Sleep’s Choice: Living with Narcolepsy

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Friday, October 12, 2012

over my face and down the back of my neck, did jumping jacks in the handicap stall, pinched my thighs and arms, and slapped myself, hard, across the face.  The slaps were most satisfying, not because they woke me up, but because someone or something else inside of me needed them.  These slaps released a rage in me; a rage for lacking backbone and discipline, for being unable to perform the simplest of simple tasks of  just - staying - awake.  This anger is something that most decent people would never unleash across another’s cheek.  Luckily, no one else’s body was involved in my wrath.

Yet one morning, after years of sleepiness, I awoke from a perfect night’s rest and began working at my bedroom desk.  I was awake for about a half hour before tiredness crept back in and cornered me again.  I looked at my bed - still warm from my night’s shadow.  No, Julie.  I turned back to my computer to continue working.  Soon words from the screen began spiraling through rollercoaster curves inside my head, freed from sentences and paragraphs, they swam in a no-man’s-land between consciousness and unconsciousness.  Finally, sitting upright in my chair, two feet from my pillow-top queen-size mattress, I drifted off to sleep.  Napping in the morning?  I couldn’t be sure, but this didn’t seem right. 

When sleep becomes a problem – it’s usually not sleep that’s really the problem. Sleepiness is a sign of other things; an indicator for another, more real, underlying medical or psychological problem.  Maybe it was depression, though I didn’t feel depressed; I just felt tired. Maybe it was my thyroid.  Tests were conducted – no problem there. Maybe it was sleep apnea, a pulmonary issue of sleeping and breathing.  Yet sleep apnea wasn’t it either. 

Turns out, it was all in my head.  At some point, I don’t know when, I started losing brain cells.  Not just any cells, but a very specific group of cells called hypocretin, tucked away in the almond-sized hypothalamus region deep in the center of the brain.  No one knows exactly