Dying Out Loud Or Not, Or, Saturday Morning at 8:17am


 

Lisa Bonchek Adams Tweets

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.

29 Comments

  • 01/18/14
    11:23 am

    Reply

    Coulda Shoulda Woulda said...

    I haven’t formed any thoughts on this matter – well death yes but this new aspect of our culture no. But I just have to say a very well written piece.

    01/19/14
    4:31 pm
    Lisa said...

    @Coulda Shoulda Woulda, Thank you very much.

  • 01/18/14
    11:26 am

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    hostessofthehumblebungalow said...

    I don’t tweet but I am appalled that some journalists would be so nasty. What happened to freedom of speech…is that not written in the American constitution?
    This woman is brave sharing her fight and her journey with this terrible disease. It is very offensive that people would judge her at this fragile time.
    Such bad manners, they should apologize publicly.

  • 01/18/14
    11:42 am

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    GreenEyedLilo said...

    I still don’t understand why this odious couple thought it was even remotely acceptable to hound and discuss Bonchek Adams. Our society is people who are harming others. Investigate *them*. Discuss *them*. Leave a woman who is sharing her life like any other social media user alone. I’m sure she would prefer it if her life didn’t involve drains for her lungs, but it does, and she has as much right to discuss those things as another user does to show off her new hair color.

    I have absolutely no problem with “deathbed tweeting” (or, more accurately in Bonchek Adams’ case, treatment tweeting.) For one thing, it may help people behind her, who will be in that situation one day. For another, the afterworld is an uncertain and unknowable thing, but writing allows us a degree of immortality. Our words, experiences, and ideas can live on after we do. If Hitchens and Ebert can have that, I see no reason why the rest of us can’t.

  • 01/18/14
    11:54 am

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    Suburban Princess said...

    I hadn’t heard about this until now. Perhaps until now you didn’t know I work in the funeral industry.

    This is a very North American approach to death and its rituals – pretend it’s not happening, deny deny deny, don’t flinch at the funeral, do your crying in private, pretend you are fine. I never get joy out of anyone’s grief, but I do prefer having to pry someone off a casket than to see a room full of loved ones not batting an eye.

    I appreciate when someone is ill and chooses that time to educate people on the illness – how giving and selfless to turn to the world rather than hide at home. Imagine if everyone woman with breast cancer had to go through it alone? With no anecdata? With no support system? Not too long ago they did – and they probably just did what their doctor told them without knowing which questions to ask, which tests to demand, which wigmaker to use.

    Shame on those reporters for having any sort of judgement on how someone chooses to live their days. Trust me…I know…this could be the last day for any of us…I bet they will wish they had spent theirs on more worthwhile activities.

    01/19/14
    4:32 pm
    Lisa said...

    @Suburban Princess, I didn’t know about your work. Thank you for contributing your perspective.

  • 01/18/14
    11:59 am

    Reply

    GSL said...

    Lisa, hadn’t heard about this & Ms McKenna’s summary was quite helpful in catching up. Bill Keller’s reputation has been in decline for quite some time and kudos to the NYT Public Editor (Margaret Sullivan) and The Guardian for removing the Emma Keller (Mrs. Bill) article pending investigation.

    01/19/14
    4:33 pm
    Lisa said...

    @GSL, Yes, agreed, the senior editors have showed good judgment.

  • 01/18/14
    12:14 pm

    Reply

    Stephanie @ La Dolce Vita said...

    I think that no one has the right to judge someone else’s struggle, their illness, and how they get to handle it. Period. I applaud you for sticking up for her. Funny what you wrote about fearing dying – I do too. I’m a pretty big chicken. But I find the older I get, the more I “get” religion, the more I am drawn to it – and that’s from a relatively young mother. I imagine one day, I’ll be that little old lady in the back of the church who knows every word by heart. :)

  • 01/18/14
    12:21 pm

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    Joan Martin said...

    How is this different from people talking about how wonderful their lives are, when we all know we are only seeing the good stuff? That’s why I am not on Facebook. I can’t stand the hypocrisy. Something real, that we are all going to face one day, either with ourselves or people we love, bring it on! We all need to be enlightened.

  • 01/18/14
    1:24 pm

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    cgk said...

    sigh. We’re all dying. Right now. All the time. The vast majority of what we do with our time is just avoidance of the idea of dying. The sooner one comes to grip with it, the better life will be lived. Dying is an important part of living and those that discuss it publicly are doing service to our death adverse culture.

    This is useful -
    http://www.ted.com/talks/stephen_cave_the_4_stories_we_tell_ourselves_about_death.html

    01/19/14
    4:34 pm
    Lisa said...

    @cgk, I will watch that. But I have to catch myself at a perfect time of day.

  • 01/18/14
    1:26 pm

    Reply

    Alicia Saribalis said...

    We are here to teach and to learn. Dying is made less scary by brave souls showing us the way. The spiritual growth of the dying can be a splendor to behold. Great post, Lisa, and thank you.

  • 01/18/14
    1:57 pm

    Reply

    Highland Fashionista said...

    As someone who spends her professional life working in a UK hospital, Keller’s laughably oversimplified assessment of the British approach to death is about as flimsy as his journalism. Using one woman’s approach to her experience with cancer as he harbinger of all that is wrong with modern medicine is disgusting, and completely missing the point. Clearly, he feels that patients should all just quietly retire to a darkened corner and accept their lot. What is missing, BOTH in the US and he UK, is the open dialogue to involve patients in the narrative, to have control over how much gets done and when. To compare his fathers death to this woman’s experience is irrelevant and arrogant.

    01/19/14
    4:34 pm
    Lisa said...

    @Highland Fashionista, Thank you.

  • 01/18/14
    2:17 pm

    Reply

    Laura Tringali Holmes said...

    I’m as enriched by the comments here as I am by the post. Thank you all for making yourselves heard. I’m listening.

    01/19/14
    4:35 pm
    Lisa said...

    @Laura Tringali Holmes, That is almost always the case here. Great readers, great comments.

  • 01/18/14
    2:48 pm

    Reply

    Kathy said...

    I am afraid of many things, but currently death is not among them. That will change, I suspect, when it is imminent. The unknown is always a bit of a threat. Mostly I am curious. I am a woman of faith, and do believe in an afterlife, and am hoping against hope, that there will be a question/answer period, when the great mysteries of life will be made clear. In fact, I have so many questions that I think like a Scheherazade i will be able to delay any inevitable settling of scores against me. However, when offenses are called into account, ingratitude will not be among them. Bless Lisa Bonchek, whether you believe that is the blessing of God, or the blessing of friends, or, as I do, that those are one and the same.

  • 01/18/14
    3:01 pm

    Reply

    Miss Cavendish said...

    Bill Keller is the former executive editor of the NYT. Is Keller taking issue that a woman might use military metaphors? Is she not being feminine enough, (graceful enough), in his mind? His chastising piece was most disappointing.

    01/18/14
    5:54 pm
    RoseG said...

    @Miss Cavendish, I believe the battle field language issue is the the journalist -Mr.Keller- was using it in connection with Ms. Adams case, and she was specifically opposed to it. You can google the language of cancer to read nuanced explanations about the objections to cancer as a battle phrases. Simply put, they suggest that if one had tried harder the battle might have not been lost. That’s horse-poop.

    01/18/14
    5:54 pm
    GSL said...

    @Miss Cavendish, Both Kellers were chastising but it was Bill Keller that had all the battlefield metaphors (Verdun, trench warfare, war of attrition, warrior) in the piece he wrote. Lisa Bonchek Adams (cancer patient) is very much against using military metaphors according to Maryn McKenna’s summary.

  • 01/18/14
    3:14 pm

    Reply

    The Preppy Princess said...

    You capture so well the essence of Bonchek Adams’s journey, and ours individually, in the still-new medium called the internet. One of the problems for me was the almost simultaneous publishing of both Emma Keller’s column and then her husband Bill’s op-ed piece. (Her column for the Guardian remains down on that publication’s website.) It smacks of ganging up on someone, and I don’t like that. Not at all. The fact Emma Keller is a breast cancer survivor herself only adds to the strange nature of this.
    At any rate, another thing to adjust to: our approach to death online.

  • 01/18/14
    6:08 pm

    Reply

    RoseG said...

    Interesting. I’d seen reference to this buy avoided it until now. Although it’s unusual I have known women with DCIS and mastectomies who turned up with metastatic cancer later. The Kellers would do well to be grateful for their good fortune.

    Instead of attacking one woman who is trying to see her children grow to adulthood despite the odds, why do we not question why after years and billions there has been so little towards a cure for cancer? The lifespan for a woman whose cancer returns after initial treatment is little improved over the past years. Let’s skip blaming the victim and ask for progress.

  • 01/18/14
    7:33 pm

    Reply

    joannawnyc said...

    This issue is so difficult. I don’t know specifically what motivated the Kellers (Emma and Bill; I have always rather liked her public discourse but found him a tad staid) but since my father died of mesthelioma at a relatively young age I’ve had trouble with the fight fight fight language of dealing with cancer. I didn’t read the original pieces and I don’t follow Lisa Adams but I thought the comment piece in the New Yorker was quite good: http://www.newyorker.com/online/blogs/culture/2014/01/tweeting-cancer.html

    01/19/14
    4:37 pm
    Lisa said...

    @joannawnyc, I am very sorry for your young loss. Yes, I thought the New Yorker piece was good too.

  • 01/19/14
    12:14 am

    Reply

    sue said...

    I welcome this post, thank you Lisa.

    Suburban Princess said, far more eloquently than I could, a lot of what I think about dying and death. I am at the age (over 65) where I go to a lot of funerals. My husband died less than a year ago and many of my friends are widowed; if anybody can provide help/information/comfort about illness and dying how can that be harmful?

    I don’t know how many times I read funeral notices that say ” died after a long battle with illness …” and I just shudder. It’s not a battle – no amount of positive thinking can stop a vicious disease. And a friend of mine simply died in her sleep – as Suburban Princess says, this could be the last day…Let’s be kind.

    Sue

    01/19/14
    4:38 pm
    Lisa said...

    @sue, I’m sorry for the loss of your husband. I hope every day that the world will get kinder. Seems like something we could manage.

  • 01/19/14
    7:39 am

    Reply

    Flo said...

    What else could we possibly infer than that LBA sought to control her OWN narrative, so she wrote it herself, on her OWN blog, through her own Twitter account, in HER words, eyes wide open, published. When along come the Kellers, members of the new breed of narrative poachers who regard anything published as their’s too. And off they go on LBA — somethinnng must have pissed them off about LBA’s particular narrative frame she put around HER experience of HER own cancer that didn’t jibe with their’s.

    LBA has earned a wide respectful/respected readership, so the Kellers likely have their own “media clicks” in mind since all of LBA’s followers will click these two articles, indeed the vanished article is still receiving clicks [mine included, I'm sorry to say] so even in the article’s absence, the numbers tally upward which, in turn, messages the publisher to extend whateverhernameis’s contract. Hit-a-nerve journalism.

    All best to LBA, and to LPC.

    01/19/14
    4:39 pm
    Lisa said...

    @Flo, I had the suspicion, but no proof so I didn’t want to put it into the post, that Ellen had an emotional response, and posted quickly, and then Bill stepped in to protect his wife.

  • 01/19/14
    3:27 pm

    Reply

    Jane S. said...

    Just wanted to clarify that the College Confidential writer was Latetoschool, not Late for the train. She and Sunriseast were amazing women.

    01/19/14
    4:40 pm
    Lisa said...

    @Jane S., Oh gosh, yes, let me correct that. Late for the train is doing just fine, AFAIK!

  • 01/19/14
    4:05 pm

    Reply

    Kirsty | A Safe Mooring said...

    This really resonates in my particular situation – you’ve given me a lot to read and think about. Thanks for writing about all of this (it had entirely passed me by).

  • 01/19/14
    4:31 pm

    Reply

    Duchesse said...

    How one dies, and what one communicates-if able-is entirely up to that person. Anyone wishing not to witness the communication need just turn away. Anyone wishing to critique, amend or edit the person’s words should, I believe, suspend judgment.

    01/19/14
    4:40 pm
    Lisa said...

    @Duchesse, It does seem like something each person should own, when they can.

  • 01/20/14
    1:35 am

    Reply

    MyEmptyBag said...

    Buf! I’m impressed. I know a boy in a similar situation and I’m really affected. Thank you for telling us the story.

    kisses

    MCarmen
    MyEmptyBag

  • 01/20/14
    3:54 am

    Reply

    Kate said...

    I can’t believe the behaviour of these journalists! How very wrong of them to address this situation the way they did, it’s disgusting!

  • 01/20/14
    7:48 am

    Reply

    Vera said...

    I get tired with the obsession with medical testing. The breast cancer survivor was diagnosed before 40 so wouldn’t have had any tests. Now after constant bombardment with mammograms they are starting with the forced colonoscopies. For many people with anxiety testing for everything basically means zero quality of life, the obsession about the next test and the next would be constant. I would rather find out I had one month to live than go 30 years or more with tests for every possibility.

    On the other hand for an illness like Alzheimer’s which 25% of people have at age 80 and 50% at 90, there is zero routine testing. Why is that? No money to be made that’s all, cognitive testing costs nothing, you can do it yourself online, there is huge money in mammograms and colonoscopies.

    01/20/14
    4:01 pm
    Kathy said...

    @Vera, I so totally agree, Vera. When did it become wise to go looking for trouble? There are innumerable “false positives” with all of these tests. Many people are treated for “suspicious” results, and then those are counted as “cured” when statistics are drawn up. As far as I am concerned the time to see the doctor is when one is symptomatic, although I would not discourage anyone else from having whatever tests they trust. Still I have to ask, since we have known for many years, that radiation causes cancer, why on earth would we subject a part of our body that has known vulnerability to cancer to unnecessary x-rays?

  • 01/20/14
    8:00 am

    Reply

    Cara said...

    A really beautifully written post Lisa, thank you.

  • 01/20/14
    12:53 pm

    Reply

    w b carnochan said...

    From Elderworld –

    1: If you’ve gotten to your eighties, as I luckily have, dying is OK. Definitely not so much if it’s too soon.

    2: The idea of an afterlife produces fear. Too much fire & brimstone.

    3: For secular consolations, read David Hume’s last letters. Really.

    Prof. C.

    01/20/14
    4:11 pm
    Kathy said...

    @w b carnochan, I have to wonder if it is easier to believe in fire and brimstone than it is to believe in paradise?

  • 01/20/14
    7:58 pm

    Reply

    Flo said...

    “The idea of an afterlife produces fear. Too much fire & brimstone.”

    Fear of maggots it is for me.

    ["It is apparent that there is no death.
    But what does that signify?
    Not only under ground are the brains of men
    Eaten by maggots.
    Life in itself is nothing..." EStVM]

    Consider how the biological life cycle of a maggot resembles that of the Biblical Christ, so much so that a scrivener’s error might not be out of the question:

    “Larvae emerge from their eggs and begin feeding. Using their egg site as a source of food, the larvae, which are commonly referred to as maggots, eat for four days in order to store nutrients for metamorphosis.

    Following the larval phase, maggots migrate to find dryer, dark locations within which to pupate. During this phase, the wormlike maggot undergoes a complete transformation, sprouting three pairs of legs and a pair of wings. When the housefly emerges after four days of transformation, it will be fully formed. Within a few hours, females are capable of reproduction.”

    Goes under for 4 days, migration, darkness, time in the desert, emerging with a trinity of leg pairs, celestial wings, experiences transformation, rewarded with ability to generate new life…

    http://www.orkin.com/flies/house-fly/gestation-of-a-house-fly/

    “read David Hume’s last letters”

    And might you suggest specific texts and lead the discussion?

    01/21/14
    7:44 am
    Lisa said...

    I’ll put in a request…

  • 01/22/14
    11:06 am

    Reply

    Philippa said...

    Yes

  • 03/23/14
    9:45 pm

    Reply

    Ann said...

    I too have been thinking more about death, having reached retirement age, having lost too very beloved parents by marriage. I have been inspired emotionally, intellectually and spiritually by these words of Zora Neale Hurston:

    ” Life, as it is, does not frighten me, since I have made my peace with the universe as I find it, and bow to its laws. The ever-sleepless sea in its bed, crying out “how long?” to Time; million-formed and never motionless flame; the contemplation of these two aspects alone, affords me sufficient food for ten spans of my expected lifetime.

    It seems to me that organized creeds are collections of words around a wish. I feel no need for such. However, I would not, by word or deed, attempt to deprive another of the consolation it affords.

    It is simply not for me. Somebody else may have my rapturous glance at the archangels. The springing of the yellow line of morning out of the misty deep of dawn, is glory enough for me.

    I know that nothing is destructible; things merely change forms. When the consciousness we know as life ceases, I know that I shall still be part and parcel of the world. I was a part before the sun rolled into shape and burst forth in the glory of change. I was, when the earth was hurled out from its fiery rim. I shall return with the earth to Father Sun, and still exist in substance when the sun has lost its fire, and disintegrated into infinity to perhaps become a part of the whirling rubble of space. Why fear? The stuff of my being is matter, ever changing, ever moving, but never lost; so what need of denominations and creeds to deny myself the comfort of all my fellow men? The wide belt of the universe has no need for finger-rings. I am one with the infinite and need no other assurance.

    Zora Neale Hurston

    03/24/14
    11:13 am
    Lisa said...

    That is beautiful. Thank you.

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