Some thoughts from an invisible monster

A slightly tweaked version of this piece appeared on Daily Kos

The funniest thing I do is watch people and how they react to me. It’s not just the chair – it’s the hand-controlled truck, it’s the handicap accessible apartment. Just seeing someone eye all this medical and accessibility equipment and gape all curiously makes me laugh inwardly. Has no one seen a shower bench before? A truck’s wheelchair lift? I can’t even tell you how many times I’ll be out in public, at a grocery store or movie theater, and someone just stands and stares while I use the lift to swing my chair out of the truck.

I attract crowds.

It’s like I always have a captive audience wherever I go. Everyone wants to stare at the poor little handicapped kid. And it’s strange – people have a way of looking right at me, of standing and watching my life play out; people are invasive, but even with the focus on me, people always look past me. They always look past what I’m actually doing. When I get out of my small apartment with its mostly bare, white walls and go drive somewhere, I manage to get myself across the city on my own, in my own truck with my own wheelchair lift. Then I can even get out of my truck and go inside these places, talk to people, get groceries, do everything I need to do… but somehow, people only see the poor crippled kid.

I would like to know why anyone would feel sorry for me, and it seems to be quite a bit of the people down here in the backwards abyss that is south Alabama, blanketed with humidity in the atmosphere that leaves anyone feeling choked. Honestly, I feel like it’s a huge waste of time to feel bad for someone in my situation, as seated as I may be. Do you know how many people have a worse life than I do? It’s a lot of people. Please don’t waste time feeling sorry for some guy who’s sitting down and still managing to do what he wants to do.

Feel bad, if you must, for the people who won’t try. The people who think it’s not worth it. The people who have just given up. And it’s so many people. You don’t have to go out to make a difference. I’m always surprised to hear from nurses and doctors who have worked with paraplegics for so long that it shocks them that I’m so active. I mean, what else is there to be? Do they expect me to lie around in bed all day feeling terrible and wishing I could walk? I’m not gonna walk, not ever again, and that’s the way things are. But who cares? What are the important differences between people who can walk to whatever places they want to go in life and people who wheel to those places? Can anyone think of any? I can’t. What matters is what you do. not whether you’re sitting down or standing up when you do it. It’s not even where you go. If you even leave your place to do what you want. It’s just not.

And I’ll always do things. Sitting down has done literally nothing to keep me from experiencing life the way I want, with the exception of the frustration I often feel from my lack of having local friends. Even there, though, I unquestionably have the best friends you could ever dream of having. They don’t live nearby but they treat me better than most of my family and all of the strangers here. They treat me like a real person with thoughts and feelings beyond just “how is your handicap doing today, Scottie? Just was curious since you haven’t mentioned the whole wheelchair thing in awhile. You’re in one, you know. Just to remind you.” I’ve never felt “disabled” with my friends. Never. My friends have done more for me than you will ever know – they mean more than I could ever just type out in a single piece of writing.

However, I was discussing my crowds of swarming fans I have here. Now back to your regularly scheduled programming.

People love to look. Watching me, I guess, is entertaining, or fun, or tragic. All of the above. If you’re just watching, it’s like a short movie. A sitcom. A few minutes of emotional involvement and sympathy, and then you can go about your day and forget the experience. Maybe you tell someone about it. Maybe they feel bad, too. You can keep it going if you try hard enough. With all the caring you’re soon to see a river of everyone’s sympathy tears. A flash flood. And then it’s over. It’s easy to care when you know ahead of time it will only last a minute. It’s easy to share someone else’s story, to make other people care too; it’s easy when it’s not your friend and you know you don’t have to reach out to anyone. You never have to understand, to feel empathy, to ask any questions. You never have to know my name. And still, your friends love you, because you care. And you get a good cry and attract attention of your own.

I’m glad that people have a keen interest in how my wheelchair lift works and how I can get in and out of said sitting accessory, but no one thinks to ask me any questions. No one wants to know what my life is like. No one ever wants to get too close to the poor, poor cripple. But everyone wants to stare.

I’ve seen the best sympathetic looks. Worthy of a photo-op, really. That alone is worth being paralyzed. When everyone knows they’re being watched in a crowd of sympathetic onlookers – because it’s never just one person staring, why stare with a look like that if no one can witness the performance? – they try so hard to look so pained. Because that’s the human response. But everyone is driven by curiosity. No one can help but stare at a car crash.

But nobody ever wants to know what happened. If I were ever asked, I don’t even know how I’d react. I would feel such immense happiness I wouldn’t know how to handle it. I know it’s on people’s minds. I know everyone wants to ask me. I know they’re holding back. But But satisfying their curiosity once and for all is just something that never happens.

I would be so happy if someone asked me what happened, I would probably cry.

I feel invisible when people pretend like I’m not sitting down unless they need to look at something pitiful. My favorite fiction book anyone ever wrote talks about this feeling. It’s about a supermodel who gets her face shot off and then road-trips with her friends, taking drugs and dosing them with hormones along the way. From Invisible Monsters by Chuck Palahniuk:

Until I met Brandy, all I wanted was for somebody to ask me what happened to my face.

“Birds ate it,” I wanted to tell them.

Birds ate my face.

But nobody wanted to know. Then nobody doesn’t include Brandy Alexander.

Just don’t think this was a big coincidence. We had to meet, Brandy and me. We had so many things in common. We had close to everything in common. Besides, it happens fast for some people and slow for some, accidents or gravity, but we all end up mutilated.

Birds ate her face, and I wear t-shirts saying “Keep Staring I Might Do a Trick.” We do what we have to do to deal with people. It’s the way you cope that matters. It’s the ability to adapt.

And then, of course, when people I’ve stumbled upon do talk, it’s always “can I help you out with something?” It’s “here, this is how you open this door, it swings the other way” because sitting down means you don’t know how to open a door. It’s tragic, really. You sit down and suddenly all cognitive function ceases.

Someone should work on a cure for this.

And, people always want to offer suggestions. “You can be a Wal Mart door greeter!” And, “you know they have wheelchair basketball!” And “you know there are people who can win marathons even in chairs!” No, I can’t even imagine! Someone can win a race using a chair that is propelled by wheels? Oh my.

That’s why this is so relatable:

“You know,” Evie tells me across a stack of Vogues, and Glamour magazines in her lap she brings me, “I talked to the agency and they said that if we re-do your portfolio they’ll consider taking you back for hand work.”

Evie means a hand model, modeling cocktail rings and diamond tennis bracelets and shit.

Like I want to hear this.

I can’t talk.

All I can eat is liquids.

Nobody will look at me. I’m invisible.

All I want is somebody to ask me what happened. Then, I’ll get on with my life.

And then, there are the guys.

You know what I mean: the guys who need to be seen helping the poor, defenseless crippled kid. They need all women everywhere to pay attention. Because they’re so good-hearted and helpful, even to unfortunate souls who can’t do anything but sit down. And we all know how women can’t resist seeing guys assisting a crippled person get into a vehicle. Or open a door.

Or, you know, something.

My friend Michael recently suggested I deal with this awkwardness in the only rational way anyone can approach it without clawing their eyes out: a snarky Craigslist ad announcing my goodhearted effort to assist desperate single guys in this endeavor – for a price, of course. It would read:

Are you having relationship problems? Are your straightforward attempts to woo women not working out so well? I am a paraplegic and I have something to offer you. It could change your life. I have found the true secret to gaining attention and respect from the opposite sex: I will drive to the location of your choosing and allow you to help me across the street in front of a gaggle of ladyfolk… for twenty dollars.

For fifty I will thank you profusely.

For a hundred I will pretend to cry.

Because really who doesn’t love screwing with people?

So this is an illustration of what life is like. This is the complicated mess of conflicting thoughts and inner processes that go on. This is the strange cognitive dissonance. I’m invisible – my disability is invisible – when someone’s up close. But when they can stand far away, it’s the only thing they notice about me. No one sees me but everyone looks at me.

This is how it is. Just thought you should know.