Owning My Story: Past, Present, and Future

I’ve said before that I’ve been a product of the medical system my entire life. My circumstances required serious medical intervention since the very beginning. Nowadays, I’m what providers may call “otherwise healthy,” if looking beyond the scope of my disability. In other words, the presence of the medical system in my current daily life is not as conspicuous. I’m certainly thankful and grateful to be deemed “otherwise healthy,” because if I’ve learned much so far, it’s that good overall health is more important than pretty much anything.

Although I am now in overall good health, there does lurk a certain fear of the possibility–and reality–of future medical intervention as I age. Conditions like osteoporosis are a possibility if I don’t continue with weight-bearing exercises. I definitely know that going to the gym and regular physical therapy have to remain constants in my routine, and there are really no exceptions to this reality…as much as I might want to fight against it during my more irrational moments, or in times of frustration.

Before you say it: I know. I know that probably everyone around me has a fear of aging and the health changes that come along with that process. I understand that aging is perfectly natural, but I can’t help but think that aging while disabled is an entirely different, extremely multidimensional experience. If I look back to about 20 years ago when I was just a child and about to embark on a journey that would be full of major surgeries, I can say with 100 percent certainty that I’ve changed an absurdly large amount since then. I mean, anyone can change a lot in two decades, but I’m referring to my perception of living while disabled.

At five years old, I didn’t really know what was going on in regards to my medical condition, but I like to think that I had at least some small idea. I knew my pediatric orthopedic surgeon, who I still idolize to this day, was going to help me walk better. I knew how to operate my wheelchair and that wearing a body cast meant I truly couldn’t move. After a while, I realized my circumstances were different than those of my friends…that no, not everyone had a surgeon. Not everyone had regular physical therapists. My friends didn’t have to use a special stroller or posterior walker until they were eight years old and had graduated to Loftstrand crutches. By that time, I knew the story of my birth, and I owned the hell out of it. I felt like I had survived something, and well, technically I did. It made me feel brave, like, “run right into the ocean at the beach” brave. If I fell, I got right back up again, perhaps with scratches and bruises, but tolerable ones.

I have to be honest. Once I entered my teenage years, and later adulthood, those feelings of bravery and ownership began to slowly fade. I questioned everything. Sometimes I felt sorry for myself. Many a time, I was angry; frustrated; irritable; insecure. Instead of bravery, fear infiltrated my very core. Getting older meant I knew a lot more in many ways. I knew the risks of my actions and their consequences. I became afraid of falling, and I became absolutely terrified of failing.

Instead of completely linking my fear of failure to my academic career, I wonder if it actually stems from having cerebral palsy. Maybe getting good grades was me trying to prove something to myself, or maybe it was me overcompensating….that if I was never going to achieve being able to walk long distances unassisted, I could find fulfillment or success elsewhere. A sense of completeness, even. Maybe I keep trying to fight society’s flawed and ableist thinking that having a disability will somehow hold me back in life, that because of CP I won’t be able to achieve all my goals and dreams just like a non-disabled twenty-something would strive to do.

There’s nothing wrong with having a fighting spirit, just like there’s nothing wrong with being afraid sometimes. The key is to not let that fear take over and paralyze me. If I truly believe this in both theory and practice, then perhaps the fear of failing will eventually subside…and maybe I’ll realize that despite everything I’ve been through, my disability won’t hold me back. That even if I do fail in some way in the future, it’ll be OK…because in many aspects, well, I’ve already won.