Narcoleptic
Steve Miller  /  AP file
Wayne Worcestor, a life long sufferer of narcolepsy, lays down for a nap on his office futon at his University of Connecticut office.
By
updated 5/16/2005 12:40:10 PM ET 2005-05-16T16:40:10

I’ve never had trouble falling asleep.

I have dozed off on trains and snoozed until I missed not only my stop but my entire state. I have slumbered standing under a steaming shower and been shocked awake, looking like a candidate for a full-body Botox, when the water turned cold. My dentist has had to shake me awake to continue drilling my teeth.

It’s an odd thing, being on the verge of unconsciousness all the time.

The government has a word for people like me: dangerous. We cause roughly 100,000 traffic accidents every year, according to the National Highway Traffic Safety Administration. In the process, we injure about 71,000 men, women and children, including ourselves, and send 1,550 people to early graves.

So when my own misadventures in wakefulness started to include unfriendly car horns waking me at traffic lights, I figured I’d better get professional help.

Dr. Marc Kawalick, medical director of the Sleep Disorders Center at New Britain General Hospital in Connecticut, had a ready smile and a vise for a handshake. His staff had told me to keep a sleep diary for a couple of weeks — a record of when I slept at night and when I felt tired by day. The doctor carefully reviewed it.

“There does seem to be a pattern,” he said, “but we’ll see.”

I took a test and was proud of scoring 23 out of 25 possible points on the Epworth Sleepiness Scale— until I learned it was like golf: Low score wins.

“And you snore, you said?”

“It wakes even me sometimes.”

One night a few weeks later, I donned pajamas in one of the center’s hospital bedrooms. The silence was dense. Some mausoleums are not as quiet. It felt unnatural, and that was before an attendant pasted 22 electrodes all over my head, face, chin, chest, stomach and legs. By the time she was done harnessing a snarl of wires to the electrodes, all of my secrets were ready for broadcast. “This is radio Worcester with the news...”

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Being an experienced reporter of the human condition, I suspected that some people might not be able to sleep trussed up like a madman’s science experiment. But I knew that I would, and I did.

Kawalick also ordered a Multiple Sleep Latency Test, a monitoring of my wakefulness at two-hour intervals for the rest of the day. I welcomed such thoroughness and began to understand the expense of it. The overnight test alone could cost as much as $2,000. I was thankful for good health insurance.

I was different
It took three weeks for my results to be evaluated, more than enough time for me to ponder my lifelong problem — four decades’ worth, going all the way back to high school in Keene, N.H., in the early 1960s.

Before my father died, he made me a rock maple desk so I’d have a place of my own to do schoolwork; and this I attempted, five nights a week, while listening to Top 40 rock on my Magnavox radio. I usually picked up the countdown in the low 30s; but by the time it reached the single digits, my head slumped onto the desk, drooling onto “Macbeth,” who deserved it, or “Silas Marner,” who didn’t.

The truth that emerges through those years is this: Although I was reasonably bright, I never was going to excel at anything requiring prolonged concentration.

I fell asleep so regularly in my afternoon chemistry class that the teacher got tired of waking me. Eventually, he seated me on a high, backless lab stool, my notebook open flat across my knees. On the second day of this torment, my eyes closed and I toppled hard to the floor.

I can still see the teacher, all bone and hard angles, rimless eyeglasses under a shock of white hair; and I can hear him hoot: “Gotcha, Worcester! Now stay awake.”

He might as well have ordered me to fly.

Teachers, family, most of the adults in my life, formed a chorus: “How can you be tired at your age? Know how you spell that? L-A-Z-Y.”

I figured that everyone got as tired as I did and just handled it better. I was different, maybe inferior — too darned listless to have much hope of making my way in the world.

I wonder now what I might have learned had I been as awake as everyone else. Maybe I could have mastered more languages than English and a little Latin. Maybe I would have taken ninth-grade algebra only once. Maybe I could have understood something about physics.

All right, probably not that; but who knows?

'You have narcoplepsy'
I wonder, too, if the depression and anger that complicated and soured relationships for most of my life were problems unto themselves or rooted in my indescribable weariness.

I do know this: After weighing years of what had been, against intimations of what might have been, I feel sad and oddly removed from major parts of my own life.

My high school grades were good enough to get me into the state university. When I mustered the discipline to attend classes, my lecture notes consisted of a few legible paragraphs followed by indecipherable scrawls that drifted off the page.

Joining 200 other students for a geology midterm, I awoke an hour later with no one left in the amphitheater but me and the scowling teacher. He snatched my exam and walked off shaking his head.

My grades were not swell. After two semesters, I slinked home in shame and went to work in a furniture factory. Through a haze of spray lacquer and sawdust, I got a quick glimpse of the rest of my life. So I saved as much as I could, and after a year returned to the university, chastened and determined.

This time I had a strategy: Take afternoon and evening classes, study subjects I loved, and study obsessively in odd hours of wakefulness. But I could not will myself to stay awake, even in my favorite cinema classes. When the lights went out, so did I. I caught the opening credits of “Birth of a Nation,” and “Citizen Kane,” along with an impressionist’s odd assortment of dimly glimpsed scenes. I had to see a movie twice to see it once all the way through.

On a date, I could be a laugh riot, and I’ll leave it at that.

Then came the night that I drove a Ford Falcon wagon straight off a dark, empty New Hampshire highway, my foot a dead weight on the accelerator. I roared down an embankment, tore down 350 feet of barbed-wire fence and ripped out the undercarriage on fieldstones.

I awoke to see the limb of an apple tree fill my headlights and made it to the floor just as the windshield blew straight into the back seat.

Somehow I stayed alive long enough, and learned enough, to attend the best journalism graduate school in the country and get a job at a fine daily newspaper.

News is all the time, so I could sleep for 14 hours and then do a full day’s work, or sleep for four hours and grab a nap at my desk. As long as I got the story, no one cared. For the first time in my life, my inclination to function without regard for the clock was not a handicap. Ah, those were the days. Or were they nights?

Occasionally, though, there were glitches.

One evening, I was assigned to watch a televised address by President Carter with a Brown University political scientist. We took comfortable seats in the newspaper’s editorial library, where mahogany panels and antique furnishings bespoke good breeding and gravity of thought.

The president spoke for about 20 minutes; I slept for 17.

The professor was gracious. He woke me to say what he thought of the speech and I wrote the story. Until it was in print and had withstood public scrutiny, I mentioned my untimely nap to no one.

Given the persistence of such episodes over the years, the results of the tests administered by Dr. Kawalick should not have been a surprise.

“You have narcolepsy,” he said.

“Are you sure?”

A remarkable difference
The overnight test had proved, as medical folks are inclined to say, “unremarkable.” The daytime test was anything but. Kawalick used unflattering words like “extreme,” “abnormal” and “pathologic.”

I had not merely fallen asleep in the middle of the day — more than once. I had skipped the first stage and plummeted straight into REM (Rapid Eye Movement) sleep, the mysterious realm in which we dream. Most people take from 16 to 90 minutes to get there. Slackers! I needed an average of only 1.4 minutes.

Narcolepsy. I already knew a bit about it — that it is neither fatal (except when combined with heavy machinery) nor curable, but that it carries with it an annoyingly understandable lack of sympathy.

“Well, what now?” I asked the doctor.

Scientists had recently discovered that narcolepsy appears to be caused by the lack of a chemical neurotransmitter in the hypothalamus at the base of the brain. The scientists’ best guess is that it is destroyed by an attack on the immune system. The discovery has been hailed as the most significant step in the understanding of narcolepsy since 1877, when the disorder was first described in Germany. The hope is that by manipulating levels of chemicals, science some day may be able to cure narcolepsy.

But for now, Kawalick said, all one could do is try to control it. He prescribed modafanil, patented only months earlier by Cephalon Inc., and marketed as Provigil.

“It’s very effective,” Kawalick said. “It’s nonaddicting, and we see very few side effects.”

He also advised me to take a multivitamin and be ruthless about getting eight hours of sleep every night.

I followed the instructions, and the difference was remarkable. I no longer felt tired all the time. But with this new vitality came an acute awareness of just how much of a problem my narcolepsy had been, and for how long. I felt like a dunce for not having known. Turns out, I wasn’t the only one.

'A functional, compromised awareness'
Sleep disorders are grossly under-diagnosed, and usually diagnosed late — an average of 15 years late, according to the National Sleep Foundation.

“Compared with a broken leg or something equally visible,” Kawalick said, “sleep complaints usually have just been treated as nuisances” by both patients and doctors.

“Nobody could see the issue,” he said. “The irony was that it was staring us in the face all along. The first two notations in every medical report are always, ’Patient is awake, alert.’ They’re the starting point, basic to everything. So is sleep, and that’s finally sinking in. The change over the past few years has been nothing short of amazing.”

In 1988, the year the hospital’s Sleep Disorders Center opened, Kawalick and his staff conducted about 100 tests. This year, the center expects to conduct more than 1,600. And drugs such as modafanil have given doctors the ability to treat narcolepsy more effectively.

Gradually, my daily dose had to be increased to offset other medication for less interesting maladies, and faster than you can say “better living through chemistry,” it was costing about $20 a day to keep me awake.

After nearly four years of taking the drug faithfully, I was certain I had my narcolepsy in hand.

That was an illusion.

On Feb. 21, 2003, I was alone in my Toyota in high-speed, 5 p.m. traffic on the outskirts of Providence, R.I. I don’t remember getting drowsy. I do remember bolting upright when I hit the rear bumper of a pickup truck and began pushing it off the road. There were no injuries, nearly a miracle by anyone’s standards.

“And you had no warning?” Kawalick asked. “No nodding-off just before the accident?

“No,” I said. “Not that I can recall.”

“Anything in the past few weeks?”

I paused long enough to suggest stupidity. A week before the accident, same time of day, I had nodded off at a stop light. I’d been doing so well that I had shrugged it off as a fluke.

“All right,” Kawalick said, “I’m telling you officially that you cannot drive safely right now.”

In nearly every state, such a warning takes you off the road until the doctor tells you otherwise. California is even tougher, banning diagnosed narcoleptics from driving.

Kawalick tested me again, and I failed again, miserably. He increased my dosage of modafanil, added Ritalin, and told me I now needed nine hours of sleep nightly along with my daily nap.

It worked. Seven weeks after the accident, I was able to pass the wakefulness test and resume driving.

Still, I am wary. I trust myself to drive only short distances, and only if I’ve napped. No exceptions.

I told Kawalick I never would have driven a car if I’d had any reason to think I was a menace. And then I told myself the same thing. In fear, I said it over and over until the truth of it was as palpable and real as I knew it to be, and I could say honestly to myself, “Yes. I would never have driven.”

But my intentions were beside the point.

My wakefulness may never have been total. It may not be now. It may never be. I am left with a functional, compromised awareness swirling across a thin and treacherous surface.

Beneath it, at the core of me, is narcolepsy — just a fancy name for exhaustion. Utter, complete and irresistible.

EDITOR’S NOTE — Wayne Worcester is a professor of journalism at the University of Connecticut

© 2012 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

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