In early February, I gave a talk at Clearview Elementary School to a classroom full of fifth-graders. I was there with my dad, who is the author of an awesome children’s book called “The Sidecar Kings.” We were visiting the class to discuss the book and share my real-life story of disability.
Speaking to kids is always an interesting experience, as they are still innocent enough to speak their minds regarding my disability. When speaking to these young audiences, I always wear a metaphorical helmet to guard against their uncensored questions.
And trust me, I’ve gotten some crazy ones.
Why can’t you pee on your own?
What’s wrong with you?
Do you sleep in your wheelchair?
Do you sleep?
Why do you talk like that?
Can you walk?
Can you read?
What if your house has steps?
I can’t help but chuckle when I get these questions, but there’s nothing offensive about them. They come from an honest lack of knowledge. That’s why I do these speeches, to help kids fill in the gaps about disability, allowing them to see that I’m just like everybody else.
At my most recent talk, a little girl asked me a question that, in the moment, didn’t strike me as particularly profound. She asked: What is the first thing you would do if you could walk?
I’ve received this question at least a million times, and I always give a quick, lame answer like, “I’d love to be able to skateboard.” Kids love that answer, because it’s something they can identify with, something they can imagine.
I watched their eyes light up with wonder as they pictured me climbing out of my chair and hopping on a skateboard. Plus, I have yearned for the ability to skateboard many times throughout my life, so it’s an honest answer.
But falling asleep that night, I began to ponder if skateboarding is truly the first thing I would do if suddenly cured of my disease. Is it even possible to know a real answer to this hypothetical question? My brain loves to dig up huge philosophical issues whenever I’m trying to sleep.
Thank you brain.
Would I run a marathon? Would I drive to the beach and go surfing? Would I jump on a trampoline? Climb a tree? Go swimming? Kick something? Try sky diving?
Each new idea gave me a surge of pleasure, as I imagined myself being able to explore the world with zero limitations.
In time, I’d love to try all of these activities. But I realized something important about myself while contemplating her question: My happiness is not dependent on such abilities.
When I was younger, this was not the case. I hated not being able to play sports and climb trees and ride bikes. To counteract this nasty feeling of inability, I developed adapted methods to involve myself in whatever my friends were doing. But there was always that tiny voice wishing I didn’t need to do things differently.
As I grew up, the activities I couldn’t do shifted to things like driving a car, attending parties at houses that had steps, and staying out all night like my other rebellious friends. Don’t get me wrong; I wasn’t plagued by constant sadness, but I did occasionally find myself thinking that life would be so much better if I could just stand up and walk.
Today, my feelings have shifted again. I’m now much more comfortable with the activities that I can and can’t do. Would I still like to go bowling without using one of the handicap ball ramps? Of course. But I no longer feel that physical ability is a requirement for a happy life.
So, back to the hypothetical scenario that led to this thought process. What’s the first thing I’d do if I woke up tomorrow completely cured of Spinal Muscular Atrophy?
I’d walk to my kitchen and make myself a cup of coffee. I love that jolt of caffeine into my bloodstream. It’s good for the soul.
Next, I would go outside and read a good book in the early morning sunshine, sip my coffee and listen to the world wake up around me. This has become a favorite activity of mine, and it helps my brain prepare for a day of work.
The rest of my day would consist of doing nonprofit activities with my wonderful co-workers, eating delicious food and jumping in the pool for a quick swim in the evening before making a fire outside with my friends.
That is what I would do first, if suddenly cured of my disease. No fireworks. No massive displays of physical ability. I’d just do all the regular activities that I currently love about my life.
Maybe there is nothing profound here, but I think it’s cool that my desires have adapted over time to be more comfortable and satisfied with my disability.
Our ability to adapt is an important one. We all go through stretches of time when life places us in undesirable situations. It’s easy to get caught up in wishing circumstances were different, but perhaps it’s more effective to focus on creating personal happiness no matter your current situation.
I’m never going to be a professional skateboarder. That’s a dream of the past, and it no longer upsets me. So from now on, when people ask me what I’d do with a miracle cure, my answer will be: I’ll wake up and make myself a cup of coffee.
Because this is the life I know and love.
Shane Burcaw is a Bethlehem local using humor to change the world. His column about life and disability in the Lehigh Valley appears occasionally in The Morning Call. Contact him: shane.burcaw@gmail.com.
