Sunday, August 15, 2010


I lose time. Hours, days, weeks, months. I can remember them, but I don't feel like I was actively participating in them. Memories are dreamlike and I can't remember either beginning or end. I lost a week this time. I drifted mentally while doing everything I was supposed to, but I lived in a perpetual fog and acted automatically.

I have narcolepsy. I was diagnosed when I was twenty, at the end of my sophomore year of college. I was napping more than I was awake, hallucinating, and had been losing muscle control as a result of emotions since I was a child. I had a sleep study ordered by my neurologist and was diagnosed, and the diagnosis was reconfirmed when I was 26.

Damn it, it is two days later. I lost track not long into writing this. At least I've been working on my book a lot. It is another time-eater, but not a time-waster by any means.

I gave one of my major characters narcolepsy because it has only rarely been accurately described in fictional literature and on screen. He has my hallucinations, cataplexy, and time-loss. I even gave him my summer time experiment, where I spent a summer between classes sleeping when I was tired to see what my body clock would do. That was the summer right after I was diagnosed, and before I found a medication that worked at all. It was also the summer I wrote The Crystal Lattice.

I am currently unmedicated and have been for several years. I spent a lot of time on a medication called Provigil, but the side effects compromised my health. I was always jittery and never hungry so my weight dropped to 85 lbs. I switched to Ritalin after that, but the effect didn't last long enough and I developed a quick resistance to it. I tried Provigil again a couple years later on orders of a new doctor, but this time it irritated my stomach so much I couldn't keep anything down and my weight started to drop again. I am now just treating my primary coenzyme Q-10 deficiency (autosomal recessive mitochondrial disorder, diagnosed via muscle biopsy when I was 25), and the supplement treatment for that disorder has actually helped my narcolepsy enough that I am functional.

I still have cataplexy, and I still hallucinate. My husband told me I was frantically thrashing and yelling about bugs on the walls a week or so ago. I hallucinated giant butterflies one day in the park while playing frisbee. It doesn't happen very often, but it still happens. I also can lucid dream, hold conversations while dreaming, and am aware of my surroundings while my brain is registering REM on an EEG.

I don't think any of it is so bad. I am intensely creative and am able to be inspired by mundane things. I have an excuse to fall asleep in class, which was upheld by my alma mater's disability services when I was working on my bachelor's. It is not all bad, but my life is dreamtime and I never really know when the next attack will strike. I have a decent amount of control over it since my sleep attacks are overwhelming fatigue and not a sudden drop into sleep, but I don't drive more than 10 miles if I can help it. Narcolepsy is my normal, and though it would sometimes be nice not to have it, it is part of who I am.

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