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NYTimes honcho Bill Keller and NYTimes honcho spouse Emma Keller.
What the fuck is wrong with these people. No, wait. Nothing is wrong with them. They want us little people to “accept an inevitable fate with grace and courage”. As elites always do. Works out fine for them.
For the record, if I ever get a terminal diagnosis (which could happen next Tuesday, or thirty years from now), I intend to be all about the extreme measures and the "fierce and very public cage fight with death." Bill Keller can blow me.
Wow, it's unethical to talk about your cancer treatment, and lacks "grace and courage" to pursue aggressive medical treatment. Who knew?
Bleeping infixed expletive! (I just read the articles.)
It didn't occur to the Kellers for one second that this isn't their call. Or that Lisa Bonchek Adams's extended process of dying, and the way she's chosen to deal with it, is not theirs to casually commandeer for a couple of shallow, thoughtless pieces of journalistic thumbsucking.
If you think I'm overreacting, check out the update at the end of Emma Keller's piece in the Guardian.
The Kellers have made their priorities and values clear:
It's proper for them to write about those of us who are dying.
It's unforgiveable that we should speak for ourselves.
It is nothing short of tragic that the Kellers were forced to read these tweets, possibly by means of a computer virus that inserted them into their eBooks and sent them to their phones as text messages. Otherwise, they could just have clicked on by to their favorite purveyors of cat pictures.
However, at least now they've adequately punished this dying woman with the attention of every troll and tyrant of the internet, who are no doubt filling her @-replies and her last days with mysoginistic crap. I wonder whether the death tweets outnumber the rape threats? Has the obsessive digging into her past begun? The "disproving" her illness? The victim-blaming? What a lovely distraction for her, wrestling with Twitter's wholly inadequate blocking mechanisms in between bouts of pain.
And it was all a surprise, because they didn't warn her they would be writing about her on those two very public fora.
Oh, wait, I forgot something:
We little people are also permitted to tug our forelocks in their presence and encouraged to utter some kind of homespun wisdom that they can spin into gold in their articles.
(We're raw materials, you see. And should shut up and stop struggling.)
I disagree with their conclusions and I think that using a real woman (without her consent or agreement) as their example was all manner of wrong. I keep starting to describe the ways it was wrong, only to find myself drowning in an infinite list.
At the same time, societal discussion about end-of-life ethics is so important. I really wish they had done better - they had an opportunity to do some good and they botched it.
It's crap like this where I want to get a really big stick with "It's Not About You" engraved down its length and club people over the head.
I'd never heard of the Kellers before and agree that passing any sort of judgment on how an individual chooses to approach their cancer is crass and so they really shouldn't have written these pieces. However, I'm slightly puzzled by the characterization that they want us little people to die politely. Given what Bill Keller wrote about his father-in-law, Emma Keller's father, that would imply he sees him as "little people" too.
I'm going to disagree here. Bill Keller really does say, in the article, that it's her call. He'd make a different one, and says so.
It's really important to make both choices be seen as reasonable. For an example -- Terry Pratchett's desire to die with dignity, when he chooses, is really important to me.
Some people choose to "rage, rage against the dying of the light" -- others don't. Bill Keller's article (I haven't read his wife's one, yet) doesn't say it's wrong to choose -- it says that he'd probably choose something different.
Is there a religious component showing up here? i ask, as someone who isn't (conventionally) religious. I intend that as a real question, and not as a rhetorical device.
elise @6-- Looking outside -- we're all just raw materials in someone else's life. Each of us is the focus in our own life. If you want to use how I've lived to help yourself live -- bully for you, and I'm really glad you've chosen that. That's true whether you're grabbing the positive or the negative aspects of how I'm living (and, yeah, both positive and negative aspects are there for the choosing).
Tom@10: Bill Keller really does say, in the article, that it's her call. He'd make a different one, and says so.
First, as much as Keller may say that, he also undercuts if by questioning her choice: "as cancer experts I consulted pointed out, Adams is the standard-bearer for an approach to cancer that honors the warrior, that may raise false hopes, and that, implicitly, seems to peg patients like my father-in-law as failures."
Anybody who blames people who die of cancer as failures for not fighting hard enough, or for not fighting at all, needs an immediate booster shot of basic human decency. But to say that Adams's choice to fight is somehow bad because not everybody fights? What.
Second, and more importantly, why say anything at all? The Kellers have a massive publicity and media engine at their disposal. They've made this a Story. Whereas, up until this, Adams's feed was, in Keller's own words, the province of "[a] rapt audience of several thousand."
What the Kellers are saying is roughly this: "Hey, this woman talks constantly to a few thousand followers about something I don't like! Let's tell millions of people about it so they can and pass judgment on her, implicitly making her personal choices a matter of public opinion! And let's not tell her, because she must be OK with it, or she wouldn't have committed the sin of publicly existing in a manner we don't like!"
Having known several people who have died of cancer, I'd just like to say this: the Kellers can go fuck themselves. And what abi says about Twitter is only part of it.
Courage does vary in kind, and all sorts of choices are courageous. Where do they get off saying we even have to be courageous? Or judging...
As they say nowadays, I can't even.
Tom @ 10
Yeah, I thought about that too. Both my parents died in hospice at the end of long cancer battles. I've find myself coming back again and again to the question of agency - so many things are out of control by the time you're nearing death that I'm reluctant to further impair informed choice and independence.
Thanks for bringing it up; I was having trouble finding the right words.
Mr Keller says, "Adams is the standard-bearer for an approach to cancer that honors the warrior, that may raise false hopes, and that, implicitly, seems to peg patients like my father-in-law as failures."
So he wrote an essay to peg back?
The real judgemental nastiness comes from his wife. "Forget funeral selfies. What are the ethics of tweeting a terminal illness?"
Her judgementalism is actually a stage for her to dance upon, though, lest we forget it's all about her. "I couldn't stop reading – I even set up a dedicated @adamslisa column in Tweetdeck – but I felt embarrassed at my voyeurism. Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies? Why am I so obsessed?"
Poor, poor Mrs Keller. How dare that dying person make you embarrassed by unintentionally providing an attachment point for your voyeurism, your obsession? Oh, and for selling an article about it, too? Let's not forget that part.
Tom @ 10:
There's no religious component for me, but rather a dislike of that kind of nasty "viewing with alarm" article (with its little grace notes about compulsive tweeting and TMI) that is the exact opposite of honoring both choices.
I'm all for honoring both choices. I don't think that's what they did, by a long shot. I think they tore her down and got paid for doing it.
And she "regrets" not telling Adams she was writing an article targeting her? How nice for Adams. I'm sure Keller's regrets make a big difference to her as she's fielding a Twitter backlash from her cancer sickbed.
Stupid asshole piece of shit. Tempted to call down seven faces of Twitter hell on HER ID. But it still wouldn't make the point, because SHE's not a terminal cancer patient.
Xopher @ 16
To the limited extent I can hack my way around the twittyverse, I only saw criticisms of the Kellers. Am I overlooking something obvious?
I really want to tell Guardian's Keller that her journalistic greed, selfishness, and utter lack of compassion sicken me, but they've closed comments on her reprehensible drivel.
I strongly suspect the Kellers have, or have the resources to hire, a PA to screen their twitter streams. I equally suspect that Adams does not.
But yes, not contacting the target of your big-platform takedown before hammer them with the keyboards of many thousands of readers is almost unbelievably slimy. The kindest explanation I can think of is that Keller is projecting a lot of her feelings about the loss of her father onto Adams, and that that is blinding her to the reality of her actions.
In which case, someone at the Guardian should have made sure that particular communiation happened before publication. That's another level of failure.
None of which Adams should have to be carrying right now.
I don't see anything public. But that doesn't mean it isn't happening in places I haven't seen. Because I also know Twitter and trolls.
When did The Guardian become such a shitty little rag? Or has it always been that way? (I do remember other stupid articles of theirs—the one about the "neighborhood" of Brooklyn stands out—but not one like this, targeting a dying person who never did them any wrong.)
The NY Times has been a snooty elitist publication of the 1% for a long time, so that's no surprise.
Will @12 -- "Why say anything at all?" Because, perhaps, death is an important issue for a lot of people. And it's really important to make sure that various attitudes about it get some attention.
The Kellers have used their bully pulpit to get people talking. They've done so by taking a specific stand (not one I entirely agree with). i think it's good that we're talking about it.
And yes, I have been there when people died who didn't want to, and when they did. Neither was fun.
Thank you, elise, for responding to the religion question. I agree that the "viewing with alarm" trope is a bit overused here; and I do think that it's not terribly inappropriate for Mr. Keller to use it. Death is a big issue. There's room (IMO) for people to mis-step around it. I see both of the Kellers trying to figure out how it's best to cry about death -- they aren't reaching the conclusions I'd reach, but they're trying. And I'm on the side of "trying".
It's entirely possible to write a "view with alarm" post that uses a sufficiently wide variety of examples that all the attention (and all that follows attention, on the internet) is not concentrated on one person.
It's an important discussion. It's not a useful way of having it. The risk and impact of the collateral damage is not immaterial.
And you don't include someone's tweets in an article unless you intend to make them a target...or are certain they already are.
Tom, I believe one of the great questions of our age is whether it's legitimate for others to use our lives as mere raw material, or for us to use others' lives that way.
I say no.
And Tom, you perennially kind and decent guy? I'm pretty sure you're giving the Kellers more credit than they've got coming.
Forgiving the Kellers for being horrible people is the right thing to do. But it isn't my place to do that.
So, allow me to say I'm saddened that I lived in the same city with these disturbing creatures, and I'm pleased that I don't anymore.
For mysterious reasons, my anticonvulsant doesn't work unless I have a decent amount of aspartame in my system. (Try to convince people that diet soda is a medical necessity.) I *once* posted this on my Twitter and got a flood of people preaching about aspartame and seizure disorders and whatnot. I was doing it wrong and it was all my fault because of so many different reasons I lost track. That is why my Twitter feed is private now. It makes me sick to think of how much of that arrogant, misinformed, and cruel crap she has to deal with now.
Shorter Keller: If it isn't the choice I'd make about dying it should not be made? Is that it? Seems awfully snooty to me.
What in the world. My grandfather chose hospice care and pain management over aggressive treatment when he was diagnosed with a brain tumor. Somehow I can believe that that was the right decision for him, while still believing that for another person in another situation, aggressive cancer treatment is the right decision. Maybe it's because I believe in people's right to make their own medical decisions? (And their own social media decisions?)
This is just gross. No, they're not explicitly trashing her -- just passive-aggressively implying that she's spending too much money on her treatment and questioning the "ethics" of tweeting what appears to be nothing but the truth about her own life. (They're not even claiming she's lying -- just that somehow her tweeting is in bad taste or something?)
Tom Whitmore, I can't even begin to figure out what your "religious component" question was about. I have nothing against taking a attitude toward impending death different from that chosen by Lisa Bonchek Adams. My issue is entirely with the Kellers' behavior, and their mindblowing heedlessness of its consequences. It's a nearly perfectly illustration of the vacuous, narcissistic irresponsibility endemic among our present-day media elite.
That said, I'll also observe to Xopher that the Guardian has always published a huge range of material, even more so now that they're pursuing an aggressive web strategy. Every so often, something they publish is truly dreadful. They're still one of the most important papers in the English language, and it would be a serious loss to everything you and I value if they were to go away. Which could happen within a few years if some coin-flips go the wrong way.
Elise, #7: We're raw materials, you see. And should shut up and stop struggling.
Why do they say "human resources", if we're not meant to strip-mine them?
Xeni Jardin, no stranger to cancer, tweeted a fair amount about this last night. Storified, with prefatory context, at a single link here.
Tom Whitmore, I hope you read it; it might give you some insight into what about this makes some of us so angry.
Once again Bill Keller manages to attain the level of Poster Child for Moral Imbecility. (Hey, remember Judith Miller, anyone?)
Yes, death, terminal illness, and end of life choices are important issues and we should talk about them. The way Mr. Keller and Mrs. Keller have chosen to do so is not the right way. I wouldn't even give them credit for getting it started, because there have been plenty of others who have made an effort to do so, in more constructive ways.
What these look like to me are print versions of the Tone Argument: "Of course, this is an issue we should all pay attention to. It deserves serious consideration. But must you be so angry/so crude/so detailed/so persistent/so disrespectful/so free with awkward* personal details/so [x]...?"
I'm not surprised the Guardian closed comments, because the intertubes were probably on fire there for a bit. I suspect they didn't do much to change the piece because it's providing lots of lovely clickbait. (Yes, I am a wee bit cynical about people's motivations.) I also wonder if Mr. Keller didn't write his piece to try and preempt comment on his wife's; I can't believe he was so completely blind as to not guess it was going to get a hot response. Also, grief counseling can be very helpful to many people, and perhaps it's time to talk to a professional instead of resorting to stunts like this to get some attention for your unresolved issues, what with the invasion of privacy and the pearl-clutching and all.
Yes, I've been though this with my father, years ago. It sucks. It is not fun. It is sad. Dragging someone else's laundry out and asking if they use the right detergent and cleaning aids is not the cure for those feelings. Mrs. Keller could have written her piece and referred only obliquely to Ms. Adams in ways that did not invade her privacy. She could have used additional examples showing a range of reactions to a terminal diagnosis. But she didn't, because it's all about her, and no one else has feelings that matter.
The Kellers can stop with the efforts to bestride the narrow world like a Colossus and allow we petty folk to benefit from their immenese insight.
*Am I the only person here who finds the word awkward a little awkward-looking when they write it?
I think the line between acceptable and unacceptable is much messier than just whether we use others' life experiences and narratives as material for our writing. I can think of many blog posts that Patrick, Teresa and I have written here on Making Light that do that very thing. I can point to plenty of comments, both here and elseNet, from other people here that do the same.
And yet there is a difference, and I think parsing that difference is valuable. But it's a more complicated difference. Some thoughts:
* Identifiability/isolation: Sometimes one can write these things without a name or link, or by changing details, or by using a group of people rather than one person to spread the impact.
* Punching down: there's a heck of a difference between two major newspapers and a Twitter account with a few thousand followers.
* Consequences: things that make it likely that the internet will land on someone's head should be given a lot of thought and care.
* Death: some matters need more consideration than others; surely how we deal with death should be given more space than, say, the serial comma.
* Accuracy: the NYT story at least was factually wrong, and wrong in some of its implications as well. Not cool.
* Criticism vs. praise: I think it genuinely is more acceptable to praise someone than to cut them down. (However, see "internet landing on head" above; not everyone, when their attention is called to a matter, discuss it in the style of the original article.)
I'm open to correction on any or all of these points.
Also: given the well-established propensity of the internet to be shittier to women than to men, and the related tendency of our culture to believe that women should STFU about everything forever, I think it behooves the media to be extra-cautious about drawing that sort of attention to a woman, particularly a woman in an especially vulnerable situation--such as, oh, for example NOT BEING ABLE TO MOVE AROUND FREELY.
Shorter Emma Keller: “It’s disgusting that someone would tweet about her cancer treatment in such gruesome detail to the public! Here, let me rebroadcast some of these tweets to an even larger segment of the public, so you can see how disgusting such behavior is!”
I expect that Jay Lake would find Keller very amusing. Not.
Reading the two articles in question, I understand them to be saying "how dare you make me aware of the very unpleasant details of your dying. You're supposed to suffer nobly in silence, or with inspiring aphorisms, and expire gracefully."
T @25/26 -- yes, I probably am giving them more kindness than they deserve. On the whole, I'd rather do that than the opposite. And I hope that you've noticed the times when I've said "You're right" when you've pointed that out.
Both Keller pieces go on at great length to say "This makes me uncomfortable." I think we're better off looking at why this makes some people uncomfortable than pillorying the messengers. I'm sure the Kellers speak for a lot of people who are discomfited by folks like Jay Lake. And we're in a world where both sides of that discomfort get a certain amount of publicity.
I think they really are saying "This makes me uncomfortable," rather than "Nobody should ever say this." Which is why I'm giving them the benefit of the doubt.
P, the "religious component" question is (at this point) one where I think we'd need to sit down together to work out why I asked it; there's a lot of metadata that I'm certain I can't bring out in type, online, because I'm not that good a writer. Sometime when we're together, okay?
Right now, if I saw Mr. Keller in the flesh, I would punch him -- that dig about "amenities like Caring Canines" and the fact that Sloan-Kettering didn't disclose the cost of those so-called amenities.
For those who don't know Caring Canines is an all volunteer Therapy Dog organization and does not charge for the visits it makes to facilities (hospitals, skilled care facilities, hospice, etc.).
What the hell is the matter with this man that he chooses to pick on a cancer patient, the facility that is treating her, and therapy dogs?
Silence = Death, motherfucker.
Interesting. I didn't read them that way, and my husband died of prostate cancer after pursuing multiple courses of treatment at Memorial Sloan-Kettering. His mother, on the other hand, died eight days after a massive stroke, having received terrific palliative care (just one little glitch) at London University Hospital in London, Ontario. I didn't read it as criticising the decision to pursue vigorous treatment, but rather criticising the perceived assumption that that is always the right thing to do. People shouldn't be pressured either way.
After reading all the comments here, though, I understand much better what the objections are, especially about drawing massive attention to a single person. It didn't occur to me what that would mean to the person in question, but it certainly should have occurred to the writers.
Patrick 31: OK, so they haven't "become a shitty little rag" as I said before. And I've also been impressed with some of their reportage. Looks more like they've always had some stupid stuff, but haven't given up on the good reportage either.
I would submit that if this kind of thing becomes typical of them, we WILL have lost the Guardian as we value it.
Is it just the nature of my Twitter Followees, or is the internet falling on their head about this? Because it should.
Ok -- I just tried to reach Mrs. Keller's article, and instead got a page that says they've taken it down...
Lori 44: Just to be explicit, it says
This post has been deleted with the agreement of the subject because it is inconsistent with the Guardian editorial code.
Note: the agreement of the subject, not the author. That might just be inaccurate phrasing, but on the face of it it means they contacted Adams and said something like "We want to take this down, but we won't if you'd rather we left it up."
I'm (almost) sure there's a set of screen caps somewhere. But at least it's not out there still doing harm.
"...that may raise false hopes, and that, implicitly, seems to peg patients like my father-in-law as failures."
So it's all about you and your family? Are we seeing the key to all this right here in this very... personal sentence?
elise @ 15
The real judgemental nastiness comes from his wife. "Forget funeral selfies. What are the ethics of tweeting a terminal illness?"
I notice that you're quoting the headline. Does Emma Keller get to write her own headlines, or did someone else write the headline? (In newspaper writing, the writer is frequently not responsible for the headline.) In other words, is Keller herself to blame for this very ugly comparison to "funeral selfies?" If Keller didn't write the headline, then to some extent the whole backlash against her is unjust, because the headline adds enormously to the unpleasantness of the whole piece and decidely changes the tone of what was published beneath the headline. From my POV the headline looks like a standard "drag the reader in by whatever means necessary" British newspaper headline of the sort I routinely ignore, so I suspect that she didn't write it, but I could be wrong, because I don't know how much power she has at the Guardian.
Unfortunately, The Guardian took the editorial down between the time I first read it and my attempt to reopen it a few minutes later, so I can't comment much on the actual content. My memory of the piece is that it was a standard sort of "think piece" and while I didn't agree I wasn't particularly offended. I say this as someone who's mother died of colon cancer after choosing not to attempt heroic measures.
Ultimately, I find that Bill Keller's piece is pissing me off and his wife's piece isn't. Ms. Keller seemed like she was at least trying, albeit in a clumsly and tone-deaf fashion, to broach some intelligent questions about the idea of being very, very open about one's medical process. She didn't do a very good job of the whole thing, but it didn't make me angry. (If I learned that she'd written the headline I'd feel very differently about the piece, but I doubt she did.)
On the other hand, Bill Keller's piece seemed very judgemental and it was clearly about his very, very important emotions and issues, without much reference to anyone else's feelings and ideas, or whether cancer blogging ultimately has a worthwhile purpose.
Alex R.: Memory suggests that the title of Ms. Keller's piece came from a line towards the end of the artcle. So I think she's on the hook for the phrasing. Was this thing up long enough for the Wayback Machine to have caught it?
Jacque @ 48
Or maybe someone saved a copy. Definitely worth looking into.
I'm afraid that the most appropriate replies to the Kellers are unfit to print because they would naturally involve not only defamation but threats. And even so they would be more fit than the Kellers' original writing.
According to Xeni Jardin on Twitter, the Guardian took Emma Keller's column down because it came to their attention that Keller had quoted private communications from Lisa Bonchek Adams without the latter's permission.
Say what you will about the Guardian, but they tend to be pretty quick to get their legal act in shape. Between the atrocities of British libel law and the fact that they're not infrequently the target of non-trivial government harassment, they have to be.
There's an saved version of the Guardian article here.
Incidentally, Adam Weinstein, writing at Gawker, is quite good on this story.
I see one private communication in the article, that being the DM toward the end. Which is enough, I guess, but it may also mean that if EK is sufficiently impervious to the chaff coming her way, she could easily edit it, removing the offending quote, and they'd (theoretically) put it back up.
I doubt they would, in practice. The quote is far from the only offending thing there.
There's yet another issue that nobody else has covered. Mr. Keller wrongly assumes that there's a dichotomy between palliative care and curative care - that one cannot get both.
This is dangerously wrong, especially in an op-ed. Palliative care is available to cancer patients undergoing treatments with curative intent. Anti-emetics, lotions, music therapy, pet therapy (mentioned with such incorrect scorn in Mr. Keller's piece), red blood cell stimulators, white blood cell stimulators, pain medications, meditation, and yes, diaries, all can be part of palliative care that take place alongside curative care. Further, many of the studies on the advantages of palliative care are on palliative care as an addition to, rather than an alternative to palliative care. Amazingly, Mr. Keller, palliative care as an addition to curative care also increases effectiveness and reduces costs of treatments.
If this insensitive and wrong-headed editorial discourages one person from seeking palliative care by fostering the assumption that it replaces curative care, Mr. Keller has done wrong not only to Ms. Adams with his condescending attack, but also done wrong to many current and future cancer patients.
Disclaimer: diagnosed with breast cancer at age 37, had very aggressive curative and palliative care, has watched more than one friend live under strong treatments, had watched more than one friend die under strong treatments, has had a father die after deciding no more treatment (after four different regimens). So what? Attacking someone for their choices with a condescending, wrong-headed, factually wrong editorial is wrong.
Dylan Thomas tells us:
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.
Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.
Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.
Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.
And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
But the Kellers add, "But for god's sake, don't talk about it on social media."
Apparently I was wrong, the "forget funeral selfies" was part of Emma's text. I'd still have to say that I found her husband's efforts to be more obnoxious, but Emma's phrase about selfies definitely goes over the line.
I think what bothers me most about Emma's take on things is that she confuses ethics with her own emotional reaction, but can't summon the self-analysis to notice the issue. Emma writes, "I couldn't stop reading – I even set up a dedicated @adamslisa column in Tweetdeck – but I felt embarrassed at my voyeurism. Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies? Why am I so obsessed?" Emma doesn't realize that she's telling us a great deal about Emma Keller and very little about Lisa Adams...
As the Purple Sage said, "Let these two asses be set to grinding corn."
My read of the situation as a whole is that Emma Keller had a strong emotional reaction to Adams' writing, possibly because of previous experiences around cancer, possibly just because people do have emotional reactions. She dressed it up as something more intellectually defensible than it was, wrote it, and sold it.
(The fact that she did so without telling Adams and quoting a DM adds to my impression of "emotion getting in the way of judgment.")
Then when the blowback started and Bill Keller stepped in and took her side, he may have done so more out of spousal defensiveness than anything else.
This doesn't excuse their behavior—having the power and social position to make your dumbshit heart-rule-head decisions on a national stage implies having the responsibility to make sure you don't do that very thing.
But it does mean that Bill Keller may very well stand behind his words long after the entire situation has rendered them nonsensical. Because if I'm right, it's not about truth. It's about emotion.
Perhaps Bill's piece is yet another reaction to Obamacare? Wouldn't want everyone to think they should actually *use* full coverage.
abi @ 58
She dressed it up as something more intellectually defensible than it was, wrote it, and sold it.
I have a medical story I've been following, much as the Keller's are following the story of Lisa Adams. All the people involved are strangers to me and live some multiple of a thousand miles away from my house. I google for more news a couple times a day. I compulsively read and sometimes reread new stories. There's a legal drama tied into the medical drama, and I sometimes think about what I'd do if I was in the place of the people who are experiencing this story I read about so obsessively...
But I'm very aware that all the thought and time I put in following and thinking about the story is all about me! It relates to my psychology and the buttons the story pushes for me. I wouldn't dream of commenting publicly on the issue or suggesting that the real people involved in the story use my thoughts and ideas as a guide for their behaviour. If I did so I would feel arrogant and clueless and horrible...
'Nuf said, I think.
As a patient living with metastatic lung cancer, Keller's NYT article is abhorrent. The bloggers, tweeters and online forum participants like Lisa Adams who share their cancer journey with clarity and grace have helped many people (including me) cope with a devastating illness and find strength to pursue whichever treatment path we think is best for our situation. As Lisa has said, each patient must make their own treatment choices. Keller compared treatment chosen by his elderly father-in-law (hospice) to that of a mother with three children (clinical trials). You'd think a former NYT executive editor could at least get the number of Adams' kids correct (he said she had two).
Keller also misrepresents palliative care as end-of-life care, when it is actually available to cancer patients at any time after diagnosis -- even during active treatment. This will make it even more difficult for some cancer patients in active treatment to accept palliative care to control their pain and other symptoms.
Keller's article should be retracted.
What I find interesting is that the Guardian has taken down the post (it now just says "This post has been removed pending investigation."), but left up the comments (including responses from the author).
Tom Whitmore @40: I think they really are saying "This makes me uncomfortable," rather than "Nobody should ever say this." Which is why I'm giving them the benefit of the doubt.
It very clearly makes them uncomfortable, yes. But there are ways of talking about discomfort, and I think the Kellers do very much come across as conflating actions that make them uncomfortable with actions that are unethical. And I think to some extent that's the authors' intended message, because a nontrivial portion of the Kellers' writing is directly and unabashedly critical of Adams's choices. Yes, I absolutely think they are explicitly saying, if not "Nobody should ever say/do this," then certainly "Lisa Adams should never have said/done this."
If it really was just all about their discomfort, they needn't have criticized Adams's choices at all. Mrs. Keller could very well have explored that dichotomy between her discomfort at being a "voyeur" and her seeming inability to quit reading. She could have ruminated on that very human tendency to keep watching the things we disapprove of. She could have salted the piece liberally with acknowledgements that this is about her discomfort, not about Adams's choices. If she was going to make it all about herself, then, hell! Make it all about herself. Make it not about evaluating Adams's choices, or even about Adams at all, but about an idiosynchratic emotional space Mrs. Keller is experiencing and finding noteworthy, for which Adams's twitter feed was simply the catalyst.
"Isn't this TMI? Shouldn't there be boundaries?" she writes (I'm paraphrasing); and she doesn't follow up with any acknowledgement that in fact the "boundary" she seeks is within her own grasp. She could just stop reading if she's so damn uncomfortable about it. That she doesn't acknowledge that at all strongly implies, to me, that Mrs. Keller believes that setting boundaries to prevent Mrs. Keller's discomfort at "TMI" is Adams's responsibility. That if Mrs. Keller is uncomfortable, Adams should restrict her public existence, rather than Keller restrict her own reading choices.
And that's why the Kellers get much less benefit of the doubt from me.
Janet Freeman-Daily @61 " to that of a mother with three children (clinical trials)".
Clinical trials. Criticizing her for volunteering for clinical trial. That is particularly foul. It also hits close to home personally (a brother) or I would not have stepped in.
If Miz Keller is so bloody uncomfortable reading about Adams' problems, no one was holding a gun to her head and making her read Adams' posts -- all she had to do was stop reading, following, or whatever the heck you do on Twitter.
The Kellers' actions strike me as being much as if I were to Google my crush object, realize that I felt kind of uncomfortable with how I am looking at her web pages, poetry, etc. and then instead of simply not spying on her and closing the browser, or questioning my own choices, or even confessing my mixed feelings to her, to instead write an article for the international news media about how immoral and shameless it is for her to write and publish poetry. Because she made me feel voyeuristic and ashamed of myself! Multiply that by 10 for playing this twisted scenario out against someone who's seriously ill and in danger of her life.
Megan Garber chimes in.
Nicole @63: Very strong agreement with "That's why we disagree." I honor your thought, continue to disagree, and hope that we'll continue to be able to agree and disagree in the future. While I don't always agree with your wisdom, I recognize it. I may come to agree with it as we move forward.
The big irony, of course, is that the elites don't necessarily fare any better in a run-in with the big-C than the rest of us do.
(Case in point: Steve Jobs, multi-billionaire, one of the five most important American entrepreneurs of the 20th century. When his liver was failing thanks to pancreatic cancer, his riches allowed him to keep a bizjet on standby with a flight crew in the cockpit, ready to scramble and race him to a hospital where a histocompatible donor organ had become available in one of the three states he registered in. He did this for three months. (Donor livers are only viable for a few hours, hence the extraordinary set-up: normal people only get the opportunity to register in one US state.) Cost: probably north of half a million bucks, possibly more than that -- $40M Gulfstream jets and their flight crews aren't cheap to run. But it didn't change the final outcome. It just kicked the can down the road, buy him at best something like 18 months, and probably less. Because once your basic healthcare is covered, it's not as if there's a cure for cancer that $10M will buy you and $100K won't. Death isn't necessarily democratic, but it doesn't respect your bank balance.)
The bell tolls for all of us, eventually. Anyone so narcissistic that they don't recognize this, that they think there's a law for the little people and a different rule for their own kind, is clearly too stupid to be worth listening to.
I think newspapers and later tv and radio news programs have been in a position to do the equivalent of making the internet fall on someone's head for years now, and they have done so in a somewhat random way, sometimes wrecking someone's life for no good reason, sometimes raising someone to undeserved prominence. What has changed is that the targets and millions of other people are in a much better position to push back on this stuff. That is a very good thing.
Keller's article should be retracted.
Janet, I strongly disagree. Everybody's responses are the reasons why. It's a stupid article (the one I've read), but I'm gratified that I read several of the responses.
Death can make people very stupid.
Previously on Making Light there have been highlighted the bad behaviour of people getting married and people criticising parenting. I'm drawn to the theory that the bad behaviour stems from these being important to the person; that their wedding or child is close to the centre of their identity. Therefore if you do it differently, then clearly you are wrong and I am right. (Because if you are right and I'm wrong then my entire self is wrong*).
Where this comes in here: Lisa Bonchek Adams has chosen one way to deal with her situation. Emma Keller's father chose a different way to deal with his situation. I suspect that Emma Keller really wants her father to have made the right choice, because that's pretty damn important to her**.
Her carelessness in using her prominent media platform to criticise a cancer patient for doing what they choose to do is somewhat less understandable or forgivable.
* Failing, of course, to recognise that there may be more than one valid approach.
** This may contribute to why she is both uncomfortable and unable to look away.
Scraps 71: I guess on the web, 'retracted' and 'removed' are the same thing, but the Times owes an apology for publishing it, which is what 'retracted' meant in the old days.
Charlie Stross @ 69: True but not the whole story.
I'd been thinking earlier during this thread that Warren Zevon wasn't quite right about "the rich folk suffer like the rest of us". So I know--know of, really--two cases of terminal cancer early in this decade which illustrate that.
One was a woman named Diane Blair. She was a professor of political science at UA-Fayetteville, a board member of the Corporation for Public Broadcasting, and the wife of the general counsel for Tyson Foods, Jim Blair. They're old buddies with the Clintons, who left whatever high place they were occupying at the time to nurse her. I'm quite sure she died in a bed with clean sheets, paid caregivers, and proper medication. Dead is dead, sure, but dying varies.
The other was my best friend's wife. She cleaned commercial buildings for a living. Her friends nursed her. I wasn't living in town, but when I visited near the end, I took my shift of feeding her, or trying to, cottage cheese as she lay on their ratty old couch. She was poorly medicated. (Her doctor had misdiagnosed--no, missed diagnosing--her. Probably he thought she was seeking pain pills.) The end wasn't pretty. She probably had cottage cheese in her hair.
So yeah, the rich folk die like the rest of us, but on average, they suffer a lot less in the process.
(She lasted nearly five years after finally being diagnosed with stage four breast cancer. It'd spread to her lymph nodes and her bones--her hip broke and she fell as she was walking through a Wal-Mart parking lot is how they finally realized she had cancer--and yet she lasted through five! rounds! of chemo. That suggests to me that if she'd had a doctor who valued her like I bet Diane Blair's doctor valued her and diagnosed her correctly, she'd've lived.
(And of course the Blairs didn't have to sell nearly everything they owned in the process. But I digress.)
I hate to be that pedantic guy, but it seems to me that our elites don't much care whether we are polite or impolite when conducting our suffering and dying business— what they want is for us to do it somewhere they are unlikely to notice it unless they go expressly looking for it. In fact, to the extent they care about it at all, one rather suspects they would much prefer our suffering and dying invariably to be as vulgar and horrific as possible, just as long as they can decide on their own terms where and when to enjoy the spectacle.
Actually, Charlie, death is the ultimate democrat and the ultimate egalitarian. It arrives once per customer, and there are absolutely no credible records of it every having been put off. Delayed, yes. But never cancelled.
Pain is much more susceptible to bribery.
I'm going to go on a tangent here. Something the one Keller didn't mention in his piece (and I don't know about the other as I didn't see here), and which has only been lightly touched on here, is the difference between dying when you are old and your children are grown, and dying when you are young and your children are children. It's not necessarily more dignified to go easy when you have children.
Jay Lake's made this point repeatedly: he has a daughter to live for. Trying to get as much good time as you can get, to be there while they are young, is a reasonable thing to do. For one thing, your children see you fighting to stay with them. They can tell that you value them and don't want to leave them.
Recording the struggle is something you can be doing for them too. They can see this record when you are gone, and it can mean a lot to them.
When my father died, he was old enough that he spent his last weeks making a compilation of songs to express his gratitude for having been here. When my friend died in his thirties, he was young enough, and his children young enough, that he fought until there were no weapons left.
Bill Keller writes with the same careful cluelessness that is the essential style of David Brooks. For a similar Keller experience, watch the Keller interview on Wikileaks' "Mediastan".
See http://youtu.be/kBp8dwihuj4 , about 1:20:00 into the video.
The Beeb's story about l'affaire Keller (http://www.bbc.co.uk/news/blogs-echochambers-25723276) notes that Emma Keller had a double mastectomy.
There's an aspect to the way Keller is judging Adams that reminds me of the mommy wars. The way that a "live and let live" or in this case "die and let die" approach never occurs to to Keller. He can't let Adams deal with cancer in her way, not if it differs from the way his father-in-law chose.
A kind of,
"If we're doing things differently, which one of us is wrong? Must be the other person! Quickly, condemn them before introspection happens!"
It's completely lacking in compassion. He's not even considering Adams for who she is, he's considering how she's made him feel about the people in his life and blaming her for those feelings.
Very true, Sean. And having lots of visible ways to deal with something -- cancer, parenting, what-have-you -- gives people room to find an approach that fits for them and their very specific situation.
"Different = Somebody Must Be Wrong Then" is just pernicious.
Sean, #80: Good point -- this is a form of One-True-Wayism in action. And I suspect that Keller has a One-True-Way viewpoint about a lot of other things as well; it's something that's encouraged by large chunks of our society.
Lee, one-wayism is a nice way of putting it.
It's also an old media thing, I think. I detect in his reaction utter horror at the idea that people are also giving him their opinions. I wouldn't be surprised if by now he and his wife have decided they are the real victims in all of this.
Lee/82, Sean/83, "one-wayism" is the imperial mindset, and the NYT is certainly the preeminent news outlet of American Empire. No surprise that the mindset would influence thinking elsewhere in the paper.
Jay Lake talks to the Kellers.
Oh, Lizzy, I'm glad you got that up. I was coming here to do the same thing, because if anybody can talk about this well, it's Jay.
One of the themes that run thru this piece is the idea that "what I find objectionable, you cannot see or hear." I'm reminded of the people who watch "smutty" shows so thay can proclaim how horrible they are. The people who hunt out "smutty" books at the library to proclaim their borror that public funds are spent thus. (I seem to be channeling Mrs. Eulalie Mackechnie Shinn.)
Another theme is one of people being required to be responsible for actions of others. In the case of the Kellers, requiring that someone who has never encountered the Kellers before is responsible for the actions and feelings of the Kellers. They seem to be getting a lot of flak for it. Yet when a woman is sexually harrassed, she is given far more than mere flak for not taking responsibility for the actions and feelings of her harrasser. I am not paasing judgment here. Just observing the pattern.
For all that I am human, there are times when my own species makes no sense to me.
To stray a little into one-true-wayness discussion:
Years ago, I read a book called The Conquest of America: The Question of the Other by Tzvetan Todorov. Todorov used the Spanish conquest of the Americas to lay out a model for how a lot of us deal with a person or a culture really different from us. I shall now oversimplify it utterly!
First: complete ignorance of the difference
Second: this is different from me, this must be worse
Third: wait, I noticed some good things about it, it must be better than my way (possibly trying to adopt it wholesale)
Fourth: we both have good points and bad points, let's learn from each other respectfully
Sometimes I think about this when I notice myself automatically dismissing some other point of view, or I see someone else doing so. It helps me to think, it's natural to pass through the dismissiveness stage, but that doesn't mean one has to get stuck there.
Jay Lake has more to say about that whole "accept the inevitable with grace" thing: Dying Angry.
I think that for me the telling detail of Bill Keller's piece is the swipe at therapy dogs. It is a microcosm of everything that's wrong with his piece.
In the first place, it's just bad research. It takes almost no time to find out that therapy dogs cost nothing. They are basically little furry candy-stripers.
In the second place, the vague alarm at their possible cost stands in for and evokes huge, complex issues about the cost of health care in general and the cost of end of life care in particular. These are very real issues. They are also particularly hot topics because of the debate on Obamacare. However, the way he chose to evoke those issues does not invite careful thought or discussion. Instead, it's oblique and vague, which encourages the reader to attach to the comment whatever particular fears they might have without any reflection of the various implications of the choices we make as a society for how healthcare is paid for or apportioned. It also has the whiff of welfare-queen to it. Just a whiff, the implication that maybe the victim is getting some unnecessary luxury that someone else is paying for, instead of dying on the cheap.
Finally, it brutally ignores the human experience of dying. Therapy dogs offer a type of unconditional affection which often family and friends just can't, if only because they care too much. The patient doesn't have to worry about upsetting the dog by being sick or sad. On the one hand, culturally we tend to lecture sick people about maintaining a positive outlook and on the other hand, we look at using some of the tools to do this as a sign of weakness.
When my grandmother was in home hospice, she took advantage of every "quality of life" program available. And, you know, they improved her quality of life. A very nice woman came in once a week with a guitar to play and sing hymns with my very deaf and tone-deaf grandmother. I gather it was somewhat excruciating to listen to. But it was the highlight of her week for many weeks before her death, and I'm so glad she had that. It is unlikely that it extended her life any, but it was a kind, human thing. Which, you know, tax dollars did pay for. Go tax dollars.
So, yes, I, too, had a personal reaction to the Kellers. I can't help but think he wanted my grandmother to die alone in an institution, where she would have been quiet and unseen. 'Cause that would have been more dignified. Bah.
Please don't think I'm trying to derail, but the comment 77 hit a hot button issue for me: I don't have children. So were I to get cancer, does that mean my life would be less worth fighting for than that of someone who does? When I'm dying alone in my care home with no-one around except my robot butler, will that be less of a tragedy than if John-Boy and Jim-Bob and Sue-Ellen were at hand? I plan to rage just as hard, if I can.
Wnedy Bradley @91 Well, here's the thing. I'm 38 and childless and likely to stay that way. I still think I have lots of important things to do before I die. If I were to be diagnosed with cancer tomorrow I'd be all for taking it on as hard as possible.
A non-adult child is unfinished business of the most important category. It is not the only reason, but a strong and easily understandable one. Your reasons, and your definition of importance, are yours. So there are at least three different categories:
Keller's father, who was old and had seen his children grow up and, we might assume, had achieved much of what he wanted who decides to die quietly.
Lisa Adams who is not yet old and has young children she wants to help grow into adults and has other goals which living would bring within her reach.
Wendy Bradley and Neil W who don't have children, but have other things to live for and would fight disease to the last effort of their robot butler.
Does this help to clarify? I don't see the children as the decisive factor, just an easily recognisable important thing to live for.
I think if you've taken on obligations, you have to try your best to fulfill them. Having a child is an obligation (and that's one reason no one should be coerced into doing so). I think I would take that as implying an obligation to fight hard to stay alive as long as possible, if I had young children, whereas people who have none (like my real self), or whose children are all adults, can choose more freely.
I recognize it's more complex than that, of course. Among the complexities is the fact that a terminally-ill person in aggressive treatment may not be much good to hir children, and the process may actually traumatize them.
And this is all very abstract. It's how I think I would feel; I've never been terminally ill,* and I can't speak to that experience; I'd defer to anyone who can. Nor would I judge anyone who makes a different decision from the one I'm speculating I would most likely make.
In fact, I have considered my own death quite frequently. The cost of having lots of people I love is that I care about how they feel; the cost of having lots of people love me is that they would feel like shit if I died. So even though I have no children, I feel a certain obligation to go on living as long as I can. This would change if my living caused more pain than my death would.
This wasn't, as you can probably guess, primarily about terminal illness.
*It was clear from the beginning that my cancer was unlikely to be lethal.
Wendy, #91: I think Neil has summed it up pretty well. Children are *a* factor, which will be important for those who have them; parents with minor children are likely to consider them first and most importantly. They are not the *only* factor by any means. I don't have children either, but I have friends and loved ones who will be hurt when I go, and for their sakes AND my own reasons I intend to stay around for as long as I can. (However, I reserve the right to change my mind should I contract a painful and terminal illness. Either way, it's MY decision to make, not Keller's.)
Neil W @ 72:
I'd go further and say that both, and this, are examples of magical thinking, where people tell themselves that if they do The One True Right Thing, they can control the outcome. It follows that if someone does it another way, they're challenging the idea that there is a One True Right Thing, or even suggests that there may be one and theirs isn't it.
If your thing is not the One True Right Thing, then you _don't control the outcome_ - and worse, if someone else did something different with a positive outcome, then you _could have_.
Suffice it to say that it astonishes me not at all that this astonishingly low level of emotional competence is coming from the man who brought us the Iraq war.
Wendy, no, I certainly didn't say "if you have children you fight and if you don't have children fuck off."
I said that different ways of dying are appropriate to different people, and gave two examples from my life. It happens that both Lisa and Jay, examples from earlier in the thread, are in the same category as my friend, so that is the category I was thinking of.
Many people had already articulated the position that they'd also fight for every scrap of life they could get.
I didn't think about whether it was necessary to also say "and also other people besides these and these others ones might also think this way" when I was already saying "people have different approaches to dying depending on their own circumstances."
Lisa Adams is not a press release. No relation, by the way, except that we're both human beings. And isn't that enough?
In just the time since I originally read the articles in question, I've received my own diagnosis of metastatic colon cancer.
I'm tweeting, blogging, and screaming to the sky anything I damn well please.
And fighting, oh yes. Science and snark.
phiala @98--I'm so sorry.
And yes. Shout what you please. The Kellers of the world are free to cover their eyes and stick their fingers in their ears.
Good luck to you, Phiala.
Phiala, all the best to you. Keep screaming as long as you need it.
Also, good luck!
May you reach the best outcome for yourself, Phiala, by living in your own way -- including, if you wish, screaming. Not that you need my permission or support (at this point)! Save it up for later.
Phiala, #98: GoodThoughts for recovery being sent your way. Do what you need to do to get there.
Phiala, I'm sorry for your diagnosis, and wish you the best possible outcome (if that's OK). Do whatever you need to do.
Phiala @98: We'll all scream with you. Best of luck with whatever treatment you choose.
Phiala: good thoughts be with you and all those treating you. Do what you need to do and to hell with anyone who thinks they have the right to disapprove.
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