[cancer|culture] Talking back to the Kellers

On Wednesday, January 8th, Emma Keller, who writes for The Guardian, published a piece called Forget funeral selfies. What are the ethics of tweeting a terminal illness?. (Note, the piece has been taken down, The Guardian simply stating, This post has been removed pending investigation. Apparently Ms. Keller may have breached confidentiality.)

On Sunday, January 12th, Ms. Keller’s husband Bill Keller, former executive editor of the New York Times, wrote a companion piece entitled Heroic Measures.

Both pieces focus on a late stage breast cancer patient named Lisa Bonchek Adams, who communicates via Twitter about her experiences with increasingly aggressive and invasive breast cancer.

A lot of digital ink has already been spilled on this. I linked to one piece a day or two ago, reading both Keller posts at that time. (This was before Ms. Keller’s was taken down by The Guardian.)

I don’t see any particular ill intent in either post. I don’t see deliberately cruelty. I do see some honest attempts at grappling with extremely difficult questions about healthcare costs and decision making and the morality of personal care decisions and the weight of dying.

I also see a profound lack of empathy and self-awareness. I also see a wistful nostalgia for a simpler time when death was a private, even shameful, matter about which no one but the principal and those closest to them had to be embarrassed or made to feel uncomfortable. I see two people who apparently enjoy the wholly transparent privilege of good health being judgmental about those of us in this age of social media on the dark and final journey.

On mourra seul, Blaise Pascal wrote. We die alone. The context for that statement in the posthumous 1669 publication of Pensées was very different than today, but it still rings strong and true for me. Though cancer is, as I have said many times, a social disease that strikes at the hearts and minds of everyone around the patient, in the end, each of us suffers the ultimate extinction as a solitary experience.

But the road to that death… That road is a road each of us can choose to share or not to the limits of our own needs, our own privacy, our audience, our hearts. That two wealthy, healthy people with global soapboxes stand back and pass judgments about the lack of heroism inherent in making a public spectacle of one’s death is both foolish and insulting. And like almost everything else that happens in our cancer journeys, it is inhumane.

There is no special heroism in suffering in silence, as Mr. Keller tries to tell us. There is also no shame in suffering in silence, as Mr. Keller seems to believe people like Lisa Adams and me are saying. Everyone’s journey is their own. Everyone’s degree of openness is their own. In a context like this, concepts of “TMI” and “oversharing” are entirely in the eye of the beholder.

You don’t have to read any of this.

Bill, Emma. If you don’t want to see the spectacle, don’t look. It’s not like Lisa Adams or me or anyone else in our position has, oh, say, to pick an example totally at random, a column in one of the world’s leading daily newspapers. We each tell our own stories for our own reasons. People heed those stories for their own reasons. Our privacy boundaries are where we set them, your reading boundaries are where you set yours.

Surely those of you with powerful voices that project across the world stage have better things to do with your time and resources than assuaging your discomfort at the hard facts of life and death by moralizing about other people’s pain?

14 thoughts on “[cancer|culture] Talking back to the Kellers

  1. SorchaRei says:

    Ms. Keller’s piece was breathtakingly contemptible in a way I haven’t seen mentioned. She specifically complains that Ms. Adams never tells us about how her husband and children are faring.

    To me, her reticence, like yours about your daughter and about Lisa Costello, is a respect for their journeys, their privacy, their right to decide for themselves exactly what and when to speak publicly about their own stuff.

    To me, Ms. Adams, like you, is making ethical choices, speaking about her life and her experience, with the boundaries drawn aporopriately. Ms. Keller, on the other hand, seems to take the position that it may be unethical for Ms. Adams to speak publicly about her experience, but if she does it at all, the by golly, she damned well better break trust with her family by speaking about their private experiences.

    It’s an odd combination of trying to shut down a person making choices about what part of her own story to tell while insisting that to “tell it right”, said person needs to violate other people’s privacy.

  2. Harald Striepe says:

    Until you deal with cancer personally, you have NO IDEA what it feels like. Knowing of the journey makes it easier to travel.

    Personally the play “W;t” my daughter was cast in as Vivian at 16 (what an ambitious high school undertaking!) turned out to be an uncanny preparation. She did hospice work in preparation and got close to a terminal patient, and the play is terrific.

    But there was still a great deal of uncertainty throughout the process starting with that first consult – “You have cancer!” – the operation – “I have to climb on that table myself? How narrow and hard this is!” – the chemo with its slide into malaise and complications.

    When a friend was diagnosed with colon cancer on December 24 and operated on December 31 – what a holiday – I spent considerable time talking with him to orient him on what was ahead. He has told me over and over again that it really made his voyage so far much easier. He is IIIC, it will not be a picnic.

    I believe in the end we learn best through the personal voice and the individual narrative. This is why blogs like this are such an important resource. How else do we know what it really feels like?

    And yes, going through this there are few who do not howl in the night.

    You don’t have to read it. It’s not quite like being in hospital, where it is hard to shut out the sound of the person groaning next to you in the night…

  3. Teri Brown says:

    I’m very active on social media but kept my journey with throat cancer quiet for reasons of my own and didn’t “announce it” publicly until after the fact. Then I talked about it, Lord did I. But honestly, why can we talk about honeybooboo, Duck Dynasy etc, ad nauseum, but are vilified for sharing that which is real and true and profound. Shakes head. Love and light, Jay.

  4. Albatross says:

    No small part of the reason that we’re not supposed to talk about dying is that the indignities heaped upon those who dare use our abysmal US health care system run a good chance of upsetting the masses. Better to shame and hector people into silence, lest the wealthy and powerful be afflicted by the discontent of the rabble.

  5. Ben Fenwick says:

    Fuck ’em and write on.

  6. russ says:

    Bravo – if you’ve not already sent this to the 2 respective newspapers as a letter to the editor, I encourage you to do so.

  7. Megaera says:

    I am simply grateful that you’ve shared this journey. While I wish with all my heart that you didn’t have to go through it, I have learned so much from your chronicle. May your new treatment work far better than your wildest dreams.

  8. Asakiyume says:

    I heard them talking about all this on the radio today, and was thinking of you. And yeah! If you don’t want to read about people’s personal journeys–then don’t! That simple.

  9. Ann says:

    As a woman who has blogged about her end-stage cancer since it was early stage, I found what they did breathtakingly insensitive. Not only did Bill get the facts wrong and clearly has never read Lisa”s words,

    Emma turned it into a moral question – one that doesn’t exist, or at least was settled in the 14th century.

    People are afraid of death. They are fascinated by death…but they are terrified. They want the survivor story, the dancing women, the pink pony tails, the feel-good ending. With breast cancer particularly, there is an obligation to be positive and joyous about our disease, and dance on the way to our mastectomy.

    But when people read our side, those of us with end-stage cancer who will die, and it gets too truthful, they feel bad – like it could happen to them. And when they feel bad, they blame the messenger for making them feel bad. How dare we? How dare we share our ugly lives, our pain, our suffering? Don’t we know it might disturb somebody? We must be bad people. We must be getting free healthcare, petting dogs on the taxpayer dime, we must have something to hide for sharing so much about our physical lives while respecting the privacy of others in our lives.

    We should not be treated for our cancer, as we turn into reminders of mortality. We should go quietly so as not to make somebody uncomfortable, is the Keller’s message.

    It’s fascinating that this poor woman, this Emma Keller, blogged her own DCIS diagnosis, saying she needed anti-anxiety meds from the day of her biopsy, and how she later cried to her doctor, on her last day of treatment, (only 40 days after diagnosis), saying she couldn’t take it anymore.

    How dramatic.She couldn’t take *not* having cancer. Now we know what she does to those who can take it..

    Clearly, she never encountered real suffering and it made her uncomfortable. She thought she had the lock on suffering, and she discovered she doesn’t.

    There is no moral ambiguity about blogging/tweeting/facebooking your experiences in life, whether they be good or bad. Writers have done this since he written word. The only immorality is reading something that makes you uncomfortable and blaming the writer for your discomfort.

    This has only strengthened my resolve to be unsparing and to go as long as I can, telling the truth of terminal breast cancer. Stage IV breast cancer is not survivable, and it is not pretty. I’ve done my share of lying in shit and gulping pain meds and now I am enjoying the weather and looking forward to what the rest of my life will be. It is not pink. it is not about running races, and it is not about dancing on the way to a mastectomy. It is about ups and down, hope and disappointment, periods of being okay and periods of being very sick. We go into remission sometimes and sometimes it explodes.

    Bill did not even do the most basic research about what the difference between palliative and hospice care is. He didn’t know that Lisa, and I, rail against the warrior metaphors. He didn’t know that she has accepted that she is going to die, but that doesn’t mean you still don’t treat, especially when you have three young children. His entire point was that dying is more courageous than trying to survive.

    My point, and my life, is based on the fact that the two are not mutually exclusive.

    They are an awful couple, shockingly awful. And, Mrs Keller is a hypocrite, having discussed her own condition. And Bill wrote an Op-Ed for the sole purpose of supporting his wife, which would be honorable, except he did zero research and got it ALL wrong.

    It’s heartbreaking, and yet another example that those of us with metastatic breast cancer are not afforded the same respect and understanding as the survivors are – the ones who are able to still dance.

    1. Jay says:

      Thank you. (BTW, you linked me as “Jake”, and thank you, but I am actually “Jay Lake”)

  10. Shorter Bill & Emma Keller: “Some is being -sick- on the Internet!”

    1. Argh. “Someone” for “Some”.

  11. Stevie says:

    Jay
    If it is any consolation I stopped reading the Guardian regularly a few years back because it had become desperate for page hits and had adopted the lowest common denominator in pursuit of page hits.
    They are scrabbling in the gutter; I doubt that they will ever emerge from there…

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