Life with Cerebral Palsy

So here’s the thing. I have a disability called Cerebral Palsy and I’d like to take a moment here to talk about it.  I think there are a lot of misconceptions about this condition that I’d like to try to address.  But first, what is Cerebral Palsy (CP)?

CP is, at its most, basic a neurological condition caused by a brain injury.  In my case, this “injury” happened at birth. I was three months premature and as a result, I needed oxygen in order to survive.  The trick here is that no one really knows how much oxygen to give and too much or too little can be harmful to the brain. I’m not sure if I got too much or too little, but regardless it caused my CP as well as visual impairment, retinopathy of prematurity and most recently, cataracts.  Good times!

I am one of the “lucky ones” if you must put a label on it.  I’m not that keen on being called lucky, despite the fact that my CP could be much, much worse.  The fact is, I am affected rather mildly in comparison to what many people face when diagnosed with cerebral palsy. I walk with a limp and experience pain and stiffness.  I fall a lot because my balance is also affected. I am here to tell you that CP still affects me to a large extent, regardless of the degree of my condition. Mild or not, I am disabled.

And no, that’s not “differently abled.” While I appreciate the attempt to reframe the idea of disability into something more positive, I also resent it, actually.  It’s a little too cheesy, a little too saccharine for my taste. No there’s nothing wrong with me as a person, but there is something wrong with how my body functions, and I am ok with saying that out loud.

So what is it like? It’s like walking through quicksand with ankle weights on. Ok, that’s supposition, because I don’t really know what wearing ankle weights in quicksand is like, but it’s the best I could come up with. I feel weighted down, it’s often hard to move at the speed I would like.  The stiffness doesn’t help.  Too long sitting and it’s hard to get up.  But too long standing and I am in a lot of pain because of the tightness in my body.  A few years ago I went to Disney World with my niece and after two days of walking I needed a wheelchair because I just couldn’t walk anymore.

Those of us with CP often lack in muscle tone, and the stiffness and tightness make it hard to do everyday things.  I have trouble with buttons, some zippers, holding anything in my left hand, I’ll never ice skate or move very gracefully. Just walking to work in the winter is a challenge – one small snow bank is like a mountain range for me. And let me tell you, not all sidewalks are as clear as I need them to be to make my way in.  Even a few feet of ice on an otherwise clear sidewalk is enough to give me anxiety. Crippling anxiety.  I have had too many falls that were close calls to getting hit by cars to not be freaked out by ice and snow.

It’s tough, I’m not gonna lie. I don’t know what the future is going to bring for me.  It could mean a walker or a wheelchair if my movement gets worse.  But I’m gonna do my utmost to keep my body moving, to keep active so I don’t become a stiff shell of a person. If you’re waiting for some sort of inspirational ending, I don’t have one for you.  Would I change it if I could? Absolutely I would. In a minute.

And that, my dear readers, is your post for today.  Have any questions about CP, leave them in the comments and I’ll get back to you.

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