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.
If you look closely enough, of course, skin is always foreign, anyone’s—full of strange bumps, botched hairs, hefty freckles, odd patches of flush and rough. The blue fibers are probably just stray threads from a towel, or from my sleeve, the quills not quills at all but just smeared pen ink. But it’s in these moments of fear, oddly, that I come closest to experiencing Morgellons the way its patients do: its symptoms physical and sinister, its tactics utterly invasive. 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 else 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 they can’t catch the disease from her couch. It’s hard not to speculate. Her family might be afraid of catching her disease, but they might be even more afraid there’s nothing to catch; maybe they’re keeping their distance from her obsession instead. I hear so much sadness in what she says—tell me it’s not contagious, so everyone will come back—and so much hope for an answer that might make things better; that might make her less alone.
Kendra tells me she’s afraid of getting her friends sick whenever she goes out to dinner with them. I picture her eating sushi downtown—handling her chopsticks so carefully, keeping her wasabi under strict quarantine—so that this thing in her—this thing with agency, if not category—won’t get into anyone else. Her fear underscores an unspoken tension embedded in the premise of the conference itself: the notion that all these folks with a possibly contagious condition might gather together in the same confined space.
The specter of contagion actually serves a curious double function. On the one hand, as with Kendra, there is the shameful sense of 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 by its manifestation in others.
One of the strangest corners of the Morgellons online labyrinth—a complicated network of chat boards, personal testimonies, and high-magnification photographs—is the “Pets of Morgellons” website. I realize quickly that it’s neither a joke nor a feel-good photo album. It’s not just “pets of [people who have] Morgellons” but “pets [who also have] Morgellons.” 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 list continues, a litany of sick animals: a sleek white dog named Jazzy sports itchy paws; two bloodhounds are biting invisible fleas; a Lhasa apso joins his mother for stretches in an infrared sauna. One 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.
The ending paints resolution over pathos. We read, I’m finally at peace, and imagine another who probably isn’t: the master who cried when he put his dog to sleep. 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. Over there they call it “cotton erupting disease,” suggesting a stage prank—a great poof!—more than the silent sinister curling of microscopic fibers. The program has been loosely translated. 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 the English translator fills in: she knows this antiparasitic 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: disease claims community, claims the disordered as kin. 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—chat boards as pied pipers, calling all comers. It’s true that Morgellons wasn’t officially born until 2001. It’s grown up alongside the Internet. Its online community has become an authority in its own right. People here don’t necessarily agree about the particulars of their shared disease—bacteria, fungus, parasite—but they agree about a feeling of inescapability: wherever you go, the disease follows; whatever you do, it resists.
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 give a sense of scale. I try to get a good look at the print; I’m curious about what she was reading. My mind seeks the quiet hours—how this woman fills her life beyond the condition of infestation, as that beyond keeps getting smaller.
Sandra has a theory about the fibers—not that the fibers are an organism but that the organisms inside her are gathering these fibers to make their cocoons. This explains why so many of the fibers turn out to be ordinary kinds of thread, dog hairs or cotton fibers. Their danger is one of purpose, not of kind: creatures making a nest of her body, using the ordinary materials of her life to build a home inside of 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 larva. Their forms are hard to feel sure about—everything is dim and a little sludgy—but that’s actually what it looks like. She says that a couple years ago there were hundreds coming out of her skin. It’s gotten a little better. When she takes a bath, only two or three of those worms come out.
I’m really at a loss. I don’t know if 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. But I do know I see a bunch of little wriggling shadows, and for now I’m glad I’m not a doctor or a scientist or basically anyone who knows anything about anything, because this uncertainty lets me believe Sandra without needing to confirm her. I can dwell with her—for just a moment, at least—in the possibility of those worms, in that horror. She’s been alone in it for so long.
I catch sight of Kendra watching Sandra’s cell phone. She’s wondering if this is what her future holds. I tell her that everyone’s disease turns out a little different. But what do I know? Maybe her future looks like this too.
Kendra tells me about sushi last night. It was good. She had fun. She actually ended up buying a painting from the restaurant. She shouldn’t have, she says. She doesn’t have the money. But she saw it hanging on the wall and couldn’t resist. She shows me a cell phone picture: lush braided swirls of oil paint curl from the corners of a parchment-colored square. The braids are jewel toned, deeply saturated, royal purple twined with lavender and turquoise.
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 an epidemic 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 three hundred dollars she can’t afford just so she can take its portrait home with her. Whatever comfort I took in her sushi outing, it’s gone now. Like I said, disease gathers anything that will stick. Even art on restaurant walls starts to look like what’s wrong with you, even if you can’t see it—can’t see, but see everywhere.
During the morning program, the conference organizers pass around a sheet of jokes—“You might be a morgie if”—followed by a list of punchlines: “You scratch more than the dog,” “You’ve been fired by more doctors than bosses,” “An acid bath and total body shave sounds like a fun Friday night.” Some jokes summon the split between the current self and the self before its disease: “past life regression means remembering any time before Morgellons.” Others summon the split between the self and others: “at dinner your family uses oil and vinegar on their salads while you dump them on your hair and body.” Some of the jokes I don’t even get: “You can’t use anything on your computer that requires a USB port because there’s NO WAY you’re disconnecting your QX-3 Digital Blue.”
I look up QX-3 Digital Blue: it’s a microscope. The website claims you can use it to “satisfy your basic curiosity of the world around you,” which makes me think of Paul’s computer—his own body photographed over and over again—how small his world has gotten.
I don’t see any QX-3s at the conference, but the organizers are holding a lottery to give away some less expensive microscopes: a handful of miniscopes, like small black plums, and their larger cousin the EyeClops, a children’s toy. At Amazon, I find the EyeClops advertise
d in terms of alchemy. “Ordinary to Extraordinary,” the description brags, “minuscule salt crystals morph into blocks of ice; hair and carpet turn into giant noodles; and small insects become fearsome creatures.” This ad copy transforms the alchemy of Morgellons into a magic trick: examined close-up, our most ordinary parts—even the surface and abrasions of our skin—become wild and terrifying.
My name is automatically entered in the lottery, along with all the other conference attendees, and I end up winning a miniscope. I’m sheepish headed to the stage. What do I need a scope for? I’m here to write about how other people need scopes. I’m given a square box a bit smaller than a Rubik’s Cube. I imagine how the scene will play out later tonight: examining my skin in the stale privacy of my hotel room, coming face to face with that razor’s edge between skepticism and fear by way of the little widget in my palm.
At the bottom of my sheet of jokes, the title—You might be a morgie if—is given one last completing clause: “you laughed out loud and ‘got’ these jokes.” I remember that early e-mail—topic of the biggest joke in the world—and see why these jokes might matter so much—not simply because they resonate, but because they reclaim the activity of joking itself. Here Morgies are the makers of jokes, not their targets. Every joke recycles the traitorous body into a neatly packaged punchline.
So we get our page of jokes and I get some of them, but not all of them, and Sandra gets an audience for her cell phone slideshow and I get a miniscope I didn’t even want and Kendra gets a painting—and, in the end, she also gets the microscope consultation she’s been waiting for.
The Empathy Exams: Essays Page 6