About this project
In November 2013, a community of patients and #MEallies came together to show the true face of ME and made history. Thank you for dreaming big!
You can continue to support this project and learn more about Myalgic Encephalomyelitis by visiting our website, canaryinacoalminefilm.com.
Help us get to 6509. Become a $1 backer and recruit ten of your friends and family to also donate a dollar. You'll get awesome rewards like a "Behind the Scenes Pass" and a chance to shape the film or tell your story. To learn how it works, sign up here: j.mp/canary6509
Why 6509 backers? Because we want to win with overwhelming force. That number would put us one man or one woman ahead of the standing record. Whether we're pitching to journalists or courting distributors, we want incontrovertible proof that yes, we exist, we are numerous, and so are the people who love us. There is a passionate audience that wants to see this story told.
Jennifer, a Harvard PhD student, was signing a check at a restaurant when she found she could not write her own name. Months before her wedding, she became progressively more ill, losing the ability even to sit in a wheelchair. Doctors insisted that her condition was psychosomatic rather than real.
As she dug deeper, she found she had become a part of a hidden world of millions suffering from an illness for which there is evidence dating back to at least the 1930s. The disease, myalgic encephalomyelitis, was re-branded in the 1980s by the CDC as 'Chronic Fatigue Syndrome,' a name which became both a punchline and a Rorschach: a wastebasket of undiagnosed conditions hiding a very real disease. Scientists at the country's top institutions have found evidence of profound metabolic, neurological, and immunological dysfunction in patients with M.E.. However, since the disease is not taught in medical schools, doctors don't know how to recognize it, effectively denying healthcare to a million Americans.
In Canary in a Coal Mine, Jennifer documents her own story and the stories of Jessica, a young British woman who runs a children's charity from the room that has been her whole world for the last eight years, Howard, an 80s rock publicist-polymath, Mary, an activist, Liisa, a Canadian ex-buddhist monk, and Leeray and Casie, a mother and daughter bedridden in Georgia. Through extreme diets, experimental medication, political activism, or by moving closer, or farther, from God, each struggles to find their own way to fight, accept, and sometimes, even thrive in spite of 'an illness that has no end.'
On October 25th, just 3 days and 5 hours after our campaign launched, we reached our first funding goal of $50,000.
Words cannot equal our gratitude for your generosity. This campaign has invigorated a community that has for so long felt its voices marginalized and ignored. The power and the energy behind this campaign is extraordinary. This is our moment. We are going to do everything we can to tell this message from bigger and bigger platforms, and to make a film that is worthy of all the trust you have put in us and the love you have showed. You have inspired us to push harder, to dream bigger.
Now, we want to become the most popularly supported documentary film in the history of Kickstarter. 6509 backers will get us there. It only takes $1 to write a new story and change the future.
Let's join our voices and shout it loud! Share your chronic illness story at our storytelling website.
This is also a story that reveals deep flaws in our modern approach to medicine and the delivery of healthcare, the tensions between science and medicine. Medicine has always been troubled diseases patients could feel or demonstrate, but it could not "objectively" measure. This is especially true when it came to female patients. Medicine locked epileptics in insane asylums before the invention of the EEG. It debated as to the true nature of Multiple Sclerosis before the MRI came along in the 1970s. In some countries, patients with severe ME are still forcibly institutionalized. What has happened to this disease has happened before and is likely to happen again.
Whether or not you have 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?
The challenges of filming patients with severe M.E.
To touch a wide audience, we believe we need to connect to universal themes and show the world what it really looks and feels like to live with this illness--the sorrows, yes, but also the joys and moments of grace.
We will tell the story of M.E.: the history, the science, the politics, but through the stories of our main characters: patients who will bring us into their day-to-day lives and help us to experience, through them, what it is to live with a severe chronic illness. We ask them to turn their smart phones and digital cameras on their own stories. This is important because we often don’t look as ill as we feel every single moment of the day, and our symptoms wax and wane in severity, as do our feelings about the future.
The film makes use of a combination of studio-shot interviews, artfully-composed b-roll, archival footage, and self-filmed diaries.
Canary in a Coal Mine is, at its heart, a question: what does this illness signify about the world we live in and what do we all risk by ignoring the voices of the sick and the profoundly invisible? What could we all learn by paying attention to those voices?
WHO IS BEHIND THIS FILM?
Jennifer Brea, Producer/Director
Jennifer is a doctoral student in the Department of Government at Harvard University on indefinite medical leave. Prior to that, she was a print journalist in Beijing and East Africa. She is a TED Fellow, and earned her AB in Politics from Princeton University.
Kiran Chitanvis, Creative Producer/ DP
Kiran is an independent filmmaker. She has worked on numerous short and feature films that have played at festivals around the world. A member of the inaugural class at the Tisch Asia Singapore campus, she holds an MFA in Film and Television Production from NYU Tisch School of the Arts. She earned an AB in Politics from Princeton University.
Thank you so much to Mary Schweitzer, Howard Bloom, Liisa Priyanka Lugus, Jessica Taylor, Courtney Craig, Derek Enlander, Mady Hornig, and Nancy Klimas for sharing your time, your expertise, and your stories.
In addition, we are supported by: Toni Bernard, Howard Bloom, Eva Hagberg, Sarah Allegra, and Elisabeth Tova Bailey.
Directing With A Disability
The money we raise on Kickstarter will allow us to go into production next year and will fund the time, equipment rental, and travel expenses of our Director of Photography, an assistant camera person, and a sound mixer as they shoot on location in Canada, the UK, around the US and possible on or two additional international sites.
$50,000 will get us to the end of production. If that were all we raised, we could make a film we are quite proud of for release online. However, to make a film that we believe will change the face of this illness forever, that is just the beginning. Our ultimate goal is to raise at least $200,000 through a combination of online fundraising, grants, and the support of a small cadre of executive producers.
For more on budgets for documentary films, see our update: "Our big push to the finish line."
The Role of Adaptive Technologies
First, give and give generously, whatever that means for you. Every dollar counts.
Second, spread the word! Crowdfunding campaigns reach and exceed their goals when very large amounts of people donate small amounts of money. So click on this link and share our page on Twitter and Facebook. Email your friends and family.
If you are interested in making a tax-deductible donation or investing in the project in a deeper way, email firstname.lastname@example.org. We'd love to have a conversation.
We're offering a range of awards to say thank you for helping the world to #seeME!
We are excited to offer some special rewards from Toni Bernhard, Howard Bloom, Eva Hagberg, and Elisabeth Tova Bailey. Also on offer, a forthcoming e-book by director Jennifer Brea on becoming ill with M.E. and a PDF booklet, filled with archival goodies from research for our film.
Elisabeth Tova Bailey is the author of the award-winning literary nonfiction book The Sound of a Wild Snail Eating. Her book won the William Saroyan International Prize for Nonfiction, the John Burroughs Medal Award, a National Outdoor Book Award. Bailey became ill with CFS/M.E. after returning from a trip out-of-the-country. Bailey explores illness through the lens of natural history as she spends a year observing the life of a wild forest snail that lives at her bedside. Bailey is offering a limited number of autographed copies of her book toward the Kickstarter fundraising campaign.
Toni Bernhard is the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers and the newly-released How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. She was a law professor for 22 years at the University of California-Davis until she became ill with CFS/M.E. in 2001 and was forced to retire. Since then, Bernhard has become a published author and also writes for Psychology Today online. Bernhard is offering five autographed copies of How to Be Sick, a book which explores living skillfully with the challenges of chronic pain or illness or any condition. In addition, she is offering three copies of the audiobook of How to Wake Up, a book that integrates many of the Buddha’s teachings into everyday and focuses on practical ways to find peace and well-being regardless of your particular circumstances.
Howard Bloom has been called "next in a lineage of seminal thinkers that includes Newton, Darwin, Einstein, [and] Freud," by Britain's Channel4 TV and "the next Stephen Hawking" by Gear Magazine. Bloom is the founder of three international scientific groups and the author of The Lucifer Principle, Global Brain, The Genius of the Beast, and The God Problem. As a "field expedition into the forces of history," Bloom founded the biggest PR firm in the music industry and worked with clients like Michael Jackson, Prince, Bob Marley, Cyndi Lauper, AC/DC, Bette Midler, Billy Joel, Peter Gabriel, David Byrne, Simon & Garfunkel, Farm Aid, and Amnesty International. Bloom was confined to bed by M.E. for fifteen years. He is offering a limited number of autographed copies of The God Problem: How a Godless Cosmos Creates, a book that explores the next big challenge for science and human thought. And a book that will utterly reshape the way you see.
Eva Hagberg is the author of the Kindle Single It’s All In Your Head and the books Dark Nostalgia and Nature Framed. She is a PhD student in Visual and Narrative Culture, a department she invented, at the University of California, Berkeley, and a writer whose work has been published in Wallpaper*, CITY, Metropolis, Architectural Record, and the New York Times T: Style Magazine. Her books and articles explore architecture and design. Hagberg became ill in 2008 and has spent the last year undergoing brain biopsies, CT scans, MRI's, and hundreds of arcane blood tests - all in service of trying to diagnose what so far still remains a mystery. It has been a whirlwind journey documented in It's All in Your Head, a memoir that delves into the nightmare of medical care for women, the terror of early-onset brain disease, and the power of love. She is offering a limited number of her Kindle Single.
A Walk Through ME's History: A PDF Booklet
As I began doing background research for the film, I became more and more curious about ME's pre-1984 and pre-"Chronic Fatigue Syndrome" history. In the early days, it was thought to be a new form of polio causing transient, rather than permanent, paralysis.
As is often the case, the present is an echo of history. Even before the invention of "Chronic Fatigue Syndrome," the disease disproportionately struck women. That's never a very good thing for a disease. It was not long before, at least in media coverage, "atypical polio" became "atypical polio, but you know, with a little hysteria."
We still don't know what all that research will uncover, but are excited to share what we find with you as PDF booklet. See the "A PIECE OF HISTORY" reward.
Fine Art Photography
We are offering 10"x15" and 16"x24" limited edition prints of photos by Mr. Lisa and by Sarah Allegra, an artist living with ME, as well as a postcard of her photograph, "Spoon Theory."
Sarah Allegra is an internationally-published fine art photographer; a photojournalist of the fantastical, specializing in conceptual portraiture. Her photos offer the viewer a portal to another world; an ethereal, dream-filled realm where the impossible becomes possible. She sees the world in a mythic, symbolic way. Things are rarely what, or all, they appear to be. There are hidden meanings in every shadow. Each photo is a complete story unto itself; a piece of visual poetry. She has had ME for approximately a dozen years and has been shooting for just under four years.
Mister Lisa is 22 years old and has had M.E. for about a year and a half. She is from Sweden and she writes, "I use photography as a way to express myself. It makes me feel alive. It gives me a voice."
We are also offering a unique, timestamped, autographed still from the film, signed by the filmmakers, and selected from some of our most arresting shots.
Shoot your story
Donate $1200 (Los Angeles, New York, Melboune) or $2000 (London) to our Kickstarter campaign, and you'll get to sit (or lay) down with us for about an hour in a studio and talk about any aspect of your personal story, activism or views of the disease you like. We'll produce a short video for web using clips from your interview, and may use some of your footage in the final film.
Yes, it's a big sum, but it reflects the costs involved in studio time and editing, and includes almost all of the other rewards. Most important, it's a chance to help us make history.
You need not be a patient to be filmed. We'd also love to document caretakers and family members who might help tell the story of a loved one who cannot make it to a studio. They have a story to tell, too: of what it's like to love, witness, and support someone with this disease.
Risks and challenges
The biggest risk is naturally health: the health of the director and the health of our interview subjects. When the director is chronically ill and all the patients are chronically ill, everything just has to go a little more slowly. However, we already have some experience working within these constraints, having produced footage for our Kickstarter campaign, and have tried to build that into our project completion date: December 2015. We may shoot for only six weeks, but it will be six weeks over many, many months.Learn about accountability on Kickstarter