By David Handelman
On March 13, the lead item on TVBarn.com, the homespun Web site of Kansas City Star TV critic Aaron Barnhart, dissected the recent feud between David Letterman and his CBS boss Les Moonves, musing "Perhaps it's just a coincidence that Letterman is in negotiations to renew his contract."
It was exactly the sort of Dave-obsessed minutiae that was in Barnhart's first web posting back in February 1994 — a page he first called "Letterman News" — while he was working as a secretary in a Chicago real-estate office to pay off student loans.
But lately TVBarn has unexpectedly become home to a medical drama that isn't broadcast on "E.R." or "Gideon's Crossing." Last November, after months of debilitating symptoms he chose to ignore, the 35-year-old Barnhart was diagnosed with Hairy Cell Leukemia, a rare cancer (600 U.S. cases per year) that in the past two decades has become more treatable.
And the reporter — and webhead — in Barnhart decided to write about his illness on his site.
So now, interspersed with Barnhart's musings on this week's episode of "Ed" and the future of the XFL, or links to his newspaper pieces, are detailed recaps of his chemotherapy side-effects; layman's explanations of platelet counts; the fine print of experimental drug treatment consent forms; ruminations about how the disease brings about "right-angle turns" in people's lives; and a travelogue of his recent pilgrimage to the M.D. Anderson Cancer Center in Houston, where 65,000 patients are treated each year, which Barnhart avidly described as "a thriving bazaar of human possibility." (Also, for the strong-hearted, there are photographs of a full-body allergic rash Barnhart suffered back in November.)
"People have never come to my site and stayed expecting a traditional TV critic's report," Barnhart says via phone from his Kansas City home, where he's quarantined while his immune system is depleted by treatment.
Though previously he never disclosed much personal information per se, he's always cherished the web's "much more personal and idiosyncratic style." And, despite having a degree in classics from Northwestern University and a graduate degree in divinity from the University of Chicago, Barnhart has found that "the only way I've ever been able to make sense of things is to think out loud. I'm not a good ruminator, I need to be in conversation with people."
Despite Barnhart's confidence about his case, he says, "It's not necessarily an upbeat narrative. I think the medical system is very screwed up." On the site, Barnhart explains his motives: "Rest assured I'm not trying to win anybody's sympathy. ... Rather, I'm initiating you to the mindset that I think is crucial to surviving and thriving under cancer. You may need it someday."
"I became aware very early on during my hospital stay that people didn't quite know how to respond to my case," says Barnhart. "Some people responded melodramatically, some recoiled and I stopped hearing from them. It seemed the whole thing needed to be normalized, because the odds you're going to have cancer in your lifetime are one in two if you're a man and one in three if you're a woman."
In fact, his wife, Diane, a freelance book editor, was diagnosed with breast cancer in 1999 and had a mastectomy, and the experience taught Barnhart the importance of being a proactive patient. It was misdiagnosed at first, and Barnhart sat in on all her meetings with doctors and took notes. "Doctors presume to have your trust because they cling to the antique notion of doctor as God." While he applauds the attempt by "Gideon's Crossing" to show the fallibility of doctors, he notes, "it's instructive that the show is struggling."
Ironically, he blames TV for the ignorance he's trying to combat. "People keep telling me 'You sound good' — they're surprised to hear a guy has a serious illness that isn't debilitating him. That conditioning comes from TV medical dramas. On TV, everything goes to the patient's windpipe and central nervous system, they're always shown on their backs, whispering in some barely audible voice. Most people with cancer don't look or sound like they have it, and that will increasingly be the case as medical advances continue."
Unlike when he sometimes takes a political stance, the feedback on his medical travails has been uniformly positive. Readers have written in with useful information about the National Bone Marrow Registry; others put him in touch with their siblings with the same disease; others reported he'd inspired them to donate blood.
The response has encouraged him to work up a book proposal about his experience. "A lot of cancer narratives are either overly clinical, written by a doctor, or overly subjective, 'What I'm going through and feeling," like "The Red Devil" by Katherine Russell Rich. I'm more in the middle, stopping to explain what's happening, what's involved, making the science as relatable as I can, personalizing it through my story and Diane's."
Barnhart is as surprised as anyone at the turn his writing has taken, but says it's no less a fluke than his career writing about TV. Growing up in Billings, Montana, "like any kid I had TV almost on intravenous into my arm." By the time he was in college, he hardly watched at all, but he developed the habit of getting home late at night and watching Letterman. Getting a primitive Internet account through the university in 1990, he started doing e-mail and newsgroups, and eventually got his own local account that connected once every hour. (Back in those caveman days, no one had browsers, and everything was plain type.)
He began posting to The Well and the alt.fan.letterman newsgroup; six months letter he started a "Late Show News" e-mail that eventually reached 12,000 "subscribers." Richard Gehr at the Village Voice noticed and got Barnhart his first freelance assignment.
Barnhart began haunting the Museum of Broadcast Communications to fill in his missing TV knowledge, and started to expand his turf. After he networked at an annual TV Critics meeting, a fellow critic (and subscriber) recommended him for the opening at the Kansas City Star, so he moved there from Chicago in 1997.
Despite his current "house arrest," he's watching no more TV than before — but no less either. "I enjoy being a TV critic today as much as I did before I got sick," Barnhart says. "This week, I discovered a great new show, 'The Job.' Yes, I have to sit through a lot of crummy preview tapes, but there's drudge work in every job. What I've mostly gotten out of this illness is the gift of time, a forced sabbatical, which I've spent reading and writing. I haven't filled it up watching TV. Nor would any sane person."
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