READ MORE: Review: ‘TransFatty Lives’ is a Groundbreaking Documentary About Living With ALS
I’m a big subscriber to the
notion that the show must go on. I’ve always been that way.
In my twenties, toys, girls, music,
drugs…they all obsessed me. Yet more than anything, I was into filmmaking. I
spent most days trying to develop a feature — I must have written 10 scripts by
the time I was 30 — and all the while I was making short films.
In the fall of 2004 I noticed
an uncontrollable shaking in my legs. By the following year I had been
diagnosed with ALS — Amyotrophic Lateral Sclerosis (also known as
Lou Gehrig’s disease). When I got sick and was told I had two years left, it was
like “last call.” I had to make a film now or know I never would. That’s when “TransFatty Lives” was first born.
Ian Dudley was the cinematographer I reached out to. We had
already been working together, so he just turned the camera on me and we started
filming what I was going through. Marcia Mohiuddin – who is now his wife – came
on to produce. At the time, I was living in a railroad apartment on the Lower
East Side and none of us had any idea about the journey we were all about to
Our first shoot was a crazy weeklong Jersey ride. We ended up at a relative’s house deep in New Jersey with
some authentic prohibition-era moonshine. If ever in life there is a time to
drink the family’s heirloom moonshine, it was then. It was a great night, and a
great shoot, although I think a couple people may have ended up moaning loudly
from the bathroom. Part of that night actually is in the film.
Another great early shoot was in
Kmart. I wanted to shoot inside the store with a film camera — at that time we
were using a small 35mm Russian film camera that happened to be very loud — so
the whole time we were shooting, we were playing cat and mouse with the store’s security.
We had the crew moving in various directions to distract them and serve as
lookouts. The scene didn’t end up in the film — we shot a lot of footage
that didn’t make it into the final cut — but it is a great memory.
Darin Hallinan is another
producer on the film and he was also involved from the beginning, pushing the
project along. Michele Dupree is one of the film’s producers and a truly great
friend. In fact, I had to force her to take a producer credit. How many
filmmakers can say that? Michele and Darin were there for me throughout the
process, until the very end. In fact, they are still working on it now — I’m learning that although you deliver a film, it is never really over.
The film’s composer, Bradford
Reed, also got involved early on. He now has a rule to never work on a film
until the cut is locked — but with “TransFatty Lives,” he was working on composing
the score on and off since 2005. He came to visit with an old collaborator of
mine, and the film’s lead animator, Aaron Augenblick, in the intensive care
unit where I was in Baltimore in 2009. This was post-tracheotomy and I couldn’t
speak and he and Aaron and I were trying to communicate by my blinking and
using a wall alphabet chart since my eye tracking machine had not been set up
for me that day. This took the struggle to communicate — which most filmmakers
have — to another level.
Documentaries are always hard,
but this one was especially so because the longer it took to make, the harder it
was for me to function physically. Project partners would come and go, my
living situation kept on changing, and even the world around me was changing — I shot most of “TransFatty Lives” on 35mm and when we finished Darin and I
delivered it digitally, which I couldn’t have imagined when I first started.
Many films use
crowdfunding these days, but what is unique about my situation is that my whole
life after the ALS diagnosis became crowdfunded. The support of strangers
sustained me through my darkest days, and even paid to get me on an air
ambulance so I could travel to Boston where I am currently living. It is not
only the film that happened because of strangers — the outpouring of love and
generosity of complete strangers is what has given me my quality of life today.
Facebook and many in the ALS community have become my extended family. I have
also met people I never would have known, like the film’s executive producer,
Skip Klintworth, whose company, Oscar Crosby Films, helped us finish. I knew I
had to deliver something amazing for these people who were supporting me. After
all they had done for me I could not let them down with a mediocre film.
A real turning point in the film’s
journey came when Bradford Reed introduced me to Doug Pray. I am a fan of
Doug’s films — “Hype!,” “Scratch,” “Surfwise” — and we clicked. He agreed to
come on as a producer and brought Lasse Järvi on as editor. Other
editors had been heavily involved throughout the process, and I had done some
editing myself, but Lasse helped find the film’s voice. He didn’t have all the
baggage of making and living this film for close to 10 years and could look at
it with fresh eyes. Suddenly the film was not just my life, but a drama (and
occasionally a comedy). Doug also got another producer involved, Amelia
Green-Dove, who began handling years of unfinished legal clearances, submitting
the film to festivals and managing our search for distribution.
We could not have had a better world premiere than at the
2015 Tribeca Film Festival. For so long, I thought New York had defeated me. I
had left the city heartbroken and dying. To come back with a finished feature
was unexpected and liberating. I wore my favorite pink suit and a mohawk, and came
with a team of medical aides as bodyguards. To then win the Audience Award was
crazy — and to keep winning audience awards at the other festivals has been surprising
and rewarding. It means so much to me, to know the film is touching people and
having an effect.
In the end it is a really personal film — and a gift to my
son — but sometimes I think it is the personal stories that end up being the
most universal. As Jim Morrison asked, “Did you have a good world when you died? Enough to base a
Patrick O’Brien is the writer, director and star of “TransFatty Lives,” which won the Audience Award for Best Documentary at the 2015 Tribeca Film Festival. You can read more about the film here.
“TransFatty Lives” will be released in Los Angeles on November 20 and New York City on December 25.
READ MORE: Watch: Exclusive ‘TransFatty Lives’ Clip Documents Patrick O’Brien’s Decade-Long Struggle With ALS