Monday, January 13, 2014

Lisa Bonchek Adams: say what you will


To write this, I first had to do something really difficult. I'll explain that in a minute, but it's the reason I'm crying.

The debate de jour has been sparked by some of the most insensitive columns I've ever read: this, from the Guardian (which includes the utterly shameful admission that the columnist included direct-message conversations in the column without permission), and this from the New York Times – a stunning husband-and-wife double-act to piss on a dying woman because she's Tweeting her cancer.

To answer the wife, Emma Keller: there is no ethical question. A person has chosen to write and publish, and has a platform from which to do so, and you have no damn say in it. And, Bill Keller: your snide aside about the cost of visiting dogs is beyond reprehensible.

The cross-platform pissing contest is cowardly beyond anything I can express.

And I recall to mind another individual who chose to die in public, Denis Wright. His blog posts – still preserved here, for how long I know not – were an exemplar of dignity, a life documented in public as Lisa Bonchek Adams' is, and the reason I'm crying now, because I re-read the last week of his journey and the following eulogies and damn even writing these words taps a spring of tears. It was really difficult.

If Lisa Bonchek Adams is wrong to fight her fight in public, then so was Denis. I'm too distant from Ms Adams to speak to her stance, but Denis, I at least knew well enough on Twitter to chat with, and I admired him well enough to (I hope) learn from.

And I'm still on the edge of tears.

My wife and I have chosen to put some of her experiences on this blog, and I won't reiterate them tonight. Our path is different: not cancer, but the toxic and dangerous path of a medically-suppressed immune system.

The reason we speak out is because we know there are things aren't known to the world at large: really, the same reason that Ms Adams is Tweeting. And because we see the “pink ribbon” view of illness – the glamour that raises funds – and like her, we resent it, because there's nothing glamorous about illness, and nothing pink about vomit or shit or pain.

Ms T and I are with you, Lisa Bonchek Adams: keep saying it. We understand. We endorse.

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