceptance and encouragement changed my behavior far more effectively than the therapist’s constant scolding.

  With all my heart, I longed to keep my promise to walk for Dr. Bevis. I wanted it not only to please him;

  I wanted it for myself. If I had to stretch my muscles in order to walk again, then I would stretch my muscles, no matter how much it hurt.

  But I still didn’t like Mrs. Crab. And whenever I was sure Dr. Bevis was not nearby, I still yelled.

  7: Star Patient Surprises Everyone

  On October first, I lay in bed with my eyes closed, rehearsing a new joke. As I imagined Dr. Bevis’s laughter, my leg itched. Without thinking, I scratched the itch. Then, as I realized what I had done, my eyes sprang open.

  Had I really used my hand? After three weeks of paralysis, I was almost afraid to believe it, for fear I had dreamed or imagined the movement. Holding my breath, I tried again. The fingers on my left hand moved back and forth.

  “I CAN MOVE MY HAND!!” I yelled.

  Two nurses rushed into the room.

  “Look! I can move my left hand!” I wiggled my fingers jubilantly.

  “Get Dr. Bevis,” said one of the nurses. She smiled at me as the other nurse hurried out of the room.

  “Can she really do it?” asked Tommy. “Can she mo
ve her hand?”

  “Yes,” said the nurse. “Her fingers are moving.”

  “Hooray!” shrieked Tommy. “The Lone Ranger rides again!”

  Dr. Bevis came bounding in. “What is all this shouting about?”

  Feeling triumphant, I moved my fingers.

  “Try to turn your hand over,” he said.

  I tried. The hand didn’t go all the way, but it moved. It definitely moved. It was Christmas and my birthday and the Fourth of July, all at the same time. I could move my hand!

  Dr. Bevis turned my hand palm up. “Try to bend your arm,” he said.

  My hand lifted an inch or so off the bed before it dropped back down.

  “What about the other hand?” he asked. “Is there any movement in your right hand?”

  To my complete astonishment, my right hand moved, too. Bending at the elbow, my lower arm raised several inches and I waved my fingers at Dr. Bevis.

  By then, I was so excited I felt as if I could jump from that bed and run laps around the hospital.

  “This is wonderful,” Dr. Bevis said. “This is terrific!”

  I agreed.

  “When your mother makes her daily phone call,” Dr. Bevis said, “she is going to be thrilled.”

  In the next few days, I improved rapidly. Soon I could use both hands, then my arms. I was able to sit up, starting with two minutes and working up to half an hour. Movement returned to my legs, too. My arms were still extremely weak, but I learned to feed myself again, which did wonders for both my attitude and my appetite. I was no longer totally helpless.

  With my bed cranked up, I could balance a book on my stomach and turn the pages myself. I had always liked to read, and now books provided hours of entertainment. The hospital had a small library; day after day, I lost myself in books.

  I began reading aloud to Tommy. I quit only when my voice got hoarse, but even then he always begged me to read just one more page. I preferred reading silently because it was faster, but I felt sorry for Tommy who was still stuck in the iron lung, unable to hold a book. I was clearly getting better; he was not. Each day, I read to him until my voice gave out.