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Are there other aspects of filmmaking that you would still like to explore?
I have begun exploring some of these themes of the healing nature of film and photography as a workshop leader. I’ll be leading a five-day workshop at Esalen in October called “Framing Nature: Exploring Self and Environment through Photography.”
Please discuss how the idea for “Under Our Skin” came about.
A friend of mine in San Francisco was getting sicker and sicker with mysterious, cognitive and neurological symptoms. She was diagnosed with MS, and then ALS, which we know is basically a death sentence. But she kept looking for possible explanations and, finally, was diagnosed with Lyme disease. Lyme disease!? I recalled that my twin sister in Upstate New York suffered from it years ago. I remember she was always tired and achy, though she looked just fine. So I never took it too seriously, like most people, and I believed it was just an East Coast illness—if not all in her head. So I was shocked that Lyme disease could be so debilitating, even life-threatening. I learned it was a virulent cousin of syphilis which, left untreated, caused neuro-degenerative impairment and dementia.
As I looked closer at the issue, I discovered that the prevalence of Lyme disease in the U.S. is far greater than HIV, West Nile virus (and now swine flu) combined. Like the “great imitator” syphilis, it mimics other illnesses, including chronic fatigue, fibromyalgia, rheumatoid arthritis, lupus, MS, ALS, Alzheimer’s and autism. I learned it could be transmitted from mother to child in utero and that sexual transmission is a good possibility. Worse still: standard tests seem hopelessly inaccurate and most physicians are untrained to detect or treat the illness. Furthermore, physicians who do treat chronic Lyme risk the suspension of their medical licenses! And on the patient side, I found variations of the same story repeated thousand-fold: doctor after doctor, years of misdiagnoses, hundreds of thousands of dollars spent, denial of insurance coverage, accusations of hypochondria and, finally if ever, a road back to health.
What was going on? What if my friend had stuck with the ALS diagnosis? Would she be dead today? What if my sister never received a Lyme diagnosis and subsequent treatment? Sometimes I say the film is my way of making penance for the way I treated my sister when she was sick. After all, William Osler, considered to be the father of modern medicine, once said, “If you listen carefully to the patient they will tell you the diagnosis.” Our patriarchal and good ol’ boy medical system is coming up against its limits of knowledge and arrogance, threatened in good measure by “internet activists” (mostly women) who are taking their family’s healthcare into their own hands, sharing community and resources, and demanding help. After five years of research and production, what we uncovered is a chilling tale of microbes, medicine and money. Commercialization of scientific research and conflicts of interest in medicine are poisoning healthcare and keeping people chronically ill, if not killing them. We need an overhaul of our medical research, healthcare and insurance systems. Lyme disease is the canary in the coal mine and a case study for what’s wrong and needs to be cured.
Please elaborate a bit on your approach to making the film.
What was abundantly clear for me was that we couldn’t make a typical hour-long documentary that profiled just three or four subjects, hoping to illuminate the universal through a few personal, representative stories. At the same time, it was necessary to get close to the film’s subjects, to identify with them, to care about them. But the depth and breadth of the issue and illness demanded that we represent a vastness of experience. This became our goal, while at the same time keeping the film “character based” through following the arcs of some principal subjects. Early on, we had filmed hundreds of people at a Lyme patients conference, one after another, hoping to find good characters for the film. What we ended up with was over 60 hours of what we called “white sheets” (because they were initially filmed against a white hotel tablecloth!). These eventually were edited into “chorus of voices” segments which turn up throughout the film, establishing themes and driving home the fact that the film’s main characters are just a few among so many. It’s very rare in documentary filmmaking that we have the opportunity (or burden) to interview literally hundreds of people virtually with the same untold story, but that’s we had here. It was a treasure that I held dearly and that I wanted to represent.
This relationship between the big picture and little picture was a guiding theme in the film. I’m fascinated by the interplay between macrocosm and microcosm, seen and unseen, and other clashing versions of reality. The tiny microbe at the center of this larger than life issue provided a powerful symbol and point of entry for an issue that is hidden and lurking. Something so small yet so big. A disease so evident but often can’t be seen. What’s gotten under our skin is not just a microbe, but medicine itself, and a poisonous system which is keeping us sick. Our own human skin is a microcosm of the skin of the earth, and the extent to which the earth’s body is out of balance, so is our own. For these reasons, images of nature, especially close-ups, become visual allegories in the film. Nature as context and content.
I want to show the horror of an illness and an ill system that too long has been ignored. But I also want to show the human and natural beauty right next to it. Sometimes indistinguishable, the beauty and horror are connected. If “Under Our Skin” merely perpetuates the idea that the natural world is perilous, or that human nature is corrupt, we miss out on the glory that surrounds us—and I would not have done my job. On the other hand, if we are lulled by convention or don’t look below the surface, we risk infection by the equally dangerous maladies of ignorance and apathy.
How did the financing and/or casting/crew for the film come together?
There was an alchemy and synchronicity of elements in the making of “Under Our Skin.” Guided from the beginning by curiosity and compassion, it took me down a path of no return, and showed me time after time the importance and responsibility of the undertaking. I truly believe that the extent to which I was in service to the project or, as the Buddhists say, got out of my own way, the filmmaking process flowed. Most of the characters came to the film somewhat effortlessly. I kept my eyes open for important life-changing moments that could be filmed. The very first shoot was Mandy getting married, just after her Lyme diagnosis and the start of her Lyme treatment. I had no money or help at the time, but I knew this was an essential moment in her character arc, and did the shoot as a one-man crew. Elise, who had previous miscarriages caused by Lyme, was pregnant and about to give birth again. That was my second shoot. She was so impassioned about the importance of educating others that she allowed me to film her birth, despite the fears and uncertainties around it. My senior producer, Kris Newby, who was becoming one of the foremost Lyme-issue researchers, happened to live nearby and joined us early on out of her own deep commitment. Eva Brzeski, our editor, happened to have just moved to my hometown, and ended up being the perfect editor. Justin Melland, our composer, also joined the project effortlessly, and so did his music.
Just as the characters and crew came to the film in a natural and seemingly fated way, so did the finances. Tapping into an enormous community of people who for so long have been silenced and stigmatized, the film quickly generated support from people who so desperately wanted this story to be told. We also received grants from private foundations, but the bulk of financing came from individuals and family foundations. We had over 650 donors to the project! Every step of the way, the film has been a perfect example of grass-roots involvement and activism, from research to outreach and distribution. I believe the alignment of service, skill and spirit are what made this film come together. I believe this is true of all good works in general.
What general advice would you impart to emerging filmmakers?
Work to understand the motivations of your interest in the themes of your films. The filmmaking process is at best a continual negotiation between what is seen and not seen—on every level: formally, emotionally, psychologically. If we don’t connect with the motivations for our films, then we risk exploiting our subjects, using them unconsciously as projections, and thereby limiting their authenticity and your own opportunity for growth. Sometimes the “aha” moment comes after the film has been made, and we understand that the making of the film itself was the struggling to understand these questions. But this process is essential, to make good films and good people.
Please share an achievement from your career so far that you are most proud of.
Without a doubt I am most proud of “Under Our Skin.” I say this with humility though, because I really feel the film has been about service. I hear from viewers day in and day out that the film has changed or saved their lives. They use those words: “The film saved my life.” Talk about healing, it can’t get better than that!
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