Sleep’s Choice: Living with Narcolepsy

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

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 over my face and down the back of

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