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5 Things You Need to Know About Cerebral Palsy and Me

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Walking through a crowded square on crutches, I recognize nobody in the sea of faces. I don’t know them, but I’d be willing to bet that the majority are relatively clueless about the finer points of cerebral palsy. But I’m not really a gambling girl. I deal in reality, not misconceptions. There are a few things I know for sure about my condition. I think it’s  time to set the record straight.

You don’t know me, but there are a few things I’d like you to know about me and CP.

1. I’m not sick.

My disability is caused by a brain injury I sustained at birth. It has nothing to do with an infectious disease. It’s not contagious in the slightest. I might not be able to run around with you, but you don’t have to run away from me. Come a little closer and get to know me better. I promise I don’t bite.

2. I’m not terminal. 

I entered this world early because I was eager to get started. Having waltzed past death’s door as a shockingly small newborn, I don’t plan on going back any time soon. I’m not a ticking time bomb. Cerebral palsy isn’t going to kill me. We have time. We have time to be together. Time to leave our mark on this world. I won’t live forever – none of us will – but I plan on living a long life, filled with adventure.

3. I’m in this for the long haul.

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It’s forever and always: a 12-hour flight with a hell of a lot of turbulence. Cerebral palsy is a certainty. In a way, I believe this is both a blessing and a curse. Better the devil you know than the devil you don’t. I know what to expect, because I’ve never known anything else. I also know this: I’ll change hospitals, doctors, surgeons, orthotics and medical devices; my symptoms may improve, my mobility may come in leaps and bounds, I may take on a more positive outlook, but I will never be fixed, simply because I am not broken.

4. I’m living with a physical disability.

Sometimes cerebral palsy and intellectual disability are delivered as a dual diagnosis, but they do not always go hand in hand. I am bright. I am witty. I am on my way to being well-educated. I’m not boasting. I’m simply asking that you talk to me and get all the facts before you take it upon yourself to judge a book by its cover.

5. I am not cerebral palsy.

It’s an umbrella term. Everybody is different. We all function differently. We all cope differently. Looking for similarities and sticking labels on us will only help us progress so far. I appreciate your advice, but in the end it’s all up to me: my treatments, my choices. My life. I am my own person.

Cerebral palsy is something more than me. It’s something, but it’s not everything. You can’t complete a puzzle with a piece missing, but you can’t make a picture out of a single piece.

 

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