North

Immobilized but unbroken, filmmaker turns camera on himself

John Tlumacki/Globe Staff photos

Patrick O'Brien’s computer reads his eye movements to spell words.

Patrick O’Brien described his life as a bachelor in New York as “chasing girls, drinking beer, raising hell, and doing my thing.”

He ran a small company called TransFatty.com — named for his love of junk food — out of his apartment on the Lower East Side. He was a disc jockey, Internet personality, and art filmmaker.

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In 2005, everything changed. O’Brien, then 30, was diagnosed with amyotrophic lateral sclerosis, the progressive neurodegenerative condition also known as Lou Gehrig’s disease.

“I had always wanted to write feature films,” he said. “I was looking for a subject. Then the subject found me.”

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O’Brien spent the next 10 years making the documentary “Transfatty Lives.” The film won the 2015 audience awards at the Tribeca and Milano film festivals. The Boston premiere is at Showcase Cinema in Revere on Sunday.

O’Brien, now 40, is entirely immobilized and on a ventilator. He directed and produced “Transfatty Lives” by using his eyes and eyebrows to communicate through a device attached to his computer.

“ALS is a fatal and incurable disease,” O’Brien wrote via e-mail from the Leonard Florence Center for Living in Chelsea. “I have chosen to do something with my illness. As you will see, I turned the camera on myself and began to document my journey with ALS. This challenge has given me a focal point for my energies, and will hopefully inspire others to keep moving through their own adversities.”

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O’Brien said the project was possible through “the support of too many people to count; people who donated their time and energy, people who donated their expertise, and hundreds who donated to my crowd-funding campaigns over the years.”

Independent film crews of friends and family helped with the production. “Everyone got a chance to run the camera,” he wrote. “On a film like this, spanning 10 years of one person’s experience, whoever is in the room at the time becomes the crew, becomes the cast, becomes the film. That is how I roll.”

As for the recognition the documentary has already received, he wrote: “Winning the audience award at the Tribeca Film Festival was a dream come true. Absolutely mind blowing.”

O’Brien said “Transfatty Lives” is available on iTunes, Amazon, and other digital platforms. People also can host a screening in their community or school through Tugg.

The target audience, he said, “is anyone and everyone. While the film is definitely edgy and provocative, the feedback I have received is also that it’s heartwarming and life affirming.”

O’Brien, who is originally from Edison, N.J., was languishing in a traditional nursing home in Baltimore when he hooked up online with landscape architect Steve Saling, who also has ALS and uses his eyes to communicate. Saling helped design the first residence that allows those with the disease to live independently. Opened in Chelsea in 2010 and named for Saling, it has 10 private bedrooms and common areas that feel like home.

Barry Berman is the CEO of the Chelsea Jewish Foundation, which administers homes for the disabled in Chelsea and Peabody. Berman went to visit O’Brien in Baltimore, and soon after O’Brien moved to the Steve Saling ALS Residence at the Leonard Florence Center for Living.

Besides producing films, O’Brien now travels and attends concerts, sporting events, movies, and parties.

“The film is raw,” Berman said. “Life with ALS is not a beautiful picture. And he doesn’t hold anything back.

“But, it’s not offensive,” he added. “He is humorous and clever. People will be crying and laughing.”

Berman said O’Brien “is brilliant,” adding that with ALS “the mind stays intact while everything else withers away.”

O’Brien wants to create more projects. “I am always working on films in my head and have big plans for the future,” he wrote.

For now, he will be attending the screening of “Transfatty Lives” in Revere, participating in a question-and-answer session, and will be the star of the following reception. The show is at 10 a.m. at the Showcase Cinema, 565 Squire Rd. Tickets are $20 and all proceeds benefit the Patrick O’Brien Foundation.

“It gives him a purpose and a life,” Berman said. “Here’s a person they never thought would get out of bed again. And now, he’ll be in his pink tuxedo at his Boston premiere.”

Wendy Killeen can be reached at wdkilleen@gmail.com.
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