Sleep’s Choice: Living with Narcolepsy

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Date:
Friday, October 12, 2012

haven’t slept in over two full days, pleasantries fall by the wayside.  The slight suggestion of sleep turns into a hellish siren – incessant screeching demanding that I shut up, lie down, and drift off to dreamland.  All other thoughts and feelings disappear, and in that moment, I’m chained to sleep.

There is no cure for narcolepsy – no known way to replace or mimic the cells that regulate the proper functioning of the sleep/wake cycle.  Sleepiness may never be the pleasant passing it used to be, but I’ve stopped fighting it.  I’ve realized that the weight on my skull is not to be ignored.  I’ve given up my special tactics, they don’t work.  I know now that sleep always wins, which makes the game a lot easier to play.     

When I sense sleep lurking behind me, even in the far distance, I start preparing for its arrival.  If I’m driving, I pull over to the best possible spot.  If I’m out in public, I try to reach a bathroom or semi-private space.  Lying down is ideal, but sitting with my head supported works too.  I let sleep take me as soon as possible now, it washes over me for fifteen minutes to an hour and then it lets go.  As quickly as it came, sleep disappears and I return to myself, rising to stand on my own two feet again.   

There’s no exact science to my safety and survival, but I’ve grown accustomed to dancing in the daylight with sleep.  It was haphazard at first, but even this strange existence has a rhythm of its own.  I listen closely for when it’s my turn to lead and when to follow.  Our steps remain small, but we’re picking up speed.

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Julie Flygare, JD, is a writer, runner and health advocate. She received her BA from Brown University and her JD from Boston College Law School. In 2010, she ran the Boston Marathon raising funds for narcolepsy research. Julie is writing a memoir about her experience with narcolepsy. Her story has been featured by NBC Universal, ABC