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Jennifer Brea is about to marry the love of her life when she’s struck down by a fever that leaves her bedridden. When doctors tell her “it’s all in her head,” she turns her camera on herself as she looks for answers and fights for a cure.
Director: Jennifer Brea
Writers: Jennifer Brea, Kim Roberts20875
Stars: Jennifer Brea, Omar Wasow, Jessica l e Taylor
In an unusual instance of life inspiring both art and advocacy, Jennifer Brea became a medical patient with a confounding chronic illness and a filmmaker at exactly the same time.
As we see in the opening scenes of her debut documentary “Unrest” — an illuminating exploration, from the patient’s point of view, of myalgic encephalomyelitis (ME), more commonly known as chronic fatigue syndrome — Brea picked up her iPhone to film herself when, at age 28, she developed mysteriously debilitating, near-paralytic symptoms that were not being properly diagnosed or even fully understood by her doctors.
Before the onset of a 104.7-degree fever that left Brea weakened to the point of immobility, she was a vibrant, energetic graduate student in political economics at Harvard, months away from getting married. (“I wanted to swallow the world whole,” she says in the film.)
“About a year after the fever which triggered all of this, I was bedridden and lost 99 percent of my functions, even the ability to read or write, in a matter of weeks,” said the remarkably upbeat Brea, now 34, by phone from Los Angeles. “It was a really scary time. At first I started filming myself just as a place to put my anger and grief.”
“I kind of think someone should see this,” Brea says in a voice-over early in “Unrest.” Her calm manner is at jarring odds with the grainy handheld images of her army-crawling across her own kitchen floor, too weak after getting a drink of water to get back to the bedroom.
After seeing a succession of doctors who dismissed her symptoms as psychosomatic — as resulting from stress, anxiety, upcoming final exams or even the “psychiatric residue” of some long-forgotten trauma — Brea realized her home videos could convey her frightening experiences “where words weren’t enough. I could see my doctor writing things down in vague broad strokes, like ‘headache’ and ‘pain,’ but not really paying attention. But when I took out my iPhone and said, ‘Look what happened to me last night,’ he turned white and immediately started to order tests. I realized this story could only be told visually.”
“Unrest” evolved from a personal video diary and diagnostic helpmate to something much more ambitious: a riveting full-length feature that is equal parts medical mystery, science lesson, political advocacy primer and even a love story.
Her husband, Princeton University politics Professor Omar Wasow, plays a central role, steadfastly by Brea’s side as she contends with accepting a lifelong illness, even when she tries alternative therapies like ingesting hookworms or living for a spell outside their home in a tent.
“I was really struck by Jen’s intelligence, and the humor she retained in this otherwise serious subject matter,” said Oscar-nominated Oakland filmmaker Deborah Hoffmann (“Complaints of a Dutiful Daughter”), also an ME patient, who served as executive producer and creative adviser on Brea’s film.
Hoffmann’s story parallels many of the patient histories in “Unrest.” She was teaching documentary editing at UC Berkeley’s Graduate School of Journalism in 2009 when she got sick “in an instant. I felt terrible during one of my daily one-mile swims, came home and collapsed and have never felt the same since.”
In “Unrest,” Brea uses the stories of patients like herself and Hoffmann, in the U.S. and Europe (all bedridden, who use the Internet and Skype to connect with her), to raise awareness around an illness that affects an estimated 17 million people, 85 percent of whom are women. Despite its prevalence, ME is tragically underfunded and even still maligned by skeptics with pejoratives like “yuppie flu” (which the media used freely following a much-publicized 1984 outbreak in Incline Village, Nev.).
“Once I started to connect with my community online, I realized there was a broader social justice issue here, namely the need to redress five decades of neglect, which shouldn’t fall just on the people who are sick and can’t easily advocate for themselves,” Brea said.
Toward the end of “Unrest,” we learn from Dr. Nancy Klimas, a clinical immunologist, that tuberculosis was once dismissed by doctors as a psychosomatic illness, and even multiple sclerosis was called “hysterical paralysis” until the invention of the CAT scan in the early 1970s.
“We have a history of not believing the patient when the outside observer can’t readily see and interpret what is going on,” Brea said.
Hoffmann admitted to having her doubts about “whether Jen could successfully focus on so much in this one film, and yet she absolutely pulled it off.
“The thing about Jen? Jen sick is still more productive than many of us ever were well.”
-JESSICA ZACK, SF CHRONICLE