Over the course of my life, especially when I was younger, many would say to me, “You’re so brave,” in reference to living while disabled. At the time, I also thought my disability lent me bravery. Now I have mixed feelings about the phrase. Living with cerebral palsy is the only life I’ve ever known. To be honest, I don’t necessarily think I’m “brave,” because of it. I’ve been brave because there has been no other choice…and if there were, if I had to pick between being brave and cowering away, I’m going with “brave” every single time.
This was the hand I was dealt, and there’s nothing anyone can do about it. Rest assured, that’s not a bad thing, and I’m not looking for sympathy or pity. I’m just being realistic. When I was called by the nurses to walk into those operating rooms as a child, I did. There was nowhere to run and hide or avoid it. Those surgeries radically improved my quality of life, and I like to think I knew they would even back then.
In the past my understanding of my disability may not have ran as deep, but some understanding was definitely there, because I think I’ve always known I was unlike all the other kids at school. When I became truly aware of the CP, I felt an even stronger difference. Again, different doesn’t mean bad or shameful. In this case it means unique. I was the only kid in class who had their own pediatric orthopedic surgeon; who had to wear AFOs all day except for gym class; who consistently had their own paraprofessional; who used a walker, stroller, and later, crutches as mobility aides.
This might be an unpopular opinion, but if I were given the choice to snap my fingers and get rid of the cerebral palsy, I’d do it. That doesn’t mean I spend my days being sad because I am the way I am, or miserable listing the things I can’t do because I am disabled. Anyone who knows me knows I don’t do any of that.
I admit that I do sometimes wish things could be better; that I wouldn’t have to worry, wouldn’t have to think about, be anxious about, or struggle with my walking; or wonder. To say that I don’t wonder about what it would feel like to not use crutches would be a complete lie. Of course I think about it from time to time…I just don’t let it take over my life. I am fully aware that the probability of walking unassisted is very small, so why bother yearning all the time? It takes away from the life I was given, the one that’s right in front of me and mine for the taking.
I’ve found that many people tend to dwell on things that are negative, and that when I don’t do that, I’m seen as “brave.” I’m not quite sure it’s bravery. I think it’s acceptance. It’s not sadness, and it’s not elation. The CP is something I deal with because it’s there, following me, forever tied to me. Everybody has “stuff” they deal with in life. The CP is one of mine. That’s all. This is not an effort to “downplay” my disability; I’ve been through a lot because of it, there’s no denying that. This is my way of saying the CP is there, but doesn’t define my entire existence. It’s not some grand sign of bravery, courage, or whatever else one may call it. I can name several others who’ve enriched my life that are much braver than me.
The Spastic Diplege 