The Best American Essays 2014

by John Jeremiah Sullivan

  That’s why “self-excoriation” is such a taboo phrase here, and why patients are so deeply offended by any accusation that they’ve planted fibers in their own skin. These explanations pin the blame back on them, suggesting not only that the harm inflicted is less real, but also that it’s less deserving of compassion or aid. In contrast, parasites and bacteria are agents of otherness, granting the legitimacy of external struggle.

  This insistence on an external source of damage implies that the self is a single coherent entity, a unified collection of physical, mental, and spiritual components. 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 of Morgellons, a woman raises her hand to make what initially seems like an incongruous point. “Maybe there are no autoimmune diseases,” she says. “They just don’t make sense.” Why, after all, 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 logic too is predicated on a vision of the self as a whole, united, its parts working in concert—yet it betrays a lurking sense of the body’s treachery, a sense of sickness as mutiny.

  What does it look like when the self fights itself? When a human being is broken into warring factions? Perhaps it looks like the experimental cures I see here: scraping or freezing the skin, hitting it with lasers or defibrillators, dousing it with acid or lighter fluid, taking cocktails of antiparasitic medicines meant for animals three times our size.

  But I wonder why this fracturing of the self shouldn’t warrant our compassion just as much as a diseased body. Or maybe even more.

  I duck out of the second afternoon session and fall into conversation with two men 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 wear flannel shirts tucked into their pants.

  Paul is a patient, and Lenny is 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 turned it on that,” he says, “and it killed it.”

  I ask if he’s a dermatologist.

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

  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 that she was a meth addict. He assures us that his laser cleaned her out until there was “no sign left” of any fibers. Paul has a strange look on his face as Lenny describes the cure. “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.”

  Paul looks worse than anyone else I’ve seen. He has his own name for his illness—the Devil’s Fishing Bait—because, 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 in that you can see it. His right ear is the most obvious sign of his affliction. It’s a little twisted, almost mashed, and it has the smooth, shiny texture of scar tissue all along the juncture between ear and jaw. His face is dotted with red pockmarks; the skin is stained with milky patterns, and he’s got teardrop scars around his eyes.

  Paul says he came home from the fishing trip with his 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.”

  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 Paul was on drugs when he told her about his symptoms. But she was the one who eventually discovered Morgellons, just about a year ago, 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 treatments 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, his face, his limbs. He tells me about arriving at the ER one night with blood gushing from his ear, screaming because he could feel them—them again, uttered with such force—tearing him up inside. One of the ER doctors did a physical examination and noted that his mouth was dry. Paul told the doctor it was from shouting at them for help.

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

  I sit behind him during 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 images of his face, mostly in profile, focused on his ear. He shows them to the middle-aged woman sitting beside him, and points to a photo of a small metal implement that looks like a pair of tongs: a Taser. A few moments later I hear him whisper, “These were all eggs.”

  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, and a waft of guano in blue-washed twilight. Austin is beautiful women everywhere, in scarves and boots, and windblown oak leaves skittering across patios where I eat oysters on ice. 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 take my skin for granted. But 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 the existence of Morgellons hasn’t stopped me from being afraid I’ll get it. Before the conference, I told my friends, “If I come back from Austin thinking I have Morgellons, you have to tell me I don’t.” 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 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.

  If you look closely enough, of course, skin is always foreign—full of bumps, botched hairs, hefty freckles, rough patches. The blue fibers are probably just stray threads from a towel, or from my sleeve, the quills not quills at all but smeared ink on the surface of the skin. But it’s in these moments of fear that I come closest to experiencing Morgellons the way patients do. Inhabiting their perspective only makes me want to protect myself from what they have. I wonder if these are the only options available to my crippled organs of compassion: I’m either full of disbelief or I’m washing my hands in the bathroom.

  I’m not the only person at the conference thinking about contagion. One woman stands up to say she needs to know the facts about how Morgellons is really transmitted. She tells the crowd that her family and friends refuse to come to her apartment. She needs proof that they can’t catch the disease from her couch. It’s hard not to speculate. Maybe her family and friends are afraid of catching her disease—or maybe they’re keeping their distance from what they understand as her obsession.

  Kendra tells me she’s
afraid of getting her friends sick whenever she goes out to dinner with them. I picture her at the sushi place—handling her chopsticks so carefully, keeping her wasabi under strict quarantine, so that this thing in her won’t get into anyone else.

  The specter of contagion serves a curious double function. On the one hand, as with Kendra, there is a sense of shame at oneself as a potential carrier of infection. But on the other hand, the possibility of spreading this disease also suggests that it’s real—that it could be proven to exist by its manifestation in others.

  This double-edged sword of fear and confirmation is on full display at the Pets with Morgellons website, one of the oddest corners of the Morgellons online labyrinth. In a typical entry, a cat named Ika introduces herself and her illness:

  I have been named [for] the Japanese snack of dried cuttlefish . . . Typically I am full of chaotic energy, however lately I have been feeling quite lethargic and VERY itchy. My best friend/mommy thinks that she gave me her skin condition, and she is so very SAD. I think she is even more sad that she passed it on to me than the fact that she has it covering her entire face.

  The litany of sick animals continues. A sleek white dog named Jazzy sports itchy paws; two bloodhounds are biting invisible fleas; a Lhasa apso joins his owner for stretches in an infrared sauna. Another entry is an elegy for an Akita named Sinbad:

  It appears that I got the disease at the same time that my beautiful lady owner got it. And after many trips to the vet they had to put me down. I know it was for my own good, but I do miss them a lot. I can still see my master’s face, right up close to mine, when the doc put me to sleep . . . I could sniff his breath and feel the pain in his eyes as tears rolled down his face. But, it’s ok. I’m alright now. The maddening itching is finally over. I’m finally at peace.

  Who knows what happened to Sinbad? Maybe he really did need to get put down; maybe he was old, or sick with something else. Maybe he wasn’t sick at all. But he has become part of an illness narrative—like lesions, or divorces, or the fibers themselves. He is irrefutable proof that suffering has happened, that things have been lost.

  The second day of the conference kicks off with a Japanese television documentary about Morgellons—known over there as cotton-erupting disease. We see a woman standing at her kitchen counter, mixing a livestock antiparasitic called ivermectin into a glass of water. The Japanese voiceover sounds concerned, and a conference participant reads an English translation: the woman knows this drug isn’t for human consumption, but she’s using it anyway. She’s desperate. We see a map of America with patches of known cases breaking out like lesions over the land, a twisted manifest destiny.

  Just as fibers attach to an open wound—its wet surface a kind of glue—so does the notion of disease function as an adhesive, gathering anything we can’t understand, anything that hurts, anything that will stick. “Transmission by Internet,” some skeptics claim about Morgellons: message boards as Pied Pipers, calling all comers. It’s true that the Internet made it possible for knowledge of Morgellons to spread and transformed its sufferers into a self-contained online community.

  A woman named Sandra pulls out her cell phone to show me a photo of something she coughed up. It looks like a little albino shrimp. She thinks it’s a larva. She photographed it through a jeweler’s loupe. She wants a microscope but doesn’t have one yet. She put the larva on a book to provide a sense of scale. I try to get a good look at the print; I’m curious about what she was reading.

  Sandra has a theory about the fibers—that the organisms inside her are gathering materials to make their cocoons. This explains why so many of the fibers turn out to be ordinary kinds of thread, dog hair, or cotton. Creatures are making a nest of her body, using the ordinary materials of her life to build a home inside her.

  Once I’ve squinted long enough at the shrimpish thing, Sandra brings up a video of herself in the bathtub. “These are way beyond fibers,” she promises. Only her feet are visible, protruding through the surface of the water. The quality is grainy, but it appears the bath is full of wriggling larvae. Their forms are hard to feel sure about—everything is dim and a little sludgy—but that’s what it looks like. She says that a couple of years ago, there were hundreds coming out of her skin. It’s gotten a little better. These days when she takes a bath, only two or three come out.

  I’m at a loss. I don’t know whether what I’m seeing are worms, or where they come from, or what they might be if they’re not worms, or whether I want them to be worms or not, or what I have to believe about this woman if they aren’t worms—or about the world, or human bodies, or this disease, if they are. I do know that I see a bunch of little wriggling shadows, and for now I’m glad I’m not a doctor or a scientist, because leaning into this uncertainty lets me believe her without needing to confirm my belief. I can dwell with her—for just a moment, at least—in the possibility of those worms, in that horror.

  I catch sight of Kendra watching Sandra’s phone. She’s wondering if this is what her future holds. I want to comfort her, to insist that everyone’s disease turns out a little different. She tells me about sushi last night: it was good. Turns out she bought a painting. She shouldn’t have, she says. She can’t afford it. But she saw it hanging at the restaurant and couldn’t resist. She shows me a picture on her phone: lush, braided swirls of oil paint curl from the corners of a parchment-colored square.

  I think but don’t say, Fibers.

  “You know,” she says, voice lowered, “it reminds me a little of those things.”

  I get a sinking feeling. It’s that moment in a movie when the illness spreads beyond its quarantine. Even when Kendra leaves this kingdom of the sick, she finds sickness waiting patiently for her on the other side. She pays $300 she can’t afford just so she can take its portrait home with her.

  The organizers are holding a lottery to give away some inexpensive microscopes: a handful of miniature ones like small black plums, and their larger cousin the EyeClops, a children’s toy. I win a mini, but I’m sheepish as I head up to the stage to claim it. What do I need a scope for? I’m here to write about how other people need scopes. Everyone knows this. I’m given a small, square box. I imagine how the scene will play out later tonight: examining my skin in the stale privacy of my hotel room, facing that razor’s edge between skepticism and fear by way of the little widget in my palm.

  I give my miniscope to Sandra. I give it to her because she is sick of using her jeweler’s loupe, because she is sad she didn’t get one, and because I feel self-conscious about winning one when I wasn’t even looking for fibers in the first place.

  “That’s so generous,” she says.

  But maybe it wasn’t generous. Maybe it was the opposite. Maybe I’d just taken hours of her life away and replaced them with hours spent at the peephole of that microscope, staring at what she wouldn’t be able to cure.

  “I can be myself only when I’m here” is something I heard more than once at Westoak. But every time I left the church, I found myself wishing these patients could also be themselves elsewhere, could be themselves anywhere. I think of Kendra, terrified by the same assurances that offered her validation. She had proof of fibers in her skin but no hope of getting them out, only a vision of what it might look like to be consumed by this disease entirely—a thousand bloody photographs on a laptop, or a soup of larvae on her phone.

  A confession: I left the conference early. I actually, embarrassingly, went to sit by the shitty hotel pool. I baked bare-skinned in the Texas sun, and I watched a woman from the conference come outside and carefully lay her own body, fully clothed, across a reclining chair in the shade.

  I’ve left the kingdom of the ill. Dawn and Kendra and Paul and Sandra remain. But I still feel the ache of an uncanny proximity. “Some of these things I’m trying to get out,” Kendra told me, “it’s like they move away from me.” Sometimes we’re all trying to purge something, and what we’re trying to purge resists our efforts. These demons belong to all
of us: an obsession with our boundaries and visible shapes, a fear of invasion or contamination, an understanding of ourselves as perpetually misunderstood.

  But doesn’t this search for meaning obfuscate the illness itself? It’s another kind of bait, another tied-and-painted fly: the notion that if we understand something well enough, we can make it go away.

  Everyone I met at the conference was kind. They offered their warmth to me and to one another. I was a visitor to what they knew, but I have been a citizen at times, and I know I’ll be one again. Now my skepticism feels like a violation of some collective trust. The same researcher who told me about “the biggest joke in the world” also told me this: “When I heard of your interest, I felt genuine hope that the real story would be told accurately and sensitively.” I can’t forget this hope. I don’t want to betray it.

  “Sit down before fact as a little child,” wrote the nineteenth-century biologist Thomas Huxley, in a passage quoted by one of the speakers at Westoak, “and be prepared to give up every preconceived notion, follow humbly wherever and to whatever abyss Nature leads, or you shall learn nothing.”

  I want to follow humbly; I want to believe everyone. But belief isn’t the same thing as compassion, or sorrow, or pity. It wasn’t until the seventeenth century that the words pity and piety were completely distinguished. And what I feel toward this disorder is a kind of piety—an obligation to pay homage, or at least accord some reverence to these patients’ collective understanding of what makes them hurt. Maybe it’s a kind of sympathetic infection: this need to go-along-with, to nod-along-with, to agree.