Authors: Leslie Jamison
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 advertised 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.
Afterward, I ask her how it went. She tells me it’s been confirmed: Rita found threads around her eyes. But she shrugs as she says it—as if the discovery is just an anticlimax; offering none of the resolution or solidity it promised.
“I’m fucking myself,” Kendra tells me, “the more I try to pick them away.”
I agree. I nod.
“The more I try to pick them away,” she continues, “the more come … like they want to show me I can’t get rid of them that easily.”
Discussion
In the end, I gave my miniscope away.
I gave it to Sandra. I gave it to her because she was sick of using her jeweler’s loupe, because she was sad she hadn’t gotten one, and because I felt self-conscious about winning one when I wasn’t even looking for fibers in the first place.
“That’s so generous,” she said to me when I gave it to her—and of course I’d been hoping she would say that. I wanted to do nice things for everyone out of a sense of preemptive guilt that I couldn’t conceptualize this disease in the same way as those who suffered from it. So I said,
Here, take my miniscope
, in hopes that might make up for everything else.
That’s so generous.
But maybe it wasn’t. Maybe it was just the opposite. Maybe I just took 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.
A confession: I left the conference early. I actually, embarrassingly, went to
sit by the shitty hotel pool
because I felt emotionally drained and like I deserved it. I baked bare skinned in the Texan sun and watched a woman from the conference come outside and carefully lay her own body, fully clothed, across a reclining chair in the shade.
Acknowledgments
I’ve left the kingdom of the ill. Dawn and Kendra and Paul and Rita remain. Now I get the sunlight and they don’t. They feed themselves horse dewormers and I don’t. But I still feel the ache of an uncanny proximity. They have no fear that isn’t mine, no dread of self I haven’t known. I kept telling them,
I can’t imagine
, and every once in a while, softer,
I can.