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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