I have never edited a Wikipedia article before, but I click on the “Talk” tab at the top. “The subject of this article is controversial, and content may be in dispute,” I am told, and also, “Content must be written from a neutral point of view.”
I have read a thousand Wikipedia articles, but the format of this underworld is foreign to me. Isn’t anyone supposed to be able to edit Wikipedia? Isn’t that the whole idea? But the only thing that seems editable is the Talk page, not the entry itself. I type into the textbox links to Middelveen’s studies, with a request that they be added as sources for a more balanced, “neutral point of view.”
Within a few hours, a response:
please search the archive pages of this talk page as the paper you are citing has been brought up here multiple times and rejected
I feel slapped. Rejected.
I imagine the smug little gatekeeper behind his computer. Has he seen a lesion erupt before his eyes?
It is a small comfort that I am not the only reader who has attempted to change this page. Again and again, there are little blazes of rebellion. An entry by one user, for whom I feel something akin to love, says:
Reminds me of the old adage that ‘absence of proof is not proof of absence.’
* * *
“Motherfuckers.”
That’s what Aaron says when I tell him. This is what gets to him the most. The people who are standing in between him and his dignity. The people with the power to control the story of the disease that is ravaging him.
It’s what gets to me the most, too. Because I know that the internet, the world we all live in, has been for us the greatest source of our information and the greatest source of our doubt. It has led us to the answers, and then cruelly questioned them.
In the end, I think this is what turns Aaron, what brings him, on his knees, to my side. It feels like a slippery victory. Because our team—team Morgellons—are the underdogs, or the losers, depending on how you look at it.
We have been drowning, for years, in the ocean of the internet. I want to find dry land. People who understand. I want to look at them. And I want them to look at my husband.
So when I find out in the ocean of the internet that the first International Medical-Scientific Conference on Morgellons Disease will take place in October in Augsburg, Germany, I know we will attend. The annual Morgellons conference happens every spring in Austin, I know well, from Leslie Jamison’s essay. But this is a conference for doctors and researchers as well as patients. Many of the people at the center of exposing this disease will be there. And Aaron, angry and exhausted, agrees to go.
Maybe I spin it into a vacation. We have flight vouchers! A couple of days in Munich after the conference. We will outsmart this disease, outfly American bias, and enjoy our first trip to Europe together all at once. We hire a sitter to help my dad with the boys. We order European chargers, pack all of Aaron’s meds. We will be gone all of five days. I understand that my motivations are symbolic. I book the tickets anyway.
* * *
We fly into Munich and take a train to Augsburg, a cab to the hotel. The hotel feels adequately foreign, with dark, wine-colored rugs and curtains, a curved staircase with a gold banister. We take another cab to the highest-rated vegan restaurant in Augsburg, and eat too much food, satiny soups and smoked vegetables and pickled salads, everything garnished with pubic nests of herbs. For dessert, cashew cheesecakes and lavender lattes. Aaron is wearing his leather jacket and a buoyant black-and-white checked scarf and his black-framed glasses, and with his two-week scruff of a beard he looks very handsome and, I dare say, somewhat European.
Afterward, heading back into the hotel, I spot a familiar-looking woman smoking a cigarette outside the lobby. Middle-aged, in a dress and platforms. “That’s Cindy,” I whisper to Aaron.
“Who?” Aaron whispers.
“Hi, Cindy?” I ask, approaching and extending my hand.
Cindy Casey-Holman. She is the executive director of the Charles E. Holman Foundation for Morgellons Disease. There must be a name for this, the kind of celebrity spotting where you’re the only one who knows you’re in the presence of a celebrity.
We introduce ourselves. We’ve come to the conference from Ithaca, New York.
Wow, Cindy says. I saw your names on the list. So cool that you’ve come all this way!
There’s another American, she says, from Virginia.
We chat a little about Aaron’s Morgellons symptoms, Cindy’s. She is doing better, she says—the before-and-after legs featured in so many of the foundation’s materials are hers—but she has been diagnosed with a co-infection. I’ve read her story—in the People magazine feature posted on the foundation website—and I know that her husband, Charles “Chas” Holman, died of unrelated causes while fighting for recognition of his wife’s illness. She worked as a critical care nurse for years before Morgellons disabled her. A dermatologist diagnosed her with Delusions of Parasitosis (DOP), but Chas wasn’t buying it. On the foundation website are a series of archived “rants from Chas”:
I hear from so many Morgellons patients, “He thinks I’m nuts…!” Or, “She doesn’t believe me…!” And my all-time favorite, “My whole family agrees that I’m delusional because the doctor said so!” And I really do understand how difficult this situation can be. I’ve been through it.
The trailer for the in-progress Morgellons documentary, Skin Deep, features Cindy walking in a suit in slow-motion toward what looks like a federal building, and footage from Chas and Cindy’s wedding video, and her voice cracking as she says, “He would say, ‘I will get Morgellons disease recognized in my lifetime or I will die trying. Well, he died trying but I’m going to do it.’” It’s hard for me to watch without tearing up in outrage. It’s also hard for me not to feel a longing for the simple and straightforward love and trust that seems to have bound them: he believed her. He fought for her. He died a martyr for his spouse’s pain. If I’m honest, I can admit it: I want a foundation named after me, too. I want my husband’s voice to crack as he remembers the sacrifices that I made for him. This is why we’ve come all this way, a grand gesture, an international flight on a Boeing jet skywriting, I believe you, okay?
Thank you, I tell her now, outside the hotel, as she stubs out her cigarette. Thank you for your work in bringing light to this disease.
It’s terrible, isn’t it? she says. You’re going to find a lot of hope tomorrow. A lot of information. Glad you guys are here.
Upstairs in our room, where the bed is two single beds pushed together, and the light switches feel like a new language, we look at each other.
“We’re practically the only Americans here,” Aaron says.
This means we are special, or stupid, or both.
* * *
The conference is a one-day event held in a conference room the size of my high school biology lab, white and windowed, arranged with tables-for-two and burgundy chairs facing a giant screen. We sign in, take our name tags, a folder with handouts and an agenda and a notepad with the name of the local clinic on it, a holistic clinic that focuses on vector-borne diseases. It is the Lyme clinic in Augsburg, founded by Dr. Carsten Nicolaus, that is co-sponsoring the event, with the Charles E. Holman Foundation. We find a seat.
It feels, I think, like the first day of college, waiting for the professor to begin, checking out the other students, taking stock of the room. Only one woman in a lavender short-sleeved blouse has a constellation of lavender lesions on her arms, daintier than Aaron’s, but familiar.
What I’m wondering is, do we belong here? Are these our kind of people? We are dressed in the same kinds of clothes: blazers and belts and scarves and boots. Our hair is brushed. We sip our coffee reasonably. We all say good morning to each other in English, though we are in Germany and the breadth of our homelands, which Cindy points out as she welcomes us with her opening remarks, is substantial: Italy, Wales, Poland, Brazil—twelve countries in all, among the roughly forty humans in t
his conference room. There is something embarrassing about this small number, and something touching, that we have all found our way here, by bus and plane and train, across the globe.
Latitudinally, Augsburg is only a few degrees north of Ithaca. I imagine a band connecting us—a vector. Lyme disease is as common here, in the lush, temperate forests of Europe, as it is in the northeastern United States. Many of the morning’s presentations ground the research in the Morgellons connection to Lyme disease. Indeed, Dr. Ginger Savely, who is, according to the cover of her book, “the world’s leading clinical expert” on Morgellons, came across the disease because a small but consistent percentage of her Lyme patients were presenting with lesions, slow to heal and filled with filaments. That was around 2003, shortly after biologist Mary Leitao chose the name “Morgellons” to describe the suffering of her son Drew and founded the first Morgellons Research Foundation. Two years later, Dr. Randy Lymore began research on Morgellons at the University of Oklahoma State Center for Health Sciences. In 2011 and 2012, Marianne Middelveen and Dr. Raphael Stricker began to break ground with new studies of Morgellons, just as the CDC was releasing its long-awaited study. In my memory, warped by Wikipedia, the study concluded that Morgellons disease does not exist, that delusional parasitosis is the only explanation. When I look at it now, though, I see something slightly different: what it concluded was that it was an “unexplained dermopathy” that may be delusional parasitosis—or may be a “new condition.” Inconclusive.
There were problems with the CDC study from the start, Dr. Savely wrote in her book. More than a hundred patients were studied, but they were not identified in accurate or responsible ways. Had the researchers encountered her patients, she believed, there would have been very different results.
When Leslie Jamison visited the Morgellons conference for her Harper’s story “The Devil’s Bait” in 2012, the CDC study had just been published, and the attendees were lathered into disgust and insurgence over its results. The only physician who made an appearance in the essay was an Australian doctor whom Jamison likened to a “swashbuckling Aussie alligator wrestler” who called the CDC report a “rocking horse dung pile.” The rest of her focus was on the patients, the human-interest stories of the sufferers.
So I’m surprised then by the parade of researchers at the front of the room in Augsburg. It is after all not just the first European conference but the first one deemed “Medical-Scientific.” With their PowerPoints about spirochetes and cell walls and etiologies, they are revealing a story of the science. This is what I’ve come for. I want the source. I want the treatment. I watch them all proceed through diagrams and charts and photographs, through antibiotic protocols and herbal ones, through a lot of medications that end in-dazole, through a lot of medications that end in tincture. I fill my notebook, a new purple one, with notes. “Treatment of the tickborne disease BARTONELLOSIS (whether patient tests positive for it or not) is hands-down the best approach for treatment of Morgellons Disease patients.” When Dr. Savely gets to this slide, I abandon my pencil and take notes the way my students do, the way the other attendees are doing now, by raising my cell phone and taking pictures of the screen. In some patients with severe disease, one slide says, antihelminthics are effective, when combined with antiobiotics. We don’t really know why this is, Dr. Savely admits. I don’t know what antihelminthics are until one patient in the audience raises his hand and demands in a German accent, “What about helminths?”
He’s talking about worms, I realize.
Dr. Savely seems practiced at answering this question. Morgellons filaments aren’t worms, she insists. They’re not parasites.
The patient shakes his hand angrily. “How do we know? How do we know?”
Middelveen intercedes to remind him that Morgellons filaments are known to be made up of keratin and collagen.
They may feel like worms, Dr. Savely says gently, but we have no reason to believe they are parasitic in origin.
After this little skirmish, we adjourn for lunch, the tension spilling out of the conference room. In the hotel dining hall, Aaron and I fill our buffet plates, and, like every kid on the first day of school, look for our kind. We find the American. She is a forty-something woman named Adrienne, slender and tidily dressed in a sleeveless blouse, with highlighted hair and tasteful jewelry, braided in silver and gold. We chitchat over our meals. She is retired from the military, lives in Virginia not far from my brother, and is a devoted patient of Dr. Savely. She tells us about her years of suffering with lesions. Her dogs also developed Morgellons symptoms, she says. What brought her outbreaks to a halt was a radical change in diet: she eliminated gluten. She slides her fork around her plate. On Aaron’s plate and mine are pasta and giant hunks of baguette. When she has even a little, she says now, the sores come back, around her mouth, then everywhere. She’s here to tell people, she says, though the doctors say that Morgellons doesn’t have a gluten connection. It strikes me that each of these patients has formed their own little medical team of one: running their own experiments in their bedrooms and bathrooms and kitchens, making their own observations, developing their own treatments. The half-solutions are as various as the patients.
In the lobby outside the conference room, while we wait in line for coffee, a doctor from Austria strikes up a conversation with Aaron. In his red shirt and shorts and suspenders, with his snow-white beard and glasses, he looks like Santa Claus on vacation. He asks Aaron to open his mouth, and he does. The doctor, looking resigned, says, “None of these treatments is going to work until you have that mercury out of your mouth.” He doesn’t say it like a snake oil salesman. He says it reluctantly, like a jaded mechanic who is sorry to tell you that you’re going to need a whole new transmission.
The man who exploded over the helminths, also with glasses and a white beard, stands sipping his coffee by himself. Months later, when we visit Dr. Savely’s office in D.C., Aaron will bring up the man’s outburst, and Dr. Savely will shake her head sadly. There’s always one who gets upset about worms, she’ll say. You can’t really convince them. You just try to nip it in the bud. Now, standing here watching him in the lobby, I wonder if he has spoken what more of the patients are thinking, what Aaron, perhaps, is thinking. Why are antihelminthics effective for some patients, unless there are helminths present? I remember the words from the mint-green Lyme booklet that propelled us on our journey here: “New organisms such as viruses and microscopic worms are being discovered in ticks. Their role in human illness is not yet known.”
I have never been to a medical conference before, but I’m fairly certain this one is out of the mainstream. There is something punk rock about it, a DIY ethos, with its PowerPoints that might have been made by teenagers cutting up zines and its audience the size of a straight edge matinee at CBGB. And yet even here, in this outsider’s refuge, there are keepers of power and authority, paradigm protection. There are people deemed too crazy for a Morgellons conference.
In the afternoon presentations, I start to drift off. Maybe it’s my carb-heavy lunch. Maybe it’s the exhaustion of trying to read every gesture, every specimen, every slide, for signs of subterfuge. I feel as though I’m back in the Wikipedia archives, and my defenses begin to melt. I long to have a white-coated doctor stride into the room to finish off the schedule: someone from Johns Hopkins, someone named John, a clean-shaven doctor, his neck strung with medals, with a book published by an academic press, a feature in the Times, and articles cited in PubMed—all of the status my stubborn biases demand.
And yet we have known many white-coated doctors. We have read many Wikipedia articles. That is why we are here.
At the bottom of one of the veterinarian’s slides, under a glaring graphic of a cloudy sky, is the phrase “in dubio pro reo.” When in doubt, favor the accused. Believe patients.
What about the timing of breakouts? is the question I ask, one of a dozen written in my notebook. Is there research that shows that stress brings them on? Or any other p
atterns or cycles you’re noticing?
Oh yes, says Dr. Nicolaus. They’ve certainly observed that stress contributes to acute presentations. There is a strong stress-disease relationship.
I copy this in my notebook, not fully satisfied.
When the presentations are over, a small collection of boxed scopes is passed around. They are light microscopes, at least 200x magnification: the real thing. Eagerly, attendees open the boxes and begin to examine their own skin and others’.
“Let’s get one,” I whisper to Aaron. This is what we’ve been waiting for. But he shakes his head. He doesn’t want to perform a self-examination here, in front of all of these people. There is something desperate about it, he must think. But what are we if not desperate?
So out of the corners of our eyes, we observe other people examining themselves. The researchers mingle about, assisting, observing. If it weren’t so sci-fi, it would feel like a scene out of a high school biology class. Behind us, a young couple is scoping each other. The man is examining a spot on her neck. Then, giggling, she examines a spot behind his ear. We strike up a conversation with them. She is from Czechia, he is from Brazil, and they both live together in Prague, from which they have traveled by bus. They tell us about the long, taxing trip.
“You both have it?” they ask us.
Aaron and I look at each other. “I do,” he says.
They offer to share their scope. “No, it’s okay,” Aaron says. “Thanks. You both have it?”
She does, she says. But she wonders if her boyfriend has it, too. He smiles shyly. He isn’t so sure. I don’t want to stare, but I don’t see any lesions, at least not from a few feet away.
“You guys want to get a drink after this?” I ask. I’ve been kicking myself that we didn’t ask Cindy to have a drink with us when we ran into her last night. I don’t want to miss our chance to connect with others here.
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