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Cerebral Palsy Is Going to Kill Me (and Other Fun, Normal Thoughts)

No matter how much I try to control it, CP is this Regina George figure lording over my life, and I'm learning how to live with her.

by Ryan O'Connell
Jul 13 2017, 9:45pm

Illustration by Petra Eriksson

6-22-17

I'm in Provincetown, Massachusetts, a small little town on the tip of Cape Cod that is essentially a gay utopia. I was having the time of my life until I took a tumble today.

I used to fall all the time. I mean the 'eat total shit, have people swarm to ask if you're okay' kind of falling. I remember once walking to a house party when I was 22, stone-cold sober, and falling down three times. By the time I reached the party blood was dripping down my leg and pooling in my shoe. People gave me strange looks and the host, a friend of mine, immediately took me to the bathroom to clean me up. I told her that I was fine, fine, fine, can we get drunk now?

She looked at me with sympathy and I hated it. I wish I could've returned that look to sender.

Since I started working out three years ago, I've stopped falling. I have better control of my body now—I walk with my strength and purpose. I tell my boyfriend, almost bragging, "You know I used to be really clumsy and hurt myself all the time, but I AM NOT A SPAZ ANYMORE! I AM A SEXY ABLE-BODIED PRINCESSSS."

But, irony of all ironies, today I fell AT the gym. After an hour of intense cardio, I got off the elliptical and neglected to notice that there was another mini-step.

That brief moment of disorientation, followed by the realization that your body is about to hit the floor, fills you with the ultimate kind of powerlessness. It's the worst.

The fall was pretty bad. You could hear a pin drop in the gym, then the sound of a bunch of gay men collectively gasping and running over to ask if I was okay. I think they thought I collapsed from exercise, which, lol.

My arm hurt, I saw the bruise forming, and my lower back ached. Still, I smiled and said I was fine. As a disabled person, it's ingrained in you not to inconvenience the able-bodied.

Then I ran to the bathroom to spend some one-on-one time with the humiliation. When I came back out, I overheard a man telling someone at the front desk, "I think you need to make that step more visible. I've seen a lot of people trip on it."

A lot of people. Meaning people who don't have cerebral palsy. Okay. That made me feel better.

Only for a sec, though. I ended up spending the day in bed, feeling like a moody teenager, mad at my body for betraying me when I've done so many good things for it. One reason I love working out is that it makes me feel like I'm taming my disability. So much of having CP is having a body that doesn't do what you want it to do. And while working out has made me feel like I have a modicum of control, the reality is unavoidable, which is that no matter what I do cerebral palsy will always be the boss of me. It will always have final say. It will always win.


An early memory: I am young but not as young as you'd think. I see my neighbor across the street playing and want to join him, so I start running.

A car is rushing toward me. It always was but I never bothered to look.

The car screeches to a halt. I'm frozen, a queer in headlights, until my mom comes running out of the house, screaming.

"You don't pay attention, Ryan! You need to look both ways while crossing the street!"

This makes me angry. I resent it. I feel like I'm being treated like an invalid.

So I don't listen. I don't listen, and don't listen, and don't listen, until I actually get hit by a car. Age twenty. San Francisco. Mama always said.

People always ask me how it happened. They ask if it was a hit-and-run. Actually, most of them just assume it was.

Then I have to tell them: No, not a hit-and-run. I jaywalked.

"But it's such a busy intersection. Were you drunk?"

"No, babe, " I want to say. "I was disabled."

Here's what actually happened: I was running late for class. I saw my bus and, without thinking, ran across the street. I didn't check to see if it was my time to walk. I didn't check to see if the light was red or green. I just… went.

This had been happening to me my entire life. I'd be focused and in tune with the world and then, la di da, I'd space out.

I'd been lucky up until I was twenty, and then the inevitable happened.

I say inevitable because I'm not surprised it happened in the first place—in fact, I'm convinced it will happen again. If not hit by a car, then it'll be my absentmindedness that causes a fall.

Like the one I had at the gym, or even worse.

I recently went to go see an orthopedic surgeon in Santa Monica who's versed in all things cerebral palsy.

I told him about my tendency to go into a fugue state. He said that though my brain damage does affect my vision and spatial reasoning, there's no way of really knowing how much can be attributed to my CP versus the person I inherently am.

But there's no way a person without brain damage would've ran across an intersection without registering that the light was green and a billion cars were whizzing past him, I wanted to say. But I didn't because I didn't want to know what he would say back.

Another fun piece of information I learned that day: Although the life expectancy of someone with CP is that of an able-bodied person, you age a decade faster. Meaning that when I'm forty, I'll have the body of a fifty-year-old.

He tossed that bit off casually, as if it was NBD.

I asked him if there was anything I could do to not become Robin Williams in Jack.

"Just keep doing what you're doing!" he said.

Right. Keep working out five days a week, keep getting stronger and healthier, until CP pops its head in and ruins everything. Because, honey, if my CP wants me to fall, I'm falling. If it wants me to cross the street without looking both ways, then watch out world, here I come!!!

Sometimes I think of cerebral palsy as this Regina George figure ruling over my life. It's there to troll me, to cut me down to size. Like, I'll think we're getting along and totally on the same page—just days away from getting friendship bracelets, really—but then it'll do something that completely fucks me over.

Yep. Cerebral palsy is a total mean girl.


A stranger once commented on something I wrote about my disability with, "Don't be a victim."

It bothered me an embarrassing amount because, twist, I don't consider myself a victim. In fact, I spend every goddamn day trying to rewrite the narrative, trying to change the way cerebral palsy looks in the minds of others, trying to make my body as powerful as it can be.

Which I know isn't really healthy, either. Look, it's exhausting trying to be Super Disabled Man. Sometimes I think that if I could just accept that there are limits to my power and treat cerebral palsy as this thing working with me, rather than against me, I'd find some fucking peace.

That's all I want. To find some peace in this body. To not be at war with myself.

Let's see if I can get there.

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