Small Steps Read online

  Anniversary Edition

  Small Steps:

  THE YEAR I GOT POLIO

  Peg Kehret

  Albert Whitman & Company

  Me at twelve, just before I got polio.

  Contents

  1. The Diagnosis

  2. Paralyzed from the Neck Down

  3. An Oxygen Tent and a Chocolate Milkshake

  4.“You Can’t Burn My Bear!”

  5.Hot Packs

  6.Torture Time

  7.Star Patient Surprises Everyone

  8.Roommates

  9. Sunday Visitors

  10.Happy Thirteenth Birthday

  11.Dancing the Hula, Popping a Wheelie

  12.A Disappointing Trip

  13.The Great Accordion Concert

  14.Good-bye, Silver; Hello, Sticks

  15.Plans for a Pageant

  16.Christmas

  17.A Present for Dr. Bevis

  18.Back to School

  Epilogue

  Image Gallery

  More about Polio

  Special Thanks

  Books for Young People by Peg Kehret

  Bibliography

  For my parents: Beth and Bob Schulze.

  When I began to write about my polio days, long-forgotten memories bubbled to the surface. I was astonished by the intense emotions these memories brought with them. Those months, more than any other time of my life, molded my

  personality.

  Since I have no transcript of these events, the dialogue is not strictly accurate, but the people mentioned are all real

  people. The incidents all happened, and the voices are as close to reality as I can make them.

  Peg Kehret

  1: The Diagnosis

  I never thought it would happen to me. Before a polio vaccine was developed, I knew that polio killed or crippled thousands of people, mainly children, each year, but I never expected it to invade my body, to paralyze my muscles.

  Polio is a highly contagious disease. In 1949, there were 42,033 cases reported in the United States. One of those was a twelve-year-old girl in Austin, Minnesota:

  Peg Schulze. Me.

  My ordeal began on a Friday early in September. In school that morning, I glanced at the clock often, eager for the Homecoming parade at four o’clock. As a seventh-grader, it was my first chance to take part in the Homecoming fun. For a week, my friends and I had spent every spare moment working on the seventh-grade float, and we were sure it would win first prize.

  My last class before lunch was chorus. I loved to sing, and we were practicing a song whose lyrics are the inscription on the Statue of Liberty. Usually the words “Give me your tired, your poor …” brought goosebumps to my arms, but on Homecoming day, I was distracted by a twitching muscle in my left thigh. As I sang, a section of my blue skirt popped up and down as if jumping beans lived in my leg.

  I pressed my hand against my thigh, trying to make the muscle be still, but it leaped and jerked beneath my fingers. I stretched my leg forward and rotated the ankle. Twitch, twitch. Next I tightened my leg muscles for a few seconds and then relaxed them. Nothing helped.

  The bell rang. When I started toward my locker, my legs buckled as if I had nothing but cotton inside my skin. I collapsed, scattering my books on the floor.

  Someone yelled, “Peg fainted,” but I knew I had not fainted because my eyes stayed open and I was conscious. I sat on the floor for a moment.

  “Are you all right?” my friend Karen asked as she helped me stand up.

  “Yes. I don’t know what happened.”

  “You look pale.”

  “I’m fine,” I insisted. “Really.”

  I put my books in my locker and went home for lunch, as I did every day.

  Two days earlier, I’d gotten a sore throat and head-ache. Now I also felt weak, and my back hurt. What rotten timing, I thought, to get sick on Homecoming day.

  Although my legs felt wobbly, I walked the twelve blocks home. I didn’t tell my mother about the fall orabout my headache and other problems because I knew she would make me stay home.

  I was glad to sit down to eat lunch. Maybe, I thought, I should not have stayed up so late the night before. Or maybe I’m just hungry.

  When I reached for my milk, my hand shook so hard I couldn’t pick up the glass. I grasped it with both hands; they trembled so badly that milk sloshed over the side.

  Mother put her hand on my forehead. “You feel hot,” she said. “You’re going straight to bed.”

  It was a relief to lie down. I wondered why my back hurt; I hadn’t lifted anything heavy. I couldn’t imagine why I was so tired, either. I felt as if I had not slept in days.

  I fell asleep right away and woke three hours later with a stiff neck. My back hurt even more than before, and now my legs ached as well. Several times I hadpainful muscle spasms in my legs and toes. The muscles tightened until my knees bent and my toes curled, and I couldn’t straighten my legs or toes until the spasms passed.

  I looked at the clock; the Homecoming parade started in fifteen minutes.

  “I want to go to the parade,” I said.

  Mother stuck a thermometer in my mouth, said, “One hundred and two,” and called the doctor. The seventh-grade float would have to win first place without me. I went back to sleep.

  Dr. Wright came, took my temperature, listened to my breathing, and talked with Mother. Mother sponged my forehead with a cold cloth. I dozed, woke, and slept again.

  At midnight, I began to vomit. Mother and Dad helped me to the bathroom; we all assumed I had the flu.

  Dr. Wright returned before breakfast the next morning and took my temperature again. “Still one hundred and two,” he said. He helped me sit up, with my feet dangling over the side of the bed. He tapped my knees with his rubber mallet; this was supposed to make my legs jerk. They didn’t. They hung limp and unresponsive.

  I was too woozy from pain and fever to care.

  He ran his fingernail across the bottom of my foot, from the heel to the toes. It felt awful, but I couldn’t pull my foot away. He did the same thing on the other foot, with the same effect. I wished he would leave me alone so I could sleep.

  “I need to do a spinal tap on her,” he told my parents. “Can you take her to the hospital right away?”

  Dad helped me out of bed. I was too sick to get dressed.

  At the hospital, I lay on my side while Dr. Wright inserted a needle into my spinal column and withdrew some fluid. Although it didn’t take long, it was painful.

  The laboratory analyzed the fluid immediately. When Dr. Wright got the results, he asked my parents to go to another room. While I dozed again, he told them the diagnosis, and they returned alone to tell me.

  Mother held my hand.

  “You have polio,” Dad said, as he stroked my hair back from my forehead. “You will need to go to a special hospital for polio patients, in Minneapolis.”

  Polio! Panic shot through me, and I began to cry. I had seen Life magazine pictures of polio patients in wheelchairs or wearing heavy iron leg braces. Each year the March of Dimes, which raised money to aid polio patients and fund research, printed a poster featuring a child in a wheelchair or wearing leg braces or using walking sticks. The posters hung in stores, schools, and libraries—frequent reminders of the terrible and lasting effects of polio. Everyone was afraid of polio. Since the epidemics usually happened in warm weather, children were kept away from swimming pools and other crowded public places every summer because their parents didn’t want them exposed to the virus.

  How could I have polio? I didn’t know anyone who had the disease. Where did the virus come from? How did it get in my body?

  I
didn’t want to have polio; I didn’t want to leave my family and go to a hospital one hundred miles away.

  As we drove home to pack, I sat slumped in the back seat. “How long will I have to stay in the hospital?” I asked.

  “Until you’re well,” Mother said.

  I caught the look of dread and uncertainty that passed between my parents. It might be weeks or months or even years before I came home. It might be never; people sometimes died from polio.

  That fear, unspoken, settled over us like a blanket, smothering further conversation.

  When we got home, I was not allowed to leave the car, not even to say good-bye to Grandpa, who lived with us, or to B.J., my dog. We could not take a chance of spreading the deadly virus. Our orders were strict: I must contaminate no one.

  “Karen called,” Mother said when she returned with

  a suitcase. “The seventh-grade float won second prize.”

  I was too sick and frightened to care.

  Grandpa waved at me through the car window. Tears glistened on his cheeks. I had never seen my grandfather cry.

  Later that morning, I walked into the isolation ward of the Sheltering Arms Hospital in Minneapolis and went to bed in a private room. No one was allowed in except the doctors and nurses, and they wore masks. My parents stood outside on the grass, waving bravely and blowing

  kisses through the window. Exhausted, feverish, and scared, I fell asleep.

  When I woke up, I was paralyzed.

  2: Paralyzed from the Neck Down

  My mouth felt full of sawdust; my lips stuck together in the corners. As I opened my eyes, I saw a glass of ice water on the table beside my bed. It was exactly what I needed, but when I tried to reach the water, my right arm did not move.

  I tried again. Nothing happened. I tried with my left arm. Nothing. I tried to bend my knees so I could roll on my side, but my legs were two logs, stiff and unmoving. I was too weak even to lift my head off the pillow.

  “Help!”

  A nurse ran in.

  “I can’t reach the water,” I said. “There’s something wrong with my hands. I’m thirsty, but when I try to get the glass …”

  “Hush,” she said. She lifted the glass and slipped astraw between my lips. “There you are. Have your drink.”I took only a sip. “What’s wrong with my arms and legs?” I asked. “Why can’t I move?”

  “You have polio,” she said, as if that explained everything.

  “But I could move before I fell asleep. I walked in here. I had polio then, and I could still move.”

  “Don’t try to talk. Save your energy.” She held the straw to my lips again, and I drank the glass of water. “I’ll be right back,” she said when I finished.

  She returned quickly, with a doctor. While he examined me, the nurse held a clipboard and made notes.

  “Move your right hand,” the doctor said.

  I tried; my hand did not move.

  “Try to wiggle your fingers.”

  My fingers lay like an empty glove.

  He put his hand around my wrist and lifted my arm a foot off the bed. “Hold your arm in the air when I let go,” he said.

  I could feel his hand on my wrist, but when he let go, my arm flopped down. I felt like the Raggedy Ann doll I’d left on my bed at home.

  He pulled back the sheet. I wore a short hospital gown rather than my own pajamas. I did not remember putting it on, and I wondered who had undressed me.

  “Try to lift your left leg.”

  I closed my eyes and concentrated. My leg remained on the bed.

  “Now try to lift your right leg.”

  My right leg stayed where it was.

  “Can you wiggle your toes?”

  I could not.

  Each time the doctor asked me to move a part of my body and I could not move it, my terror increased. I could talk, I could open and close my eyes, and I could turn my head from side to side on my pillow, but otherwise I could not move at all.

  The doctor ran a wooden tongue depressor up the bottoms of my feet. I wanted to kick it away, but my feet wouldn’t budge.

  He placed his hands on my ribs. “Intercostal expansion is poor,” he said.

  I felt as if I needed a translator. “What does that mean?” I asked.

  “The muscles which expand the rib cage when you breathe are weak,” the nurse explained.

  The doctor said, “Diagnosis is acute anterior poliomyelitis. The patient is paralyzed from the neck down.”

  I did not need a translator for his last sentence.

  The doctor left, saying he would return in an hour to check me.

  “We’ll keep you comfortable,” the nurse said, “and I’ll tell your parents about the paralysis.”

  “Are they here?” I asked. “I want to see them.”

  “I’m sorry,” she said. “You’re in isolation. No visitors are allowed.” She started for the door, turned, and added, “We can’t risk spreading this disease.”

  She left me alone with my terror.

  Don’t think about being paralyzed, I told myself. But how could I think of anything else?

  The nurse had forgotten to pull the sheet back up, and the skimpy hospital gown did not even reach my knees. I wanted to cover myself, but I couldn’t.

  Feeling vulnerable and exposed, I grew more panicky. What if the hospital caught fire? How would I get out? The doctor’s words played over and over in my mind like a broken record. “The patient is paralyzed from the neck down. The patient is paralyzed from the neck down.”

  I wanted Mother and Dad. I wanted to be well again. I wanted to go home.

  When the doctor returned an hour later, I felt short of breath.

  “The patient’s nostrils are flaring,” he said to the nurse. I wondered if he was describing me or a horse.

  For two days the fever stayed at one hundred and two, and it became increasingly diffcult to breathe. Mostly, I slept, waking often because of muscle spasms or because my back and neck ached so badly. A nurse gently massaged my shoulders, back, and legs, which helped temporarily. I was given aspirin for the pain.

  My voice developed a nasal twang. I sounded like a bad tape recording of myself.

  The nurses told me that my parents sent their love. They were waiting nearby and wanted to see me, but it was against the hospital rules. I thought the rules were foolish. Mother and Dad had already been exposed to me at home and in the car when they drove me to the hospital, so why couldn’t they visit me now?

  Doctors and nurses checked me frequently and urged me to drink something. I drank water, but it became harder and harder to swallow. I wanted only to be left alone so I could sleep. When I slept, I did not hurt.

  On my third day at the Sheltering Arms, the doctor said, “The patient may need a respirator.”

  “University Hospital?” the nurse said.

  The doctor nodded.

  “I’ll arrange for an ambulance,” the nurse said.

  That conversation got my attention, and I roused myself enough to ask, “What’s happening?”

  The doctor put his hand on my shoulder. “There is more than one kind of polio,” he said. “One is spinal polio. It’s the most common type and causes paralysis in the patient’s arms and legs.”

  “That’s what I have?” I asked. “That’s why I can’t move?”

  “Yes. You have spinal polio. Another kind of polio is respiratory; it causes diffculty in breathing.”

  I was acutely aware of how hard it was for me to breathe. Was he telling me I had two kinds of polio?

  “Because you have respiratory polio, too,” he said, “we’re transferring you to the University of Minnesota Hospital. We’re afraid your lungs may not continue to function on their own.”

  What was he saying? If my lungs quit working, I would stop breathing, and if I stopped breathing, I would die. Is that what the doctor meant—that I was going to die? I desperately wanted my parents.r />
  The doctor continued: “The Sheltering Arms is a rehabilitation center for polio patients who are trying to regain the use of their muscles. It is not equipped to deal with cases as critical as yours. University Hospital has respirators, and I want you to be near one. If your lungs can’t function on their own, the respirator will help. It will breathe for you.”

  I didn’t know what a respirator was, but if it would help me breathe, it must be okay. At least it seemed I was not going to die right on the spot.

  “You’ll be taken by ambulance to University Hospital,” he continued. “I hope you’ll be back at the Sheltering Arms soon.”

  I said nothing. I had not wanted to come to the Sheltering Arms in the first place. Why would I be in any hurry to return?

  This move was bad news—it meant I was so sick that I needed a hospital with more emergency facilities than the Sheltering Arms had. I could not sit up. I could not move my arms or legs. It was hard to breathe and I was burning with fever and I was far more frightened than I had ever been in my entire life. I not only had polio, I had two kinds of polio—spinal and respiratory.

  “I’ll call your parents,” the doctor said softly, patting my arm. “They can meet you at University Hospital.”

  I was transferred from the bed to a gurney and wheeled out a door where an ambulance waited. The cool outdoor air brought me out of my feverish stupor. I was surprised to see that it was dark out; I had lost all track of time.

  This is backward, I thought. I walked into the hospital by myself and now, three days later, I can’t move at all. Hospitals are supposed to make you get better, not worse.

  While the attendants opened the ambulance doors and prepared to load me in, I heard a buzzing sound. A mosquito was flying around my head.

  Zzzzt. Zzzzt. I turned my face from side to side, hoping to discourage it from landing on me, but the buzzing grew louder and then abruptly stopped. I could not swat the mosquito or brush it away, and it bit me on the cheek.

  As we drove through the streets of Minneapolis, people in cars looked curiously in the ambulance window. I longed to pull the blanket up over my head, but I could not move my hands. Instead, I shut my eyes and pretended I was dead. That seemed a fine joke on those who stared, and gave me great satisfaction.