The Empathy Exams (7 page)

Reality means something different to everyone here. Calling Morgellons “real” generally means acknowledging there is actual, inexplicable stuff coming up through human skin whose emergence can’t be explained. “Real” means fungus, parasite, bacteria, or virus, some agent causing lesions and sensations, the production of “coffee specks” of dark grain, crystalline fragments, threads, fibers, strings. In an online testimony, one woman calls her arm a sculpture garden. The trouble is that the reality of this garden—in terms of medical diagnosis, at least—depends upon doctors seeing her sculptures as well.

I find that most people at the conference understand the disease as an “us versus them” of some kind—“us” meaning patients, aligned against either the “them” of the disease itself, its parasitic agency, or else the “them” of those doctors who don’t believe in it.

The notion that Morgellons patients might be “making it up” is more complicated than it seems. It could mean anything from intentional fabrication to an itch that’s gotten out of hand. Itching is powerful: the impulse that tells someone to scratch lights up the same neural pathways as chemical addiction. In a
New Yorker
article titled “The Itch”—like a creature out of sci-fi—Atul Gawande tells the story of a Massachusetts woman with a chronic scalp itch who eventually scratched right into her own brain, and a man who killed himself in the night by scratching into his carotid artery. There was no discernible condition underneath their itches; no way to determine if these itches had begun on their skin or in their minds. It’s not clear that itches can even be parsed in these terms. Itching that starts in the mind feels just like itching on the skin—no less real, no more fabricated—and it can begin with something as simple as a thought. It can begin with reading a paragraph like this one. Itching is a feedback loop that testifies to the possibility of symptoms that dwell in a charged and uneasy space between body and mind.

I’ve come to understand that the distinction made here between “real” and “unreal” doesn’t just signify physical versus mental but also implies another binary: the difference between suffering produced by a force outside the self or within it. That’s why “self-excoriation” is such a taboo phrase at the conference, and why patients are so deeply offended by any accusation that they’ve planted fibers on their own skin. These explanations place blame back on the patient and suggest not only that the harm inflicted is less legitimate but also that it’s less deserving of compassion or aid. Parasites and bacteria are agents of otherness; easily granted volition as some sinister
they
or
them
, and—in holding this power—they restore the self to a victimized state.

The insistence upon an external agent of damage implies an imagining of the self as a unified entity, a collection of physical, mental, spiritual components all serving the good of some Gestalt whole—the being itself. When really, the self—at least, as I’ve experienced mine—is much more discordant and self-sabotaging, neither fully integrated nor consistently serving its own good.

During one discussion of possible bacterial causes for Morgellons, a woman raises her hand to make a point that seems incongruous. “Maybe there
are
no autoimmune diseases,” she says; “they just don’t make sense.” Her point: why would a body fight itself? Perhaps, she suggests, what seems like an autoimmune disorder is simply the body anticipating a foreign invader that hasn’t yet arrived. This makes sense in a way that self-destruction doesn’t. Her logic is predicated on the same vision of the self as a united whole.

Ironically enough, this insistence upon a unified self seems to testify inadvertently to its inverse, a sense of the self rising up in revolt. The insistence codes as an attempt to dispel a lurking sense of the body’s treachery, a sense of sickness as mutiny. The disease must be turned into an
other
so that it can be properly battled.

What does it look like when the self fights itself? When a person is broken into warring factions? Maybe it looks like the cures I see here; scraping or freezing the skin, hitting it with acid or lasers or electricity, scratching the itch or abrading it, taking cocktails of antiparasitic medicines meant for animals three times our size. All these strategies strike me as symptoms of an individual cleaved into conflicting pieces.

The abiding American myth of the self-made man comes attached to another article of faith—an insistence, even—that every self-made man can sustain whatever self he has managed to make. A man divided—thwarting or interrupting his own mechanisms of survival—fails to sustain this myth, disrupts our belief in the absolute efficacy of willpower, and in these failures also forfeits his right to our sympathy. Or so the logic goes. But I wonder why this fractured self shouldn’t warrant our compassion just as much as the self besieged? Or maybe even more?

I duck out of the second afternoon session and fall into conversation with two men already involved in a tense exchange near the cookie tray. Paul is a blond Texan wearing a silver-studded belt and stiff jeans. Lenny is from Oklahoma, a well-coiffed man with a curled mustache and a dark tan. Both men wear flannel shirts tucked into their pants.

Paul is a patient, but Lenny’s not. Lenny’s here because he thinks he may have found the cure. A woman came to him with the disease all over her knuckles and he treated it with a laser.

I ask him to rewind: he’s a dermatologist?

“Oh no!” he says. “I’m an electrician.”

Who knows what kind of lasers he used?
Turned it on that
, he says; the way you’d train a gun on prey. “I turned it on that,” he says, “and it killed it.”

It
killed
it.
The deictics are so vague. Nobody really knows what hurts or what helps. So much uncertainty is sheltered under the broad umbrella of pursuit.

This woman had two years of pain, Lenny says, and nothing helped her until he did. About twenty minutes into the conversation, he also mentions she was a meth addict. He assures us that his laser cleaned her out until there was “no sign left” of any fibers. Lenny mentions something about eggs. “They said you can look underneath where they’ve been. They’ll lay eggs and reappear again.” He says there were no eggs when he was done.

Paul has a strange look on his face as Lenny describes the cure. It seems he doesn’t like the sound of it. “You didn’t heal her,” he says finally. “It’s a virus.”

Lenny nods but he’s clearly taken aback. He wasn’t expecting resistance.

“I’ve been dealing with this for eight years,” Paul continues, “and I would’ve chopped off my hand, if that would have stopped it from spreading to the rest of my body.”

You get the sense—and I don’t mean this is a rhetorical or dramatic sense, but a very literal one—that he still might.

If he’d thought a laser would work, Paul continues, he would’ve used one. “But,” he says, “I know it’s more than that.”

Paul looks worse than anyone else I’ve seen. He’s been sick for eight years but only diagnosed himself with Morgellons a year ago. Before that, he had his own name for his illness: the devil’s fishing bait. He says he got it on a fishing trip. Sometimes he refers to it as a virus, other times as a parasitic infestation—but the sense of sinister agency remains the same.

Paul’s disease is different because you can see it. You can see it a little bit on everyone: an archipelago of scabs on a scalp; caked makeup over sores across a chin; blanched spots on tan calves. But Paul looks damaged in a different way and to a different degree. His right ear is the most obvious. It’s a little twisted, a little curled, almost mashed, and it has the smooth, shiny texture of scar tissue all along the juncture between ear and jaw. I realize his mangled ear is probably something Paul did to himself, trying to get something out.
Devil’s bait.
He was lured into response, into attack. His face is dotted with red pockmarks; the skin is stained with milky patterns. He’s got drop-shaped scars around his eyes like he cried them.

Paul says he came home from that first fateful fishing trip with legs covered in chigger bites. “You could feel the heat coming out of my pants,” he says. His whole body was inflamed.

I ask about his symptoms now. He simply shakes his head. “You can never tell what’s coming next.” Some days, he says, he just lies on the couch and doesn’t want to see tomorrow.

I ask whether he gets support from anyone in his life. He does, he says. That’s when he tells me about his sister.

At first, she wasn’t sympathetic. She assumed he was on drugs when he first told her about his symptoms. But she was the one who eventually discovered Morgellons online and told him about it.

“So she’s become a source of support?” I ask.

“Well,” he says. “Now she has it too.”

They experiment with different cures and compare notes: freezing, insecticides, dewormers for cattle, horses, dogs. A liquid nitrogen compound he injected into his ear. Lately, he says, he’s had success with root beer. He pours it over his head, down his face, down his limbs.

He tells me about arriving at the ER one night with blood gushing out of his ear, screaming because he could feel them—
them
again—tearing him up inside. He tells me the doctors told him he was crazy. I tell him nothing. All I want is to look at him a different way than the doctors did that day, to make him feel a different way than they made him feel. One of those ER doctors did a physical examination and noted that his mouth was dry. Paul told them he already knew that. It was hoarse from screaming at them for help.

Paul says he probably spends ten or twelve hours a day just keeping
them
at bay, meaning whatever is inside of him. His voice is full of wariness and fear.
They
lie beyond science or significance, their ceaseless motion.

Paul doesn’t seem overly impressed with the conference. Mainly because it hasn’t offered a cure, he says, though there’s a trace of satisfaction in his disappointment, as if certain suspicions—about futility, impossibility—have been confirmed.

Lenny jumps in again about the laser. Paul’s expression verges on annoyance. Perhaps the possibility of an easy fix reduces his own vexed life to a sort of gratuitous Sisyphean labor. A cure doesn’t offer hope so much as it discredits the work he’s already done—exhausting every possible option, proving each one ineffectual.

Lenny seems oblivious to this. “I’m so sincere,” he says. “I’m only saying, ‘this is what we did, and it cured her.’” He is having a hard time thinking that his news—the news of his laser—could come across as anything but good.

I sit behind Paul through the day’s final presentation. I can see he isn’t paying attention to the speaker. He’s looking at photographs on his computer. They’re all of him—his face—mostly in profile, focused on his ear. He shows them to the middle-aged woman sitting beside him. He points to a photo of some metal implement that looks like a pair of tongs: a taser. A few moments later, I hear him whisper, “These were all eggs.”

He eventually scoots his chair away from the woman and returns to what he’s probably already spent days inspecting: the spectacle of his own body splayed across the screen, parsed into a thousand tiny frames of scarred and bleeding skin. It’s a time-lapse arc of disfigurement. Even here, among others who identify with the same malady, he retreats into the terrible privacy of his own broken body. He brings others—strangers, briefly—into this quiet battleground, but it’s always just him again, eventually, drawn back into the cloister of his damage, that nearly unfathomable loneliness.

When I leave the church, I find sunlight waiting outside our windowless rooms. The world has been patient. Springtime in Austin is grackles in the trees; a nearly invisible fluttering of bats under the Congress Avenue bridge, a flickering of wings and waft of guano in blue-washed twilight. Austin is beautiful women everywhere, in scarves and sunglasses; BBQ smoke rising into thick sunlight; wind-blown oak leaves skittering across patios where I eat oysters on ice. Austin is throw-a-stone-and-you-hit-a-food-truck, each one gourmet, serving tongue-on-rice, fried avocado tacos, donuts topped with bacon. Dusk holds the clicking metronome of cowboy boots on sidewalks. People with narrative tattoos smoke in the heat. I find a grotto dedicated to the Virgin Mary with an empty beer bottle and a bag of Cheez-Its buried in the gravel.

I walk among the young and healthy and I am more or less one of them. I am trying not to itch. I am trying not to think about whether I’m itching. I am trying not to take my skin for granted. Sometimes my heart beats too fast, or a worm lodges under the skin of my ankle, or I drink too much, or I am too thin, but these are sojourns away from a kingdom I can generally claim—of being
okay
, capable of desire and being desired, full of a sense I belong in the world. But when I leave the Baptist church on Slaughter Lane, I can’t quiet the voices of those who no longer feel they belong anywhere. I spend a day in their kingdom and then leave when I please. It feels like a betrayal to come up for air.

Doubting Morgellons hasn’t stopped me from being afraid I’ll get it. I buffered myself before the conference: “If I come back from Austin thinking I have Morgellons,” I told my friends, “you have to tell me I don’t have Morgellons.” Now that I’m here, I wash my hands a lot. I’m conscious of other people’s bodies.

Then it starts happening, as I knew it would. After a shower, I notice small blue strands curled like tiny worms across my clavicle. I find what appear to be minuscule spines, little quills, tucked into the crevice of a fortune line on my palm. I’ve got these fleeting moments of catching sight, catching panic. I’m afraid to submit myself to the public microscope inspection because I’m nervous something will be found and I won’t be able to let go of it.

It actually gives me an odd thrill. Maybe some part of me
wants
to find something. I could be my own proof. Or else I could write a first-person story about delusion. I could connect to the disease with filaments of my own, real or imagined, under my skin.