I will most likely be dead before I turn 30. Even that estimate is a generous one. I have a disease called Spinal Muscular Atrophy (Type 2) that has been slowly destroying all the muscles in my body for the last 18 years, 11 months, and 354 days. Eventually I will catch a cold, it will turn into pneumonia, and my body won’t be able to fight it off, at least that’s what all my doctors subliminally imply every time they tell me I’m lucky to have stayed out of the hospital for almost a year now. Look at that, you already know my deepest fear, the one that hits me like a train every single night when I’m trying to fall asleep; I don’t know how much longer I have to live. We’re practically dating.
To be honest, I’m not as upset about my circumstances as I maybe should be. Not that being sad all the time would be the best way for me to live my life either, but I’m genuinely happy 99.9% of the time, which gives me a slightly distorted view of reality that causes me to forget the fact that I am in a wheelchair and need to do mostly everything a little bit differently than everyone else. For instance, I love sleeping, it’s one of my favorite things, but about a year ago my stupid doctors ordered that I start using a bi-pap to help me breathe while I sleep. My basic response after trying the machine for one night was “fuck that, I’d rather die in my sleep than have to wear that every night” and I haven’t used it since. I’m probably being ignorant.
And yet, I don’t want to die, not today, not tomorrow, not ever. I love being alive. Besides doing some things differently, I pretty much live a normal life. I have a great family and the coolest friends in the world, I go out and do things, like drink, (I only weigh 50 lbs so drinking gets interesting, but more on that at another time) go to concerts, hangout, pretty much anything a normal almost-19-year-old does. I just finished my first year of college; I am study journalism and psychology at a local liberal arts college.
Living life from the seat of my powered wheelchair has allowed me to develop a pretty unique perspective on life, one that I hope to share with all of you!
I hope at the very least that someone out there enjoys what I have to say. I can promise you this much; it will be real, it will be blunt, it will be sad, it will be funny, and it will be an adventure!