May 24, 2012
What spreads almost as fast as necrotizing fasciitis, a.k.a. flesh-eating infection? News stories about it.
Surely by now you've heard about the horrifying case of Aimee Copeland, the 24-year-old Georgia graduate student who cut her leg on May 1 and was on life support by May 4. When Copeland regained consciousness, much of the plugged-in world knew what she still did not: Her left leg had been amputated, skin on her abdomen had been removed and she still risked losing her right foot and all 10 fingers (she would later lose that foot and both hands). Though those details had been plastered across news sites for days and her father had described her injuries on the "Today" show, Copeland at first knew only that she'd been hospitalized for several days.
It's not unusual for critically ill patients to know less about their situation than the friends, family and medical staff around them. But Copeland's case is different, more extreme: a testament to the visceral curiosity people harbor about rare, horrifying ailments like necrotizing fasciitis and to the way new forms of communication have reshaped what it means to support the sick and their loved ones, as well as what it means to be sick.
That is to say, a personal battle can very quickly become a public spectacle.
Often, the attention is welcome. What better way to elicit casseroles or organize a blood drive than to write Facebook posts about chemo treatments or broken bones? But for a patient who is unconscious or otherwise too sick to know her condition, having her prognosis go viral before she knows the first thing about it is like being talked about behind your back in high school while you're trapped in an episode of "The Twilight Zone."
If you're a public figure, that's one thing. It was unnerving to witness people obsessively following the medical updates about Arizona congresswoman Gabrielle Giffords as she lay in a medically induced coma, but it was also legitimate. Giffords was a community representative, and that community had a right to know what was happening. Besides, her staff and her doctors were pros, releasing just enough information to feed the hunger (and the media camped outside the hospital) while still guarding her privacy.
But Copeland is not an elected official. Nor, believe it or not, is she the only victim of necrotizing fasciitis to make headlines in recent weeks. Two other cases have found their way into the news cycle, one in South Carolina and another also in Georgia. But we know far less about these cases. That's because Copeland's unwitting media stardom is due largely to a blog kept by her father, Andy. Though he's been talking to traditional media outlets too, even a cursory look at the news coverage shows that it's his blog entries that trigger the stories. This is how millions of people came to know about Copeland's amputations before she did.
With its mix of matter-of-fact medical details, calls to prayer and expressions of familial love, Andy's blog is moving and quite beautifully written in places. But having myself once emerged from four days of unconsciousness only to later sift through a trail of emails containing reports of my near death, I can say that it's pretty freaky to find yourself at the center of a story that you're the last to hear.
But maybe that very twist is what has made Copeland's story so hard to turn away from. We're not just watching her nightmare from afar; we're watching her learn about it up close. We're being invited to see the nightmare not just as voyeurs but through the victim's own lens. The result is that Copeland is not merely a stranger to whom something terrible has happened but a symbol of the terrors we hold within ourselves.
Medical dispatches, it should be said, act as a crucial coping mechanism amid a crisis. By forcing us to boil down fear and chaos to a frank, coherent message, they calm things down, frame the dread, replace panic with a manageable narrative. That Andy Copeland blogged about what was happening to his daughter before he had a chance to tell her himself is freaky indeed but ultimately understandable. If Aimee Copeland eventually reads that blog, she's likely to find it not only freaky but possibly unbearable.
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