This is something that occurred to me earlier today at the doctor’s office. (It had been over a year since my last appointment at Minnesota Epilepsy Group, so it was time to see Dr. White to talk about medications and what might work better than what I’m taking now.) I don’t remember if anything triggered this particular thought process, but I know I thought about some friends of mine, Marie and Porter.
I like them, they’re a nice couple and they’re both on the autism spectrum. They have to deal with a constant barrage of people who think they’re broken or damaged, who want to find a cure to fix them and make them “whole” and they think it sucks. As it turns out, they don’t feel broken or damaged. They feel like themselves. They embrace their own existence and they’re happy.
I know of people who pray for me to be fixed, too. I have seizures, so they hope I get cured! And that’s not how it works. I understand that now.
I can’t be cured because there’s nothing wrong with me. Yeah, I have epilepsy, so what? Just because I don’t match someone else’s expectations of what “healthy” or “complete” or “whole” should be doesn’t mean I’m in need of repair. I just am. This is me, plain and simple. This is what you get. I’m Shawn, I have epilepsy, pleased to meet you.
I absolutely wish that I can find something to prevent me from having seizures, but that doesn’t mean I need to be “fixed”. I’m not in a state of broken-ness. You look at Shawn and you see someone with epilepsy. It’s part of who I am and that part of me ain’t goin’ away.
I accept that. I’m not searching for a cure. I don’t want one. I don’t need one. There’s no part of me that needs a cure. Something is causing abnormal activity in my brain just like it’s supposed to. You can look at it from a religious perspective if you’d like: God made me just the way I’m supposed to be. I’m perfectly imperfect. I’m Shawn, hear me roar!
… meow?
I feel like I should try to make this clearer, but I don’t think I can. I don’t fit the norm. I’m not like you or him or her or anyone else. I’m 6’3″. I have a cowlick on my chest. I have black hairs that grow on the fronts of my ears. They’re very strange, but will you ever hear anyone calling for a cure for cowlicks? No. Because it’s close enough to generic personhood that they don’t worry about it.
Even though epilepsy might not fit within that mold of generic personhood, it doesn’t mean there’s something wrong or broken about me. I’m just different. And that’s okay. I’m okay. I want to find a way to prevent my seizures, but ultimately, I ain’t broke, so don’t try to fix me.
