Page 7 of Small Steps


  From my very first attempt, I hated the accordion. It was heavy and awkward, and pushing it in and out made my arms ache. The trick of playing a melody on the keyboard with one hand, pushing the proper chord buttons with the other hand, and at the same time pushing and pulling on the accordion itself was completely beyond me.

  “It would be easier if you asked me to juggle and tap dance at the same time,” I said.

  “You just need practice,” Miss Ballard replied. “Try a little longer.”

  I did try. However, even when I got the correct right-hand note with the proper left-hand chord and pushed air through the bellows at the same time, I didn’t care for the sound. I had never liked accordion music, and my efforts during O.T. did nothing to change my mind.

  When my parents heard about the accordion, Mother said, “What fun! You’ve always loved your piano lessons.”

  “That’s different,” I said. “I like the way a piano sounds.”

  “You already know how to read music,” Dad pointed out. “You will master that accordion in no time.”

  I insisted I would never be adept on the accordion, and Dad kept saying it would be a breeze.

  I finally said, “Why don’t you play it, if you think it’s so easy?”

  “All right. I will,” said Dad, and off he went to the O.T. room to borrow the accordion.

  He came back with the shoulder straps in place and an eager look on his face. My dad played piano by ear, so he didn’t need sheet music. Even so, the sounds he produced could only be called squawks and squeaks.

  He pushed and pulled. He punched the buttons. He grew red in the face. Beads of perspiration popped out on his bald spot. Something vaguely resembling the first few notes of “Beer Barrel Polka” emerged from the accordion, but they were accompanied by assorted other sounds, none of which could be called musical.

  We girls covered our ears, made faces, and booed. We pointed our thumbs down. Mother laughed until tears ran down her cheeks.

  Finally, Dad admitted defeat. Temporary defeat.

  “I’ll try again next week,” he said. “Meanwhile, I want you to keep practicing.”

  “It will sound just as terrible next week,” I said, but I agreed to work on my accordion technique awhile longer.

  The following Sunday, we could hardly wait to tease Dad about his musical fiasco.

  “When do we get the accordion concert?” Renée asked the minute my parents arrived.

  “Wait!” exclaimed Alice. “I want to put in my earplugs.”

  We teased until Dad reluctantly agreed to try it again.

  We snickered and tee-heed as he brought the O.T. accordion into the room. He sat on a chair and carefully adjusted the straps.

  “Quit stalling,” I said.

  “What’s the rush?” said Renée as she put her fingers in her ears.

  Dad began to play. Instead of squeaks and squawks, he played “Beer Barrel Polka” flawlessly, from start to finish.

  Our jaws dropped. We gazed at him and at each other in astonishment. When he finished the song, our questions exploded like a string of firecrackers. “How did you learn to play?” “Who taught you?” “Where did you get an accordion?” He simply smiled, while Mother applauded.

  Then they told us the whole story. He had rented an accordion from a music store and practiced every spare second in order to surprise us with his concert.

  “Can you play any other songs?” I asked.

  “It took me all week to learn that one,” Dad said.

  “And he stayed up until midnight every night, practicing,” Mother added.

  After that, I didn’t dare complain about my accordion sessions. I never did get as good at it as Dad got in just seven days, but I managed to produce a few recognizable tunes, and the effort did help strengthen my arm muscles and my fingers.

  The Sheltering Arms had a school which Dorothy, Renée, Alice, and I attended. Shirley was supposed to go, too, but because of her weak back, she could only sit up in a wheelchair for an hour at a time, so she didn’t always make it to class.

  The staff consisted of one dedicated, overworked teacher, Mrs. West, who tried to help dozens of children of varying ages and educational backgrounds. It should have been an impossible task, made even harder by the fact that all of the students had physical disabilities, yet the school was orderly and effective.

  Students in wheelchairs got a wooden desktop which attached to the arms of the wheelchair and provided a writing surface. I loved my new desk; for the first time since I got polio, it was comfortable to write. The desktop also made it easier and less tiring to hold a book.

  The school had a small library, and Mrs. West recommended books to us. A librarian from the Minneapolis Public Library brought books once a week and was always willing to take requests. I stopped reading books for children and began reading adult books. I read The Hunchback of Notre Dame and War and Peace and The Scarlet Letter.

  Because hot baths, physical therapy, and O.T. took up much of my time, I was in school for only two hours a day. I hungered for more. I especially liked hearing books read aloud and writing book reports.

  Mrs. West had several seventh-grade textbooks, but they were not the same books that I had in my school at home. She suggested that I try to get the same books that my classmates in Austin were using. “That way, you won’t be so far behind when you go home,” she said.

  My mother talked to the principal in Austin, who agreed that Mother should bring me textbooks from each of my classes, along with the weekly assignments that the other kids were doing. Because I had already missed so many weeks of classes and my hand still tired quickly when I wrote, I was not required to write the assignments or turn in any homework.

  At the end of the school year, I would take the same final exams that the other kids in my grade took for each class. If I passed, I would go on to eighth grade. If I failed, I would be held back a year to repeat those classes.

  No one ever told me to read my history assignments or study my math. It was up to me. Since I did not intend to be a grade behind my friends, I gladly taught myself.

  Alice was interested in my schoolwork, especially my history lessons. Whenever I told her what I was reading, she listened carefully. Sometimes she asked questions which forced me to go back to my book for the answers. Other times, we had lively discussions which we both enjoyed. I learned to respect Alice’s intellect, and I kidded her about getting a job as my tutor.

  The school had a collection of newspaper and magazine articles about Sister Kenny. Curious about the woman who invented Torture Time, I read them. I had assumed Sister Kenny was a Catholic nun. She was not. “Sister” is an Australian military term, the equivalent of a first lieutenant in the United States Army. Elizabeth Kenny was commissioned “sister” while serving as a nurse in World War I.

  Sister Kenny developed her unique treatments accidentally. While on vacation in the bush country of Australia in 1903, she was asked to help a sick child. Polio was not yet a common disease, and she had no idea what was wrong with the little girl, who was in extreme pain and unable to straighten one arm and one leg. There was no telephone, and no doctor or hospital nearby.

  Sister Kenny had a special interest in and knowledge of muscles because her younger brother’s muscles had been weak when he was a child. She had developed exercises for him even before she began her nurse’s training. She recognized that the little girl’s agony was caused by severe muscle spasms, and she knew the relaxing power of heat. She tore a wool blanket into strips, dipped them in boiling water, wrung them out, and placed them on the child. The little girl stopped crying and fell asleep.

  Each time the little girl awoke in pain, Sister Kenny applied more hot packs. As the muscles relaxed, she gently massaged the child’s arm and leg until the girl was able to straighten them.

  A second child soon showed the same symptoms, and once again Sister Kenny eased the pain with hot packs and massage. Usi
ng her knowledge of muscles, she suggested exercises for the children to do as soon as they were well enough.

  When she was finally able to discuss these cases with a doctor, she learned that her patients had suffered frominfantile paralysis (the original name for polio), and that her treatment had never before been tried. The doctor was amazed to learn that both children had recovered.

  Family friends heard of her success in the bush country and asked her to treat their child. As polio epidemics increased, so did reports of Sister Kenny’s unorthodox treatments, and other people sought her help for their children. Not all patients recovered completely, but many did, especially those who received treatment early in their illness.

  The Australian doctors ignored her successes and didn’t try her ideas. She opened her own small clinic, and her methods worked so well that she began training other people to use them so she could open additional clinics.

  The Australian medical offcials, however, refused to sanction her work. In 1938, at the height of a polio epidemic, they issued a lengthy report to the public which stated that Sister Kenny’s methods were mistaken and unnecessary.

  Discouraged by this rejection, Sister Kenny left her homeland in 1940 and traveled to the United States, settling in Minnesota. Word of her unusual methodspreceded her, and when she arrived in the U.S., she wasgreeted by newspaper reporters. Possibly because the newspapers created high public interest, doctors in the United States gave her a chance to demonstrate her methods.

  They were astounded by her results. Badly crippled patients showed rapid improvement if they began the Kenny treatments soon enough.

  News of her accomplishments spread, and many doctors in Minneapolis asked Sister Kenny to work with their polio patients. Soon her procedures were widely accepted, and in December 1942, the Sister Kenny Institute, a facility for teaching her theories and methods, was dedicated in Minneapolis. Eventually, her methods were adopted all over the world, including Australia.

  As I read, I realized how fortunate I was that by the time I was stricken with polio, the Kenny method was the standard treatment for cases like mine. Previously, many polio patients were put in splints and casts to keep their arms and legs straight.

  Polio causes muscle spasms which feel much like the familiar “charley-horse” cramp that people sometimes get in their legs. The spasms caused people’s arms andlegs to bend, and without treatment the limbs sometimes stayed bent permanently. The casts were intended to prevent that.

  I remembered the severe cramps that bent my knees when I first got polio and imagined how it would have felt if my legs had been put into casts. By comparison, Torture Time seemed like a picnic.

  Prior to Sister Kenny, some patients were left in casts for years. When the casts were finally removed, the patients could not move their limbs at all because muscles which are never used waste away. Because of the casts, even muscles not affected by polio became withered.

  I didn’t need to read statistics to know that the Kenny method worked; all I had to do was move my arms and legs. I was getting better, and hers was the only treatment I had received. If I had gotten sick a few years earlier, while Sister Kenny was still in Australia, my future would surely have been dreary.

  14: Good-bye, Silver; Hello, Sticks

  My walking sticks finally came. As I rubbed my fingers across the smooth wood, I felt as excited as I had when I got my bicycle. I could hardly wait to try them.

  “Go slowly,” Miss Ballard cautioned after she showed me how to hold the sticks. “Take small steps. Slow and easy.”

  I listened impatiently, eager to get on with the business of walking. At last the sticks were in my hands, and I was on my feet. Miss Ballard stood beside me, ready to help if I needed her. I was confident that I could stride forward on my own. I was Supergirl, ready to conquer the world.

  “On your mark,” I said.

  “Go slowly,” Miss Ballard repeated.

  “Get set …”

  “Easy,” said Miss Ballard. “Slow and easy.”

  “Go!”

  I lurched forward, unsteady and awkward.

  “Small steps!” cried Miss Ballard. “Don’t try to run.”

  I wobbled and swayed, barely able to keep my balance. It was not going to be as simple as I had thought.

  “It’s like learning to walk all over again,” Miss Ballard said. “You’ll be shaky at first, the way a year-old baby is, but you will do better with practice.”

  I took her advice about moving slowly—not because I wanted to, but because I wasn’t able to move fast. I had to think about the sequence of each step: lift right stick and right foot, move them forward, put them down. Lean on stick for balance. Lift the left stick and the left foot, move them forward, put them down. Slowly, slowly. Small steps. Concentrate.

  I felt as if bricks were glued to the soles of my shoes. Trying to lift and move my feet took every ounce of energy I had, and sweat trickled down the back of my neck.

  That first day, I took ten small steps, each one slow and deliberate. It was hard to coordinate my arms and my feet, and since my arms were still weak, it took great effort to move and control the wooden sticks. When Miss Ballard said I had gone far enough for the first day, Supergirl slumped with relief back into her wheelchair.

  “Good job,” said Miss Ballard.

  In spite of my weariness, exhilaration filled me, and I felt compelled to pop a wheelie twice as I raced proudly back to my room.

  Each day from then on, I went a little farther and a little farther. One small step at a time.

  The other girls watched my rapid progress with enthusiasm. There was never any hint of envy over the fact that I, who had arrived at the Sheltering Arms last, was quickly surpassing the rest of them in physical strength and ability. I suppose it didn’t hurt to have parents who treated all of my roommates as extra daughters, but I believe it was more than that. Even homemade peanut-butter cookies do not buy true friendship.

  We had the kind of camaraderie that I imagine exists between soldiers who have fought together during a long and diffcult war. In our case, the enemy was polio. Our battle medals were wheelchairs, back and leg braces, and walking sticks, and we wore them proudly. We were survivors; whatever handicaps we might be left with, polio had not claimed our lives or our spirits.

  Our common experiences of pain and paralysis, separation from our loved ones, and an unending struggle to regain the full use of our bodies made us members of an elite sorority that outsiders could never join. The success of one member became the success of all, and Shirley, Renée, Dorothy, and Alice cheered when they learned I had taken ten steps all by myself on my new walking sticks. Even if they would never walk with only sticks to aid them, my progress meant a victory for them, too, against our mutual foe.

  Two weeks after I got my sticks, Miss Ballard told me I was strong enough to use them exclusively. I didn’t need Silver anymore.

  “You gave me a lot of good rides,” I whispered as I patted Silver’s side for the last time. I blinked back tears, feeling foolish. I had looked forward to this day for months, and now that it was here, I was all weepy about leaving my wheelchair behind.

  Silver had carried me to school, distributed countless treats, and taken me safely to O.T., my sessions with Miss Ballard, visits with other patients, and special events in the sunroom. I’d had many fine times, including my thirteenth birthday, in that wheelchair. As I thought about them, I realized that even if I had never grown strong enough to leave Silver, I still would have been able to lead a happy life.

  I took Silver for a farewell trip, which ended with a high-speed dash down the hall, a screech of brakes, and a final shout of “Hi, yo, Silver! Awa-a-ay!” Teetering on the two rear wheels, I tipped farther back than I had ever gone before. It was a terrific last ride.

  15: Plans for a Pageant

  In spite of my physical progress, I grew unhappy as Christmas approached. We added holiday songs to our nightly choru
s, but somehow, while the other songs made me glad, singing Christmas carols made me lonely.

  Many nights, when our music ended, I lay in the dark trying not to cry as I thought of other Decembers. Mother always baked several kinds of Christmas cookies, and I knew I would soon have almond bells, spritz cookies, and Russian teacakes under my bed. But it wouldn’t be the same. I wanted to hang around the kitchen, begging for bits of raw dough to eat. I wanted to burst in the door after school, stamping the snow off my boots, and smell spicy gingerbread boys fresh from the oven. I wanted to sit at the kitchen table, surrounded by custard cups filled with colored frostings and tinted sugars, and help Mother decorate the sugar cookie Santas and stars. I wanted to help trim the tree and plunk out “Away in a Manger” on the piano. I wanted to shake my hoarded allowances out of my piggy bank and shop for gifts to surprise Mother and Dad and Grandpa and Art. I wanted to wrap up a dog treat for B.J. and watch him sniff it and drool on the wrapping paper. In short, I wanted to go home. If I couldn’t go home, I wanted to skip Christmas altogether and go straight into January.

  One night, as I lay wrapped in homesickness, I heard sniffling from across the room. Dorothy was crying, too.

  We were lifted out of our depression by the goodwill and holiday spirit of the community. Carolers came frequently, and there were two wonderful parties, one put on by the Shriners and one by a group called the Aqua Jesters. Both groups provided clowns, music, and treats. For a few hours, we all forgot that we couldn’t walk as we laughed at the clowns and applauded the magic tricks and musicians.

  Even with all this excitement, I begged to be allowed to go home for Christmas. “Just for two days,” I said. “Christmas Eve and Christmas Day.”

  “You didn’t get along so well the first time,” Miss Ballard reminded me.

  “It will be better this time,” I insisted. “If I don’t go home, Santa won’t know where to find me.”