Sleep’s Choice: Living with Narcolepsy

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Date:
Friday, October 12, 2012
Julie Flygare, JD

Sleep’s Choice Every day, at least once, but usually twice, my head gets heavy, as if a weight sits on my skull, and I know, right then, that sleep is coming.  If I don’t put my head down immediately, the heaviness only gets heavier.  My joints begin to ache and a wave of nausea comes over me.  And if I still don’t sleep, the back of my eyes begin to burn and I start losing contact with myself – where I am and what I’m doing.  Eventually, this leads to sleep – not because I’ve reached a safe and appropriate resting spot, but because I had no choice.  Sleep chose me. 

These sleep attacks are a fundamental part of my daily routine – as automatic and compulsive as eating food and drinking water.  Yet for many years, I believed I was better than sleep; I thought I could brush it off with a coffee or a red bull.  One time in college, while studying late at night in the library, my sleepiness felt unusually powerful, but then came the flood of legitimate excuses.  I was a varsity squash player with a strenuous practice schedule. I was either up late studying or out late partying.  It all made sense.  Perfect sense.  Everyone feels tired at times, it’s only natural, I thought.   

Sleepiness is not problematic.  Quite the opposite – it’s a welcome calming, a joyful sign of dreams to come, a precious passing, a floating away from life’s stresses, a first taste of the ultimate release- the sweet peace- of sleep.   

For years, I believed that my sleepiness was harmless.  I was just a good sleeper.  No, I was a great sleeper - it was my special talent.  I sat through lectures, drove cars, cooked meals, visited museums, watched movies, wrote papers, and took exams – all the time fighting a heaviness of excruciating depths that I thought I could will away. 

When things got worse, I developed a series of special tactics to perform in any bathroom to wake myself up.  I ran cold water