CULTURE

Frail, but indestructible inside

THESSALONIKI – When Ben Byer was diagnosed with the life-threatening ALS, or Lou Gehrig’s disease, seven years ago, he asked for a video camera. Now 37, Byer has written, directed and produced «Indestructible,» an autobiographical tour de force. No small achievement for someone that was given just five years to live. It must have something to do with character. And in the movie, Byer does come across as a member of that strong, upbeat breed. «In all honesty, I think that this is what has kept him alive for so long,» said his sister and co-producer Rebeccah Rush in an interview at her Thessaloniki hotel. «He’s only one of the 10 percent of people who live longer than five years, you know,» said Rush, who flew here to present the film at the annual Documentary Festival only to learn that her luggage had been lost. Byer first started the filmmaking process as a series of video diaries. He was an actor and writer before he was diagnosed, so filmmaking was a natural progression. Although he had already done a few short films, writing was definitely more his medium. «When he was diagnosed and the physical effects of the disease took over his body, it became very difficult for him to act on stage. His diction was severely impaired and his hands weren’t working as well as they used to, so he borrowed a camera from a friend and started filming himself,» Rush said. What starts out as an amateurish bio-documentary turns into a journey across the rough and largely uncharted land of ALS. Amyotrophic lateral sclerosis, also known as Lou Gehrig’s, after the famous ballplayer who was among the first to have been hit by it, is a terminal neurodegenerative disease that shuts down the body but not the mind. It has «brought science to its knees,» says a medic interviewed by Byer in the movie, while one neurologist describes it as «the grim reaper.» Over three years Byer travels across five countries to meet up with fellow sufferers and explore alternative but often dubious cures. When all else fails, he travels to Jerusalem to see «what Judaism has to offer me.» But he finds little there. Ben is not a religious person, Rush said. «But I think that with that experience he has definitely had his spiritual moments in life,» she said. Has he ever considered suicide? «Yes, I think he has,» Rush said. «He doesn’t really talk about it a whole lot. After all he has a young child… I too have kids and I would want to spend every minute that I possibly could with them,» she said. The separated Byer is often seen playing with his camera-savvy son John. In the later stages of the movie the young boy is feeding Ben spaghetti. It’s father and child in reverse, in what is one of the sweetest but also most heartrending moments of the film. Byer braves most of the setbacks (the movie got its ironic title from a scene where Byer pokes fun at himself after collapsing, for the first time, on a street in China. «I am indestructible,» he shouts out laughing as the ambulance door slides shut). Yet the documentary gets increasingly difficult and unsettling as his health declines and the simplest daily things become torture. As when he is seen struggling to remove his shirt for over a minute that seems like an age. These days the Chicago-based Byer is in a wheelchair, he can barely move and his voice is slurred. But he still tries to keep track of the movie’s progress and runs a blog, using eye-tracking software, at indestructiblefilm.com. «Indestructible» has already been screened at 8 festivals, won two awards, and is set to feature in two forthcoming events. «My brother is more productive and he is contributing more to this world than so many people I see,» Rush said. She also recognizes that the filmmaking process has been a therapeutic experience for Byer, his family and all the people involved, giving them a sense of purpose and something to focus on. «It’s not a distraction, because I am bombarded with death and dying. But it has really helped me to channel my energy into something positive,» she said. Not surprisingly, the biggest challenge for the moviemakers is getting people to come and see the film. Even usually hardcore documentary viewers tend to shy away from difficult and sad movies. But attitudes change, Rush said, once people have actually watched the film. «People who have never had any interaction with ALS find the movie to be incredibly moving and inspiring and poignant in their own lives,» Rush said. «A woman came up to me last night and told me that this movie speaks very strongly to anyone who has had to face any sort of challenge and also to people who realize that they could have – and this is pretty much everybody,» she added. Rush says that working on the film is not just about Byer, about her or her family anymore. «It’s about what this means to people, and what life means to people.» Knowing that such tragedy can happen to anybody, anytime, anywhere, Rush said, has allowed her to live with more intention, to live deliberately and make the decisions that she makes because she realizes that life is precious and can end any time. «Why waste your time on things that don’t matter?» she asked. «That does not mean that I don’t get upset because the airline lost my luggage. But I keep it in perspective.» «Indestructible» will be shown tomor-row at the Olympion theater at 3 p.m.