Small Steps Page 10

  Through the years, I corresponded with my roommates.

  Dorothy was carried, in her wheelchair, up and down the school steps each day until she graduated from high school. She got married, had seven children, and now has eighteen grandchildren and eight great-grandchildren! Until she retired, she was the senior receptionist at Courage Center in Minneapolis, a rehabilitation center for people with physical disabilities.

  Renée also finished high school and led an active life. For many years, she wrote a weekly column for her local newspaper, and she researched and wrote a history of her church. Renée’s condition worsened in mid-life until, unable to live on her own, she moved to a care center. Even living in such a restricted situation, Renée never lost her sense of humor or her zest for life. One year her Christmas letter was written from the viewpoint of her bed!

  Alice, too, graduated from high school, then moved to a home for adults with disabilities. She was secretary for the United Handicapped Federation in St. Paul, Minnesota, and sang in a church choir. Long after Alice grew up and moved away from the Sheltering Arms, her older brother decided to search for her. He remembered the little sister who went to the hospital and never returned, and after his parents died, he found her! Although Alice continued to live in the group home, this brother and his wife visited her and took her to their home for holiday dinners. So in the end, Alice had some family of her own. Alice died of cancer in 1993.

  Shirley lost her battle with polio. She died in 1955, just five years after our time together.

  Ten years have passed since Small Steps was published. When the book first came out, Dorothy, Renée, and I had a “polio reunion.” Carl and I drove to Minnesota, and Dorothy and her husband met us at the care center where Renée lived. We spent a happy day reminiscing about our time together at the Sheltering Arms.

  Renée died in 2005. Dorothy and I still keep in touch.

  My brother, Art, graduated from Carleton College and Harvard Business School. He had a business career with General Mills, retiring as executive vice president. Art married and has four children and seven grandchildren. He is now tall, gray, and handsome.

  My mother and father are gone now, but Mother was alive when Small Steps was first published, and she enjoyed giving copies to all of her friends. My parents were remarkable people, and I’m pleased that their memory lives on in the minds of readers who never met them.

  Tommy, my “Lone Ranger” buddy, disappeared from my life after I left University Hospital. I never found out if he got weaned from the iron lung or not. I don’t remember Tommy’s last name, and without that there is no way to trace him.

  I’ve been asked by several readers why I didn’t visit Tommy on the day I walked for Dr. Bevis at University Hospital. There’s a simple answer: I was not there on a day that had visiting hours, which were strictly enforced.

  Perhaps someone who reads Small Steps will know who Tommy was, and will contact me. I know it could happen because that’s how I found Dr. Bevis.

  When I was writing Small Steps, I was not able to

  locate Dr. Bevis. University Hospital, where I was his patient, no longer had information about him; there was no listing for him in the Minneapolis or St. Paul telephone directory; and the Internet was not yet a common means of searching for someone.

  After the book was published, I received a letter from a school librarian. She told me that a few years earlier she had given birth to a premature baby and had been helped by “a marvelous older doctor” named Dr. Bevis. She wondered if it might be the same man.

  I contacted the librarian to learn where she had lived when her baby was born, then I found a telephone number for Bevis in that area. When Dr. Bevis answered, I inquired if he had been an intern at University Hospital in Minneapolis, and he said, “Yes.” I was talking to MY Dr. Bevis!

  After I explained who I was and why I was calling, we had a long conversation. He told me of his early work with polio patients at the Sister Kenny Institute in Minneapolis, followed by many years as a pediatrician. I learned about his wife and his four children, and I told him about my husband and family. He asked about my parents, for he remembered them.

  I sent him copies of the book and after he read it, he wrote to thank me. We have corresponded occasionally ever since. In one letter he told me that he once had a date with Sister Kenny! Because we live at opposite sides of the United States we have not renewed our friendship in person, but I am glad to know that he had a successful career and a happy marriage.

  As I wait to learn someday about Tommy, I also hope that a reader will recognize Miss Ballard and put me in touch with her. I’ve been told that she married and moved to the East Coast, but I don’t know her married name or where she went to live.

  Since there is a photo of Miss Ballard in the book and because I do know her first name (Althea), I hold out hope that I will eventually find her.

  I’ve made dozens of new friends as a result of this book. Many are polio survivors who write to tell me how similar their experiences were to mine and to thank me for putting our history on paper.

  Patricia of Schenectady, New York, got polio five years after I did, when she was a freshman in college. She didn’t have a bear, but she did have a stuffed monkey named Jojo, who had a head made of some hard substance. When Pat came out of isolation, the nurse cut off Jojo’s head, washed it with alcohol, and gave it to Pat. Only the blue and yellow body got burned.

  Pat also wrote, “I was told to push the call button if I couldn’t breathe anymore. That was a fine idea, but I couldn’t reach the button when I tried, so I decided that I’d better just keep on breathing.”

  Although Pat was hospitalized for only one month, she remembers that her mother sent the doctor a Thanksgiving card every year for the rest of her life.

  Dorothy Young, who had polio at age eleven in Arkansas, never made a complete recovery but managed to raise five children and to accomplish things that she shouldn’t have been able to do at all. Dorothy shared a secret with me: “I’ve watched runners accepting their awards after marathon races on television, and thought to myself, I run my own kind of marathon almost daily. I’ve awarded myself a heap of imaginary medals along the way.”

  Dorothy’s attitude is typical of the polio survivors I’ve met or corresponded with. They have a determination to make the most of their lives, regardless of any lasting handicaps.

  Some letters made me weep. Bev Jennings of Bellevue, Washington, told me that her brother, Walt, died of bulbar polio in September 1948. He was only twelve.

  Bev majored in biology in college. After she graduated in 1954, she worked for Parke-Davis, a drug company, where she spent four years doing safety testing of the Salk polio vaccine. She wrote, “I am ever grateful to Jonas Salk and his workers for all they achieved. It wasn’t soon enough for my brother and you and many others, but thanks to their persistence, and later the work of Dr. Sabin, polio was conquered.”

  Audrey of Detroit, Michigan, got polio in 1939, before the Sister Kenny treatments were available. She had casts on both legs for a month but eventually went to a children’s convalescent hospital where she got therapy in a heated pool. It took more than five years for Audrey to fully recover.

  “It might sound strange,” Audrey says of her time in the hospital, “but those were happy days. We went to school every day. Entertainers would come out. I learned to swim.”

  I wasn’t the only polio patient who formed friendships with her roommates. Audrey still remembers all the girls who were with her in the hospital. They used to sing together when music was piped into their ward.

  No matter what age my fellow survivors were when they had polio, or how well they recovered, everyone who got the Sister Kenny treatments agrees on one point: we all hated the hot packs! Letter after letter echoes my description of the steaming wool cloths and tells how much the patients dreaded them. Everyone disliked the exercises, too, and they agreed with my name of Torture Time.

>   Shirley Perry of Orleans, Vermont, was six when she got polio in 1949, the same year I got sick. Instead of being hospitalized, Shirley was kept at home and treated with hot packs there. She remembers wondering why her kind, wonderful mother was burning her.

  Don from Udall, Kansas, remembers screaming when his mother raised his tight legs over his head as she did his therapy exercises after he was released from the hospital. How hard it must have been for loving parents to know that the only way to help their children recover the use of their muscles would cause those children great pain.

  Many people wrote to say they, too, had been a polio

  patient at Sheltering Arms. Barbara Hulsingh of Edgewood, Washington, even remembers Alice!

  Barbara arrived at Sheltering Arms three years after I went home. By then I was in high school, walking unassisted, working on the school newspaper and yearbook, and acting in school plays. I had met my future husband. Life’s possibilities stretched before me like an unending road and I raced forward with exuberance and anticipation, while Alice remained at Sheltering Arms in the same physical condition as when I left, except for being three years older. Once again I realized how fortunate I was.

  Pat Hofmaster of Sacramento, California, was a polio patient at Sheltering Arms in 1953. A senior executive with the American Red Cross, Pat exemplifies the determination of most polio survivors. She wrote, “Polio left me with paralysis in my left arm… . In spite of having to figure out some unique ways of physically doing things, I have led canoe trips on Lake Superior, annually back-pack in Mexico and Central America, enjoy my foot-pedal kayak, and look forward to the next adventure.”

  Every one of the polio survivors who wrote to me (and I had room to mention only a small percentage of them here) is a person I would enjoy spending time with. There were no cries of “Life isn’t fair!” Even those with severe problems sought only to exchange information. There wasn’t a whiner in the bunch.

  Teachers told me about classroom projects that they did after reading Small Steps. Jo Auchterlonie, a fifth-grade teacher in Wichita, Kansas, borrowed two wheelchairs and let her students sign up to spend half a day in one of them.

  The students wrote to tell me of their experience. “We thought it would be fun,” they said, “but it was hard. Our arms ached. We were slow. We couldn’t get into the bathroom if someone else wanted to come out, and we couldn’t sit with our friends. Sitting at a desk wasn’t always comfortable, and using a clipboard was worse.”

  Several students have asked me if I ever found out how I got polio. There is no way to solve that mystery. Probably I got it from someone who had such a mild case that they didn’t even know they had polio.

  Many teachers showed their students the 1998 PBS special about polio, “A Paralyzing Fear,” which is available as a video or DVD, and several played “Lone Ranger” tapes for their classes. One innovative teacher had her wiggly fourth-grade boys lie on the floor and pretend to be paralyzed while she read to them. Another invited a polio survivor to talk to the students and give them a tour of her special van with its wheelchair lift and hand

  controls.

  As teachers strengthened their students’ empathy toward people with disabilities, Small Steps led to some unexpected strengthening of family ties. Many grandparents reported being invited to visit their grandchild’s school to share their polio experiences, often stating that they had never before discussed this with their family.

  Other gratifying letters came from people who told me that reading Small Steps helped them cope in their current struggle with some other problem. One nine-year-old girl had been home from school with a painful case of shingles for five months and claimed the book made her determined to get well.

  Greg Immethun of Lees Summit, Missouri, broke his neck when he was eighteen and was paralyzed from the neck down at first, but eventually regained about half of his original strength. He told me the book helped him release some of the pent-up emotions that he had locked inside at the time of his injury, twenty-four years earlier.

  Greg wrote, “You said that you are in an exclusive

  sorority of people who have had polio. I hope you know that it also includes anybody who has been through a life-changing injury like ours was.”

  A different kind of nonpolio letter came from Ken Ptomey of Pittsburgh, Pennsylvania. Ken was a forty-six-year-old grandfather who was learning to read as a student at Greater Pittsburgh Literacy Council. Small Steps was the first book Ken ever read.

  When he finished it, he wrote to tell me of his struggles as an adult literacy student. He said, “I am able to identify with your physical disability and your strength because of my pain of learning how to read. It’s a disability for me when I trip and stumble through words, and through your book I feel hope.”

  Time after time, such unexpected tributes lifted my spirits, gave me motivation to continue writing, and made me feel that my life’s work is worthwhile. Whatever these correspondents gained from reading Small Steps, they returned to me tenfold.

  Forty years after the events of this book, I began to have muscle aches, foot cramps, back pain, and fatigue. Even more alarming, I began to lose strength in my arms

  and legs. I was shocked to learn that my problems were

  caused by my old adversary, polio.

  The condition is called post-polio syndrome. Thousands of former polio patients, including Dorothy, are experiencing similar difficulties. Decades after their original illness, polio survivors are reluctantly returning to the walking sticks, braces, and wheelchairs that they fought so hard to be rid of.

  For years I drew inner strength from my victory over polio, feeling that if I could beat polio, I could handle anything. It was painful to discover that the enemy was not vanquished, as I had thought, but had merely gone under cover, waiting to strike once more.

  My battle with polio is not over.

  As with the initial disease, there is no cure for post-polio syndrome. My muscles continue to get weaker, and I now use a cane when I’m away from my house. (My cane has cat faces all over it.) Because of fatigue and muscle pain, I’ve had to eliminate many activities that I used to enjoy, such as school talks.

  Although my struggle with polio continues, I no longer have to endure Torture Time, or pick up marbles with my toes.

  The physical problems are not as difficult to deal with

  as the emotional ones. Carl died in 2004; we had been married for forty-eight years. Like having polio, his death was a life-changing event that now affects every part of my existence.

  Healing is a painful process, just as it was back in my polio days, but my family, friends, pets, and readers constantly give me reasons to celebrate what I still have.

  Since Carl’s death, I’ve taken many small steps toward creating a new life, by myself. I’ve written books, I’ve traveled to conferences to receive awards, and I continue to help animals. I don’t feel the same unconditional joy that I used to feel, yet I am happy.

  My main hobby is reading. I also enjoy pumping my player piano and browsing in antiques shops. I live in a log house on ten acres of forest near Mount Rainier National Park in Washington State. My property is a wildlife sanctuary where my four grandchildren love to watch for deer, elk, rabbits, and many kinds of birds.

  My son, Bob, is a high school teacher who coaches volleyball and track. His wife, Pam, is also a teacher. My daughter, Anne, is a gymnastics coach and Girl Scout leader. Her husband, Kevin, has a video production company.

  My grandchildren, Brett, Chelsea, Eric, and Mark, all have books dedicated to them, as do their parents.

  Small Steps won many awards and honors. If I had to choose the one thing I’m most proud of that resulted from this book, it would be the many letters from children who said that because of Small Steps they appreciate their own good health and their loving families more than they used to.

  They tell me they now understand what’s truly important because I realized it wh
en I was at Sheltering Arms, and later put my memories into words.

  My sincere thanks for all the letters. I’m glad I shared my polio experiences with you.

  Peg Kehret

  March 2006

  Image Gallery

  My hospital roommates, Shirley (left) and Dorothy.

  Renée Anderson

  William Bevis, M.D.

  Some of the intern staff at University of Minnesota Hospital in Minneapolis, spring 1950. Dr. Bevis is third from the right in the second row.

  University of Minnesota Archives

  An iron lung at the University of Minnesota Hospital.

  Renée Anderson

  Alice (left) and Dorothy.

  Miss Ballard helping an unidentified patient.

  Dorothy Bremer

  Renée (left), Dorothy (center), and me:

  Christmas at Sheltering Arms, 1949.

  Renée Anderson

  My parents, Beth and Bob Schulze, in 1949.

  Elizabeth Schulze

  Art Schulze, my brother, 1948.

  Elizabeth Schulze

  In the summer of 1916, the first major U.S. polio epidemic occurred. New York City was hardest hit. When families with children fled the city, some nearby communities tried to keep them out, fearing children would spread the infection.