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.

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When people have just the earliest awareness of hope in the possibility of another way, another perspective, the quantum leap from the old pattern to the new pattern instantly makes a big difference in how people perceive their situation.

If we can shift our attention and interpretation, we open up new possibilities for experiencing and healing. That is our ultimate goal here at the Chopra Center.

Human reality is shaped by patterns of what we focus on and how we interpret it. These patterns of perception are mostly habitual, because life tends to be quite conditioned. They perpetuate specific physiological shifts, and at a certain point people start to feel that there are no alternatives, that X is how it’s always going to be. That in and of itself can generate the chemistry of illness.

I think the most important thing a doctor can do - and what we do here at the Chopra center, actually - is to introduce people to the fact that there are other possibilities to consider.

We help people challenge their perceptions of the world through the use of drawings — where if you look at a drawing one way, you might see an old woman, but if you look at it a different way, you’ll see a young woman. These kinds of optical illusions are based upon shifting, causing you to see in different ways. We explain to people how by shifting perspectives, they still own the same thing, but their reality changes.

David Simon, M.D., is a board-certified neurologist and ayurvedic practioner; co-founder, CEO, and Medical Director of The Chopra Center for Wellbeing; and assistant clinical professor in the Department of Neurosciences at The University of California. Dr. Simon has authored popular wellness books including The Ten Commitments: Translating Good Intentions into Great Choices and Grow Younger, Live Longer: 10 Steps to Reverse Aging (co-authored with Deepak Chopra, M.D.). Dr. Simon is a keynote speaker for the March of Dimes, American Cancer Society, California Medical Association, Harvard Medical School, and other prestigious institutions.

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It seems that more and more chronic pain sufferers are launching blogs and doing other work as freelance writers — whether our writing directly addresses chronic pain or not. So I asked Paula Kamen for her tips on maximizing freelance writing work when disabled. Here’s what she said:

1. Ideally, do something other than writing to earn money, so you won’t burn out when it comes time to do your real writing.

2. The exception to that is corporate writing, such as doing newsletters or corporate reports, which do pay much more hourly than the more glamorous magazine writing, and with less competition. Don’t worry that you’re “selling out!” It’s a means for an end. If you’re really a socially conscious type, you can also do writing for non-profits, such as grant writing.

3. Conserve your brain energy and be picky in taking freelance assignments. Don’t write just to write. Do an article or book only if you’re really interested in it or if it will advance your career.

4. Moving at your own pace, without judgment, is the key. Don’t judge yourself as being “productive” only if you work fast. If you work slowly but steadily, you will be amazed at how much you get done in the long-term. This was my style for my third and fourth books, which I actually produced relatively quickly in the long term, although the writing felt slow at the time.

5. Do not judge yourself if you need financial help from someone like a partner or parent, or even the government. Everyone has a time in their life when they are dependent, but we often forget that. Besides, there is almost no writer who has made it totally on their own; if you peel away a layer, you usually find some covert source of help (trust fund, husband, etc.).

6. Not having to rely solely on freelance journalism has greatly reduced the stress in my life. This is true even with my third and fourth books, which have gotten much better advances. I know, from the experience of my second book (which I resold to another publisher), that books often get rejected, and then you have to give the advance back.

Until a book is officially accepted and published, I see the advance as a loan. I also have less stress knowing that I can afford to stop working on it if it starts to adversely affect my health, which is always the most important consideration.

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.

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This week was all about making progress. While I still feel far from my ideal exercise routine, I’m proud of how I worked with my limitations and increased my consistency in areas where I have slacked off in the past.

For starters, I incorporated two days of gentle dancing — one at home and one in a freestyle dance class. I was very clear with myself that the objective was not to burn calories, but rather to dance with my pain and maximize my mobility. As such, I was able to dance at my edge and avoid re-triggering that thigh/groin muscle injury.

In addition, I began slowly re-introducing biking into my life. Part of what made it possible was that I arranged with my mom to pick me up if my injury reactivated somewhere during my bike route.

Lastly, I made sure to do my hand physical therapy routine — even if it was right before I went to bed, and I was exhausted. I realized that I just had to make it a top priority, no matter what.

All in all, I’m pleased with my activities of the past week.

Sunday

Dancing with Pain® 1 hour

Hand physical therapy routine

Monday

Hand physical therapy routine

Tuesday

Swim 1/2 mile

Water walk 1/8 mile

Bike 1.5 miles

Wednesday

Gentle dancing 40 minutes

Elliptical trainer 20 minutes

Weights at gym

Thursday

Bike 3 miles

Hand physical therapy routine

Friday

Hand physical therapy routine

Saturday

Bike 6.75 miles

Hand physical therapy routine

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Loolwa Khazzoom: Why did you turn to exercise for natural pain relief?

Brad Lemley: Well I didn’t really understand why it worked; it was just kind of an intuition. I started to get my mind around it when I was reading John Sarno’s book, Mind Over Back Pain, where he talks about a real disconnect between pain and structural problems in the spine.

He came to realize that pain doesn’t occur so often as a result of a disc or a bone being out of line. It is almost always a muscular phenomenon that results from chronic tension, which is a feedback mechanism.

People feel pain, and there’s a tension that surrounds the concern — that “It’s going to get worse if I…” feeling — so they become both sedentary and chronically tightened in that muscle, which leads to a constriction of blood flow, which in turn causes pain.

Push or Pull Back?

LK: What are your thoughts on pushing past pain versus stopping when you start to feel pain?

BL: You have to listen to the signals that your body is sending you. It’s clearly a bad idea to put extra stress on a structurally flawed part of your body. You’re really running the risk of winding up paralyzed or at least injuring yourself further.

But when you talk about pain from exercise, it’s not necessarily the stabbing, shooting pain that tells you that something is wrong. It can just be the old, “Eh, this is hard, I’d like to quit” sort of pain. I think that most people have enough body intuition to be able tell the difference between the two, but of course, it’s not always easy to tell.

I think that with plain old discipline, we have a tremendous ability to go past our limitations and get into better and better shape. From my experience, if you really push yourself hard physically, you are strengthening your muscles and increasing good, strong blood flow from a strong heart. I think that is the secret of getting past pain.

Exercise Routine

LK: How do you keep that discipline, when it’s hard to stay motivated — especially when your body aches?

BL: I think it’s really important to just do a little bit at a time. Being completely sedentary, and then pushing yourself for two hours, and then being completely sedentary is not, I believe, nearly as healthy as the three sessions that work for me:

My daily exercise routine is doing 10 minutes in the morning, and then a run at noon, and then when I get home I’m usually a little bit jazzed, and I do about 5 more minutes of weightlifting to wind down.

Meditation

LK: What are your thoughts about sitting and meditating, moving energy through your body, as opposed to just going for a hike on the trail?

BL: I’ve tried various times in my life to do meditation. But my mind stays extremely active. It just doesn’t work for me. So I don’t do it. What can I say? I’d rather run. I’ve gone from stressed and crazed and feeling out of shape, to feeling strong and relaxed and focused. I never have to wonder if running makes any difference.

Role Models

BL: I might mention that my two heroes are Jack Lalanne and Dean Karnazes. Jack Lalanne is now 93 yrs old, and he is the father of fitness. He’s the guy who invented working out to stay in shape. In the ’50s — when people said it would make you muscle-bound, and you would get an enlarged heart from working out — he was on TV, working out.

All of his critics are now dead, and he is still in fabulous shape, working out two hours a day. They’ve got his old TV show from the ’50s on YouTube. He is a real hero, a guy that really had it figured out a long time ago. The fact that he’s lived so long and is so healthy now is evidence that exercising works.

Dean Karnazes is an ultra-marathon runner. He’s got the world record for the longest, continuous run of 356 miles. He says, essentially, people have no idea what the human body can do. It’s ten times more than anyone guesses.

His book, which I just read, is called Ultra Marathon Man. It’s nothing for this guy to run 48 hours without stopping. He actually has run in his sleep for brief periods of time. He’s just reinvented what the body can do.

I’m not going to go out and run 300 miles, but it’s inspiring to me, as somebody who does try to keep in good shape, to realize that it’s possible for a human being.

Brad Lemley is the editorial director of DrWeil.com, Andrew Weil’s website. Previously, Brad worked as a television reporter and anchor, a radio reporter, and a freelance writer for The Washington Post, Life, Discover, and other leading periodicals, and he co-authored two books, including It’s Not What Happens to You, It’s What You Do about It. In his spare time, Brad is a woodworker, house renovator, and dedicated fitness enthusiast.

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