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The Unpredictability of Living in My Disabled Body

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My body is many things: a form of transportation, a clothes horse, a hardcore hug dealer. My body also tries to kill me on a semi-regular basis. My body is an unpredictable yet alluring villain I love to hate. It lures me in with its promise of looking distinctly average in denim, then swiftly dashes my hopes by bloating to within an inch of itself, leaving me feeling and looking like a beach stranded whale. It betrays me over and over again.

My body is a disabled body. It might appear “normal” on the outside, but it’s really just a cleverly constructed meat suit that contains diabolical nonsense on the inside. I don’t often think of my body as being disabled; it can walk and dance and perform extremely under-par in yoga class. But inside it’s failing me. It’s sneaky. It scares me.

My disabled body can surprise and impress me with what it can withstand. Intense, searing pain, crushing and consistent discomfort, extreme exhaustion. It often takes all of those and more in its stride, or rather, in its slightly inebriated-looking stumble. It tolerates so much and leaves itself with so little. It runs on less than empty energy reserves, allowing itself to be pushed into things it really shouldn’t be doing. It still stands — OK mainly sits, but who am I to judge me.

These are the times when I’m proudly and secretly impressed by my body. Despite the pain and chronic symptoms it withstands, my body feels strong and powerful. I feel unbeatable and invincible, even when horizontal and in a hospital gown.

But then there are times I feel like my body is a precious glass artifact. One wrong move and it will shatter into a million pieces, the gallery alarm will go off and I’ll be billed for upwards of a million yen. My head never feels more separate from my body in these moments.

I’m often afraid of my own body. Afraid of it letting me down, disappointing me, embarrassing me. I know we are all in it together; head, heart, lungs, excellent rack and the rest, but my body often feels like a separate entity. It has a personality all its own, and that personality is often unpredictable, unpleasant, pushy and borderline incoherent. Trying to align my brain with my body is like attempting to corral a raging bull in the red PVC skirt section of Topshop. Believe me, I’ve tried.

When your head wants one thing and your body is suddenly incapable of enacting it, things can get very strained very quickly. Relations between my brain and body are generally on a low simmer, ready to boil over at the first sniff of nausea, or a stumble, or a collapse. I get so angry at my body. I rage internally and long for a new improved carcass that just did what I told it to do for once.

But like it or not, this is the body I’m stuck with. Despite it being an absolute nightmare most of the time, I am responsible for looking after it. It might frighten me, but the unknown always does. And that’s just it; I don’t know what it’s going to do from one minute to the next. That loss of control over something only I can steer is terrifying.

But like the best relationships, a little unpredictability can be fun, I suppose? So maybe I just accept that I might not always get to decide what my body does and doesn’t do, and make peace with it. Loosen up a bit. Although with a bowel disease, that might not be the best turn of phrase.

Originally published: July 22, 2019
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