The summary of our visit to the geneticists is on hold while I address a topic only peripherally related to C. and her disabilities. But it is relevant to blogging about medical tragedies in general (and, yes, I do consider raising a child with profound impairments a tragedy). It's also a topic that has dominated the blog- and Twitter-sphere as well as major media outlets in the past week. So I'll weigh in.
|Her blog is here|
Camouflaged as discussions of timely social "issues", the two pieces mercilessly deride what blogger/tweeter Lisa Bonchek Adams does.
To begin, in Bill Keller's words, Adams doesn't write; she "pecks". He proceeds to insinuate that the hospital treating her is rewarding the publicity she generates for them with "amenities" (he means her treatment), saying "Neither Adams nor Sloan-Kettering would tell me what all this costs or whether it is covered by insurance." He belittles the hospital's Caring Canines program and queries its cost. (Fact: it's provided by volunteers but why should that matter?) Finally, he contrasts Adams' fight to survive via a series of expensive treatments with the case of his elderly father-in-law who opted solely for palliative care, and then "died calmly" in a more "humane and honorable" - and obviously cheaper - manner.
In her article, his wife, Emma Gilbey Keller, wonders if Adams' tweet tally is “a grim equivalent of deathbed selfies”; accuses her of "dying out loud"; wonders "is this TMI?" and questions the "ethics" of it all.
I've been following Adams ever since her blog was cited in a March 2013 New York Times Motherlode feature. Her sensitivity and empathy coupled with candid but eloquent writing were captivating.
I first shared my blogger "friend" (I have never even sent her a comment) a few weeks ago after she received a shocking anonymous comment. It criticized Adams' "clinical" posts about her terminal illness and its treatments and exhorted her to stick to poetry (at which she excels, by the way). She actually responded civilly to the creep.
But then last week, while she has been tweeting and blogging about the extremely painful period she is currently enduring in hospital, those two ballistic columns appeared.
Ms Adams tweeted that she was "stunned" and "saddened".
.@emmagkeller many inaccuracies. I'm quite perplexed and concerned. Misses everything I'm trying to do. Stunned. Saddened.
— Lisa Bonchek Adams (@AdamsLisa) January 8, 2014
Soon, however, an avalanche of backlash cascaded from just about every media outlet in the world. Support for Adams has been staunch and effusive. Needless to say her Twitter following has skyrocketed.
I imagine that any honest, detailed account of "unsavory" medical cases could inspire the same cringing and, yes, loathing that the Kellers apparently feel for Adam's blog and tweets. Also the expenditure of caring for those with profound disabilities would probably not sit well with those, like the Kellers, who favor cutting medical costs when a cure is improbable.
So in a sense any of us who invest in questionable treatments and share our personal challenges too prolifically for the taste of some others are in the firing line.
To clarify, this blog serves a threefold purpose for me. It is a place to
- Vent about the injustices and incompetence rampant in the medical and educational systems so we can just feel a bit better
- Share the insights and knowledge we have gained over eighteen years raising C. with other parents.
- Enlighten the wider public about the needs of children with profound disabilities.