In 2020 Gillette Children’s Healthcare Press published Spastic Diplegia, an empowering and evidence-based guide for living a full life with this subtype of cerebral palsy that affects approximately 6 million people worldwide.
Featured in the book by Lily Collison (in collaboration with experts at Gillette) is her son, Tommy Collison, who lives with spastic diplegia. Tommy’s story, in his own words, is shared in the epilogue of Spastic Diplegia. He details how his love for writing provided him an outlet to navigate his disability while shaping his perspective on what it means to not be defined by a diagnosis.
Read Tommy’s epilogue below, and consider purchasing a copy Spastic Diplegia for yourself or a loved one. All proceeds from sales of the book help fund cerebral palsy research at Gillette.
“You see things; and you say “Why?”
But I dream things that never were;
and I say “Why not?”
Bernard Shaw, from Back to Methuselah
For as long as I can remember, I’ve thought most clearly while writing. When I was a teenager, I kept a blog and wrote about 1,200 posts in the space of three years. I wrote about everything and nothing at all: the classes I was taking at school, the books I was reading, the latest Broadway show I was obsessing about.
Growing up, I spent a lot of time thinking about how to be disabled without letting that one fact take over my life. As a teenager, I found it easiest to ignore my disability as much as I could. I wouldn’t mention it, and people mostly did the same. I hated those moments when I couldn’t ignore it—when I fell, when I got injured, or when I dropped something.
Of course, I couldn’t ignore it entirely: large portions of my teenage years were consumed by joint pain and sleepless nights. I spent hours in physical therapy and had two major surgeries. When I was 18, I realized I wanted to write something about it. So, over the course of a summer, I holed myself up in my room and wrote a short book. It was autobiographical in the sense that it charted the various surgeries and treatments I’d had, but more than that, it allowed me to work through what it meant to be disabled. There’s no user manual for having a disability, but I was trying to write the next best thing for myself. I named that thing Consider This, in part because it was what I was doing (consider this disability, if you will), and in part because of a line in R.E.M.’s “Losing My Religion,” one of my favorite songs.
I remember lying awake with joint pain one night in August. I couldn’t sleep, and, more annoyingly, I couldn’t figure out how to finish the short book I’d written. I was about to start my last year of high school, and the narrative of the book ended a few months before that. On the one hand, it felt like a natural stopping point, but on the other, it still felt like the middle of the story. What had I learned writing the book? What would I take from it?
I got up and wrote a letter, a sort of what-I-wish-I’d-known letter to the Tommy of a decade ago. I wrote about how to keep a disability in perspective and concentrate on what actually matters in life. I framed it as the letter I’d write if I had a child with spastic diplegia. It became the epilogue to my short book; I’ve included it below.
A lot has changed in the seven years since I wrote that piece. I can’t ignore the fact that I’m disabled, no matter how much I try (and I tried!). But I’ve gotten much better at knowing my own limitations and being comfortable enough to ask for help when I need it. Instead of staying quiet and struggling with something, I’m more comfortable around people, and I get more done.
I’m still missing the user manual for how to get through life with a disability. I’d write a very different book if I were starting it today, but I’m proud of how Consider This stands on its own.
When I was writing it, I had no idea that my mother would one day write a book about spastic diplegia. In a lot of ways, the two books are in conversation with one another across time. I hope Consider This is as useful for you to read as it was for me to write.
August 12, 2012
I owe everything I am today to my parents, so I can only hope to live up to half of what they are. They’re the most loving, caring, and dedicated parents anyone could ask for, and I hope I can be the same to you. Having a disability is tough, but you can handle it. I did. It was hard—probably the hardest thing I’ve had to do—but I did it. And so can you. Some days it’s unimaginably difficult to get out of bed and face the world, but it’s possible.
So, how do you beat your disability? You beat it by never letting it define you. I wasn’t a 14-year-old who had CP, I was a 14-year-old who loved drums, read every book he could lay his hands on, and probably played his music too loud. As people, we’re defined not by our abilities or disabilities—it’s our choices, our aspirations, and our attitudes that define us. So go out there and be outrageously passionate about something.
You beat your disability by knowing where you want to be—be that on crutches or walking independently—and then working your ass off to get there. You beat it by never settling for less than what you can achieve. You might have a disability, but don’t let the disability have you.
You beat it by setting goals. I could quote life mottos like, “Don’t wait for your ship to come in, swim out to meet it,” but nobody listens to those. That said, they are rooted in truth. Managing your CP isn’t something that’s going to fall into your lap as you sit at home moping: you have to work toward it. You beat it with pragmatism. It’s true, you’ll probably never be a professional footballer. Or an astronaut. Or a stunt double. Or a boxer. You’re faced with a choice: let yourself be constantly held back by it, or shrug it off and focus on all the things you can do.
And then, if you manage all that? You’ll have beaten it—and, more importantly, you’ll have the satisfaction of leading a full life despite your disability. And that’s an incredible achievement.
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