Head case

Almost none of the mainstream or alternative therapies Kamen has tried have worked, or at least not much and not for long. She still has her headache and, tragically, Jane Pauley's producer declined to put her on the air absent a miracle cure. But if "All in My Head" isn't the classic American narrative of How I Utterly Demolished All Obstacles in My Way, it might be something far more valuable. It's the story of learning to live now, with limitations and ambiguity and, yes, pain -- and not waiting until some future date when those things will be vanquished.

In Kamen's book, she describes her constant companion in various ways; sometimes it's like having ground glass in her eye, sometimes like having a railroad spike driven through her head, sometimes like having a barbed fishhook twanging at her optic nerve. (Yowtch.) Suffice it to say that her left eye and left temple always hurt (these days the right side can be pretty bad too), and 3 or 4 out of 10 is, as she says, "a great day." She's cheerful, funny and upbeat; she doesn't sound anything like that dreaded cultural icon, the Woman With a Headache.

This seems like such an important book to me -- it connects the dots on this issue of women and chronic pain in a way nobody else has done, and it's a remarkable personal story as well. I'm surprised that the media isn't all over you.

Well, it's still an invisible disability and there's still a lot of misunderstanding. People think it's just something silly, or something neurotic people have. William Grimes of the New York Times didn't read the book, but he did a story with the headline "We All Have Lives -- Must We All Write About Them?" It was about how there are too many memoirs, and he used mine as the prime example: I just had a headache and I'm so self-absorbed that I wrote a whole book about it. I must be an idiot.

Then there was this review in the Chicago Tribune where the critic wanted it to be more like a sex memoir. She thought I was just trying to write about an Important Issue, and that was why I did all that reporting. I really felt like that was essential. This issue is so misunderstood. If I just wrote about myself -- "I'm having a lot of pain" -- with no explanation of what chronic daily headache is, people would just think that I'm nuts. And then the issue really is about me, which I didn't want.

For a lot of people -- for a lot of women and, I predict, a lot of the men in their lives -- your "Tired Girls" chapter is going to be an epiphany. It's going to describe them, or someone they know, and connect them to this larger medical and social phenomenon. Have you heard that from people already?

I think it's just the beginning of people coming out about things like this. Someone e-mailed me the Web site of Rebecca Wells, who wrote "Secrets of the Ya-Ya Sisterhood," and she writes about having some form of chronic fatigue where she can barely lift a pen some days. Laura Hillenbrand, the bestselling author of "Seabiscuit," is now writing a book about chronic fatigue. So it's just the beginning of writing about these things that have been very, very stigmatized. It's almost the last thing to come out about: having weakness and vulnerability. It's one of the last taboos in our society.

Your book isn't one of those disease memoirs with a grand, dramatic solution. You parody that genre at one point: You're going to have a miraculous surgical procedure, marry the handsome doctor, and win the Tour de France six times. None of that happens. Basically this is the story of how you learned to live with this headache, rather than get rid of it.

Exactly. It's a lot about acceptance. It took me 15 years to accept that I had any kind of a disability, even though I obviously do. It goes against our culture so much to actually accept something. We mistakenly think that if you accept something then you're, like, dooming yourself. You're resigning and totally giving up. It's actually the opposite. In accepting it more, I can now live around it better. I can schedule things more efficiently and not cancel on people, the way I did when I was in denial about it. Acceptance of pain, in the last hundred years or so, has been discouraged by a lot of medicine. Pain has been considered fundamentally a psychological thing -- if you accepted it, that meant you were mentally attaching yourself to it.

Right. There's the Freudian concept, which you write about, that people with persistent or chronic pain are getting some kind of "secondary gain" from having it.

Exactly. It's so amazing that in 2005 that's still out there. That legacy of Freud, especially with chronic headache pain, has really lingered. I could go off on many tangents here: It's mainly experienced by women, it's literally in the head, where the mind is, and female hormones, which are known as the "crazy chemical," sometimes make it worse.

Let's talk about the gender issue, which is maybe the $64,000 question here. You go at this very directly in your book. People are going to have the reaction, whether they admit it or not, that this whole question of chronic pain and fatigue is a chick thing. It's a women's issue, shrouded in mystery and superstition. And you're saying, well, it's time to face that there's some truth to this stereotype.

Right. For this reason, I had a little hesitation in writing about this. But not much. One of the main justifications for excluding women from society has been that they're neurologically weaker, that they're "hysterical" and suffer more pain. Historically, that's how women were portrayed. Now, in recognizing the reality that women do get more pain and fatigue, it might sound like I'm anti-feminist. Actually, it's the opposite.

The time now seems to be right for us to be secure enough to talk about this. The women's movement has proven itself; we're strong and confident, we're in the workplace and the WNBA. It's also important to recognize that we're fully human. We're not superwomen. This generation believes that we're entitled to equal rights even if we're not perfect. It was a more delicate time in the '70s, and the job of the women's movement was to say, "No, we're not weak! We can be athletes! We can beat Bobby Riggs in tennis and run marathons and become astronauts! The body is truth!" That was an important mission, and now, with the third wave of feminism -- which I've written about since its beginnings in the early '90s -- we're recognizing a lot of issues we couldn't talk about as easily before.

Anyway, it's irrational for people to use this against women, this argument about us having more pain and fatigue, because men, neurologically speaking, have their own share of stuff. They're much more likely to have personality disorders, to have schizophrenia.

We have a pronounced tendency to kill people, don't we? That's posed something of a problem over the years.

That's true. So if you took that same logic -- that women have more pain, so they shouldn't be allowed to vote -- you might want to lock every man up as a preemptive strike. You wouldn't allow them even to enter a workplace, because of the risk that they'll go on a shooting rampage.

More seriously, the larger point is that everybody's different and there's huge variation. Not every woman has pain and fatigue, and not every man is a serial killer. [Laughter.] But we're defensive about it because of this history of it being used against us.

Next Page: After visiting more than 100 health practitioners there was still no relief...

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