An intelligent-looking, attractive young woman goes upstairs in her home. She looks fine, but she crawls up on her hands and knees without even the energy for bodily rhythm. Watching her feels like a terrible invasion of someone’s vulnerability, but she’s the filmmaker responsible for the scene, Jennifer Brea. Her documentary is called Unrest.
Shown at film festivals and on PBS stations, it’s available online and on Netflix.
Brea has ME, the worst illness you may not know about, Myalgic Encephalomyelitis. Perhaps triggered by a virus, it’s chronic: inflamed brain, immunodeficiency, impaired cognitive function, a screwed-up nervous system, a screwed-up every system. A dire inability to make physical effort, if it can be made at all, without disabling consequences. It’s not understood, and there’s no reliable treatment. Some don’t believe it’s real.
One of the photographed faces you can glimpse in the film is my cousin’s.
But this post is about Brea’s Creativity, not her illness. Her film is bold, even harsh, in its depiction of people with ME, while being very tender to them, and offering portraits of full human beings. The illness controls everything, but they are still far more than their ME. Although she cannot see this topic from the outside, being literally dragged down by it herself, her Vision as a film artist stands firm.
There is startling Creativity in how folks articulate the bizarre experience of losing their lives while still being alive to witness the loss, to paraphrase one person. It’s also in the ways they fill the empty space where their lives used to be. A short walk in nature becomes a pilgrimage, or floating in a pool becomes an act of poetry and freedom.
They speak and make posters for rallies and sing and write as they can, as acts of resistance and education, as well as of creativity. Brea sometimes treats ME almost as a realm of possibility, and that’s brave Art. And while they do, they’re always afraid of losing even more, of collapsing in a public place as she does, of having their lives depend on medical personnel who don’t believe in or can’t care for their sick bodies.
Brea’s film mixes shocking information with moments of hope and certainly of love. It’s a balanced film meal: you may not want to swallow it, but you can digest it.
Unrest‘s ability to pull viewers into the experience of folks with ME may revolt you. It’s not easy. But your heart might open and shift along a new fault line, and make you glad it did. That’s the hard part of engaging with other people’s Creativity, or even with our own. But we do it, don’t we?
The image that doesn’t leave me is of a body that looks full of youth and sinewy strength, moving upstairs like a hundred-year-old tortoise. It doesn’t look right. It doesn’t make visual sense, like medieval peasants in movies who all have perfect white teeth. Even after many years, my cousin’s illness still surprises me, throws me, with its endless shifting surrealism. Some days the clock tells time, and some days it hangs limply over a branch in ways I struggle to process. She’ll like the Dali metaphor, I think, because she’s a person who studied and loves and used to work in art. She may never visit a museum again, but I hope she will with all my heart.
Talk about being a CPT: Jennifer Brea got this film made, and I recommend it as one tough, compassionate act of Creativity.
Please visit https://www.unrest.film/.