In the fall of 2004, indie filmmaker Patrick O’Brien noticed an involuntary shaking in his legs. It wasn’t until May 2005 that the cause of the shaking was officially diagnosed as Amyotrophic Lateral Sclerosis (ALS, better known as Lou Gehrig’s disease). O’Brien was 30 years old at the time when he learned he had a terminal disease.
Today, O’Brien is in the midst of creating “Everything Will Be Okay,” a feature-length documentary about his life with ALS. Needless to say, O’Brien’s physical mobility has been severely limited by ALS (to a certain extent – there was the matter of a naked protest outside of the White House!). However, his passion for filmmaking has not abated.
Film Threat visited with O’Brien at his Washington, D.C.-area home to talk about his on-going project and life as a filmmaker with a terminal disease.
What was the genesis “Everything Will Be Okay”?
The genesis for the film, like the incurable disease itself, has unknown origins. I’m not being coy or cryptic. In reality I wasn’t making “real” films until I was told I was dying. I was making clever films, but not real films. I wasn’t getting down to the nitty-gritty of it.
Anyway, when I was diagnosed, a sort of spell came over me. I was exhausted after years of chasing the post film school fantasy of making a quirky indie feature. I was exhausted by 10-plus years of writing scripts, working with actors, etc. In the shadow of death, a short, simple documentary idea found me. At the time, I was certain that it was my last film.
The documentary was a meditation on a forgotten Howard Johnson’s restaurant located in a ghost town on the coast. I just wanted to catalogue it in a methodical, evocative and beautiful way. When the dailies came back, I was shocked. So, if there is an origin to “Everything Will Be Okay” – I think it was the confidence that the short documentary gave me. It was like: “Hey, we can do this.” Also, after 10 years of making fictional stories, there was something incredibly liberating about getting back to basics.
And how far along are you in the production?
I’m editing the two-hour movie by controlling Final Cut with a single thumb. I’ve cut 20 minutes so far. Then I had a hard drive die and I couldn’t edit for a month while the footage was re-transferred. I passed the time in Garageband making a new mix, and now I’m getting started again where I left off.
Since that initial ghost restaurant shoot in July 2005, there have been 10 other film shoots, mostly on 35mm, occasionally on HD. Presently, 5 terabytes of footage on 9 different external hard drives are in play.
I have more to film, but i don’t know what yet. Time will tell.
How do you keep yourself physically and emotionally focused on the creation of this film?
One part coffee, two parts Jesus and three parts pharmaceuticals. I have always lived to work. That’s when I feel most alive, when I don’t have time to think about dying.
I have a lot of time where I have to just lay there, thinking. I want to get up and work, but I can’t. My mind just wanders. I try out titles for the film: “Brain, Eyes, Penis”, “How to Die Smiling”, “Rock Forever”,” Bury Me with My 18mm.” Or I’ve noticed my life flashes in front of my eyes but in randomized increments of a moment in time, maybe once or twice per 24 hours. Like a memory of my first kiss behind the middle school, or a memory of stealing Hubba-Bubba bubble gum. Something strange is going on.
What was the story behind your nude protest at the White House?
If you’ve got it, flaunt it. And in my case I have ALS, so I thought I’d show people. Imagine if we could organize 100 nude people in scooters to descend on the White House: a fleet of disabled nudity. That’s my dream. For some reason there is not a “radical” faction in the ALS community. I think that’s why I did it. To “do” something on ALS Awareness Day, a tangible result, a visible presence, a visible protest in a fight where advocacy is largely invisible and for the most part, sadly tame. Especially against research policies which are mind-blowingly stupid-assed.
And are you planning any additional clothing-free appearances in the near future?
Who me? I’m doing this interview with no pants on. And this summer I am driving my hospital bed across America, pants free. A Guinness world record and an ALS awareness/ALS fundraising event.
You’ve used the Internet to call attention this project. What has the response been to date?
Thunderous and titanic. Sometimes when I’m having an off day, I look at the “Your messages” sections on the web site. I realize how small I am and how big the project is, how important it is to finish it, and how important it is to finish it correctly. A lot of people believe in me and over the past two and a half years have risen to the occasion so that this film could arrive where it is today.
Without the Internet and the worldwide kindness strangers have shown me, I’d be in Nowheresville. This whole journey has saved my soul; I should defiantly flesh out that angle in the film. As much as the disease has robbed me of much, “nature” gave me a pink, healthy, bruiser of a baby boy in November. Now we’re even.
How can the able-bodied film geek community help in bringing “Everything Will Be Okay” to completion and release?
There are a multitude of ways you can help :  bust out your film geek rolodex and spread the word;  host a screening of our promo DVD;  make a tax-deductible contribution to finish the film;  contribute services to the film;  link www.pobf.org to web sites / MySpaces pages / Facebook accounts, etc.; and 6] graffiti.
I have five years left to live. I’m cool with that. I’ve made my peace with death. I need one year, one year to concentrate on the work before me, to not be distracted with the how, but a year devoted entirely to the “what.” To have the means to finish my first and last feature and make it as rad as possible. To team with a production company, a post production producer, a killer editor, an inspiring composer and a visual effects artist. To streamline the completion of the film so my remaining time can be spent with my baby boy and family.