Documenting the Lyme Epidemic


Documentaries rarely get confused with horror films, but Andy Abrahams Wilson’s Under Our Skin has the singular ability to inspire nightmares. This elegantly crafted film is a far-ranging portrait of the underreported epidemic of Lyme disease, and the health care community’s underestimation of the disease’s effects and treatments. Blending the painful experiences of several powerfully articulate patients, from a former forest ranger to a U2 tour events manager, with a bevy of doctors that run the spectrum from risk-taking pioneers to establishment hacks, the documentary expertly balances emotion and reason. (Wilson singles out local editor Eva Ilona Brzeski for special praise.) Under Our Skin, which marks the Bay Area filmmaker’s first feature-length film after a number of shorter works, has its local premiere this Saturday and Sunday, October 11 and 12, in a pair of screenings at the Mill Valley Film Festival. We spoke with Wilson on the phone a few days ago.

SF360: Do you have a personal connection with Lyme disease?

Andy Abrahams Wilson: Yes, I do, my twin sister had Lyme disease years ago. She was in upstate New York and at the time I didn’t take it very seriously. I think my attitude was like most people. I just thought it’s something that makes people tired and lazy, basically. That’s all I thought of it until a few years ago, when a friend of mine here got very sick with all sorts of mysterious illnesses, cognitive symptoms, neurological symptoms, and she was diagnosed with MS and then ALS, which is basically a death sentence, and then, finally, Lyme disease. I was shocked that Lyme disease could do that, and it made me look back upon how I treated my sister, and the assumptions I made. And I looked deeper into the issue and uncovered untold numbers of people who are falling through the cracks of our medical system. I saw an important story there, and that’s basically how it started.

Also, at the time there were a lot of rumors about the origin of Lyme disease as a manufactured bio-terror weapon engineered or re-engineered within a United States animal research laboratory off the coast of Long Island, right across the sound from Lyme, Connecticut. There’s a book written about it and there’s a lot of circumstantial evidence. It’s also, interestingly, where West Nile Virus originally broke out. I’m a sucker for good conspiracy theory and was interested in that angle, too. We never found the smoking gun, so that’s not even in the film, but that was part of it. In the end, what we found was enough drama and controversy without it.

SF360: And yet the film doesn’t have a sensationalist tone. You’re pretty measured and methodical.

Wilson: We were on the Dr. Oz show a few weeks ago in New York, and he said something like, ‘It’s not your typical medical documentary.’ I think that’s sort of our guiding philosophy. I’m not interested in making purely informational films or hard-hitting, investigative approaches which tend to polarize. I’m interested in works that can get under your skin, and I think the best way to do it is through storytelling and character arc.

SF360: Under Our Skin has an emotional component, obviously, because your subjects are people who have suffered and continue to suffer, but you didn’t tip into bathos. What’s the key to avoiding sentimentality and that kind of audience manipulation?

Wilson: A lot of documentaries would take the approach of profiling three or four characters to represent an issue. I think what was important here is that this is not isolated to three or four people. It’s a gigantic epidemic. How do you get at that? How do you represent the vastness of the issue? One way was a chorus of voices. So that what we see is not just three stories. It’s hundreds of stories. It’s thousands of stories. It’s hundreds of thousands of stories. So that was one way to approach that. But it wasn’t enough just to tell singular stories because the underlying issue is also a powerful story that needs to be told. So it was balancing the personal stories, which do tug at your heartstrings, with the medical and scientific story, and also the political story. Yeah, I think it was a challenge to do that, and I hope we succeeded, but it was always important—I don’t think it would have been enough to do any one of those things to do justice to the issue.

SF360: Did that feed into your decision to make a feature-length film, instead of a TV length?

Wilson: I believe the subject of this film needs to dictate the length, and most of my films tend to be on the shorter side. I certainly think most documentaries are too long. But this issue is so big and vast that, to do justice to it, it needs to be long. And it could have been longer. We probably had about 375 hours of footage, and there’s so much that we didn’t cover.

SF360: Do you envision the film having an influence from the bottom up or from the top down?

Wilson: It’s a good question. From the bottom up. Absolutely. I think that change around this issue is only going to happen from the bottom up. This has been going on for 30 years and the top is entrenched in protecting its interests. The change is not going to happen until the awareness happens and demand is there from the bottom. And I think that’s what we’re seeing right now. We’re having tremendous outreach life with this film right now. It’s being shown in communities across the country, hundreds of communities, a lot of DVDs being sold and getting a lot of press, and the issue has never gotten this kind of press in the past. It’s not just about controversy, this side versus the other side. This film is presenting a reality, a window into a reality that we haven’t seen. The film was even part of a briefing on Capitol Hill last week. Right during the financial meltdown, there was still a standing-room only crowd in the briefing room. But even there, I felt like the response from the top, from governmental entities, from medical societies, is not going to happen until they know that their constituents and patients are demanding answers and demanding change.

I’ve always felt that way. People talk about more research funds need to go into this issue. That’s a goal of a lot of the Lyme advocacy organizations. But what happens is, if the funds are allotted they go into the hands of people who have been the gatekeepers for this whole time. It’s not even enough to say we need more money going into research. We need a whole sort of shakedown of the establishment.

SF360: Some films, usually historical docs, are intended to stand as a definitive work and others are meant to have an impact in the moment. Under Our Skin would seem to fall into the latter category, with time of the essence in terms of finishing it and getting it out. Did you feel a sense of urgency?

Wilson: I never thought about that. I guess I thought about the urgency, but I never thought, ‘Will the film stand the test of time?’ I think it will be a seminal work around this issue and I hope that it contributes to the ongoing debate about our health care system and our medical research system and our insurance system. So I see it as contributing to those ongoing debates that certainly are not particular to time or one issue, like Lyme disease.

SF360: It’s an occupational hazard of documentary filmmakers that they’re embraced as experts on a subject because they made a film about it.

Wilson: I’m an accidental expert on Lyme disease, and that’s the last thing I thought I’d ever be. I even know more than some doctors. I’ve even become an accidental activist for the cause. That’s part of the job. I’m not just making movies, I’m making a movement.