I used to say that I’d rather be dead than to lose my eating abilities. I’ve lasted for such a long time, more than most with DMD. However, nowadays, I’m having much difficulty swallowing Jell-O, the supposed “assistant” for getting rid of food jams. Cooking shows (one of my favourite pastimes) make me cry because I’ve lost my passion for both lunch and dinner. It’s sad when I had been watching them since I was three years old. Mom even got me a toy kitchen set that was motorized and made sounds.
How did this happen? Life never stopped being a trial, don’t get me wrong, but I never expected things to become so… bad, and all resulting from a combination of a few minor issues. I often stay up through the night because something is stuck in my throat and sleeping would be too dangerous. Exhaustion is seemingly the consequence of not giving up.
A feeding tube is in the works, though I’m still contemplating the idea. There are times when I don’t feel human anymore, all these artificial extremities, stabbing into my flesh. I wonder if I should just let go of the endless suffering that afflicts me on a daily basis. I wonder when I’ll finally reach my limit because I always feel this close to ending everything.
Why do I bother? No legs, no arms, unable to breathe without a machine, nearly at the point of liquid sustenance, extreme pain, numbness, heart failure, and loneliness in the romance department since forever. It’s a miracle that I haven’t gone insane already.
People keep calling me brave, an inspiration. I never asked for this. I see all the freaks and geeks at the healthcare centre, thinking I don’t want to be like them, but then you suddenly realize, you are one of them. The cold, hard truth is that crying solves absolutely nothing.
And you want to know what happens when you’re fighting for your survival? Parents start asking you to send messages to their dead children in heaven. I’m over that shit. It doesn’t matter what others say or do because at the end of the day, it’s nothing more than a façade. Reality tainted the fairytale within my lonely mind a long time ago.
I haven’t faced it all like Frankie says, but looking to the darkness, I know what death means. Of course, the emotions included aren’t a subject that most will voluntarily divulge, but this isn’t your average person writing. I used to think ending my life would be so easy and quick, but never realized it came with so many struggles. I even made a slide show of my life to serve as a reminder that my journey had not ended.
For my entire existence, I fought without hesitation. I kept going, unafraid and mostly unaffected. Only, with the notions of death looming over, the different ball game becomes a whole other monster. I lived with fearlessness, but suffocation makes me scared. I never thought the world owed me anything, but going through old pictures of my family, I started crying because I resented my loved ones for having such long, beautiful, healthy lives.
Why the fuck am I the only one with Duchenne muscular dystrophy? Wine glasses and banquet dinners… happy living you smiling sons of bitches!
So many conflicts, this disease is more cerebral than anything. It’s psychological warfare. I get a good chuckle whenever people call someone like me a warrior or soldier. I mean if they genuinely believe the world sees us that way, they seriously need to pull their heads out of the sand.
We’re not idiots. Do we get the same respect as policemen, firemen, or the military? You don’t see pretty young ladies lining up to marry us, do you? In truth, women think we’re boys, while men ignore us because we don’t talk fast or loud enough. When the battle is internal and invisible to the rest, you’re just a hero by mouth. A barrage of conflicts is what this is, and something you can’t run away from. I never wanted to be a hero anyway. I simply want normalcy.
As my world continues falling apart, my sense of direction also drifts further and further away. Yet I remain. That has to count for something, right? Sometimes you have to fight, even when you don’t know what you’re fighting for. It’s my secret sauce!