“I grew up with this disease,” Patrick Sean O’Brien, director of TransFatty Lives, said using a speech synthesizer, from his motorized wheelchair. “It accelerates your soul.”
O’Brien was addressing a crowd of Tribeca Film Festival attendees, many of whom who had just been reduced to tears by his powerful documentary about his struggle with ALS, the same terminal neurodegenerative disease that Stephen Hawking has. The film ended up taking home the $25,000 Audience Award for Best Documentary, it was announced over the weekend.
“This is a very surreal moment but one that I’ll remember for the rest of my life,” O’Brien said at the film’s second screening, a little over a week ago.
Transfatty starts off in the Lower East Side, where the DJ and DIY director of B films such as Born Again Porn Star was living in May of 2005. That’s when, at the age of 30, he was diagnosed with ALS and told him he only had two to five years to live.
Even as O’Brien is stripped of his ability to speak clearly, walk, move his arms, and swallow (he drinks beer through a feeding tube into his stomach), he never loses his PMA, not to mention his sense of humor – “at least my middle finger still works,” he quips at one point. After moving back into his parents’ house, he tells himself that ALS is a “beautiful disease” that causes people to “stop focusing on things that are non-important and start focusing on things that are.”
But even if we laugh when O’Brien looks at his involuntarily vibrating tongue in the mirror and says, “Some girls like it,” it’s devastating to watch his motor skills decline and his father struggle to get his grown son into the shower. Eventually, the disease prevented O’Brien from editing the film. “One of the hardest things to do is crack the code of your film,” he said during the Q&A, with the help of his speech synthesizer. “I tried on my own and then ALS took away my fingers. I tried to edit with my eyebrows using a program called Switch. That sucked.”
Eventually, executive producer Doug Pray and editor Lasse Jarvi came aboard to turn nearly 100 hours of footage into a narrative of about 90 minutes. Despite the subject matter, the first half of the film is almost uplifting – O’Brien starts dating one of his brother’s friends and they have a child together. “My coughing fits and leg spasms actually come in handy as they rock you to sleep,” O’Brien writes to his son, in a letter intended to be read after his death.
But as the romantic relationship disintegrates and O’Brien is kept from seeing his son, his health – and his spirit – declines dramatically. During one particularly harrowing scene, he tells his sister to film herself as she cries while waiting for EMS workers to take him to the hospital. There, having lost the ability to expand and contract his diaphragm, he has to decide whether to be put on a ventilator that could financially wipe out his family. “It was time for me to make my decision,” O’Brien says, “Do I live or do I die?”
He chooses to live, but sinks into depression as he watches videos of his son growing up out of his reach. He seems destined to spend the rest of his days in a nursing home, as a self-described “electric vegetable,” until he’s invited to live at a home for ALS patients that boasts a salon, sauna, massages, and “spiritual stuff I forget the name of.” After raising funds online to get there, O’Brien learns to embrace himself, once again, as a “freak on wheels.”
Steve Saling, the architect who designed the high-tech residence with the goal of extending the lifespans of fellow ALS sufferers, also flew in from Chelsea, Massachusetts, where the home is located, to attend the film’s premiere.
So what’s O’Brien, now 40, working on next? During the Q&A, it came to light that he aims to bring one of his old films, UFO Mofo, to the big screen. In the meantime, to close out his Tribeca debut, he used his speech synthesizer to treat the audience to a round of “Rapper’s Delight.”
“Hip-hop and you don’t stop…”