This week lots of people, in media both traditional and social, discussed a woman named Lisa Adams. Lisa Bonchek Adams. Lisa is a mother, in her her early 40s, who had breast cancer around 5 years ago. When I first started following her on Twitter, some time around 2010, Lisa was there as someone who had made it through. Not in a self-congratulatory way, more like, “I had cancer, and at the moment, I don’t. Now please go get your medical tests and by the way here’s something funny my kid said.” She tweeted her regular life, in those days, more than any future death or disease.
She was hanging out and chatting, like the rest of us.
Then about a year ago – I’m imprecise with all of this, but what I have to say doesn’t require exact timing – Lisa was diagnosed with metastatic breast cancer. She’s been very clear since, on Twitter again, that she understands she is going to be dealing with this disease all her life, and also clear that she’d like that life to be as long as possible. She says it best, above.
She has 3 young children. Imagine.
But last week a journalist wrote a piece questioning Lisa’s tweeting in this time of her life. It’s been taken down because the writer didn’t get permission to use emails she’d exchanged with Lisa. Then, and here’s where it gets worse, the New York Times published something by the same journalist’s husband, Bill Keller. This time focused on the “rightness” of Lisa’s ostensible “fight” approach to her disease.
He wrote as though Lisa were in the final stages of a long battle. Whereas her metastatic cancer was diagnosed only a year ago, and she is not dying. There were more inaccuracies – he even wrote that she had two children, not three.
A justifiable hue and cry ensued. Maryn McKenna, who we’re lucky to have occasionally comment on Privilege, summed it all up here.
As the dust settles, and we move beyond poor journalism, not to mention nasty human behavior, I wonder, “Well, what if Lisa had been dying. If this were a deathwatch, what then? Would the published pieces have held up?”
Ask yourself, is there anything wrong with deathbed tweeting? Should we go quietly, and with palliative dignity into our graves? We celebrated Christopher Hitchens and Roger Ebert, who wrote publicly until they died. Problematic?
I don’t think so. Sure, there’s an element of voyeurism, as we read the words of someone on their way to death. But isn’t everything on the Internet voyeuristic at heart? We see people through pregnancies, births, weddings, sorrows, divorces, wisdom. Some tell their stories honestly, some with no respect for honor or truth. Such is our species.
Death’s the final taboo. The medical institution has closed the doors on final days. No one meant badly, but there have been many consequences. And maybe opening those doors, a crack, is a good thing. I believe that as long as we are going to be living public lives, public deaths might be one of the virtues of privacy’s end.
I’m very scared of dying. I wrote about it here, early on in the blog life. Somewhat less than entertaining, as a topic, and pretty much unsustainable. As you can imagine. Recently I’ve been trying to convince myself there’s an afterlife. It’s not easy for an atheist. What else to do about fear?
I have belonged to a forum, College Confidential, since my kids were applying to university. As it happens, in these years two women members have died, and posted about their disease in the months leading up to the end. They went by Latetoschool, and sunriseeast.
I remember feeling voyeuristic as I read along. I remember feeling that I knew it wasn’t going to end well, and shaking my in head at all the facile posts of encouragement. “You’ll beat this thing!” The professions of prayer against the inevitable.
But I also remember how their experience lived inside me. How I learned about disease progression, and choosing a doctor, and the internal language of the ill. How I imagined myself in their situation, and how, once specific, it was less scary than when abstract. A little less.
There are ways in which all this public expression is self-serving, false, and degrading to profound experience. And there are ways in which it’s filling in a gap first opened up by freeways, telephones, and mobile factors of production. It takes a village, to die as well as live.
Lisa, so glad to hear that you’re done with this round of radiation. I hope that you get home very soon. And thank you very much for the Twitter reminders. I’ll carry on your tradition here. If any of you have been putting off a medical test, don’t. I promise, colonoscopy prep isn’t quite as horrid as the comics like to joke.
Poop just makes for a more entertaining subject than dying. And if a High WASP can say “Poop” in public, well, the world is indeed changing.
You can follow Lisa, if you’d like, on Twitter at @AdamsLisa. I value her practical voice, even if only as a reminder that honesty serves us when we live in our good hearts.
Have a wonderful weekend.