You ever wake up after three hours of broken sleep and try to function like a normal human being? That fog, that stiffness in your joints, that feeling like your brain is booting up on a 20-year-old computer? That’s my baseline—on a good day.
I have fatal familial insomnia. It’s exactly what it sounds like: fatal, inherited, and insomniac. There’s no treatment. There’s no sleep. And eventually, there’s no me.
I was 22 when sleep started slipping away from me. Not all at once. At first, I just assumed I was stressed. Long nights, too much caffeine, screen time before bed—whatever excuse people throw around these days. But it didn’t get better. In fact, it got worse. Within months, sleep became something I couldn’t do, not even badly. I’d lie down and… nothing. No drifting. No dreaming. Just watching the ceiling until morning, like my body forgot how to shut off.
Now? I don’t even try. There’s no point. It’s been years.
People ask what it feels like. Honestly? It’s like being permanently stuck in the hour after you wake up—groggy, slightly nauseated, irritable, unsteady. But you never come out of it. There’s no moment of clarity, no surge of energy, no reset. Just existing in the liminal sludge of wakefulness.
Eventually, the brain starts breaking down. First, it was little things: misplacing keys, forgetting what day it was. Then came the hallucinations. I’ve seen spiders the size of horses crawling across my walls. Heard ovens exploding when nothing was cooking. Spent hours chasing phantom sounds through an empty house. Once, I hallucinated a full conversation with a friend who wasn’t even there.
It’s not just visuals. Sometimes it’s sounds. Screams. Static. Whole symphonies that my brain composes and plays without my permission. You get used to it—not in the sense that it stops bothering you, but in the sense that you stop reacting. It’s like watching your own mind glitch in real time.
Medication? Doesn’t work. Tranquilizers, sleeping pills, even alcohol—especially alcohol—just make things worse. I tried blacking out with vodka once and stayed wide awake, drunk and fully conscious, for nearly two days straight. Nothing touches the core issue. Because this isn’t about brain chemistry—it’s about physical degeneration. Holes in the thalamus. Like unplugging the sleep switch altogether.
The hardest part isn’t even the tiredness anymore. It’s the realization that this is it. That this disease is terminal and incurable. That no matter how well I cope today, I’m heading toward a point where I won’t be able to remember who I am.
I’m medically retired now. Used to work nights just to feel productive. Now it’s video games and reruns. Cartoons help. There’s a weird comfort in bright colors and predictable story arcs. Doctor Who has been my loyal companion on this slow-motion decline.
Death doesn’t scare me much anymore. It used to. But now? I think I’ve made peace with it. I like to imagine it’ll be like sleep—real sleep. That final, deep exhale I’ve been chasing all these years. A long, quiet fade into black. No dreams. Just rest.
I’ve already signed the papers to donate my brain to science. If someone can crack this disease by poking around my broken circuits, then it’s worth it.
Regrets? I’ve got a few. I wish I’d found my father, whoever he is. My mom had this too—hid it from me until it was too late. I don’t hate her for it. But I wish I’d known before I built dreams. Before I made plans. It feels a bit cruel to let someone imagine a future when you know damn well theirs is on a timer.
What keeps me going? Honestly, my friends. One of them stayed up with me the whole night once, just talking, just being there. That meant everything. Little things do.
And that’s maybe the only thing I’d pass on to you. The advice I’ve learned from watching life slip through my fingers: Be kind. Give your time. Make your presence a gift.
You don’t know how much someone else might need it.