Sometimes I wonder if dignity can actually exist within all this death I call my world. It was only several days ago that I decided to stop eating so I might leave this place for good. I aspirate on everything and can’t even comprehend the notions of life without proper food. I used to tell people that I’d rather be dead, but now, I’d rather die than to feel the agonizing pain of that sharp catheter going down my lungs for the millionth time. I refuse a feeding tube because I never wanted to be one of “them”, the muscle wasted genetic freak shows, hopeless, yet sooner than later, you realize that you were always them.
As I spoke to Wilma about my way out of here, how I could go into a medically induced coma while dying of thirst, I decided to stop the neuropathic painkillers, in hopes of strengthening my swallowing capabilities. The torment has returned, even with a couple less pills, the burning of fire like a continuous pouring of alcohol on an open gash. How am I to endure when 2100mg of numbing drugs that only take away 10% will be reduced to zero?
I am weak. I am courageous. I fall. I stand. I’m brought down to my knees. I push forward. I can. I will. I’m relentless. I’m unstoppable. I am power. I am human. I am imperfect. I’m skin. I’m bone. I’m life. I’m death.
When you realize that you’d rather have cancer than this wretched disease, and how much of a blessing it is to gasp for your final breath, you also realize that you’re too young to be so old. I tire of worrying that the ones at my funeral are too damned naive to understand the difference between giving up and letting go. If I died of natural causes, then to hell with their stupidity…
How do I rise and rise again from the darkness? As I learned not to fear anything, growing up with Duchenne, I became a god in my own mind. I must unlearn all of such fantasies that have kept my sanity intact throughout the years and harness my fear of having nothing near my mouth again. I must divert it and be afraid of dying instead.
No longer can I walk, no longer do I have the use of my arms, my hands, my fingers, with the exception of one and a half… and I can’t feed myself, I can’t even have the luxury of my own breath, I can hardly use the bathroom, and I choke on everything I eat. Screw this shit, dignity is MINE to make!
I’m angry, but I cry more often. I just wish I could be a hero, for once, for real, in someone’s eyes. And I wish she would hold me in her arms until this conflicted rage subsides, this perpetual torture, the unrest. If only I had a girlfriend, so she might kiss me and take away the misery. It goes against my beliefs, but I need a reason, and someone to love me too.