And Signed Me Up for Humility School at No Extra Charge

My wife and I are sitting in the treatment room. The doctor, the latest of at least a solid dozen we’ve been referred to along the way, is going over all the labs and things we’ve tried and doctor’s notes we’ve been collecting over the past couple of years on this journey.

He wants to run a few more tests to be sure, but he finally gives a 7-syllable name to this thing we’ve been chasing without success since it knocked me all the way to the ER a few times, convinced my head was in the process of exploding.

“Dermatomyositis,” he said. DM for short.

It’s one of those long, twisty words that sounds like it might involve Dr. Suess or a small town in Wales, but no—it’s a real condition, and it mainly involves your skin and your muscles, which, let’s be honest, have never been my strong suits to begin with anyway.

It’s like a smorgasbord of symptoms, only this is the twisted kind of buffet line where you don’t get to pick the items you want, the items get to pick you.

Now, imagine your body as a small-town post office—everyone’s got a job, there’s a rhythm to it, and most days things run just fine. But one day, the guy who sorts the mail—let’s call him “the immune system”—starts putting envelopes in the wrong slots. On purpose! He’s convinced that those poor, innocent muscles and skin cells are up to no good. So he starts attacking them. Not maliciously, mind you, just… misguidedly, like that neighbor who always waves and calls you Earl, even though it’s Eugene, and you just don’t have the drive to try to correct it anymore.

It’s like a smorgasbord of symptoms, only this is the twisted kind of buffet line where you don’t get to pick the items you want, the items get to pick you. If you’re lucky, at some point one of them grows bored of you and takes four weeks of PTO in the Bahamas before returning for seconds, all rested and well-tanned. They call it a flare-up. But not to worry–the other symptoms will usually pick up the slack whenever one taps out.

That’s dermatomyositis. It’s your immune system getting a little too feisty and turning against you. No two cases are alike, but for me, the muscles, especially around my shoulders and neck, feel weak for no good reason (other than holding up this giant head). Leg muscles aren’t spared either. Climbing stairs is only undertaken if there’s a St. Bernard toting Diet Coke (and ideally equipped with a saddle, please) patrolling the stairs behind me. And if I see the sun (and sometimes when I don’t) or when my symptoms are playing extra rough, my skin might get taken over by rosy little splotches on my nose or my whole face. But the nose is usually the first to go red on me (if you have a hankering while you’re speaking to me to sing Rudolph, no worries, I sing it in my head every time I see it in the mirror; maybe we could work out harmonies). There’s a bunch of other available symptoms to throw at you, but you get the idea.

The worst part for me is the round the clock head pain that usually charts somewhere in the neighborhood of a 3 to a 7 on a scale of 10, with the occasional foray into the 8-10 neighborhood where I lose English as my primary language and have no secondary language to fall back on. The pain often spills over into brain fog, which makes complex things like rewriting scripts a slog, as half the time is spent rewinding life to the last known save point to figure out why my character is standing in the garage with a wire whisk in one hand, a lamp in the other, and a Disney cast member badge that says Earl.

But I’ll tell you this: getting diagnosed with something like this, it changes how you see things.

DM mostly shows up in middle age or childhood and it’s more common in women, so look at me being a trailblazer for men in life’s Act III. Woot.

The bad news: no cure. The good news is, there are treatments for the various symptoms that help to varying degrees. It’s not a walk in the park, but with the right care, folks can still live meaningful lives (although on bad days I may be tempted to quibble about that meaningful bit).

That said, I’ll tell you this: getting saddled with something like this, it changes how you see things. Life gets pared down, like trimming back a tree to rediscover the sun (that I can’t be out in).

Funny thing about getting a diagnosis like this—it doesn’t just mess with your muscles, it messes with your timing. Suddenly, all those “someday” projects start asking if maybe today might work instead. I’ve found myself taking a second look at the creative scraps I’d tucked away for later, trying to sort out which ones still spark something and which ones were probably just stalling tactics in disguise. It’s not about urgency, exactly—it’s more like clarity. A quiet little nudge to spend what energy I’ve got on the things that still mean something to me.

It’s also taught me to admire the everyday heroes—the ones who walk a little slower now, but still show up even when their body is trying to vote them off the island. The ones who’ve had their own odd diagnoses and detours, and yet keep pressing forward, even if it means needing a breather or two along the way. I see them now. I feel them. Most people, I find, are dealing with something that fills their plates. Maybe I can muster up a little more kindness, a little more grace for them, and maybe even a little for myself when I sometimes let my symptoms make me frustrated. We’re all out here together, taking life’s punches the best we can, and sometimes just showing up is its own kind of victory.

So I’ll keep trying to show up, too. A little slower, maybe, and sometimes one button off on my shirt (true story)—but still here. Still in the ring. And if I forget your name and call you Earl, just know it’s meant with love.