Authors: Leslie Jamison
If the nurse asks whether you drink, say
yes
to that too. Of course you do. Like it’s no big deal. Your lifestyle habits include drinking to excess. You do this even when you know there is a fetus inside you. You do it to forget there is a fetus inside you; or to feel like maybe this is just a movie about a fetus being inside you.
The nurse will eventually ask,
how do you feel about getting the procedure?
Tell her you feel sad but you know it’s the right choice, because this seems like the right thing to say, even though it’s a lie. You feel mainly numb. You feel numb until your legs are in the stirrups. Then you hurt. Whatever anesthesia comes through the needle in your arm only sedates you. Days later you feel your body cramping in the night—a deep, hot, twisting pain—and you can only lie still and hope it passes, beg for sleep, drink for sleep, resent Dave for sleeping next to you. You can only watch your body bleed like an inscrutable, stubborn object—something harmed and cumbersome and not entirely yours. You leave your body and don’t come back for a month. You come back angry.
You wake up from another round of anesthesia and they tell you all their burning didn’t burn away the part of your heart that was broken. You come back and find you aren’t alone. You weren’t alone when you were cramping through the night and you’re not alone now. Dave spends every night in the hospital. You want to tell him how disgusting your body feels: your unwashed skin and greasy hair. You want him to listen, for hours if necessary, and feel everything exactly as you feel it—your pair of hearts in such synchronized rhythm any monitor would show it; your pair of hearts playing two crippled bunnies doing whatever they can. There is no end to this fantasy of closeness.
Who else is gonna bring you a broken arrow?
You want him to break with you. You want him to hurt in a womb he doesn’t have; you want him to admit he can’t hurt that way. You want him to know how it feels in every one of your nerve endings: lying prone on the detergent sheets, lifting your shirt for one more cardiac resident, one more stranger, letting him attach his clips to the line of hooks under your breast, letting him print out your heart, once more, to see if its rhythm has calmed.
It all returns to this: you want him close to your damage. You want humility and presumption and whatever lies between, you want that too. You’re tired of begging for it. You’re tired of grading him on how well he gives it. You want to learn how to stop feeling sorry for yourself. You want to write an essay about the lesson. You throw away the checklist and let him climb into your hospital bed. You let him part the heart wires. You sleep. He sleeps. You wake, pulse feeling for another pulse, and there he is again.
DEVIL’S BAIT
Introduction
For Paul, it started with a fishing trip. For Lenny, it was an addict whose knuckles were covered in sores. Dawn found pimples clustered around her swimming goggles. Kendra noticed ingrown hairs. Patricia was attacked by sand flies on a Gulf Coast beach. The sickness can start as blisters, or lesions, or itching, or simply a terrible fog settling over the mind, over the world.
For me, Morgellons disease started as a novelty: people said they had a strange disease, and no one—or hardly anyone—believed them. But there were a lot of them, almost twelve thousand of them, and their numbers were growing. Their illness manifested in lots of ways: sores, itching, fatigue, pain, and something called for-mication, the sensation of crawling insects. But its defining symptom was always the same: strange fibers emerging from underneath the skin.
In short, people were finding unidentifiable matter coming out of their bodies. Not just fibers but fuzz, specks, and crystals. They didn’t know what this matter was, or where it came from, or why it was there, but they knew—and this was what mattered, the important word—that it was
real.
The diagnosis originated with a woman named Mary Leitao. In 2001, she took her toddler son to the doctor because he had sores on his lip that wouldn’t go away. He was complaining of bugs under his skin. The first doctor didn’t know what to tell her, and neither did the second, or the third. Eventually, they started telling her something she didn’t want to hear: that she might be suffering from Munchausen syndrome by proxy, because they couldn’t find anything wrong with her son. Leitao came up with her own diagnosis; Morgellons was born.
Leitao pulled the name from a treatise written by a seventeenth-century doctor named Thomas Browne:
I long ago observed in that Endemial Distemper of little Children in Languedock, called the Morgellons, wherein they critically break out with harsh Hairs on their Backs, which takes off the Unquiet Symptomes of the Disease, and delivers them from Coughs and Convulsions.
Browne’s “harsh hairs” were the early ancestors of today’s fibers, the threads that form the core of this disease. Magnified photos online show them in red, white, and blue—like the flag—and also black and clear. These fibers are the kind of thing you describe in relation to other kinds of things: jellyfish or wires, animal fur or taffy candy or a fuzz ball off your grandma’s sweater. Some are called “goldenheads” because they have a golden-colored bulb. Others look like cobras curling out of the skin, thread-thin but ready to strike. Others simply look sinister, technological, tangled. The magnification in these photos makes it hard to know what you’re looking at; if you’re even seeing skin.
Patients started bringing these threads and flecks and fuzz to their doctors, storing them in Tupperware or matchboxes, and dermatologists actually developed a phrase for this: “the matchbox sign,” a signal that the patient had become so determined to prove his own disease that he could no longer be trusted.
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). The CDC launched a full-scale investigation in 2006. Major newspapers published articles: “Is It Disease or Delusion?” (
New York Times
); “CDC Probes Bizarre Morgellons Condition” (
Boston Globe
); “Curious, Controversial Disease Morgellons Confounding Patients, Doctors Alike” (
Los Angeles Times
).
In the meantime, a Morgellons advocacy organization called the Charles E. Holman Foundation started putting together an annual conference in Austin 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 still runs the gathering. She’s still sick. The conference offers refuge—to her and others—from a world that generally refuses to accept their account of why they suffer. As one presenter wrote to me by e-mail:
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 story is even more bizarre than you may realize. Morgellons is a perfect storm of an illness, complete with heroes, villains, and very complex people trying to do what they think is right.
The CDC finally released the results of its study “Clinical, Epidemiologic, Histopathologic and Molecular Features of an Unexplained Dermopathy” in January 2012. The report is neatly carved into movements—
Introduction, Methods, Results, Discussion, Acknowledgments
—but it offers no easy conclusions. Its authors, the so-called Unexplained Dermopathy Task Force, investigated 115 patients, using skin samples, blood tests, and neurocognitive exams. Their report offers little comfort to Morgies looking for confirmation: “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 bottom line? Probably nothing there.
Methods
The Westoak Baptist Church, on Slaughter Lane, is a few miles south of the Austin I’d imagined, a city full of Airstream trailers selling gourmet donuts, vintage shops crammed with animal heads and lace, melancholy guitar riffs floating from ironic cowboy bars. Slaughter Lane isn’t vintage lace or cutting-edge donuts or ironic anything; it’s Walgreens and Denny’s and eventually a parking lot sliced by the spindly shadow of a twenty-foot cross.
The church itself is a low blue building surrounded by temporary trailers. A conference banner reads:
Searching for the Uncommon Thread.
I’ve arrived at the conference in the aftermath of the CDC report, as the Morgellons community assembles once more—to regroup, to respond, to insist.
A cluster of friendly women stand by the entrance greeting new arrivals. They wear matching shirts printed with the letters DOP slashed by a diagonal red line. Most of the participants at the conference, I will come to realize, give the wholesome, welcoming impression of no-nonsense midwestern housewives. I learn that 70 percent of Morgellons patients are female—and that women are especially vulnerable to the isolating disfigurement and condescension that come attached to the disease.
The greeters direct me past an elaborate buffet of packaged pastries and into the church sanctuary, which is serving as the main conference room. Speakers stand at the makeshift pulpit (a lectern) with their PowerPoint slides projected onto a screen behind them. The stage is cluttered with musical equipment. Each cloth-covered pew holds a single box of Kleenex. There’s a special eating area in the back: tables littered with coffee cups, muffin-greased plastic, and the skeletons of grape bunches. The room has one stained-glass window—a dark blue circle holding the milky cataract of a dove—but the colors admit no light. The window is small enough to make the dove look trapped; it’s not flying but stuck.
This gathering is something like an AA meeting or a Quaker service: between speakers, people occasionally just walk up to the podium and start sharing. Or else they do it in their chairs, hunched over to get a better look at each other’s limbs. They swap cell phone photos. I hear a man tell a woman: “I live in a bare apartment near work; don’t have much else.” I hear her reply: “But you still work?”
Here’s what else I hear: “So you just run the sound waves through your feet … you see them coming out as chunks, literally hanging off the skin? … you got it from your dad? … you gave it to your son? … My sons are still young … he has fibers in his hair but no lesions on his skin … I use a teaspoon of salt and a teaspoon of vitamin C … I was drinking Borax for a while but I couldn’t keep it up … HR told me not to talk about it … your arms look better than last year … you seem better than last year … but you feel better than last year?” I hear someone talking about what her skin is “expressing.” I hear someone say, “It’s a lonely world.” I feel close to the specter of whole years lost.
I discover that the people who can’t help whispering during lectures are the ones I want to talk to; that the coffee station is useful because it’s a good place to meet people, and 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 look disfigured at first glance. But up close, they reveal all kinds of scars and bumps and scabs. They are covered in records—fossils or ruins—of the open, oozing things that once were.
I meet Patricia, wearing a periwinkle pantsuit, who tells me how she got attacked by sand flies one summer and everything changed. I meet Shirley, who thinks her family got sick from camping at a tick-rich place called Rocky Neck. Shirley’s daughter has been on antibiotics for so long she has to lie to her doctor about why she needs them.
I meet Dawn, an articulate and graceful nurse from Pittsburgh, whose legs show the white patches I’ve come to recognize as once-scabbed or lesion-ridden skin. Antibiotics left a pattern of dark patches on her calves that once got her mistaken for an AIDS patient. Since diagnosing herself with Morgellons, Dawn has kept her full-time position as a nurse because she wants to direct her frustration into useful work.
“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 went unnoticed because they were diagnosed as symptoms of anxiety. I realize her disease is part of a complicated history that goes all the way back to nineteenth-century hysteria. Dawn says her coworkers—the nurses, not the doctors—have been remarkably empathetic; and she suggests it’s no mere coincidence that most of these nurses are women. Now they come to her whenever they find something strange or unexpected in a wound: fuzz or flakes or threads. She’s become an expert in the unexplainable.
I ask Dawn what the hardest part of her disease has been. At first she replies in general terms—“Uncertain future?”—lilting her answer into a question, but soon finds her way to a more specific fear: “Afraid of relationships,” she says, “because who’s gonna accept me?” She continues, her speaking full of pauses: “I just feel very—what’s the word … not conspicuous, but very … with scars and stuff that I have from this, what guy’s gonna like me?”
I tell her I don’t see a scarred woman when I look at her; I think she’s beautiful. She thanks me for saying so, but I can tell the compliment rang a bit hollow. One comment from a stranger can’t reclaim years spent hating the body you live in.
With Dawn I fall into the easy groove of identification—
I’ve felt that too
—whenever she talks about her body as something that’s done her wrong. Her condition seems like a crystallization of what I’ve always felt about myself—a wrongness in my being that I could never pin or name, so I found things to pin it to: my body, my thighs, my face. This resonance is part of what compels me about Morgellons: it offers a shape for what I’ve often felt, a container or christening for a certain species of unease. Dis-ease. Though I also feel how every attempt to metaphorize the illness is also an act of violence—an argument against the bodily reality its patients insist upon.