I didn’t feel the seizure coming.

I woke up already inside it—breath stolen, consciousness clipped, EMS circulating around the dining room like I’d been dropped into the aftermath of my own life.

Someone was hooking me to vitals.

Someone pricked my finger for blood sugar—“good idea with the seizure,” another affirmed.

“Yours might be better than mine,” he chuckled.

Another EMT started the orientation questions, the ones that check whether your brain is still participating:

“Do you know where you are?”

“Can you tell me your name?”

“What day is it?”

I should get double points for those—we’re not even living in our permanent residence right now.

And because the universe has a sense of humor, the whole thing briefly reminded me of that infamous 2020 moment when then President bragged about acing his cognitive test by remembering “person, woman, man, camera, TV.

Then came:

“Do you feel okay?”

“I’m starting to,” I said. “But with all you guys here, I’m guessing I wasn’t feeling okay a minute ago.

That earned the polite, rationed EMT half-laugh—the one that says you’re still human, still in the world, still sharp enough to be worth responding to.

Then I heard it:

“We better bring in Jeremy.”

“Who the hell is Jeremy?” I asked, because if you wake up surrounded by six strangers in uniform, you’re entitled to one good line. Sort of like the jail phone call. I was in seizure jail.

“I’m Jeremy,” he said, stepping forward with the calm of a man who’s been summoned to explain gravity to people mid-crisis. “I get called in for certain cases like this.”

Cases like this = hospice.

POST.

DNR.

(Plus, swear to God, medical equipment delivery guy and life-insurance planning happening at the exact same time.)

A POST form signed that morning.

The kind of paperwork that tilts the whole room.

The POST Form, Without Bullshit

My POST form sat on the table—hours old, barely dry, about as ceremonial as any document with checkboxes can be.

People like to romanticize these forms.

There’s nothing romantic about them.

They’re boxes.

Literal boxes you tick with a pen. And in so doing get your future self into something.

Here’s the truth:

The checkboxes aren’t the elegance; they’re the enforcement.

The elegance is the clarity you fight for before you ever mark a box.

The meaning isn’t in the paper.

It’s in the conversations that made it possible:

the reckoning, the truth-telling, the refusal to pretend.

The form is command.

The care is everything that preceded it.

Jeremy’s Clarity

Jeremy didn’t treat the POST form like scripture.

He didn’t soften it or inflate it. He just understood the gravity of protocol when protocol belongs to a living person.

He looked at the form in the way a surgeon places a hand on your shoulder—steady, factual, sharing the burden without trying to take it from you.

“This is what this means,” he said.

Plain. Direct. Nothing melodic about it.

He wasn’t there to reinterpret my choices.

He wasn’t there to rescue me from them.

I’d already made the decision—for both of us.

“We can keep you from biting your tongue,” he continued. “Anything beyond that risks knocking you out of hospice.”

I nodded—or tried to. My body was still rebooting.

This wasn’t cruelty. It was respect delivered with the full weight of the system behind it.

The Lesson

Hospice had been an abstraction until that moment:

equipment, catheters, transportation devices, bed baths, schedules, meds.

But it transformed the second I woke up to a room full of professionals choosing not to override me.

My seizures aren’t static—they’ve moved from focal-aware to left-arm convulsions and now into episodes where I lose color and consciousness.

But even as they’ve changed, the fear that someone might “save” me by mistake is gone—not because the seizures are gentler, but because the team around me is aligned and precise.

Hospice isn’t the absence of medicine.

It’s the presence of consent.

It’s the medical system doing something radical: Listening. And in that moment—half-conscious, sarcastic, grateful—I realized something I didn’t expect: I’m not just dying the way I choose. I’m being allowed to live the ending I chose.

And let’s be honest:

It’s scary to sit in front of an AED—aware that the shock-’em machine is right there.

And it’s also scary to have signed the paperwork that keeps that thing idle.

I’m not recommending anyone choose what I chose.

I’m not judging anyone who wouldn’t.

But making choices like these—naming them clearly, owning them fully—is a gift to human dignity.

Big shout-out to Whitney, to Jeanie, and to Jeremy—my interdisciplinary guardians of the line in the sand.

That’s the lesson of the seizure.

This blog post was published by Glioblastology on November 29, 2024. It is republished with permission.