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Tuesday, January 14, 2014

For Dying Out Loud

Emma G. Keller's article about Lisa Bonchek Adams' tweeting about her life with a terminal illness has prompted a firestorm of debate about privacy and dignity on the internet.  Lisa Bonchek Adams' twitter feed may be visited here: https://twitter.com/AdamsLisa/status/421005045929619456. I wish I could link to Emma G. Keller's article, but I can only share with you where it used to be posted: http://www.theguardian.com/commentisfree/2014/jan/08/lisa-adams-tweeting-cancer-ethics and direct you to her husband, Bill Keller's  gloss on the article here: http://www.nytimes.com/2014/01/13/opinion/keller-heroic-measures.html?_r=0.

Although Bill Keller's article appears to be attracting much of the heat in the blogosphere, it is Emma Keller's article that is worth the debate because I think it sheds light on who we are as a people.  She analogizes funeral selfies to terminal illness tweeting and frames the poignant question of whether a terminally ill individual is morally suspect for "dying out loud" with some 10,000 tweets generated over Lisa Adams' several year journey.

Interestingly, the terminal illness tweeting did not appear to discomfort Emma Keller until it became more persistent, more frequent, and more disturbing. Lisa Adams' recent tweets are about treatment for intractible pain for cancer that has metasticized to several of her organs and bones.

And so it is with the dying and the old in our society. We welcome -- it seems to me -- them as brave exemplars of the fight against age and disability but file them away under disturbing and self-involved, when disability and death gain the upper hand.

You see, so far, everyone dies. Lisa Adams is narrating a part of her life.  A brief visit to her twitter stream is scary though, interestingly, optional. Emma Keller is disturbed yet unable to turn away. And I give Emma Keller credit for caring enough to want to know the end game, even though she clearly does not want to know the details. But Lisa Adams does not want to just phone it in.

Lisa Adams is dying out loud. I suspect she has always lived out loud. Those who measure her attempts to make sense of her life and her highly medicalized dying, while she is living it, against the stoicism of others who have moved more quickly toward palliative care have abysmal timing.

Yet we are many of us tone deaf to the dying among us. We are a death denying people. Observing Lisa Adams' life journey may be worthwhile precisely because of the discomfort it brings.

Posted by Ann Marie Marciarille on January 14, 2014 at 11:55 AM | Permalink


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Hi Ann Marie. Emma Keller's piece is archived here: https://web.archive.org/web/20140109033020/http://www.theguardian.com/commentisfree/2014/jan/08/lisa-adams-tweeting-cancer-ethics

As for "[t]hose who measure her attempts to make sense of her life and her highly medicalized dying, while she is living it, against the stoicism of others who have moved more quickly toward palliative care," they not only "have abysmal timing," they (e.g., Bill Keller) get the basic facts wrong. Her current hospitalization, for instance, is in fact palliative, designed to reduce the pain produced by her bone mets, and so is not especially medicalized nor a particularly "heroic measure." And although she has participated in cancer trials, his comparison of his 79-year-old FIL's "calm" death to the decision of Lisa Adams, forty-something mother of three young children, to try to do "as much as I can for as long as I can," as her Twitter profile puts it, is inapt. Worst are his suggestions that she has not accepted her terminal status, that she may be giving false hope to others, and that she uses problematic war metaphors to characterize her experienced of illness. To the contrary, she has been very clear that she is terminally ill and that there is, and will be, no cure for her (which does not mean that she wishes to be treated or written about as if she were already dead), and she herself has written about how damaging war metaphors can be in discussing cancer. Bill Keller's other point concerns scarce resources and the expense of end-of-life care, which is a fine thing to discuss, but perhaps not using a particular woman as his case study of "dying wrong."

Posted by: Michelle Meyer | Jan 14, 2014 4:25:30 PM

Totally agreed with Ann Marie and Michelle. *However* anyone deals with terminal illness, they deserve a great deal of respect, deference, and latitude. People who are just beginning this journey (and their caregivers) can learn in many ways from Lisa Adams's experience.

Posted by: Frank | Jan 16, 2014 4:31:21 PM

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