What's there to be afraid of?

In January 2023, I was diagnosed with narcolepsy. This is one of those segments of my life that both fits well and feels totally out of the blue at the same time. In high school I slept 9 hours a night and, at least early on, practically leapt out of bed in the morning. After my senior year, though, I basically hit for the cycle in terms of sleep ailments: insomnia, frequent sleep paralysis, a mildly-worrisome reliance on sleep meds. This culminated in a long stretch post-college where I often woke up in the morning with a headache and brain fog. It got to the point where I had trouble remembering things I should have known: the name of a loose-but-recent acquaintance, the street two blocks over. Eventually, I decided I needed to figure out the root cause.

So I bucked up and did some in-the-lab sleep tests because I thought, towards the end of this saga, that I probably had sleep apnea or something. (Maybe that'd explain the headaches and grogginess in the morning...) As part of the lab experience, they made me take a multiple sleep latency test to check for narcolepsy. For the uninitiated, the MSLT consists of five naps spaced an hour or two apart throughout the day. Because nothing in medicine is ever that easy, you're of course wired up like a potato clock (EEG), and the naps are only 15 minutes long. The point, as I understand it, is to measure how quickly you move into REM sleep.

Quick science primer, for those who care

According to some random articles I just read ^[1][2] , REM sleep usually starts around 60-90 minutes after you fall asleep. (Remember that for a minute.) Your brain progresses through three stages of non-REM sleep, then a short period of REM rounds out the cycle. An average person will run through four or five cycles per night— and each cycle, the REM period gets a little longer. Why is REM sleep important? A lot of memory consolidation occurs during it, it may be involved in brain development, and *waves hands* it's stuck with us on an evolutionary scale so it's probably doing something useful. (Let's not talk about wisdom teeth until I can think up a better argument.)

Back to the good stuff

I remember being mildly annoyed that I had to take the MSLT. It would eat up a whole day, undoubtedly cost more money, and I knew there was zero chance I had narcolepsy. I wasn't falling asleep headfirst into my oatmeal in the morning, ipso facto no narcolepsy. Oh, how modern medicine loves to prove me wrong.

A few weeks and a $1,500 out-of-pocket later, I got my lab results back. (Oooo look out, it's the American medical system 🎃 Verrrry spooooky) Over the phone, I was informed that I didn't have sleep apnea; I did, however, absolutely crush the narco test. Of the five naps I took, I hit REM in three of them, and the average time to REM in those naps was something like two or three minutes. When I talked to a neurologist about the results, he said from reading the charts alone he'd have thought I had type 1 (read: face-in-oatmeal) narcolepsy. I'll take this as a win.

So I was diagnosed with type 2 narcolepsy, which is much more common than type 1: about 80% of narco cases are type 2 (henceforth T2). T2 does not feature cataplexy, the sudden loss of muscle tone that sends you crumpling on the floor. Instead, T2 narcolepsy mostly just means you're excessively sleepy, your REM cycle is messed up, and you likely have adjacent sleep issues like insomnia or sleep apnea. There's no cure, but there are medications you can take that are supposed to help with the symptoms. Thankfully, my symptoms are often minor to the point of me gaslighting myself about whether the diagnoses might've been a mistake, so I haven't needed to change my life in any drastic way beyond trying to guarantee a consistent bedtime and 8+ hours a night. Still, it can be difficult at times. I've had many days where I felt like I had to choose between an afternoon nap and smashing my head through a wall for a jolt. Early on, I also had recurring sleep paralysis, often associated with narcolepsy.

Sleep paralysis: it's like dying, but it can happen every week

Before it happened to me, I'd never heard of sleep paralysis, so I lacked the conceptual framework for figuring out why I awoke suddenly in the middle of the night, my heart beating out of my chest, unable to move. During REM sleep, your body loses muscle tone— previously hypothesized to be necessary to keep you from acting out your dreams, although apparently we do some dreaming in non-REM sleep ^[3] , so this may not be the reason. But either way, being conscious during this (*waves hands again*) is bad news. In my experience, you wake up and...

1. realize you can't move anything except your eyes and neck
2. your heart beats faster and louder than you thought possible
3. you experience an unmitigated, primal feeling of terror, possibly linked to a dream/hallucination or maybe just because it's fucking terrifying to be inexplicably unable to move

The first time I had sleep paralysis, I was waking up from a bad dream where one of my siblings got kidnapped. (Yeah, I know, scary things always sound stupid when you write them out. Just trust me that it was gripping at the time.) From where I was laying— on my back, in the guest bedroom in my parents' house— I thought I saw a shadowy figure dip into the en-suite bathroom, leaving the door ajar. Simultaneously, I discovered I couldn't move any part of my body except my neck, and found myself frantically craning around while trying to regain mobility in my limbs. I mean, when you think there's an intruder in your room and you can't move, you bet you'll be craning around so you have a full view of whatever terrible thing is about to happen to you.

Anyway, this felt like it lasted 15 minutes, but was likely only two or three. Gradually, I was able to wiggle my fingers and toes, then move my arms and legs a bit, and then I was back to normal. Scared shitless, but normal. I was awake another hour typing "what the fuck just happened to me" into my phone and trying to calm down. One piece of advice I took away from the internet that night is that if you experience sleep paralysis, you should try to wiggle your toes and fingers, and you'll gradually regain muscle tone throughout your body. I'm not sure if this speeds the process up at all, but it at least feels like progress, which takes off some of the edge.

I ended up having sleep paralysis semi-regularly for the next couple months, and experienced all sorts of unique and terrifying spooks. My highlight reel would be: the time I was sleeping on my side and woke up unable to move, knowing there was a person with a knife standing behind me; waking up to the deafening roar of a T-Rex hunching over me; and watching a child at the foot of my bed turn around and run into my closet. Creeped out yet? Imagine how I felt. It got to the point where I'd wake up, instantly know that I was in a bout of sleep paralysis, and I wouldn't even try to move— not a muscle— because I figured if I didn't try to move, I wouldn't be freaked out by the fact that I couldn't. (There's that brilliant logic I was looking for earlier.) I also sometimes woke up drumming my fingers and wiggling my toes, which makes me think I had been dreaming I was having sleep paralysis. Pretty meta.

Alright, so what's the scary part?

Despite being the most Halloween-y of everything I've said so far, I'm not really afraid of sleep paralysis. I'd gotten more or less used to it, and it hasn't happened to me in a long time. No, my fear stems from the more recent poor-sleep symptoms I've had: brain fog, forgetfulness, inability to remember certain details. I hate being unable to recall things that I should know. If that's how my brain works at 26, what's the rest of my life going to look like? On top of that, I'm afraid of the idea that I might be very deterministic: put me into the same scenario 10 times, and I'll have the exact same response every time. Coupled with an inability to remember I've been there before, the rest of my life could be a hell of quietly bumbling through the same interactions, acting according to habit instead of consciously making decisions at every turn.

I don't want to be a little black box that just translates an input— a greeting, an environmental cue, whatever— into an output thought or action or emotion. I'm not religious, but I don't want to surrender the notion that humans are intrinsically unknowable: that there's something innate to humanity that makes us capable of surprising each other. That hero who dove into a raging river to save a drowning child didn't just do it because his brain synthesized the environmental data, ran an algorithm on it, and got back the impulse to act. He did it because who the fuck knows why? That's just how it happened, and maybe if you dropped him into that situation again he'd act differently. Maybe we're not predestined to fall into every mistake we'll ever make. Maybe a little bit of randomness gets salted into all of our decisions so we don't walk ourselves into a rut without realizing it.

Lost the thread? Me too, a bit. That's a sign that I've done enough pontificating, I suppose.

I hope that wherever you are, you had a happy Halloween full of candy and jump scares (as opposed to slow-burning train wreck scares like this, I guess )👻