Category Archives: Faces

TransFatty Lives

“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. Read More>

Video blog!

From ALS TDI’s 11th annual Leadership Summit last month.

Sarah Kalail

This morning I found out that a woman named Sarah Kalail had passed away from ALS. I didn’t know Sarah well. I don’t know how old she was or when she was diagnosed, but I do know she had grandchildren. Sarah and I were both on the President’s Advisory Board for The ALS Association. Her contributions to our calls came in the form of a computer-generated voice, which she used to talk about concerns for her family, the finances of those suffering from ALS, and the patient care piece of the disease. Sarah was outspoken, despite her inability to speak.

There are so many people who knew Sarah better than I did, and they will do the job of remembering her and sharing stories, so that the rest of us can learn more about her life. I just feel sad. Sad that someone who was once healthy and alive isn’t that way anymore.

I’ve been scrolling through Sarah’s Facebook page this morning, reading the posts of the people who miss her. I read some of Sarah’s own posts, including one about traveling—something I wrote about so recently. Sarah once loved to travel, to explore new cities with her husband and their sons. By 2013, she could no longer travel by plane, and even driving for long periods of time was difficult. But, she wrote “I find great solace in my memories.” Read More>