I’ve been blogging a mixture of personal and political posts for ten years. Over the course of a decade of life, bad things will happen. In our case, our “bad things” included the diagnosis of a developmental disorder in a son and two involuntary job changes. I blogged about pieces of those disasters as they unfolded. The full truth wasn’t appropriate for this blog for a multitude of reasons.
Still, my disasters weren’t really, really horrible. Ian’s issues were inconveniences, relatively minor, and balanced by enormous love. Both career changes quickly led to other opportunities and never resulted in financial ruin. A number of times, I’ve wondered whether or not I would blog about events, if something really, really terrible happened. I have found lots of support over the years with the minor disasters, so maybe I would reach out for support when the super bad thing happened. But maybe privacy is a good thing, too.
A few days ago, a few twitter friends linked to a column in the Guardian, which questioned the appropriate-ness of blogging about having cancer. The author, Emma Keller, compared cancer blogging to funeral selfies. That column has since been deleted. Then the author’s husband, Bill Keller, an editorial writer for the Times, doubled down and continued to question the cancer blogger, Lisa Adams. More of the story here and here and here.
Here’s Lisa’s blog.
The Kellers don’t sound like very nice people.
Apt. 11d 
It sounds to me as if the Kellers have some guilt about Mrs. Keller’s father.
I don’t like Mr. Keller’s implication that Mrs. Adams’ online writing inspired Memorial Sloan-Kettering to give her better care. It seems to me that that’s the sort of thing one should carefully research before trumpeting in print. It would be hard to determine, though, as, if only 3% of adult cancer patients agree to join medical trials, you’d have to determine the standard of care given to that 3%–not easy at any time, and I’d think HIPAA would make it impossible.
Also considering the amount of fluff about really silly (though wealthy) people the Times has published, I don’t think he has a leg to stand on on the “TMI” front. As far as I’m concerned, the Times should have fewer reporters writing about rich people’s choices in interior decorating, and more reporters writing about Thailand.
The nice thing about blogging is that people can write about what interests them, even if they haven’t received the New York Times’ nod. This could also be a sign of the passing of an aristocratic era, in which the Times decided what was, “fit to print.”
If I had a family member with cancer (God forbid), I would find online records of other patients’ experiences very helpful. We speak with others to share experiences. If written material offends one’s sensibilities, there’s no requirement one reads it. One could always turn to the Times’ no-doubt breathtaking report on a Parisian chef’s way with vegetables. (I can’t vouch that it’s breathtaking, as I chose not to read it. I’m pretty sure it will fit the Kellers’ sense of decorum, though.)
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Don’t you think part of the Kellers’ objection is that Adams has not received the New York Times’ nod? They seem very old school and almost offended by the idea of blogging.
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Even more offended by Twitter than blogging. Because Twitter, he said, “encourages reflexes rather than reflection.” And you need reflection because otherwise you might do something stupid like argue with someone about whether they are dying or not and write the results in a newspaper.
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“otherwise you might do something stupid like argue with someone about whether they are dying or not”
Or even, conceivably, help to gin up a war
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It’s as if there is a deliberate effort to make David Brooks look better.
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I can count on your for my daily snicker. Thank you for this!
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Clearly people with cancer shouldn’t lead public lives at all because it might make other people uncomfortable. The Kellers seem like really gross people.
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I suspect that the first article that was written for the Guardian was simply manufactured to gain traffic, but not negative traffic. The author said “Oh, look that article on funeral selfies on Buzzfeed got lots of hits. Let me do it one on cancer blogging. It’s the same thing.” She did not realize that Adams had a huge following on Twitter. My two twitter friends have had breast cancer and they promptly denounced the Guardian article, as did all of Adams’s thousands of followers. Keller got all protective of his wife and just couldn’t understand twitter backlash and wrote this piece to try to defend her and then got in even deeper. Neither really understands new media, which is sad, because new media isn’t really new anymore.
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Nor do they seem to understand the first rule of holes. Of course that was evident during his time as editor-in-chief, so I guess I should say they *still* don’t understand the first rule of holes.
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I don’t understand why anyone would complain about what one writes on their personal blog — you surely don’t have to read it.
I read the Bill Keller column, and couldn’t read the Emma Keller’s post, so I feel like I’m in on only part of the conversation. But, the Keller article isn’t about blogging, is it? It’s about end of life choices (and, his believe that Adams is engaging in willful ignorance about her disease).
I haven’t read Adams, but the description sounds a bit like David Rief talking about his mother (Susan Sontag). Interesting, actually, that both were treated at Sloan-Kettering. I think they are becoming known for aggressive treatment of potentially hopeless cases, and in Rief’s case. Different doctors have different attitudes on treatment, and Rief describes doctors giving different messages:
“The physician was not a very empathetic guy. I’m sure he’s a good doctor, but his human skills were not exactly brilliant. And he told her the bad news. She had this lethal blood cancer and, basically, there was no treatment. ” then, she finds another doctor:
“She found a physician at the great cancer center in New York, Memorial Sloan-Kettering, a brilliant man who had all the human skills the first doctor did not. He said, “If you want to fight, if what matters to you is not quality of life…” And my mother said, “I’m not interested in quality of life.”
I think celebrities get different treatment than others, and that’s a fact of life. Maybe you can become a celebrity by blogging, but I think that you can get the kind of treatment Keller describes by being an active soldier in your care. The doctor then sees you as a partner, and not someone they are teaching/guiding/coaching. Ultimately I think we have to give patients the right to chose whether they want the battle or the guidance.
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Oh, and yes, the patients who are willing to go through these treatments, do contribute to the research by allowing doctors to test ideas on them, I think that builds the partnership, too. The fear is that the doctor is selling the potential of survival when really there’s only an experiment going on.
Regarding Keller’s “guilt” about his father, I’d say the issue is that this is one of those examples where expecting others to agree with the decision you want to make (either to fight to live or to die gracefully) is too great a demand and that you have to take ownership of your own decision, without expecting everyone or even the social norm, to agree with you.
There’s a family I follow online who has taken extremely aggressive treatments for their child, who has had to be the soldier in the battle. They are at least partially religiously motivated, with a belief that as long as God shows they a treatment, they have an obligation to take it. They document their aggressive treatments for their doctor (they are physicians) at least partially in the hopes that others can know about it for their own children (the cancer is a rare cancer that strikes in childhood).
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I think that the attitude that drives comments like Keller’s also ignores the value of the extra time that the battle brings. It’s one thing when you are talking about a 70+, 80+, 90+ year old who has accomplished their life’s work and another when you are talking about a young mother. Buying 2, 3, 4 5, years of time makes a huge difference in the life of the children you are raising.
In general, I am inclined to the “die gracefully” choices, but I also understand suffering to give your children a little bit more time to grow up before they are motherless.
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bj said:
“Buying 2, 3, 4 5, years of time makes a huge difference in the life of the children you are raising.”
Exactly–it could be the difference between not remembering your mother at all and having a memory or two of her.
“In general, I am inclined to the “die gracefully” choices, but I also understand suffering to give your children a little bit more time to grow up before they are motherless.”
Exactly. I think if it came down to it, a lot of us would discover that there were particular events that we wanted to live to, even if it meant a fairly low quality of life while waiting–a wedding, the birth of a first grandchild, a major birthday party, a child becoming a doctor, etc. I’ve got a 1-year-old, and I would be prepared to suffer quite a lot of discomfort to get her to at least 4 or 5-years-old before checking out. More frivolously, I’ve never seen Paris, and I’ve always wanted to go.
I’m 38 and my mom had breast cancer in her very early 40s.
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Laura said:
“I’ve wondered whether or not I would blog about events, if something really, really terrible happened.”
I think yourself a little time for reflection and perspective before sharing it with the world is a good thing.
Here’s a recent story about a woman who had a beautiful and exhaustively photographed and Twittered homebirth–and then almost bled to death afterward (she lost probably half her blood before being stabilized).
Here’s her Huffington Post story (HuffPo tends to be pretty crunchy):
http://www.huffingtonpost.com/2014/01/08/photos-home-birth-social-media_n_4549531.html?ncid=edlinkusaolp00000009
Here’s Dr. Amy Tuteur’s unfriendly analysis of the HuffPo story:
http://www.skepticalob.com/2014/01/ruth-fowler-iorio-shares-beautiful-messy-reality-nearly-of-bleeding-to-death-at-homebirth.html
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Sorry! “I think giving yourself a little time for reflection.”
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