Authors: Leslie Jamison
My willingness to turn Morgellons into metaphor—as a corporeal manifestation of some abstract human tendency—is dangerous. It obscures the particular and unbidden nature of the suffering in front of me.
It would be too easy to let all these faces dissolve into correlative possibility: Morgies as walking emblems for how hard it is for all of us to live in our own skin. I feel how conveniently these lives could be sculpted to fit the metaphoric structure—or strictures—of the essay itself.
A woman named Rita from Memphis, another nurse, talks to me about doctors—the ones who didn’t believe her; the ones who told her she was out of luck, or out of her mind; the one who happened to share her surname but slammed a door in her face anyway. She felt especially wronged by that gesture—the specter of kinship, a shared name, cast aside so forcefully.
Rita tells me she lost her job and husband because of this disease. She tells me she hasn’t had health insurance in years. She tells me she can literally see her skin moving. Do I believe her? I nod. I tell myself I can agree with a declaration of pain without being certain I agree with the declaration of its cause.
Rita tells me she handles a Morgellons hotline. People call if they suspect they might have the disease but don’t know much about it. I ask her what she tells them. She reassures them, she says. She tells them there are people out there who will believe them.
The most important advice she gives?
Don’t take specimens in.
That’s the number one rule, she says. Otherwise they’ll think you’re crazy in a heartbeat.
I once had a specimen of my own. It was a worm in my ankle, a botfly larva I’d brought back from Bolivia. The human botfly lays its egg on a mosquito proboscis, where it is deposited—via mosquito bite—under the skin. In the Amazon, it’s no big deal. In New Haven, it’s less familiar. I saw mine emerge around midnight: a small pale maggot. That’s when I took a cab to the ER. I remember saying: “There’s a worm in there,” and I remember how everyone looked at me, doctors and nurses: kindly and without belief. Their doubt was like humidity in the air. They asked me 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
, while other people lived in a world where it wasn’t.
For weeks, down in Bolivia, I’d been living with the suspicion that I had something living under my skin. It was almost a relief to finally see it, bobbing out of my ankle like a tiny white snorkel. I finally knew it was true. It’s Othello’s Desdemona Problem: fearing the worst is worse than
the worst. So you eventually start wanting the worst possible thing to happen—finding your wife in bed with another man, or watching the worm finally come into the light. Until the worst happens, it always
happen. When it actually does happen? Now, at least, you know.
I remember the shrill intensity of my gratitude when a doctor finally verified the worm. Desdemona really had fucked someone else. It was a relief. Dr. Imaeda pulled it out and gave it to me in a jar. The maggot was the size of a fingernail clipping and the color of dirty snow, covered with tiny black teeth that looked like fuzz. The two gratifications were simultaneous: 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 left behind.
I spent the next few weeks obsessed with the open wound on my ankle, where Imaeda had cut out my maggot, looking for signs of a remaining worm in hiding. I turned from a parasite host—an actual, physical, literal host—into another kind of host: a woman with an idea, a woman who couldn’t be convinced otherwise. I made my boyfriend set up “the Vaseline test” with me each night, a technique we’d found online: placing a cap full of Vaseline over the wound so the suffocated worm, this hypothetical second worm, would have no choice but to surface for air once the cap was removed.
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
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 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.”
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
—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—
—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 responding 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
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.
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
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.