SLEEPSTARVED.ORG

On New Year’s Eve, home from a party, around 3 AM, I happened onto a blog on a New York Times Nov. 7 article, “Curing Insomnia Without the Pills.”

http://well.blogs.nytimes.com/2007/11/05/curing-insomnia-without-the-pills/

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.

A few months after I came upon Tara Parker-Pope’s blog, March 21, my book Insomniac got featured on that same blog , “The Wretched Life of the Insomniac,” “Writer Gayle Greene’s new book, Insomniac, from the University of California Press, is both memoir and investigation into the world of insomnia.…. ”??http://well.blogs.nytimes.com/2008/03/21/the-wretched-life-of-the-insomniac/

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.