My Toxic Relationship With Sleep: A Realistic Portrait of Narcolepsy
In the movies, narcolepsy is depicted as a person falling asleep with their face in their food, or while standing straight up in the middle of a busy room, or mid-sentence during an important discussion.
In Deuce Bigalow: Male Gigolo, the narcoleptic character even falls asleep in the middle of throwing a bowling ball and lands face first in the bowling lane, unaroused. While this is meant to be a comical exaggeration of narcolepsy symptoms, it creates an unrealistic portrayal of this sleeping disorder.
What I knew about narcolepsy before my diagnosis
Before my diagnosis, I had heard of narcolepsy only in passing. What I “knew” was people with narcolepsy fall asleep at random. I wasn’t even sure it was a real condition. When I came across a person with narcolepsy in an unrelated Facebook group, suddenly, this was no longer the work of fiction.
My early relationship with sleep
My relationship with sleep has been toxic for as long as I can remember. As a child, I had difficulty sleeping due to an intense fear of the dark. This was caused by dark looming nighttime visitors that would watch me sleep… or not sleep. Because of this, I have always found it easier to sleep during the day. Growing up, I attributed this to being a “night owl,” although I never accomplished anything productive past 11 PM.
During my sophomore year of high school, I gave up on the traditional school schedule. It was impossible to get up at 5:30 AM and not sleep through the entire day after a full night of tossing and turning. It was exhausting. Instead, I decided to register for virtual school and work on my own schedule. Which essentially meant doing schoolwork during small bursts of energy throughout the day with naps in between every few hours.
Sleep was an afterthought
When I dual-enrolled into college the following years, things became more hectic. I was an overachiever: taking up to 7 high school courses online, up to 6 college courses on campus, playing French horn in band, playing violin in orchestra, and, briefly, backstroking for the swim team.
Sleep was an afterthought, something I’d eventually get around to if and when I found time. This usually meant sleeping in my car in between classes or in between homework assignments. Sometimes I would fall asleep in the shower. Unfortunately, sometimes I would fall asleep while driving.
What does narcolepsy really look like?
Narcolepsy presents differently in different people. For me, it feels like the energy is zapped from my body in an instant, like a vampire sucking the life out of me. This intense urge to rest my head overwhelms me, which inevitably leads to a nap.
I don’t fall asleep mid-stride, mid-sentence, or mid-meal. I don’t fall asleep mid-bowling-throw. Although I did fall asleep while walking downstairs once, just long enough to wind up at the bottom of the staircase.
In addition, I have limited energy for other activities. If I go to work for a full 8 hours, it’s difficult to come home and do homework, wash the dishes, or go out with friends. It can even be difficult to stay awake for a full movie. Sometimes all I can do is lie down and close my eyes. Even on medications, I feel the need to lie down by 2 PM and require an afternoon nap to some degree.
Sleep paralysis and hallucinations
Other symptoms may come out to play as well. I usually experience sleep paralysis when woken up abruptly, either by external or internal stimuli. Upon waking up, I find it difficult to move, and I feel an intense pounding in my chest like a jackhammer right where my heart should be. Hallucinations occurred more often in my childhood, or maybe I’m just more aware of what they really are now. Despite this, I still find it difficult to sleep in total darkness without another person in the room.
Narcolepsy is a serious condition
Realistically, narcolepsy is very different from the “fall asleep randomly” stereotype. While these caricatures in films and TV shows are purposely exaggerated to obtain a laugh, they turn narcolepsy into a joking matter when it isn’t. This is a serious condition, one that is chronic and intrusive, one without a cure.
How would you describe your relationship with your doctor?