Susan Kouguell Speaks with ‘UNREST’ Documentary Director Jennifer Brea and Producer Lindsey Dryden

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The feature documentary Unrest is poignant and personal, and educational without being didactic. It is indeed a personal journey about Jennifer Brea and approaches a medical mystery with an examination of science and medicine that is accessible and gripping. One of the most striking elements of this documentary is that one does not need to be directly affected with ME (Myalgic Encephalomyelitis, commonly known as chronic fatigue syndrome), to appreciate this film.

I had the opportunity to interview director Jennifer Brea via Skype and meet producer Lindsey Dryden in person. They were so generous with their time; their passion, not only about educating viewers about ME but also how the film evolved, the specifics about the writing process, collaboration, fundraising, and more, underscored their generosity of spirit.

About UNREST and Jennifer Brea

Jennifer Brea is an independent documentary filmmaker based in Los Angeles. She has an AB
from Princeton University and was a PhD student at Harvard, until sudden illness left her bedridden. In the aftermath, she rediscovered her first love, film. An activist for invisible disabilities and chronic illness, she co-founded a global advocacy network, #MEAction and is a TED Talker.

Jennifer Brea was 28 and working on her PhD at Harvard and months away from marrying the love of her life when she gets a mysterious fever that leaves her bedridden and looking for answers. Disbelieved by doctors yet determined to live, she turns her camera on herself and discovers a hidden world of millions confined to their homes and bedrooms by ME. At its core, Unrest is a love story. Together, Jen and her new husband, Omar, must find a way to build a life and fight for a cure.

‘What happens when you have a disease doctors can’t diagnose?’

Jennifer gave the highest-rated talk at the 2016 TED Summit in Banff, Canada, the first ever TED Talk about ME. It launched in January 2017 and has been viewed more that 1 million times and translated into more than 25 languages.

Awards for Unrest include a Special Jury Prize for editing (Sundance Film Festival), Audience Award for Best Documentary Feature, (River Run) Grand Jury Award for Best Documentary Feature (Nashville Film Festival and Illuminate Award (Sheffield Doc/Fest). Unrest also has a companion VR piece which premiered at Tribeca and won the Jury Award for best VR at Sheffield/DocFest.

Interview via Skype with Jennifer Brea

KOUGUELL:  Tell me about your writing process for this film. How did you determine the structure for the film and did you work from any type of script or outline?

BREA:  There are three layers of writing in this film: there is the actual story structure that is essentially the collaging of found words; the scripting of the dialogue from interviews or the dialogue that’s happening in scenes; and the voiceover that can be written over and over again. We didn’t have a script per se, but it started with a storyboard. I knew the structure of the film even before we started shooting.

Brea went on to discuss seeing Debora Hoffman’s multi-character documentary Long Night’s Journey Into Day and how it influenced the structure of Unrest. (Hoffman is also an executive producer of Unrest.)

BREA: I found it worked so well because rather than spending a lot of time trying to figure out who everyone was and trying to connect with them, you’ve already had the chance to really spend time with them in their specific world, before moving on.

We knew that my story was going to be the through line and glue, and figuring out what that meant took many months and iterations. The way the film works is that the stories are ordered by tragedy in a way, ordered to create a rising action and rising complication. We always asked ourselves: ‘Why is this story in the film?’ ‘Why and where is Jen in this moment in the evolution of her overall arc?’  With the other writing, I would write some very bad temp lines that editor Kim Roberts could cut to and based on what she cut, I rewrote, and once we laid down music then that would change things. As we added different layers, we kept rewriting again and again.

SK:  Unrest opens up the conversation not only about ME but also patients with chronic illnesses and the response by medical practitioners without finger-pointing.

JB: I wanted to create a film that could start a broader conversation and that could reach beyond the patient community; that meant a lot of different things the way we were telling the story.

When I see documentaries that are polemic, they can play a role in mobilizing people who already agree with you and people who are already prone to be mobilized. That can be a fine goal, but for me with ‘Unrest’ and my own sensibilities, I wanted to leave some room for the audience to interpret the film and come to their own conclusions about what certain things mean or what should be done.

It’s a delicate balance. I’ve seen observational films about social issues that dip into a world and don’t give you any context, and it’s frustrating. I want to see what is actually happening; it’s not enough just to know it happens yet at the same time there can be too much taking the viewer’s hand by saying, this is what you need to think about. I didn’t want to do either. I wanted to have a point of view, which the film has, but also leaves some room for interpretation.

Brea and I discussed the story that takes place in Denmark and how Brea approached Per Fink, one of the subjects of the film whose vocal oppositional of the ME diagnosis offers another side of the medical debate.

BREA: We asked Per Fink: What did he think was a fair representation of himself?  What is it that he truly thinks? We didn’t need to alter it or distort it; we could just have him speak for himself. That is what we tried to do in every situation to let people speak for themselves and tell what we thought was the truth about whatever everyone’s prospective was on their lives.

SK: You successfully found a balance incorporating several devices (voice-over narration, cinéma vérité, and interviews) which can be over-utilized or distracting in many documentaries. Each device you used had a reason to be there. Let’s talk about this.

JB: The question for me was how do you use it and use it intentionally and for what reason. I knew that things needed to be explained, otherwise people would get lost in a way that would detract from the film. The narration is about bringing you inside this internal space that would have been impossible to access otherwise.

When it comes to the interviews with other subjects, they are not talking head interviews. They are actually very intimate conversations with me, so it is very motivated; that is the way I’m able to connect remotely with people. What I’m asking them is not just to reveal their own lives; I’m asking them to reveal their lives for the purpose to try to understand what is happening to me. So everything is related back to me, the structure to the film.

Each of the stories has its own set tone. It’s very easy to make Ron Davis’s story a kind of science mystery story, it was easy to make Karina Hansen’s story a kind of thriller –each story had its own genre set point and that would never have worked. Trying to find a tone for each of these very different stories in order to have them feel that they were part of the same film was one of the big challenges. What made it work is that every time we were coming back to that well of the personal; the why and the intention, and the why do we need to be here question.

Script EXTRA: Award-Winning Documentary Filmmaker Joe Berlinger and ‘Intent to Destroy’ 

Final Words

JB: I started off very angry before making the film, fueling the investigation. I started over time to eventually forgive and empathize with doctors and ended up on the side of it. Doctors haven’t been given the tools and training to properly handle this illness. What doctors’ practice is from the education they receive. The system is failing fundamentally. Most people do the best they can.

I met with Lindsey Dryden at a café near the Jacob Burns Film Center; the night before she presented a Q & A following the screening of Unrest at the Burns Center.

ABOUT LINDSEY DRYDEN, PRODUCER

An award-winning Creative Producer and Director, and founder of Little By Little Films, Dryden began her career in British TV documentaries (BBC, Channel 4, History Channel) before moving into independent films for cinema. Her acclaimed work as a Director includes Lost and Sound (SXSW) and Close Your Eyes And Look At Me (True/False), and as a Producer Little Ones (nominated for a producing award at Underwire) and Unrest (Sundance). She makes intimate, warm and surprising films about the body and the arts, most recently for Tate’s Queer British Art exhibition. A recent Filmmaker-In-Residence at JBFC, and a Fellow of Guiding Lights, IFP and HotDocs Forum, she is also a Lecturer in Film.

KOUGUELL: How did you come to work with Jen?

DRYDEN: I’ve worked with Jen now for about 3 ½ years. My background is as a director and producer in the UK. I work often on films about the body; I’m interested in the human body, the female body, how they change and the unexpected things that can happen and how one copes with that. Jen was looking for a co-producer to work on the UK story with Jessica, the young woman in the film. She contacted various documentary organizations and festivals, and I think it was the Sheffield Documentary festival, which is our biggest documentary festival, who recommended me to her.

Jen had already done an extraordinary amount of work on her own and with a small team. She did a Kickstarter; she set out to raise $50K to make this film and raised over $200K. She realized there is a huge audience waiting for this story and so she was able to expand her team.

SK: Tell me about the filmmaking process and how the film evolved.

LD: Jen would shoot one day a month and the rest of the month she would be in bed recovering from that one day. She started using this amazing system where she could be in her bed and she could film people using Skype, so we would mount a teleprompter underneath the lens, and it would reflect Jen’s face onto the lens so when people looked at the camera they could see her; she could be anywhere in the world, and in her case, it was in bed. She started interviewing people that way.

Jen had a really strong vision for the film and the story, and the approach from the very beginning. I came on board because I saw a filmmaker who never made a film before, but she absolutely knew what she was doing and had huge skills as a director. I had a lot of faith about where the story was going and a lot of people felt the same way. Sundance came on board early on with development money. The Kickstarter campaign demonstrated to other parties that there was a real story here and that combined with Jen as a presence, she is a force that is undeniable.

Can a person with this type of disability make a film, and the answer is always yes. And it grew; Ruth Ann Harnish was one of the earliest people who gave financial support.

SK: The credit of producer can be defined in different ways. In your case, how would you define your role on this film?

LD: I would define myself as a creative producer. My role is a lot about relationships with contributors, with subjects, identifying an amazing team and crew to work with, and leading that crew when we are filming in the field, as fellow Producer Patricia E. Gillespie did with the film’s North American stories, and as Co-Producer Anne Troldtoft Hjorth did in Denmark. Then it’s leading negotiations when it comes to who we want to work with and how much we can afford, and finding good fits with Jen as a director, like editors and composers. It’s also about making special, impossible things happen, like getting a hospital to allow us to put lights, cameras and cinematographers in their therapy pool!

Also, the part that I love is the editorial shaping of the film that develops over time. There’s a constant rewriting in documentary: This is where we are, this is where we hope to be. Okay, this is where we are now, this is where we’re going to go next, and that process.

My role wasn’t particularly connected to fundraising, which people often assume is a producer’s only job. Jen is the most extraordinary fundraiser and also a producer of the film herself. My role was also about distribution strategy – that’s kind of my baby. Traditionally, you might hand over a film to a distributor when it’s finished, and they hopefully do what they say they’ll do with it, but every strand of distribution is so different and our audience is so specific and important to us, and there are political sensitivities in the countries we are campaigning in. We knew from the beginning that we didn’t want to hand over that to one company who may only specialise in one area.

We did a lot of festivals around the world and a theatrical release in New York, Los Angeles, San Francisco in September, and the UK in October, and now it’s on iTunes, Amazon, and it will be broadcast on PBS in January 2018. What’s so great about that is that we’ll be able to do screening parties. We can engage with audiences who are home, and connect them with other audiences in other homes, and for a film like this and a community like this, who are often bed bound or homebound, that’s very exciting.

SK: Tell me about your unique collaboration and writing process.

LD: So much we did was remote and that process is certainly challenging. We started with Emiliano Battistaanan editor in the UK, and they were editing remotely together.

Jen always had a strong vision for the stories. The stories make sense because they were always answering questions that Jen was asking about her own life and her own experience. So you have that narrative spine of Jen’s experience changing over time; her questions, her needs, her relationships shifting, those questions and needs naturally leading to the people she talked to and got close to, who became the main characters. They were in place from very early on.

The writing process happened most intensely between Jen and editor Kim Roberts, and also our amazing creative advisor and executive producer Debbie Hoffmann, who also has ME. What’s incredible about Debbie is the narrative contribution she made and support she gave Jen from the very beginning; she was the first person on board, and you can’t really beat editorial experience like that. That would involve her at home on Skype, us in our various houses, talking through the narrative, talking about cuts, giving notes and giving feedback, which is a traditional way to work but we weren’t necessarily in the same room or the same country.

Jen and Kim went to the Sundance story and edit lab and it was after that the film became something that was good, to something that was bigger than itself.

Jen’s Wall of Science

SK: Many documentaries tend to make issues black and white, which ‘Unrest’ does not do.

LD: The film isn’t about a network of doctors who want to get into people’s way; they don’t have the resources or the time to treat people appropriately. It was extremely important for ME people around the world, some are considered malingerers, and critical of doctors, they are perceived to be a pain because they are asking for help, but they are asking for support. We were extremely mindful of that particularly in the UK where it is a huge political issue; the reputation of people with ME is horrendous. So we were mindful of not making a film that could be accused of that. There are so many good people who want to do good things. It was about pointing out the issues and injustices.

Many people said why the film didn’t end on a more hopeful note. Jen’s response was that if you tidy up the film at the end and it’s optimistic, then everyone has an easy way out when actually people have to do something right now; this isn’t fixed, this isn’t over, this isn’t better. Those ways of shaping the narrative are very important; to offer understanding of why and how things are going on, because that’s how we move forward and address them.

The film and our campaign is not about saying to doctors, ‘you’re really bad.’ It’s about saying, ‘this is what harms patients, this is what help patients, and we would really like to help you get the resources to help the patients more effectively’ and that’s in the campaign.

SK: The last few weeks in particular, a great deal of media attention has been on many women speaking out not only about sexual harassment, but also about women’s voices being heard.

LD:  I said at the film’s premiere and continue to say each time I introduce the film: ‘This is a moment where we need to listen, and listen to women. We need to listen to people who tell us they’re being honest, who are telling us their stories, we need to hear them, we need to take action.

SK: Your advice for documentary filmmakers and any final words of wisdom?

LD: I think it’s really important to consider ‘Unrest’ as a piece of cinema and not just a piece of advocacy. I would love if there is a homebound would-be filmmaker reading this article who feels inspired by what’s possible because it is possible. There are organizations who have been through the process with us, who know how to support and fund and resource incredible storytelling voices who don’t necessarily have a traditional experience of the world. How many people are there in the world like Jen with this tremendous talent that we haven’t seen yet? That’s what I want to spend my time with in cinema on the screen. I hope ‘Unrest’ is part of a movement that supports that.

Learn more about the film and to view Brea’s TED talk here.