On April 1st, 2014 I was officially diagnosed with ALS.
Unfunniest. April Fools. Ever.
The diagnosis in a nutshell, as I quoted back to my neurologist, was “definitely a motor neuron disease, and probably ALS.” 90% probable. I have some weirdness in my presentation of the disease, but I’ll talk about that later. Basically I’m really young to have it – I was 37 when I first noticed symptoms. It’s also progressing very, very slowly.
FOR WHICH I AM GRATEFUL, UNIVERSE, THIS IS NOT A CALL TO CHANGE THAT.
It’s really harsh, to say the least, to be told 10 days before your 39th birthday that you have a terminal disease. Which you can do precisely jack shit about, except watch yourself deteriorate into infantile helplessness with a perfectly intact mind, and prepare to die. Whee? So my mind is in a million places, and I realize that it would probably be good to start documenting things. If only to get them out of my head and to have some record of my disease’s progression.
What I want this site to be is a safe place for me to vent. A diary of disasters. Details that might have been missed if I didn’t have some place to put them. A place to tell future me that it didn’t always suck. An easy way for friends and family to check in on me.
It would be nice if this also becomes a place for people to find out about this shit. Maybe someone newly diagnosed who just wants to see what they can expect. Maybe some encouragement. Someone close to someone newly diagnosed who wants a glimpse into that world. Someone out there who’s got something kinda weird happening and is looking around on the web for someone whose symptoms match.
What it WON’T be is a medical diagnosis. It won’t be an authority. I can’t even pretend to tell you I’m representative of anyone else going through ALS; I’m a pretty odd duck to begin with, and my presentation is a little atypical, like I said; I’d be surprised if someone out there is exactly this way. But maybe you’ll find pieces that are accurate for some people, some of the time. It won’t be me telling you what it is like for people who have ALS – it’s me telling you what it is like for ME to have ALS.
SPOILER ALERT : IT IS PRETTY SHITTY.
I’m a pretty goddamned optimistic person, and I’ll find ways to irritate you with that, I’m sure. I have always believed to my core that everything’s going to be okay, somehow, and while I’m kiiiiiinda finding flaws in that, right about now, I’m still certain that I’m going to BE okay. Even if my “okay” is not what “okay” meant to me a year ago. I have a pretty dark sense of humor about all of this, because fuck it, if I didn’t I’d go crazy I think. So while there will be the occasional OH MY GOD WHY ME THIS IS TERRIBLE there’s probably not going to be a lot of that. There will be swearing though. Lots of swearing. Even in the happy bits. Especially the happy bits.
Wow. I’m rambling. This was supposed to be a short and sweet intro.
The moral of the story is Hi, I have ALS, you’re welcome to read about me trying to figure this shit out, but I’m doing this for me, you’re just along for the ride. Buckle up, fuckers.
The moral of the story is ALS: Fuck This Shit.