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The Student News Site of Stony Brook University

The Statesman

The Student News Site of Stony Brook University

The Statesman


My life with cerebral palsy

Joshua Blake is a Stony Brook student with cerebral palsy. It is the most prevalent childhood disability, with every 1.5 to 4 out of 1,000 births giving life to a child with cerebral palsy.   COURTESY OF JOSHUA BLAKE

Where do I begin?

My knees crack and buckle with an ever so slight feeling that someone’s stabbing them with a knife. The bones in my fingers feel like rusty gears, grinding and scraping against one another with each movement I make. My lower back always burns with a fiery pain, like there’s sandpaper scratching along its underside.

It’s probably early signs of arthritis, but I almost welcome the pain. At least it’s something I can focus on.

I’ve always felt stuck in between something akin to pleasure and pain; it’s a bit hard to decipher myself most days. But after years of living with cerebral palsy (CP), I’ve learned a thing or two about this on-the-fence mentality I’ve had since I was a kid.

Cerebral palsy is a motor function disability that affects walking, speech, posture and muscle movement, and has no known cure. It’s the most prevalent childhood disability, with every 1.5 to 4 out of 1,000 births giving life to a child with CP, according to the Centers for Disease Control and Prevention (CDC).

I don’t have any speech issues, and I enjoy many freedoms with the disability lack, but as I grew up, something happened: I realized that I still wasn’t one of you — the normal ones. When I was 6, I had life-altering surgery. Every muscle in both of my legs was lengthened, loosening them enough to give me the ability to walk without assistance from my walker.

Once I turned 9, I was able to walk on my own, confidently. But the moment I was picked on for walking like a freak, I realized I wasn’t equal to the kids around me. Fifteen years later, and I still struggle with feeling like I don’t belong. Does my disability count, even though I can walk? Should I feel ashamed because others with disabilities are confined to a wheelchair or other mobility aids, and they’d only dream of being able to walk like I do? Is such a thought even true, or is it just a symptom of such malicious self-loathing?

Depression and anxiety have a funny effect on all of us. For me, sometimes it’s all I’m able to understand. The flipside to my self-loathing is avoidance of the fact that my disability is something I can address, but since I can’t rid myself of this disease, I don’t.

I’ve been hospitalized for an autoimmune disease known as ulcerative colitis, in which my body’s large intestine becomes inflamed, leading to cramps and bleeding, weight loss and anemia to name a few symptoms. I’ve been in the hospital for this condition four times. I’ve also dealt with blood clots over the years, and recently missed the first month of the semester because of one.

But I can’t take a pill that reduces the symptoms of cerebral palsy.

Sure, I can go to physical therapy, but, like my father said to me “It’s work,” to which I replied “Yeah, but does it really matter?”

That’s a question I find myself pondering quite frequently. For years, I thought it mattered that I had a disability in the context of finding love. I was proven wrong. For years, I thought having a disability would affect my ability to do well in school. I was proven wrong.

For years to come, I’ll worry about whether or not my disability will matter in finding a job — especially in journalism. I don’t drive because of a fender bender I caused when I failed to stop at a red light in time four years ago. Was it my disability that caused it? Should I find an internship before I leave school? But, what about that not-having-a-license thing, again?

Do I care too much, or not enough? Maybe it’s both and that’s why I’m terrified of where I might end up.

Maybe I wouldn’t worry so much if I wasn’t born with cerebral palsy at 25 weeks at a pound and 13 ounces. Maybe I’d be less afraid of myself. But then again, maybe I wouldn’t be.

If I believed in the idea of wishes, I’d ask of only one: give me one day to live without having my disability, and then ask me if I’d want to go back to how I was. I’ve said in the past that I wouldn’t change that because it makes me who I am, but that’s not true.

We make ourselves what we want to be, but I can never be a man without my disability.

I am, however, a musician, a writer, a poet, a songwriter, a journalist and many other things that all of you are. I just also happen to be disabled.

My true disability is how I look at myself — with shame, pity and disrespect, and I battle those thoughts every day. It’s what makes living so difficult and so rewarding at the same time — trying to find a way to walk that line.

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