Patrick Sean O’Brien with his son, Sean, who served as Patrick’s motivation for completing his documentary film, “TransFatty Lives.” Patrick has been battling ALS for more than 10 years, striving to complete his film for his son the entire time. Patrick Sean O’Brien has been fighting amyotrophic lateral sclerosis (ALS) for a decade, but that has not stopped him from creating a documentary about living with the debilitating disease.
O’Brien began making films in 1992, prior to his graduation from the School of Visual Arts in New York City. He was diagnosed with ALS in 2005.
Now, with the completion of his documentary, “TransFatty Lives,” a play on O’Brien’s Internet persona DJ TransFatty, he is looking forward to the world premiere at the TriBeCa Film Festival in New York.
“When my wheels hit the streets of NYC, I expect a feeling of total elation. NYC is my long lost friend and to have my film premiere at the TriBeCa Film Festival really is a dream come true,” O’Brien said.
“When I was told I had two to five years to live, I thought I better hurry up and get this film finished. But by the grace of God and good care, family and friends, I continued shooting. While my story is far from over, this part of my life, this story for my son, is ready for the big screen,” he said.
A decade after he was diagnosed with ALS, O’Brien, 40, can still feel someone else’s touch, but he is unable to move with the exception of his eyes and the corner of his mouth. He uses specially adapted software that responds to his eye movements, allowing him to type emails.
O’Brien said he is losing sleep over the excitement of seeing old friends and family members at the premiere, as well as connecting with people fighting ALS whom he knows through social media.
“I’m also excited to finally meet my editor and producers who have treated and cut my film with diamonds,” O’Brien said. “They are my friends for life now and I look forward to thanking them in person.”
ALS causes the deterioration of motor neurons that control communication between the brain, spinal cord and muscles. This can lead to lack of muscle control, paralysis, muscle atrophy and, ultimately, death.
O’Brien, who is the son of Sayreville Mayor Kennedy O’Brien, is a patient at the Leonard Florence Center for Living in Chelsea, Massachusetts.
According to O’Brien, creating the film helped him cope with the physical deterioration caused by the disease. By documenting his struggle, he has found the motivation to fight on. As his personal mantra goes: “Go out fighting.”
With the help of producer Doug Pray, O’Brien completed the project, which documents his struggle with ALS from his initial diagnosis until present day.
“It’s been a heartening project to work on because there have been a lot of donations of people’s time and energy,” Pray said. “I have learned a lot about ALS, which I knew absolutely nothing about until looking at O’Brien’s footage. I have also learned how fortunate I am.
“No matter how crazy or bad a day I have been having, when I am working on this project and corresponding with Patrick who is there in bed thinking about this movie and coming up with ideas, yet unable to walk or move his arms or anything but his eyes, it puts everything into perspective. It makes you realize how lucky we all are to be able to get around,” Pray said.
Pray and the rest of the team took on the enormous task of compiling more than 10 years of footage, reconstituting it into a single format and editing the clips into a fulllength documentary.
Pray said he would sometimes find himself wondering why he was working on “TransFatty Lives,” only to find O’Brien’s humor to be a motivating force.
After 18 months of working with O’Brien, Pray said he is “at a loss for words” when trying to describe how inspiring O’Brien has been.
“The fact that he is making the inordinate effort to get transported from Boston to New York City for his premiere is, in itself, a triumph of character. I can’t wait for our world premiere,” Pray said.
The film will premiere at the TriBeCa Film Festival at 6:15 p.m. April 16. Additional screenings are scheduled for 5 p.m. April 17, 8:45 p.m. April 21 and 6:30 p.m. April 23.