There always existed a bit of controversy surrounding the fact that I didn’t want to be an inspiration. I was even quoted in the Toronto Star for saying this a few years back. I, however, never understood what the fuss was about.
Unfortunately, the “I” word is one of the biggest clichés. Almost anyone with a physical defect, even a misplaced freckle, is considered such because they faced something out of their control. It’s a contradictory term that invites more sympathy than respect, while focus drifts from the particular person. Perhaps in a better world, but who am I to claim this title?
It was only Tuesday afternoon that I suddenly lost all vision. No matter how much my eyes were open, everything remained black. I’ve had bouts with low blood pressure, but not where I fell unconscious for several hours. My lips turned white and face, devoid of colour, while my entire body went cold. All of us thought it was the end of me.
Mom used to say she wasn’t afraid because she knew we’d meet in heaven. Yet when push came to shove, she bawled her eyes praying, professing how much she didn’t want to miss me. I cried, thanking her and Dad for giving me the best life a son could ask for.
Death doesn’t knock on your door. It just grabs you without warning, without mercy. So many look up to me for being one of the oldest living individuals diagnosed with Duchenne muscular dystrophy, but eventually, I will disappoint and fade from their memories.
Truly, there is nothing in the world that gives me the right to glorify myself. I am no better than anyone else because of a mere affliction. Consider the humble nature of parents who sacrifice themselves to care for their children: I look to mine and wonder why I should take credit when they’ve given their lives for my sake.
No. I am definitely not an inspiration. Before my colostomy/feeding tube operation in early November, I had a terrible nightmare that gave great realization. It isn’t their fault, but sometimes, I can’t help but get frustrated over the fact that I’m the first and only person in my bloodline to have this disease. Why must I suffer when they’re having the time of their lives with their functional body parts? It irritates me, being alone in this shit.
I was never an angry person. I’ve suppressed the hidden and harnessed it as energy to deal with this hand in life. Over time, my anger transformed into unrelenting rage. I fear myself when at this phase with an inability to save myself like before, the aforementioned has no stable outlet. I’m having an impossible time controlling my emotions.
For a couple weeks in the ICU, I had forgotten the extreme pain with the narcotics in my system. I’m being crushed from all sides with unbearable physical agony. I can hardly take it anymore, it’s so heavy.
And I realized that my romantic writings are nothing more than a way to keep myself calm amid the perpetual loneliness. I need some imaginary girl in my mind because no one is there to hold me when I wake up screaming in silence. I dreamed about throwing myself down a flight of stairs and didn’t die. I feel so… trapped.
You never win in life. I’m tired of fighting with no rewards on the horizon. I don’t want to be strong enough. I want to be free, for once.
We all have our own set of obstacles and challenges, whether physical, emotional, mental, or spiritual. None of us are above and beyond, and because of this, it’s more than important to stick together. I can’t emphasize it enough because in this fight, there’s no room to be selfish.
As a person, I can become broken, lost, and corrupted. What I can do, though, is encourage others to find heroes and heroines in themselves. People deserve someone who will motivate them to exploit their own abilities, regardless of limitations.