A new documentary is sure to spread awareness for a rare disease called Miller’s Syndrome thanks to two friends, Nathan Meier & Logan Madsen. The boys joined forces, one as a film maker, and the other as the subject to help illustrate what daily life is like for someone with a complex rare disease.
Though they’ve been filming for three years, they only recently completed a successful kickstarted to help produce the project into a full film. Global Genes had the opportunity to sit down with filmmaker Nathan Meier to talk about the experience of creating such a unique story on tape.
Global Genes: Can you tell us about the project’s progress in the last three years? What was the impetus for the kickstarter?
Nathan Meier: Even though I’ve been working on this film project over the last three years, there are large gaps between our shoots. Because I live in Southern California and Logan is in Salt Lake City, Utah, there are logistical problems that limit our ability to connect. However, I have family in Utah and a daughter I visit as often as possible. On these trips I always make sure to bring a camera and catch up with Logan. Over the years I’ve managed to collect many hours of footage and because of the time it’s taken, the viewer will see Logan develop both personally and artistically throughout the film. On April 18, Logan had an art show at a gallery in Salt Lake where he exhibited a series of autobiographical paintings he began making six years earlier on the floor of my Los Angeles apartment. I was able to document the creation of much of this body of work on my sporadic visits and was present at the gallery for their unveiling. I want to spend more time shooting with Logan’s sister and parents, but the bulk of the piece has been shot.
GG: Who first proposed the idea of the documentary, you or Logan? What was the other’s reaction?
NM: We decided to start a Kickstarter campaign to raise the money necessary to complete the film. Up to this point it has been completely self-financed, which has limited us significantly. The reason we launched the campaign when we did is because we felt we are getting close to the end of our journey and now it’s time to share Logan’s story. The money we raised will cover our final production costs, but will mostly go towards post-production–editing, sound mixing, music, etc..
GG: What sort of moments did you want to capture in Logan’s story?
NM: The idea to make the film in the first place grew out of conversations between myself and Logan. We had lost touch for several years after high school. I moved away from Utah to attend the California Institute of the Arts (CalArts) in Valencia to study filmmaking. In 2006, while visiting family in Salt Lake, I went to the opening of Logan’s first art show. We hadn’t seen eachother in years, but reconnected there and began to have regular contact over the phone. During one of these conversations, Logan told me that his next paintings would address his experiences of having both Miller Syndrome and autism. He felt however, that painting had representational limitations and was interested in exploring some of his ideas with video. In 2008 I spent an evening shooting video with Logan as he painted and did random tasks around his house–we focused on things that were difficult for him to do because of his shortened arms–the most visibly apparent aspect of Miller’s. I was struck right away by how comfortable and open Logan was on camera. Two years later I cut that footage into a short piece and began to show it to friends and colleagues and got great responses. It quickly became obvious to me that our project needed to be expanded upon as we had barely scratched the surface of Logan’s remarkable story and that is why we are now producing a feature-length piece.
GG: How has your relationship changed with Logan since you started filming? Would you say you have a better grasp on how his disease affects his life?
NM: Because Logan doesn’t leave his house much, except to go grocery shopping or to walk his dog Charlie, most of what I’ve filmed has been private, home moments.There are other moments with his mother Debbie and sister Heather (she also has Miller Syndrome). Weekly he meets with his former psychiatrist and we’ve managed to capture wonderful between the two of them. Much of our film centers around Logan’s art making so that is prominently featured. It’s the quiet moments alone with Logan that I relish the most.
GG: What sort of things did you learn about the challenges in day-to-day life for those with rare diseases compared to others?
NM: In high school, where our friendship began, Logan and I never discussed his condition. Back then he was in denial about his differences, so that was an area I never approached with him. It wasn’t until we began to discuss collaborating on a video piece in 2006 that we ever even discussed Miller Syndrome. Our friendship has grown a great deal since we began this project. I have spent so much time with him, watching how he struggles through daily life; how social situations cause him stress; the way people stare at him in public; the constant pain he endures; the way his autism affects nearly everything he does. I have gained a much greater awareness of what Logan’s reality is, but of course I will never truly be able to understand what it means to be him. He’s made me realize just how much I take for granted as a healthy person.
GG: What do you hope the audience will take away from this film?
NM: Logan has a strong voice and my goal with this film has always been to help him find a platform for it. Both of us want this film to open people’s eyes to a new way of looking at people with severe disabilities. We want to open up a dialogue about these issues through the frank and honest representation of his daily existence. I hope people are inspired by Logan and his story, because I know I am.
GG: What are the next steps for you and Logan?
NM: There is still a bit more to film, but this summer will be our time to get this film finished. We have assembled a great team to help with post-production and are thrilled to be working with Bill Haugse–one of the Academy Award-nominated editors of Hoop Dreams–and with Jesse Paris Smith and Eric Hoegemeyer of Tree Laboratory, who are doing the film’s score.
GG: When and where can we view the full film?
NM: It’s impossible to say just when and where the completed film will be able to be seen. Documentaries are labor intensive, but we are dedicated to finishing it and getting it out to the world as soon as possible. You can follow our progress on our Facebook page.
GG: Do you have any other advice for future filmmakers who are considering using rare disease as their subject?
NM: My advice for filmmakers making projects about people with rare diseases is the same as it would be for a film about anyone: Take time with your subjects. Don’t make assumptions. Listen. Be patient. Do research. And perhaps most importantly, be respectful. You are dealing with someone’s life and there is a lot of responsibility that comes with that arrangement. People matter more than films.