I’ve Avoided Dying for Several Decades

5 min readMay 30, 2022

I actually wrote this on Sunday. Writers don’t get holidays. Not really. 🙂

The demands of the internet would seem to keep us all in a perpetual state of wondering what will remain fresh, relevant, true, and worthy of note. So, I’m writing this with the hope that it’ll matter in some way to someone.

You see, I have dystonia. This isn’t a contagious condition that can be easily fixed or prevented by the relatively simple act of getting vaccinated and/or wearing a freaking mask. It’s a chronic condition that (in my case) was brought on by a stroke. Even though I had absolutely no risk factors for stroke whatsoever. Even though I exercised, maintained a proper weight, ate a proper diet, etc., etc.

Way back in November 2004, I had a stroke in the rest room of a Barnes & Noble. Thank goodness I wasn’t alone at home. I was able to get help and, well, here I am. I’m a survivor. But not unscathed. Five months or so after the stroke, I began to feel the fingers of my left hand clenching, involuntarily. Then, the toes of my left feet started doing it. And it hasn’t stopped since then.

Do you have any idea how tiring it is to have a body part in constant motion? I should mention here that what dystonia does to me, in particular, is contract the muscles that control my fingers in such a way that the muscles that oppose each other end up competing with each other. In other words, you have muscles that contract your finger a certain way and muscles that let you extend it the opposite way. You know, flexion and extension. Well, in my case, flexion and extension happen all the time, at the same time. That’s not how it’s supposed to work. And the result is a mess.

You know, I’m a little embarrassed to admit that after 48 years of not dying that I didn’t really expect any of this to happen.

I guess I was in denial, huh?

So when the pandemic hit, I have to be honest. The only thing that really changed for me was that I suddenly had a shitload more Zoom meetings. Because this condition is so tiring, I really have to pick and choose my events. As a result, I ended up not going to a lot places I might have willingly driven miles to be at back when I was fully healthy.

Also, in 2012 or so, I became depressed enough to take anti-depressants. And I stopped driving. And it was all I could do some days to get out of bed. Let alone write anything.

Getting to the point where I can write these things down in a way that people will understand has taken at least ten years. Also, getting off drugs and onto alternatives like acupuncture and legal substances (no, I don’t get stoned — I just don’t want even more spam) and actually trying to drive and even riding an electric trike has taken time. A lot of time and a kind of philosophical attitude shift.

Not there aren’t treatments for this. I get Botox injections that are supposed to help, but (in reality) provide mixed results at best. And I can only get the treatments every three months. Right at the moment, I’m nearing the end of a treatment cycle. So I can barely move my dystonia-twisted hand. Because, after a while, all the different forces have that affect. It’s like my hand is filled with rubber bands, binding all my hand joints the wrong way, pulling them every which-way. I guess.

These days, I don’t usually blog about this, because I suspect people have no idea what to say in response. Unfortunately, if I don’t explain this, the story may never be heard. So, I pretty much had to write this. At least, it felt like I had to.

One of the worst things about my condition: knowing there are people out there who actually have it worse than me. It makes you feel bad about feeling bad for yourself. Add that to the post-stroke survivor guilt I felt when I was able to walk around the ICU.

Trust me. It’s a bitch.

And one other thing. My condition isn’t immediately obvious to people. I can walk and seem mostly normal. I can even manage a certain amount of small talk. But don’t make it too long or too small, okay? Maybe you haven’t noticed the way my left foot is turning in and my left hand looks spastic. But I’m feeling it, okay?

At this point, I will make an Irish exit. Otherwise, I might die before finishing this.

PS: This essay was written entirely by me. With the half-crappy fingers of both hands.

No AI was involved.

PPS: Please tell me you laughed at least once while reading this. Please. (It’s making me laugh as I reread and revise the thing. No doubt, errors will slip through. Oh, well.) Really. It’s almost as funny as the time I called an editor at a magazine I wrote for as a freelancer and asked for an extension on my column, because I’d had a stroke. I don’t think she was expecting that, either.)

PPPS: Have I mentioned the many ways I’ve almost died! 🙂

PPPPS: Happy Memorial Day, my fellow Americans! 🙂

There’s no reason for the song. I was just feeling it.

Damn, I nearly forgot to include this. Should I laugh or cry?

This post was inspired by something I read today (Sunday, that is).

So, here are the Funnies!

It’s tough to be a pencil person in a digital world, eh, Stephan?

It’s a print thing, ain’t it, Scott?

BONUS LINK: Looks like my timing is better than I thought! 🙂