I have been writing about my life with cerebral palsy for about two years now. I’ve gone into specific details about romantic relationships, education, how boring physical therapy is, etc. But I’ve never just laid out the basics. Like, people always ask me, “If you could tell someone anything about your life with a disability, what would you want them to know?” I’ve gotten this question a lot and I’ll happily answer, but the truth is, there are several things I want you to know.
This article, “7 Things Most People Don’t Know About My Life With Cerebral Palsy,” was sent to me and inspired me to compile my own list. It also got me thinking about how different one person’s experience with a disability is from another. For example, based on Jessica’s article, I don’t require a lot of the assistance that she does, but it doesn’t mean that a lot of our experiences or feelings aren’t similar.
Here are my own 7 Things Most People Don’t Know About My Life with Cerebral Palsy:
- No, I don’t think about my illness or disability every day. I don’t know why this comes as such a surprise to people as if every time I’m doing something my disability is at the forefront of my mind. It isn’t. You can get used to anything if given enough time, they say. And remember, I was born this way, so I think that I’ve adapted well.
- There is a lot about my diagnosis I don’t know or understand. For example, I don’t understand why I’ve never seen a neurologist, though believe me, I really want to see what my brain and my brain activity looks like. And I don’t know why my experience is different from someone in my family with the same diagnosis. Every body is different and we’re all affected differently.
- Yes, he is my boyfriend. Not my nurse, not my caregiver, not my aid, nor friend, nor brother. And yes, our relationship is normal. I’ll happily talk to you about it, but generally speaking, it is none of your business.
- I’m probably in pain. Truth is, I’m in pain more often than I am not. But by this point in my life I’m used to it. I most likely won’t complain every day and I’m not really sad about it anymore. It just is what it is, and I’m trying to live my life. Please let me.
- I most likely won’t ask for help, but I’ll take it if you offer. I’m fiercely independent and no matter if I’m walking on my own, using a walker, or in my wheelchair, I’ve figured out ways to navigate the world. And yes, it is hard because most places aren’t very accommodating to me, but it doesn’t mean I don’t want to be there, that I can’t go or that I won’t find a way. So if you see me struggling, please hold the door.
- Just because I am using a different assistive device doesn’t mean my condition has changed. I am able to walk independently if I want to — after all, objects in motion tend to stay in motion, right? But sometimes I need to use a walker, say if I’m standing for long periods of time. And if I’m doing a ton of walking around that day, highly stressed, or I’m not feeling well, you’ll see me in my wheelchair. I’m not a different person based on any of these and I shouldn’t be treated differently because of it. I haven’t gotten suddenly better or worse; my needs just changed.
- I’m happy. I want to live as normal a life as I can. I attend college, I write for a living, I drive a car. I live with my boyfriend, we go out to dinner, to concerts, to see a movie. I experience the same ups and downs in life as everyone else. And I’m happy even with my disability.