The Monster In The Closet
An open letter to people with narcolepsy
I’m not sure what it’s like for other people with narcolepsy. I was only diagnosed a few years ago. There are several symptoms I could complain about, but I’m sure, narcolepsy being a spectrum disorder, that I don’t have it all that bad. The toughest part for me is how much I dream.
They plastered a bunch of sensors to my head and body and I slept. Then the next day I did this thing where I would sleep for 30 minutes, then be awake for 90. There were six rounds of that I think. Maybe just five.
A few days after the tests I had a regular office visit so the doc could go over what they’d turned up in the tests. She had a lot of printed material from my evening and day of being plugged into machines. She showed me a graph of what my brain does as I sleep at night, and what it does when I nap for 30 minutes.
The line went sharply up and sharply down and just kept bobbing back and forth all night. It never stayed at one level for very long. The more she looked at my results and tried to explain them to me the more intrigued she became, but I was still lost.
She excused herself, left the room, and in a few minutes came back with a colleague, who also became intrigued with my paperwork. By the end of my visit there were 3 of them hovering over my charts and basically ignoring me, other than to look up at me like I was a piece of art they couldn’t decide they thought was brilliant or boring.
Then I asked what I thought was a pretty straightforward question.
“What does normal sleep look like?”
This question bored the other doctors and they turned to leave the room, thanking their colleague (though not her subject). My doctor then explained the levels of sleep. She drew a rough graph of what normal sleep looks like so I could compare it to my own.
Normal sleep looked like a stick drawing of the grand canyon to me. It started as a flat horizontal line, dropped down to a level, stayed there for awhile, dropped again, stayed again, dropped again, stayed, then climbed back up with the same sort of duration for each level.
With both my chart and the stick drawing laid out side by side I understood a little better. I was not the grand canyon. I didn’t look like any natural rock formation. To me my graph looked like the EKG of a man having a violent heart attack or something.
“What are these?”
I asked about points along my graph where the line would suddenly shoot to the top of the paper and then shoot straight back down.
“Those are instances of wakefulness.”
That’s in quotation marks, but she probably said it differently. I asked for clarification on what she meant and she said that throughout the night, for periods of 1 or 2 minutes, I was completely awake and then almost instantly in deep sleep for the same short burst of 1 or 2 minutes.
She explained that I spend most of my night in REM. That’s where all my dreams come in. The percent for my study was around 45. It’s about 15 percent for normal folks. But that percent is misleading. It sounds like I’m just humming along in REM for long periods of time.
The test where I was asked to sleep for 30 minutes, then be awake for 90, was one of the things my doctor seemed to really love. Apparently not every person with narcolepsy falls asleep on command as well as I do. Especially given the awkward environment and the, “ready, set, sleep!’ commands. Some people can’t get to sleep all 5 or 6 times they are commanded too. I did every time. The longest it took me to fall asleep was 9 minutes. My doctor was especially pleased with an instance where,
“Not only did you fall asleep, you were in REM within 90 seconds.”
So looking again at my overnight graph I could now discern that I fall asleep fast. I get to a level of sleep that’s not supposed to happen for 60 to 90 minutes within the first few minutes of sleep. But then instead of getting cozy with any level of sleep I bounce around all night.
I dream for ten minutes, then I’m in deep sleep for 2, then I dream for 5, then fully awake for 1 or 2, then maybe 3 more minutes of dreaming, then deep sleep or awake again. It’s unpredictable and random as hell.
The dreaming has always seemed pretty uninterrupted to me. It’s like if you’re dreaming when your morning alarm goes off, you push snooze,and then sometimes fall back into the same dream. My moments of deep sleep or wakefulness very rarely interrupt the flow of dreaming.
It’s like watching TV all night. And the spikes of being awake or in deep sleep are not even like a commercial break. It’s like watching 4 hours of television over the course of 8 hours, during which time you pause the TV at random intervals while still staring at the frozen image on the screen.
Sometimes waking up from an especially dreamy evening I think to myself, Thank God. I’m awake. Now I can get some rest.
My doctor was almost giddy. She had a strange smile as she was giving me advice on how to cope. She told me there were really strong drugs for both sleeping sounder and staying awake, but it sounded to me like a lifetime regiment of speed and downers. I asked what else I could do and she said basically, “if you get tired, sleep.”
It was simultaneously flattering and annoying that I was being enjoyed. And narcolepsy is covered in the Americans with Disabilities Act.
I often think of my technician the night of my study. I asked him if it was rough having a schedule where he was awake all night watching people sleep. He said it could get rough listening to Apnea sufferers snore all night, but that getting “one of you guys” was fun.
“Glad I could liven up your evening.”
An open letter to people with narcolepsy
As long as healthcare continues to be a business, people will never be as important as the bottom line
After 42 years without it, I finally get a good night’s rest