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Monday, June 29, 2015

A Moment of Not Dealing with Disability

There are days I just want to walk. Moments, really. Moments that seemingly come out of nowhere. A sudden, usually if not always overwhelming urge to be able to simply stand up and go wherever I want without thought or hesitation.

It happened just yesterday afternoon at the ballpark as I looked down at the field. We were early, and the vast majority of the seats in front of us were empty. Kids and far too many adults crowded down by the fence or railing or just the barrier that separates fans from the field. They were seeking autographs, mostly from Nationals outfielder Bryce Harper.

But I really didn’t care about them. I don’t think I wanted to be with them, doing what they were doing. There was something about all those empty seats. They seemed a crisp blue in the sunlight, leading to the field of perfectly manicured grass. I was watching the Phillies Phanatic doing his thing out on the open field as a few players stretched and ran sprints. The big green guy seemed happy to playfully mock opposing players for the amusement of anyone who might actually be watching or perhaps for nothing more than his own entertainment.

As fast and unexplainable as the urge to walk around came, it went. I just wanted to move. It wasn’t even that I wanted to specifically do any one thing. I didn’t want Harper’s autograph. I didn’t want to hop the wall and play with the Phanatic. I simply wanted to walk around.

Of course, the source of my urge is as obvious and cliché as it gets. At least that’s what most of the people who actually read this will think as well as what my own logic tells me. I’ve spent most of my life using a wheelchair to get around. Before that it was a bigwheel and a pair of knobby knees. There were times I was convinced I didn’t care about walking. And other times I tried using one crutch and a walker.

But moments like yesterday aren’t about all that. They aren’t about anything realistic, or finding a way to do something despite my cerebral palsy. They’re not about accessibility. They’re about feeling the calf muscle in your leg practically screaming at you to get some exercise. They’re about suddenly wanting to feel the cement under your feet as you walk—just damn walk—down those isle steps. No one helping me. No one behind me with their arms under mine. No one on either side of me “having an arm.” Just me. Walking.

No, it wasn’t self-pity. It wasn’t even a “why me” day.

I had one of those about a year and a half ago. Yes, I remember it. In fact, it was New Year’s eve. I was on what most would call the vacation of a lifetime. In Florida, a house on the beach for a few days where my brother was getting re-married then off to Disney World for the first time in my life. We were in one of the bottom villas of a set of four. I could get right out on the patio and onto an extended deck that gave access to the beach.

Where I stopped. My freedom stopped.

Yep, I had a big fat pity party that day. Cried. Hard.

I couldn’t tell you the last time I did that. Had a pity party. I could probably figure out the last time I cried that hard. But to be honest I thought I’d left the pity party back in high school.

At 41 years old at the time, I was (and, I imagine, still am) supposed to be “over it.” I was born with cerebral palsy. I deal with it. I do what I have to do. I do my physical therapy daily, and if I miss a day, I make it up. I work to carve out a life that works for me. I write. At times I try to speak up about disability issues. I’ve accepted that the life I envisioned—even with full understanding and, yes, acceptance of my disability—isn’t going to happen. To her immense credit, so has my mom. The one person who deals with the life CP has left for me, for us, right alongside of me. I adjust my measurements of what happiness is, without—and perhaps this is pie-in-the-sky foolishness—giving up the dream of becoming a bestselling author with money to burn. A gorgeous wife is somewhere in that dream, but that’s another story.

But every now and then, every once in a while, I take a step back from it all and think, goddamn this sucks.

Sometimes being disabled is just one big pain in the ass.

I don’t know if it was my nephews and nieces running on the beach that got to me that day. That moment, really. Maybe it was the thought of attending yet another wedding and fearing I’d never find love. Maybe it was just another New Year’s eve and the emotions that come with that. Obviously, it was likely a combination of all of it and then some.

So, I cried. The type of cry where you just let it go…body shaking, sounds coming out of you that could be a whale call, some snot escaping. When you stop you feel like you need a nap. And I was fortunate enough to literally have my mom’s shoulder to cry on.

And I got over it.

This isn’t the writing of a disability activist or advocate—a title I’ve been given at least once. I’m not sure I even want that role. I figured out, I think, a few years ago that I’m a writer. That’s it. That’s what I can do. That’s where I can contribute. That’s where I need to focus my energy and where, if I ever do, I will find success. If at times my work says something that moves the disability community or movement or whatever, great. I hope to do that.

But as I peruse Twitter and the blogs of people who specifically don the cap of advocate, I recently came across the term ableism. It’s apparently our version of racism, and to my surprise the term has been around for a while. And I wonder, as we tweet and write at the top of our lungs about the injustice that people with disabilities often face—the latest issue seemingly piggybacking off the Supreme Court ruling giving homosexuals the right to marry to discuss the “marriage penalty” some people with disabilities face in losing benefits due to a spouse’s income—how this post will be viewed.

Am I being ableist against my own community for pining to be able-bodied? Am I rejecting my own identity?

The thing that scared me the most about yesterday’s very brief rush of emotion was that I didn’t even know how it would feel to walk. Again, to simply stand up and move freely. Independently. I don’t think I even realize sometimes how much thought, preparation, and adjustment, goes into every move I make. I have to do things a certain way to control my own movements, to avoid spasms, and, sometimes, to not call attention to myself.

It’s what we do. And most days, in fact, most moments, it’s just the way it goes and we deal with it.

This post is probably more like a journal entry. Something that helps me to write to think through the emotion of it. But I think I’m going to post it, as is, for the most part without my usual editing and letting a piece sit and so on. I wrote it first thing Monday morning, and hadn’t planned to write it until I sat down at my computer. Readers can see for themselves if I truly posted it without too much rethinking. I did try to write about this emotion shortly after the wedding, but it just didn’t work. The words didn’t come at that moment.

No great ending is coming to me at this moment now that the words did come. At the risk of horrifying myself and sounding like an after school special, maybe it’s just a reminder that in the midst of everything else we do as a community it needs to be OK when we can’t deal with our disabilities for a moment.
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