For the diseased

I cannot possibly do better than Zeynep Tufekci in taking two journalists — New York Times columnist and former executive editor Bill Keller and his wife, Guardian writer Emma Keller — to school in a brilliant post that explains how each exploited and offended, misinterpreted and mistreated a mother who they think is doing too much and saying too much about her cancer. Please, please go read that now.

I will address only one matter myself: blogging and tweeting — or as we used to say, talking about — disease.

I will readily tell you about my prostate cancer and consequently malfunctioning penis, about my thyroid cancer, about the atrial fibrillation that came after I sucked in the dust of destruction at the World Trade Center, and while I’m at it, I might as well add a note about my bursitis.

I don’t do this because I am a hypochondriac or want an ounce of sympathy — I deserve none as I have had cancer lite, with no chemo, no radiation, only momentary pain or inconvenience, and most importantly, no mortal threat. I don’t do this to take part in what my elderly parents living in a community of elderly friends call “the organ recital.”

I do this because I gain support and information and because I can give others support and information. I do this because I believe we must talk about about sickness, openly and honestly, to rob it of its stigma, to pool what we know about it, to teach people about it, to influence policy about it.

And why shouldn’t we? It’s just disease. It happens to all of us, except those who come to violent ends. Imagine a world in which there is no stigma about illness, in which ailments are not a matter of privacy or lost insurance or jobs, in which we collectively share and learn as much as we can about what afflicts us so it can afflict fewer. It’s just data.

So I am astounded that two journalists who should support transparency as a virtue come to question the ethics of Lisa Adams for talking about her disease. It is her disease. It is her motives that matter, generously trying to educate people about her treatment. How dare a journalist of all people try to tell someone what she cannot say? How could a journalist seek less information in the world?

When I blogged about my prostate cancer, one and only one guy — who didn’t like me anyway — similarly complained that I was saying too much. He accused me of oversharing. I said the problem is not that. It’s that he was overlistening.

If Emma Keller doesn’t want to read about Lisa Adams’ cancer, then she shouldn’t read it. If Bill Keller thinks Adams should not treat her cancer and her pain, well, he should mind his own business.

But if they do want to act as journalists in this new age, then they must follow Tufekci’s advice and learn that when they read someone’s words, they are not interacting with media, they are interacting with a person. It so happens the person they were writing about is brave and generous. They were not.

And we all should be welcoming the opportunity to hear more voices, learn more perspectives, gain more information. And we should all be wishing Lisa Adams our best for what she is going through and what she is offering us.

  • Witold Witkowski

    Jeff, are you going libertarian on us? :)

  • http://www.smartpei.typepad.com robpatrob

    Yea! Jeff

  • Ken Nielsen

    Well discussed, Jeff. Thanks.

  • andrew_myers

    This is not to impugn the care that you got, but there is a wide range of outcomes from treatment of prostate cancer. Getting the right surgeon who knows how to spare the nerves and who has a lot of experience with doing the operation well is likely to make a big difference to post-operative function. This doesn’t necessarily mean going for the latest robotic surgery methods, either. These will leave you with fewer scars on the outside, but that isn’t what you end up caring about.

  • davechase

    Jeff – I thought of you when I read “Memo To Bill Keller: This Is Why Patients Blog About Illness” http://ow.ly/sL14V which highlights a study that proves your point. There is an organization/movement called the Society for Participatory Medicine which has people such as @ePatientDave (I think he’s your brother of another mother — kindred spirit).

  • Alexandre C.

    Really nice words from you Jeff..Keep up the good work!

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