Today is the Day I Wake Up

Friday, January 11, 2019


Yesterday was my follow-up appointment with my neurologist following the 24-hour sleep study I did last month. I'd been so worried about it - worried I didn't "pass," that my brain waves, or whatever it is that they study, wouldn't show what I have been struggling with for so long. I worried that nothing would change. I worried that I'd leave just the same as I'd entered.

"It's very clear-cut to me, based on these results," my neurologist told me. "I have no doubt about it. You have what we call idiopathic hypersomnia."

I have what he thought I had, but now it's official - now my brain waves say so, on paper, for sure.

Idiopathic hypersomnia is a rare neurological disorder, a cousin of narcolepsy but 10 times less common. I didn't even know narcolepsy was common. IH is characterized by "excessive daytime sleepiness," some kind of problem with the brain's ability - my brain's ability - to differentiate between sleep & wakefulness.

I cried when my doctor told me. Like, right then, as he was talking, I felt my face twist into that pre-crying face, where you know it's about to happen, & then there you are, full-on weeping in front of strangers - medically inclined strangers, yes, but strangers, no less. He gave me tissues; he reassured me that I'm not the first person to cry in his office for relief of a diagnosis. I kept crying.

I've basically been crying ever since.

I cried during last night's Harness Cycle ride; "Your excuses are all in your head," our instructor told us, except sometimes they aren't, & your doctor proves it for you.

I cried while I read article after article about hypersomnia, everything I could find, from Wikipedia & the Mayo Clinic & WebMD & sleep clinics in places like Alaska & Australia.

I cried when I read this corny, hashtag-driven phrase used by the Hypersomnia Foundation (which is, yes, a real thing) - "Let's get #beyondsleepy" - because I have, frankly, never been able to get beyond this sleepiness that never fucking goes away.

And I cried when I picked up my new medicine, when I held one of the pills in my hand & thought about everything it could change for me, everything it could do for me. I'm scared as hell to start on a new medication, sure, because bodies are scary & mine seems half-broken all the time, but I'm really hoping that this one works, that this is the one that saves me.

So today I start my medicine.

Today I start the rest of my goddamn life.

Today I wake up. 

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