The Others: Being Disabled and Fighting the Good Fight
A week or two ago, I asked my sister how I was doing with my writing. She explained that while it was good, lighthearted and fun, I was painting a picture about disabled people that wasn’t necessarily real. It didn’t fully articulate the full length and breadth of what being disabled really is. Or to quote her more directly, “I like it, but you’re being kind of a pussy.”
So I decided to talk about the more serious side of being disabled, if only for this article.
The past few weeks have been unusually difficult for me, and I think that’s good to say. I think that’s fair. Not every day has to be great and not every reason for the challenges I face come from my disability. I really love holding a magnifying glass up to specific elements of my life and having some fun with them, but the truth is that we aren’t two dimensional creatures. A disabled person doesn’t just have disabled problems. We have the same struggles, the same obstacles as anyone else.
And then we’re disabled. In that order.
About two weeks ago, I fell over. Falling over for me is obscenely embarrassing because it’s not what you would think. It’s not like I fell out of bed or anything. No, I just leaned too far to my left side and couldn’t get back up. At first, you mostly just feel stupid. The reoccurring thought is usually something like, “Go me, you putz.” After a bit though, frustration sets in. My arm was dangling next to my controller and, if I could just swing it about one foot up, I could drive my wheelchair to get help. You try, fail, and try again. It doesn’t affect you for the first hour or so. To be honest, it’s kind of weirdly fun. I have a life challenge no one else does and I’m going to overcome it. Then I’m going to tell everyone how awesome I am.
Then, somewhere around the second hour, it starts to hurt a little bit. I happen to have an extremely exact time measurement on this event because I was stuck in my bedroom next to my talking alarm clock. My roommates and I share an acute hatred for this particular machine because it’s a little dumb. Sometimes you tell it to set the alarm to 6am and it does just fine. Sometimes you argue with it for about twenty minutes because it thinks you want the alarm to go off at 2am and you actually start to wonder if the machine is playing with you.
Anyway, falling over this time was painful because I pinched my nerve and my entire leg went numb. Pain is pain, though. We’ve all had it and it’s nothing to make a big deal about. I spend a lot of my time in a very obscure meditation that helps with this particular flavor of pain. Remove your mind from your body. Put yourself in another place. Accept that it hurts, but accept that you’ll ultimately get through it because, well, you have to. You literally have no other choice.
After all, the physical pain isn’t usually the worst part. There was that one time I got hit by a car and I actually remember thinking specifically, “Okay, the pain is the worst part of this one.” Then I laughed and then that hurt and then I got mad at myself for laughing. This one instance aside, it’s not usually the pain. It’s knowing that all I have to do is swing my arm up about a foot and I’ll be okay. It’s only a foot. And after three hours of trying, I couldn’t.
To me, that’s what it is to be disabled. It’s being in a completely stupid situation that no one else ever has to deal with, knowing how easy it would be for anyone else to get out, trapped alone with that screaming voice in your head, and then dismissing it five minutes after you get out of the situation because you can’t let that ruin your day.
Incidentally, my leg was still totally numb the next day so I had a slightly difficult time shrugging this one off. When I called my doctor, he said I probably didn’t need to go to the hospital because there was a 95% chance I had just pinched my sciatic nerve and nothing was wrong, and only a 5% chance there was something very wrong. As a big fan of mathematics, I understand that 95% is significantly greater than 5%, but I also wasn’t a big fan of waiting two weeks on that gamble. Fortunately, feeling returned to my leg about six days later.
Here’s the biggest challenge I’m facing (as it pertains to my disability) today. What’s supposed to happen is my muscles gradually decline in strength as I age, but that’s not what really happens to me. In my case, my body chooses a muscle and attacks it. Sometimes it’s my fault. A few years ago, I thought it would be really cool to be a vegetarian, so I tried it. Well, it turns out I wasn’t getting a proper amount of protein so my body attacked my jaw muscle and I lost the ability to chew. This was completely stupid on my part and admittedly the most frustrating struggle I’ve had because it was, in some context, my fault. And I’ll never get it back.
The newest muscles my body has chosen to attack are my biceps. This isn’t the first time these muscles have been the target of my disability and it probably won’t be the last, and that’s okay. So far, I’ve only won these fights. The secret? You force yourself to eat too much, even when-especially when you’re not hungry. It’s important that your body has enough nourishment that it doesn’t need to attack your muscles.
And then you have to struggle through it. It doesn’t matter that my muscles burn to type this article or that it’s somewhat tiring to drive my wheelchair around the room. What’s important is to keep working the muscle by doing normal things until it comes back.
I think, in closing, my biggest struggle is hiding the struggle. I don’t really want anyone to know that it’s hard for me. Partially because it empowers my disability, but mostly because it’s not that big of a deal to me. Yeah, I fell over for a few hours, but five minutes after that I was fine. I don’t want to waste my day talking about a situation that was unfortunate, sure, but is gone now. Part of it is, as a guilty confession, that I want to hide it.
I don’t want my friends and family to concern themselves with things that really can’t be helped. It’s deeply disconcerting to hear people talking about you in their concerned voice. I want the people I care about to have a positive experience around me.
I don’t want the girl I have a crush on to see the weaker side of me. I’d rather the struggle be about that unforgettably embarrassing joke I made that one time or that she and I can’t be a thing, not because of my disability, but because that’s just life.
I don’t want the downside of my disability to define me. That’s why I don’t talk about it and I think maybe that’s wrong. In writing this, I’ve had a lot of people reach out to me, publicly or privately, to share their experiences and it’s a good feeling to share in this with others. I think it helps to know others share in these struggles. I think it feels good to know we’re not alone.