No worm emerged, but I didn’t give up looking. Maybe the worm was tricky. It had seen what happened to its comrade. I inspected the wound relentlessly for signs of eggs or motion. Anything I found—a stray bit of Band-Aid, a glossy patch of bruised skin or scab—was proof. The idea of the worm—the possibility of the worm—was so much worse than actually having a worm, because I could never get it out. There was no not-worm to see, only a worm I never saw.
At the conference, when I hear that Morgellons patients often spend hours with handheld microscopes, inspecting their own skin, I think, I get that. I probably spent hours poring over my maggot wound, its ragged edges and possible traces of parasitic life. I found stray bits of hardened skin and weird threads—from bandages or who-knows-what?—and I read them like tea leaves to discern what made me feel so trapped in my own body.
I don’t offer my parasite story as decisive fable. Morgellons patients aren’t necessarily like the version of me who had a worm or like the version of me who didn’t. I honestly don’t know what causes the pain they feel: the rustling on their skin, their lesions, the endless threads they find emerging. 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.
It’s easy to forget how Sir Thomas Browne insists upon the value of those “harsh hairs” covering the backs of his Languedoc urchins. He suggests that these strange growths take off the “Unquiet Symptoms of the Disease,” “delivering” these children from their ailments. Which is to say: physical symptoms can offer some relief. They certainly offer tangible signs that lend themselves to diagnosis; and diagnosis can lend itself to closure.
The Morgellons diagnosis replaces one unquiet, lack of category, with another: lack of cure. Morgellons offers an explanation, a container, and a community. It can be so difficult to admit what satisfactions certain difficulties provide—not satisfaction in the sense of feeling good, or being pleasurable, but in granting some shape or substance to a discontent that might otherwise feel endless.
The trouble ends up feeling endless either way, of course— whether it’s got a vessel or not. Rita says Morgellons has taken over her whole life; she divides her life into before and after.
Kendra is one of the folks who called Rita’s 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—but she’s doing it anyway. Her chin and cheeks show sores covered with pancake makeup. But she’s pretty and young, with long dark hair and a purple wide-necked shirt that makes her look like she’s headed somewhere else—a day at the 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 she’s looking forward to tomorrow’s program: an interactive session with a high-magnification microscope. That’s why she came all this way. She’s seen things—what she 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. Second opinions run about half-a-month’s rent. She’s sick of trying to figure this out by herself. “I’ve messed with a part of my chin,” she confesses. “It’s almost like trying to pull out a piece of glass.” Her chin looks like something raw and reddish has been chalked with beige powder.
Kendra makes a point of telling me she never had acne as a teenager. She wasn’t one of the facially marred until she suddenly was. Now she’s among others like her. She’s glad to be here. It helps, she says, to know she’s not the only one. Otherwise she might start thinking she was crazy again.
Folie à deux is the clinical name for shared delusions. 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 more like folie à many, folie en masse, an entire Baptist church full 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 nods. “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 tells me that coming here has made her a little bit afraid: in two years, will she be showing up in some ER 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—like they already are, only more so?
She says her symptoms seem to be progressing. “Some of these things I’m trying to get out,” she pauses, “it’s like they move away from me.”
I hate the idea that Kendra would find, in this gathering, the inevitable map of some circle of hell she’s headed toward. I try to think of people who have told me about getting better, so I can tell Kendra about them. I can’t think of anyone. Kendra tells me she feels for the ones who have it worse than she does.
“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 to take up residence in the latter. Right now Kendra is living in both. She’s not entirely subsumed by sickness yet. She tells me she’s meeting a friend for sushi downtown 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.
Only a few minutes ago, Rita was telling me these are the only three days of the year when she doesn’t feel totally alone. I wonder if Kendra is following this same path—just lagging a few years behind—toward an era when she’ll live full-time in the realm of illness. She says she’s been finding it harder and harder to leave her house. She’s too embarrassed by her face. I tell her I don’t think her face is anything to be embarrassed about. “It’s harder when it’s your own body,” I add awkwardly. “I know that.”
And I do. I know something about that. It’s about your face, but it’s also about a thousand other things: an essential feeling of flaw, maybe, or a shame about taking up space, a fear of being seen as ugly or just seen—too much, too closely.
Here is the one place Kendra wants to be seen. She wants to be seen up close. She wants magnification. She wants evidence. She wants certainty.
“We can’t all be delusional,” she says.
I nod. Nodding offers me a saving vagueness—I can agree with the emotion without promising anything else. The nod can hold agnosticism and sympathy at once.
“If this weren’t happening to me,” Kendra continues, “if I was just hearing this from some regular person, I would probably think they were crazy.”
Somehow this makes me feel for her as much as anything—that she has the grace to imagine her way into the minds of people who won’t imagine hers.
“It’s not just happening to you,” I say finally. She thinks I mean one thing by that word—happening—and I think I mean another: not necessarily fibers under skin but rather some phenomenon of mind or body, maybe both in collusion, expressing god-knows-what into this lonely world.
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 croons, “just take on our cause …” He fumbles over the lyrics a few times because it seems like he’s only doing this as a favor to his wife’s step-aunt, or something like that, but he launches bravely into each song anyway: “Doctor, doctor won’t you tell me what’s the matter with me / I got things going wild in my body, can’t you see …” The songs are part battle cry, part rain dance, part punchline, part lament.
The star of the afternoon session is a physician from Laurieton known casually around the conference as “The Australian.” His talk is respond
ing directly to the CDC report, which he calls a “load of hogwash” and a “rocking horse dung pile.” He emerges as a kind of swashbuckling Aussie alligator wrestler, pinning this disease to the ground—pulling out his pidgin jujitsu to contrast the good guys (doctors who listen) with the bad guys (doctors who don’t). The Australian makes it clear: He listens. He is one of the good.
He shoots to please, to get the crowd fired up, and he succeeds. He offers himself to the room as a fighter. He’s talking to the margins and offering these margins the lyrics to an underdog anthem: Doctor, doctor won’t you tell me what’s the matter with me … He coins a new piece of jargon: DOD. Which means Delusions of Doctors. This gets applause and a few hoots from the back. The delusion? Of grandeur. The gist? That maybe delusions of parasitosis is just a symptom of another delusion: the hubris of thinking you know people’s bodies better than they do. The Australian deploys refrain as heckling: the word delusion captured and lobbed back at the ones who hurled it first.
The Australian might be an egomaniac or a savior, probably both; but what matters more to me is the collective nerve he hits and the applause he gets, the specter he summons—of countless fruitless visits to countless callous doctors. One senses a hundred identical wounds across this room. Not just pocked legs and skin ribbed with the pale tracks of scars, but also smirks and muttered remarks, hastily scribbled notes, cutting gazes seeing a category, an absurdity, where a person had once been. I’m less moved by the mudslinging and more moved by the once-mud-slung-at, the ones who are clapping, and the sense of liberation underneath their applause. Here at Westoak Baptist, the Morgies get to be people once again.
Results
This isn’t an essay about whether or not 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 call it empathy when you trust the fact of suffering, but not the source? How do I inhabit someone’s pain without inhabiting their particular understanding of that pain? That anxiety is embedded in every layer of this essay; even its language—every verb choice, every qualifier. Do people have parasites or claim to have them? Do they understand or believe themselves to have them? I wish I could invent a verb tense full of open spaces—a tense that didn’t pretend to understand the precise mechanisms of which it spoke; a tense that could admit its own limits. As it is, I can’t move an inch, finish a sentence, without running into some crisis of imputation or connotation. Every twist of syntax is an assertion of doubt or reality.
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 tr
ain 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.
The Empathy Exams: Essays Page 5
