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Tuesday, January 14, 2014

Cancer and Shame

Plenty of things to write about here, but I'm going to start with "Cancergate*," the unoriginal moniker for the pair of columns penned by Bill Keller at the NYT and his wife for the Guardian.  His op-ed piece seems to be, in part, a response to the reaction hers received.

Have you read them?  Good.

I read his first, yesterday, and have been following the comments about it on Twitter with interest.  For the most part, they have been vitriolic, although one article I read did mention that commenters on the NYT site were more thoughtful.  I'm also reading Brene Brown's book I Thought It Was Just Me (but it isn't): Making the Journey from "What Will People Think?" to "I Am Enough," and so the first thing I thought when I read his piece was that he was reacting out of shame, and that he was defending his wife, and perhaps, her shame.


Brene makes a really useful differentiation between shame and guilt, which boils down to this (for me): guilt is over an action that you took or are taking, which you can stop, and which you regret.  Shame is a gut reaction based on external influences from your childhood, society, the media, etc, which has nothing to do with what you did but everything to do with other people's perception and judgement of you.

I just read her piece today, and what I took from it was that she was engaging in (public) self-examination around her fascination with Lisa Adams' blow-by-blow account of her ordeal with cancer and cancer treatment, and grappling with such questions as, was she being a voyeur by following the twitter account so closely? Why was she so obsessed? Is this a new cultural phenomenon, and if so, is it positive or not?

I didn't really read judgement in Emma Keller's piece - certainly not of Adams.  I did see self-examination, and an extrapolation of that to cultural examination, and our obsession with real reality TV.

Bill seemed to set out to defend his wife, and told us about her own recent brush with cancer, as well as her father's peaceful death from the disease. He compared the British health care system favorably to that in the US, noting that doctors and hospitals in the States tend to take heroic efforts to save lives in every situation, even those like that of his father-in-law in which the patient might prefer to proceed without painful treatment. He notes that her choice to fight the cancer is different than that of his father-in-laws, but does not decry it.  He goes on to say it is working for her, it is beneficial to the hospital, and calls her social media campaign a sort of "self-medication."  What he does call into question are the social/cultural benefits of such a campaign - to what end does it benefit us, the watching public?

It's his closing remarks that really send people into a tizzy, I think - so I'll put them all here for reference:

Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out, Adams is the standard-bearer for an approach to cancer that honors the warrior, that may raise false hopes, and that, implicitly, seems to peg patients like my father-in-law as failures.


Steven Goodman, an associate dean of the Stanford University School of Medicine, said he cringes at the combat metaphor, because it suggests that those who choose not to spend their final days in battle, using every weapon in the high-tech medical arsenal, lack character or willpower.

“I’m the last person to second-guess what she did,” Goodman told me, after perusing Adams’s blog. “I’m sure it has brought meaning, a deserved sense of accomplishment. But it shouldn’t be unduly praised. Equal praise is due to those who accept an inevitable fate with grace and courage.”
  
Here's what made me think of Brene's book - I imagined that his wife was likely still dealing with her own feelings and fear about her medical health, and her father's recent death.  I thought about how she must be processing these issues in part by following the Lisa Adams' story so obsessively, and how, as a columnist, she naturally wrote about this intersection of personal and societal obsession.  I wondered if she felt ashamed of her father for giving in without a fight - if there was some unspoken pressure from her upbringing or not so unspoken from society which told her that a real man, a strong man, would have fought to live.  

I wonder if his rush to write his own column was, in part, a way for him to express to his wife and to the world that it's OK to choose palliative care over aggressive treatment.  I didn't take from his words that he judged Lisa Adams for doing so, only that he wanted to point out that just because she is unarguably heroic for fighting so hard and so publicly to manage her disease in the manner she chooses, that her choice doesn't negate the different choices other people make.

Ultimately, I wasn't offended by their columns - but I realize I'm in the minority.  I didn't think either one of them were criticizing Lisa Adams' choices around her medical care; rather, they questioned the prolific social media posts by Lisa, and the equally avid consumption of them by the public (in Emma's case, including herself); and called for recognition of palliative care as an equally heroic alternative.

I'd love to hear what you think, though - what's your take on it?

* 1/15 Update:  John Stewart and I are on the same page

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