by Brian Rivera
They say that we are the heroes of own stories, and I can’t help but wonder what I’ve done wrong. From my experience, I’m anything but.
I’m known as the Skeleton Man and that isn’t a very heroic name at all. I wonder if some of us exist as wandering villains, simply so that others can be the heroes of their tales.
After all, how can you be the hero if there is no horror to overcome – no wrong to right?
I wonder this as I pass through downtown Denver on this beautiful, 72 degree day in February, a rare and welcome phenomenon that usually makes others happier. Except, on this day, it doesn’t. People pass me on the streets and their eyes dart away, trying not to have seen me, holding their gaze deliberately locked in any other direction. Until their eyes sneak a second glance, quick and hopefully unnoticed. Parents reach for their children and lift them away from me to keep them safe, scolding them for not staying closer. When I meet strangers, they do not shake my hand. They reach out, trembling as their palm reaches toward me, and then they withdraw the offer before I have the opportunity to reciprocate.
None of their reactions are unexpected, nor unreasonable. I look like a skeleton. I have a condition, a disease, that prevents my muscles from growing and my body holds very little fat. I am, for the most part, skin and bone. During the day, my lack of strength confines my 95 pound body to a wheelchair. And at night, a series of machines pump oxygen into me to keep me alive.
I often wonder why I unsettle people. I understand that I’m different, of course. The only way to evaluate a stranger, upon first encounter, is by seeing what they look like. Tall. Short. Beautiful. Terrifying.
Yet, I look like what everyone else is. A skeleton. Beneath a model’s elaborately and meticulously selected complement of designer clothing and abundant accessories, or a businessman’s tailored suit that he wears with his half-kept secret in a clip on tie, rests a basic human skeleton. It’s what we all are – a common ground that each human shares despite our most fervent efforts to differentiate ourselves from one another.
Why then, does someone that reminds us of what we have in common, scare us, causing mothers to pull their children away and forcing discomfort to overwhelm our sense of politeness, compelling strangers to retract an extended handshake?
Sometimes I wonder if I’m the villain because I mostly don’t care if I am. That sounds like something a villain would say, holding a certain apathy to the good or bad they cause in the lives of others. Since I can’t help what I am, or that I look the way I do, should I care at all?
How, then, am I a villain?
Much less often, but on occasion, I wonder if I’m actually the hero. It’s a bit vain to think about this possibility, but every so often, I do allow myself the indulgence, if only for a moment or two. I have challenges that many others don’t and I overcome them. Whether or not it’s a welcome concept, I do remind them we are all skeletons, all of us the same thing, deep down.
People ask me what the most difficult thing about being the Skeleton Man is, and that answer is simple. I know what I am, what I look like, but the hardest thing is getting people to see me otherwise. As something else. Anything but. I’d like to be the Intelligent Man. The Quirky yet Friendly Man. The Surprisingly Normal Man.
But my aspiration is to be perceived as something else is, perhaps, in error. My want to deny what I actually am is the problem in and of itself. I am the Skeleton Man and, at the end of the day, we all are the skeleton men and women. The skeleton children. The same thing. If I’m the villain, wouldn’t it follow that you are too? And if I’m not, maybe I’m the hero of my story too.
I wonder if the Skeleton Man is a hero’s name after all. I wonder if, tomorrow, I should go show why I’m not any different than anyone. Why I’m good. Why this skeleton is so alive.
I wonder if they’d see me differently.
I wonder if they could.
Brian Rivera works at a research technology company as a Software Engineer. He has a passion for digital strategy and development. He also writes about living with disability in The Others: Being Disabled and Going Crazy.