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[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.)

Date: 2009-09-18 03:43 am (UTC)
From: [identity profile] seaya.livejournal.com
You mention alternative treatments here. Does she talk about acupuncture at all? Just wondering if she tried it and what happened. I'm trying it right now for a chronic digestive issue coupled with some muscle and nerve stuff and so far, even if it is psychosomatic, something appears to be happening. I could be imagining that I guess. But hey. Just curious about her skewering of it! Pun not intended.

Date: 2009-09-18 03:50 am (UTC)
From: [identity profile] sasha-feather.livejournal.com
Yep, she tried it for a while! I also tried it for a while. I've known people who have had amazing experiences with acupuncture, and again I think it depends somewhat on the practitioner and on the person receiving it. Kamen's experience was that over time, the usefulness wore off. I never found it *super* helpful, but I like cranio-sacral treatments.

*shrug*

She talked some about the difference in attitude between doctors and various practitioners, and that really stuck out for me. Doctors often want to "fix" you and are frustrated when they can't. My CST lady just accepts and tries to make things better without chasing after this impossible idea of a cure.

Date: 2009-09-18 04:07 am (UTC)
From: [identity profile] seaya.livejournal.com
I don't know if I was looking for a cure when I resorted to it. Maybe I was just looking for something I could access directly without jumping through hoops. But so far one aspect of it has gone away (it no longer hurts like hell when I press on the area around my belly button), so whether this is why or not, I feel like I got something out of it.

The herbs kept me up all night when I tried them though. That's not a known symptom of them, so he wants me to try again and take them in the morning. But...I chickened out. I don't like taking things after I have a bad reaction to them one time that involves not sleeping. Call me irrational!

I think I had cranial sacral at one point when I had neck problems, not sure. At one point I have also had trigger point injections. Those were pretty cool, but the doctor was fucking annoying and wanted me to take anti-histamines and pain meds daily. The former, because my skin gets red if you press on it, oh teh noes!!!! I'm not you know, pale or anything! I shit you not. The latter as I guess a prophylactic.

So, like you say, it's all down to the practitioner being a fit or not, and the patient saying fuck no when things are not cool.

Date: 2009-09-18 04:11 am (UTC)
From: [identity profile] sasha-feather.livejournal.com
Yeah! I hate when they pressure you to do things you don't want to do. I'm bad at saying no to that shit, even though I can be assertive in other situations--it's just a weird power dynamic.

Date: 2009-09-18 04:12 am (UTC)
From: [identity profile] seaya.livejournal.com
You can feel the sneer when you do say no, but like after you do, it feels good to have ultimate control.

Leaving, stopping, walking away is the best power ever.

Date: 2009-09-18 04:30 am (UTC)
From: [identity profile] spellercopter.livejournal.com
I think her view on eating disorders is limited-- but I also understand what she's saying. There are many reasons why women develop eating disorders, but I think she's attacking the cultural values of this sort of eating disorder that gets attached to women of a certain social status. It's one thing you can still pity white class-privileged women for-- self-hatred of their bodies. Granted, this, like I said, is a SEVERELY narrow understanding of the myriad ways in which eating disorders develop.

Also, don't trust anyone who uses third wave feminism as a flag of feminism. It's a flag that gets waved under the guise of "it's my choice to (insert action here, whether it's feminist or not), and because I'm a feminist, that action is feminist." Sounds like she's got a sort of awkward understanding of her own feminism. Also, it sounds like she's internalized a lot of self-hate which would be why she'd poke fun at eating disorders like they're just something that happens to one type of person.

SO MY TWO CENTS.

I'm glad the book was mostly positive though!

Date: 2009-09-18 04:37 am (UTC)
From: [identity profile] sasha-feather.livejournal.com
Also, it sounds like she's internalized a lot of self-hate which would be why she'd poke fun at eating disorders like they're just something that happens to one type of person.

Yeah, I think so, which is why she went on a rant about what it was like to be suddenly more fat than she was before and how hard it was to buy clothes OMG! Which was weird to read in a book ostensibly about Chronic Daily Headache. I mean, she could have done some research into feminist views on body image, disordered eating, fat acceptance, et cetera! But it did not appear that she did, despite being a person given to research in other areas.

I also think that overeating (I must finish all the food on my plate-- it is immoral not to) is disordered eating as well and can lead to indigestion.

Date: 2009-09-18 10:02 pm (UTC)
From: [identity profile] xanthophyllippa.livejournal.com
Except that weight gain is such an added insult to chronic issues that intellectualizing it doesn't help. If she's writing about her own experience, and if it bothered her that a treatment intended to help her ultimately caused her more anguish, why should she have to research body image in order for her views to be valid? It's not internalizing self-hate for her to be pissed off that she now has a second condition that leaves her feeling unhappy, and she's not required to accept a body she isn't happy with in order to be a legitimate intellectual. Is she not allowed to rant about anything that isn't immediately Chronic Daily Headache?

This is an extremely sore point with me, I'm afraid. A while back I had a serious endocrine issue that needed some pretty harsh intervention. The treatment put me on a biochemical roller coaster that, in turn, needed another intervention. That second intervention caused me to gain 13 lbs. in two weeks and roughly 20 lbs. in a month - weight it took me nearly a full two years to lose. I cannot tell you how rude and offensive it was to have people tell me that I should love my body or have a better self-image while I was struggling with these three conditions. It WASN'T my body - it was a body that was forced upon me by drug therapies, and the added anguish of being uncomfortable with my extra weight (physically and emotionally) made treating the initial problem harder. Absolutely no amount of research into feminist theory on self-hate, fat phobia, body image, whatever would have led me to be proud of that XXL version of myself, given how physically miserable I was.

I'm not saying people shouldn't learn to appreciate their bodies. But I am saying that her dissatisfaction doesn't automatically mean she's engaging in self-hate.

Date: 2009-09-18 10:20 pm (UTC)
From: [identity profile] sasha-feather.livejournal.com
Well-- this is sort of my point. It's a sensitive and complicated issue. And she did not deal with it in a sensitive or nuanced way, despite the fact that she was very capable of dealing with other complex issues in a balanced, nuanced manner.

Date: 2009-09-19 01:57 am (UTC)
From: [identity profile] xanthophyllippa.livejournal.com
That didn't come across as your point, though. It looked to me a lot like you were complaining that she was complaining about being fat. I may have misinterpreted; I'm working on about 4 hours of sleep today.

Date: 2009-09-19 02:43 am (UTC)
From: [identity profile] sasha-feather.livejournal.com
Well, even if she is complaining about being fat, yeah, that's still annoying. That's a rant, an old, tired rant, and it's not treating the subject in a nuanced or sensitive way, since it's not exploring various perspectives the way the rest of the book does. See below for my position on rants. It's OK to complain about being fat, but maybe don't do it in your published book on chronic daily headache. Maybe do it in your blog or in an email so that the rest of us don't have to be annoyed by it when we're trying to read the rest of your excellently well-researched book. That's what I'm complaining about. And it's OK for me to rant about it since this is my blog.

Date: 2009-09-19 04:16 am (UTC)
From: [identity profile] xanthophyllippa.livejournal.com
Of course you should rant. But my point is, to her, it's relevant. Maybe she doesn't feel nuanced about it; it's also possible that some of her readers don't find it annoying and are instead thinking "Yeah, right on; pisses me off that my meds screwed with my weight." I'd be one of those readers; for whatever reason, you're not. Neither one of us might be representative of how she thinks about weight as relevant here.

Date: 2009-09-19 07:47 pm (UTC)
From: [identity profile] sasha-feather.livejournal.com
Of course you should rant. But my point is, to her, it's relevant. Maybe she doesn't feel nuanced about it; it's also possible that some of her readers don't find it annoying and are instead thinking "Yeah, right on; pisses me off that my meds screwed with my weight." I'd be one of those readers; for whatever reason, you're not. Neither one of us might be representative of how she thinks about weight as relevant here.

You know, I don't know what you are expecting from me here. I did allow in my original post that other people might not be as upset about this passage as me:
Also I am rage-filled lately and tend to stew about things. Maybe other people would not be as bothered by this as me.

I am at a loss here. Are you just arguing for the sake of arguing? To you want me to concede something to you? Are you just working through your own issues? My original points stand. I am upset that you came into my journal and turned a discussion into an argument, frankly. I hope that you do not do this type of thing again because it is not cool.

Date: 2009-09-18 02:34 pm (UTC)
From: [identity profile] antarcticlust.livejournal.com
I love your comment about third-wave feminism! YES!

Date: 2009-09-18 02:36 pm (UTC)
From: [identity profile] antarcticlust.livejournal.com
Wow, that comment about eating disorders is so surprising, especially coming from someone who wants social acceptance for her own condition. Isn't the headache bad enough? Are we supposed to feel more empathy for her because she gained weight? I'm right there with you - you should write to her and let her know!

What are the Oliver Sacks critiques, out of curiosity?

Date: 2009-09-18 03:43 pm (UTC)
From: [identity profile] sasha-feather.livejournal.com
Re the eating disorders passage, I was torn because I knew she was trying to be funny, and making fun of her own thoughts as she gained weight--and that people with chronic pain are allowed to snark and make mistakes as much or more than others-- but I couldn't believe that she let those words stay in the book, or that her editor did, because they are just so insensitive.

The Oliver Sacks passage is very funny and interesting. It's part of a larger theme she has on doctors (particularly the male establishment) who engage in victim-blaming, particularly of female patients. She gets into the history of hysteria, The Yellow Wallpaper, and Freud, etc, and is pretty good at presenting a balanced viewpoint.

Kamen cuddles up with Sack's book Migraine, looking forward to it because he is so well-regarded. And then she is crushingly disappointed when he does the same thing: he victim-blames, he insinuates that chronic migraines (unlike episodic ones) arise from some emotional situation that the patient is perpetuating, that they are caught up in a "chronic illness lifestyle", all because their pain does not respond to drugs they way episodic migraines do.

She also quotes one of his case studies in which he describes an ill woman with colitis and migraine as having a "pitiful" case history. He really seems to be sneering at her.

Stay classy, Oliver!

Well, obviously he's a well-regarded neurologist who has made large contributions to the field and has a lot of strengths. That makes it worse in my view.

And this type of language and victim-blaming, and especially singling out of women, is typical of the wider historical culture of medicine, according to Kamen.

Date: 2009-09-18 10:07 pm (UTC)
From: [identity profile] xanthophyllippa.livejournal.com
No, you're supposed to share her irritation that medical therapies often cause secondary problems that make the primary condition harder to deal with, and that doctors often don't warn patients about all the possible side effects. (I wouldn't have tried Lexapro if I'd known I'd end up still depressed AND 20lbs heavier.)

Besides, if she's in such overwhelming physical pain to begin with, what for other people might be a minor annoyance - ugh, gained a few lbs, need new pants - could well be a truly insurmountable problem.

Date: 2009-09-19 03:44 am (UTC)
From: (Anonymous)
That's not really the impression I got from the passage.

Date: 2009-09-19 03:45 am (UTC)
From: [identity profile] antarcticlust.livejournal.com
That's not really the impression I got from the passage. There's no reason to use a condition that other people share as a pejorative, especially if you're wanting non-chronic pain sufferers to be empathic to your condition.

Date: 2009-09-18 09:45 pm (UTC)
From: [identity profile] xanthophyllippa.livejournal.com
How is that making fun of people with eating disorders? It reads more like she's criticizing the social elite who have decided that being a walking skeleton is fashionable. If anything, she's making fun of her own family for being so common as to think eating is actually necessary.

Date: 2009-09-18 10:24 pm (UTC)
From: [identity profile] sasha-feather.livejournal.com
No, she's implying that eating disorders only happen to "high class" people and that by not being high class she was not cultured into having one. Thus she's unable to stop eating and diet when she starts gaining weight (which falsely equates dieting with disordered eating). It's a really offensive passage. It also ignores overeating as an eating disorder.

Date: 2009-09-19 02:00 am (UTC)
From: [identity profile] xanthophyllippa.livejournal.com
But I think you've just repeated my point, here: that the skinnyness associated with eating disorders is more prevalent among the rich and famous. I suspect she isn't actually referring to eating disorders literally, but rather using the term as a metaphor for that Mary-Kate and Ashley style of thinness.

But then, you've read the book, and I haven't.

(Finishing what's on your plate out of guilt isn't necessarily overeating, though.)

Date: 2009-09-19 02:01 am (UTC)
From: [identity profile] xanthophyllippa.livejournal.com
Sorry, I didn't mean to say that eating disorders themselves are more prevalent among rich folk - just that very skinny famous people tend to get press, and that the assumption is that if someone is that bone-thin, they must have an eating disorder.

Date: 2009-09-19 02:07 am (UTC)
From: [identity profile] sasha-feather.livejournal.com
Actually, Mary-Kate Olsen does have an eating disorder. But that is beside my point, in the book she refers to eating disorders specifically, not the media portrayal of thin women.

(Finishing what's on your plate out of guilt isn't necessarily overeating, though.)

That's true.

Date: 2009-09-19 12:03 am (UTC)
From: [identity profile] sasha-feather.livejournal.com
I also want to be clear that there was a larger context to the section--I didn't retype it all. Basically it felt to me like she was saying, "Wow, I've gained weight! An eating disorder would sure come in handy right about now. Too bad my family was too low-class to give me one."

And at that point I nearly lost faith in her as any kind of authority-- the way the reader holds the author (ha, literally) as an authority on their subject. Which made the rant that followed all the more obnoxious to me.

I want say also that I'm a rant-friendly person: I just think that there is a time and a place. Blogs, coffee, emails, letters, the bar, going for a walk, all are places where venting and rants are appropriate. A published book on a tangential topic? It seemed really out of place, like she was showing her Id (to use a fandom term) unintentionally, airing her issues when she didn't mean to.

Date: 2009-09-19 02:03 am (UTC)
From: [identity profile] xanthophyllippa.livejournal.com
Maybe it's a function of having read that larger context.

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