Create the Unknown: Coping With Disability

Create it. Exact. Concise. Controlled. But still leaving room for expression. For some people, it’s an art form of the highest level. For others, it’s something to be avoided entirely. But for me, it’s a way to cope with disability. But what is it, exactly, that I’m creating? Am I composing some new symphony, or writing a new epic? Perhaps I’m trying my hand at painting. If any of those were your guesses, you’d be wrong.

Yes, music and writing have always been two of my most important ways of expressing myself. But for me, they’re much more a part of who I am than just a way that I cope with disability. So what exactly am I doing?

I’m trying to create the perfect meal.

For me, cooking is all about having complete control over an environment, where I can make every last thing exact. It also allows me a good deal more creativity than baking. Which, paired with the fact that I’m one of those weirdos who doesn’t like dessert foods, is probably why I’m not as much of a baker. So why is that feeling of control over a safe and healthy environment, like cooking a meal, so important for me?

As a zebra, it can often feel like I have no control in my life. Between old symptoms flaring up and new ones appearing, it can feel a lot more like my body is in more control over my life than I am. I mean, let’s look at just yesterday. I had made plans with my grandma to have dinner with her. But then, yesterday, I had one of the worst fibro flare-ups I’ve had in as long as I can remember, so I had to cancel.

Those sorts of things build up. They’ll happen time and time again. And before long, some people are gonna start to see you as a flake. Maybe your job sees you as unreliable. Because, after all, you’re not the one controlling your life. Your health is. And when your health can take a nosedive for the worse on the flip of a dime, how are you supposed to be able to guarantee anything?

The experience is not universal.

I’ve had so many able-bodied people tell me when I try and explain this, “Well, no one can ever guarantee anything! You never know what could happen!” Yeah, true. But it’s not a statistically relevant probability that being up and about for more than an hour is going to cause you so much pain you’ll physically be unable to keep your eyes from tearing up.

Yes, nothing is a guarantee in life. Hell, there’s even a possibility, however minute, that thirty seconds from now the Sun is going to explode and the Earth will be destroyed. But is it statistically likely enough to matter? No.

The fact is, it’s very likely for my health to be passable one minute, and put me in the emergency room the next. And so when I can find an environment where it’s healthy for me to have complete control, it’s rather therapeutic.

So why cooking?

In order to create the perfect meal, I need to have complete control over everything. Every onion needs to be perfectly diced, every carrot evenly sliced. The sear and seasoning on the meat needs to be just so. The pan needs to be at just the right temperature with the exact right amount of oil. When I get to cook something, I am that food’s God. What I say goes, and there’s nothing the food can do about it.

And with cooking, if I’m in complete control, no one is getting hurt. I’m not controlling anyone else. And that’s what’s important- it’s not about other people at all. It’s about me, in an isolated situation, with no stakes, where for once I control the variables. So, I cook. I try to create the perfect meal. Because when I’m in the kitchen, I’m in control of what happens.

Until next time.

-Nick

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