The Others: Being Disabled and Finding Hope

The past few weeks have been very big for me. Don’t get me wrong — when you have an ego like mine, every day seems pretty big. But something changed. They found a treatment for my disability. That actually feels like science fiction to type out, and yet it’s real. It won’t cure me, but here’s a quick summary of my life plan — don’t die. Exaggerating a bit (but honestly only a little). Instead of getting a little weaker every day — instead of everything getting a little bit harder, it won’t. I could live a normal length life.

Oh, God. I might even have to get a 401k. What is a 401k anyway?

When something like this starts to happen in your life, it gets frustrating because people don’t understand. My sister and I have (sometimes explosive) disagreements about wanting to be cured since we both have the same disability. It seems like a given to people that aren’t disabled that disabled people want and/or need to be cured. On my end of the spectrum, I very much do, but my sister doesn’t. Or, at least, not in the same way. To her, that would be like people going out and raising money to make people not gay or not black. The problem isn’t that people are disabled in the same way the problem isn’t that there are gay or black people. The problem is that we don’t accept people for who they are, so it becomes harder for us to accept ourselves. I shouldn’t want to not be disabled.

I should want to be me.

I, however, don’t see it that way. For the most part, you can spend your time trying to find the right way to say what’s in your head, but we’re limited by the words we use and how others understand them. Case in point, someone once told me something was “egregious,” so I Googled it.

So the thing this person was talking about was either 1) outstandingly bad or 2) remarkably good. Do with that what you will.

What I’ve learned in my life is that you can only be sure you’re talking about the same thing when you feel the same thing. So put it in your head, that one thing (or two or three — numbers in this context are arbitrary) that you really want. Do you suppose that people actually know what that is when they think about you? And when people think about helping you, are these the one or three or two (order in this context is also arbitrary) things that they’re helping you toward?

Being disabled is really hard because, not necessarily on purpose, we over simplify one another where we can. We see patterns in a world with an incomprehensible amount of data and create them by necessity. The problem with this is that we get it wrong. I think when people look at me, they see something different from the pattern and automatically assume that the core of what I want is to be healed. And they couldn’t be more wrong.

Except that they’re actually not wrong at all. The real world is complex in ways someone forgot to write down. Let’s take me for example since, you know, this is my blog. If I had three wishes, one of the things that actually matters to me most is being the best at my job. No, that’s actually wrong. I want people to know that I want to be best at my job. The reality of life is that, aside from that one person who happens to have won at this particular game, there’s always someone better than you at the thing you do all day every day. The point isn’t to be the best. The point is to always try to be the best.

Another thing I’d wish for is the ability to turn my brain off at will. This is a particularly odd wish and I’m actively aware of that. That said, last night I had a dream that I was a time traveling genius that was extraordinarily humble (…because humble is the thing that I am…) and my mission was to chase down an alien that was stuck in a time loop, appearing only on Valentine’s Day throughout time. This alien was particularly grotesque looking, basically the stuff of childhood nightmares. He looked exactly like this.

Horrifying, I know. And to make matters worse, if he touched you, you would automatically fall in love with the first person you saw (because this is a nightmare I happened to be having on Valentine’s Day). The only way to stop yourself from falling in love when he touched you was to consume sugar (your guess is as good as mine here as to the why aspect). Consequently, I decided to track down this guy for some help on the sugar front.

And just to be clear, I definitely did not track down this guy.

Let’s see. Where were we? Oh, right. So that’s when Willy Wonka and I shot E.T. with a bazooka from my time machine while eating Everlasting Gobstoppers.

…I know…I’m reading this too.

What I’m trying to say is that it would be really nice not to wake up at 2 AM and psychoanalyze myself to the point where it ended up on my blog somehow.

…So my third wish would be to fall in love (surprising no one that has ever read anything I’ve ever written … or spent five minutes talking to me).

The actual point is this. If I had three wishes, I wouldn’t wish that I wasn’t disabled. That said, if I wished I wasn’t disabled, at least two of those wishes might be more possible. If I didn’t have a disability, I definitely would be better at my job. I’d type faster. I’d be able to reach the computer to do the small things like, you know, turning it on.

If I didn’t have my disability, I don’t honestly think falling in love would necessarily be easy (betcha can’t tell I’m writing this on Valentine’s Day … like no seriously, I bet you can’t because this is just how I write on any other day), but here’s what I do know. I look weird. I mean, I have this great big head and these little bitty arms. I’m living proof that humans are direct descendants of the T Rex.

And I drink my beer through a straw … AND IN A WINE GLASS. #classyAF

It’s a very strange thing to wish to be normal. I don’t want to tell the story of how abnormal I am. Not really. I want to tell the story of someone else that isn’t normal. And how learning that became the best five minutes of my day, every day, because it was with her.

Valentine’s Day. Just saying.

The point, though, isn’t that there now exists a cure. There’s a treatment. I could get stronger. I could get a lot stronger. And that means that I get to do something that is so hard to let yourself do when half the time you want to give up: hope. And that’s wonderful in a way I don’t feel like I have to put to words.

And, at least for me, that’s really saying something.