sasha_feather: kid from movie pitch black (pitch black)
[personal profile] sasha_feather
All in My Head: An Epic Quest to Cure an unrelenting, totally unreasonable, and only slightly enlightening headache a memoir, by Paula Kamen

This book was recommended to me by several people and I enjoyed it a lot. It's smart, funny, well-researched, and speaks a lot to my own experience with chronic pain. I thought while reading it, huh, I would have never read this book if not for my own status as a person with chronic pain, and that's sort of a shame, that a book like this doesn't have a wider audience, because it's simply good. And it's a shame too that a lot of people, including me, know little to nothing about chronic pain until it happens to them. Kamen is a journalist and her book is a good mix of feminism, science journalism, humor, and memoir. I bookmarked a lot of pages that particularly resonated with me.

One part of the book, early on, really bugged me. From pages 36 to 42 Kamen talks about gaining weight as a side effect of pain meds, which is a common side effect that patients are often not warned about. On page 37 she seems to make fun of people with eating disorders:

Sadly for me, my parents, who grew up in poverty with immigrant families, weren't "high class" enough to promote an eating disorder; they considered someone who left good food on the plate to be morally bereft.

I nearly turned on the author at this point. She's a feminist and writes about third-wave feminism. After this sentence she goes on a rant about how it's hard to buy clothes when you're fat; this rant lasts for 3 pages. There were so many things that bothered me that I just had to skim and wait for that section to be over, and not think about it too much.

I mean, throughout the rest of the book she is so thoughtful and well-researched. Forgive me for wanting a more elevated discourse than this.

Also I am rage-filled lately and tend to stew about things. Maybe other people would not be as bothered by this as me.

Moving on to things I liked:

*Quoting Dr. Frank Vertosick, p. 52: "There is something devilish about pain arising in the face and head. They strike us at the geometric center of our beings."

*The general absurdity of trying various doctors and alternative medicines, one after the other.

*The Problem of Illness as Metaphor

*Tying together Chronic pain/illness and feminism in a very clear and important way. She criticizes 2nd wave feminism for failing to advocate for women who are chronically ill, because it was important to the movement to portray women as just as strong as men. She points out that men are more prone to certain diseases and maladies too, but that is not used to keep them out of public life or to paint them as inferior (p.176).

*Criticizing Oliver Sacks (p.107)

*Emphasizing spirituality as a basic survival mechanism for those with chronic pain. Learn to let go in order to gain control. Learn mindfulness. Practice meditation.

*Kamen gives a few mentions towards the disability movement, but not as much as I would have thought. It was curious to me how long it took her to accept the label given that she even applied for disability benefits from the government at one point. But there is a lot of resistance, especially, as she says, "it was only a headache, after all". Learning about the disability movement (sort of simultaneously with feminism and anti-oppressionn generally) has been one of the greatest benefits for me.

*Anxiety, depression, and fatigue are some of the most common headache co-morbitities, because they are rooted in the same basic brain chemistry. The same neurotransmitters are involved.

*There is a whole chapter on "Tired Girls", women with fatigue.

*Acceptance: "I'd done all I could to get rid of that motherfucker, and I'd lost." (p. 225) She says this after almost 10 years fighting the headache.

In short, reading this book just validated a lot of my own experience. I'm glad I craved acceptance and worked towards it; I'm glad I found a pain counselor; I'm glad I'm learning about disability rights. I didn't take some of the super-strong drugs Kamen did, but I still had scary experiences with things like Tegretol and Lyrica.

The book ended on a not-very-positive note: there is no cure for chronic pain (is there a cure for ANY neurologic disease? No). Chronic pain is a progressive disease for many people. The treatments suck and have bad side effects. Alternative/complementary treatments can be helpful, but are highly individualized, often expensive, and sometimes stop working over time. The author includes a manifesto aimed at doctors, the government, journalists, insurance companies, and society in general, with specific things they can do to help.

Date: 2009-09-18 05:22 pm (UTC)
jesse_the_k: Macro photo of my Blue Heeler Lucy's deep brown left eye (expectant)
From: [personal profile] jesse_the_k
Thanks for pointing out the ill-considered bit re: eating disorders, I hadn't noticed that the first time round.

She's grown on that particular topic, since her next book Finding Iris Chang is a biography of this feminist historian of China. Chang, in addition to bringing the Rape of Nanking back into the Western consciousness, had eating disorders and (undiagnosed) mental illnesses; she killed herself in 2004.

When Kamen read here at Room, I was amazed to discover that she hadn't done any reading in "disability studies." Which is an argument for the wisdom of D.S.'s fundamental analysis, since she reaches very D.S.-like conclusions in the book. I was surprised that very few D.S. books show up in her links list on her site, but if she's like me her site is no accurate indicator of much. Mary Felstiner's Out of Joint also looks at the "tired girls," and how sexism in the medical realm makes getting helpful treatment more difficult.

Sadly the Vertosik quote seems to be applicable no matter what the source: when my hands hurt too much to use, then that's the fundamental fulcrum of my humanity; when it's back spasms then it's the fundamental base of my being et fuckin' cetera :,)

Date: 2009-09-18 07:38 pm (UTC)
raanve: Tony Millionaire's Drinky Crow (Default)
From: [personal profile] raanve
I wonder if this is, at least in part because it can be hard to reconcile "invisible illness" and our culture's understanding of disability. I know that I never really much considered this connection until I started having conversations at WisCon about disability and access, and by that point I'd already been living with (often chronic) headpain & Major Depressive Disorder for more than 10 years.

That's kind of an unformed thought (pain today, and also a cold, yay). But I think that might have something to do with it. (It also didn't occur to me to think about this in connection with Kamen's book -- though again, I read it before I started participating in these kinds of conversations more regularly.)

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