Art in a Life with ALS
Documentary chronicles Orlando man's struggle to paint while under the effects of Lou Gehrig’s Disease
Life was good for Orlando business owner Dan Ellis in the spring of 2009. He had a wonderful marriage, three happy children and a successful printing business. But by that fall, he’d begun to slur words and suspected something was seriously wrong with his health. Ellis was diagnosed with progressive ALS, a debilitating terminal illness also known as Lou Gehrig’s Disease, in 2010.
The 18-minute short documentary film, “Dan Behind His Eyes,” chronicles Ellis’ time spent creating giant paintings with his daughter Gina in 2011, by which time he had lost nearly all muscle control and could only communicate using a Dynavox eye movement sensor. The film will premiere at the World Arts Film Festival at the Museum of Contemporary Art Jacksonville on April 11.
“I wanted to use art and music and color. Dan surrounded himself with art, and that’s who he was,” said Sheri Kebbel, the film’s director and producer. “So this film, I wanted it to be so that people would not look away. That it was not so ugly and so hard in knowing that it was a terminal illness to where they have this feeling of ‘Well, what do you want me to do about it?’”
Kebbel filmed the Ellis family from November 2010 until March 2012, just a few months before Dan Ellis lost his battle with ALS last June. In addition to the short documentary “Dan Behind His Eyes,” Kebbel directed and produced an hour-long, feature-length film which follows Ellis’ interactions with family and friends and his artistic collaborations with his children and hip-hop rapper MC Serch while in the grip of progressive ALS. The feature film is currently in post-production and will be submitted to film festivals in the fall.
Kebbel will join Kevin Boylan, medical director and founder of the ALS clinic at Mayo Clinic in Florida, and Kim Hanna, president and CEO of the ALS Association Florida Chapter, for a short question and answer session after the short film premiere at MOCA Jacksonville.
“I really believe that this is a little piece of a very big quilt of different ways to show an illness or a challenge that is beyond most of our imaginations of ‘what would we do,’ and ‘how would we survive?’” Kebbel said. “It’s just a little piece to join hands with all the other ways of telling stories of ALS families, and really looking for the funds that will find a cure.”
For more information about the ALS Association Florida Chapter, visit www.alsafl.org.
Link to film trailer: http://www.saytruefilms.com/