For the next year and seven months, Dori barely slept. Then the loss became total. The final day of my sister’s life unwound with zero regard for the moon or the sun. She died awake, after twenty days, eleven hours, and fourteen minutes without sleep. Locked flightlessly inside her skull.
As an adolescent, I used to seethe with jealousy, because whereas I got auburn stubs, Dori had these fringed butterfly eyes, jet lashes that curled so outrageously around her Caribbean-green irises that strangers assumed they were drugstore falsies. During her endless Last Day, I remember studying those eyelashes pasted to her skin, at an angle of unrelieved attention. She blinked at me, her thinking slow as syrup, and I wished that she would not smile again, not ever again, not like that, because by that point every smile was an accident, a twitch driven by nothing that I recognized as human. My mouthy, gorgeous, stupid-brave sister Dori, Miss “Drive It Like You Stole It” (even when the only “It” available to us was our great-aunt’s haunted house of a wood-paneled Chrysler—who ever heard of a car with termites?), Miss “Three Jobs, Two College Majors, and There’s a Flask in My Purse” was at this point a nobody. A “vegetable,” as they say—the doctors’ potted plant. And I hated the sight of her facial muscles pumpkin-grinning on the pillow, her pale eyes twitching, and I hated watching her go speechless under the conglomerate weight of so much unrelenting looking and thinking and listening and feeling, her mind worn thin by the sound of every cough and the plinking moisture of every raindrop, these noises exploding like grenades through her naked awareness—her mind crushed, in the end, by an avalanche of waking moments. Once sleep stopped melting time for Dori, she could not dig herself out. She was buried under snowflakes, minutes to hours to months.
The official cause of death was organ failure.
I know it doesn’t sound like much, on paper.
The same month Dori died, the CDC released the first case definition of the new terminal insomnia. Early estimates suggested that several hundred people in the United States were suffering from a total sleep loss; one year after my sister’s funeral, this number had swelled to twenty thousand. “Orexins,” the media taught us to call them. So that, almost immediately, the disorder became a metonym for its chosen victims. George Washington University Hospital opened the first dedicated critical-care insomnia ward—it was full within days. Congress allocated two billion for research.
It was not long thereafter that the mechanics of sleep donation were refined by Gould’s team at the DC sleep clinic, and the Slumber Corps began its good work.
In the months following the CDC release, many people dismissed the disorder as an exaggeration of a universal American condition. Who was sleeping enough? Nobody! The “crisis” seemed like more TV hyperbole designed to keep us glued to our screens, watching mattress commercials. America, in the childhood of our understanding of the insomnia crisis, called the first victims liars, hypochondriacs, wackos, crank-addicts, insurance defrauders, anxious plagiarists of “real,” biological disorders.
Now, of course, we know all too well that the insomnia epidemic is real. You need only consult its victims’ pink-spoked eyeballs, their gaunt faces engraved behind moonlit windows. Neuroscientists have since concluded that for a significant portion of the country’s population, the signaling function of the neuropeptide orexin has become impaired. Orexin deficiency has been linked to human narcolepsy, but this dysfunction causes the opposite effect: an untenable hyperarousal. Sleep becomes impossible. People like Dori remain conscious for months and even years, hostages of their brain’s chemicals, trapped in the vigilance state that eventually kills them.
What triggers the dysfunction in some brains as opposed to others? Do these people have some inherited anomaly—an underlying genetic predisposition to wakefulness? A higher-wattage consciousness? Or is the trigger environmental? Nobody knows. It’s the two-billion-dollar question. To date, every known case of the orexin-disruption has occurred in the Americas; nobody knows why this should be so, either. Some speculate that the sickness is connected to the oceans’ tides, magnetism, the poles, the hemispheres, the net of light and shadow on the globe.
Other pundits promise, with weird relish, that we are seeing “the end of sleep as we know it.” TV has become a glum Hall of Prophets: Dr. Daveesha Frank from the Boston Sleep Tank, who speaks like a robot programmed to self-destruct; dour professors wearing sunflower-yellow ties that film well. According to these professional Cassandras, sleep has been chased off the globe by our twenty-four-hour news cycle, our polluted skies and crops and waterways, the bald eyeballs of our glowing devices. We Americans are sitting in an electric chair that we engineered. What becomes of our circadian rhythms, the “old, glad harmonies” that leaped through us like the vascular thrust of water through leaves of grass? Bummer news, Walt: that song’s done. And the endogenous clock, the suprachiasmatic nucleus, hereditary prize of every human, the tiny star cluster of neurons in the hypothalamus that regulates our yawning appetites for hard winter light and spacey blackness, the master clock that syncs us to one another, and to the earth’s rotation, to the sun and the moon? To all the sister kingdoms on the twenty-four-hour circuit? Bacteria, Gila monsters, great sequoias, blue whales, orange groves, bear cubs, mustangs, toadstools, leopards, golden eagles, hyacinths, hippopotamuses, those tiny wizards—the butterflies, those glue artists—the arachnids, and all the sequined life on the seafloor, the black urchins that improbably still clock time with us? Bummer news, everyone: The clock stops for humanity. Time as we conceive it will soon become an anachronism. Time, as our species has lived it on this planet, will cease to exist. No more dark/light binary. No more active red daytime, blue evening dissolving. No longer is sunshine the coagulant of consciousness, causing us to clot into personalities, to cohere once more on our pillows each morning. These TV scientists predict “a global desertification of dreams.” Soon, they promise, the disruption will afflict all of us. Sleep will go extinct. And eventually, unless we can find some way to synthesize it, so will we.
Generally, I’m mistrustful of these warblers, who do the dread crescendo. But I’m embarrassed to report that the Slumber Corps has borrowed a page from their playbook, “eschatological manipulation.” At Sleep Drives in Alabama, Georgia, and Florida, we are test-screening a documentary created by those ratings whores, the worst of the cable news fear lords, “Is Sleep Going Extinct?” I’m afraid to say it’s been very effective. We show it at night, like a popcorn horror flick. Terror, we’ve discovered, is a powerful donation-stimulant.
Meanwhile, sleep clinics in this country are operating at two hundred percent capacity; Night Worlds have sprouted all over America. Night Worlds have some kinship with the circled wagon trains of the West: the sleepless closing ranks against the night. They form spontaneously, on the margins of cities, but have developed an oddly standard layout: mazes of tents, nocturnally blooming speakeasies. Night World merchants cater to the sleepless ones with black-market remedies: “moonlamps” to ease the dreariness of unremitting wakefulness, “cave medicines” derived from ancient myrtles and lichens. Songbirds from Germany and Thailand are sold as “biocures”—their binary chirping is said to reprogram dreams into the mind. Some Night Worlds function as quasi-legal campgrounds for homeless and unemployable insomniacs. These places are tolerated by the local authorities because they help the hospitals with overflow. At the ERs, many new insomniacs are being turned away nightly. Sent back to twist in exile on their mattresses, cutting their eyes on the moon’s blade until a donor can be found for them. They await our call. Until they are eligible for a sleep donation, there is nothing to be done for the majority of these people.
At Sleep Drives, we also screen the now-infamous footage of one of the first cases of terminal insomnia: a young Guyanese woman from a suburb of Houston. After five weeks of near-total sleep loss, her braids have turned totally white. Her face is child-smooth. She presented at the Gould clinic in DC aft
er fourteen complete days and nights without cycling into sleep. She is wearing a fluffy pink sweater, lilting gibberish. Her eyes bulge so that you cannot see the lids.
Nothing newsworthy, you might correctly assert, about the public performance of illness. Death’s dress rehearsal is ongoing at any bus stop in America, where sick people beg us not for minutes of sleep but for metallic dollar-flakes, wealth dandruff. Long before the sleep crisis, our downtown was a maze of sidewalk asylums. Immobilized people form a human shrubbery behind the courthouse, their lips whispering, their pink and brown palms extended, flat fronds shivering with need. Which is all to say: nothing the least bit strange to us, about public psychosis.
What makes this footage harrowing is its juxtaposition with a photograph of this Guyanese woman taken just five months earlier, before the onset of her orexin-disruption: her hazel eyes were shining and calm, tenanted by a sane woman, tethered to her memories; the eyes were seeing, presumably, only what was visible to everyone else in the room; her face was happy and plump, irrigated by sleep.
The young Guyanese insomniac never slept another minute. Unbeknownst to her doctors at the time of filming, she had already entered her LD, the ultimate interval of wakefulness that precedes death. LD for Last Day was a new acronym then, midwifed into the language by the sleep crisis; today, it’s universal med-slang. Kids of six use “LD-er” as a playground insult. Schools instruct children to treat orexins as “ordinary” humans (an instruction that contains its own defeat, doesn’t it?). The video is now nine years old. We’ll keep looping her forever, for donors. Twelve days after they shot her segment, she died. Her true name was then released to the public, like a genie unbottled: Carolina Belle Duncan, age nineteen. Today she is a CDC celebrity: the first recorded death from the orexin-impairment. Dori was the East Coast’s inaugural mortality, the fourteenth recorded death nationally.
A Johns Hopkins neurologist claimed that a mere two hours of recovery sleep would have prevented Carolina’s death from cardiac arrest. Nine to thirteen hours, he said, would have ended her hallucinations and readmitted her to the waking world with stable vital signs. The insomnia’s worst effects could be undone that speedily. One night’s sleep would have saved her life. He compared it to getting an emergency tank of oxygen to a stranded diver.
Nine to thirteen hours—that figure haunted me.
It haunted everybody, apparently.
Without sleep, how long can a person live? The record was set last year when a woman in Devil’s Creek, Nebraska, collapsed after twenty-two days. Five hundred and twenty-eight hours, without a minute of replacement sleep. Masked like a raccoon, at half her original weight. Her body had rejected all transfusions. She was a white lady, but her face had turned a blotchy pale blue. Yet this is a deceptive figure: twenty-two days. Months before her death, the Devil’s Creek woman had reported a complete cessation of sleep. Many insomniacs who claim they haven’t slept a wink in years are, unwittingly, lying to us. Patients swear they are awake. But the EEGs show that regions of the brain are going off-line. Neuronal networks shut down, fire on again, in a sort of cortical round-robin. “Microsleeps.” Rolling blackouts. Some areas go dark for whole minutes; still the insomniac claims to be fully awake. In effect, the brain doses itself with eyedroppers of unconsciousness. We think microsleep must account for certain orexins’ surprising longevity; some LD-ers, like Dori, can hang on for weeks before death from cardiac arrest, stroke, multiple organ failure.
Since joining the Slumber Corps, I’ve become obsessed with statistics. For bedside reading, I’ll sometimes turn to our brochures. I do a dozy arithmetic under the skirted blue lamp, until these numbers add up to a temporary conviction that I deserve a night’s sleep.
18 Insomniacs Will Dream Tonight, Thanks to Your Gift.
Less than 1% of donors experience any kind of adverse reaction.
Since its inception, this branch of the Slumber Corps has helped over 3,000 insomniacs.
There are close to 250,000 people currently on our waiting lists nationwide. Priority always goes to urgency of need.
And my favorite:
34% of Insomniacs Will Regain Their Natural Ability to Sleep after a SINGLE TRANSFUSION.
Our work really does save lives. Nobody can deny that extraordinary fact. During the early trials of the sleep-donation procedure, Gould’s team made an astonishing finding. For roughly a third of patients, full recovery from the orexin-disorder is possible after a single ten-hour transfusion.
Doctors cannot yet account for why some patients continue to suffer from the orexin disruption and require multiple transfusions, whereas others are “reset,” cured. The mode of action is unknown. Some doctors posit that, like an electroconvulsive therapy treatment, or electroshock therapy, a sleep transfusion can produce profound changes in a recipient’s brain chemistry. Cases do exist where a single session of ECT results in some shockingly happy customers, says Dr. Gary Peebles, the director of the National Sleep Bank (and where is the humor transfusion of authentically funny jokes for Dr. Peebles? I wonder). In these cases, the administration of a strong electric current through the suffering patient’s brain reverses all symptoms of catatonia and depression, breaks cycles of mania, and relieves many other plaguing shadows and diagnosable sorrows that can be found in the DSM-XII. Our researchers, says Dr. Peebles, are working to discover just why the delivery of sleep to a dreamless body can and does produce a full recovery for certain patients—and only a temporary reprieve for others.
To date, every former insomniac who regained the ability to sleep, post-transfusion, remains fully rehabilitated. We have no recorded relapses. No longer are these patients dependent on the sleep of strangers. Post-transfusion, they can achieve REM in their home bedrooms: Colors of their own freakish and individual manufacture flood their minds again, plots spiral up, imaginary faces and animals bubble and flume. They dream. It’s heartbreaking, of course, when this does not happen. Some people, we now fear, might require weekly sleep transfusions for the rest of their lives. A blank check to float their nights.
The Slumber Corps pledges to get sleep to every insomniac “for as long as her or his need persists.” That’s our mission statement. Where is all that sleep going to come from, you’re wondering? Us, too. Fiscally, it’s a bankrupting promise. Mathematically, I’m told, it’s a future lie. In five years, the Slumber Corps’ monumental commitment to these insomniacs may well be an abandoned ideal, like a temple buried in the jungle. Smart people on the Slumber Corps’ advisory board call our pledge a “pipe dream,” as dangerous as anything we test for at the Elmhurst, New Jersey, sleep-processing plant. Yet we continue to make this promise to our incurables.
On nights when sleep continues to elude me, I consult my “zeros.” My own recruitment stats.
And when even this does not work?
On my worst nights, when my eyes are burning and dawn is two hours away, I’ll give up on fact, give in to fantasy. I’ll shut my eyes and pretend that Dori is receiving one of these transfusions. They were not available, of course, when she needed them—when she lived. Which was not so long ago, not at all. The sun rises, and she’s home. Birdsong is twittering in the air, proof of invisible birds. Dori is back in the world. Her eyes are open on her pillow, and they are sea green and absolutely clear. Void of all nightmares. No earthworm nest disturbs her now, no crumb of boneyard dirt. Her waking is an instantaneous rebirth. Her hair spools onto the pillowcase, happy memories are coiling in her head, and tomorrow is laid out at her feet, a net of yellow light and blue shadow that stretches from bed frame to door.
And then?
Written out like this, you know, it sounds a little Frankenstein.
Pinkly flushed, arisen, my sister startles from the room. Grape bunches of curls spill down the back of her pajamas. She is the age she would be today: twenty-nine.
BABY A
Last July, th
e Supreme Court ruled that babies could be donors, with their parents’ consent. Babies are deep, rich wells for us. They serenely churn forth a pure, bracing sleep, with zero adult terror corrupting it. Since the new law went into effect, we Corps volunteers have been trying, with renewed zeal, to sign up whole families. We’ll tap the parents’ sleep, which is often useless to us (a fact we don’t advertise, of course), just to get a baby’s donation. “Pump me first,” the mothers implore, so overwrought that they vitiate their draws with cortisone. We do not discuss this with the women—their polluted sleep, the futility of their generosity. We draw from parents because the experience reassures them. Really, what the nurses are draining is these mothers’ fear of the unknown. They wake up, refreshed, with no memory of the draw, awash in goodwill.
Then we enroll their children in our donor program.
Four months ago, I pitched Mrs. Harkonnen at a drive outside the Piggly Wiggly grocery. I spotted a baby’s face pinking out of her pretty woven papoose, and I introduced myself. Mrs. Harkonnen was an easy convert to the Slumber Corps, crying freely at Dori’s death story; the baby witnessed our exchange with that eerie calm babies have, dry-eyed and blank. Was her husband with her? No? Could I arrange to speak with him, get his signature? To dispatch a Sleep Van, we’d need both parents’ consent.
One week later, I paid a visit to 3300 Cedar Ridge Parkway to collect the consent forms. Mrs. Harkonnen greeted me on the porch with a shy smile, her hands starfished out in front of her; the nail polish was still wet. She’d remembered my name: “Trish! Come on in.” She’d put on red lipstick, was ready with a pot of decaf. Upstairs, the baby was crying; we’d both smiled automatically at the sound. “My husband’s with her. He signed your papers.” She pushed over the consent form; I saw that Felix Harkonnen’s autograph was freshly inked. “He’s a little worried about the procedure—she’s our first child, you know. He’s a very protective father.”
Sleep Donation Page 2
