“As my therapist would say, it’s enlightenment by shotgun.”
—Patrick Sean O’Brien

Holy crap. I just finished watching TransFatty Lives, a documentary by Patrick Sean O’Brien. He’s been living with ALS for 10 years. I’m still digesting the movie, but also excited to write about it. The angles, the music, the appearances by Michele Dupree!

I caught my first glimpse of Patrick from across the crowded ballroom at last year’s ALS TDI White Coat Affair. He is a very large dude who was sporting a dyed Mohawk, and I found myself intimidated by his presence. Not scared of him, more just in awe of someone who was owning his situation so completely. The man is just so much cooler than me, a fact that was confirmed this morning as I watched his film.

Patrick was 30 years old when he was diagnosed with ALS in 2005. He was making a life for himself in New York City as a filmmaker, a writer, a DJ named TransFatty. His skill with a camera is obvious, and he sets up shots and scenes so masterfully that it’s no wonder the film won the Tribeca Film Festival Audience Award. It’s real, and difficult, but it’s also funny. There is laughter. There are hot pink walls. There is a very deep obsession with Howard Johnson’s.

At one point, Patrick says, “I never thought life could get more complicated than enjoying Menudo.”

But it did.

Throughout the film, despite dealing with the ravages of ALS, Patrick radiates strength. It’s in his physique, in his attitude, in his entire approach to life and his story. So even in the messier moments (and there are some messy moments), I didn’t find myself feeling sorry for him. He’s made his life into art, and done it in this beautiful, unusual way.

I think some of the most poignant scenes in the film come when the camera is turned on the people around Patrick. A scene with his sister where they’re waiting for an ambulance, and he just keeps telling her “videotape yourself” and she does, tears snaking down her cheeks while she watches him struggle to breathe. Scenes of friends and caregivers sitting on a couch one after another, a wordless introduction of sorts, all of the people who’ve surrounded this man.

And the scenes with his son, who he talks to throughout, using the mechanical voice that he explains is “my voice now.”

“Sean,” he says, “We live 1,305 miles apart—and more, because when you are near me, I am still too far away to talk to you. But I look at you all the time.”

It’s hard for me to imagine living away from Scarlett, and so I couldn’t really comprehend that part of Patrick’s life until I watched it play out on the screen. Patrick lives in Boston in a facility that was designed to house residents with ALS. His son, now 7, lives with his mom in Florida. Even though life does all of these things we don’t expect and can’t prepare for, Patrick seems single-minded in his mission to share his life with his little boy: both the way it used to be and the way it is now. The film is for Sean. The rest of us are just lucky we get to watch it, too.

Check out the trailer–you’ll want to see more.

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