Paula Kamen wrote the book on chronic migraine. She talks with activist Jenni Grover Prokopy about her experience.
In 2005, Paula Kamen published All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache. In this passionate memoir, black comedy, and journalistic report on chronic pain in America, Paula shared her personal experience and her frustration at how women in pain are frequently marginalized by the health care system. That same year, writer Jenni Grover Prokopy launched her website ChronicBabe.com to help other women like her with chronic pain and illness—and read Paula’s book cover to cover. A couple of gushing fan letters later, the two had become friends. Today they talk about the lasting impact of Paula’s work:
Paula: As I began All in My Head, I was never more motivated in my life to write a book. I’ve always said you have to be just dying to have the answer to a particular question if you’re going to write a book, because it’s a grueling process. At that time, I needed the answers to some basic questions: Was I alone with this kind of pain? And: Was there something that could help?
Jenni: I remember thinking, I don’t know how she had the energy to write this book with all the pain she’s in.
Paula: It’s true that sometimes the last thing I wanted to do with my precious spare energy was spend even more time researching migraine—but at the same time, the writing process forced me to speak to more people and to read more research.
And by the time I was writing the book, I had lived with the migraine for 12 years and had reached a level of acceptance that made it easier to write the book.
Jenni: You were the first person I encountered on my own pain journey who talked about acceptance, and it had a huge impact on my work—I had never considered that acceptance could be so freeing!
Paula: For years, I thought acceptance meant that you were giving in or giving up, so I would deny that I had the migraine—and then I’d face all these additional obstacles and get very frustrated. For a long time, I spent 100 percent of my energy looking for a cure, and they all failed, and I would get depressed. But it turns out that acceptance releases you from that; it’s the opposite of being defeated. It’s ironic that you have to accept the pain to move past it.
You can then cultivate a view with one eye looking toward what treatment is next, and have the other eye on your life here, grounded in the present. Learning to do that is a continual process.
Jenni: Another thing about your book that surprised me at the time was the ending. Instead of having a “happy” ending—like “I found the magic pill and I was cured!” or “I still have pain but I didn’t care at all and life was perfect!”—it had the most down-to-earth conclusion: That you still had the headache, that you were still searching for things that would help, but that you were also happy with your life. It gave me a lot of hope.
Paula: The ending surprised a lot of publishers, who were confused because it’s a very atypical ending—it created some obstacles to getting published. The ending directly challenges the American narrative that you can solve anything if you just work hard enough.
Jenni: I get a lot of pushback from people who think I haven’t tried hard enough to fix myself. They’ll say I wasn’t perfect about dietary changes I tried, or I didn’t meditate long enough, or…
Paula: Yes! There are wonderful mind-body approaches that help pain, but some people take it too far, trying to tell us we can cure ourselves if we want to by simply using our minds. As though if we just had a better attitude we could fix anything.
Jenni: Since your book came out, your life has changed a lot: You got married, you have two young sons—and you still have your headache, right?
Paula: Yes. Four percent of the population has chronic daily headache, meaning at least 15 days a month for at least four hours at a time. One half of one percent of the population is like me and their headache never goes away. There are actually many more of us than you would think! There’s so little funding for migraine research; it’s been about 25 years since we had a big breakthrough in treatment. Our community really needs something new.
It’s frustrating—people are in pain and need help. There’s not much I can do to alleviate their pain, but if I can help alleviate their guilt, self-blame, and shame through my book, then I can easily say it’s the most meaningful work I’ve ever done.
Paula Kamen, who has had chronic migraine for 26 years, is the author of four books (including All in My Head) and three produced plays, and her work has appeared in numerous anthologies. She has been a guest blogger for the New York Times (writing about migraine: migraine.blogs.nytimes.com/author/paula-kamen) and has been published in many other media outlets. Her work is routinely called “brutally honest.” She lives with her husband, Dave, and their two sons in Evanston, Ill. Learn more: PaulaKamen.com. Twitter: @paulakamen.
Jenni Grover Prokopy is founder of ChronicBabe.com, a website for women who want to craft incredible lives beyond chronic pain and illness. She is a writer, activist, professional speaker, and advocate for the U.S. Pain Foundation—and she’s a long-time fan of Paula’s work.