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3 Reasons Cerebral Palsy Is About More Than Just My Legs

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It’s just my legs.

It’s not a lie really, more of an omission.

Growing up with cerebral palsy, I’ve been explaining my disability since well before I could walk. After all these years I’ve gotten very good at catering to various audiences.  Sometimes it’s a pair of kindly senior citizens in the street, more often than not it’s a curious child and their parents.

Information overload is to be avoided. Time is of the essence.

A quick and simple sentence that gets the point across, even if that point leaves something to be desired.

It’s easy to spot crutches, a wheelchair or a walking frame. It’s more difficult to see the state of my white matter, let alone understand the reams of paperwork that describe my condition.

It’s not so easy to acknowledge that my disability isn’t quite as one-dimensional as I’d like it to be.

Honestly? There’s a hell of a lot I’d like you to know about CP.

1. If it’s connected, it’s affected.

My entire body is linked with my less-than-perfect brain. Every muscle, every nerve fiber, every inch of me, from the top of my head to the tips of my toes. Thankfully, most of my problems are in relation to motor skills, particularly my legs and feet. Of course, my fingers get a look in too. But I’ve made my peace with never being a star seamstress or a master chef. It’s the little things that tend to bug me. I hate asking for the time because I’m not confident reading the clock face. I hate being seen as dopey when I lose my way in a familiar place due to topographical agnosia.

2. I feel everything.

Words might fail me, but I still feel. My lower limbs are just part of a different world, beyond control or comprehension. Usually, it appears as though I feel too much, because I react differently to stimuli. A friend approaching from behind to tap me on the shoulder will be treated to an awful shudder, which if I’m lucky, won’t turn into a full-blown spasm. Sudden, loud noises will trigger an adrenaline rush. This fight or flight response will cause my muscles to contract rather painfully, setting me on edge for quite some time. You have been warned: no surprises!

3. I’ve got a one-track mind.

Walking out and about can be quite tough. My friends and family might have learned not to engage me in deep and meaningful conversation while moving, but I can’t very well ask the world to stop turning. I’m sorry if I didn’t see our neighbor or hear the advert on the loudspeaker. I’m a little preoccupied with staying upright, so environmental processing has got to take a backseat. If I have any extra energy or concentration, it’s probably dedicated to worrying about a potential fall. Please be patient.

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Thinkstock photo by Eriyalim.

Originally published: September 9, 2017
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