Finding the Energy When It Feels Like You’ve Got None Left

I thought I’d be spending most of my days waiting around for the printer to finish its job, only to load up another file and wait some more. But lately, the roles have reversed. The printer’s waiting on me. It’s funny how sneaky this disease is—ALS has a way of dragging you down into the dirt without you even realizing it. It wraps its fingers around your spine, weighs down your muscles, and suddenly you’re chalking up that heaviness to being tired, to needing more rest, to whatever excuse makes it easier to stay in bed till noon.

That’s the trick, see. It isn’t always the pain that gets you, but the quiet ways it pulls the ground out from under you. You start to think it’s normal, just another symptom, just another thing to live with. And before you know it, you’re stuck in a loop—doomscrolling on your phone, eyes glazed over, letting the minutes drain into hours.

Today was one of those days. I was ready to let it all blur by, just another stretch of time lost to the monotony. But then I looked up. And there it was—a portrait staring back at me. A soul etched in plastic, eyes wide open, that knows all about this game, that’s been through the same goddamn feelings, the same bullshit. That stare jolted me, pulled me back from wherever my mind had wandered. That face didn’t give up, and hell, I wasn’t going to either. So I got up, told myself, “Today isn’t going to be another day wasted,” and I started moving.

I wasn’t even planning on writing a blog post, but here I am. Maybe it’s that turning point I’ve been waiting for, maybe it’s just a good day in a sea of bad ones. Either way, I’m still here, still breathing, still working on this project, still ready to tell ALS to fuck off.

ALS is a sneaky bastard. It slips into your routine, makes you think this is just how things are, how they’re always going to be. But every now and then, something snaps you out of it—a portrait, a memory, a flicker of light in the fog. And it reminds you there’s still fight left, still art to be made, still moments to claim back from the grasp of this damn disease.

So, I’m going to keep going. For every soul captured in those lithophanes. For everyone who feels that same pull of depression and doesn’t even realize it. For the chance to say, in no uncertain terms, to ALS and everything it stands for—this is my life, not yours.

And it’s not over yet.