Unrest is, at its core, a love story. How Jen and her new husband forge their relationship while dealing with her mysterious illness is at once heartbreaking, inspiring and funny.
Unrest VR, at This Way Up 217, is an interactive non-fiction experience inspired by Jennifer Brea’s feature documentary Unrest (Sundance 2017 Special Jury Award). An immersive journey into Jen’s experience of an invisible illness, myalgic encephalomyelitis, the project contrasts the painful solitary confinement of a bedroom world with the kinetic freedom of an inner dreamscape. When you’re too sick to leave your bed, where do you go? Unrest VR premiered in the Virtual Arcade at the 2017 Tribeca Film Festival. It was also showcased at Sheffield Doc/Fest in the Immersive VR section of the Alternate Realities Exhibition, where it won the Alternate Realities VR Award.
Jennifer Brea describes Unrest
Unrest is a personal documentary. When I was 28, I became ill after a high fever and, eventually, totally bedridden. At first, doctors couldn’t diagnose me and later began telling me that either there was nothing wrong with me or that it was in my head. As I began searching for answers, I fell down this rabbit hole and discovered a hidden world of thousands of patients all around the globe, many of whom had disappeared from their lives and used the internet to connect with each other and the outside world.
We were all grappling with a disease called ME (Myalgic Encephalomyelitis), also known as Chronic Fatigue Syndrome. This wasn’t a disease I had ever really heard of, read about, or seen films made about, even though it is an extremely common condition. It’s a story that’s been flying under the radar for the last 30 years. Unrest follows the story of me and my husband, Omar. We are at the very beginning of our marriage, of our lives together, when this asteroid hits.
At the same time, I start reaching out to other patients and documenting their stories. We meet Jessica, for example, a young girl in Kent, England who has been confined to her bedroom since she was 14, and Ron Davis, a Stanford geneticist who is trying to save his son’s life in spite of some incredible obstacles. I made this film four times. At first, it was just an iPhone video diary. Those first few years, I could barely read or write but needed an outlet. And so I started creating these really intimate, raw videos. I met thousands of people, all over the world, living the same experience; isolated, without treatment or care, and often disbelieved. I thought, “How could this have possibly happened to so many people?”
There was this deep social justice issue at the heart of it. An entire community had been ignored by medicine and had missed out on the last 30 years of science. A part of the problem is that many of us are literally too ill to leave our homes and so doctors and the broader public rarely see us. That is when I decided to make a film. When we began shooting, I was completely confined to bed, so I built a global producing team, hired crews around the world, and directed from my bed. I conducted interviews by Skype and an iPad teleprompter a sort of poor man’s Interrotron. We had a live feed that (when it worked!) allowed me to see in real time what our DoP and producers were shooting on the ground. Filmmaking allowed me to travel again. As we started shooting, and I started to get to know these amazing characters, the film became about some of those burning questions that I had. What kind of a wife can I be to my husband if I can’t give him what I want to give? How do I find a path in life now that the plan I had has become impossible? If I am never able to leave my bed, what value does my life have? And I started to become interested in what happens not only to patients but to our caregivers when we, or a loved one, are grappling with a life-changing illness. These are questions we will all face at some point in our lives.
Lastly, there was a point at the middle of the edit when we had a very strong cut, but I felt unsatisfied with just seeing us, these bodies, from the outside. I knew that there was so much about this experience that an external camera just couldn’t capture. And so we started bringing in these elements of personal narration, visuals, and sound design in an almost novelistic way, to try to give the audience glimpses of our dreams, our memories. It was important to me to convey that regardless of our profound disabilities, we are all still fully human. That even lying in bed, we have these complex, inner lives.
It’s my hope that in sharing this world and these people that I have come to profoundly love, that we can build a movement to transform the lives of patients with ME; accelerate the search for a cure; and bring a greater level of compassion, awareness, and empathy to the millions upon millions of patients and their loved ones wrestling with chronic illness or invisible disabilities.
Project Creators: Jennifer Brea, Amaury La Burthe
Co-Producers: Jennifer Brea (Shella Films), Arnaud Colinart (Ex Nihilo), Lindsey Dryden (Little By Little Films), Amaury La Burthe & Grégoire Parain (Novelab by AudioGaming)
Executive Producers: Diana Barrett, Katherine Phillips
Co-Executive Producers: Nion McEvoy & Leslie Berriman
Directed by Jennifer Brea
Director, Writer – Jennifer Brea
Producers – Jennifer Brea, Lindsey Dryden, Patricia E. Gillespie, and Alysa Nahmias
Co-Producer – Anne Troldtoft Hjorth
Executive Producer & Creative Advisor – Deborah Hoffmann
Executive Producers – Ruth Ann Harnisch, Lisa Gunn, Donna Fairman Wilson, Dan Cogan, Ian Darling, Regina K. Scully, Lynda Weinman
Cinematographers – Sam Heesen, Christian Laursen
Editors – Kim Roberts, Emiliano Battista
Unrest is a co-production between Jennifer Brea’s Shella Films, based in Los Angeles, and Little By Little Films, a boutique production company based in Gloucestershire, UK, founded by Lindsey Dryden
© 2017 Canary in a Coal Mine LLC