One day, Jennifer Brea woke up to find that her life had been stolen from her. The newly engaged Harvard PhD student couldn't write her own name. She couldn't get out of bed; when she tried, she would collapse on the ground in pain and utter exhaustion. She could barely talk. She couldn't even draw a circle.
Despite extensive tests and examinations, doctors came up empty-handed. One neurologist diagnosed her with a psychosomatic illness, alluding to a "hidden trauma" that her subconscious had buried. Meanwhile, Brea's debilitating illness was becoming progressively worse. No one could explain what was happening to her. When medicine has no answers, where do you turn?
In a moment of desperation, Brea picked up a camera. As she began documenting her struggle from her bedroom, her claustrophobic world opened up. She shared her videos online and found an extensive community of people with similar symptoms. Their diagnosis? A little-known disorder called Myalgic encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome.
Despite the fact that more than one million Americans suffer from the illness—it is significantly more common than multiple sclerosis—funding for ME research is virtually nonexistent. Its cause and underlying biological processes are unknown. The illness is not taught in medical schools. 85% of its sufferers are women and, like Brea, are initially misdiagnosed with a contemporary version of hysteria.
Brea realized there was a story to be told about immense suffering that has been sidelined by the scientific community. For her own sake and for that of her disease's fellow victims, she decided to make a documentary. But how to make a movie when she couldn't leave her own bed? What's more, Brea knew not a single filmmaker.
"I would spend 23 hours and 45 minutes a day in bed. I had never made a film. I didn't go to film school. I didn't know a single filmmaker."
Miraculously, she assembled a global production team and filmed nearly all of Unrest, premiering at Sundance today, without leaving her bed, utilizing inventive technological methods so that she could direct the film remotely. Brea raised over $200,000 on Kickstarter by mobilizing the international ME community, which wanted its story told for the first time on a public stage. (Liz Cook, Kickstarter's Director of Documentary Film, said the campaign's success was "a direct reflection of Jen's extraordinary connection with her community, marked by her openness and generosity with sharing her personal story.")
With the sensitive, raw, and heartbreaking Unrest, Brea takes us on a journey through her own personal hell. Along the way, she explores what it means to be (and to have) a devoted romantic partner. She shows us how to recreate life and meaning after a devastating diagnosis. And most prominently, she illuminates the scientific community's intellectual rigidity and its vulnerability to sexism.
No Film School spoke with Brea at Sundance about how she taught herself to be a filmmaker from the ground up—and how doing so gave her a second chance at life.
Jennifer Brea giving a TED TalkCredit: TED
No Film School: I saw this film last night and was very moved. I have a roommate who is a med student and I started talking to her about this—like you mentioned in the film, she had never heard of it. It was shocking to me that it was really that much of a black box in the medical community. When did you first decide to pick up a camera and why?
Jennifer Brea: I first picked up a camera on my iPhone because I couldn't read or write. I would try to write a sentence and would then have to sleep for the next four hours. Whatever was happening all just seemed so intense. I had a really hard time. And yet I had been a writer my whole life and kind of had that instinct to need to write about the world around me and always kept a diary. I wasn't able to do that anymore. So I wanted to film myself with the intention that maybe one day I would go back and, if I became well, write a book. But mostly I was really isolated and very overwhelmed by everything.
I wasn't getting the care that I needed and it was a really scary time. I just needed some way to process it. I needed a place to put it because I had these thoughts and these feelings that I really didn't feel like I could share with anybody. That's kind of where it started. Every time I would go in to see a doctor and try to describe in words what was happening to me... no matter how I tried to describe it, they never really got it. It was always minimized and dismissed. So I had these videos on my phone. I took out my phone and said, "Please look at this."
It wasn't real until they could see it. That's when I started to think, "This is a story that can maybe only be told visually." That's when I started to decide to make a film, that and this realization that there were all of these other people who were living in the same conditions. There was this whole world of people that I knew nothing about. I had never heard of this disease. I was just shocked to know and to discover that so many people had been abandoned and left stuck in their homes and bedrooms for so long.
NFS: How did you initially access the online community?
Brea: I am the bane of most doctors' [existence]. I wound up just going online and googling my [symptoms]. I didn't know what else to do and I didn't have any answers or diagnosis. I started searching and searching. I actually hit upon these YouTube videos where people were describing me. They were describing themselves and in describing themselves, I was like, "Oh my god, this is exactly what I have." Suddenly, what seemed like these random symptoms started to coalesce in the sense that other people were experiencing them and they were experiencing them in the same pattern. Most of these people had the diagnosis of ME.
"Patients wanted to be able to show their loved ones my movie and say, 'This is what this disease is. This is what it's been like for the last 20 years.'"
That's when I started to research the disease, researching the diagnostic criteria and the scientific literature. I kind of stumbled into it. There are forums and Facebook groups where people hang out and connect. That was the beginning of how I came to find a specialist to diagnose me. It was also where I started to become interested in these other stories.
Whitney Dafoe appears in 'Unrest' by Jennifer Brea, an official selection of the U.S. Documentary Competition at the 2017 Sundance Film Festival.Credit: Courtesy of Sundance Institute | photo by Sam HeesenNFS: What were the first steps you took toward gathering a crew and thinking about production on the film?
Brea: On the one hand, I thought this needed to be a movie. Then, on the other hand, I couldn't leave my house. I was so sick at that point that I would spend 23 hours and 45 minutes a day in bed. I had never made a film. I didn't go to film school. I didn't know a single filmmaker. My sister-in-law—my husband's sister—did go to film school. I ended up calling her up and I was going, "I want to make a movie, but I'm too weak to hold a camera. I need someone to help me." We talked in circles for like five minutes. She was like, "You mean a DP." I said, "Maybe. What's that?" That's really where I was starting from.
Then I was able to connect with a young filmmaker in New York who had an alumni network and who agreed to partner with me to make this Kickstarter campaign. I thought in order to make a film, I need money. We started shooting a trailer. I kind of thought of this as my one shot. I wanted it to be really good. At that point, I was actually trying to leave my house to go and interview people and actually be on shoots. What I found is that if I left to go and shoot, I could be there and do interviews for 12 hours, but then I would come home and crash for 29 days. It would take me the full 29 days to recuperate.
Making the film saved my life in a thousand ways. I don't even mean that as metaphor—I mean, it literally saved my life.
That's what we did: we shot six days over the course of six months, one day a month. Then had enough footage to put together a fundraising trailer. I didn't have a line producer, so I didn't know how much films can cost, but I thought, "Okay, if I raise $50,000, I could do something that I would edit it myself."
We had the Kickstarter campaign and we met our goal in less than 48 hours. I ended up raising something like $212,000. It really went viral within this community of patients. I realized how hungry my community was to see their story told and to see their lives and their realities reflected in media, in culture. One of the things that was so hard about getting sick—you know, the physical part of it was really horrible, but then on top of that, there was this feeling of you don't exist because you cannot see yourself anywhere. There weren't stories about us. Whereas if you get diagnosed with a more recognized disease, like cancer, you can go and watch dozens of films and at least start to imagine yourself being okay.
[On top of that,] friends and family just couldn't understand what this was or what to expect. I think patients wanted to be able to show their loved ones [my movie] and say, "This is what this disease is. This is what it's been like for the last 20 years."
Jennifer Brea appears in 'Unrest' by Jennifer Brea, an official selection of the U.S. Documentary Competition at the 2017 Sundance Film FestivalCredit: Courtesy of Sundance Institute | photo by Sam HeesenNFS: After those initial interviews, you shot most of the film from your bed. How did you devise the technology you needed to direct the film remotely?
Brea: I had been watching a number of Errol Morris films just before we started shooting. There is this sort of insight that I had and my collaborators had that if you get eye contact, you don't actually have to be there. There are these poor man interrotrons that are iPad teleconference. Rather than just sitting in the next room, I could be in my bedroom, across the world, and still be able to interview the subjects myself. That was really important to me because that was a large motivation for making the film—to be able to have these intimate conversations with people who had been through similar things.
In the beginning, I would hire crews and describe the story, say, "These are the kinds of things to talk about, I want to get." I would even try to do little storyboards, which didn't really make sense. We would get the footage and then I would realize that whatever is there is what I have to work with. It was really hard to not be able to see what was being shot.
I figured there had to be a way to [see it]. I found something; a company makes these WiFi or mobile router-enabled streaming devices that plug into AC Lite output ports on cameras. It's meant to be a cheap version of satellite broadcast for local television stations. I had them broadcast the A camera stream on TV onto a private line, so I could watch from my bed. It didn't always work, but it was a way to be able to be there and be able to contribute to the process.
"Having done this, I'm amazed that anyone ever agreed to be in a documentary."
I had to learn how to give up a degree of control and be able to really trust my creative collaborators and their instincts as to what the opportunities were on the ground, but that was what that process was. Having done this, I'm amazed that anyone ever agreed to be in a documentary because it's scary to surrender that control to someone else. I don't know that I would be able to do that, but luckily I didn't have to in this case. Fortunately, everyone else in the film put a lot of trust in us, which I feel grateful for.
Omar Wasow and Jennifer Brea appear in 'Unrest' by Jennifer Brea, an official selection of the U.S. Documentary Competition at the 2017 Sundance Film FestivalCredit: Courtesy of Sundance Institute | photo by Zach Halberd.NFS: There’s a big emphasis on the power of narrative in this film. At one point, you say that “you can disappear because someone’s telling the wrong story about you.” And as you detail in the film, women have a long history of being perceived as unreliable narrators of their own stories. Even disciplines we think are impervious to this—like science and the law—are massive arbiters of narrative.
Brea: When I first started getting sick, I posted on Facebook. I was just sort of posting and posting because I didn't know what to do. I was like, "This crazy thing is going on, I'm really scared, no one takes it seriously, maybe if I just post online someone will see it and say, "Aha! That happened to me last week." Something like that.
What was interesting is that long before I found this community of patients, I started getting messages from friends I had gone to school with. I was in my late 20s at the time and these are all other women around that same age. There were this number of people who were getting sick with different things, but mostly on that auto-immune, auto-inflammatory spectrum. I started to realize very early, even before I had a diagnosis, that there was a major gender component. I felt it in my own life when I would see doctors and that I had all these other friends who were saying that was happening to them, too. Then, once I started talking and interviewing people, it came up in almost everyone's story. Like, "Go get a haircut, spend time with your husband." All of these crazy things.
I didn't know exactly at the beginning how I wanted to film the story. I was voraciously curious about everything about the disease. We interviewed a lot of scientific experts, a lot of doctors, and a lot of different patients. A lot of that didn't make it into the film. The science on this disease has been out there for 30 years. When someone tells you, "Oh, there's no evidence," it's because they haven't bothered to look. What we believe has very little to do with what we know, or what is true. It's about how we feel.
"I don't think I ever would have given myself permission to make a film had I not gotten everything taken away from me."
NFS: I read that at some point during the edit, you switched gears because you found that depicting bedridden people wasn't necessarily enough—you wanted to access their internal life.
Brea: I didn't know that I was allowed to do that! That insight really came when we went to the Sundance edit and story lab. It's a really interesting lab because the whole point of the edit and story lab is to not edit. It's really frustrating at first. You kind of go, you watch all these amazing films, and you talk about film. You just sort of keep feeling it. You're like, "Okay, can we please go back to my cut now?" But in some ways, when you're so deep in the cut, you're not thinking about the meaning and the intention. We spent a lot of time talking about the reasons for making the film and what I wanted to convey emotionally. There was a lot of crying. If you don't know what your intention is, you cannot make a movie.
Coming back to my intentions, I realized how important it was to me to convey how much time I spent when I was in bed just imagining things—how visual your brain becomes if you don't actually have access to images. When you lay in bed and you cannot move and every day you wake up and it's the same fucking thing, you feel like you're just going to lose your mind. In all my dreams, I was climbing and flying and running around like crazy. I was just always thinking and visualizing being somewhere else.
'Unrest'Credit: Sundance 2017
NFS: One of the saddest parts of the film was when you were doubting your own life's value because you were not able to physically leave the house. I thought it was interesting that throughout the process of making the film, your relationship to your own life's meaning seemed to change.
Brea: Making the film saved my life in a thousand ways. I don't even mean that as metaphor—I mean, it literally saved my life. There were so many sources of meaning and value in life that were taken from me, but the film gave me a way to still be valuable and still use something of all of those experiences and all of those desires and all of those dreams that I had had. [When I got sick] it became dangerous to even want things.
Whenever you stop focusing on yourself and you look around, everything automatically gets better. Suddenly, I was able to know that all of these other people were sick and they were living their lives. That was a real sense of hope. It wasn't some fantasy of tomorrow I'll be cured, or something, but that very realistic hope that it's possible to be this incapacitated and still be yourself, to still be human and construct a life that has meaning. That's what I think everyone needs to keep living. That's what I think really what the filmmaking did for me.
It's a crazy thing to have the bottom fall out from under you in life. Then, through that, discover this entire other love that you didn't know you could do. I don't think I ever would have given myself permission to make a film had I not gotten everything taken away from me. I literally had nothing left—what could possibly go wrong in trying to make this movie? In my old life, I would have felt like it was too risky.
For more, see our complete coverage of the 2017 Sundance Film Festival.
No Film School's video and editorial coverage of the 2017 Sundance Film Festival is sponsored by RODE Microphones.