The Big Sleep

Hi, my name is Sarah and I am a narcoleptic.

OK, while I haven’t announced my condition with brazen acceptance to a semi-circle of strangers drinking watered-down coffee from Styrofoam cups, the term “narcoleptic” has wriggled its way onto my list of defining characteristics, right there with “recent college graduate” and “dog lover.”

I’ve had the symptoms for about eight years. For years, I would routinely sleep for 14-plus hours and still nod off during “Desperate Housewives.” If my presence was not required somewhere (school, work), getting out of bed seemed pointless since I would fall asleep again within an hour. Friends knew better than trying to coax me out of bed, and even my dog learned to hold her bladder for a surprisingly long period of time. Further hindering my motivation was a diagnosis of depression pinned to my shirt at age 18.  Eventually, I resigned myself to being a chronically slothful person.

I made decent grades in college, and was offered a good job at a well-known medical institution as a research coordinator.  But my life revolved around sleeping—including resorting to what I called “toitie naps” (catching some rest in a bathroom stall) during the day when the urge to sleep overwhelmed me.  Falling off the toilet and hitting my head on the stall during a nap didn’t deter the routine. Still, no matter how many naps I took, the sleepiness got worse.  I would nod off during meetings, while driving and even during conversations.  I was not only becoming an embarrassment to myself, but a liability.

At the insistence of my psychiatrist, I made an appointment with a neurologist specializing in sleep disorders.  After ruling out obstructive sleep apnea and restless-leg syndrome through an overnight sleep study, my doctor had me do a “nap study.”  With probes attached to my face and scalp to measure brain waves, I exhibited two of the diagnostic features of narcolepsy: I fell asleep in less than five minutes during each nap trial and immediately slipped into REM, essentially bypassing the first four sleep stages.

Narcolepsy.  Upon hearing the diagnosis my mind began racing.  I thought about a video shown in my 11th-grade psychology class of a narcoleptic dog who collapsed and became temporarily paralyzed after seeing his dinner.  The dog had cataplexy, the loss of muscle control found in narcoleptics. It is typically triggered by strong emotions.  While not all narcoleptics have cataplexy, many do.  Would I suddenly fall over at the sight of a hamburger?  My other immediate fear was the possibility of having my driver’s license revoked.  Or worse, that I would be required to have a special license plate warning other motorists that I’m a mobile narcoleptic.

I wasn’t sure what type of reaction to expect from my family and friends.  I hoped they would now understand the extent of my drowsiness and appreciate its biological basis.  My parents expressed relief that I hadn’t been diagnosed with a fatal disease.  My two best friends immediately e-mailed me a cartoon depicting a job applicant sleeping in an interview and the employer saying, “It says here you have narcolepsy.  What’s that?” and then assured me that they would be more than willing to hold my ponytail at dinner to keep my forehead from hitting the table.  Another friend told me about a policeman from his hometown who had narcolepsy.  After his condition became known, he was referred to by the locals as “Officer Fally-Downy.”

Last week while having a beer with some friends, I suddenly lost the muscle control in my neck and hit my forehead on a water glass sitting on the table.  With that brief event, my future as a narcoleptic with cataplexy was defined.  I now have fally-downy.  True to form, my friends sent me an array of helmet options and offered advice about which would best bring out the color of my eyes.

Narcolepsy is not a laughing matter.  It can have a devastating effect on its host, and has the potential to be extremely dangerous if not well-controlled.  But once the initial panic subsided, I began to feel an overwhelming sense of validation in the diagnosis.  I was neither lazy nor unmotivated.  I could suddenly attribute my lackadaisical lifestyle to a neurological disorder, thereby pardoning my own willpower (or lack thereof).

What’s more, I even consider it a positive addition to my repertoire of interesting characteristics.  Treatment for narcolepsy is far from ideal, but the symptoms can be controlled through basic lifestyle changes and medication.  I now take a cocktail of stimulants throughout the day and understand my condition well enough to appreciate certain limitations.  Although I may never be able to pursue a career as a long-haul truck driver, I am confident that with my newly acquired alertness I can begin to set goals for myself that until recently I would, quite literally, have only been able to dream about.