Unrest

One of the most compelling documentaries I've ever seen. From moment one ("Princeton Veterinary Hospital") Jen and Omar reel you into the mad, new life Jen's illness has shaped for them. The movie goes beyond educating people about a poorly-understood illness. Instead, it vividly recreates the reality of Jen and the other patients, and it does so with such humor, humanity, and loving-kindness that you feel as though you know all of these people and are deeply invested in their small triumphs. An absolute must for any documentary devotee, and anyone who struggles with chronic illness or is struggling to understand the world of someone who does.

I know this is full of superlatives, but I can't help it. Ugly crying was involved when I saw this story, but it somehow manages to be uplifting instead of despairing. I can't recommend it highly enough.

My brain doesn't work as well as it once did, so I hope you'll forgive me for being blunt. This film has been a remarkable gift for the millions of people suffering from the debilitating and almost entirely ignored disease ME/CFS. It humanizes our suffering in a way that has somehow never been done in film before. And it lays out in very simple terms the decades (or even centuries) of prejudice and ignorance that has marooned us here.

At the heart of the film are the true stories of a handful of people with severe ME/CFS, people trapped in their beds for days or for years, some unable to bear even minimal human contact.

I know this hasn't been the most coherent review...so often people with ME/CFS don't say anything because we can't say it well. Watch the movie, you'll get it.

The theme of this film could not be more timely -- an accomplished, strong young woman falls ill with a mystifying malady and suddenly discovers that doctors dismiss her symptoms, misdiagnose the disease, or tell her it's all in her head. Once she deteriorates to the point of being bedridden, she realizes that she has been all but disappeared. Only through social media -- one of the few ways that allow her to remain connected to the world -- does she realize that millions around the world have been rendered similarly invisible.

Directed mostly from her bed and including footage of herself shot on an iPhone, this documentary weaves together director Jen Brea's personal story -- centered mostly around how she and her husband, Omar Wasow deal with the way her disease upends their lives -- with those of other patients. Much in the film is shocking and indeed hard to believe. It's hard to believe that some ME/CFS patients (myalgic encephalomyelitis/chronic fatigue syndrome) suffer from a form of the disease so severe that they must live in darkened rooms, unable to bear light, sound, or touch -- and that some must be fed intravenously. It's hard to believe that patients can be taken from their homes and forcibly institutionalized because health policy in some countries continues to be based on the outdated notion that the illness is psychosomatic. It's hard to believe that an illness so common (an estimated 17-30 million around the world) could be so under researched or so devastating.

I could not be more pleased to learn that Unrest has made the short list for the Oscars best documentary category. It's an underdog -- the film got its start through a Kickstarter campaign and has gone from a Sundance audience award, to place on PBS's Independent Lens lineup, to the notice of the Academy. Furthermore, it's directed by a woman of color who is disabled and is speaking on behalf of an extraordinarily disenfranchised group of people similarly disabled by the disease. It's easier to let people disappear, easier to imagine that it will never be you. But it's also #timeforunrest.

I am one of the millions missing, but one who is not bedridden, and I can still work, though at a much diminished capacity. Jennifer's attempt to describe her life and her illness is much needed. I was in tears as she described the difficulty of getting a diagnosis. When I got sick 25 years ago, it took me 6 years to be diagnosed. I was hoping that diagnosis was a little further along than it apparently is in the medical community. That was a major disappointment for me. I wish she had talked more about the cognitive issues. Yes, ME is physical, but the brain fog, the inability to concentrate or stay on task, the disorganization that came with the condition, the struggle to perform cognitive tasks that were once easy (reading maps, remembering how to get somewhere you should be able to, forgetting appointments, short-term memory problems, etc. etc), all add another layer to an otherwise debilitating condition. My accolades for Jennifer for the supernatural strength and commitment it required to put together a great snapshot of our shared nightmares.

Brilliant film. Compelling, informative, inspiring. Not to be missed.