Sep. 14, 2016

"Spoonie Monologue"

I am not a hero… I’m not. I don’t even play one on TV.

So why do people tell me that I’m theirs?

It doesn’t make any sense.

Why do people tell me that I’m a warrior?

I don’t feel like a warrior and I certainly don’t feel like a hero. I mean, what’s a hero? A person who saves lives and has some sort of superpower. What’s a warrior? A person who fights the good fight and wins that fight.

I’m neither.

I don’t have any superpowers, I don’t save lives and I’m definitely not winning the fight that I’m fighting. So why am I an inspiration?

I suffer on a daily basis, I’m in constant pain and I DO NOT HAVE ANY SUPERPOWERS!

If anything I have the power to be tired all the time, and I can make my hair fall out with one wash. In clumps. For no reason.

I am not a warrior. I don’t fight the good fight. I fight a dirty fight. I fight a fight that doesn’t seem to want to end. An aggressive, nonsensical and boring fight that people seem to think is either in my head or that I’m milking it for all it’s worth.

So why am I considered an inspiration?

Why do you think that my life is worth being inspired over?

Is it because I cry sometimes because there is no cure for what I have?

Is it because I can’t stand for too long otherwise I might get a fever?

Is it because I sit at home most days and wonder why the Universe decided I was a good person to crap on?

I think it’s because my life is worse than yours.

I think you think that if I can still smile with what I’m going through, you can smile through what you’re going through.

I think I’m also the worst case scenario. I’m that person that everyone goes, “Well, at least I’m not them.” And that makes them feel better about what life has thrown their way.

Am I okay with that?

Sure.

Why am I okay with it?

Because I know that if I help one person understand what I have, that we become one step closer to finding a cure.

I also know that everyone needs that one person in their life whose existence is worse than theirs. And I may not be glad it’s me, but I am glad that I’m strong enough to deal with it. I’m glad that through me, people are more aware of what others suffer.

I’m glad… but I am not a hero. 

 

(Monologue By: Laura Del)

(A "Spoonie" is a term coined my Christine Miserandino in her article The Spoon Theory. It's just a term for a chronically ill person.)