Succeeding With Narcolepsy
Famous Narcoleptics and Famous People with Narcolepsy
From Wikipedia -
Teresa Nielsen Hayden (born March 21, 1956) is an American science fiction editor, fanzine writer, essayist, and teacher. She is a consulting editor for Tor Books. She has also worked for Federated Media Publishing, where in 2007 she revived the comment section for the blog Boing Boing. Nielsen Hayden has been nominated for Hugo Awards five times.
Born Teresa Nielsen, she grew up in a Mormon household in Mesa, Arizona, but was excommunicated from The Church of Jesus Christ of Latter-day Saints in 1980 for her support of the Equal Rights Amendment. In her youth, she served as a page in the Arizona House of Representatives. She appended Hayden to her name upon marrying the former Patrick Hayden in 1979; he also took her name, becoming Patrick Nielsen Hayden. The two of them were active members of science fiction fandom and collaborated on various fanzines, including the Hugo-nominated Izzard.
In 1985, she and her husband were TransAtlantic Fan Fund delegates to Europe for Eastercon. Over the next few years, the Nielsen Haydens published at least three TAFF trip reports. From 1985 to 1989, she served on the editorial board of The Little Magazine, a poetry magazine.
She is a former managing editor and, now, consulting editor at Tor Books. In 1994, a collection of her essays, Making Book (ISBN 0-915368-55-2), was published by NESFA Press. It is now in its third printing. The second printing is the preferred edition.
She is also one of the regular instructors for the writing workshop Viable Paradise.
Outside the science-fiction community, Nielsen Hayden is probably best known for her weblog, Making Light, where she writes about a wide range of subjects such as animal hoarding, publishing scams, astroturfing, and global political events. She is the first recorded Internet editor to practice disemvoweling of the entire text of offensive posts; the term itself was coined in a Making Light post by Arthur Hlavaty. She was the first lead comments moderator at the popular blog Boing Boing when it reopened its comments feature in 2007. In June, 2008, a controversy on Boing Boing concerning the "unpublication" of all articles that mention Sex-Columnist Violet Blue has generated criticism of some of her moderation techniques, including disemvowelment.
I have narcolepsy. Like insomniacs, I spend my life feeling like I’ve just gone days without sleep. In their case it’s warranted: they really haven’t slept. That’s not my problem. Sleep is never far from me. If it were water, I’d be living in a tidal marsh.
My favorite description of narcolepsy came from one of my early neurologists. He said, “Sleep isn’t just one thing. It’s a lot of different parts stuck together. With narcoleptics, those parts come unstuck, and drift into your waking hours.” This is true. Start with the obvious component: excessive daytime sleepiness. It gets all over everything. If we’re not medicated, we’re constantly nodding off at inappropriate moments.
Our other bizarre-seeming symptoms are partial sets of normal sleep. Sleep paralysis, which usually shows up during the sleep-wake transition, is the paralysis you normally have during dreaming that keeps you from acting out your dreams. Hypnogogic hallucinations are the dream itself, occuring when you’re partly or wholly awake. They can be terrifying. I’ve had my scariest ones while driving too late at night, back before I was diagnosed. A huge black pit yawned open in the middle of an interstate. A long-legged roadside sign picked up its poles and stalked across the highway like a giant wading bird. The white and yellow stripes marking a winding mountain road’s lanes and shoulders and centerline started peeling up like ribbons at my approach, and went flying head-high past my windows.
These days, I don’t drive when I’m that tired. You shouldn’t either.
Cataplexy’s the gaudiest of my symptoms. It’s formally defined as a sudden loss of muscle tone that’s triggered by strong emotion. In my case, this means that if a joke is funny and takes me by surprise, I collapse like a marionette whose strings have been cut. Thus my openness about having narcolepsy: I have no hope of concealing it. And anyway, why should I bother? I fall over, I get up again. It’s harmless. The only actual problem is that other people may be distressed when it happens. The solution is to warn them in advance. If they’re still distressed after that, it’s their problem, not mine.
As far as I can tell—it’s hard to take surveys of such a sleepily disorganized population—I cope pretty well for someone with a severe case. I’ve been lucky in my husband, Patrick, who’s been unendingly patient with me, not that you’d know it to listen to him some days. I’ve also been fortunate to be a member of the science fiction community, whose unflappably practical acceptance of disability runs so deep that they’d be confused if you referred to it as tolerance.
After a while, though, strategies become second nature. You automatically brace yourself when you stand or sit. Since you almost always feel tired, you find other ways to monitor your energy and mental acuity. For instance, when I’m fatigued my opposed-thumb handgrip becomes unreliable. If I look down and realize I’m holding my coffee mug or pen with my other four fingers—it’s another kind of bracing—I know I’m getting tired. If I’m having trouble remembering proper names, I know my math and navigation skills will be unreliable, and vice-versa. If I have a major task to do that involves any of those three abilities, it’s best to do it in the morning.
The single hardest task has been relearning how to write. All my old techniques stopped working for me a year or two in. I couldn’t keep track of my points, or find my way from one of them to the next, which meant my prose kept taking wrong turns, wandering off into dead ends and unintended digressions. Working out a new set of techniques was immensely frustrating. Fortunately, no one had told me at the time that narcoleptics aren’t supposed to be able to write. I might have believed them.
This is how I finally found out: A week or two after NESFA Press informed me that they’d be publishing a collection of my essays, Dr. Goswami of Montefiori Hospital’s Narcolepsy Project had phoned to check up on me. I was still in that happy, fizzy state writers get into when they first hear they’re going to have a book published.
“So, how are you doing?” asked Dr. Goswami. “What’s happening with you?”
“I have a book coming out,” I said.
There was a long pause. “How did you do that?” she asked, a little sharply.
I was puzzled. “They decided they wanted to publish it, so they asked me, and I said yes,” I told her. I’d been working in publishing for a long time. How else would you do it?
That’s when she told me that narcoleptics can’t write. As she explained it, they crank a blank sheet of paper into the typewriters (or, these days, open a blank document on their computer), stare at it for a while, and go to sleep.
I understood that. When I write, sleep is never far away. It seeps in through the gaps, pauses, arbitrary transitions, approximate meanings, false starts, and boring bits of all description. I’ve learned that my only recourse is to find something interesting to write about, and keep writing about it until I’m done. If I can do that, I won’t fall asleep.
I won’t claim the method’s made me a better writer. I have no idea whether it has or not. What I know is that narcolepsy has made me a different writer: not what I intended to be, just what I can be.
Tereas Nielson Hayden
is an American science fiction editor, fanzine writer, essayist, and teacher. She is a consulting editor for Tor Books. She has also worked for Federated Media Publishing, where in 2007 she revived the comment section for the blog Boing Boing. Nielsen Hayden has been nominated for Hugo Awards five times. From Wikipedia,
The Trouble with Sleep
Published in shorter form in the Observer, April 26, 2008. Copyright © 2008 by Teresa Nielsen Hayden. Found Here .... http://nielsenhayden.com/narcolepsy_observer.html