Asleep at the wheel

My father's narcolepsy was humorous, frightening and intriguing.


Chris Colin
May 24, 1999 8:00PM (UTC)

My father turns south. We are going home. Like a picture of night,
the sky is tar, pricked with stars and planets and suggesting more rain.
We've been camping: a wet venture ending with sneezing. I'm 8 and happy -- happy to be in the car, happy to be sneezing, happy to watch the road
beside my father. Under each arched lamp I see a glowing ring of highway,
tight and passed quickly. We're driving fast.

"Remember the opossum?" I ask.

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"Oh yes," my father answers. He makes an opossum expression. The
ghost-faced animal had lurched its way into our tent. Coolly and gently, my
father had rapped it on the nose. Now he is driving with the same coolness,
a father's certainty about major operations, except his eyes are pink again.

"Are you sleepy?" I ask. Even at 8, I understand the trickiness of
certain questions.

"Nope," he says, and adjusts the vent.

"Sure?" I ask.

We drive, still fast. Washington's another hour. I am reluctantly tucking
into sleep position when my father's head drops. We swerve hard, the world
in the windshield pitching right at a nauseating angle. Horns scream as I
grab the wheel. I yank us away from the median rail and wonder if we'll
turn over. My father's head jerks up now and his hands shoot to the wheel.

"Thanks, I got it now," he says.

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Narcolepsy -- the neurological disorder that sends people into frequent and
sudden sleeps -- follows a familiar path, I learn years later: Everyone's
heard of it, no one understands it. Even sleep researchers shrug, helpless to
find a cause or a cure. They know this: Narcolepsy's primary symptom,
excessive daytime sleepiness (EDS), is virtually irresistible. EDS steals
people away mid-sentence, mid-step.

The disorder is marked by an onset of REM sleep almost immediately after
sleep begins, rather than the standard 90 minutes later. Perhaps as a result
of this REM disturbance -- even here researchers must speculate -- the
narcoleptic often experiences intense, nightmarish hallucinations upon losing
consciousness. Another common symptom of the disorder is cataplexy, in which strong emotion -- laughter, anger, surprise, anticipation -- triggers a
sudden episode of muscle weakness. Patients describe laughing fits that leave them conscious but rag-doll limp for several minutes.

Experts can't decide precisely how narcoleptics contract the disorder; it
is hereditary to some extent, but also somewhat environmental. Whereas a child can be born with a genetic predisposition to the disorder, the narcolepsy can remain dormant until activated by such triggers as illness,
stress, drug usage, viral and bacterial agents, abrupt changes in sleep-wake
cycles or even hormonal changes. In one study, researchers
located a gene called HLA-DR2 and/or HLA DQwl in 98 percent of people with narcolepsy -- but one quarter of people without the condition also had one of the same genes. The mystery means no cure. Doctors sometimes prescribe amphetamines to rev up the narcoleptic's mental alertness, but this strategy doesn't approach the roots of the disorder.

Most researchers figure one person in 2000 suffers from some degree of narcolepsy -- just below the incidence of multiple sclerosis -- although the American
Narcolepsy Association says it's more like one in 500. At the heart of the
discrepancy lies the disorder's double heartbreak: For all the reasons people
don't get medical information -- poor dissemination, a lack of educational
funding, incomplete research -- well over half of all narcolepsy sufferers
are said to suffer in the dark. EDS, after all, looks like nothing more than
tiredness to the untrained eye.

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Dismissed as lazy, many undiagnosed narcoleptics move through their lives
in a sleepy cloud of shame. Of the few studies evaluating the disorder's
psychosocial consequences, one claims them to be more devastating than those of epilepsy.

"Go on," I say when I'm 6. My dad's at my bedside with Curious George. "He's
on the ladder, Daddy."

My father labors his chin off his chest. He begins to adjust his eyes to
the book, and to George on the ladder, but drops off again with a jerk. I
pat his knee. There are times when finishing a story is urgent. My father
repeats the exercise, this time shaking his head with dramatic resolve. The
ladder, he says, almost evenly, and that's it. I know the procedure. I take
the book and finish it myself.

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Narcolepsy has degrees, my family learns years later. The experts that know
of my father's world know of its intermittence, too -- that the sleeping is
neither constant nor crushing. Low-grade narcolepsy, my father will repeat,
and shrug. His condition has been explained to him, but it registers on the
level of trivia, of physics information perhaps. That's interesting, he'll
say. He comes from a place where fancy-sounding ailments carry little weight. For those in his vicinity, however, the explanation matters. We are the ones watching conversation fade into sleep, watching as the highway sometimes swerves left.

But for my family, frustration tempers the relief of understanding. How can
years of bewilderment be collapsed into a word? What's more, there's the
silliness of softening a soft word with qualification; low-grade narcolepsy,
we say, and this sometimes feels piddly, a drummed-up debility in an era of
hypersensitivity. Then there's astonishment at our own insensitivity in
these moments.

Indeed, low-grade narcolepsy is different from narcolepsy. My dad's lucky -- just a sleepy guy, really, next to the true-blue narcoleptics. Discussion groups reveal a separate universe, where getting through the day is an accomplishment. Participants in the forums tell of losing jobs, of
losing lovers, of losing respect. In one letter, a man tells a story of
waking among laughing co-workers, coffee grounds spilling out of his mouth.
In another, a woman describes a moment standing before a mirror before an
attack, repeating to herself "I am normal, I am normal, I am normal."

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And yet narcolepsy manages somehow to be funny. In these same discussion
groups, humor surfaces now and then. These are the people driving into trees, but they're also the ones pitching into their soups. "Unhh," my father will say, head rolling, and we will indeed smile. He has nodded off petting cats, shucking corn. Even the words are funny: sleep attack. Like bunny attack. Laughing helps sometimes.

Of course sometimes it doesn't. For the outsider looking in, for the young
son wondering about his disappearing father, laughter doesn't explain much.
In narcolepsy's confusing shadow, the non-narcoleptic is left to his
theories. It is the mystery of the Other World stuffed into a dozen sudden
naps. I blink as my dad is suddenly stolen away to the other world. Potatoes
and salad vanish in favor of sleep and the arcane. This place is the sublime,
with all the compelling incomprehensibility of deep space, and I stare. I'm
still with their potatoes and salad, now a little humdrum, I'm still talking
about my humdrum math test.

But narcolepsy hasn't the luxury of the exotic. As a boy, my father's sleep
excursions struck me as unfortunate but rich, events that left me grabbing
the steering wheel but strangely seduced. I lent a kind of metaphorical
currency to his sleep, and decided he must have enjoyed the wonder of this
strange cosmic place. But I was wrong, his place wasn't cosmic, and sleep was just sleep. Whereas the stargazer enjoys outer-space thoughts, he or she
also enjoys the thinking of the thoughts: How exciting that I cannot imagine
infinity. The narcoleptic, by contrast, is asleep before sleep presents
itself as a notion, an ocean prettied with metaphor to slowly wade out into. There's no wading for my father.

I grew up. I moved to California, a drafty little apartment with stray
cats on the porch. My street is a jumble, and four doors down, beside the
lumber yard and the empty lot with the old sailboat sits something called
the Blind Center, as mysterious as blindness itself. The building is brick
and glass, a single-story '70s affair that might as well hold
dentists. I'm curious -- it seems to have settled in my thoughts as a
symbol of the things I can't know -- but the reflective glass paneling the
front rebuffs my glances. To look inside is to look at myself trying to
look in.

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And this, I realize, is narcolepsy for the loved ones -- you're blind to
see inside, you can only look at yourself looking. The outside versus the
inside; the disorder breaks down thus like the rest of the world. From
without, a universe of depth and rich possibility suggests itself: This
funny snoring man with mouth agape, to a child, must choose sleep over life
for great reason. From within, perhaps a quick dream about monkeys. This was hardly an explanation and as with the Blind Center, I invented a world where mystery replaced the simple hole of not knowing.

My family flies in from the East Coast for their first visit and I'm
excited. And this excitement makes me think: How nice that childhood griefs -- an asleep father, say -- fade into the peace of distance. A thing once
painful because of what it might represent can itself evolve into mere
metaphor: a building with mirrored windows. And I like this lightness -- it's
the joy of letting mystery strip itself away. I'm a sucker for things I don't
know, but even more a sucker for the fiction that the world is really just
an airy and knowable place.

The West Coast is new to my brother and he arrives wide-eyed. Mountains
beside ocean. We pile into my car and drive. The car is rickety -- a slow,
creaking trip across the Bay Bridge and I briefly glimpse how I'm seen in this company: an owner, for all time, of rickety things. My brother sits in the
front with me. We swing through San Francisco's perfect hour, as the sun almost sets and people seem to prepare for pretty light everywhere. I take us up the biggest hill I see. The car groans near the top, near a place where, below, ocean will mix with sky in a hazy orange fog, and near the blind crest where any number of trolleys could be barreling past too fast to stop. My mother briefly collects seat vinyl beneath her nails but we're fine. With the crest to ourselves I point out the sunset, bloody pink as on a raw chicken breast.

"Geez," my mother says, appropriately taken aback. Ridiculously, I'm proud:
like I built this.

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"Geez," my brother says.

"And it's practically free," I say, cocking my head to draw in my father.

"Unhh," he says. His face points toward the heavens. His mouth is an O,
suitable for a plum or a baseball. He's out cold but gently so. "Unhh."

I turn to my brother, who, despite his own share of highway swerves
and truncated bedtime stories, smiles now.

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"Unhh," we say, and of course drive off into the sunset.


Chris Colin

Chris Colin is the author most recently of "Blindsight," published by the Atavist.

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