Experts tell us to get out of bed, go to another room, and do something else. But it’s depressing to out of bed in the middle of the night, and not all of us have a comfy extra room to go to. Besides, if I get up and start doing anything, if I even turn on a light, it wakes me up more and destroys all chances of getting back to sleep. But the experts are right, lying in the dark listening to the sound of your wheels spinning is no good, either. I may wake up without a thing on my mind, but if I lie there long enough, my mind will find something, and at that hour, it’s not likely to be good.

So I reach for my walkman and earphones and put on a book on tape (and I do mean tape, not CD or iPod, which are useless for this kind of listening). Just knowing there’s a novel or memoir to listen to makes the waking less grim. Some of these books are so marvelously performed that they become like a theater in my head. Worlds open up, scenes play themselves out, and since my day job is teaching literature, it’s a way of keeping up. But more than useful, it’s a pleasure, and sometimes even a way of getting back to sleep.
Listening to books may work as well those punishing measures sleep experts advise. Research suggests it does. One study instructed subjects who couldn’t fall back asleep after 10 minutes to sit up in bed and read or listen to the radio or watch television. It found that their sleep was significantly improved after four weeks and remained better a year later—and they didn’t have to get out of bed. The key was, they got their minds off their own thoughts. I prefer listening to reading because it lets me stay under the covers, warm, snug, and in the dark, which keeps the melatonin and other restful hormones flowing.

But it’s not easy to find a book that’s good for sleep. It takes just the right kind of story, interesting enough to engage the mind but not so interesting that I need to stay awake to see how it comes out. No pageturners or cliffhangers, nothing too exciting (Seabiscuit got transferred to the car). Nothing with violence or physical awfulness. But it can’t be boring, or my mind slips back to my own story. The reader must have a soothing voice and not rush through. And no shouts or songs or that dumb mood-setting music—that startles me awake. Those tapes get moved to the car, or ditched, if the music’s obnoxious enough.

Novelists who work especially well for me are Jane Austen, Anita Brookner, Penelope Lively, Ian McEwan. Memoirs work beautifully because they’re not plot-driven: Nuala O’Faolain’s Are You Somebody? Russell Baker’s Growing Up, Alexandra Fuller’s Don’t Let’s Go to the Dogs Tonight. The language is interesting, the characters are engaging, and if I fall asleep and miss a scene, I just wind the tape back the next night and find where I left (which is why tapes are better than the new technologies). If the writing is good, I’m happy to listen again.

I get to know some of these books quite well, though in a lopsided sort of way: the first part of a tape, I hear over and over; the last part, I may never hear at all. My friend Carol Neely listens to books to sleep by, too, and we’ve talked about writing blurbs: “this book is great for putting you to sleep.” It doesn’t sound like a compliment, but it is. It means the book is sufficiently interesting moment to moment to keep the mind engaged, so you’re not hanging on to find out what comes next. Carol loves biographies, Doris Kearns Goodwin’s Franklin and Eleanor and David McCullough’s Truman— “they go on forever,” she says, “they’re well written and interesting and you know how it turns out, so there’s no suspense.” But there are so many different kinds of things recorded— histories, romances, inspirational— that there’s something for everyone.

Eric Zorn, columnist for the Chicago Tribune, uses cassette recordings of talk-radio programs to fall asleep to. “I find those meditation thingys very distracting—‘think of a peaceful beach…’—and too much work. Try something that truly takes your mind away, like a big screaming match on immigration or abortion or gun control.” He says, “I try to pay attention the conversation, follow it carefully, engage in the topic. The next thing I know it’s morning and I am rested and refreshed.” A respondent to Zorn says, “Nature programs work, too. I have a tape about backyard birdwatching that I’ve never seen more than five minutes of.” One man swears by the Golf Channel. Not me: I need a story.

I’ve scandalized purists, defending listening like this—an English professor, letting down the cause of reading! But I’m not letting it down. Western literature began as an aural form, with Homer reciting The Iliad. Shakespeare’s plays were written for the stage, not the page— most of his audience didn’t even know how to read. Surely it’s the prejudice of a print-bound culture to imagine that reading is superior, when aural forms have this long and illustrious tradition, and the sounds and rhythms of words have a far more elemental power than print on a page.

“There’s not a parent who doesn’t know the value of a good snoozy story to help lull the little ones to sleep (or make that cranky transition a little easier),” writes a New York Times reviewer of children’s books. It’s a primal pleasure, being read to—it evokes what Anne Lamott calls “the listening child.” I’m hooked—and it’s a technique for coping with insomnia that I can recommend unequivocally. It can’t hurt you, unless you blunder onto a page-turner and lie awake all night to find out who dunnit; then you’ll curse me. Otherwise, it’s harmless; no side effects.

Let other people be bookworms, I’ll be a tapeworm. (I wish I could claim that line, but it’s David Sedaris’. Can’t tell you where he said it, though—I heard it on tape.)

I’ve had insomnia as long as I can remember. I remember my parents trying to wrestle me to bed at what they called a “normal” hour, meaning any time before 1 A.M. “But I can’t sleep!” I’d wail. “Nonsense,” said my father, “of course you can sleep. “Everyone knows how to sleep. It’ s the most natural thing in the world—just close your eyes and relax, you’ll get sleepy. If only you’d listen to your mother and go to bed earlier. If only you wouldn’t get so wound up.” So it was something I was doing wrong, some obstinance of mine that I could change if I would.

My father was a normal sleeper and to the normal sleeper, sleep is “the most natural thing in the world.” He was a doctor, an old-style family practitioner who carried a black bag and delivered babies at home, one of a heroic vanished breed—but that didn’t mean he knew a thing about sleep. Sleep was no part of the curriculum when he was in medical school; it is barely a part of medical school curricula today, when doctors get as little as an hour or two instruction in sleep or sleep disorders. So the advice I hear from doctors these days is a lot like the advice I used to hear from him. “Just lie there and relax,” “don’t worry,” “go to bed earlier.”

What I mainly hear is that insomnia is a psychological problem, that it’s caused by worry, stress, depression, anxiety, some kind of neurosis or psychopathology. When I protest that I’m not particularly depressed or anxious, except about my sleep, that my lifestyle’s no more stressful than that of people I know who sleep fine, I’m offered an antidepressant. When I say, I think it’s hormones, doctors aren’t interested in my hormones. It was as though they already know, they’ve made up their mind, that it’s a psychological problem, something I could change if I’d change my attitude or ways. I then get told to avoid caffeine and alcohol, get more exercise, take a hot bath, warm milk, sleep in a dark, quiet room.

So I decided to find out what is going on, that I’m still hearing the same advice I heard fifty years ago. I started talking to the researchers, to find out about the state of the science, and talking to the people who live with the condition, to find out what they know. I think that people who live with conditions have inside information about these condition. We live in our bodies. Women have always known that hormones affect sleep, that insomnia is worse at certain times in the monthly and life cycle, though it took researchers till the late nineties to catch up to this realization. If someone had asked us, they might have figured it out much sooner.

I wanted to hear what insomniacs have to say, their hunches about how they came by insomnia, what they’ve found that works. I tracked down everyone I’ve ever heard of or known who has insomnia, friends, friends of friends, relatives of friends, acquaintances, colleagues, students. I placed ads, I spent late night hours on the Web, surfing message boards, blogs, newsgroups. And I learned that, sure enough, insomniacs have fascinating ideas about where the problem came from, and wonderfully imaginative ways of dealing with it.

I started going to the sleep meetings. Yes, there are such things, and they’re a big deal—more than 5000 people attend the annual Association of Professional Sleep Societies, where scientists, physicians, psychotherapists, nurses, geriatricians, social workers, epidemiologists, sleep technicians, drug company representatives, gather from around the world to share the latest in research and treatments. At these meetings I learned how little is actually known about insomnia—and how little is known about sleep, for that matter. I realized that insomnia can’t be written off as a psychological problem, when so little is known about it, and when so much about sleep behavior—how much sleep we need, whether we’re morning or night people—is inborn and genetic.

I wrote the kind of book I wish I’d had all these years dealing with insomnia, a guide through this territory that normal sleepers barely know exists. Insomniac is not a self-help book, but a self-enabling book, says an Amazon reader. I don’t offer a “program” but I do describe things people find helpful, ways they might think about their problem and approaches they might try, a potpourri of methods and approaches gleaned from living with the condition and talking to others who live with it, not listening to “experts” who’ve never had a sleepless night.

Some of what the experts tell us is very true and important, like being careful about caffeine and alcohol. But nobody can tell you “the sure rules to sound sleep.” You have to find out for yourself what works for you. Experts say, don’t read in bed or watch an exciting DVD close to bedtime. In fact, many insomniacs find that reading in bed helps them sleep—and I find that a DVD helps. And the more dramatic and vivid it is, the more likely it is to send me to sleep with visions of other places, other lives, dancing through my head—and all the more likely it is to help me sleep. (Nothing violent or too depressing, of course.)

There are many routes to insomnia and many routes away from it, ways as individual and idiosyncratic as we ourselves are. Different strokes for different folks. That goes for meds, too. Don’t assume that the first drug your doctor offers you is going to do the trick. I’ve learned about managing sleep medications through a long, painful process of trial and error. What I write about meds may spare others that pain.

You have to find your own way. Do your own research. Read widely, my book and other books and what’s on the web—find out what works for other people, learn all you can. Try things out, then cobble together something that works for you. There are no one size fits all solutions. There is only what you can find that works.

And communicate. Come out of the closet. Let people know—friends, families, employers—that this is a serious problem, seriously disabling, that it’s not going to go away with a hot bath or warm milk.

“Maybe sometime in the future, around the year 2000, say” wrote Douglas Colligan in Creative Insomnia, in 1978, “we’ll have toll free hotline number 800 NO-SLEEP for the National Information Network of Insomniacs Anonymous. It’s a brutal fact of life that while people who are victims of everything from schizophrenia to hay fever have some group to turn to for help, the insomniac has to rough it alone.” I wonder, if Heath Ledger had had such a hotline, might he have reached for the phone instead of for another drug…

But the year 2000 is long past, and no hotline exists. Insomniacs still have no patient-organized advocacy groups to put pressure for more research, no support groups other than a few on-line chatrooms. There are national organizations for sleep disorders that are far rarer than insomnia—narcolepsy, apnea, and restless leg syndrome—and for just about any other problem you can name, but there are no patient-organized groups for insomnia.

Have we been so talked out of our experience, so shamed out of it, that we’re not sufficiently on our own side to organize on our own behalf? Maybe it’s time we find our voices.

599 people had responded to this article, which was one of those well-intentioned articles, “you can sleep without pills, just follow the simple rules,” and I sat there riveted, read through all 599 postings. There was no heat in the room where the internet connection is, I was freezing, bundled up sweaters and coats, and I sat there until 5 AM, reading every single posting. I was amused to come upon the comment, somewhere in the 400s, that if you’ve read this far, you know you’re a real insomniac. Yup!

There were so many voices on this blog that could have been me talking/writing. Here are a few:

I have tried these B-mod techniques, and they are probably good for someone with garden variety insomnia, but not for true sufferers. And it is hard to listen to all this light chatter… and once again have the blame cast on my behaviour problems. It just ain’t so. …

So please ease up on the cheery light approach to a very real, and disabling problem. One size does not fit all.

Great advice and easy to follow if you happen to live in an enclosed contemplative monastery. Any advice for the rest of us?

As a person who suffered for many years and consistently tried all of the “behavioral techniques” listed, I can’t even begin to express how annoying advice from people who don’t really understand the problem can be.

While I wouldn’t ignore the sleep hygiene advice, it is not an adequate answer for most of us. Just once I’d like to hear an honest “There isn’t much we can do.”

the article trivialized the pain, suffering, and potentially lethal consequences created by severe and chronic insomnia.

Don’t tell me to go see any more doctors who can’t get their heads out of the clouds because they think they know what it is I go through… Try and understand what it is a real insomniac goes through and let everyone you know that for people like me…we don’t care if Ambien is addictive… For us it is a small miracle that gives our lives normalcy.

I was amazed to hear so many people saying exactly what I said in the book—or maybe not so amazed, since if I hadn’t thought there were lots of us, I wouldn’t have spent six years writing Insomniac. I was heartened to hear so many sticking up for themselves, saying, enough is enough, we don’t want that same-old advice. To be fair, there were other voices, who said that behavioral modification did work— one guy who’d been to boot camp said he learned there that “it works.” And it does work for some—how many, and what kind of people, and what kind of insomnia they have, nobody knows.

I was also interested to see how many people said they’ve lived with insomnia all their life, had it since childhood—and yet childhood onset insomnia is said to be rare.

I’m always moved, when I read through postings from insomniacs, to see what people live with, how they manage. And also intrigued to find the things they come up with, ways they find of living with it. I recommend this blog—it’s good reading.

I have learned more about sleep from this lively discussion by many obviously experienced and knowledgeable readers then I would have had I gone to a sleep clinic.

I’ll keep this site—will not feel alone with my problem again” wrote a 74 year old woman, four hundredth something.

I got to leave the 600th posting, on the cusp of the new year, and to say Happy New Year.

And P.S., at the party I’d just come home from, I’d consumed nearly a bottle of champagne and several rich desserts. I then stayed up way too late, staring into a computer screen till nearly dawn, and with all that booze and sugar coursing through my system, violating every rule in the book, I dropped off and slept six straight hours, without a pill, something I manage maybe a half dozen times a year. Go figure. Of course, it might as easily have flipped the other way. I guess in a way that’s not very helpful, I’m sort of fatalistic about my sleep. Sometimes the sleep fairy visits, mostly she does not.

I wish Parker-Pope had called this blog something other than “The Wretched Life of the Insomniac,” since that title is so untrue to the spirit or content of my book. It makes it sound like one long moan, when in fact I say clearly that I’m one of the lucky ones, someone who has the good fortune of being able to structure my own work hours and who sleeps better than many of the people I interviewed for the book. Besides, INSOMNIAC is not just about me. It’s about millions of people who have worse insomnia than I do, who are caught in a 9 to 5 world and impossible schedules, trying to get kids off to school. it’s about trying to understand the problem from scientific and medical points of view, about learning ways of living with it, about getting insomnia taken more seriously. It is NOT about my wretched life because I don’t actually have a wretched life.

Anyway, there were some great comments left on this blog, such as,

I wish the medical establishment would do more to really address this and stop just doling out pills or advice I tried 15 or 20 years ago that did not make a dent in this. I believe this is as much a chemical imbalance as serotonin problems, and wish medical research would get to work on some real solution to this.

But the discussion got massively derailed by “Jack,” who, in comment #2, pointed to the glass of wine in my author photo as evidence that I hadn’t made all the necessary lifestyle changes (actually, since May I don’t even drink wine—not that it’s made any difference to my sleep). And Jack kept coming back, like a bad burp, accusing us insomniacs of wanting a quick fix, of whining, of choosing to suffer and enjoying our victim status.

I’ve met a lot of people like Jack. In my book I write about the negative stereotypes insomniacs so often come up against, from doctors, colleagues, friends, even family. Even in the scientific literature, I found insomniacs caricatured as neurotic, whining snivelers, chronic complainers. And along comes Jack, like Exhibit A, to make my point.

People in the rest of the blog called him a jerk, said he was just looking for attention, had self-esteem problems.

Jack, what is your problem? Have you never heard, “If you don’t want to help, at least don’t get in the way of those who do?” All you are doing is parading your own ignorance and tacky disposition.

Have you considered that seeking out a blog like this, just to comment that other posters are whiners, is also a form of whining?

Then other people came to his defense. Jack, in fact, provoked a lot more comments and got a lot a lot more attention than I did. His ideas, if you could call them that, were referred to again and again; mine got lost in the shuffle.

It was painful to see my book, which took me six years to research and write, get lost like this, and Jack, who hasn’t a clue what he’s talking about, get taken that seriously, making the discussion fizzle and dribble away. Why is it so hard to get on with the work we need to do? — to get people to recognize insomnia as a serious problem, seriously neglected, underresearched and underfunded.

Julie Deardorf, “Did insomnia kill Heath Ledger?” Chicago Tribune, Feb. 6, 2008
Insomnia medications were reportedly part of the prescription drug cocktail that killed Health Ledger, yet for some reason we still don’t take these drugs seriously.
Read more…

What outcome can we hope for, from his tragic death? Tighter FDA restrictions? More education and caution on the part of people who take sleeping pills? Better kinds of sleeping pills?

Mark Loftin, “Heath Ledger and Personal Responsibility,” American Thinker, Feb. 9, 2008
“The idea that Ledger himself may be culpable for his death eludes the left. It’s easier to blame the US healthcare system….”
Read more…

“For others who are unwittingly using dangerous combinations of sleeping pills and anti-anxiety drugs that were never intended to be taken together, perhaps Ledger’s death will prompt them to wake up - so to speak.”
Sarah Britten, “Heath Ledger played Russian Roulette with prescription drugs,” The Times, Johannesburg, Gauteng, South Africa
Read more…

Insomniacs are said to be “emotionally seclusive and socially withdrawn,” “mentally and physically inactive, uncomfortable, sleepy, indifferent, not enjoying themselves, and depressed.” They appear to be a “distressed, pessimistic, worried group who face the world with apprehension, anxiety, and self-deprecation.” They have “greater difficulty in interpersonal relationships,” “impaired social skills or negative social attitudes.” Since they have a tendency to deny psychological problems, “essentially considering sleeplessness to be the entire problem,” they have a “strong resistance to the physician’s exploration of problem areas; a need for control, as expressed in manipulation of medications and lack of compliance with general measures.” Even when they deny that they’re depressed and insist that sleeplessness is “the entire problem,” they are depressed. –Insomniac

I am really very tired of being told what it’s like to live in my body by people who haven’t a clue.–Insomniac

Childhood onset insomnia is said to be rare, but a lot of people talk of their insomnia as going back forever.

Adolescent onset insomnia is also said to be “rare.” And yet many people trace their insomnia to this time.

Researchers tells us that most insomnia is brought on by a stressful event or event which then settles in and becomes conditioned. Has this been your experience?

Do you think it’s related to childhood stress or trauma?

Does it run in your family?

Is it related to your hormonal fluctuations?

Is it related to the work you do? Job and money insecurities?

Do you have other health conditions—such as autoimmune or gastric or low blood sugar –you think are related to insomnia? (other than obvious things that would keep anyone awake, like pain—I mean, subtler connections between something going on in your body and sleep disturbance)?

Head injuries?

Are the people in your life, family, workplace, supportive about this problem?
Experiences in the workplace?

Do you think it’s bad thoughts that keep you awake, or biochemistry?

Dreams: good dreams, bad dreams, dreams that seem to wake you up?
Do you think you have more dreams than people you know who sleep well?

Do insomniacs have access to in-between states that good sleepers miss?

What therapies would you like to see discussed or developed?
What questions would you like to see research address?
What insights or experiences with insomnia would you like the world to know about?

Some of us work out happy relationships with a particular drug, find a drug or a combination of drugs that works and keeps on working.

All sleep medications affect the sleep cycles; none gives “natural” sleep. All have next-day effects on memory and coordination. Some leave hangovers; some accumulate in the system, making the person become permanently drowsy; some are addictive.

Memory and coordination are the best documented side effects of the benzodiazepines. But there are others that are less well documented.

Ambien—though it works for me, as long as I keep the dose low and take it mainly in the last part of the night—has been associated with some pretty bizarre behavior, like sleepeating and sleepdriving.

I have a sense that the benzos and non-benzos and even Benedryl affect my vision the next day. When I’ve been in bright sunlight, then come in out of the sun, after doing something that speeds my heart and metabolism, like swimming or climbing the four flights to my office, I see a weird wavy effect off to the edge of my vision. It only happens after I’ve taken a sleep med. It’s hard to describe, something like the shadow a ceiling fan might cast against a fluorescent light; it strobes with my pulse. My vision is worsening alarmingly. I have a retinal wrinkle that puckers the visual field of my right eye so there are no straight lines on that side of the world. There’s also a “pseudo hole” in that retina that I’ve been told, grotesquely, to “keep an eye on”; and I do actually see it –on days after I’ve taken a sleep med— like a small, opaque contact lens that’s wandered off course, making a greenish dead spot; sometimes it zigzags across my line of vision.

Does anybody have anything like the effect I describe with vision?
Nobody knows what sleep medications do long-term because they haven’t been studied long-term.
–your sense of long-term effects on you?

Xyrem. Has anybody found this works for insomnia?

What I wrote about it:
After I was up an hour or so, came this amazing clarity. I felt so alert I hardly recognized the condition: I had a day writing unlike any I could remember, when the words, the ideas, the images just came pouring out, and the energy lasted well into the night (too well, in fact—it didn’t turn off). I had a mind not stumbling and sluggish and forgetful of what I was thinking the second before, but clear, searching, focused. I think the initial grogginess may have come from having slept so deeply: my body was in a state of shock from so unusual an experience. I now take it once, twice, at most three times a week, and not every day is like that first, but many days are. There are other things I like about it: it always works, unlike the benzos and non-benzos, which occasionally don’t grab hold, which leaves me facing the day both sleep-deprived and drugged. And it seems sometimes to leave me less hungry.

When I wrote that, I was more enthusiastic about this drug than I am now. I take it hardly at all anymore. The last stretch of the book, I was on leave of absence from teaching, I was staying at home, writing. Xyrem gave me a kind of sleep that gave me terrific concentration. But it doesn’t work so well when I have to respond to a lot of things coming at me—as on a day teaching. I also don’t like the way I look after I take it—pale and puffy (I’m having more problems with salt than I did a year ago) And it’s not working as well. If I upped the dose, it might, but I’d rather not. ( I only ever took 3.5 g, in the second part of the night.) I do still take it occasionally on days I get to stay home and write, but for everyday use, I’m back to Ambien. (No, I’m not on the take from Sanofi-Aventis.)

I don’t know how many insomniacs feel as I do about their experiences with clinics, but I come across quite a few people who say they’d hoped to learn more about their problem but they hadn’t got anything by way of advice or medication that they couldn’t have got elsewhere, for a lot less money.

What I wanted was the research, to learn about my hormone levels. They don’t even look at hormones. There was a lot of borderline psychobabble and new age talk, make yourself comfortable, turn the lights off. I got told about sleep hygiene, told to get more exercise.

My doc said he’d refer me to a clinic if I wanted, but he said nobody he’d ever referred had got much out of them.

Were you helped by your experience with a sleep clinic?