Her book, All in My Head, is not only an incredibly validating read for those of us who have lived through the hell of chronic pain, but is mandatory reading for those around us. If anybody doesn’t get what you’ve gone through or what you’re going through, hit ‘em over the head with the damn book, and watch enlightenment dawn! Here Paula Kamen talks shop about writing a book on chronic daily headache.
Loolwa Khazzoom: How and why did you end up writing a book about Chronic Daily Headache?
Paula Kamen: I saw it as an amazing opportunity to learn more about Chronic Daily Headache — its causes and how to manage it. All the books I’d seen on headaches were by doctors promising relief through drugs, which didn’t work for me, or by alternative-medicine people claiming I’d get an instant cure with their method. In reality, most chronic illnesses are not curable, and people need to learn how to live with their illnesses as best they can.
Some of my book was consumer-focused — to keep patients more savvy and practitioners more accountable to not ripping off desperate patients (who will do and pay anything to get their old lives back). I also wanted to provide comfort to others like me, who felt very freakish and isolated and shamed about their problem.
While the stereotype of our culture is to blame pain and fatigue problems on the patient being “hysterical,” I saw the opposite, of such people hiding their problems and purely blaming themselves.
LK: In general, how can the struggles and triumphs of living with disability be turned into freelance writing material?
PK: We need much more writing about the daily struggles and triumphs of living with disability. Right now, we only have stories about disability or illness when the person has cured himself (Lance Armstrong winning like, twenty, Tour de Frances, after getting cancer) or killed herself (Hillary Swank character in “Million Dollar Baby,” who couldn’t stand being disabled after an accident).
Chronic illness and disability is a vastly under-addressed topic, which is now starting to finally change with some shame-lifting. In the past, people have tried to hide such problems, but now we’re in a beginning movement to see them not as moral weaknesses, but as a part of the diversity of who humans are.
Some people need to work at a slower pace, some are gay, some are black, some are tall, etc. We especially need more first-person accounts about pain and fatigue disorders, which are mainly experienced by women, and have thus been stigmatized as “all in our heads.”
LK: What did it feel like to use your Chronic Daily Headache experiences as writing material?
PK: Writing my book, All in My Head, which was part memoir, part journalism and part dark humor, was vastly rewarding. I know from the emails I’ve received that I’ve reached my main goal of letting people know they are not alone and that there is still hope, even in the worst of circumstances, to have a productive and meaningful life with the pain.
I did not offer any miracle cures, but readers were still emboldened with the message that life can go on, and be pretty good, even when a cure doesn’t happen. We need more stories out there about people sharing coping strategies and showing what fulfillment they do have, despite challenges.
We need to write about what we still can do, not just what we can’t. I also have been very rewarded seeing the parents and friends of those with Chronic Daily Headache reading the book and gaining new empathy and understanding of it.
At first, when the book came out, I admit that I felt very exposed and strange. Because it’s invisible, pain is often not hard to hide from others. And I had been “in the closet” about it for 15 years, with only close friends knowing about it. I did feel most sensitive to being exposed to colleagues, whom you want to see you strong.
The toughest moment was a review in a hometown paper, which exaggerated how dependent I had become. In our culture, being dependent is the ultimate shame – more, for example, than exposing any type of sexual proclivity.
But then I was relieved to not have the stress of hiding The Headache. When I went on the book tour for All in My Head, I could freely tell the publicist that I had to set a slow pace and have only one event a day — instead of many, like I’d done with the first two books. That made the tour much more enjoyable, and unlike before, I wasn’t a wreck when I got home.
LK: Please talk more about the ways your reality as a disabled person has become integrated with your work as a freelance writer.
PK: While I wish I never had Chronic Daily Headache, I’m now a much more reflective and empathetic person, which only is an asset for writing. I also am much pickier about what I write about, not writing just to write or even for money. (My other revenue sources take care of that.)
I know my energy is limited, so I do only what is worth that energy. That requires much focus and ability to say “no” to some projects. I’m a much better boundary-setter now!
Paula Kamen, a Chicago-based journalist, is the author of All In My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable and Only Slightly Enlightening Headache, and most recently, Finding Iris Chang (on bipolar disorder). Her website is paulakamen.com.