What It Was Like To Grow Up With a Disability

When I was one year old, I was diagnosed with spastic diplegia cerebral palsy. A mouthful, I know. To break it down: cerebral palsy is a blanket term for several different noncontagious diseases caused by brain damage that occurs prior to or soon after birth. Spastic means a tightening of the muscles, and diplegia means either both arms or both legs are affected. In layman’s terms: A injury I received in the womb damaged my brain and made it so my nervous system was constantly sending involuntary messages to my muscles in my legs to always contract. I was not able to walk without assistance until I was around four years old. When I finally was able to walk, both my legs were turned inwards, and I always walked up on my toes with my right leg (the worse affected.) In addition to this, I had a mild form of scoliosis. And if you can believe it, I was one of the lucky ones. My actual brain function was not affected, and neither were any of my upper body muscles, including my face, meaning I never had trouble eating or speaking. However, my life was still very different from the ones kids around me had.

I saw a lot of doctors growing up. When I was six, I had a life-changing surgery (a selective dorsal rhizotomy, to be precise) that drastically reduced a lot of the tightness in my legs. It was so intense my parents got me a puppy to make me feel better.

                                (Image credit to Peter Placr. And while CP did not take my eyebrows, for this picture they decided to mysteriously disappear)

But I was still different. Other kids my age would ask me why I walked the way I did, only to be shushed by parents or older kids who knew better than to ask questions like that. I couldn’t do a lot of the things other kids would do, like run or roughhouse. I learned to read early, so that’s mostly how I occupied my time. As I got older, I had to have another round of intensive procedures done, and as someone who’s always loved a spotlight, I milked every bit of attention I got for all it was worth. The recovery afterward was hell, though, and the surgery happened in May of 2008, which meant that my summer vacation was completely gone. Nothing puts the taste of vinegar in your mouth quite like being ten years old, laying in a hospital bed (we rented one and put it in the house that summer) and shooting daggers out of your eyes at the neighborhood kids playing in the street, like some wizened old crone.

As I’ve grown older, CP is less like the first thing people see about me and more like the facet of my person that they’ll find out about in due time. One of my favorite pastimes is making jokes about it constantly, especially around people who don’t know it’s all in good fun; the ultimate punchline for me is getting to watch someone squirm as I allude to how them asking me to carry a box that weighs more than five pounds is ever-so-taxing on my frail little body. Consider it reparations for the many years of being asked: “What’s wrong with your knee/leg/foot/walk?”

To which I happily reply, “Birth!” and then I limp away.