This picture was taken in November 2011, two and a half months post-op from my fourth orthopedic surgery. I was 17. I captioned the photograph, “No hands,” and posted it to Facebook. The photograph’s reappearance in my Facebook “memories,” recently got me thinking about my progress since this photo was taken. At the time, I was in physical therapy twice a week with one of the best therapists I’ve ever had, who was at the helm of my recovery and rehabilitation.
When I went away to college out of state, however, naturally I switched to a new physical therapist. Rest assured, this therapist was a perfectly kind person, but by the time I realized he was not properly prepared to treat someone with cerebral palsy, it was “too late.” In retrospect I had severely regressed under this therapist’s care. Beyond poor balance and low stamina, I’d developed a strange yet very real fear of walking long distances, even with crutches, and navigating stairwells, too. Being that I happen to live in a four story brownstone, this fear grew to be debilitating. In order to get down from the top floor, where my bedroom is, I had to go downstairs sitting, which was both cumbersome and frankly, embarrassing.
More often than not, I can’t help but feel like even though I’ve gotten older, matured and thus have changed since then, I’m still stuck in the same place: stuck walking with crutches; stuck holding onto walls even in the rare moments where I can walk without aid; stuck with the threat of falling in literally any scenario….frozen, just like in the photograph. That probably sounds really depressing, but I honestly don’t mean it to be. My aim is to be as honest, truthful, and as raw as possible. Sometimes the truth isn’t pretty.
Like this one: I felt alone when I tried to answer these questions in my head:
What does my progress look like?
Is a future without crutches even possible?
Is my current physical state the best it’s going to get? Did I reach my “plateau” at 17?
Don’t worry. I have several effective coping mechanisms in place for when my attempts to answer these questions in my own head gets too paralyzing and dark. One of those mechanisms is humor; another courage; bravery; strength, perhaps in such a way that it compensates for the physical strength I lack. Lastly, there’s arguably the most important one of all: the appreciation and beauty of progress.
Such appreciation is really, really important. While I may still struggle with walking without crutches, or with my balance, or with physical strength, I don’t let my CP stop me from doing certain things. As I got older, my relationship with my disability and my body began to change. I became way more comfortable. I started wearing more and more bikinis to the beach even though a long scar sits on each of my hips. I started taking risks by putting myself out there more. Eventually I met a wonderful man and fell in love, let myself be loved, and once in a while see myself through his eyes.
I refuse to let my disability trap me into thinking I’m not good enough, not worth it or weak. If that sounds exhausting, it’s because it is…but the fight is always worth it.