"TransFatty Lives," a film by Patrick O'Brien, sheds light on ALS.
Sayreville native Patrick O'Brien was 30 years old -- an aspiring filmmaker with an abstract touch and heavy influences from New York City's rave scene who went by the name DJ TransFatty -- when he was diagnosed with ALS, or Lou Gehrig's Disease.
A camera was there in the hospital room to capture the terminal diagnosis.
"How long do I got, doc?" O'Brien asks as his dazed family looks on.
That was in 2005. Later this month, a new documentary will be released on demand, offering an indelible portrait of the terminal disease and one artist's decade-long struggle to cope with its limitations and its sentence over the past 10 years.
"A lot of people have asked me what it's like to find out you're going to die," says O'Brien, the writer, director, narrator and subject of "TransFatty Lives." "It sucks."
O'Brien aims for hilarity, instead of self-pity. He remains resilient even as the disease, a neurodegenerative disorder, slowly robs him of his body -- "I could be an international playboy on a respirator, still?" In the first scene, he cannot walk without a cane; then he cannot walk at all; by the end, he cannot speak and is almost completely paralyzed.
His artist's brain carries on, however, in the hot pink walls of his hospital room; the semi-nude demonstrations outside the White House to raise ALS awareness; but especially in the film itself, which he directed by typing out instructions to his editors on a machine that tracks the movement of his eyeballs.
"As my therapist would say, it's enlightenment by shotgun. In a weird way, it's exciting," O'Brien says in the film.
In 2005, O'Brien was given two to five years to live. He now resides at a long-term care center in Massachusetts.
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The film is already earning accolades on the festival circuit, most recently winning an audience award at the TriBeCa Film Festival. It will be available on demand on Nov. 20, and will also have showings in New York City in late December.
Born in Edison in 1974, O'Brien was raised in Maryland. He went to film school in New York while living in Sayreville, where his father is the mayor.
O'Brien's early filmmaking forays included such titles as "The Man with the Smallest Penis in Existence and the Electron Microscope Technician Who Loved Him" and "Suicidal Eggplant," which won first prize at the New Jersey Young Filmmakers Festival in 1994. That ribald sense of humor and a louche lifestyle carry on; one promotional poster for the film features a photograph of someone pouring a bottle of beer into O'Brien's feeding tube.
O'Brien's father, Kennedy, plays a prominent role in the film, as does Patrick's own son, now 7 years old.
Cameras are rolling as Kennedy helps Patrick into the shower, just as they're rolling when Patrick meets newborn Sean for the first time. By the time Sean is home from the hospital, Patrick can't move his arms to hold his son.
"To me, my son is an emblem of Sayreville, and Sayreville is an emblem of my son," said Kennedy O'Brien. "In Sayreville, you get knocked down, you knock the dust off your pants, and you get back up."
In TransFatty Lives' darkest moments, O'Brien is languishing in a Maryland nursing home and has little contact with his son. And yet they've made it work, Kennedy O'Brien said, with visits and Skype.
"He loves his father, and his father loves him," Kennedy said of his grandson and son.
From a young age, Patrick had wanted to be a filmmaker. He was at work on a project about the Howard Johnson's restaurant in Asbury Park when he first noticed the symptoms of amyotrophic lateral sclerosis. The subject changed and the camera swung around.
"What if it's actually a beautiful disease?" O'Brien narrates. "What if the more physically disabled I become, is inversely proportionate to my journey inward?"
WATCH THE TRAILER HERE
Brian Amaral may be reached at bamaral@njadvancemedia.com. Follow him on Twitter @bamaral44. Find NJ.com on Facebook.
