The Best American Essays 2014 (17 page)

Patients started bringing these threads and flecks and fuzz to their doctors, storing them in Tupperware or matchboxes, and dermatologists actually developed a term for this phenomenon. They called it “the matchbox sign,” an indication that patients had become so determined to prove their disease that they might be willing to produce fake evidence.

By the mid-2000s, Morgellons had become a controversy in earnest. Self-identified patients started calling themselves Morgies and rallying against doctors who diagnosed them with something called delusions of parasitosis (DOP). Major newspapers ran features posing some version of a question raised by the
New York Times
in 2006: “Is It Disease or Delusion?” The Centers for Disease Control and Prevention (CDC) launched a full-scale investigation soon afterward.

In the meantime, an advocacy organization called the Charles E. Holman Foundation started putting together an annual Morgellons conference in Austin, Texas, for patients, researchers, and health-care providers—basically, anyone who gave a damn. The foundation was named for a man who devoted the last years of his life to investigating the causes of his wife's disease. His widow runs the conference. She's still sick. The conference offers Morgies refuge from a world that generally refuses to accept their account of why they suffer. As one presenter wrote to me:

 

It is bad enough that people are suffering so terribly. But to be the topic of seemingly the biggest joke in the world is way too much for sick people to bear. It is amazing to me that more people with this dreadful illness do not commit suicide . . .

 

The CDC finally released its study, “Clinical, Epidemiologic, Histopathologic and Molecular Features of an Unexplained Dermopathy,” in January 2012. Its authors, in association with the so-called Unexplained Dermopathy Task Force, had investigated 115 patients, using skin samples, blood tests, and neurocognitive exams. Their report offered little comfort to Morgellons patients looking for affirmation:

 

We were not able to conclude based on this study whether this unexplained dermopathy represents a new condition . . . or wider recognition of an existing condition such as delusional infestation.

 

The authors suggested, with some delicacy, that patients might be treated for a number of “co-existing conditions,” such as drug abuse and psychosomatic disorders.

The bottom line? Probably nothing there.

 

The Westoak Woods Baptist Church, on Slaughter Lane, is a few miles south of the Austin I'd imagined, an Austin full of Airstream trailers selling gourmet doughnuts, vintage shops crammed with taxidermied animal heads and lace, melancholy guitar riffs floating from ironic cowboy bars. Slaughter Lane is something else. It's Walgreens and Denny's and eventually a parking lot sliced by the spindly shadow of a twenty-foot-tall cross.

The church itself is a low blue building. A banner for the 2012 conference reads,
SEARCHING FOR THE UNCOMMON THREAD
. By the entrance a cluster of friendly women greet new arrivals. On each of their matching shirts, the letters
DOP
are slashed out in red. Most of the participants at the conference, I will come to realize, give the wholesome, welcoming impression of no-nonsense midwestern housewives. I will also learn that 70 percent of Morgellons patients are female—and that women are especially vulnerable to the isolating disfigurement and condescension that accompany the disease.

The greeters direct me past an elaborate buffet of packaged pastries and into the sanctuary, which is serving as the main conference room. Speakers stand at the pulpit with their PowerPoint slides projected onto a screen behind them. Each cloth-covered pew holds a single box of Kleenex. The room has one stained-glass window—a dark-blue circle holding the milky cataract of a dove—but its panes admit no light.

This gathering is something like a meeting of alcoholics or Quakers. Between speakers, people occasionally just walk up to the pulpit and start sharing. Or else they do it in their chairs, hunched over to get a better look at one another's limbs. They swap cell-phone photos. I hear people talk about drinking Borax and running sound waves through their feet, about getting the disease from their fathers and giving it to their sons. I hear someone talk about what her skin is “expressing.” I hear someone say, “It's a lonely world.”

I discover that the people who can't help whispering during lectures are the ones I most want to talk to; that the coffee station is useful because it's a good place to meet people, and also because drinking coffee means I'll have to keep going to the bathroom, which is an even better place to meet people. The people I meet don't at first glance look disfigured. But up close, they reveal all kinds of scars and bumps and scabs.

I meet Dawn, a nurse from Pittsburgh, whose legs show the white patches I've come to recognize as formerly scabbed or lesion-ridden skin. Antibiotics have left a pattern of dark patches on her calves that once got her mistaken for an AIDS patient. Since her Morgellons diagnosis, Dawn has continued working.

“I was so angry at the misdiagnoses for so many years,” she says, “being told that it was anxiety, in my head, female stuff. So I tried to spin that anger into something positive. I got my graduate degree. I published an article in a nursing journal.”

I ask her about this phrase, “female stuff.” It's like heart disease, she explains. For a long time, women's heart attacks were misdiagnosed or even ignored because doctors assumed that these patients were simply anxious or overly emotional. I realize Dawn's disease has been consistently, quietly embedded in a tradition that goes all the way back to nineteenth-century hysteria. She says her coworkers—the nurses, not the doctors—have been remarkably empathetic. Now they come to her whenever they find something strange or unexpected in a wound. She's become an expert in the inexplicable.

I ask Dawn what the hardest part of her disease has been. At first she replies in hesitant, general terms—“Uncertain future?”—but soon she settles on a more specific fear. “With the scars and stuff that I have from this,” she says, “what guy's gonna like me?”

When Dawn talks about her body as something that's done her wrong, I fall into the easy groove of identification. Her condition seems like a crystallization of what I've always felt about myself—a wrongness in my being that I could never name and so pinned on my body, my thighs, my face. This resonance is part of what compels me about Morgellons.

But my willingness to turn Morgellons into metaphor—a physical manifestation of some abstract human tendency—is dangerous. It obscures the particular and unbidden nature of the suffering in front of me. I feel how conveniently these lives could be sculpted to fit the metaphoric strictures of the essay itself.

 

I once had a specimen of my own. It was a worm in my ankle—a botfly larva from Bolivia—that was too far under the skin to see. I remember my voice in the Yale–New Haven ER saying, “There's a worm,” and I remember how everyone looked at me: kindly and without belief. Their doubt was like humidity in the air. They asked if I'd recently taken any mind-altering drugs. The disconnect felt even worse than the worm itself—to live in a world where this thing
was
, while other people lived in a world where it wasn't.

It was almost a relief to finally see the worm, bobbing out of my ankle like a tiny white snorkel. I finally knew it was real. It's the Desdemona Problem facing Othello: fearing the worst is worse than knowing the worst. You eventually start
wanting
the worst to happen.

I still remember the shrill intensity of my gratitude when a doctor verified the worm's existence. Desdemona really had fucked Cassio. It was a relief. The doctor pulled out the worm and gave it to me in a jar. The simultaneity was glorious: the worm was gone and I'd been right about it. I had about thirty minutes of peace before I started suspecting there might be another one.

I spent the next few weeks obsessed with the open wound on my ankle, looking for signs of a remaining worm. None emerged, but I didn't give up looking. Maybe the worm was tricky. It had seen what had happened to its comrade. I inspected the incision relentlessly for signs of eggs or movement. Anything I found was proof: a stray bit of Band-Aid, a glossy patch of bruised skin or scab.

It's easy to forget how Sir Thomas Browne insisted on the value of those “harsh hairs” covering the backs of his Languedoc urchins. He suggested that these strange growths quelled the “unquiet Symptoms of the Disease.” Which is to say: physical symptoms can offer their own form of relief—they make suffering visible.

I don't know what causes the pain of Morgellons, the rustling on the skin, the threads and lesions. I only know what I learned from my botfly and its ghost: it was worse when I didn't have the worm than when I did.

 

A woman named Kendra, from Memphis, called a Morgellons hotline thinking she might be crazy. Now she's here at the conference. She sits on the church steps and smokes a cigarette. She says she probably shouldn't be smoking—gesturing at the church, and then at her scarred face.

Her cheeks show sores covered with pancake makeup. But she's pretty and young, with long, dark hair and a purple boatneck shirt that makes her look like she's headed somewhere else—the swimming pool, maybe—not back into a dim Baptist church to talk about what's living under her skin.

She says the scientific presentations have all gone over her head but that she's looking forward to tomorrow's program, an interactive session with a high-powered microscope. That's why she came all this way. She's seen things—what she initially mistook for hairs and now thinks are fibers—but the microscope will see more. She'll get proof. She can't get it anywhere else. She doesn't have medical insurance, and doctors don't believe her anyway. “I've messed with a part of my chin,” she confesses. “It's almost like trying to pull out a piece of glass.” Something raw and reddish has been chalked with beige powder.

She makes a point of telling me she never had acne as a teenager. She wasn't one of the facially marred until suddenly she was. Now, at the conference, she's among others like her, and this helps.

Folie à deux is the clinical name for shared delusion. Morgellons patients all know the phrase—it's the name of the crime they're charged with. But if folie à deux is happening at the conference, it's happening en masse: an entire churchful of folks having the same nightmare.

I ask Kendra if she ever doubts herself. Maybe she's afraid of something that's not actually happening?

“It's a possibility,” she says, nodding. “But at the same time, you know, I think I've got a pretty good head on my shoulders. I don't think I've totally lost all my marbles.”

She admits that coming here has made her a little bit afraid. In two years, will she be showing up in the emergency room with all the skin peeled off her chin? Spitting up bugs in the shower? In twenty years, will she still find her days consumed by this disease?

“Everyone who is born holds dual citizenship,” Susan Sontag writes, “in the kingdom of the well and in the kingdom of the sick.” Most people live in the former until they are forced—for certain spells of time—to take up residence in the latter. Right now Kendra is living in both. She tells me she's meeting a friend downtown for sushi tonight. She can still understand herself outside the context of this disease: someone who does ordinary things, looks forward to the events of an ordinary life.

But Kendra feels a growing affinity with this community, the refuge and consolation that it offers. “We can't all be delusional,” she says.

 

Before the afternoon session begins, we get a musical interlude. A young man wearing jeans and flannel—somebody's Texan nephew-in-law—performs a rockabilly song about Morgellons. “We'll guarantee you tears and applause,” he sings. “Just take on our cause.” It seems like he's only doing this as a favor to his wife's step-aunt. Yet he launches bravely into each new song, most of them some combination of battle cry, rain dance, punch line, lament. “Doctor, doctor, won't you tell me what's the matter with me?” he sings. “I got things going wild in my body, can't you see?”

The star of the session is a physician from Laurieton, New South Wales, known casually around the conference as “the Australian.” In his talk he responds directly to the recent CDC report, which he calls a “load of hogwash” and a “rocking-horse-dung pile.” He contrasts the good guys (doctors who listen) with the bad guys (doctors who don't). The Australian listens. He is one of the good guys.

He aims to get the crowd fired up, and he succeeds. He offers himself to the room as a fighter. He coins a new piece of jargon: DOD, for delusions of doctors. This gets applause and a couple of hoots from the back.

The Australian might be an egomaniac or a savior, probably both. But what matters is the collective nerve he hits, the specter he summons—of countless fruitless visits to countless callous doctors. One senses a hundred identical wounds across this room. Not just from glass and fibers but also from smirks and muttered remarks, hastily scribbled notes, cutting gazes. I'm moved less by the mudslinging than by the sense of liberation underneath the crowd's applause.

 

This isn't an essay about whether Morgellons disease is real. That's probably obvious by now. It's an essay about what kinds of reality are considered prerequisites for compassion. It's about this strange sympathetic limbo: Is it wrong to speak of empathy when you trust the fact of suffering but not the source?

Calling Morgellons “real” generally means acknowledging that there is actual, inexplicable stuff coming up through human skin. “Real” means a fungus, parasite, bacterium, or virus—anything that might persuade the skeptical medical establishment that these patients aren't simply making the whole thing up.