Interview With Lucy Walker

  • How did this project come about?

  • Marianna and I had been introduced a couple of years before by a mutual friend. We'd communicated by email, but had never met. She called me up one day and said, "I have an idea to make a film."

  • What was your first impression of the idea?

  • I get a lot of people calling me up and asking, "Can you make a film about this? Can you make a film about me?" Usually what I say, which is really true, is that I'm too busy and I'm so sorry. But when Marianna explained the idea for the film she imagined, I was very moved. Her goal was to raise awareness and get people to talk about Huntington's disease. When I realized how tough life is for people who have Huntington's in their family, I really felt like I wanted to help. It also seemed that having a camera around could give Marianna a sense of purpose -- the idea that her suffering might be help ease somebody else's suffering could be something to cling to.

  • Why did you choose to focus on Marianna before she knows her fate, as opposed to after?

  • We wanted to capture what changes when you learn what comes next. The thing that people forget to document is the beginning, and we had a chance to get the beginning. This is why Marianna and I figured out we would shoot the dinner scene with her friends.

  • There's a scene where two of Marianna's friends read about the disease without her present. Why include that?

  • It is a film about Marianna's friends absorbing the news as well, so that scene shows how other people are trying to get their heads around things. They also Google the disease; I think that's a typical response these days. It helped elucidate what the stakes are.

  • The footage of people suffering from Huntington's disease is so disturbing and powerful. How did you curate that selection?

  • The disease is hard to imagine; it's very specific and hard to describe. That footage shows what the disease is and what's at stake. I think that the tone in Marianna's voice is very telling. But we didn't want to drag it out. I don't believe in agony for the sake of it. I always wanted to make sure that it was never gratuitous.

  • Do you have a favorite verse or line from Bob Dylan's poem?

  • The whole thing is moving. The title of the film comes from the poem:

    "And the lion's mouth opens and yer staring at his teeth
    And his jaws start closin with you underneath"

    That credibly pulls at the feeling of something that?s very scary.

  • What do you hope viewers takeaway from this film?

  • The main thing is that we are trying to get the word out about Huntington's disease. It's a disease you want people to know about. And I hope they enjoy the movie and get to know Marianna. She is amazing. I feel real joy just to watch her in action.