Filmmaker with ALS regains a lot with chance he takes on his art and eye-gaze technology
Probably few people would argue that Patrick O’Brien is a free spirit, or that he approaches life in an outrageously good way. Some may shy away from the raw satirical way the 41-year-old avant-garde filmmaker and former world famous New York City disc jockey/internet celebrity approaches his art. But all bets are on that many or most people who watch Patrick’s acclaimed autobiographical documentary “Transfatty Lives” would agree he has a lot of heart.
Ten years in the making, the film received the 2015 Audience Award at New York City’s Tribeca Film Festival and similar accolades at numerous other international film fests. Its title, sometimes lengthened to “As ALS Kills…Transfatty Lives,” is a nod to Patrick’s DJ name and his liking for donuts. Patrick wrote, directed and narrated the film through a series of Tobii Dynavox communication devices controlled with his eyes. He refers to the technology as a “ticket to salvation” for individuals who, like him, lack the ability to speak, use their hands or move about freely. “It’s an opportunity to take back what you have lost.”
Patrick has ALS—clinically known as amyotrophic lateral sclerosis, commonly as Lou Gehrig’s disease. Along with the unsettling diagnosis in 2005 came the news that he probably had two to five more years to live. Patrick took it as a license to set out on yet another creative venture.
Avoiding the beaten path of clichés about conquering adversity, Patrick makes sure everyone who sees “Transfatty Lives” has a window seat while accompanying him as he relives his unique physical, intellectual, emotional and spiritual travels of the past decade. The offbeat yet somehow refreshing ride recalls a romance early in the course of his ALS and the birth of his only child. Sugarcoating nothing, Patrick fills every frame in the movie with vivid words, sound and imagery to convey how the debilitating condition affects him—and those near and dear to him—inside and out. Instead of complaining, he imagines, “What if my diminishing physical abilities can be inversely proportional to my journey inward?” He confesses it’s no fun knowing you’re going to die, but also says, “In a weird way, it’s exciting.”
Strange as it may seem, Patrick sees his ALS as freeing. “I’ve become a better person for it,” he says in the film, which is geared toward mature audiences. “I’ve also witnessed those around me transform.” He treats his illness with attitude, appearing both serious and self-deprecating when he notes that family members and friends, many of whom are in the movie, consider his situation an excuse to party and that everyone is nice to him now.
Patrick dedicated “Transfatty Lives” to his son Sean Patrick, who is the star of its softer moments and appears in a later scene at the Leonard Florence Center in Chelsea, MA, the long-term care residence where Patrick lives. In one of the opening scenes, Patrick is heard reading Sean Patrick a letter. “Don’t be nervous or scared of this letter,” he says. “I’m just trying to connect with you.” The film recalls Sean Patrick’s birth. Patrick tells his son, “I was sad because I knew you’d never get to see the old me” and “I know you’re only seven, but can you have your lifetime’s worth of questions ready for me?”
Like any other dad, Patrick may or may not be surprised by those questions. He feels fortunate to have the technology to help him formulate answers to provide a legacy for his son.
On another level, Patrick wants his interactions as filmmaker and friend to be memorable in a positive way. “Transfatty Lives” indeed makes it clear that he prefers to spend time living than explaining. When he first uses an AAC device in a Maryland nursing home, for example, he tells his communication partners, “It’s my new voice. Get used to it.”
A speech-language pathologist at Leonard Florence recommended the Tobii Dynavox I-12 that Patrick currently uses. Patrick gives a shout-out to Team Gleason, for purchasing the device. Like former New Orleans Saints football player Steve Gleason, who founded the ALS awareness and advocacy organization after his own diagnosis with the condition, Patrick keeps the bigger picture of his circumstances front and center through his signature artistic work.
“Transfatty Lives” is coming to Netflix June 15 and available through a number of other streaming services. The film, which is not rated, contains adult language and subject matter. Click here to learn more about Patrick and his film. Visit here for information on the non-profit foundation established to pay for Patrick’s care and provide for his son.