Excerpt, Chapter 1: Sizing Up the Beast

Mention trouble sleeping, and you’ll get an earful of advice. “Have you tried melatonin?” “It could be your mattress.” “My mother swears by chamomile tea.” If you’re a bona fide insomniac like me, or even if you only tangle with the sleep demon in bouts, you’ve probably tried these things and more. But you may as well take baby aspirin for a migraine. None of these common cures for sleeplessness remotely touches what you’re grappling with.

Advice from sleep experts, available in lists of do’s and don’ts on the web and in magazines, may be more useful, or not. The idea of going to bed and getting up at the same time every day may strike you as fine for the office computer, but too rigid for yourself. Setting your bed and wake time according to the clock may also be incompatible with the demands of family and job. Daily exercise, another item in the do column, confers plenty of health benefits. But it may or may not help your sleep. And among the insomniac’s thou-shalt-nots–do not read or watch television or movies in bed–are activities that you may have discovered sometimes court rather than sabotage sleep.

Less helpful yet are the assumptions about insomnia that drift like dust motes in the air, exposed when normal sleepers decide it’s time to shine a ray of light on your predicament. “Can’t sleep? There must be something bothering you.” “You’ve got to find ways to cut down on stress.” “Maybe it’s time to give up coffee.” “Have you considered psychotherapy? You’ve got to tackle the problem at its source.” Maybe you agree with some of these common beliefs. Or maybe you’re a skeptic, like me. Maybe this sort of chatter is something you tune out.

What’s real is the struggle going on in your life, which, if you’ve picked up this book, you may be waging on your own, with or without the assistance of pills. And for many insomniacs that struggle is harder than commonly supposed.

Bouts of insomnia leave Abby, a stay-at-home mom, feeling angry all the time, and concerned about her ability to do what needs to be done. “I just can’t function,” she said. “I have no patience with my children. I tend to be very reactive, and anything can set me off. I go into crying spells. It’s a lot like PMS.”

Kay, a full-time student, experiences mixed-up sensations day and night: “I feel like I’m sort of in the mud, I’m constantly trying to get through the mud. I spend so much energy in my day trying to function on no sleep that by the time it’s time for sleep the next night, I’m just wired.”

Concern with functioning is a feature of many insomniacs’ lives. Your nights and days get weirdly scrambled, your body thrums with energy at night and feels depleted during the daytime. Like chronic pain or depression, insomnia can affect you 24/7.

For other insomniacs, the problem goes beyond functioning to surviving: “When I’m going through a bad stretch,” said Julie, whose children and part-time job keep her feeling constantly behind, “there are times when I feel that all I’m doing is surviving, that my life is passing me by and I’m not really enjoying it.”

“I was starting to survive on two or three hours a night,” Liz, a medical librarian, said. “I wasn’t getting to sleep till five in morning, and then getting back up again at seven to get to work. And I thought, ‘I can’t keep doing this. This is insane.’”

Function and survive: These words, which crop up time and time again in the narratives of insomniacs I interviewed, speak of adversity and struggle. They suggest a deprivation as basic as lack of food, shelter, clothing, or air. Yet for much of the twentieth century the affliction was dismissed as trivial and “all in the head.”

“Of course there is something the matter with these people,” said Woods Hutchinson, a physician writing in Good Housekeeping magazine, about insomnia sufferers nearly a hundred years ago. “Perfectly healthy, normal human beings don’t imagine themselves sick, nor do people who are ‘all there’ become utter fools gratuitously. For even the vagaries of imaginary disease there is a reason, but to cure many of these cases would mean taking the whole nervous system to pieces and putting it together again differently, and the results would hardly be worth the trouble, even if it could be done.”

Hardly worth the trouble? Fortunately, many sleep researchers today disagree. But the insomniac’s cup remains less than full. Nearly a century has passed since Hutchinson registered his views, and scientists are still endeavoring to take the nervous system to pieces to discover what the matter is.

Progress has been made. Some scientific studies suggest that compared to normal sleepers, insomniacs are more physiologically aroused. We tend to have elevated metabolic rates and, at night, lower heart rate variability, suggesting greater activity of the sympathetic nervous system (which is associated with stress and the fight-or-flight response). Some research shows we have higher-than-normal levels of alerting hormones in our blood and urine.

Other research highlights differences in the brain. Sleep studies show that during non-REM (quiet) sleep, characterized by reduced metabolic activity and an absence of dreaming, insomniacs’ brains are prone to high-frequency waveforms more typically associated with being awake. Investigators have used neuroimaging technologies to enlarge this finding. While good sleepers’ brains are mostly quiet during non-REM sleep, key areas of insomniacs’ brains are busy metabolizing glucose. This excessive neural activity may reflect a low-level sensory processing that is occurring even as we sleep.

But the picture gleaned from measurements of bodily and brain functions is incomplete. More is known about environmental, behavioral and, psychological factors contributing to insomnia. Meanwhile the big insomnia story, which may one day include an explanation of its genetic underpinnings and the mechanistic pathways by which it develops, is a work in progress. Insomnia is still treated as a subjective complaint that exists because we feel its effects.

For decades my insomnia was something I did my best to ignore. It was a fairly steady nemesis at night, keeping my body achy and tense, and unleashing a jumble of negative thoughts. But by day, though I might feel fatigued and dull, I strove to put it behind me and plunge into my activities. There was nothing to gain by doing otherwise. My wakeful nights were unpleasant enough; why let the sleep demon wreck my days? There were ways to manage insomnia and I’d tried them all. I’d used antihistamines. I’d listened to audiotapes and done relaxation exercises. I’d consulted doctors, I’d taken sleeping pills. And grudgingly, I observed many of the do’s and don’ts I read about in advice columns for the sleepless.I felt I was managing as best I could. Besides, I asked myself, how much attention did insomnia really deserve? One didn’t die of it. Problems like schizophrenia, major depression, and chronic pain were surely more debilitating. If insomnia had a place on the menu of chronic health disorders, was it not “lite” fare? From any perspective, it made no sense to dwell on it, especially when thinking about insomnia only seemed to make it worse.

Over the years insomnia became an elephant in my bedroom: something massively encroaching on my space, and yet something whose impact I strove, at least in the light of day, to shut my eyes to. The strategy worked pretty well into my late forties. But then something changed. It wasn’t that my insomnia grew worse. My bouts of wakefulness had always occurred for stretches of three or four weeks, broken by occasional “catch-up” nights in which I slept hungrily and desperately as though my life depended on it. That pattern remained fixed. But I simply couldn’t continue pretending I was leading the kind of life I wanted. Insomnia was making me miserable at night, and it was diminishing the quality of my days. And the only way I could think to change that was to confront what for so long I had dismissed. I decided both to search inside myself for answers and to immerse myself in scientific research in hopes of finally gaining the upper hand.

I saw from the start that the scientific research held promise. My first trip to a medical library acquainted me with no fewer than seven academic journals dedicated exclusively to studies on sleep and sleep disorders. A cursory inspection of their contents revealed vast quantities of information I’d never heard about in the popular press. Often insomnia was described as a disorder of “hyperarousal,” suggesting much study of the brain and the nervous system lay ahead. My plan was also to investigate insomnia therapies of all sorts: homegrown and experimental, as well as the drugs and cognitive-behavioral treatments approved by the medical establishment. So, armed with two college syllabuses on sleep, and with access to a top-tier medical library and help from sleep experts, I set out on my quest.

But my attempts to explore my own insomnia were initially less encouraging. I had spent decades playing down its impact. No sooner did I set out to confront it than I balked. There was something unsettling about my insomnia, something that warned me away. I wanted to look at it squarely in the face but felt apprehensive about what I’d find.

These weren’t the only challenges ahead. Before I could evaluate what science had to say about insomnia, I needed to know how people experienced the affliction. I knew about my own experience, and I’d talked to my brother and my sister-in-law about theirs. I’d heard about the “fair to middling” sleep of my father, a stoic when it came to enduring health problems, who reported that a doctor once assured him that “rest was as good as sleep.” Some 30 million Americans supposedly suffered insomnia just as we did, but apart from these few insomnia sufferers in my extended family, I didn’t know a single one. I would need to hear their stories somehow.

I dipped into the world of story and myth on the chance that literary figures might enlarge my understanding of insomnia. There, sleeplessness was often connected to heightened emotional states. Lovesickness was one. Medea, when she first laid eyes on Jason in his quest for the Golden Fleece, was so inflamed with passion that she could not sleep. Queen Dido was smitten with Aeneas; she too could not sleep. Her grief at his departure was so overwhelming that it destroyed her sleep and eventually cost her her life.

Sleeplessness was one of the main signs of courtly love. In Chaucer’s “The Knight’s Tale,” young Arcite, exiled from the land of his ladylove, was “bereft” of sleep, and his eyes were “hollow, and grisly to behold.” The Black Knight in the Book of the Duchess suffered a similar fate: Grief over the death of his lady left him in a state where “my day is night” and “my sleep [is] waking.” Don Quixote, too, was famously sleepless pining for Dulcinea.

Another emotion that interfered with sleep in Biblical and literary narratives was guilt. In the Old Testament, King Darius’s “sleep fled from him” after he threw Daniel into the lions’ den. King Ahasueras could not sleep at the thought of having failed to reward Mordecai for saving his life. Shakespeare’s Macbeth, in murdering Duncan, was so consumed with guilt that he “murdered” sleep (his own). In Crime and Punishment, Raskolnikov’s murder of an old pawnbroker and her sister left him with so much guilt that he could not sleep. In myth and literature, powerful emotion led to the ruin of sleep.

These narratives were certainly compelling, yet not very enlightening when it came to helping me understand persistent insomnia. Plenty of people I knew lost sleep over love troubles or a guilty conscience. But eventually they recovered their equilibrium and went back to sleeping as they had before. The insomnia sufferers whose stories I wanted to hear were those who, like me, were afflicted with trouble sleeping even when life was moving along on an even keel. They might feel exhausted, their muscles tired and their minds dull–just the ingredients you’d imagine would lead to a good night’s sleep–yet they had problems getting to sleep, staying asleep, or waking early.

Authors writing about their own sleepless nights have not always found insomnia to be disagreeable. The Romanian writer Emil Cioran acknowledged his insomnia was probably harmful to his health, yet it also forced him to confront the “dangerous, harmful truths” that became his life’s work to set down in prose. “When I was about twenty I stopped sleeping and I consider that the grandest tragedy that could occur.” He embraced “the melancholy of insomniac nights,” which drove him to phantom-like wanderings through the streets of Paris at all hours, as proof of a superior intellect. “True knowledge comes down to vigils in the darkness, “ he wrote. “The sum of our insomnias alone distinguishes us from the animals and from our kind. What rich or strange idea was ever the work of a sleeper?”

Joyce Carol Oates has expressed similar sentiments. Insomnia may result in anguish and discomfort, she said, yet keeping vigil at night, when one’s defenses are down and one’s rational powers are at low ebb, may also summon visions. “Unable to sleep, one suddenly grasps the profound meaning of being awake: a revelation that shades subtly into horror, or into instruction. Sartre imagines Hell as a region in which one’s eyelids have vanished–perpetual consciousness. Yet this wakefulness is also a region of profound revelations.”

“I’ve come to regard my insomnia as something very positive,” Oates said elsewhere. “I’ve written a lot of gothic and horror, and I think the insomnia allows me to tap into something that might otherwise be missing.”

How I envy people whose insomnia is a portal to revelation and difficult truths! Who doesn’t long to find a silver lining in the cloud? To discover some creative use for wakefulness would make it much more tolerable. Yet people who do that are tapping into resources I haven’t found inside myself. There is nothing remotely “grand” about the insomnia I have lived with, or, I suspect, the insomnia of those whose complaints drive a $2 billion sleeping pill industry.

The kind of insomnia that gives rise to complaints is classified in medical lingo as a “disorder,” or an abnormality of function. And while lots of people experience occasional wakefulness, fewer experience it on a continuing or recurring basis, as I do, in which case it’s said to be a “chronic” disorder.

Estimates of the number of people with chronic insomnia vary, but 10 percent is a figure often cited in print. It affects more women than men, older people more often than younger, the poor more often than the well-to-do. No test can confirm that you’ve got chronic insomnia. But you know it when you’ve got it. And if you’re reading this book, I’ll wager your insomnia is a pretty steady adversary (or perhaps it is for someone you know).

The medical definition of insomnia differs somewhat among the three systems used to classify sleep disorders. Yet these systems are mostly in agreement about the main symptoms: difficulty initiating or maintaining sleep, or non-restorative sleep, and distress or impairment in important areas of functioning. The diagnosis of chronic insomnia turns on the duration and severity of the symptoms. A separate diagnostic category exists for circadian rhythm disorders, in which the sole problem is a mismatch between the timing of daylight and darkness and the time your body clock says you’re ready for sleep. (We’ll sort out the diagnostic distinctions later.) When insomnia is a regular nighttime companion, something is functioning in a less-than-optimal way.

When I conceived of this project near the end of 2003, there weren’t many stories about insomnia circulating in the popular press. Accounts of people with other disorders–depression, bipolar disorder, anorexia, Asperger’s syndrome–were all over the TV, the movies, and magazines. But except for Sleep Demons, a memoir by Bill Hayes, and a few short stories, the only place I found insomniacs talking freely about their lives was on the web in anonymous, sound-bite-sized posts. Since 2003, a few more insomnia sufferers have come forward with their stories. Insomniac, by Gayle Greene, and Wide Awake, by Patricia Morrisroe, have helped to humanize and increase awareness about an affliction often dismissed as just a normal part of everyday life. Yet experiential accounts of insomnia remain few and far between.

Why have insomniacs kept such a low profile? In what ways has unwanted wakefulness affected their lives? How do they feel about it, what are they doing about it, what kind of help are they looking for? These questions could only be answered by some of the 30 million insomnia sufferers who remained anonymous to me. So by word of mouth and through the web, by posting fliers and advertising in the newspaper, I began to make contact with the members of my tribe.