Tuesday, October 24, 2017

Ticked Off: What We Get Wrong About Lyme Disease

My sister Camilla and I stepped off the passenger ferry onto the dock at Vineyard Haven, Martha’s Vineyard’s main port, with a group that had already begun their party. They giggled, dragging coolers and beach chairs behind them. We competed to see how many items of Nantucket red we could spot.

Not that we were wearing any. Camilla wore shorts with white long underwear underneath, and I wore beige quick-dry hiking pants. Both of us had on sneakers with long white socks. It was late June, perfect beach weather. The water sparkled. But we weren’t headed toward the ocean. We were there to hunt for ticks.

On the island, we hopped in a cab. Camilla looked longingly out the window as we passed the turns for the town beach and Owens Park Beach. The driver pointed out the location of the famous shark attack beach from Jaws. We drove on south to Manuel Correllus State Forest, an unremarkable park in the center of the island and the farthest point from any beach.

Deer ticks, or blacklegged ticks, are poppy-seed sized carriers of Lyme disease. We needed to collect 300 before the last ferry returned to Woods Hole, Massachusetts that night. We each unfurled a drag cloth—a one-meter square section of once-white corduroy attached to a rope—and began to walk, dragging the cloth slowly behind us as if we were taking it for a stroll. The corduroy patch would rise and fall over the leaves and logs in the landscape, moving like a mouse or a chipmunk scurrying through the leaf litter. Ticks, looking for blood, would attach to the cloth. Every 20 meters, we’d stoop to harvest them.

Tick collecting made it to Popular Science’s 2004 list of worst science jobs alongside landfill monitor and anal wart researcher. On cool days, though, sweeping the forest floor, kneeling to pluck ticks from corduroy ridges, the job became rhythmic. I felt strangely close to the forest. As I soon found out, the work got me closer to people, too.

Sometimes hikers would stop by, curious, then repulsed. They would want confirm the proper way to pull off ticks (with tweezers planted close to skin, perpendicularly), or to tell us about their diagnoses. Lyme disease isn’t like many of the diseases studied by my friends in the epidemiology department, where I was a doctoral student. No one talks about their grandmother’s syphilis infection, caused by Treponema pallidum, another spirochete bacterium.

But once people heard what Camilla and I were collecting, stories of brushes with ticks and family members’ diagnoses were shared freely. I quickly became the “tick girl.” When I started my dissertation I was preoccupied by the ecological question: How have humans altered the environment and triggered a disease emergence? By the time I finished, I realized that far more interesting were the rich and revealing tick stories shared with us along the way.

Illness makes us talk. “This is true of all forms of pain and suffering,” Arthur Kleinman, an anthropologist and physician at Harvard University, told me. We talk about illness “to seek assistance, care, and in part to convey feelings about fear, anxiety, or sadness.” In his book, The Illness Narratives, Kleinman writes that “patients order their experience of illness … as personal narratives.” These narratives become a part of the experience of being sick. “The personal narrative does not merely reflect illness experience, but rather it contributes to [it].”

The result is a peculiar togetherness. Once, a friend’s mom emailed that she’d just pulled off her first tick of the season, from her pubic hair: “I’m guessing it doesn’t it surprise you to hear, Katie, that you came to mind almost immediately when I discovered the little bugger? I’m afraid that ticks and you will be forever linked in my mind.” Naturally some took the motif too far. One creepy grad student thought that, because I was standing in front of a tick poster at an academic conference, I’d want to hear about the time he pulled a tick off his dick.

The country singer Brad Paisley romances the tick: “I’d like to see you out in the moonlight / I’d like to kiss you way back in the sticks / I’d like to walk you through a field of wildflowers / And I’d like to check you for ticks.” I’m with Paisley here. Creeps aside, tick grooming is an act of love. My sister and I were diligent in the tick checks we gave ourselves and each other. Most nights, we’d pull off several at the campsite showers. (...)

The idea that the natural and human exist in separate realms is the very “trouble with wilderness,” the environmental historian William Cronon wrote in his 1995 book Uncommon Ground. The wilderness that we’ve feared, romanticized, and valorized over the last few hundred years, he says, is a fantasy:
[Wilderness] is quite profoundly a human creation—indeed, the creation of very particular human cultures at very particular moments in human history … Wilderness hides its unnaturalness behind a mask that is all the more beguiling because it seems so natural. As we gaze into the mirror it holds up for us, we too easily imagine that what we behold is Nature when in fact we see the reflection of our own unexamined longings and desires.
In the stories told by our doctors, our parks, and the CDC, ticks are invaders. To defend ourselves, we use insect repellent, clothing, and prophylactic antibiotics; fences, signs, and pesticides. “When it comes to pesticides, the environmental toxin par excellence, Lyme patients are often its greatest proponents,” writes Abigail Dumes, an anthropologist at Michigan State University. We prefer the risk posed by pesticides to the fear of Lyme, Dumes explained to me. They let us become actors instead of victims. By dosing ourselves with pesticides (or antibiotics), we gain control of our risks. Ticks, on the other hand are uncontrollable. “It’s difficult to live with the idea that there are enormous threats and many can’t be controlled,” Kleinman tells me.

The problem is our defensive barriers aren’t working particularly well. Deer ticks are now established across 45 percent of United States counties. Their range has more than doubled in the last 20 years. Reported cases of Lyme disease have more than tripled since 1995 and the CDC estimates that more than 300,000 Americans fall ill each year. The story of tick-as-invader isn’t particularly helpful—or complete.

by Katharine Walter, Nautilus | Read more:
Image: Katharine Walter