A Personal Perspective on Living with Scoliosis

Writing with Scoliosis

This year I published my second novel, a story about a girl with scoliosis. History Lesson for Girls is not an autobiography, but the scoliosis aspect of the story is inspired by my own experience. I was diagnosed with a curvature of the spine when I was eleven, and wore the Milwaukee brace from then until I was thirteen.

Do people need to suffer to create? Of course not, and yet discovering I had scoliosis and wearing a brace most definitely had something to do with my becoming a writer. The day my parents and I came home from my first appointment with the orthopedic surgeon -- the day I got an X-ray and saw my spine’s eerie tumble into an S-curve for the first time, and the doctor sent us marching off to the brace-maker’s to be fitted for a Milwaukee brace -- was also the day I wrote my first poem.

It’s not that I hadn’t penned a few rhymes before. We’d learned about poetry in school, and both my parents were writers, so the concept of writing was always in the air, books were part of the household. But after that doctor’s appointment, contemplating a future that would involve wearing a brace twenty-three hours a day for what could amount to years, I walked upstairs to my room and closed the door. Like a zombie I got out a notebook and a pen and kneeled in front of my bed. Methodically, somberly, I wrote, trying to make sense of what was happening to me. It was the first time I wrote out of need.

Prior to the diagnosis, I’d had a small, reckless pride in my body. Just a couple of years before, I’d convinced myself that I could learn to jump from any height, you might almost say that I could learn to fly, if I only trained diligently, repeating practice jumps from higher and higher points on a containing wall between our house and the neighbor’s. I’d taken special pleasure in not requiring eyeglasses or braces for my teeth. This freedom from cumbersome medical aids gave me the gleeful feeling that my body was all right just as it was. More than all right: I felt lucky.

Through the months and years to come, it was my unfortunate circumstance to lose this faith in myself and in the physical world. My body had betrayed me; I could no longer rely on it. “Idiopathic” means of no known origin, and that’s the kind of scoliosis I had. Every two months I’d get a new X-ray, and every two months I’d watch the doctor scribble new, higher numbers on the slide, the worsening degrees of my curves. Outwardly I was altered as well. Scoliosis may have been the internal danger, but it was the brace that knocked off my public image. One year after I began wearing it I moved to a new town, and instead of being a normal or even pretty girl, I was viewed (or so I thought) as a freak. A sense of isolation brewed inside me. Would things have been different if I could have relied on my looks, and if the bones inside weren’t shaping me, changing me? The way things turned out, I became more of an observer, with a sense of doubt: two critical aspects for writing.

Thirty years later, I began to get my first ideas for the novel that would become History Lesson for Girls.

My original concept was to write about the friendship between two thirteen-year-old girls trying to survive the 1970s in an affluentConnecticut suburb. Both girls would have hard lives in one way or the other was my thought, and their friendship would be so strong that it could, for a time, save them from confusion and worse. Would Alison have scoliosis, like I’d had? At first I resisted this notion, in part because I didn’t want to get that close to my own life. In the early stages of writing, I even considered giving her some other disability -- something cinematic and romantic, say, like a limp -- but finally I decided what it would have to be. Scoliosis was what I knew and scoliosis was what terrified me, and sometimes as a writer it’s best to head toward what scares you the most.

I learned a few things from returning to this subject. On one level, it was ideal for fiction. Scoliosis never seems to yield to a pat resolution, and easy answers or tie-a-ribbon-around-the-story endings aren’t all that convincing for most readers (and not that fun for writers either). I had to plunge back into the ambiguity of what went on back then, by no means a comfortable experience.