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An Interview With Filmmaker and Journalist Jennifer Brea On Her Myalgic Encephalomyelitis Documentary

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It was only a matter of time before Jennifer Brea did a documentary. An experienced journalist, Brea has covered hard-hitting stories and issues ranging from development and aid in Tanzania, to Chinese business involvement in China. She has written articles for such prestigious publications as The American, and is very much accustomed to going deeper than the surface issues.

With her documentary-in-progress Canary in a Coal Mine, she is dipping into more personal waters. The doc explores Myalgic Encephalomyelitis. The TED fellow discussed her background and work with Kreyolicious.com.

Tell us about more about yourself.

I was born in New York and grew up in Florida. My grandparents on my father’s side emigrated from Haiti in the 1960s. My grandmother was half Chinese. While on the one hand Haiti is a very distant and abstract place for me–I speak French because I learned it in school and only know a few words of Kreyol–the years I spent as a child playing in their house and all the stories they shared had a profound effect. They are the reason I spent my early twenties running around China and Africa.

Your film project Canary in a Coal Mine is about Myalgic Encephalomyelitis.

Three years ago, I came down with the worst flu of my life. Two years ago, I forgot how to write my own name. Then, I became more ill than I ever knew was possible. It is not an exaggeration to say I thought I was dying. My neurologist told me mine were the symptoms of conversion disorder, caused by some stress or repressed trauma I might not even be able to recall. Every pain, every symptom–even the severe sinus infection for which I took antibiotics and recovered–were physical manifestations of some vague, psychic disturbance.

I was eventually diagnosed with Chronic Fatigue Syndrome, or more accurately, Myalgic Encephalomyelitis (ME).

Numerous studies over the last thirty years have documented the many biochemical, immunological, neurological, and epigenetic abnormalities that are characteristic of this disease. Patients have altered microbiomes and pronounced mitochondrial dysfunction. Unfortunately, many of these tests are either not standard or aren’t commercially available. There have also been documented outbreaks involving dozens or even hundreds of people in a single town, school or hospital, suggesting that there is an infectious trigger.

Despite decades of science, many patients, for the first several months and years of illness, meet with doctors who do not believe they are really ill. This is because the disease is outside of their training; it is simply not taught in medical schools. Worse yet, in some corners, it still being taught as a psychological disorder. Patients are told to go about their lives, exercise, or otherwise maintain a level of activity that can lead to permanent disability. In some countries, there have even been cases of forced psychiatric institutionalization.

The film follows the lives of several people living with ME and examines the impact it’s had not only on their lives, but on their relationships, and on the lives of those around them.

We hope this is a story that touches not only our patient community or people living with a chronic illness. Everyone at some point will face a difficult, confusing, or scary health issue; or it will happen to someone they love; or they will confront some other obstacle that will alter the course of their lives and destroy the image they once had of their personal future. When that happens, how will we react? Will it destroy us? Or will we be able to make beautiful things grow from those dark places?

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Have to ask…what inspired the title of the doc?

Canary in a Coal Mine was an instinct rather than the outcome of a long intellectual deliberation. I thought “What the f*** is going on with me? This can’t be right.” And I believed then, as I do know, that if I had spent the first twenty-eight years of my life living up in the mountains or somewhere else pristine, this just would not have happened. I think it’s clear that chronic illnesses are increasing, and it’s not just because we are living longer. I got sick at 28. I believe the way we have changed our environment–what we eat, how we sleep, the toxins and chemicals we are exposed to everyday–wreak havoc on our immune systems.

There is another, deeper meaning of the title. And that’s that this disease’s history reveals deep flaws in our societies’ approach to medicine and the delivery of healthcare that I think everyone needs to know about. You can’t mess up with a disease this badly and not be making similarly grave errors, or have equally dangerous blind spots, elsewhere.

What are some of the challenges you’ve faced as a first-time filmmaker?

It’s funny, I don’t feel as though I’ve faced any challenges specific to being a first-time filmmaker. The biggest challenge is making a film while severely ill. Shooting is intense, and so we can only shoot about one day a month, maybe two. Even as we’ve been editing videos for our Kickstarter campaign or reaching out to potential subjects, there’s always this hard wall I run into where the more I do, the less I can do. This illness is so up and down that it’s hard to know if it’s just that the angle I’m laying at is too high, or if I sat up or walked too much two days ago, and I’ll recover with a day’s rest, or if I really am wearing myself down to a nub. Certainly, in the last six months, I’ve had fewer and fewer good days.

But in answer to your question, while there might be hurdles down the line with respect to funding or distribution that are just easier to surmount when you’ve done this before, where the creative part is concerned, the actual act of making the film, I don’t feel being green has been any disadvantage. It helps to have someone who knows the ropes! I’m working with a great creative producer, Kiran Chitanvis.

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A still from the documentary Canary in a Coal Mine.

Your past career as a print journalist brought you from Beijing to East Africa. How has that experience shaped you?

I learned that many of the stories we hear from these places may have little to do with what matters to the people there, or what they would rank in the top five most important trends in their country or culture. It’s about the market back home. When reporters choose which stories to tell and how to tell them, it has to somehow fit into the existing narrative. For years, half of the stories coming out of China were about human rights. Not to say that the struggle for broader political and social rights is not immensely important, but there was so much more going on at the time that was crucial to understanding how China was transforming itself that just wasn’t getting covered.

It makes me a bit afraid of the prospects for our film. We are trying to bring about a paradigm shift with respect to my disease. It’s easier to get the word out when you are telling a story people already think they know, or if it tweaks what they already know in a pleasantly surprising way. Charging through the gates on a purple unicorn? Not so much…

Did you receive formal training as a filmmaker?

Ha! Not unless you count the triple features my mother took me to as a kid. We’d buy a pair of tickets, then exist the theater four to seven hours later.

A documentary film, like a feature film is a collaboration of sort. What have you learned about creative partnerships through this whole process?

First, it’s good to win the lottery. My collaborator, Kiran Chitanvis, is amazing and we hooked up almost by accident. It’s important to find someone with whom there is a strong sense of a shared vision. The details will sort themselves out. Chemistry helps. So too does working with someone you like and who is generous and decent.

What’s the most inspiring, thought-provoking documentary you’ve ever viewed?

I am a big fan of both Super 8 and Sarah Polley, and loved Stories We Tell. I am, as many, a student of Errol Morris’s films. I suppose it’s really about loving creative nonfiction much more than I love either fiction or the straight-forward reporting of the facts. Truth is stranger than fiction, but it needs a story and a storyteller to really get at the capital tee sort of truth: the true heart of things.

I was also very much inspired by Rebirth, a film that followed survivors and bereaved families for nearly a decade after 9/11. The intimacy and connection between the subjects and the director interviewing them, Jim Whitaker, is amazing. I’ve never seen anything like that before.

Any tips for those wanting to do documentaries of their own?

Before embarking on this project, I reached out to friends and acquaintances in film for advice on “how to get started.” The best advice I received was, “Go forth! Make film!” In other words, the only way to make a documentary for the first time is to make a film for the first time. Thinking about writing a book, or making a movie, or jumping out of a plane does not get you to the doing, and it is only in the doing that you can start to realize what you know, what you can do, and what help you need from others.

Other than that, find a story you feel you have no choice but to tell.

Please show your support for this filmmaker by donating to her Kickstarter campaign! CLICK HERE.

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