Essay — From the September 2013 issue

The Devil’s Bait

Symptoms, signs, and the riddle of Morgellons

( 10 of 12 )

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 voice-over 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.

is the author of a novel, The Gin Closet (Free Press), and of The Empathy Exams: Essays, to be published next April by Graywolf.

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