The doctors have tried to tell her every way they know how over the past three months: delicately, constantly, even urgently. But as Heather Parker sips coffee in her weathered clapboard house, she still isn’t buying that the Tourette’s-like twitches that have consumed her 17-year-old daughter, Lydia, since she woke up from an October nap are a product of a psychological disorder, not a physical one.
“I just can’t make sense of it, it’s just so obvious that something is really wrong in her body,” says Parker, a single mother with a ponytail and glasses who’s lived all her life around Le Roy, a town of 7,500 near Rochester, where, before a slew of teenage girls started reporting such tics, the only attraction of note was the Jell-O museum. Beside her sits Lydia, an unhappy-looking girl with coal-black dyed hair whose right arm swings like an orchestra conductor’s every five seconds or so. Lydia, a senior, hasn’t been in school since the tics started. She’s supposed to be going to her tutor, but often she can’t get herself out of bed, so now she may have to drop out and get a GED. “She was going to be the first person in the family to finish high school, but because of what’s happened to her health, that doesn’t look good now,” says her mother.
When the girls—there are more than 20 of them now, with four new cases last week alone—started reporting similar symptoms, it didn’t take long for the TV cameras to descend. Since January, there have been dozens of crews crowding the counter at places like Java’s on Main, the local coffee shop, clutching tripods and cappuccinos, hoping for footage of the girls and their parents. In the past few weeks, producers from Good Morning America, The Today Show, Dr. Drew, and Anderson Cooper 360° have swooped in, offering anxious moms a chance to go on air with their daughters, to beg for answers.
Could it be toxins from hydraulic fracturing (“fracking”) in the natural-gas wells that ring the girls’ school? Seepage from a 1970 cyanide spill miles away, suddenly reappearing after all these years and somehow affecting only young women? Or maybe all those folks on the Internet are right with their rants against vaccinations like Gardasil. And what about PANDAS, the elusive pediatric auto-immune infection? Surely if Erin Brockovich, the environmental crusader who has made a career out of litigating spills, sent a trusted aide to the scene to dig up soil samples from the school grounds, there was reason to suspect a cover-up. For months, the marquee on the front of the Living Waters Church on Main Street bespoke the community’s fears: “We are praying for our h.s. girls.”
But amid the soundbites from contentious public meetings and the bustle of production assistants ushering red-eyed mothers to the makeup chair lies a very inconvenient truth: the cluster in Le Roy is, by all reasonable judgment, a mass hallucination. Aided by media of all sorts, what the girls are suffering from is perhaps the ultimate disease of our era.
Over the past months, even as health officials have methodically ruled out organic causes, the cases have stubbornly spread through this working-class community. “It’s a very hard thing for parents, for people in general, to accept,” says Laszlo Mechtler, a leading neurologist in the area, who has had 18 of the girls in his office. Leaning forward in a leather chair at the end of a long day, he says that he and a female colleague recognized as soon as the girls started streaming into their office that they had “conversion disorder,” named because the mind unconsciously “converts” emotional disturbances into physical symptoms. In addition to the girls, one woman in her 30s and a teenage boy have also developed symptoms.
“This is nothing that people want to hear,” he says. Next door, in an examining room, a colleague is talking to yet another girl who tics uncontrollably as her mother stands by in horror. While as many as 15 percent of the people who come to him turn out to be suffering from a conversion disorder, “mass psychogenic illness,” as he refers to the cluster in Le Roy, is rare. When it does strike, it is almost always confined to groups of girls, often in rural areas. During the early 20th century it struck all-female factories; before that, nunneries, according to Timothy F. Jones, an epidemiologist who began studying the phenomenon after a similar outbreak in a high school in Tennessee in 1998. “This isn’t a sexist observation,” says Mechtler. “It’s just a fact. These girls in this case are under an enormous amount of stress, and that has surfaced in this difficult way. The attention, the cameras, all the social media, it has made things much worse.”
Heather Parker doesn’t get all the talk about stress. “Lydia didn’t even have a test in school the next day,” she says. In fact, things had been looking up ever since 2009, when Parker had finally gotten up the nerve to kick out the kids’ father, who has done time for assaulting his daughter. That was a bad stretch, she acknowledges, but not as bad as what happened to another girl, whose mother had discovered that her boyfriend was secretly filming her daughter undressing in her bedroom. When the mother confronted him, the guy blew his head off, right in front of the girl and her mother. “The more you ask these kids about their lives, the more you find out,” says Mechtler. “But if you ask them if there are stressors in their life they have no idea what you’re talking about.”
Treatment for conversion disorders includes therapy and medication for depression and anxiety. Some of the girls are already recovering, he says, “the ones who’ve stayed off TV, whose parents are keeping them off Facebook.”
Some parents have persuaded Erin Brockovich to send an associate back to Le Roy on Feb. 20 (Brockovich did not respond to requests for comment). And a New Jersey pediatric neurologist named Rosario Trifiletti, who has made a name for himself diagnosing PANDAS, is convinced the blood samples from some of the girls show that they have “triggers” for the disease, though the leading PANDAS expert from the National Institute of Mental Health said that’s unlikely, given that PANDAS is exceedingly rare and has never occurred in a group. Nonetheless, Trifiletti, who last week was on Nightline, is treating the girls with antibiotics. He did not return calls for comment. “It’s ridiculous,” says Mechtler, “but maybe this will give some of the girls a way to get better without shame.”
As for Parker, she disregards the talk of PANDAS. She and her daughter have accepted that the condition will remain a mystery, at least to them. For now, Lydia is on disability and Medicaid. “Overall I’m really proud of the way she’s handling it,” says Parker.
On Main Street, the townspeople seem to be wearying of the whole affair. They tolerated the media when things looked dire, “and we certainly got a lot of extra business with all the crews,” says Melissa Lytle, who works behind the counter at Java’s on Main. But as the environmental fears subside and the cases keep mounting, tempers are starting to fray. At the back table of the coffee shop, a clutch of older men working the crossword together regard with obvious disdain a Swedish producer flipping madly through a local phonebook in search of girls who’ll go on air. “If they’d just go away, maybe this would all pass,” says one of the men in a fierce whisper.
At the Living Waters Church, as a light snow begins to fall, a worker emerges to silently slide the letters off the marquee out front. In minutes the prayer for the girls is gone. In its place: “Le Roy: Still a Great Place to Live.”