[BobbyB]

Death diaries
IVOR TOSSELL

From Friday's Globe and Mail

March 20, 2008 at 11:00 PM EDT

To be frank, I really know very little about death. Death is something we've professionalized in this society. A few are charged with facing it every day: the first responders, the police, the soldiers, the medics and caregivers. The rest of us do our best to pretend it's not there, until it insists its way in.

So it's a profoundly disconcerting experience to read blogs like the one by a man who called himself Brainhell, who died of Lou Gehrig's disease on Feb. 1. His pseudonym was a sardonic twist of his real name, Brian Hill, according to The San Francisco Chronicle, which reported his death. Hill blogged his entire disease, from diagnosis to the final I-love-you's 1,520 days later (he was counting).

He's still pictured on the top of the site, peering up at the camera with brown eyes, electrodes wired to the skin around his scalp. Blogs being reverse-chronological, the topmost entry is the record of his last words.

He's not alone. Blogging the process of dying is becoming a small yet poignant fixture on the Internet landscape. For some, dying is a time to reach out to the world, instead of retreating from it. It may not be the next great trend in self-expression, but it's a form of living memorial that we're going to be seeing more of, and one that – however awkwardly – we'll have to get used to.


Hill's blog ran from December, 2003, to January, 2008, less than a week before his death. In one particularly startling post, entitled “So, you're going to die,” he transcribed, word for word, the doctor's appointment at which he was given his fatal diagnosis.

Lou Gehrig's disease, or ALS, is an incurable degenerative disease that steadily weakens a person's ability to control their muscles, progressively stripping them of their ability to move, to eat, to speak and eventually to breathe.

Much of Hill's writing describes the mechanics of physical disability, from the surgical insertion of a feeding tube to the many and manifold indignities of needing outside help to manage one's own body, without even being able to speak well enough to give verbal instructions.

His writing is inhabited by a pantheon of health-care workers fumbling to manage him: good nurses, idiot nurses, sexy doctors, exasperated home-care workers, evil doctors, and his saintly wife. And, above all, there's his own self-portrait: thoughtful, demanding, loving, suffering and sometimes ornery. Did his portrait match reality? Who's to say?

As a reader, how you relate to a site like this depends on when you find it. A blog about death presents a very different experience to those who find it while its author is still writing. The completed blog – death notice sitting on top – is tantamount to a monument, a sad object lesson in missed opportunities.

But those who find such a blog during its writing can become part of the story as it unfolds. They cluster around it in a community of pseudonymous hangers-on, a loyal peanut gallery of the affected and similarly afflicted. The author writes out into the void, and voices from the void – never fully revealing themselves – write back. When the writer dies, his readers' grief is real.

Several years ago, a young BBC reporter named Ivan Noble was diagnosed with a brain tumour. He started running a “tumour diary” on the BBC website in 2002, documenting a roller-coaster ride of remissions, tests, relapses and the struggle of learning to live with a limited lifespan.

I came to it near the midpoint. I can remember, one day in 2003, logging onto his website at the end of a workday, realizing with a small knot in my stomach that his latest test results were due back that day. The results contained good news. I was elated, and so were hundreds of others. When, two years later, he died, it was a punch in the gut.

With every update Noble posted, readers would respond by the hundreds, each with their own reason to care. Some were ill themselves. Many had been touched by cancer in one form or another, and still others were simply touched by his prose.

In the end, though, Noble's diary, and all those like it, was a narrative to follow. Like every blog that's true to life, it was a performance of sorts, a work of art with all the foibles that art brings. The tendency on blogs to share gory details (from messy breakups to the insertion of catheter tubes) has given blogging a veneer of transparency, yet they are all, in the end, literary endeavours.

But never before has a medium lent itself quite so willingly to exploring the divorce of mind and body. Blogging allows the voice to go on, even as the body fails. While the Internet has always been a place to escape one's body, in sickness or in health, these blogs take the disconnect to an extreme.

How disorienting to read Brainhell's articulate sentences railing against his inability to speak with his attendants other than in an incoherent slur. In a way, a blog becomes a surrogate body, able to say things the real body can't, and say it to an audience the physical body has never met. It's very real, yet independent of physical reality.

It's a confusing genre, one that might be less a demystification of dying than a dramatization of it. It doesn't matter. Sites like these still bridge the divide between the well and the ill, and brings death – almost the very moment of death – to that vast bulk of the population that's so profoundly uncomfortable with it. More power to them; it's a subject that won't be ignored.

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