If you missed my reading this is what I wrote an hour before my reading
If you ask someone what narcolepsy is, they’ll likely say it’s when you black out involuntarily, maybe because they’ve seen River Phoenix pass out in Keanu Reeves’ lap, mid-trick-turning, in My Own Private Idaho. If you ask someone what narcolepsy is and they just blink at you, they’ve clearly never seen My Own Private Idaho, and it’s your duty to tell them that’s embarrassing, and they should probably go to Metrograph soon.
Whatever their response is, they’re wrong. Well, sort of. Narcolepsy is a relatively new diagnosis. Before it was “narcolepsy,” it was called “sleeping sickness,” a broad term used to describe persistent exhaustion, and many other macabre side effects I’ll get into in a few minutes. A French dude coined the word “narcolepsy” in 1880, combining the Greek words “narke,” meaning “numbness,” and “lepsis” meaning “attack.” Attack of numbness is pretty on point for narcolepsy, considering most people believe it’s just a super inconvenient, on the spot nap.
It took me 25 years to receive the diagnosis, but it came as no surprise. When a doctor told me I was, without a doubt, a narcoleptic, I was, for one, relieved and stoked to finally have a workable excuse for my chronic lateness and inability to get out of bed in the morning. But the diagnosis was a long time coming. It’s not like I hadn’t been sitting in doctors’ offices from New York City to Silicon Valley for years, pleading for answers.
Did you know there are no support groups for kidnap survivors? I researched it once, desperate to find anything. I guess survivors of kidnappings seek isolation more than comfort from other people, I’d know because I am one. Isolation is a symptom of PTSD. So is narcolepsy.
My neurologist believes the kidnapping is the root of my “sleeping sickness.” It’s undoubtedly the cause of several other things. Where did the nerve damage on the left side of my face come from? Or my back? I’ve been asked by four medical professionals if I was in a bad car accident when I was a child. I wasn’t, but I have no idea what happened to me in Iran, no answers to the fill-in-the-blanks doctors ask you to provide them on waiting room forms. It’s almost like I didn’t exist for a while. I guess this is because I technically stopped existing. The FBI sat my mother down in September 1990 and told her we were dead.
We weren’t — my brother and I were returned that year on Thanksgiving Day, two months after we’d non-officially “died.”
Ironically, though I’m alive, sleep has been trying to kill me ever since.
It started with night terrors. People misuse this word a lot, substituting it with nightmares. Night terrors aren’t nightmares. Night terrors are when you wake up, eyes wide open, and just start primal screaming your goddamn lungs out. Except you’re awake… but you’re not. You just look awake, except no one can wake you up or snap you out of it. You just scream and cry until, suddenly, randomly, you stop. I screamed from 4 to 12.
What came next was worse. Worse than having to visit my kidnapper in police custody. Worse than police escorting me to and from school. Worse than my mom sleeping in bed with my brother, myself, and a .38 Special. Worse than screaming for six straight years!
There are two types of narcolepsy — Type 1 and Type 2. Type 1 comes with the cataplexy. I have type 1. Cataplexy is muscle weakness — paralysis, at its worst. At 12, I wasn’t ready for the horror of sleep paralysis.
There are different kinds of sleep paralysis too. Most people have the kind where they’re just, well, temporarily paralyzed for a few minutes as they fall asleep. This kind usually only happens a few times in one’s lifetime, when they’re extremely stressed. The other kind of sleep paralysis is hallucinatory and plays with your senses. By plays with I mean fucks. You hear people talking, often whispering to or about you; you feel people touching you — you can even feel pain! — you smell things, like sulfur, you taste blood in your mouth. Oh, yeah, and you’re paralyzed. Oh yeah x2, this happened nearly every night for four years.
Science explains this as some fucked up shit that happens to your mind and body while you’re between dreams and reality. At 12, I wasn’t buying it. This was some exorcist shit. I would feel my bed start shaking, will myself out of the paralysis (it helps if you wiggle your toes), and sprint to my parent’s bedroom. I didn’t give a fuck what time of night it was, I as clearly possessed by demons. Either that or aliens were abducting me at night (also totally plausible to 12-year-old me). Or I was just haunted! Whatever it was, I was super popular in middle school for the first time in my life, and this wasn’t chill at all.
This was around the time when my first character showed up. Having “characters” is normal in sleep paralysis, they haunt you like ghosts. I only know one of their names. I don’t know this man’s name, but he’s in his mid-30s, kind of looks like Father John Misty, and is extremely greasy and aggressive. He’d pin me down in my paralysis and insist on having his way with me, “when I was older.” What do you even do when this is happening to you, and you’re 13-years-old? I just tried to nod, and shake myself from the paralysis. He still visits, but not as often. I don’t think I’m as vulnerable as I was at 13. He doesn’t scare me as much anymore.
My other characters are a frigid blonde woman and Eric Harris. The school shooter, Eric Harris. Columbine Eric Harris. A school shooter is literally a character in my sleep paralysis Treehouse of Horror. He’s the latest edition to the crew. All of my characters are extremely different — The blonde woman critiques my decisions and appearance. She looks like Ivanka Trump. Eric Harris is a little shit; he tells me he’ll have his way with me, he calls me a whore. If I weren’t so paralyzed while this is all happening, I’d tell him I know he died a virgin because I’ve read his LiveJournal entries in web archives multiple times. Father John Misty always broods in the back; he doesn’t talk much, he’s just there. They talk amongst one another — Eric Harris, Ivanka Trump, and Father John Misty. Josh Tillman tells Eric to shut the fuck up sometimes. I don’t know if this part is normal, but I think the character manifestations have a lot to do with what I fear most.
Apparently, most people with sleep paralysis just see the archetypal “shadow person,” but I’d be bored without my three horrible sleepy-time companions.
A huge question of mine has always been — if this isn’t some sort of fucked up demon possession, if I’m not being terrorized by Eric Harris’ demonic spirt in the middle of the night 12 times a year — why doesn’t anything good happen during sleep paralysis? Why can’t I trip out and see some cool shit? Why can’t Harry Styles be one of my characters? Why is all of this so fucking awful?
I’ll be dealing with narcolepsy for the rest of my life. So what helps? Muscle relaxers, listening to music as you fall asleep, and actually, small quantities of GHB. Like, the roofie, GHB. I literally have to fucking roofie myself to deal with this.