Small Steps Read online

  With my eyes shut, pretending to be dead, I fell asleep. When I woke up, I was in a different hospital bed.

  “Where are my parents?” I asked the nurse.

  “You’re in the isolation ward. No visitors are allowed.”

  “But the doctor at the Sheltering Arms called them. He told me they would meet me here.”

  She glanced at my chart. “They were here when you were admitted,” she said. “They signed the papers.”

  “Why didn’t someone wake me up?”

  Angry tears filled my eyes. I had slept through my chance to see my parents.

  No one except the doctors and nurses could come in my room. They wore masks, gowns, and gloves that were sterilized or destroyed after they cared for me.

  The next day I had another spinal tap. That afternoon, a new doctor stood beside my bed. “There is more than one kind of polio,” he said.

  I opened my mouth to interrupt and tell him I already knew all about it, but before I could say anything, he said, “The least common kind is called bulbar polio.”

  Bulbar? That was a new word. I braced myself for more bad news.

  “Bulbar is the most serious form of polio,” he continued.

  “Worse than spinal or respiratory?” I didn’t see how that was possible. What could be worse than being paralyzed from the neck down and unable to breathe properly?

  “Bulbar polio impairs the patient’s ability to talk or swallow.”

  I whispered my question. “Do I have bulbar polio?” I knew the answer; why else would he be explaining this? But I had to ask.

  His answer was simple and direct. “Yes.”

  I could think of nothing to say. I had three kinds of polio.

  “There’s a call button next to your hand,” he said, indicating the cord with a button at the end that lay on my bed. Then he glanced at my chart. “You can’t use it, can you?”

  I tried to push the button, just in case I’d had a miraculous cure in the last five minutes, but my fingers remained where they were. “No.”

  “If you can’t swallow and start to choke, yell for a nurse. There’s always someone nearby.”

  His words, intended to reassure me, filled me with panic. If I was choking, how could I call for a nurse?

  3: An Oxygen Tent and a Chocolate Milkshake

  Days and nights blurred together.

  My parents came in, wearing hospital gowns, gloves, and masks.

  As they stood beside my bed, I saw fear in their eyes. I realized they were allowed into the isolation ward now, when they had not been earlier, because I was so sick that the doctors weren’t sure if I would live.

  I was glad to have them there, though they were not allowed to touch me and could stay only a few minutes. Always, in the past, they had made everything all right for me. I felt safer knowing they were in the room.

  I still had a fever. I ached all over, my throat hurt, and I couldn’t shift position in bed without help. Periodically, a nurse turned me from my side to my back and, later, to the other side. That eased the pain temporarily, but it always came back.

  “We’re going to put you in an oxygen tent,” the doctor said. It was the same doctor who had told me about bulbar polio. Was it the same day? The same week? I didn’t know if I had slept five minutes or a month.“We hope the oxygen will keep you breathing on your own,” he continued. “If not, a respirator will help you.”

  I looked where he pointed, and a wave of horror poured over me as I realized respirator was another name for what was popularly called an iron lung.

  I had seen pictures of people in iron lungs. The tube-shaped machine completely enclosed the patient’s body. Only the head stuck out. Bellows pumped air in and out, causing the patient’s lungs to expand and contract. Small doors and portholes on the sides of the iron lung allowed the nurses to put their hands in to bathe the patients and help with toileting. Portions of the doors were clear plastic so the nurses could see what they were doing.

  Some patients stayed in iron lungs for the rest of their lives, never again breathing by themselves. I thought it would be like being put in a coffin while you were still alive.

  Now an iron lung loomed beside my bed, hoses hanging like tentacles—a gray octopus ready to swallow me at any moment.

  As I imagined my future in an iron lung, tears of despair rolled down my cheeks. I could not raise my hand to wipe them away, and they ran into my ears.

  Until I got polio, I had led a carefree life. My brother, Art, is six years older than I; my parents had longed for a baby girl, and my birth was cause for celebration. Throughout my childhood, I was dearly loved, and I knew it.

  My earliest memories are of swinging, with lilacs in bloom on both sides of my swing—flying high past the purple blossoms, surrounded by the scent; of pushing Raggedy Ann and Marilyn, my favorite dolls, in my doll buggy; of sitting on a picnic bench with my mother’s relatives around me, all of them singing, “Sleep, Kentucky Babe” or “You Are My Sunshine.”

  Nothing in these experiences had prepared me for the words “The patient is paralyzed from the neck down” or the sight of an iron lung standing beside my hospital bed.The oxygen tent was a sheet of plastic that was draped over me from my waist to the back of my head.Inside the plastic, oxygen was released for me to breathe. A frame kept the plastic three feet above my head and chest while the four sides hung down to touch my bed. Looking through it was like viewing the room through a foggy windshield.

  My parents brought me a teddy bear from Art, who was a freshman at Carleton College. They put the little bear inside the oxygen tent.

  “This oxygen tent is just what you need,” Mother said, her cheerfulness sounding forced. “It will make it easier to breathe, and you’ll soon feel better.”

  The extra oxygen did ease my breathing, but nothing helped the fever and pain.

  Once, in the middle of the night, I awoke aching all over. I badly wanted to roll onto my other side.

  “Nurse!” I yelled, as loudly as I could. “Nurse!”

  The night nurse rushed into my room.

  “I need to be turned,” I said.

  “What?” She said it as if she had never heard of anything so outrageous.

  “I need to be turned,” I repeated.

  “No, you don’t!” She stood beside my bed, hands on her hips, and glared at me.

  She was a large woman, and seen through the oxygen tent, she looked even bigger.

  “I just turned you, not ten minutes ago,” she scolded. “I’m not turning you again already. You’ll get turned every thirty minutes, the same as every other patient in this ward.”

  “But my legs hurt.”

  “They’re going to hurt no matter how many times I roll you around, so you might as well get used to it.”

  “My back hurts, too. I want to lie on my other side.” Years of prodding by my mother surfaced; I added the magic word: “Please?”

  “I am too busy to run in here just to turn you in that bed.” She shook a finger at me. “Don’t you call me again, unless it’s an emergency. You hear me? Do not call me unless you can’t breathe.”

  My legs throbbed, my arms ached, my back, neck, and throat hurt. I lay there, helpless, staring at her. She could have turned me in the time it took to tell me no, I thought. And how was I supposed to call for help if I couldn’t breathe?

  At that moment, I wanted to go home more than I had ever wanted anything, but along with the river of homesickness that flowed through my veins came a trickle of indignation. I was angry at her and angry at my disease. I am not, I decided, going to lie here and be helpless for the rest of my life. I’m going to fight.

  I squinted at the nurse through the plastic oxygen tent. Someday, I vowed, she’ll be sorry. I’ll fight this polio, and I’ll beat it. I’ll walk out of here, and I’ll tell the whole world about the mean nurse who would not help a paralyzed child turn over in bed.

  When my parents vis
ited the next day, I told them about the nurse who refused to turn me. They were furious. I don’t know what they said, or to whom, but that night, I had a different nurse. The one who wouldn’t turn me was never my nurse again.

  During those first days in the hospital, I ate almost nothing. Even if food had sounded good, which it didn’t, it was now increasingly diffcult to swallow. My throat felt swollen shut, and its muscles didn’t want to work.

  All my life, I had swallowed without any conscious thought. Now I had to think about each step of the process and force my throat muscles to perform what used to be a simple act. It was hard to swallow my own saliva. Food was more than I could manage.

  Because of my fever, it was important for me to drink lots of liquid. I tried to drink some ice water each time my parents and the nurses held the glass for me. I was also given apple juice, grape juice, and 7-Up, but they were no easier to swallow than water. I was not offered milk even though I drank milk at home. Because milk creates phlegm, or mucus, in the throat, patients with bulbar polio were not allowed any milk or ice cream for fear it would make them choke.

  One evening, a particularly patient nurse coaxed me to drink some 7-Up. She put one hand behind my head and lifted it gently, to make it easier for me to swallow. “Just take little sips,” she said.

  I wanted to drink the 7-Up, to please her and because I was thirsty. I sucked a mouthful through the straw, but when I tried to swallow, my throat didn’t work and all the 7-Up came out my nose. As the fizzy liquid stung the inside of my nose, I sputtered and choked. The choking made it hard to get my breath, and that frightened me. If I couldn’t breathe, I would be put in the iron lung.

  After that, I didn’t want to drink. I was afraid it would come out my nose again; I was afraid of choking. Only the constant urging of my parents and the nurses got enough fluids into me.

  Eight days after my polio was diagnosed, my fever still stayed at one hundred two degrees. My breathing was shallow, the painful muscle spasms continued, and every inch of my body hurt. It was like having a bad case of the flu that never ended. My only bits of pleasure in the long hours of pain were the brief visits from my parents and looking at the little teddy bear that Art had sent.

  On the afternoon of the eighth day, Mother said, “We can’t go on like this. You need more nourishment. You’ll never get well if you don’t swallow something besides water and juice. Isn’t there anything that sounds good? Think hard. If you could have anything you wanted to eat or drink, what would it be?”

  “A chocolate milkshake,” I said.

  NO MILK, my chart stated. NO ICE CREAM.

  Mother told a nurse, “Peg would like a chocolate milkshake.”

  “We can’t let her have a milkshake,” the nurse replied. “I’m sorry.”

  “She needs nourishment,” Mother declared, “especially liquid. She thinks she can drink a milkshake.”

  “She could choke on it,” the nurse said. “It’s absolutely against the doctor’s orders.” She left the room, muttering about interfering parents.

  “You rest for a bit,” Mother told me. “We’ll be back soon.” She and Dad went out.

  They returned in less than an hour, carrying a white paper bag. The nurse followed them into my room.

  “I won’t be responsible for this,” she said, as she watched Dad take a milkshake container out of the bag. “Milk and ice cream are the worst things you could give her.”

  Dad took the lid off the container while Mother unwrapped a paper straw.

  “We know you have to follow the rules,” Dad said, “but we don’t. This is our daughter, and she has had nothing to eat for over a week. If a chocolate milkshake is what she wants, and she thinks she can drink it, then a chocolate milkshake is what she is going to have.”

  He handed the milkshake to Mother, who put the straw in it.

  “What if she chokes to death?” the nurse demanded. “How are you going to feel if you lose her because of a milkshake?”

  “If something doesn’t change soon,” Dad replied, “we’re going to lose her anyway. At least this way, we’ll know we tried everything we could.”

  Mother thrust the milkshake under the oxygen tent and guided the straw between my lips.

  I sucked the cold, thick chocolate shake into my mouth, held it there for a second, and swallowed. It slipped smoothly down my throat. For the first time since I got sick, something tasted good.

  I took another mouthful and swallowed it. I had to work at swallowing, but the milkshake went down. The next mouthful went down, too, and the one after that. I drank the whole milkshake and never choked once, even though I was lying flat on my back the whole time.

  When I made a loud slurping sound with my straw because the container was empty, my parents clapped and cheered. The relieved nurse cheered with them.

  Within an hour, my temperature dropped. That chocolate milkshake may have saved my life.

  4: “You Can’t Burn My Bear!”

  The next day I swallowed orange juice and broth. Soon I could eat small amounts of soft food such as oatmeal, tapioca pudding, and Jello. My chart still said NO MILK, but any time I asked for a milkshake, I got one.

  Within days, I could swallow naturally, without thinking about it, and nothing I drank came back through my nose.

  The deep, aching pain went away, and the muscle spasms stopped. It was easier to get my breath, too. The doctors decided to take me out of the oxygen tent for awhile, to see how long I could breathe on my own. My favorite doctor, a young blonde intern named Dr. Bevis, pulled back the plastic tent. I could see around me without everything looking foggy.

  Someone turned the crank at the foot of my bed, and the upper half of the bed raised up, putting me in a semi-sitting position. The change felt wonderful.

  “Breathe easy,” Dr. Bevis said. “Don’t take great gulps of air. Relax. Pretend you’re going to sleep.”

  I closed my eyes. Because my chest muscles were so weak, my stomach, rather than my diaphragm, rose and fell as I inhaled and exhaled. Each time my lungs filled with air, my brain filled with excitement. I could breathe without the oxygen tent!

  “You’re doing great,” Dr. Bevis said. “Let’s try it on your own. We’ll keep the oxygen tent here, in case you need it.”

  I opened my eyes and grinned at him. “I won’t need it,” I said.

  Later that afternoon, I watched joyfully as the iron lung was rolled out of my room. The next day, the oxygen tent was removed. I had won a major victory; I could breathe by myself.

  A nurse gave me more good news: I was moving out of isolation.

  “Does that mean I’m not contagious anymore?” I asked.

  “That’s right. Your parents won’t have to put on gowns, masks, and gloves before they visit you.” Above her mask, her eyes smiled at me. “And neither will I,” she added.

  She opened a large bag and began dropping get-well cards into it. I had received dozens of cards and small gifts from family and friends. I had a faint memory of Mother and Dad holding up cards for me to look at through the oxygen tent and telling me who had sent them, but I had been too sick to pay attention.

  The window ledge and the bedside table were crowded with cards, stuffed animals, books, and a flowering plant.

  As I watched the nurse put a stuffed cat into her bag, I assumed she was moving my belongings to my new ward.

  “This afternoon I’m going to have Mother read all my cards to me,” I said. “I was so sick when they came that I don’t remember who sent them.”

  “You can’t take these cards to your new room,” she said.

  “Why not? They’re mine.”

  “Anything you had in this room gets burned,” she said. Humming cheerfully, she dropped my new books into the bag.

  “Burned?” I yelped. “You’re going to burn my books? I haven’t read them yet. I don’t even know the titles.”

  She fished one of the books out of the bag and read
the cover aloud: “Anne of Green Gables.”

  “I want to read that one. I’ve heard it’s really good.”

  “I’m sorry,” she said. “We have to do this. It’s the only way to be sure the virus doesn’t spread.” Back into the bag went Anne of Green Gables, followed by the plant and a box of candy.

  “Those are mine!” I shouted, feeling like a two-year-old whose toys were being snatched by a bully. “You can’t do that!” I longed to leap from the bed and grab what was rightfully mine out of the nurse’s hands.

  Just then Mother arrived. I told her what was happening, certain she would make that unfair nurse give me back my belongings.

  To my surprise, Mother took the nurse’s side. “This has to be done, Peg. The hospital can’t let something contagious leave this room.”

  “But … ”

  She shook her head firmly, cutting off my protests. “Dad and I knew when we brought your mail to you that this would happen. The nurses told us. We brought it anyway because we hoped that seeing the cards and gifts would help you feel better when you were so sick.”

  The nurse picked up the teddy bear that Art had sent me.

  “Not my bear!” I cried. “You can’t burn my bear!”

  “I’m sorry,” said the nurse as she dropped Teddy into the bag. She sealed the bag with tape, and with gloved hands carried it out of the room.

  The teddy bear that had sustained me through the worst week of my life was about to be cremated. I felt like I was murdering my only friend.

  “You wouldn’t want someone else to get polio just because you kept your teddy bear, would you?” Mother said.

  “No,” I said. I knew she and the nurse were right, but I still didn’t like it one bit. I sulked until I learned that moving out of isolation meant that I could finally wear my own pajamas instead of a hospital gown.

  A different bed was wheeled in. After I was lifted onto it, a nurse stripped the sheets and blankets off the old bed and put them in a bag.