Five Pages a Day (11 page)

When I look back at this situation, I wonder why I didn't simply explain to my PE teacher that because I had polio when I was twelve, I couldn't do three push-ups. My muscles weren't merely weak; many of them no longer functioned at all.

I could easily have gotten a letter from my doctor, too, but instead I asked my gym partner to lie for me. She signed the paper saying I had done the three push-ups when I hadn't done even one.

The PE incident shows how my family and I felt about my polio disabilities. My parents wanted me to be fully recovered, and so did I, so we pretended I had no permanent problems.

After I was able to walk without walking sticks, I looked completely normal. No one meeting me would have guessed I had been paralyzed from the neck down. They wouldn't know that some of my muscles had been permanently damaged, leaving me with weaknesses that could never be overcome.

I never discussed my polio experience or my Lingering physical problems with any of my friends. Everyone around me acted as if I had no disability, and I never mentioned the problems that polio had created. Since I was treated like everyone else, it was easy to pretend that I was just like everyone else. At least it was easy until I tried to do three push-ups.

Perhaps this was good; perhaps not. I never used polio as an excuse not to do something, but by ignoring my physical difficulties, and by not talking about my life-changing experience, I acted as if this significant part of my life didn't matter.

My problems were more annoying than severe. I played piano, but I couldn't hold down the sustain pedal because the muscles that would have allowed me to keep my heel on the floor while I raised the ball of my foot no longer worked.

I couldn't use my diaphragm to breathe; I used my stomach muscles instead—a problem only when the high school chorus director tried to help me improve my singing. “Fill up with air!” he would exclaim. “Expand your chest!” When I tried to expand my chest, my stomach expanded instead.

I've always been round-shouldered because some of the muscles necessary to hold my shoulders back were paralyzed. My home economics teacher demanded perfect posture from her students. Every day she told me, “Put your shoulders back and stand up straight.” I never explained why I kept my shoulders back for only a few seconds.

I couldn't hit a golf ball very far, or a baseball, because my arms weren't strong enough. I didn't swim well, either. Instead of acknowledging the real reason why I was so poor at sports, I said I didn't like them. “I'd rather watch baseball than play,” I declared.

When I was in my fifties, I began having muscle pain, and the weakness that I'd always had in my arms and legs became worse. My toes often cramped, and I tired easily. When I read that many polio survivors were experiencing similar problems, I was shocked. Had my polio returned?

A group of doctors held a public meeting in Seattle to discuss the newly recognized “post-polio syndrome.” I went to that meeting.

Before it began, I talked with people in the audience about their experiences with hot packs, wheelchairs, and separation from their families. I felt a connection with these men and women whom I had never met before. As we spoke, I felt a great relief that I could finally talk about my polio ordeal.

Discouragement soon replaced the relief. The doctors told us that there is no treatment for post-polio syndrome. No miracle drug. No therapy that would put lost strength back into my limbs. The outlook, in fact, was bleak. I might continue to lose muscle strength until I could no longer walk unaided. One of the doctors, himself a polio survivor, said many post-polio patients have had to return to the wheelchairs they gave up so many years ago.

From age thirteen on, I had drawn confidence from knowing that I had survived a terrible disease. I believed that because I had beaten polio, I could do anything else I chose to do in life.

I had not conquered polio, after all. Later that month, a medical exam confirmed what I feared: post-polio syndrome was causing my weakness, pain, and fatigue.

I prepared for a rematch. This time, it would be a different kind of battle. I couldn't defeat post-polio syndrome, but I could control how I reacted to it.

It was time to tell my own story.

I began to write about my polio experience, to put into words what had happened to me all those years ago that I had never talked about.

Each morning I went to my desk and dredged up the memories. I remembered my hospital roommates, my doctors and nurses, my physical therapists. I laughed as I wrote, and I cried. My tears were for that long-ago girl who endured so much, and also because I yearned to have my father back, and my grandpa, and B. J.

For the first time, I wrote about the pain and the fear. The recollections poured forth as a psychological dam, built long ago, finally crumbled in my mind.

The first three publishers who read my book
Small Steps: The Year I Got Polio
turned it down. They didn't think kids would be interested in polio because it's no longer a threat to them.

I thought this was just a polite way to say no, that my book really wasn't good enough to get published.

If I had been submitting
Small Steps
on my own, I would have put it away after the first publisher decided against it, and it would have ended up unsold in my desk drawer along with my first novel and the book about Alzheimer's disease. But by then I had an agent whose tastes matched mine. Luckily, she was not so easily discouraged. Each time a publisher declined
Small Steps
, my agent said, “Their loss,” and sent it out again.

When Albert Whitman & Company agreed to publish
Small Steps
, my joy surpassed even the delight I'd felt at the acceptance of my first novel. This book was personal; it meant more to me than anything else I had ever written.

The publisher wanted to put a picture of me in my wheelchair on the cover. I looked through all the old family photos and found none of me sitting in the wheelchair.

I called my mother, who told me that after I could walk on my own, she had destroyed every photo of me in my wheelchair and every picture of me using my walking sticks.

“I didn't want to remember you that way,” she explained. “I wanted to put polio behind us.”

Her action reflected society's attitude at that time. In 1950, a person who couldn't walk was considered “crippled.” It was thought that such people could never lead as full a life or contribute as much as those without a handicap. President Franklin D. Roosevelt, who was also a polio survivor, hid his disability from the public, too, and his was harder to conceal than mine.

With my consent, the publisher put a picture of Dorothy and Alice, two of my hospital roommates, on the cover of
Small Steps
. This decision caused no end of confusion. Readers assumed, quite naturally, that since my book was a memoir, I was in the cover picture. Dozens of readers asked, “Which one is Peg?”

When the paperback edition was being planned, the publishers and I agreed that my picture should be on the cover, even without my wheelchair. A photo of me that had originally been in the middle of the book was exchanged with the picture of Alice and Dorothy.

When
Small Steps
came out, even people who knew me well were surprised to learn that I'd had polio.

For three years in high school, my friend Margaret and I spent as much time as possible together. We slept at each other's homes, sang duets, went to basketball games, and shared our innermost thoughts. After graduation, we kept in touch.

When Margaret read
Small Steps
, she called me. “You never told me about having polio!” she said. “In high school, I thought I knew every detail of your life, but I never knew about your most extraordinary experience. I can't believe it!”

I can't believe it myself. My only explanation is that my parents chose to “put polio behind us.” Because they never talked about my hospital experiences, I didn't talk about them, either.

Of all my books,
Small Steps
was the hardest to write, partly because I had to tell the truth. When I write fiction, if something doesn't work well in the story, I change it. I make up characters and motivation and events.
Small Steps
is about real people. It's more difficult to be honest about my own thoughts and feelings than about those of imagined characters.

In my case, the truth was liberating. Telling my own story helped me accept my past and made it easier for me to deal with my ongoing polio problems. If a young girl could survive such an experience and be emotionally stronger for it, then surely a mature woman can live with some physical problems and be emotionally and spiritually stronger, too. I've been far more fortunate than many polio survivors. I've had over fifty years of nearly normal mobility, and I'm grateful for those years.

After
Small Steps
was published, I got hundreds of letters from readers. One of my favorites was from a mother who told me her son began weeping at the end of the book. When she asked why he was crying, he said, “Because the best book I'll ever read is over.”

Many children wrote to me about the physical problems they faced. I heard from kids with multiple sclerosis, diabetes, broken bones, muscular dystrophy—even one child who described, in bloody detail, her cut finger.

As the mail from kids with physical problems poured in, I decided to write a book about a disease that some of them still have to battle, the way I fought to overcome polio. Once again, I started reading medical material. I considered lupus and cancer in addition to the diseases already mentioned.

In the end, I chose juvenile rheumatoid arthritis (JRA). I had read that two hundred thousand kids in the U.S. have this disease. My immediate reaction was that most children would detest that diagnosis because they think arthritis is a problem for old people. Grandparents have arthritis, not kids.

As I read about the problems that JRA causes, I was reminded of my own struggle with polio. I knew I could write convincingly about this disease.

My Brother Made Me Do It
is written entirely in letters from Julie, who has JRA, to her eighty-nine-year-old pen pal, Mrs. Kaplan.

The character of Mrs. Kaplan is based on my mother. She sees the good in every situation, she invents marvelous stories, she is loyal to friends and family, and she accepts what life hands her with humor and grace.

I liked Mrs. Kaplan so much, and she became so real to me, that I wept when I wrote of her death. Yet that character still lives because of my book, just as my parents live on in the minds of those who read
Small Steps
.

Perhaps I don't write books for my readers so much as I write them for myself.

{ 14 }

Research and Revision

A
lthough I write mostly fiction, I can't just make up everything out of my head. I still need to do research. Some books require more research than others, but I've had to do some investigation for every book.

I especially enjoyed the research for
Searching for Candlestick Park
. While I was writing that book, Carl and I flew to San Francisco and attended a Giants' baseball game.

Before the game started, I interviewed one of the ushers. He explained his duties and told me about all the items people have left behind when they leave the stadium. Much of what he said is included in the book.

As I sat in the stands, I wrote a description of the day, the crowd, even the small airplane trailing an advertising banner.

I went to San Francisco's Greyhound Bus station, too, and I walked the streets where my character, Spencer, walks so that when I wrote those scenes, I could do it accurately. I did the same thing in Seattle, where Spencer's journey began.

I took pictures of the ballpark in San Francisco, which at that time was 3Com Park. I sent those to my editor, to be forwarded to the artist. In case he used the ballpark in the cover art, I wanted it to look right.

Unfortunately, that was the only time my research included a trip to California to see a ball game. Most research is done by reading reference books, making phone calls, searching the Internet, or interviewing people.

The Secret Journey
is about a girl in 1834 who sneaks aboard a sailing ship, hoping to accompany her parents to France. Instead, she gets on a notorious slave ship bound for Africa. Here are some of the things I needed to find out while I was writing
The Secret Journey
.

I. What foods would be served in Liverpool, England, in 1834? 2. What coin might a sailor there give to a boy who helps him? 3. What did the waterfront area look like? 4. What were sailing ships like at that time? 5. What constellations are visible from the deck of a ship off the coast of Africa in June? 6. What is the temperature of the ocean at that time and place? 7. How do chimpanzees behave? 8. What are the symptoms of malaria?

I like doing research, and I strive for accuracy. Sometimes I need to ask an expert for help. I found out the ocean temperature for
The Secret Journey
by calling a friend who works for the National Oceanic and Atmospheric Administration (NOAA), and I got the correct constellations from an astronomy professor at the University of Washington.

Sometimes I ask an expert to read an entire manuscript before I send it to my publisher.
The Volcano Disaster
was read by the lead interpreter at the Mount Saint Helens Visitor Center, and
Terror at the Zoo
was read by two people in the education department at Seattle's Woodland Park Zoo.

One of the Woodland Park readers told me, “We like the book, but you made a mistake. You mentioned a kangaroo, and we have no kangaroos in this zoo.”

“Then what are those animals with pouches and big tails, that hop along on their hind legs?” I asked.

“They're wallaroos,” I was told. “It's a kind of kangaroo.”

Before I submitted the manuscript, I changed it to say wallaroo.