There she was, sporting that blue and white dated eye-sore of an ensemble and eagerly heading to the break room. "I'm not that hungry" she thought as she entered the stuffy room, littered with dirty plates and overflowing ashtrays positioned in the exact spots from several days before. "That spot will do" she thought as she made her way into the right hand corner of the room leaving the door only slightly ajar.
She carefully settled herself in, moving the items which lay in front of her a good arms length away. She made a couple more shifts in the chair and a scratch or two here and there where her skin was irritated by the rough checkered polyester. "There, ready." With her arms intertwined, she lay her head as comfortably as possible settling in for this shift's brief siesta. There she was on a beautiful summer day, a full 18 years young, catching a survival nap hunched over a dirty restaurant break room table.
Yup. That was me nearly thirty years ago. A teenager needing a nap after only a few hours on shift as a waitress. The answer to your next question is no, it was not due to partying late the night before. I was a typical young adult home from college for the summer needing naps in the middle of the day. It would be another seven confusing years and many more naps later before I would learn of my narcolepsy diagnosis. I don't think I thought much about it back when I snoozed hanging over the break room table in the back of Friendly's restaurant in Hyannis, on Cape Cod, where I grew up. Along the way, however, the efforts to get those zzz's became more frantic; the locations, more daring. Being desperate enough to lock the door to the small counseling office I used at my graduate school internship, about a year before I discovered my condition, and laying on the cold hard floor with my bunched up jacket as a pillow was for me, no pun intended, a wake up call.
Hey, it's not like they were paying me. I was an intern. I would, however, in future positions, come to have my share of paid naps. I got real good at covering too. Pretending to be checking charts stored directly behind the door, which I "accidentally" locked, was my reason at the residential program I worked at for seven years post-diagnosis. If a client knocked, I was checking charts and would be "just a minute". If they slept late, then, well, I joined them, finding good enough comfort with my feet up on the desk leaning slightly back in the one chair out of window view.
The ideal scenario came when I did individual counseling in a room with a love seat sofa in it. I scheduled my own appointments and could schedule my naps and set an alarm. Being fee-for-service meant my naps were on my time. No wonder they call it a love seat. My drowsy self had a lot of post meridiem slumber on that sofa.
Drowsy. That is the word which I feel best describes the sleepiness of narcolepsy. At the risk of seeming to embellish, this is not the tired which non-affected people describe when overworked or when experiencing the impact of the occasional poor night's sleep. It is the drowsy you feel when you are trying to stay awake and almost can't. It is the drowsy a college student feels while in class the day after pulling an "all nighter" to get a procrastinated term paper in on time. It is the drowsy a Red Sox fan feels when the game goes into extra innings but they finally go to bed because they "just can't keeps their eyes open another minute" (ok, maybe not the diehard fans!). It is this kind of drowsy every day for a good part or most of the day; usually until it is time to go to sleep.
This is where trying to explain narcolepsy goes from tricky to bizarre. The best general description I have ever read of how to briefly describe narcolepsy is that it is a disorder of sleep/wake cycle "confusion" How else would it make sense that someone who can barely keep their eyes open during the day lies wide awake and frustrated at bedtime? That's right, struggling to stay awake during the day then suffering from insomnia, to a greater or lesser degree, at night. The insomnia is without daytime naps to make sleep at night difficult and the daytime drowsiness of narcolepsy happens with or without the sleeplessness at night. The brain of the narcoleptic suffers sleep/wake cycle confusion, and it is quite confusing indeed.
This excessive daytime drowsiness (EDD) is the one symptom common to all narcoleptics. There are other symptoms which are not shared by all sufferers. This is where bizarre goes to a whole other level. Among narcoleptic support circles, both on and off-line, we often refer to ourselves as either having narcolepsy with cataplexy (NWC) or narcolepsy without cataplexy (NWOC). I am a NWOC, so I cannot speak of the dread, inconvenience, embarrassment or fear in experiencing cataplexy. The sudden complete loss of muscle tone, usually triggered by strong emotions, creates challenges and requires planning of which I cannot even imagine. Depending on how severe it is, this, as well as the extent of one's EDD, can deem an individual disabled and sometimes even not able to drive.
My EDD has never got in the way of my driving. I have, however, pulled over for a stretch or even an occasional nap. There have also been more times than I would have liked when a bad night's sleep meant canceling plans. I spent a number of years taking jobs and planning my entire schedule around my unpredictable sleep needs. A poor night's sleep could throw me off for a week or more and necessitate some of those desperate attempts to catch some Zzzzs at strange times and risky places.
Narcolepsy doesn't end there though and despite the gratitude I have for not suffering with cataplexy and never experiencing any indications of needing to relinquish my driver's license, I have yet to describe the horror I endured for most of my young adult years. Perhaps this was why sleeping nestled on the break room table didn't much stand out in my memory. Back then, a mysterious tormenter entered my life and threatened my sense of normalcy. A terrifying affliction, which, like the EDD, was rooted in my then undiscovered neurological condition. This tormenter had me thinking I might be going mad. The reality, though, is more transient and less predictable than madness. A frightening and seemingly random mingling of air gasping paralysis and a barrage of phantom assaults. Sound improbable? A bit sensationalized? Stay tuned to discover the very real and bizarre world of sleep paralysis and hypnogogic and hypnopompic hallucinations.
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