Patrick Sean O'Brien in "Transfatty Lives"

“Being in this room with Patrick here, I’m trying to take in every minute of this,” said Michelle Dupree, a friend and frequent creative collaborator of “TransFatty Lives” director Patrick Sean O’Brien, in complete disbelief at the swanky surroundings where she and O’Brien found themselves at the Conrad Hotel in New York. It wasn’t the plush suite that impressed Dupree so much as everything inside of it – members of O’Brien’s family, various members of the filmmaking team dashing in preparing for the film’s second screening at the Tribeca Film Festival after a triumphant premiere the night before, and the film’s promotional materials splayed on the walls and around the room. For most filmmakers, a splashy New York debut is the impossible dream, but in the case of “TransFatty Lives,” the odds were longer than most considering O’Brien made the film about his experience of living with the physically debilitating disease of ALS.

Even if O’Brien wasn’t lying in a bed directly in the middle of the room, there’s no doubt he’d still be the center of attention. A shock of vivid colors from head to toe — his hair is shaved into a hot pink mohawk, with socks of cascading red, green and yellow peeking out at the far end of the bed – his prismatic appearance is only outflanked by the bursts of personality that are undiluted even with the filter of the computer that gives him a voice. When asked if he had documented himself prior to contracting ALS, he concedes, “I’m a ham,” and as the film’s creative consultant Doug Pray, the director of “Scratch,” “Surfwise” and “Levitated Mass,” laughed about the film’s unusual production process, there were more than a couple times when the production team would wait with baited breath for O’Brien’s approval on a crucial scene and O’Brien would tease them with such deadpan replies as “I’m taking a shit.”

It becomes obvious that it isn’t because of his condition that O’Brien is the only person who could’ve made “TransFatty Lives,” the insights into ALS certainly informed by a constantly active mind that lives inside a body that’s been rendered immobile, but because it’s conveyed in enthralling cinematic terms that he cultivated as an experimental filmmaker. Laced with a wicked sense of humor that seems appropriate for someone from born a stone’s throw away from John Waters in Maryland, the film may chronicle his life before the disease and after it, but can be more accurately described as an immersive journey into it, eschewing the white gloves that often handle stories of this nature to dig right in, feverishly told as if it were an act of defiance. (It’s no accident that as his body begins to seize up, O’Brien notes “My middle finger still works.”)

Similar to Jonathan Caouette’s groundbreaking “Tarnation,” the film takes on the quality of being a direct portal into O’Brien’s mind, complete with exhilarating imagery that would be unimaginable in reality. Clips from his previous short films are reused and recontextualized to speak to his present state, but O’Brien also tinkers with such tools as fish-eye oscilloscopes and drones to give “TransFatty Lives” a distinctive immediacy. (When this is brought up, O’Brien’s father, sitting nearby, seemed a little chagrined to be the one signing for all this equipment that would arrive at the family’s doorstep.) Friends and family pour in and out of the film, keeping him active by taking him out trick ‘r’ treating or riding on motorcycles. And while someone with such a wild personality hardly lends himself naturally to a traditional story arc, one takes shape when he meets Laura, a friend of his sister’s who ultimately becomes his wife and the mother of his child Sean, whose birth likely shaped the film as much as anything. O’Brien describes becoming a father as “profound.”

When I arrived in O’Brien’s room, an attendant was feeding him water through a tube, similar to what’s pictured above. Then a Starbucks Iced Latte from a can, though it didn’t appear as if he needed the energy boost. After all, he had just strolled down his first red carpet the evening before and likely floated out of the theater after the film received three standing ovations from the packed house as the credits began to roll.

“We were like, ‘Sit down so you can see the animation!” Doug Pray says with a smirk, alluding to the funny stick figures that mess around the titles, fittingly displaying for its subject a creativity and mirth that lasts until the very last frame. It was actually both the arresting artwork and the lyrical passages that Pray found in O’Brien’s journals that drew him to the project a year-and-a-half ago. Along with editor Lasse Järvi, he took what O’Brien had created as a rough cut, what he calls now even more “arty and experiential” and worked with the filmmaker to give audiences something they could hold onto. More collaborators would come on throughout the production to make sure O’Brien’s vision of the film made it to the screen intact, many of whom hadn’t met in person until the evening of the premiere.

“It’s like a reunion where I hadn’t met half the people,” marvels Pray, who was not only introduced to people who worked on the film, but also people who appeared in it, including people who knew O’Brien when he was raising hell in New York’s Lower East Side and his classmates from the School of Visual Arts, which in a nice full-circle coincidence serves as one of the Tribeca Film Fest’s venues.

For O’Brien, it’s clear the experience of making “TransFatty Lives” has given new definition to the idea of living through film. Originally diagnosed in 2005, he has well exceeded the average three- to five-year life expectancy of most ALS patients, using the time to not only make “TransFatty Lives” but bring awareness to the disease through his blog, which along with the Friends of Patrick O’Brien has also helped alleviate the burdensome costs of both the film’s decade-long production and his medical care. When I ask him if there’s anything specific he wanted to convey about himself or his disease, O’Brien’s eyes darted around the keys of his computer to speak. “Don’t count anyone out,” he said.

“Transfatty Lives” will be released on November 20th on VOD and in theaters.