{"id":16349,"date":"2018-01-04T14:01:06","date_gmt":"2018-01-04T22:01:06","guid":{"rendered":"https:\/\/www.pbs.org\/independentlens\/?post_type=blog&p=16349"},"modified":"2023-09-06T16:06:56","modified_gmt":"2023-09-06T23:06:56","slug":"filmmaker-with-chronic-fatigue-investigates-her-own-medical-mystery-in-unrest","status":"publish","type":"blog","link":"https:\/\/dipsy.pbs.org\/independentlens\/blog\/filmmaker-with-chronic-fatigue-investigates-her-own-medical-mystery-in-unrest\/","title":{"rendered":"Filmmaker with M.E.\/Chronic Fatigue Syndrome Investigates Her Own Medical Mystery in Unrest"},"content":{"rendered":"

To say filmmaker Jen Brea<\/strong> has made the most of her challenging situation would be a vast understatement. Burdened with Myalgic Encephalomyelitis\/Chronic Fatigue Syndrome (ME\/CFS), she produced her film Unrest<\/em><\/a> for the most part literally from her bed, yet managed to include people from all over the world who joined in her investigating what this disease is and how they can overcome it.<\/p>\n

Based in Los Angeles, a graduate of Princeton, Brea was a PhD student at Harvard when the crippling illness came on suddenly and left her bedridden. In the aftermath, she rediscovered her first love, film. Unrest<\/i>, which won a Special Jury Prize at the Sundance Film Festival and is\u00a0one of 15 films that has been narrowed down for consideration for an Oscar nomination, was called “a film that’s remarkably intimate, deeply edifying and a stirring call to action” in the LA Times<\/em>.<\/p>\n

An activist for invisible disabilities and chronic illness,\u00a0Brea co-founded a global advocacy network, #MEAction, and is a TED Talker. She\u00a0wrote to us about her journey in making this powerful film.<\/p>\n

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It’s probably hard to even know where to begin in answering this, but what were among some of the biggest challenges you faced in making this film, and how did you overcome them?<\/strong><\/p>\n

Through much of the production of <\/span>Unrest<\/span><\/i>, I was 90% bedridden, conducting interviews on Skype and directing remotely in collaboration with producers and crews around the world. To achieve this, we used two technical hacks. The first was an iPad teleprompter, <\/span>a sort of poor man\u2019s Interrotron. With it, we could film interviews on location with a C300 while I joined virtually, my Skype image reflected via two-way mirror over the camera lens. <\/span><\/p>\n

This allowed me to be present in our subjects\u2019 bedrooms and have intimate conversations with anyone, almost anywhere in the world. The second was a device called a Teradek, which streamed a live feed from our A camera via a closed UStream feed. \u00a0This allowed me to see in real time what our cinematographer was shooting on the ground and offer direction and feedback via <\/span>text messaging<\/span>. <\/span><\/p>\n

I don\u2019t know that anyone would chose to make a movie like this. It was extremely challenging and required intensive collaboration with my producers and crews on the ground. There was so much we could not control \u2013\u00a0but that was also already true of my daily experience of life as well as that of all the other families in Unrest. <\/i>Having done it, I know that it is not only possible to make films and tell stories even when living with profound disabilities, but that it is essential. Some of the most profound, powerful and authentic stories are those told from the inside, and technology is making filmmaking increasingly more accessible.<\/p>\n

How did you get the other people you interviewed to participate in this film, to trust you?<\/strong><\/p>\n

When you go through an experience as profoundly life-changing and isolating as severe illness or disability, there is this immediate connection you feel with people who share that same experience. It\u2019s everything you don\u2019t need to explain \u2013 about your disabilities, about your emotional experience \u2013\u00a0because you can take for granted that it\u2019s just understood. And so from the start of my conversations with our subjects, there was this sense of shared purpose and intention. We <\/span>both <\/span><\/i>wanted to tell this story and for the same reason \u2013 to save our lives and the lives of the people we love. I think it would have been a completely different process had I come and tried to tell the story from the outside. <\/span><\/p>\n