It takes a braver-than-usual moviemaker to chronicle how an incurable disease has ravaged generations of his family—much less put his own suicide attempt on camera in his documentary.
In his Slamdance-premiering feature, Huntington’s Dance, director Chris Furbee captures an 18-year span of his family’s fight against the neurological condition Huntington’s disease. Passed down from Furbee’s grandfather to his mother and, ultimately, to himself, the disorder drives the filmmaker at one point to contemplate suicide—a painful, personal moment that made it into the remarkably honest film. Here, Furbee’s father, Gene (who served as an executive producer on the film), discusses his and his son’s choice to go public with one of the most difficult hours of their lives.
“I’ve never handled something like this,” said Herbert Bennett, writer, producer and editor of Huntington’s Dance. “Not sure whether to go deep or tread light.” That’s how we began work on the scene in the documentary in which Chris, my son, contemplates ending his life.
I remember the first time Chris told me that he wanted to end his life, rather than live with Huntington’s disease. We were driving along a narrow, winding West Virginia road, following a dense summer rain, on the way to visit his mother’s family in Philippi. He simply told me he had gone off by himself in the bush one night with the intention of shooting himself and had chosen to set his camera rolling to record the moment. I was flooded with objections of every sort and was silent for a long time before responding.
This moment stayed with me for months and months. I did not feel like my response at the time was adequate, and I had not been able to steer our subsequent conversations toward a deeper exploration of Chris’ thoughts and feelings. We were living hundreds of miles apart, he in the San Francisco Bay Area and I in Victoria, British Columbia. I found myself reluctant to bring up talking about suicide over the phone for fear of bringing him down and making him more depressed (I knew he was struggling with depression). Instead, I wanted to talk to him in person, so I planned a visit to the Bay Area to help with his annual benefit, Furb On The Green, a fundraiser for his film that brings increased awareness of Huntington’s disease to the public.
As I thought about this visit, I realized my own reticence about the subject of suicide needed to be confronted. I just could not keep talking around it any longer. Finally it occurred to me that I could do what Chris had done for years: turn on the camera and start talking. Documenting his life on camera was how Chris had been able to speak about what was unspeakable—it allowed him a safe way to manage his emotions about returning to West Virginia to care for his mother.
I told him that during my visit, I wanted to set up the camera and speak about how his suicidal inclinations affected me. I also told him I hoped this would open an ongoing conversation between the two of us. He agreed readily and thought he could also participate by asking me questions and making comments. Perfect! What a relief to find a way to explore such a delicate matter.
The conversation took place over the course of a couple of days and resulted in several hours of footage which, to my mind, was never going to be used for Chris’ film (though as it turned out, some material from our conversation made it into the edit). My intention in recording the conversation was simply to help us both and, hopefully, let Chris come to a place of peace within himself. I remember us talking about assisted dying and how that was being developed in Oregon at the time for people with incurable terminal illnesses. We talked about how assisted dying would honor his life and those who loved him, so much more than him going off and ending his life would.
In the summer of 2013, our team sat down to view over a hundred hours of footage Chris shot over the 18 years he had spent making Huntington’s Dance. It was then that I discovered that the suicidal incident Chris had told me about while driving through West Virginia was not an isolated event, but a scenario he had played out on and off camera several times. The term “rehearsing” may convey a better idea of the practice: Those contemplating ending their lives frequently go through a “rehearsal” of their deaths, and they often do end their lives during one of these rehearsals.
One day I called Chris and called him and he didn’t answer. That day felt different to me for some reason. I became concerned and called one of his best friends, Greg, who volunteered to drive from Marin to the East Bay to check on him. Greg knocked on Chris’s door until he let him in. Chris had, indeed, decided to end his life that day. Greg stayed with him for several hours until Chris agreed not to harm himself. I flew down shortly thereafter and for the first time, Chris conceded to get rid of his guns and to reconnect with his mental health care system.
Including this scene, in which Chris contemplates ending his life, in Huntington’s Dance was Chris’ decision. His own experience, and the knowledge that suicidal thinking is a large part of the struggle with Huntington’s Disease, was too real not to include in the story. The rate of suicide is four to five times higher in people with Huntington’s than in the general population.
Those of us working with Chris on Huntington’s Dance were concerned that the film was already making serious demands on the audience, even without this scene. How would we work it in? What should we leave out of the graphic footage we had? Should we leave in the soundtrack (noise from the TV playing in the background during this scene), or should we put in music (a piece that Chris’ uncle Mike wrote)?
We had serious talks about conveying the role that alcohol plays in suicide. This had been an element of Chris’ behavior each time he got depressed and thought of killing himself. The majority of Huntington’s Dance shows what a loving, sensitive and responsible person Chris is, yet here in this scene, intoxicated, the anger spills out of him. It was more than I felt most audiences would be able to handle. I don’t think I am perfectly satisfied, still, with the final version of the scene, but I think it is the best version of it possible.
Herbert suggested introducing the scene with a segment of the filmed conversation between Chris and me about suicide, so as to not suddenly drop the viewer into that scene unprepared. That helped tremendously to soften what followed. Then, following the scene, Chris discusses the effects of going through a very close encounter with death. This understanding from him allows the audience to understand how confronting a wish to die can be transformative, how it can shape a viable future despite what one knows to be inevitable.
In Huntington’s Dance Chris provides an intimate glimpse into his inner life. I believe that his film continues to be a way for him to understand his life and provide a means to creatively explore what in many ways is otherwise inexpressible. MM
Huntington’s Dance screened at the ArcLight Hollywood on June 14, 2015, as part of ArcLight Presents Slamdance Cinema Club. Visit the film’s website for more information.