Jennifer Brea’s Unrest sheds light on the widely misunderstood Chronic Fatigue Syndrome

She writes, shoots, and directs her documentary while largely bedridden

Jennifer Brea and her husband in a still from Unrest.

The Sundance award-winning documentary Unrest opens with grainy shots of a young woman lying on the floor; her nose and forehead are out of the frame until she tries to sit up, before falling back down. The only sounds are her laboured breathing, the clicks as she turns and moves her camera, and her body sliding and crawling across the wooden floor before she pulls herself onto her bed and falls asleep.

Screened in Mumbai last week at ‘Skin Stories: love. desire. disability’, an ‘inclusive film’ festival, the documentary is a glimpse into the life of Jennifer Brea, a young woman who lives with myalgic encephalomyelitis (ME) — also known as Chronic Fatigue Syndrome. Her story was one among the several films curated by Point of View — a feminist non-profit organisation — where perceptions and experiences of disability, intimacy and love converge.

The screenings included a handful of non-fiction films as well. The mini-documentary

Nisha

and Chetan , for instance, about Nisha, confined to a wheelchair after a spinal cord injury, who finds love when she didn’t think it possible.

Shobha is the story of Shobha Hiremath, a hearing-impaired sex worker, while

Kajal narrates the story of an effervescent young woman abandoned by her own family because they thought she wasmad.

Jennifer’s

Unrest deals with a similar story of marginalisation, shedding light on the little-known disease, often diagnosed as psychosomatic, or something she was told was “all in her head”. At a point in the film, her husband Omar Wasow remarks, “One has to be careful. If you say too little, they can’t help you. And if you say too much, they think you’re a kind of mental patient.”

The illness and its effects are silenced and made invisible. Its symptoms can’t be pinpointed, and there are hardly any conversations around it. This ignorance pushes Jennifer to document herself and others like her around the world. And she writes, shoots, and directs her documentary while largely bedridden.

Painting reality

Jennifer was a 25-year-old working on her PhD. at Harvard when she and Wasow fell in love and married. One day, she contracted a 104.7° fever and though she recovered, she was left with unexplained levels of exhaustion, and extreme sensitivity to light and sound. It was dismissed as conversion disorder, where symptoms cannot be explained by a neurological disease or mental condition.

She then turned to the Internet and documented the stories of four other patients. She stitched together her narrative with theirs, and with the help of medical experts presented the attitudes surrounding ME. She traced our history of dealing with the disease. Women, who form the majority of those diagnosed with ME, were once dismissed as suffering from hysteria.

While connecting with other patients on the spectrum of Chronic Fatigue, Jennifer often used their experiences to cope with her own, recalibrating her understanding of life. In moments of complete vulnerability, she shares her uncertainty about being able to have children, and talks about her crippling guilt and her feeling that she is holding back Wasow — a professor at Princeton.

At one point in the film Wasow breaks down while talking about their newly created sense of normalcy, when he realises that people observing their situation could feel sorry for him.

But later, we also see the couple dancing under the stars. Jennifer collapses, and Wasow gently holds her, lays her down on the grass, and sits beside her in silence — their moment possibly interrupted by her illness, but certainly not ruined by it.

The writer is a Mumbai-based freelance journalist who is as obsessed with cinema as she is with gender rights.