January 3, 2024

Lessons on Living from Patrick O’Brien (LFCL Resident) in The Boston Globe

Photo by Stan Grossfeld of Patrick O'Brien

“As I See It” a weekly photo column by Pulitzer Prize winner Stan Grossfeld. This week Grossfeld vists with ALS Survivor Patrick O’Brien.

By Stan Grossfeld (Globe Staff)
(Click here to read on BostonGlobe.com)

Patrick O’Brien, 49, is trapped in a body ravaged by amyotrophic lateral sclerosis and hooked up to a ventilator. Doctors gave him two to five years to live. That was 18½ years ago. In 2005, he was known as TransFatty, a NYC disc jockey and filmmaker. Diagnosed with Lou Gehrig’s disease, he filmed his own decline in the documentary film “TransFatty Lives.” The New York Times called it “refreshingly unpredictable.” The film won the audience award at the Tribeca Film Festival in 2015. O’Brien did it as a valentine for his son, Sean, who was born two years into his battle with the progressive disease.

Today, he resides in the Leonard Florence Center for Living in Massachusetts, operated by the nonprofit Chelsea Jewish Lifecare. It has 21 residents living with ALS.

Everybody can learn something from O’Brien. “Being paralyzed is a lot like you might think. … But it has hidden joys and immaculate highs,” he wrote earlier. “There’s a bright side to ALS. I know that sounds twisted, but in a lot of ways ALS saved my life. Having a fatal disease turns the odometer of the soul back to zero.”

It has robbed his body but not his mind. He uses a speech generating-computer that reads his pupils to communicate. He blinks his eyes for yes and he frowns for no. Sometimes he pretends the tubes around him are a space station. Above his head is a portrait of his favorite Howard Johnson’s restaurant. In his dreams, he’s always eating treats.

“People may say: ‘Big deal, you can’t eat.’ But eating solid food — a Payday [candy] bar or just staring at it is my God-given right. I am entitled to compensation in the form of an Entenmann’s coffee cake,” he says.

But he has a serious holiday message for others.

“If I could say one thing in the globe, take care of yourself, and each other,” he says.

During a recent visit to the Chelsea center, O’Brien is upbeat and there’s a twinkle in his eye.

“When I think of all the people out there with no support, my heart floods,” he says. “I’m lucky because I get to live in one of the best ALS communities in the country.”

With team support, he has visited the White House and gone to Disney World and a Celtics game. He wants to film the volcano in Iceland.

Ever mischievous, he surreptitiously photographs his visitor and posts it on his wacky Instagram account @realTransFatty. He is also making a sequel to his film.

He’s not giving up either, despite the lack of a cure.

“I’m running a Marathon in my head, from bed,” he says. “So many people walk around with a meaningless life. This is because they are chasing the wrong things. The way you get meaning in your life is to devote yourself to loving others. Something that gives you purpose and meaning. In the end, what else really matters?”