Small Steps
Page 4
Dr. Bevis continued to praise and encourage me. Mrs. Crab bragged about my progress. The nurses called me their star patient. I realized that no one had thought I would ever regain the use of my arms and legs.
A week after I first moved my hand, Dr. Bevis said he wanted to see if I could stand by myself. First, he helped me sit on the edge of the bed. Then, with a nurse on each side, I was eased off the bed until my feet touched the floor. Each nurse had a hand firmly under one of my armpits, holding me up.
“Lock your knees,” Dr. Bevis instructed. “Stand up straight.”
I tried to do as he said.
“We’re going to let go,” he said, “but we won’t let you fall. When the nurses drop their arms, see if you can stand by yourself.”
Tommy, my iron lung cheerleader, hollered, “Do it, kemo sabe! Do it!”
It was wonderful to feel myself in an upright position again. I was sure I would be able to stand alone. I even imagined taking a step or two.
“All right,” Dr. Bevis said to the nurses. “Let go.”
As soon as they released me, I toppled. Without support, my legs were like cooked spaghetti. The nurses and Dr. Bevis all grabbed me to keep me from crashing to the floor.
Disappointment filled me, and I could tell the others were disappointed, too. The strength had returned so quickly to my arms and hands that everyone expected my legs to be better also.
“I’m sorry,” I said. “I tried.”
“It will happen,” Dr. Bevis said.
They helped me back into bed, and I was grateful to lie down again. Standing for that short time, even with help, had exhausted me and made my back ache.
The twice-daily hot packs and stretching continued, and so did my progress. Each small achievement, such as being able to wiggle the toes on one foot, was heralded with great joy. I had to keep my feet flat against a board at the foot of my bed to prevent them from drooping forward permanently, and I longed to lie in bed without that board.
Although I was delighted with every small accomplishment, I wondered why I got better and some of the other patients did not. Tommy might spend the rest of his life in the iron lung. It didn’t seem fair.
I mentioned this to Dr. Bevis. “Some cases of polio are severe, and some are mild,” he said. “When the polio virus completely destroys a nerve center, the muscles controlled by that center are paralyzed forever. If the damage is slight rather than total, the paralysis is temporary. Your muscles were severely weakened, but the nerve damage wasn’t total. It’s possible for weak muscles to gain back some of their strength.”
“So Tommy’s polio is worse than mine,” I said.
“That’s right. It also helped that your parents took you to the doctor right away. You were already here and diagnosed when you needed oxygen; some people who have respiratory polio are not that fortunate.”
I remembered how hard it had been to breathe, and how much the oxygen tent had helped.
Dr. Bevis continued, “Most people think they have the flu and don’t get medical help until paralysis sets in. By the time they learn they have polio, and get to a hospital that’s equipped to treat them, the respiratory patients often have to go straight into an iron lung. They don’t get hot packs or physical therapy until they can breathe on their own again, which might be several months later. The sooner the Sister Kenny treatments are started, the more they help.” He smiled at me. “You are one lucky girl.”
But it wasn’t all luck, I thought; it was quick action by my parents. They helped create my good luck.
“I’ve been wondering something else, too,” I said. “How did I get polio when not one other person in my town got it?”
“Many people have polio and never know it,” Dr. Bevis said. “They are highly contagious, but because their symptoms are so slight, they don’t see a doctor. There are probably thousands of cases of polio every year that are so mild they are never diagnosed.”
“So I caught it from someone who didn’t know they had it,” I said. It seemed unbelievable to me that anyone could have polio and not realize it.
Mail was delivered every afternoon, and I looked forward to a daily letter from my mother. Most of her letters were signed, “Love, Mother and Dad,” but a few were signed with a muddy paw print. Those were from B.J., telling me he had chased a cat or buried a bone. Grandpa depended on Mother to tell me any news, but he sent a gift each week when my parents came to visit.
Art wrote about college life and sent me a new teddy bear just like the one that got burned.
One mail delivery included a big brown packet from my school in Austin. When I opened it, dozens of letters from my classmates tumbled out. Karen wrote about a student petition to change the rules so girls could wear pants to school instead of the required dresses. Another girl complained that her new haircut was too short; a third was outraged at the basketball referee.
I had the strange feeling that I was reading about a different lifetime. The other kids were upset about such unimportant things.
Just a few weeks earlier, I, too, had worried about clothes and hair and the basketball team. Now none of this mattered. I had faced death. I had lived with excruciating pain and with loneliness and uncertainty about the future. Bad haircuts and lost ball games would never bother me again.
Even the petition to allow girls to wear pants to school, a cause I supported, failed to excite me. I would happily wear a gunnysack, I thought, if I could walk into the school.
“Be glad you aren’t here,” one boy wrote. “You aren’t missing anything but hard tests and too much homework.”
He’s wrong, I thought. I miss my own room and playing with B.J. and helping Grandpa in the garden. I miss my piano lessons and roller-skating and licking the pan when Mother makes fudge. I miss visiting my aunts and uncles. I miss riding my bike with Karen and playing Monopoly with Richard.
I put the letters aside, knowing I was changed forever. My world was now the hospital. Would I have anything in common with my classmates when I went home? I felt closer now to Tommy, whose head was the only part of him I had ever seen, than I did to the kids who used to be my dearest friends. Tommy understood what it was like to have polio; my school friends could never know.
8: Roommates
In mid-October, Dr. Bevis told me, “I have wonderful news. You’re being discharged from University Hospital and going back to Sheltering Arms for rehabilitation.”
I burst into tears. “That isn’t wonderful! I don’t want to leave; I want to stay here!”
Dr. Bevis patted my shoulder. “We’ve done all we can for you here,” he said. “You need different therapy now. You’ll have a new doctor and—”
“I don’t want a new doctor. I want you.”
“—and a new physical therapist.”
Tommy said, “No more Mrs. Crab.”
I blew my nose. “Do I have to?” I asked. “Can’t I be rehabilitated here?”
“We don’t do it here. We handle only acute cases.”
“Tommy’s been here longer than I have, and you aren’t kicking him out,” I said.
“Tommy still needs the respirator.”
“I don’t know anybody at the Sheltering Arms.”
“You didn’t know anyone here when you first came. It’s always hard to be the new kid, but you’ll adjust.”
I saw there was no use arguing.
“When do I leave?” I asked.
“This afternoon. The discharge papers are all ready. Actually, they were ready a couple of days ago, but the Sheltering Arms didn’t have a bed for you until now.”
“You’ve known for two days that I was leaving? Why didn’t anyone tell me?”
“Maybe we were afraid you’d make a fuss.”
I scowled at him, aware that I was making a fuss.
“They probably won’t even paint my toenails,” I said.
He laughed and went out the door.
This time I could tak
e my belongings with me. My clothes, books, and the new teddy bear were packed in a paper bag.
All morning, nurses stopped by to wish me well. Even Mrs. Crab came to say good-bye. “I know you hated the exercises because they hurt,” she said, “but someday you’ll thank me for making you do them.”
I doubted it.
“I’ll miss you,” Tommy said, “especially your reading to me and your knock, knock jokes. And I’ll miss the ‘Lone Ranger.’ ”
“You can keep my radio,” I told him. “Think about me every Monday, Wednesday, and Friday.”
“No kidding? I get to keep the radio?”
“Sure. My parents can bring me my radio from home.”
That wasn’t true. I didn’t have my own radio at home; I listened to the “Lone Ranger” on our family radio. But in the time we had been together, no one had visited Tommy, for his family lived hundreds of miles away. They probably didn’t know that he wanted a radio at the hospital. I decided Tommy needed to hear the “Lone Ranger” more than I did.
“Thanks,” he said. “I hope you learn to walk again.”
I looked at his small head, protruding from the iron lung. The soft swoosh, swoosh of the machine had been background music for our reading, for every conversation, and for the “Lone Ranger” broadcasts. Now I was being released, while my fellow inmate in the prison of paralysis might listen to the swooshing forever.
“I hope you learn to breathe without the respirator,” I told him, and I had never made a more sincere wish. “Good-bye, Tonto.”
“Adios, kemo sabe.”
As I was being transferred to the ambulance gurney, Dr. Bevis pinned a yellow rose to my pajama top. “For my favorite patient,” he said.
My lip began to tremble.
He said, “Knock, knock.”
I blinked back my tears. “Who’s there?”
“Yul.”
“Yul, who?”
“Yul be back soon, to walk for me.”
“That’s right,” I said, as I was lifted into the ambulance.
At the Sheltering Arms, I was put in a large room with four other girls. Instead of the sterile white walls and white blankets that I’d had at University Hospital, Room 202 was full of color, with striped blankets, flowered curtains, and pictures on the walls. There was even a bookcase filled with books.
We each had a hospital bed that could be cranked up so that our heads and shoulders were elevated. This allowed us to see each other, and I quickly became acquainted with my new roommates.
Dorothy was fourteen, a cheerful girl with a shy, sweet smile. She was sitting in a wheelchair when I arrived, and she waved a welcome. I liked her immediately.
“I came here from University Hospital, too,” she said, “on my birthday. I was still paralyzed then, from the neck down.”
Dorothy told me she had been at the Sheltering Arms for two months and was hoping to learn to walk with braces on her legs.
Shirley, who was also fourteen, was fighting a double problem. She had been born with arms that only straightened halfway. Now polio had made her situation worse. After seven months in the hospital, she still had no movement in her legs. Because of back weakness, she could sit in a wheelchair for only brief periods. She also had breathing problems.
Renée, petite and dark-haired, was twelve, like me. “I’m learning to walk with leg braces and walking sticks,” she told me. “I’ll probably always have to use them, unless physical therapy works wonders.”
At the mention of physical therapy, I groaned. “I call physical therapy Torture Time,” I said.
“It isn’t so bad,” Renée said. “At least I’m out of the iron lung.”
“You were in an iron lung?” I said.
Renée nodded. “At University Hospital. I was in one for five months.”
“I was in an iron lung, too,” said Shirley.
“So was I,” said Dorothy.
My hopes for Tommy soared. Maybe he would get out of the iron lung.
I looked at the last of my roommates, who also was in a wheelchair. She hadn’t said anything.
“This is Alice,” Dorothy said. “She’s thirteen.”
Alice was a sturdy-looking girl with wide eyes and soft curls. Her toes pointed permanently downward, the “dropfoot” condition that the footboard on my hospital bed was intended to prevent. I asked her how long she had been at the Sheltering Arms.
“Ten years,” she said.
I gaped at her. “Ten years? You’ve been here since you were three years old?”
“Well, well,” Alice said. “The genius can subtract.”
“When will you be able to go home?” I asked.
“I am home.”
“Alice lives at Sheltering Arms,” Renée said.
Disbelieving, I pressed on. “But what about your parents? Don’t you have any family?”
“My parents,” said Alice, “don’t want me.”
I stared at her, not knowing what to say.
“After I’d been here a few months, the doctors said I could go home, but I would never get any better,” Alice said.
I waited.
“My parents refused to take me. They didn’t want a big old crippled-up blob on their hands for the rest of their lives.”
I realized she wanted to shock me, and she succeeded. I was speechless.
Renée continued the explanation. “Alice comes from a big family,” she said. “She got polio before the doctors knew about hot packs and muscle stretches. When she didn’t get well, her parents were unable to take care of her and all of the other kids, too, so she became a ward of the state.”
“I—I’m sorry,” I said.
“Don’t feel sorry for me!” Alice snapped. “I like it here. I wouldn’t leave if they paid me.”
I thought about my own parents. I knew they would never refuse to take me home, no matter what condition I was in. For the first time since my paralysis set in, I realized there was something worse than having polio.
“Don’t look so horrified,” Alice said. “Dorothy could go home, too, if there was someone to take care of her.”
I looked nervously across the room. Had another of my roommates been abandoned by her family?
Dorothy smiled reassuringly. “I live on a farm,” she said, “and everyone has to work. I can’t go home until I can get around by myself because once I’m home, there won’t always be someone to help me. My family can’t afford to hire help. I’m learning to put braces on my legs now, so it shouldn’t be too much longer.”
“You hope,” said Alice. The chip on her shoulder seemed the size of a fireplace log, but I didn’t blame her for being mad at the world.
I had never thought of myself as a privileged child. My dad sold meat for the Hormel Company. My mother was a homemaker. Grandpa worked in a print shop, setting type. Ours was an average middle-class family. Now I saw how lucky I was, not only to have parents who loved me, but parents who were able to care for me and to meet my needs, whatever they might be. I had absolutely no doubt that if the doctors said I could go home, I would be out the door the next day.
And if I ended up a big old crippled-up blob, as Alice put it? I shuddered. Even though I knew my parents would always love me and take care of me, I didn’t want them to have to. I wanted to go home and return to school and be a normal person. And I wanted to go back to University Hospital and walk for Dr. Bevis.
I was going to meet my new physical therapist, Miss Ballard, the next morning and I dreaded it. What if she was another Mrs. Crab? Or worse?
After hearing Alice’s story, I decided I would do everything Miss Ballard asked me to do, even if she was the torture champion of all time.
9: Sunday Visitors
Miss Ballard was young and pretty, with a friendly smile, but I was wary as I answered her questions about myself. “I’m going to watch you do some exercises,” she said, “so I’ll know best how to help you.”
&nb
sp; Here it comes, I thought, more Torture Time.
To my surprise, each time Miss Ballard asked me to move an arm or leg, she said, “Please.” When I did as she asked, she said, “That’s good. You’re doing great.” I did arm and hand movements, followed by leg and foot movements. Each time, Miss Ballard praised my efforts, even when I was not able to do everything that she asked me to do.
“Just one more,” she said. She sat me up in bed, with my feet flat against the footboard, and put her hand on the back of my head.
She saved the worst for last, I thought, remembering how it hurt my back and hamstring muscles when Mrs. Crab shoved my head toward my knees. I shut my eyes, determined not to cry out in front of my roommates.
“Let me know when this starts to hurt,” she said. “I want to stretch your muscles and keep them loose, but I don’t ever want you to feel real pain.”
My eyes popped open. “You don’t?” I said.
“Of course not.”
I could hardly believe my ears.
Miss Ballard pushed slowly, applying gentle, steady pressure. Even when it began to hurt, I didn’t tell her right away. Knowing she would stop when I asked her to, I let her push a tiny bit farther. From then on, I always let her go a little beyond the point where it hurt, so I would get well that much faster.
Miss Ballard was lavish with praise for my efforts. She even listened to my knock, knock jokes. Soon I looked forward to my daily physical therapy sessions.
I got a wheelchair and was allowed to sit up for an hour at a time. I was especially glad that I could be wheeled to the bathroom, instead of using a bedpan.
I called my wheelchair my iron horse, and like the Lone Ranger, I named my horse Silver. Each time I got into the wheelchair, I yelled, “Hi, yo, Silver! Awa-a-ay!” and whacked the side with the palm of my hand.
The Sheltering Arms allowed visitors twice a week: on Wednesday evenings and on Sundays from noon until four. My home in Austin was a two-hour drive, so Wednesday evenings were out of the question for my parents.