eloriane blogs the NOOZ

Remember that guy who sends me awesome email forwards? He recently sent me a link to a New York Times news article called What’s Wrong with Summer Stiers? It’s about the new Undiagnosed Diseases Program at the National Institute of Health, which brings together experts from all different specialties to investigate about a dozen really, really weird cases per year. It’s pretty long, and so is my response. Here’s how it opens:

Her breasts are beautiful. This is a surprise. Seeing them looking so healthy and normal reminds you how young this patient is and what her life might be like if her body hadn’t started to disintegrate in her childhood. If all you could see were her breasts, you would think she were perfectly fine. But that would be like the blind men trying to describe the elephant when each one focuses on a single part. Look at the rest of this patient’s torso, and you start to get a sense of the fuller story. A little bit higher, near the left clavicle, you notice a bump beneath the skin marking the implantation site of her vagus-nerve stimulator, which delivers an electrical impulse to her brain every three minutes to stave off the seizures that would otherwise plague her. A little lower, on the right-hand side of her abdomen, you see a hole and a permanently implanted tube through which she has hooked herself up to peritoneal-dialysis equipment every night for the past five years, to flush out the toxins that her ruined kidneys cannot.

Um. Cool. I’m sure she’d be, uh, really glad to know that you like her breasts so much.

Seriously. That’s 184 words of some of the most blatant objectification I’ve seen. The journalist literally just talks about her as a collection of body parts and organs. We go two hundred and forty-eight words before we even learn this woman’s name (Summer Stiers), and even then, she’s just “a petite, feisty, 31-year-old woman from Oregon” who is, apparently, totally defined by her disease, and yet totally separate from it; it’s all the journalist wants to tell us about her, but she, as a person, is notoriously absent from the description.

Anyway, I kept reading, wondering where the heck we were going with it, and it turns out I was reading a description of House, M.D.:

The board reviewed 10 or so cases at each monthly meeting, out of which it accepted just a handful, the ones that seemed most likely to lead to a new insight into a known disease, or, even better, to a diagnosis of a disease never before seen. Then Gahl’s staff arranged to bring in each patient for a week of assessment in Bethesda. There, the patient would meet an array of specialists who did physical exams, took histories and conducted whatever additional tests they needed: ultrasound scans, M.R.I. scans, X-rays, electroencephalograms, maybe a spinal tap or a biopsy of skin or other tissue.

… After the cavalcade of specialists, each with a favorite organ, parades past the patient’s bedside, they gather in impromptu meetings to try to connect what they see to what others are seeing that they themselves might have missed.

No, really, it’s House:

“This is what we’re really all about at N.I.H.,” says Gahl, a compact 58-year-old who tends to make dry jokes in his slightly gruff baritone about almost everything — except science.

Ok, Ok, so this is seriously fascinating and exciting and could mean some really cool things for science. But that opener only left me two options, mockery and depression, and I’m going with mockery, dammit!

People continue to talk to us about Stiles in all sort of excitingly dehumanizing ways:

As he described Summer Stiers to me for the first time in October, Gahl sounded like a mixture of teacher, scientist, enthusiast and old-fashioned healer. “It looks like she has leaky membranes; what causes that?” he began, as though he were a senior attending physician and I were a medical student on rounds. “She had a diagnosis as a child of Coats disease, where fluid leaks out of her eye, and then there’s a reaction; her eye was removed. Her kidneys are ruined; her gut is problematic, she had bleeding; her lungs are reasonably O.K.; she’s got calcification in her skin; her vessels leak.” Gahl was certain he would accept her into the program. “This is an absolutely great case,” he said.

The reporter assures us that she’s actually a person, too, they swear… by quoting someone else’s medical opinion!

“We appreciate your interest in helping us make a diagnosis in this wonderful 31-year-old woman,” Pinnick wrote, “whose indomitable will to survive and always positive and pleasant attitude make her case not only tragic, but intriguing and a joy to pursue.”

BUT WAIT! Halfway through page 2, and one thousand, nine hundred and forty-five words, into the story, Stiles speaks!

“They don’t know why it is, since I’m doing everything they tell me to do; I’m eating just what they tell me to,” she said. “That’s kind of what my whole life is. I follow directions — I’m a good little follower, I do what I’m told — and this happens anyway.”

It’s also important to note that as she said this, “[s]he was soft-spoken, with a lilting, little-girl voice.” Yeah. This really isn’t an improvement.

The rest of the article doesn’t really change. It’s a whole lot of detail on the tests they did and their hypotheses and the goals of the organization, and some very well-written science journalism– it’s precise but clear, and uses actual experts as references– but the with occasional paragraph thrown in about Stiers’ life story and hobbies, and a whole lot of commentary about what a good little girl she is. No more awkward breast-talk, but she’s still never humanized.

So why am I blogging all this? Well, mostly because I think it’s interesting. But also because I think that the interesting bit is the way that this attitude– the dehumanizing focus on the disease, rather than the person– is representative of modern medicine in America in general, and the medical treatment of women in particular. Well, there are two things going on here. First is the idolization of woman-as-martyr:

When Summer Stiers finally arrived at the N.I.H. Clinical Center on Monday, Dec. 8, her pleasant attitude was nowhere in sight. She and her traveling companions, Doug Ward and Kim Plummer, were still grumpy about the trip from Oregon. On better days they might have focused on the program’s largess — everything about this trip, from the airfare for Stiers and one parent to the hospital costs to lodging at the Edmond J. Safra Family Lodge — was free to them, all of it paid for by the N.I.H. But on the first morning, they spent a lot of time talking about their trouble driving from the airport to Bethesda the previous night and going through security to get onto the N.I.H. campus and finding the cafeteria closed. Stiers settled down after she had a chance to order breakfast — an omelette with Cheddar cheese, tomatoes, onions, mushrooms and ham, and some apple juice to help her swallow the four pills she takes at the beginning of every meal or snack to help her regulate phosphorus — and her headache finally went away. As Plummer pointed out to me, Stiers is easily set off course; she needs all her emotional and physical resources to get through a day, and when anything goes awry, she tends to take it hard. But after this bad beginning, Stiers rallied and showed herself to be tougher than anyone expected.

It’s ungrateful for her to be grumpy, even though she is ill and has just had a hard trip. She needs to “settle down” and not “take it hard” when things go wrong. This seems to me to reflect the idea that women are supposed to be self-sacrificing at all times, which means never “whining,” even when they are literally dying. It’s more important to Be Nice. This vision of women as uncomplaining angels who can/ should put up with anything while still placing others’ comfort above their own is pervasive and dangerous. I am sure that women have avoided seeking needed medical care because their own health is not a priority compared to those around them, and even more women have failed to indicate the severity of their needs because they don’t want to bother others with their whining. The social punishments for failing to fit the “suffering angel” mode are not pleasant.

Second, the failure, when when attempting to look at a “whole disease,” to also look for a whole person. It is probably true of everyone that the medical culture encourages accepting the word of one’s doctor as the gospel truth, despite its relevance to one’s actual life, but I expect it is even more true of women, and even more so of fat women, women of color, fat women of color… you get the picture. And if that doctor doesn’t see you as a person, but as a body, you can end up in some pretty terrible shape. (Check out Fat Hatred Kills, Part One, for example.)

So. I think this was a really interesting article. I thought it was well-written– even the use of clichés like the “seeing the whole elephant” thing worked well for me. On that level, I actually really enjoyed it. But on the meta level… it’s pretty heinous.


7 Responses to eloriane blogs the NOOZ

  1. Kim says:

    An interesting response to the article on Summer. We appreciated the subtle tones you picked up “between the lines” so to speak.

    Thanks for taking the time to read and respond to the article.
    Kim Plummer (Summer’s “aging hippie” mom)

  2. klio says:

    The parallel of how doctors reduce humans to body parts (understandable, given their profession, though not necessarily the best way to treat the whole patient) and how the reporter reduces a woman to the body parts he’s (she’s?)most interested in (understandable, given his or her profession?) is fascinating. I couldn’t help but think of perfectly sculpted breasts on some of the sickly-thin Hollywood types, that’s in fashion these days.

    The lapse into “woman as quiet martyr,” however, is too depressing for me to address. It would have been nice if the article were balanced out with how she herself feels about having to put on a good face so as not to irritate people when, as you point out, she’s quite literally dying. That would have provided some perspective for all of us who worry about when and how much we’re allowed to complain–or just state our actual feelings and opinions.

  3. eloriane says:

    Klio– I totally agree! And I think the journalist is female; the first name is Robin.

    Ms. Plummer,

    It’s a little tricky, sometimes, writing about real people… I forget that they can find me and comment. 🙂

    I really felt, with this article, that it could have been more humanizing and more interesting if they’d only quoted Ms. Stiers more often! The writer in me is most annoyed by that, really– it’s just how journalism is supposed to work. It strikes me as inappropriate to editorialize so much about someone else’s life, and to not allow them to tell their story in their own words. Like with the “aging hippies” comment that I didn’t write about (“aging hippie” parents are the best ones!) but which was just… unnecessary.

    Anyway, I’m glad that you appreciated my response, and thank you so much for coming by!

  4. S says:

    I couldn’t help but be stunned by the bizarre and fascinating opening. It was the strangest thing ever.

  5. Summer says:

    I appriciated your comments very much. You can imagine my surprise when my parents called to read me the opening line. What do my breasts have to do with anything?
    I guess I was spoiled by my home town newspaper. They did a very good job of telling my story and how I deal with it they made me a human that other people could have empathy for but also cheer for.
    If you’re interested it’s the Bend Bulletin.
    I also think that more credit should have gone to the doctors that have kept me alive for all these years.
    I just wanted to say thatnk you for the great comments. I Agree!

  6. Summer says:

    I would like everyone to know that I do have a college education in massage therapy.
    Thank you,

  7. Crowfoot says:

    Hi Summer, thanks for stopping by! Echoing my co-blogger Eloriane upthread – we have a responsibility when writing about people. They’re not an abstraction or an idea, but real people with a history behind what we’re talking about (and a huge pile of other things, like a degree!). And who might stop by the blog! It’s also what’s kind of neat about this blogging business 🙂

    I, too, was rather surprised by the opening of that article. Well, creeped out is more like it. Ew. I’m glad your local paper has done a better job. My cousin suffers from cystic fibrosis and has talked about being frustrated with being treated more like a disease than a person. Everyone always pokes their noses into what she does or doesn’t do, what she eats, whether she pets that cat, or horrors, owns one. It behooves us to remember all the ways in which people can be othered, and to resist it.

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