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What Kind of Survivor Do I Want to Be?

by Louise Shelby

Author of Article photo

When I reached adulthood after surviving childhood cancer, I had to deal with many of the long-term effects of my treatment. There was always another conundrum that couldn’t be solved. At times, it was overwhelming to know that so much was wrong with me. I talked to other survivors who felt the same way. Some were full of anger; others had become mired in the anguish of their cancer situation.

I knew how easy it was to be overcome with anger and anguish. I had fought those feelings many times. Sometimes it just felt good to wallow in self-pity, but there always came that moment when I suddenly shouted, “Snap out of it!” This was a dangerous place to loiter.

I had an important decision to make. What kind of survivor did I want to be? How could I find grace and dignity in this collection of loose nuts and bolts? To begin with, everything that I knew about my treatment had been told to me by my parents. People seldom asked me what I thought; everyone assumed that a nine-year-old girl couldn’t possibly grasp the heaviness of cancer.

As a result, much of what I thought I knew or felt about my cancer had come secondhand. Deep in my psyche, I was aware that the insights and concerns that had haunted me were still there if I was brave enough to pull them into the light and see them with all their fangs and claws. There had been so many things that I knew not to say out loud.

I knew how easy it was to be overcome with anger and anguish. I had fought those feelings many times.

After a few months, I began to wonder what other childhood cancer survivors had written. I had read Autobiography of a Face by Lucy Grealy. It was a dark account of Grealy’s battle with bone cancer. Shortly after the book came out, Grealy died of a drug overdose. I didn’t want to be that kind of survivor. However, the more I looked for stories of childhood cancer survival, the less I found. Childhood survivors were not writing books. The idea that none of us was telling our stories seemed ludicrous. How could we expect anyone to understand what had happened to us if none of us were willing to talk about it? I had been going first in the cancer world all my life, and it was time to go first again.

While working on my book, I went to a camp for survivors of adult cancer. I met a woman named Amy who had been a nurse in Vietnam and spent nine and a half years in a wheelchair after a helicopter crashed on top of her. She had been exposed to Agent Orange, and she’d had cervical cancer, breast cancer, and ovarian cancer. Her doctor had also found breast cancer cells in her spinal fluid, and the treatment would probably put her back in the wheelchair. Amy had every excuse to hide under the bed and never come out again. No one would blame her if she shut the door forever, but she didn’t.

I asked her how she could keep going, how she could keep putting one foot in front of the other and not give up. Amy looked at me and said, “It’s very simple, Louise. You either get busy living, or you get busy dying.” That was it, no frills or dressing, just the plain, honest truth. It was a line from the movie The Shawshank Redemption, but it was just as true in the real world as it had been in the film. There are times in life when, if you don’t make a conscious effort to move forward, your soul stagnates. Even if you can only take small steps forward, they are steps in the right direction.

Now I knew how to survive with grace and dignity. Each year, I make a life list of things that I want to accomplish while I’m still on the planet. Some of them are simple, like drinking hot chocolate in the snow. Others are more complicated, like going to see the California redwoods. The important thing is that life goes on and I don’t miss a moment of it. Each birthday is a celebration of another year on this planet.

♦ ♦ ♦ ♦ ♦

Louise Shelby is a 37-year survivor of rhabdomyosarcoma living in Austin, TX.

This article was published in Coping® with Cancer magazine, May/June 2008.