When it's time to eat, Joe excuses himself with his meal to go upstairs in their suburban Kansas City home. On this particular day, so Joe won't eat alone, his daughter comes to join him. Natural light streams through the window and glints off the special foil that lines the walls and floor of a room made to protect Joe from the outside world.
For several years, Joe has been stricken with multiple chemical sensitivities, sometimes referred to as environmental illness. The scents or chemicals on clothing or even a piece of mail can trigger debilitating reactions like migraines or fatigue. So can the electromagnetic fields generated by common houselights and electronics like computers. The wireless signals from a cellphone in the house can leave Joe sleepless at night.
Helping him live with his illness in the modern world has thrust his loving wife, Lanie, into the role of a full-time caregiver, and the family must consider whether he'd benefit from moving alone to a community specially designed for people with his condition.
Joe is one of three sets of subjects examined in "The Sensitives," a new feature-length documentary by Missoula filmmaker Drew Xanthopoulos, that premiered at Tribeca Film Festival in New York earlier this year.
Xanthopoulos shot at least 200 hours over the course of three years and took at least 50 trips for the film. He immersed himself in their lives, wearing specially treated clothing and using minimal camera gear.
He hopes that his film, which focuses only on his subjects and no talking-head interviews, generates discussion about the syndrome and how society treats people with poorly understood chronic illnesses. He's less interested in arguing about the sources or diagnoses, many of which are controversial even among those with the condition.
"People who are sick have made documentaries about what causes it and what needs to be done, and I went for the approach of empathy being the best advocacy," he said. "As an outsider, I wanted to humanize a story that is otherwise way more commonly presented as spectacle, or fear-mongering. I didn't want to do either of those. I wanted to take the step of trying to create a bridge of empathy between people who aren't sick and can't relate to that and show them how it is relatable."
Xanthopoulos, a native of Dillon, earned his master's in filmmaking from the University of Texas, Austin. He first heard of the syndrome when he saw a photo series in the New York Times by Thilde Jensen, an artist who had the illness. After she recovered, she documented the lives of others. Xanthopoulos found the pictures "haunting," and emailed her with questions. Eventually, she invited him on a shoot.
"Thilde became kind of the gatekeeper to folks who would let me into their lives and allow me to film," he said.
He picked subjects that have the most extreme symptoms. While some people have reactions mild enough to continue living in the city, that's not the case for the people in Xanthopoulos' film.
Karen developed the condition and subsequently her adult twin sons, Sam and Nathan, have it. The three were forced to move to rural Arizona on a property far from sources of irritants. Their symptoms are still heavy enough that their house is specially treated, just like Joe's. The family depends heavily on Karen's elderly mother to deliver them goods. Sam and Nathan are visibly fatigued by their illness, spending hours a day in bed. Their outlet is writing and singing country music. It's not obvious to viewers, but Xanthopoulos shot all the footage of the twins through the window or screens. At one point, Karen describes them as "imprisoned." They don't have "good times," she says, only "good moments," small slivers that keep her going.
The most independent of the subjects is Susan, now in her 60s. She gave up her dreams of art history and world travel and moved from the Bay Area to the desert. Out in the country, her gait improved. She can walk her dog outside and use a phone or computer for a limited amount of time. She also acts as a social worker and advocate for people with her condition.
In one of the most affecting sequences, Xanthopoulos followed Susan to a disability advocacy conference in Washington, D.C.
"It was really scary for me as someone who's along for the ride, but also her only safety net," he said. They made an agreement that he would only observe her unless she absolutely needed his help.
Once in D.C., her gait degenerates again. She often must use a wheelchair. When she doesn't, she's visibly staggering, Xanthopoulos said. She must cover her mouth on the plane, and writes questions on cards she keeps in her coat sleeve in case she needs help but can't speak. After spending half the film in seclusion in their protected environments, the viewer can see and hear the sounds of the city and contemporary life through her eyes — as immediate sources of fatigue and illness.
The film dedicates much time to the caregivers: Karen and her mother; and Lanie. He hopes that their honesty about the strain makes the film accessible.
"All of a sudden, where you're pushed so far by an illness like this, I think the lessons that are learned and the things that are being tested become more universal. It becomes about how chronic illness affects people in general; it becomes about what it's like to become a caregiver rather than a spouse all of a sudden," he said.
Xanthopoulos said that after screenings, occasionally an audience member has "humbly" asked him whether he believes the illness is mental rather than physical.
He maintains that it's the wrong question. He cites the way many illnesses were attributed to other factors before the biology was properly understood: HIV and AIDS were blamed on the supposed promiscuity of its victims, primarily gay men; post-traumatic stress disorder in military veterans was caused by a "weak constitution"; going further back in time, lepers were stricken for their sins.
The contemporary corollary with chemical sensitivities is that skeptics claim that "it's all in their head," Xanthopoulos said.
He hopes the film can help break that pattern of thinking, and that "when we are confronted with something that is mysterious and scary, instead of approaching the people who are sick with suspicion and skepticism, that we approach them with empathy and concern over how they can be helped," he said. "Nobody benefits from people having to flee a community that doesn't want to help them or can't help them and have to live in isolation."