For years, Lisa Bonchek Adams has, very publicly, chronicled her breast cancer treatment on the internet.
On Wednesday, Guardian reporter Emma Gilbey Keller, very publicly, questioned whether Adams’ trail of 165,000 tweets was “educational or too much?”
And yesterday, New York Times columnist Bill Keller (and Emma’s husband) very publicly wondered whether Adams was not only being too out-there in her fight to live, but also too determined to fight at all.
Overnight the emerging narrative on Twitter and in the comments sections of both the Guardian and The New York Times has become the smug Kellers vs. the suffering mother of three. That is far too simple a construct. Bill and Emma (who, by way of full disclosure, I consider both colleagues and friends) got a lot wrong in their tandem pieces (starting with the overkill feel of there being TWO pieces in one week.) But their mistakes were far more complicated than gratuitous bullying of a desperately ill woman -- they were a misreading of the constantly changing relationship between humanity and technology.
In Emma’s piece, Technology = Internet, and her questions are specifically about whether Adams has moved the TMI line too far. “Are her tweets a grim equivalent of deathbed selfies,” she wonders, “one step further than funeral selfies?”
In Bill’s piece, the technology he questions is broader, leaving him wondering whether Adams is an example of a society that tortures patients with treatment when the possibility for a cure has long past. To him Adams' warrior mentality, her determination to use every resource and clinical trial and invention of modern medicine to stay alive, represent false hope, emblematic of a very American way of thinking. Writing of his father-in-law’s death from cancer two years ago, for which he was “unplugged from everything except pain killers and allowed to slip peacefully from life,” he sees "a humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America."
Bill is absolutely right that Americans, as a culture, regularly take the fight too far. And he is right that there is a cost. The monetary one is measurable: Nearly one-third of government money spent on healthcare in this country each year is spent in the last six months of a patient’s life. Less measurable is the emotional toll. Unlike Emma’s father, mine had a painful death, ravaged by the chemotherapy that no one really thought would work.
And Emma, too, is correct that the tools of modern communication are drawing all of us into places we might prefer not to go. These can be dangerous lines to cross, she quite sensibly warns, noting that others who have gone before have learned that the hard way. “Journalist Xeni Jardin live tweeted her cancer diagnosis two years ago and the long treatment journey,” she writes, but later told a reporter for the Guardian “that she wasn't sure if she would be quite as ‘sharey’ if she could go back in time.”
Where both Kellers went wrong, however, was not in raising these questions but in choosing Adams as their answer. True we need a national conversation about “how much is too much.” But the reason the lines are blurred in the first place -- i.e. the very reason we need that conversation -- is because what is one patient’s torture is another’s reassurance that they have done everything they could. Emma’s father was 79 when he died two years ago, with multiple health problems. Lisa Adams was 37 when she was diagnosed seven years ago, with three young children. Yes, her years of treatment have been agonizing at times, and I would not presume to tell any patient that they must choose that painful, possibly fruitless, path. I also would never dream of telling them that they shouldn’t. What Bill sees as extra years of "frantic medical trench warfare," Adams sees more simply as extra years.
As for sharing those years publicly, more-information-than-we-are-used-to, and even more-information-than-we-are-comfortable-with is not the same as too-much-information. Adams clearly feels connected, comforted and purposeful when she chronicles her treatment and her pain. Emma knows this feeling well, having written online about her own double mastectomy and reconstructive surgery a year ago.
Yes, she made a different choice than Adams -- summing up her story in one blog post months into her recovery. Still, that post (which I was led to by her Twitter account) served the same purpose as Adams’ tweets -- presenting her own story, feeling supported by a larger world, and educating that world about her realities.
And therein lies the irony. The technology that Emma laments and Bill warns of, is the very best instrument to start the conversation that both of them so rightly urge society to have. They have begun. It is up to the rest of us to continue.
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