Jen Brea’s multi-award winning film Unrest is impacting millions of people around the world. Remarkably, she wrote and directed the movie while she was bedridden and severely disabled.
Unrest’s story is Jen’s personal story and the story of millions, myself included, who have myalgic encephalomyelitis (M.E.), formerly known by the catastrophically inaccurate name “chronic fatigue syndrome.”
If you don’t have M.E., you may think, “What the heck? I’m fatigued, too.” But I must correct you. The U.S. Centers for Disease Control threw the name “chronic fatigue syndrome” at the illness before there was meaningful science. They saw what looked like big fatigue and issued a name that reflected how little they knew. The consequence: patients have been mocked and stigmatized as lazy and crazy for decades. Jen is among a group of heroic writers, artists, journalists, doctors and scientists who are changing that legacy. Now even the CDC uses the term myalgic encephalomyelitis (which has long been the term in the rest of the world) and agrees that it is a very real illness with a completely physiological basis and not at all “in the mind.”
When it comes to M.E., some have mild cases and are able to work and carry on with life if they build in ample rest time. For the majority, M.E. is disabling and feels like having the flu every day. Some days it feels like a light flu and one can get out, maybe run some errands or see friends. Other days bring complete disability. Imagine all the worst cases of flu you’ve ever had. Now add them together. That’s a typical M.E. day for many.
Pain and severe neurological, cardiac and immune system complications can make it impossible even to navigate one’s house. A subset of patients spend their lives on the most severe end of the spectrum, confined to their homes and requiring around-the-clock care. There is no cure or government-approved treatment.
The specter of anything like this is not typically on anyone’s radar. Until it is.
When Jen became ill, she was a Princeton grad working towards a Ph.D. at Harvard University. She was engaged to the love of her life, the brilliant tech guru Omar Wasow. They met at a Harvard workshop about political violence, both committed to changing the world for the better. They would accomplish that goal, but not in a way either could have imagined.
Today, the film Jen created from her bed has traveled the world, won awards, including at Sundance, and transformed into an international movement. One of Unrest’s campaigns is “Millions Missing” which includes protests around the globe demanding parity in research funding and medical school curricula, both of which are woefully meager given the severity of the illness and the number of patients affected. (Estimates are 1-2.5 million in the U.S. and millions more worldwide.)
Beginning this month, Unrest is being released in theaters nationwide, including at Facets Cinematheque in Chicago from Friday, September 29- Thursday, October 5.
I was fortunate to attend a virtual screening of Unrest. It is riveting in its raw beauty and honesty and a very real look at what happens when fate randomly snatches your “Plan A” and forces you to rewrite your life. As Jen emphasized in a post-screening chat, the film is not about sick bodies. It is about human beings and our stunning ability to marshal our inner resources and to connect with others even in the worst of circumstances, and to take control of our own narrative and bravely show it to the world.
Jen kindly took time and energy to speak with me by phone about how it feels to lose your health, your dreams, the life you’d planned … and then to shake up the world for the benefit of millions.
Teme: Who should see Unrest?
Jen: The film resonates deeply with everyone who sees it. Patients feel a weight being lifted. There’s something validating about going to a theater and seeing your experience reflected back to you on the big screen. It’s very painful to struggle with something and have your culture not reflect it back to you or talk about it. Patients feel that they finally get to see themselves in film.
It’s the same for caregivers. Unrest focuses on how the disease affects whole families, and caregivers feel like they are finally being seen.
We’ve also had profound conversations with doctors at screenings who stood up and said, “I had no idea. My perceptions have been completely transformed.” We’ve had scientists in the audience who get excited. A number of them have started to engage with conferences and research teams.
At the end of the screening, whether it is policymakers, the public, or people from our community, there’s a feeling of being moved and inspired and of feeling angry and wanting to contribute something.
That’s everything I hoped for. Our big question becomes, “How to convert that eye-opening transformational experience into mobilization? How do you mobilize doctors? How do you mobilize scientists? How do you mobilize the public?” That’s really what the campaign is about.
I also think that the film resonates as a piece of art, a point which sometimes gets dropped in the conversation. Art is how we tell stories and how we move people. Our audience is also filmmakers and artists and writers. I hope that people from those communities in Chicago will also turn out for the film.
IMPORTANT THINGS ABOUT MYALGIC ENCEPHALOMYELITIS
Teme: What do you most want people to know about M.E.?
Jen: I want people to know that this disease is serious and debilitating, and that the millions of people who suffer from it have been neglected and forgotten by science and medicine.
There are many forms of invisibility. There’s the invisibility of looking well. With M.E., if you’re only mildly to moderately affected and having a good day, you can look completely normal. But your family, your friends, and your coworkers don’t see you when you’re crashing and can’t get out of bed, or when you’re too sick to leave your home.
Then there are patients on the severe end of the spectrum who can’t ever leave their homes, so no one can see them.
The film tries to bring you to the inside of these experiences and to leave the audience with the understanding that this is a serious, serious disease.
Another goal is to remove the stigma and misunderstanding around this disease. It’s hard enough just to be sick, just to be disabled, to carry the challenge of a body that gives out on you.
All of us will become disabled if we live long enough. It’s part of the human experience. In that sense, illness and disability are normal. But what is not normal is the stigma and the discrimination and the neglect.
If we could just lift those things off of patients …when you’re diagnosed if your community would understand what a profound life-changing event you’re experiencing and if they rallied around you and sent you flowers and brought you lasagna and knew how to ask about how you’re feeling … If there were marathons, and they would go out and run for you and fundraise … all the things that happen when you get cancer or other diseases that the public better understands.
If we could just lift the burden of the misunderstanding and stigma, that would be real progress. When you start with that, then everything else can come; the fundraising, and the advocacy, and the real treatments and a cure.
EXPLAINING M.E. WHEN PEOPLE MISUNDERSTAND
Teme: What is the biggest misconception about M.E.?
Jen: There are a lot of misconceptions, but the biggest challenge is that the core symptom of post-exertional malaise is hard to understand. It’s actually easy to understand if I can have two minutes with you to explain it. Most people won’t give that much time. They hear “chronic fatigue syndrome,” or “chronic fatigue,” and they think they already know what it means. We all experience “fatigue” from time to time, but as you know, post-exertional malaise is something different.
Teme: I always have such a hard time explaining it myself. How do you explain it?
Jen: I say that I’m like a broken iPhone battery. The battery looks like it’s charged, but actually only ever charges to twenty percent. As long as I don’t use up that twenty percent I can function, but as soon as the battery goes down to zero, I crash. At that point, I’m literally going beyond my personal metabolic limit, and the result is that my symptoms become significantly worse. I might not even have the ability to lift my head from my pillow. This metabolic limit affects how much energy your cells can generate, so it’s going to affect your brain, your gut, your heart, your lungs, every part of your body.
The only way to function is to stay within the limits of the energy that you have. A healthy person has a battery that is capable of charging one hundred percent and even the ability to automatically recharge. My battery has a twenty percent capacity and I have to make sure that I don’t go to the “red.” If I do, then catastrophic things happen.
Teme: Yes, that’s a brilliant explanation. I can feel how limited that battery is every day and I can usually tell how close I am to crashing.
Jen: Exactly. As you become sick, you learn what those boundaries are. People want to tell us, “But if you just push yourself a little harder …”, or “come on, you can go for that walk. It will be fine.”
But the lesson for medicine and loved ones is that it’s important to listen to patients’ stories and to hear what they say about their own bodies.
JEN’S DECISION TO CREATE UNREST
Teme: When was the moment you knew you would take this experience and make the film?
Jen: It started off as me filming myself on my iPhone and doing video diaries. I didn’t know what I was going to do with them. I thought maybe someday I would write a book. Then one day, I was seeing a new doctor and trying to describe to him how sometimes I would collapse and be too weak even to call out for help. I was trying to describe it and he was just not paying attention.
I took out my phone and showed him, “This is what happens to me.” When he saw the video, he was shocked and kind of went white and then he started mobilizing, “We need to get you a spinal tap, and an MRI,” etc. That’s when it occurred to me that we can tell this story. When you have a disease and you’re not heard, it’s easy to think that people are just callous or arrogant. But if people truly understood and could see what it’s like to live this disease, then things would have to change.
Sharing that video was effective in a way that just telling my story wasn’t. Showing this video to the doctor transformed the way that he was engaging with me, and that made me think that this story has to be told in a visual medium and that there was no other way to truly get people to understand.
FROM MOVIE TO MOVEMENT
Teme: When did you know the film could become a movement?
Jen: At first I thought, “I’ll make a film, and then I’ll put it on YouTube and then it will change things.” The initial intention of this film was not nearly as ambitious as what it became. I was so sick and I didn’t have money to make a massive documentary and I also didn’t have any experience. I was kind of naïve.
In 2013, I started applying to every documentary film fund and fellowship. Many of them have workshops and retreats and things like that. I started to work on the idea of an impact campaign. I thought about how a social-issue documentary is good at bringing people together and starting a conversation. But how are you going to take that conversation and turn it into action?
I noticed how people used films to talk about sexual assault, about the environment, and about a number of topics and then designed campaigns around them. It helped me to see that this film could actually be a way to build a movement.
Successful movements are often led by people who are impacted, but also spill over into the public space and bring in allies and the energies of people outside the core group. I started to see that we could build a movement that included patients, caregivers, allies, doctors, scientists, and policymakers because I think when people see the film, they want to help.
My hope is that we can change how this illness is viewed. It’s going to take a lot of people mobilizing.
My hope for Chicago is that everyone will bring their friends and family, but also reach out to medical schools and healthcare providers and local health policy leaders and media, and use these screenings as opportunities to build relationships and start important conversations locally.
That’s why I’m so glad that you are mobilizing in Chicago. I’m excited to see what you guys make of this opportunity.
HOW TO FIND RESILIENCE
Teme: What is the source of your resiliency and what is your advice on building resiliency?
Jen: In order to be resilient, you need to have a lot of love for yourself and a lot of compassion for yourself, and it’s so much easier to do that when you have somebody who loves you. So much of why I’ve been able to do what I’ve done is because of my husband. When I first got sick,I thought that my life was over. I truly questioned my worth and the point of continuing to live.
I’d had to give up everything I valued about my life, and God, I can’t think of how many times I would be lying in bed and friends would visit and I wouldn’t be able to get up or even have them come into my room because I was so sick.
But as you see in the film, my husband told me over and over again, “I’m not going anywhere. I love you. We’re going to get through this.” People who have that in their lives are at a great advantage, whether it’s a spouse, or a parent, or a sibling.
I thought a lot about what happens if you don’t have that support. How can you find it? The only answer I have is to find other patients and people who understand what you’re going through. Not feeling alone is an important part of it.
It’s also important to feel like you’re fighting alongside people who share your experience. I’ve met so many patients who inspire me and push me to keep going. That’s made all the difference, as well.
When I was completely bedridden, I reached out to Jessica Taylor, a girl in the U.K. She has a Facebook page called “The World of One Room.” I remember telling her about Unrest and finding out that she had spent her first four years of M.E. in the hospital [starting at age 15].
When she was 18, she started a charity to help cheer up and support children and teens who were facing chronic or life-threatening illnesses. She was still bedridden, had almost nothing, but was organizing to help people who were in an even worse situation than she was.
One of the things I realized is that it doesn’t matter how little we have. The most profound thing we can do is to give to others, and that’s an important part of feeling human; not just to be dependent or taken care of, but to give.
That’s an important part of resilience, to understand that no matter who you are or how little you have, there is something you have that someone else doesn’t that you can share. Realizing that was a very important part of my journey.
People often focus on how hard this disease is, and it is really, really hard. Whitney Dafoe [who appears in Unrest] is so ill that he can’t speak or move. Yet when we went to film him, he pushed himself to let us stay in his room long enough to get what we needed. Even in that little space of what he had, he chose to do a tremendous service.
That’s what inspires me, realizing that we have so much to give to each other even if we lost the lives we used to have.
Teme: What are your favorite stories from the Unrest experience so far?
Jen: There are so many. Getting to meet the people I’d only known by phone or Skype is such a beautiful thing. I traveled to the screening in Denmark and met Karina Hansen’s mother. [Note: M.E. patient Karina Hansen was forcibly taken from her family by Danish authorities who misunderstood the illness.]
It was very moving to travel to the U.K. to finally meet Jessica, and to Australia to meet Anna Kerr who helped organize the Unrest campaign there.
When I was bedridden and making this film, I reached out to all these people. I think it saved my life. I never thought I’d be able to meet them because most of them are too sick to travel and I never thought I would be able to travel. Meeting everybody has been one of the most meaningful parts of this experience.
TIPS ON MOBILITY AND TRAVEL
Teme: When you travel, are you able to take precautions to keep from crashing?
Jen: If I use the wheelchair and I’m careful not to go beyond my limits, I do pretty well. I am still very, very sound-sensitive, so I travel with ear plugs. When I’m on an airplane or sitting in a chair, I make sure that my feet are always up [to help manage cardiac and blood circulation issues] and I drink lots of electrolytes.
Most important is understanding my limits and being careful not to over-schedule, and to rest in bed whenever I can take a break. If I have three appointments in a day, I’ll go out and come back and lie down between appointments. I’m really careful about conserving my energy.
Teme: People with M.E. often hear such negative messages about the illness. How do you keep from internalizing harsh judgments?
Jen: I know that we’re fighting for something that is valuable and worthwhile and will save lives. The negative messages don’t affect me because they’re not true. When I first got sick, I would be hurt by the stigma and by people misunderstanding, but at this point, it doesn’t really bother me.
The thing that is still hard is every time I have to see a new doctor. Being treated the way I was [by doctors] when I first got sick was so traumatic that I still have the fear, “Is this person who is supposed to help me and heal me, going to undermine and dismiss me?” I think back to that and I hold my breath.
Teme: I understand that completely.
Jen: I’d like to never get angry and never be scared when I go to a doctor’s office. That’s the part I’m still working on.
Teme: How do you keep an illness like this from consuming your identity?
Jen: I think I can say this illness is my identity, but it’s become my identity in a really positive way. If someone asks me, “How do you create a life outside of M.E.?” the answer is I don’t have one. My body never lets me forget that I have this disease. This is my body every minute of the day. I think I’ve just embraced it. For me, the positive is in the art and in the fight and in the organizing and in the community and in the friendship and in the meaning and the purpose.
Teme: How do you respond to unsolicited advice? Illness tends to attract a lot of that!
Jen: Oh, I simply ignore it. Everyone thinks they’re saying something novel, because I’m novel to them, but at this point there’s nothing I haven’t heard. I used to respond, “Thank you, I’ve tried that,” but now I just ignore it because I don’t have the time. There’s so much else to do.
PUTTING THE “M.E.” IN MEaningful
Teme: How would you say the M.E. experience has changed your life?
Jen: I don’t think I would have ever made a film if I hadn’t gotten sick. I was always interested in filmmaking, but I don’t think I would have had the courage to leave what I was doing. I’m grateful for the opportunity to find my voice and my medium.
I felt like an artist my whole life, but I didn’t have a medium. A medium is a way of expressing what you have inside that is otherwise inexpressible. I love film because you can convey things that are beyond words, and get directly to the heart of the emotion. It’s a powerful way of telling the story and revealing truths that people otherwise wouldn’t see. I’m grateful to have a new calling that I find profoundly inspiring and to combine art and activism. No matter what I do in the future, I think those two things will always be intertwined.
Everyone has to find their own answer, but I know a lot of people who found really meaningful things to do after illness. I find that very inspiring.
HOW TO BE PART OF THE UNREST MOVEMENT!
Teme: What can the M.E. community and our allies do to support the Unrest movement during the nationwide release and afterwards?
Jen: First, spread the word about the theatrical releases and get other people to talk about it and show up. Second, host community screenings. Help us get as many people as possible to see this film. Engage people in calls to action around advocacy. Our advocacy is focused on medical education and equality for research funding.
Most important is to make sure it’s seen by as many people as possible and by the people who most need to see it, especially doctors, nurses, scientists, policymakers and journalists.
Unrest is at Facets Cinematheque, 1517 W. Fullerton in Chicago, Friday, September 29-Thursday, October 5. Tickets and all show times here.
For more screenings around the U.S. and across the globe, go to http://see.unrest.film/showtimes/
If no screenings are scheduled in your area, Jen and the Unrest team encourage you to arrange a community screening. For more information, go to http://www.unrest.film/time-for-unrest/
A virtual screening is scheduled for patients and caregivers unable to make it to the theater. Click on “Community, theatrical, and festivals” here.
Unrest will be available on iTunes on October 10.
Jen is also a TED fellow. Her TED talk has over one million views. You can see it here.
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