that includes hallucinations, sleep attacks!, hardcore memory loss, crushing fatigue and nerve damage.
I just woke up from a two-hour lucid dream session that involved Justin Bieber and me in a swimming pool. I'm not really cool with that. So instead of risk falling back into that groggy half-asleep state
that nightly bombards me with voices and people who aren't there, I decided to do a little writing about narcolepsy.
I have had narcolepsy my whole life and it has been crazy. And I literally mean that--I'm a little crazy. I've been hallucinating since I was four. I really thought that my dolls and shit were alive. Ok maybe you did too, but I really really did. Anyway... what I'm saying is, I know narcolepsy is caused by a brain chemical imbalance, and that "mental illness" is kind of a silly word, maybe. But I think narcolespy belongs there. So I made a list of the 8 ways that narcolepsy means I might be a little crazy. or i mean you might.
#1 You Hallucinate a Lot
Most people with narcolepsy don't start hallucinating until they are in their teens or older. I'm an odd case, and can remember this happening as early as about four years old. The first hallucination I remember is of my bed spinning and flying up into the sky. This memory is just as vivid as that of my stepfather showing me how to pull the guts out of a deer when I was ten, the buck hung upside down, his tongue sticking out, and a single drop of piss crystallized on his dick.
Here are some other hallucinations that stand out from my childhood:
Long conversations with God in which he built pyramids out of my blessings that looked like flow charts.
My stuffed dog Otis, my best friend, whom my mom threw out, came back around.
A man's hairy thighs rubbing against my legs...eww!
Most of my hallucinations aren't melodramatic. They're usually more just straight affect: a TV that keeps flipping channels.
When things get bad, the shows would get creepier. So I would sleep with the lights on in my clothes. Or they can be nice, spesh if you aren't sleeping alone--teasing out intimacy.
My hallucinations are usually audio. Sometimes they are "voices in my head" audio, and other times, they are "voices in the room" audio. I don't like the latter kind very much. It makes me feel like I'm crazy. I don't even know the person usually.
Another weird hallucinogenic state that can occur is while sleeping. I sometimes wake up from a night of sleep feeling like I've just seen four or five really intense movies, maybe all playing at random times. Or like I just spent two days in Paris with Maculey Culken and Seth Green.
#2 Sleep ParalysisYour body defensively paralyzes itself while you dream so that you won't act out the stuff happening in your head. Narcoleptic people become paralyzed in their dreams like everyone else, but they do so consciously. This is referred to as sleep paralysis. I'll try to describe it.
I like lucid dreaming, where I'm conscious and in control during the dream. I've learned how to fly, had sex with cheerleaders, punched cheerleaders. They are good unless you get one where the air is really heavy or you can't move your legs or you're being forced to hang out with Ryan Seacrest. In that case, you try to wake up. And it goes like this.
I wake up. I get out of bed. I walk to the bathroom. I'm back in bed. Shit, I'm dreaming. Ok wake up. Ok, one foot down. Other foot down. I'm to the door. Goddamn it I'm back in bed again. Ok, I'll scream. I'm screaming. Wait no, no sound. And... it's weird.
#3 CataplexyMotherfucking cataplexy. This is a loss of muscle control, usually brought on by strong feelings. I trained myself from an early age not to laugh too hard. This is because I would piss myself.
Or half of my face will go numb when I'm stressed out. The numbness will trickle down into my neck and into my back. It last sometimes for a couple hours.
I've talked to a lot of doctors about this, and they all told me that I should make sure I'm eating enough, I have low blood pressure, or I might have a pinched nerve.
Here are the medications I have been put on for treatment of my narcolepsy, which has been misdiagnosed as depression, anxiety disorder, and borderline personality disorder.
#4 Sleep Attacks!"Sleep attacks" is one of my favorite phrases in the medical lexicon. It's actually the real phrase, there's no Latin equivalent, and it reminds me that narcolepsy is kind of absurd.
I have fallen asleep:
While driving, usually pulled over first, dozens of times
During at least 20 movies I was watching with other people
While having sex with someone i really want to like me
Talking to people at bars and then having to leave the bar
At my orientation meeting with my managers at my first "real" job
Through so many classes, but I did get a 4.0 that semester I was on coke.
#5 OMG So TiredI am so tired all the time. They give me Ritalin, which makes me kind of normal. I don't even know what to say. I could sleep 12 hours out of the day. I've spent days in bed.
#6 Hardcore Memory LossOne reason I was mis-diagnosed with borderline personality disorder was because of a feeling of emptiness, a vacuum where most people have their identity. My identity is not grounded, and this is because I have such serious memory loss. I don't remember what my childhood home looked like. I don't remember the halls of my high school. I don't remember the sound of my stepfather's voice.
Memory loss has been well-documented in narcoleptic people, and I don't really remember why. I don't remember facts in general. This has made for an interesting career. I love the internet a lot more than most people because I rely on information--emotional, factual, sensory--to live on the outside. I'm the living embodiment of cloud computing.
#7 OMG Eating DisorderMost people with narcolepsy are fat. This is because of appetite deregulation in your bran. I felt like I was starving throughout most of my life, and I ate, a lot. I then exercised, threw up, or developed relationships with appetite suppressants in order to curb the effect because I'm a very vain female.
I stopped binge eating after I found out that it was caused by narcolepsy, mostly. But there are actually foods I can't even have in the house, like an alcoholic (Cheez-Itaholic?), and my relationship with calories is highly dysfunctional. Much as chronic sleepiness has given me insomnia, my lifelong hunger has had an anorexic effect. I can tell you the amount of calories in most foods even though I otherwise have a really shitty memory.