“My name is irrelevant. I’m 14 and unlikely to celebrate being 20. I have a muscle disease that will eventually affect my heart and kill me. My life hasn’t been miserable. I wasn’t always like this. They say there were years when I ran and felt the wind against my face, but these aren’t years I can remember.
My life has been mostly spent at hospitals and clinics. My first memories are of my mother frantically taking me to doctors. They always spoke in a tone that implied I was being praised saying how I’m a “classic presentation” but my mother never seemed to take pride in that. During every checkup they’d make me sit on the ground and try to get up in front of a new group of medical students who could only add to my life by clapping. Clapping that was canceled out by looks of pity louder than thunder.
Relatives always seem fascinated and relieved. They look at me then to their children and silently thank a God they still have a reason to believe in. That’s okay though, I don’t envy the other children or blame their parents for being thankful. The thing that gets me the most is how they’re asking my mom to do more. Telling her maybe there’s something she could do. Like she doesn’t already blame herself enough.
I googled my disease and I know I got it via a chromosome from my mother. A chromosome she couldn’t have known she had. I’m certain this has been mentioned to her on multiple occasions, it’s not like we’re strangers to hospitals by this point. She quit her job to take care of me. To take care of a son who’s going to die in a few years. I ask myself ‘what’s the point?’ Would I do the same for someone else? Why keep me alive and struggle this much if I’m just temporary?
I can’t get up on my own anymore let alone walk. I can barely feed myself. School is just a concept that becomes a reality a couple of times a year. I’m glad I’m getting an education, it’s something I can do on my own. I can read a book without being observed by the public as my mother grunts and gasps as she helps me get around. The last time I tried moving across a room on my own I hit the ground hard and the terror in her eyes was enough for me to never try it again. Seeing her struggle with me will always beat the mania followed by sudden relief when she realizes I hit the floor because I can’t support myself not because my heart finally stopped.
It’s unlikely that I’ll figure out why she’s doing this when she knows it won’t last in the few years I have left. I hope it’s not out of guilt or obligation. It’s hard to believe in anything anymore but the idea that she does it out of love helps me go on with my day while the thought of how she’ll feel when I’m gone keeps me awake at night.”