Alright, I have a confession to make: I’m hiding something huge from you. In earlier posts I have eluded briefly to having a disability. Until about two years ago, it wasn’t really a condition on the radar. Then, Ice Bucket Challenge Summer descended upon us, which just happened to be the summer I was diagnosed formally with Amyotrophic Lateral Sclerosis.
Yes folks, it’s a shit show. I’m losing the ability to move, swallow, and breathe. Eventually, I will be trapped in a useless hulk of a meat sack body with a fully functional brain. Death will come from either respiratory failure, or malnutrition. If you want all the gory details, Google it, http://als.org is a great place to look. Steve Gleeson and the great Lou Gehrig among thousands of others live with it and died of it. Oh, and please for the love of all holy DO NOT throw Stephen Hawking at me. He’s lived 52 years with it, and he’s a freak of nature. The average lifespan is 3-5 years. There’s no cure; fuck there’s not even an FDA treatment for it.
I detest hearing otherwise well meaning people tell me how “brave” I am. Or, how I’m some kind of inspiration. Fuck that shit. Fate tossed the dice, and I lost the roll, simple as that. Don’t call me a hero, I’m just a goddamned mess dealing the best I can. ALS has caused me to be a freakishly anxious, wobbly gimpy bitch that is nigh on impossible to live with.
Thus, I will not mention it much here. It will not define me. Here, in the blogosphere, I’m Zezrie, the brightly hued wild child who has no fuck’s to give. I will discuss what I know about: art, sex, debauchery, music, experience. This is who I truly am.