Head case

Let's talk about the things that actually helped you, that had enduring benefits. A lot of those were really simple and commonsensical, right?

The most important thing for me now is exercise. Something free and simple! I get massage and acupuncture sometimes. It doesn't always do much, but it sometimes takes the edge off. And then, like, the most basic things: cold compresses, heating pads. I have this one heating pad that draws moisture out of the air, it's like the Cadillac of heating pads. An elastic band around the head.

You also found aromatherapy very helpful, right? Specifically the combination of lavender and peppermint oils.

It's absolutely incredible. At the cost of $50,000 and 12 years of my life, but it was probably worth it. Yeah, I always carry it with me. It has to be a high grade of oil, I didn't realize that in the beginning.

I had to put the book down and run into the other room to tell my wife about that. She goes everywhere with a little vial of essential oils.

There have been studies suggesting that it might go right to the limbic part of the brain, especially in women. It's great in the bathtub, I immerse myself in it constantly -- but the main thing is applying it right to the temple. I do that compulsively.

And just about the only medication you take at this point is pseudoephedrine, your basic over-the-counter sinus decongestant, right?

Right. It's like caffeine in that it's a good short-term solution that sort of calms things down. But it loses its effectiveness if I take it more than twice a week. I don't allow myself to take any pain medication more than twice a week, total.

So the triptan drugs that have helped so many people with migraines, like my wife? Drugs like Zomig or Imitrex, those do nothing for you?

Right. That's why doctors are researching chronic daily headache at last. A lot of migraine people have really been helped by those drugs, and people like me are left in a different category.

So these days you take no prescription medications at all.

No. I've made a choice to be lucid and in pain all the time. Usually I'll take Tylenol Sinus twice a week -- acetaminophen and pseudoephedrine. That's it.

Of course I should say that everybody's different. I use lavender oil and that might not do a thing for someone else. Some drug I hated might be the cure-all for another person. Everybody has to go through their own journey. But the thing I really learned from alternative medicine was to be aware of my own body -- what makes it worse, what makes it better.

What was the single craziest or dumbest thing you tried?

[Laughter.] It's so hard to narrow that down. The surgery was clearly the worst, but it was also inevitable. If I hadn't had it, I would have wondered the whole time if that would have done it. That and Xanax, definitely, were the disasters. In terms of alternative medicine? I don't know, there was just so much.

You did have a guy pour fig tea in your eyeball. May I just say that?

[Extended laughter.] Alternative medicine, unlike Western medicine, didn't harm me physically. It was more a case of the "mind-wallet connection," lots and lots of money. You know, you see somebody for 12 visits at $50 a pop, and it starts to add up. Then there was the vibrating hat I bought off a TV infomercial.

That was good too. This book is often very funny, even though it's about someone who's in pain almost the whole time. Did you have any hesitation in approaching it that way?

None at all. I started out wanting to be a comedy writer. The feminist stuff just sort of happened accidentally. It was always my main interest, and I didn't have to impose it here because it was inherent in the situation. There's such absurdity in having a disability that people can't see and don't believe is a disability, in going to all these doctors who are overpromising, the desperation that leads you to do anything, no matter how illogical, if it might get rid of the pain. The humor was also a coping mechanism too. Irony, for better or worse, is a distancing tool. When you get into the worst situations with this disability, and you're embroiled in it with no external perspective, a sense of humor is really helpful.

At a certain point you began to make contact with other people who had chronic pain, in some cases as bad as or worse than yours. That obviously changed your perspective.

I was sorry to see all this suffering that takes place in secret in people's lives. But it was extremely validating to see some of the same exact paths that I had taken. I thought I was a total freak in even having it, and then to meet people who had taken the same drugs and pursued the same therapies was amazing. You can become less self-absorbed when you see that, you can begin to see the bigger picture.

What's the one thing you would tell someone who's suffering from chronic pain, maybe in secret, and doesn't know what to do or where to turn?

That's a good question. It's like dating; you can't be totally desperate, because then you're likely to make bad choices. You have to make peace with it and accept it, and believe that you can go on with it. That makes you less vulnerable to charlatans and to invasive and dangerous procedures. And you have to live your life in the meantime. For years I always thought I would start living life after I was cured.

It's a balance; I'm not saying give up on getting relief. I'm still trying, definitely. But just see that a lot of life is lived with uncertainty and ambivalence. Having no pain doesn't always equal happiness, and having pain doesn't always equal sadness. A lot of disabled people come to realize that you can be happy and in pain at the same time. All of this is easier said than done! But don't put everything in your life on hold. It takes time to learn management techniques, and there will be inevitable chaos. It's not easy.

Are you at peace with the possibility that your pain might never really be cured?

I'm not totally at peace with it, but a lot more so. The odds are that I'll have this the rest of my life. The more research I've done, the more I see that pain that's constant, and that's gone on for years, sort of becomes programmed into the brain. There is a chance for, like, the Prozac of chronic daily headache to be invented. I do have some hope that there's going to be a drug someday that hits exactly the right neurotransmitter. But I have accepted that I can go on. There's a lot I can do, even in the worst-case scenario. There is the fear that it could get worse, and I'll deal with that if it happens. But the way it is now, I've figured out how to live with it. It's taken me a lot to get to this point.

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