The Real Narcolepsy

I was officially diagnosed with narcolepsy after I was sixteen, having done a full-night sleep study and a multiple sleep latency test (MSLT).  When we’d first approached a doctor about my sleeping issues—insomnia, terrifying periods of sleep paralysis, falling asleep in class—my dad and I scoffed at the suggested diagnosis of narcolepsy. 

We both figured that all of these problems stemmed from my insomnia and nothing else.  But in retrospect, the diagnosis fit like a glove.  Since I was a girl, I suffered from waking hallucinations, vivid dreams, a constant urge to nap, the ability to sleep twenty or more hours in a single day.  It turned out that I had (and still have) a fairly severe manifestation of the disease.  In fact, my new sleep doctor (sigh) laughed when he read the results of my most recent MSLT, because in his words, he’s “never seen a sleepier person.”

Narcolepsy is serious disease that—undiagnosed or untreated—can lead to unemployment, fractured relationships and, probably most importantly, injury or death.  I’ve fallen asleep while driving and crashed into a pasture fence; in college, I once had a sleep attack while walking down a set of campus stairs, slipped and tumbled unconscious to the stone landing.  I say this to illustrate that while narcolepsy is principally portrayed in pop culture for its power to amuse, it also needs to be taken seriously.  Movies like Rat Race and Deuce Bigalow not only perpetuate an unrealistic depiction of narcolepsy (which is a very nuanced disease with degrees of severity) but they also add to the idea that narcolepsy is not a “real” disease.  It’s something funny, something played for laughs, or it’s a plot device in books like Sleeper Code.  And if something’s not real then it can be controlled, right?  And if it can be controlled, then people with N are just choosing to be sleepy all the time … then they can help it and they should know better.

Bad depictions in popular culture foster the narrative of the lazy narcoleptic: Sleepy people are just lazy people who need more discipline.  Their torpor is a bad habit.  They are late/unproductive/lethargic employees.  They are uncaring lovers.  They are absent friends.  And so on and so on.  But actually, no one with narcolepsy wants to be late to work or to nap through a date.  Our brains are cannibalizing the protein hypocretin that makes our sleep centers function, and no treatment, no matter how effective, can stop that.  It’s a miserable disorder that robs you of energy and opportunity.

But I don’t mean to be all negative.  There have been some very good works of art featuring narcolepsy; books like Pete Hautman’s Godless (where the character suffers from possibly undiagnosed narcolepsy or idiopathic hypersomnia,) The Mysterious Benedict Society, and movies like My Own Private Idaho either approach narcolepsy in a gentle, but accurate way, or in Idaho’s case, in a painfully compelling way.  And in a world where an adult man can seriously ask me if narcoleptics are like fainting goats (true story,) I’m thinking we need more books and movies that approach the illness as it truly is—something layered, something difficult, and yes, sometimes funny too.