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on disability

chronic pain, illness, and stereotypes


Because this is the question everyone asks, unless they're too polite to say it aloud: what is it like?

In a lot of ways, it's like anything else in life. It's different for everyone, but you adjust.

In other ways, it's like nothing I can ever describe to an able-bodied person. Not because I think you're insufficiently intelligent, but because the human brain is not wired to process constant, permeating pain. Pain was intended to be a teaching tool: put your hand on a hot stove, get burnt, your brain learns it's a bad idea to repeat that action. Pain that never ends, that you can never entirely forget exists? There's nothing your body can learn from that, it just fucks with your head. There's a reason why torture can get people to admit to anything from murders they've never committed to agreeing the sky is yellow and the world is flat, and why it quite literally breaks some of its victims.

Christine Miserandino, diagnosed with Lupus, came up with spoon theory as a way to explain living with chronic illness. (If you wondered why "spoonie" is in the header of my "about" page, this is the reason. It has nothing to do with the eating utensil.) In short, someone who's chronically ill starts the day with a limited number of resources, which in this metaphor ended up being spoons. Healthy people have an unlimited number, but someone chronically ill uses up at least one spoon for every activity: getting up in the morning, making meals, running errands, etc. Some days are better than others, but for a lot of us, we're out of spoons before the day is over.

I highly recommend reading her account, especially if you know someone with a chronic illness.

People tend to talk about a before and after: before losing a limb or being diagnosed with cancer or confined to a wheelchair or giving up a passion or career, and so on. For me, it was a lot slower than that. For me, the before and after was October 2016.

At first, the pain was gradual, back pain attributed to falling off horses one too many times. Equestrians use their bodies hard; it's not unexpected, and though having it start at high school is a trifle unusual, it wasn't so unusual that it raised too many red flags. Most people dismissed it—doctors included, who shoved prescriptions at me and basically told me to get over it. Then I got to New York, and since I was an adult and "growing pains" was no longer an excuse the doctors could use, I tried again. I had had time to educate myself about what the hell my body was doing incorrectly, and this time, at least people listened. We found no solutions, but they listened. They tried to find solutions.

It's been constant since sometime around 2011—it's in every joint, every muscle group, and it is not hyperbole when I say it's everywhere, and it never. goes. away. It's the first thing I process when I wake up; it's the last thing I register before I fall asleep. I am no longer able to even conceptualise what it feels like to not be in pain, nor do I have any objective measurement for pain, which is a frequent comment among the chronically ill. For nearly all of us, our baseline for pain is higher than a healthy person's, so a 10 on the pain scale for them is definitely not the same thing as a 10 on the pain scale for us.

But it's pain that couldn't and could never be fixed, so I grit my teeth and tried to keep my life going as much as possible. I kept training, kept riding, kept doing as much of what I could for as long as I could, because one day I wouldn't be able to any longer.

That day came a little faster than I'd hoped, and starting fall of 2016, it rearranged my entire life. Baseline pain levels graduated from "thrown through three walls" to "beat with a baseball bat and a crowbar and hit with a car"; being on my feet for longer than fifteen minutes made me want to die; sparring no longer involved just ignoring pain, it was more along the lines of having someone fracture my vertebrae and tear out half my tendons.

I have wanted to go into federal law enforcement for more than a decade. It's why I've kept training as hard and as long as I have, why I fought to keep my prescriptions as minimal as possible, why I did everything in my power to prove I was mentally and physically capable of handling myself in the field and protecting other people. And then I watched that goal slip through my fingers just as I was finishing my Master's degree. I can't explain what it's like to watch that happen, to mourn something that can't die and can't be buried. Most kids have a big answer to "what do you want to be when you grow up?"—an astronaut, a ballet dancer, a firefighter, whatever. That answer inevitably changes, but regardless of what the final decision is, sometimes that, too, must change, whether by choice or by force.

The thing is, it doesn't usually happen when they're about to be transferred to NASA, or holding the letter of acceptance to the Bolshoi or ABT, or three days from graduating the fire academy.

That's basically how it turned out for me, and unless I get a medical miracle in the next five years (not unreasonably, there's an age cap for application to field positions), I'll be bound to a desk for the rest of my career if I can hold a traditional job at all. I can fight if I have to; I can run if I have to; I can stay awake and on my feet for as long as necessary if I have to, but I can't do it on a daily basis anymore, and I don't know that I can do it reliably. I am not so arrogant as to believe that my goals are worth putting others at risk, and while I would fight for my life or someone else's today or a year ago or five years from now, it is no longer fair to ask someone else to trust me to have their back. I would, if asked; but if I were them, looking at me, I wouldn't ask me, either.

To lose the future I'd worked toward when it was literally right in front of me? It was depressing. It was infuriating. It felt hopeless. I almost walked away from everything.

The problem with invisible illnesses is...well, there are a lot of them, but the primary one is the adjective: "invisible". I haven't left my apartment without my cane in my hand since September, but I still get strange looks, because I "don't look sick". I get a lot of questions about how I hurt my leg. Most of the time I don't answer.

Disability defaults you into something fragile and broken and well beyond its expiration date. It makes people look at you differently, and I see it almost everywhere: one moment you're fine; the next you're an object to pity, and you now have a societal obligation to be an "inspiration", because otherwise you are worthless. Everything you do is now an incredible accomplishment and a model for everyone else, because "oh my god, look, you can do the equivalent of tying your own shoes despite being disabled!" It makes me want to punch people in the face. A lot. See how much you pity me then.

It also makes you a liar, because no one ever believes you, and half their questions you can't answer honestly. Conversely, you can't possibly know the limits of your own body, so other people should get to decide how much you're allowed to do; but at the same time, why the hell can't you just suck it up and deal? I can count on one hand the number of times I have answered the question, "how are you?" honestly in the past ten years; it is simpler and socially more polite to reply, "I'm fine" and move on.

Then there are the assistive devices. A lot of the people I know in circumstances similar to mine do not always use theirs (cane, wheelchair, etc.), and neither do I, despite the last few months. Except most able-bodied people see someone stand up from a wheelchair or take a step without their cane and automatically think, "you're just looking for sympathy, and you just got caught". Again with the face-punching.

I use a cane not because I can't stand up without it, but because it greatly reduces the amount of energy required for me to remain on my feet. It means I'm less drained afterward, means I maybe don't have to choose whether the last of my energy goes to a shower or to finding something to eat before I fall into bed and stop moving. I'm still picking and choosing more than able-bodied people ever will, but perhaps I have an extra spoon to work with at day's end. It sounds like a small thing. It's really, really not.

This is not something unique to me. If you're reading this and take nothing else away from it, remember this, please. Sure, there are scam artists who pretend to be disabled, and they infuriate me, because they tar all of us with the same brush. But they are the exception, not the rule.

I don't post this because I want your pity. That is, frankly, the last thing I want, and I am not the only chronically ill or disabled person who thinks that way. I'm dedicating a page to this because there's so much misinformation and stereotyping, and despite some shared elements, everyone's lived experience is different. This is mine.

All I ask is, the next time you see me, don't treat me differently than you did before you read this. I've lost a lot. I lost a lot of it while I knew you, and you weren't aware of it because I didn't want anyone to know. But I'm still me, and I'm not dead. I've had a lot of practise figuring out what I can and cannot do. Trust me to know my own limits.