The Big Z

Originally published in Izzard #7, September 1983, edited by Patrick and Teresa Nielsen Hayden. Copyright © 1983 by Teresa Nielsen Hayden.

“Jerry tells me you’re dropping back to bi-monthly and folding Telos. In a way, I was sort of puzzled. It had not previously entered my head that real-world considerations could in any way apply to Seattle.” —Mike O’Brien
So here it is: we’ve moved to Toronto, giving up our lovely jobs and apartment in Seattle; en route spent a month in Oklahoma; and folded Telos while affecting Izzard’s previously placid disposition with a severe case of irregularity. All thoroughly untidy, and while I’m sure I could explain any single part of it, doing so would involve first explaining something else, which would lead to explaining yet another thing, in infinite regression.

The succinct version goes like this: “A great many things happened. I’m very clear on some of them; others I can recall, but not their significance. And there are some things I seem to remember, but frankly I don’t believe them. I’d be willing to assume that I dreamt the whole thing while lying on a floor somewhere, except that that would not account for my current location and condition.”

And then there’s the slightly less succinct version. Most of you will have already heard one way or another that I’ve been diagnosed as having a severe case of narcolepsy, but a quick scan through past Izzards confirms that we’ve never actually come right out and said so.

Begin expository lump: Narcolepsy is a disorder of the central nervous system that hits about one in 10,000 people. It’s incurable, probably hereditary; the first symptoms usually appear around puberty and get worse in early adulthood. Treatment options are limited and not entirely satisfactory, mostly consisting of strong stimulants.

Simplest description: have you ever gone forty-eight hours without sleep? It’s like that all the time. A better way to model its workings is that sleep is not just one thing; it’s a lot of different components stuck together. In narcolepsy, the diverse manifestations of sleeping and waking states keep coming loose and sliding into each other’s territory.

Consider, for a moment, Narcolepsy and her Attendant Constellation of Four Identifying Symptoms as a clutch of eighteenth-century allegorical figures: “In centre, NARCOLEPSY in her aspect as EDS, Excessive Daytime Sleepiness, enthronèd semi-dormant upon a heap of coffee-cups, her head enhalo’d with EEG wires; to her right the figures SLEEP PARALYSIS, garbed in pajamas and nightcap, wrapt roundabout with immobilizing swathes of ducktape, and APNEA, sitting bolt upright in bed with a plastic bag over her head; to the left of the group CATAPLEXY, represented as a woman fall’n limply to the floor, giggling, and HYPNAGOGIC HALLUCINATION, shown with paisley eyeballs, clutching a steering wheel.”

In terms of functional effects, EDS means that unless I take daily doses of prescription-strength speed, I have a semi-perpetual case of the nods. Sleep paralysis, which mostly shows up for a quarter-hour after I wake up, is literally muscular paralysis. It can lead to fuzzy waking thoughts like, “How did I break my spine while I was sleeping? ...No, that’s silly. I’ve had a stroke, is all.” Apnea is the one major symptom I don’t have, and thank heaven, because apneics periodically quit breathing in their sleep until their autonomic nervous system kicks in and says, “Breathe, stupid, breathe!” and they wake up...dozens of times a night. Cataplexy is sudden loss of muscular strength, triggered by some emotion—anger, excitement, surprise; for some poor bastards, sexual arousal—whereupon some bit of the brain shorts out for little while. Every cataplectic has their specific trigger. Mine is being surprised by a joke: hit my funny bone just right and I’ll fall limp on the floor for a few seconds. (As one of my neurologists said, “In the presence of a standup comedian, sit down.”) Finally, hypnogogic hallucinations happen when your body is awake, your eyes are open, and your brain goes into dream-sleep anyway. You can see some weird stuff. A long-legged roadside sign once uprooted its posts and went walking across the road like a giant stork, right in front of my car. I now know better than to drive when I’m tired. End expository lump.

This past spring, Patrick and I realized that I wouldn’t be able to work through the summer as planned. A nasty insidious thing about narcolepsy is the way constant fatigue can chew the insides out of your life. I’ve dropped one activity after another since 1975, always trying to keep my balance, keep up appearances, sure that real soon now I’d get over this virus or case of the blues or whatever it is... Diagnosis let me know I wouldn’t be getting over it, though the medications were initially a considerable relief. But then my symptoms got worse at an alarming rate which a change of neurologists and a hospital stay did nothing to slow, and by the time we decided to leave Seattle, life had shrunk to a routine of staggering to work in the morning and scraping through the day, filing insurance claims, seeing my doctors, and washing the dishes at least once a week. (For the record, both cooking and friendly socializing went before Izzard did.) Then one evening Patrick and I looked at each other and said, “Even if we could make it work, it wouldn’t be worth it. And we’re not going to be able to make it work.”

My neurologist finally said, very kindly but very flatly, that neither he nor Seattle had anything further to offer, and that we’d have to go to a proper sleep-disorders center for diagnosis and treatment. There’s one at Stanford, and we thought first of going there, but Oklahoma turned out to be more feasible. My parents would put us up there for the duration, and would front our travel money. Besides, my mother had an in with one of the founding directors of the sleep center. The only catch was that they were moving back to Arizona at the end of July, making it a now-or-never offer. We packed and ran, and off we went, and that was that.

Life in Seattle was damp, cool, and mostly within walking distance, so Oklahoma was a strange month in a strange place—a city so sprawling that in my parents’ prosperous suburban neighborhood you had to drive to the nearest convenience store. (There are no pedestrians. Everybody has a car, everybody drives.) More elaborate shopping was available a mere twenty or thirty miles away across an alternating landscape of highrise office developments, broad cow pastures and sorghum fields, and huge tracts of houses that had seemingly been built within the last two months. Finding the place was no problem. It was the biggest shopping mall I’d ever seen, half a mile long and four levels high, rising up out of miles of empty grassland like a hockey puck on ice as seen by an approaching pismire.

The weather was thick and hot and steamy, with a constant haze of dust, pollen, and exhaust fumes in the air. Each night, my parents switched on the TV to watch an elaborate half-hour weather report mapping every thunderstorm in the state. “Thunderstorm activity” translates as “possible tornadoes,” a constant worry. If a bad storm approaches Oklahoma City, a flashing beacon will appear in the corner of the TV screen on every channel, signifying “turn to the weather station for news.” We got to see one of those storms, late one afternoon. The sky turned blue-black, the light turned greenish-yellow, I felt my ears pop several times, and then the leading edge of the storm hit with a howl that bent the smaller trees nearly horizontal. By the time the rain reached its full intensity, lightning flashes were constant overhead and the thunder was one great uninterrupted roar, while the front walk ran an inch deep and carried broken-off twigs in its current. Then we had hail the size of marbles, then it rained again, and then it was all over and the sun came out. A middling fair storm, they told me, but not what you’d call history-making.

Periodically we’d drive way down into the middle of Oklahoma City, past the state capitol complex with its oil wells pumping away in the middle of the lawns, and end up at Presbyterian Hospital. The sleep disorder center is a cheerful, high-tech place, full of complicated machinery and complicated patients, and, miraculously, doctors who like people with sleep disorders and specialize in treating them. Most neurologists don’t, you know. The way it was explained to me, there’s more money in strokes, more glamour in epilepsy, and narcoleptics are mostly a pain in the wazoo. They’re hard to diagnose, frustratingly incurable, and the drugs used to treat them (most often Dexedrine or Ritalin) are a strong incitement to both patient fraud and legal officiousness. I’ve never met a neurologist who hasn’t claimed to have been both conned by fake narcoleptics and harassed by the FBI, DEA, or RCMP. They get defensive to the point of paranoia, and commonly refuse to treat the disorder without hard-copy documentation in their files. The standard documentation is an EEG; unfortunately, 30% of all narcoleptics have normal EEGs. I’m part of that 30%.

So it was splendid to deal with medical people who, far from being hostile, thought I was a particularly fetching sort of guinea pig. In gratitude I let them play with my brains a lot, run mysterioso tests, try out all kinds of weird drugs, and ply me with reams of questionnaires. Their pièce de resistance was a day-long goodie known as a Multiple Sleep Latency Test, wherein I was wired like Bride of Frankenstein Meets Radio Shack and put through my paces. At the end of the day Dr. Orr, the director, called us into his office. After some preliminary harrumphing he made his announcement. “The test results,” he said, “are distinctly pathological.”

Patrick and I whooped and hugged each other while we bounced up and down on the sofa. Hot damn, distinctly pathological! Sacred holy hard-copy documentation! It was worth the trouble after all. Three days later I received my “passport,” a handwritten letter on impressive sleep center stationery, attesting that I have severe Polysymptomatic Narcolepsy/Cataplexy Syndrome and can justifiably be given great wads of prescription speed forever and ever world without end amen.

(If all this rejoicing seems odd to you, let me explain that there was no doubt that I have narcolepsy. I have a walloping case of it. We just had to have it show up on some monitor, somewhere, to justify giving me the drugs I’ll be having to take anyway. It’s a matter of perspective.)

The surprise kicker was that I turned out to have another sleep disorder, one even more obscure. It’s called DIMA, “Difficulty Initiating and Maintaining Arousal (Shut Up, Whitmore),” meaning that I have trouble crawling out of REM in the morning. It hits one in 100,000. The sleep center said they’d never seen somebody turn up with both at once, so I hit the statistical jackpot. O lucky me.

A quick dissolve here and we’re back in Toronto, living with Patrick’s parents and trying to figure out what to do with ourselves next. It’s an interesting question. We’re kind of stranded here, not having enough money to move anywhere else at the moment, and also have some difficulty attendant upon earning any, since I can’t legally work in Canada. And even though the various philters and rituals evolved by the doctors in Oklahoma have improved my health considerably, there’s still some doubt as to whether I can work eight hours a day. Six, maybe? As I say, an interesting question.

Therefore, we’re leaving for the Worldcon at 10:00 a.m. tomorrow. It’s as constructive as anything else we could be doing over the weekend. Besides, given that my disability (a.) mostly doesn’t hurt, (b.) isn’t fatal, (c.) won’t get any better if I lie around recuperating, and (d.) won’t get worse if I go jauntering about (within reason), why not? We’ve already given enough years of our lives to the cause of somnolence, and quite frankly, it was boring as hell. As long as I’m awake I might as well do something interesting. Who knows what will turn up?

See you next issue.