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.

X-posted at PrawfsBlog: http://prawfsblawg.blogs.com/