Hi there. My name is Vashti. It’s pronounced VOSH-tee, and yes it is my real name. No, I’m not Indian, though the name IS Persian. It’s an obscure Biblical name. Look it up.
I was diagnosed with ALS in 2014, ten days before my 39th birthday, and I’m just trying to figure this shit out.
I’ve been feeling on and off like I should start some kind of online journal, something public, to document what this is like. I think it would be interesting to see it from minor problem to the inevitable, it might give someone out there an idea of what to expect. There’s precious little out there documenting the process, and as my progression is so slow, I think I could talk a lot better about the minutiae. And it’s the little things that add up after all, stupid shit that you’d never know you’re not alone in because no one else ever mentions it. I kinda want to do that for myself, too, to keep track of my own progress, to document the good days and the bad ones. I have a list of things already that I feel like people should know, and I still have the power of speech and typing. And since I have speech and mobility too, I’ve been thinking about vlogging a little to go with it.
And then sometimes I think why the fuck should anyone care about any of that? So maybe I’ll just do it for myself. I go back and forth almost daily about it, but I’ve kept a running Google Doc with topic ideas anyway. I don’t know. I told myself at least I wouldn’t be afraid of putting it out there publicly because of stupid trolls putting mean comments, because..what the hell are they going to be able to say? “You’re stupid and ugly and your blog sucks”?
“Well I’m also dying, so there’s that, and I’m delighted to be a punching bag for you on my way out. Your life must be such amazing shit if you feel like you have to pick on someone with a terminal disease for writing about having a terminal disease.”
“Also you are a fuckbiscuit doucheface.”