Big relief: I have a new neurologist, and am once again receiving my old standard medications. They haven’t been working as well as they have in the past, but this is still an improvement, because for a while there I wasn’t getting any at all.
So far, the new doctor seems like a good guy. Here’s a first: he’s funny. You’d think more neurologists would have a sense of humor, but they don’t, so this one’s a find. He and I also exchanged words about my previous neurologist, which was very reassuring.
As part of this change of administration, I’m going to have to do an overnight sleep study next week and another a month later. That’s normal. Whenever I get a new neurologist, I know I’m going to spend some time in a sleep lab with electrodes stuck to every available surface. The good part here is that unlike some sleep tests, these won’t require that I go off all my medications for two weeks.
We’ll look at the test results and go onward from there. This is all very reasonable.
Another reason for optimism is that I think this guy might actually understand my basic position: that in spite of the fact that I have a seriously gaudy case of cataplexy (if you surprise me with a joke, I’ll fall down like a puppet whose strings have been cut), cataplexy is not my biggest concern. I laugh, I fall over, I get back up again: no big deal, except that it sometimes upsets other people, and so far they’ve all survived the shock. I’ll take that any day over the available anti-cataplectic drugs, which render me stunned, forgetful, and mildly incoherent. I don’t think the idea is that they prevent cataplexy by making me so stupid I can’t catch the jokes, but that’s how it works out.
I’ll never forget bowling a strike at a big narcolepsy support group meeting by getting all the medical professionals in the room to drop their jaws simultaneously. I did this by saying “I’d rather fall over.” I explained to them that without anti-cataplectic drugs I had a life, albeit one that intermittently involved falling over; but that when I was on those drugs, I really didn’t have a life at all. I thought this was a reasonable viewpoint, but explaining it didn’t make them stop looking at me as though I were an alien.
I don’t know. Maybe I’m unusually shameless about falling over. The way I see it, my spells of cataplexy are harmless, temporary, not my fault, and—if bystanders feel like asking me what’s going on—can even be educational. However, if people are going to insist that someone in the transaction be embarrassed, I’d lots rather it be them than me. The falling-over thing happens to me much oftener than it happens to them, so having them be the ones who get embarrassed spreads the chagrin around much more equitably.
(I do try to be polite. In the presence of a standup comedian, I sit down.)
What does matter to me? Wakefulness. Maintaining mental alertness. That one gets me where I live. Being undermedicated is like being demoted to a slow-clock-speed single-tasking computer with no proper access to directories, one where you can only find your files by searching for character strings. It just plain sucks.
Physical alertness. That’s important too. It’s hard to have a decent life when you’re weak, clumsy, and constantly feel like you’ve gone 48 hours without sleep.
Integration is the one that’s hard to explain. I don’t lose my faculties evenly. Mathematics, navigation, multitasking, large-scale organization, and a sense of duration fade out first, in approximately that order. Words, text, pictures, and music are more durable; but when you lose your larger road map, you tend to stumble from one still-available neighborhood to another, with undiminished appreciation but not enough volition.
(Furthermore, if I were better medicated, that last paragraph would have less Greco-Latinate vocabulary in it. I can feel the presence of better sentences lurking nearby. I just can’t reach out and grab them. Perhaps another day.)
Integration is important. Way back when I was a literary criticism reference series editor, and was losing my ability to do the kind of large-scale synthesis the job required, I had a neurologist reply to my plea for readjusted meds by saying, “There’s no test we could devise that would show you as being anything other than a very intelligent woman.”
I mark that as the moment when I really started loathing him. Someone who’s hung out his shingle as a neurologist has to know that there’s more to the mind than can be measured by standard IQ tests. Someone who’s decided to specialize in sleep disorders ought not be snotty about anecdotal data, especially when it’s coming from someone who’s been his patient for years and has never lied to him.
“Right now,” I said, speaking rather more slowly and clearly than I had before, “I can’t parse anything more complicated than a Georgette Heyer novel. If I can’t read complex texts, I can’t keep my job as a litcrit editor. If I lose my job, I’ll have neither the income nor the medical coverage to pay for appointments with you.”
Only then did he agree to increase my dosage: despise, despise, despise.
Have I mentioned how hard it is to find a good neurologist who specializes in sleep disorders? As one neurologist explained to me while speaking off the record, the hot research is in other areas, and the money’s in strokes. Narcoleptics are always troublesome and idiopathic, they never get well, and the most effective drugs for their condition will bring you under the scrutiny of the Feds.
Thank goodness for the few doctors who think we’re interesting.*
I just turned 49. I’ve been a diagnosed narcoleptic for more than twenty years now. I have some idea of who and what I am, what I want to do, and what I need if I’m going to do it. I persist in believing that life and narcolepsy can both be managed better than they have been. I go forward in hope.