My friend Tim LaFollette is dying.
He was diagnosed with ALS — better known as Lou Gehrig’s disease — back in October, and now the disease is not so slowly robbing him of his physical presence, his ease in articulating his limbs, his ambulatory power. Eventually it will take away his ability to breathe.
He knows this — he watched his mother and grandmother die from the same dreaded affliction. His wife Kaylan knows. And all his friends know it too.
But that doesn’t mean we have to just sit there and take it.
LaFollette’s friends have banded together to form the Often Awesome Army, a galvanized force of artists, musicians, organizers, journalists and connectors who strive to make the next few years as comfortable for the young couple as they can. Fortunately for Tim and Kaylan, the two have a lot of creative contacts.
There have been fundraisers and benefits; a Facebook group and a website are up and running. There is a blog. And last month local filmmakers Andy Coon and Blake Faucette launched their contribution to the Often Awesome canon: a web series that will document the ongoing battle against ALS.
“It means a lot to me to be a part of this, to tell his story and show the people helping him out,” says Coon, whose film credits include documentaries, feature films, corporate projects and music videos. “It’s the kind of thing I’ve never been around.”
In its first two episodes the series has tackled the diagnosis, recounted by Tim and his wife with admirable detachment, and the Often Awesome Army itself, a remarkable coalition of people who have been touched by LaFollette in one way or another.
The result is compelling: a love story, a tale of inspiration and friendship told using new media, a tragic biopic played out in real time. And LaFollette as leading man is both humble and philosophical.
“I guess I’ve always had a good ability to accept the way things are,” he says from his wheelchair in Episode 2.
“It’s not a reality show,” LaFollette says over the phone. “It is meant strictly to tell the story. It’s not being voyeuristic.
“When you come down to a point like this, where you’re pretty much given a deadline on your life,” he continues, “you need to have a purpose, and my purpose is that, as I go down, people hear about this disease. It’s a very confusing, mysterious disease. I want to see the pace of research pick up. That takes money and it takes awareness.”
He says he hopes that by documenting his battle and giving a face to this rare disease — it affects about 30,000 people at any given time — ALS will emerge from under the radar and perhaps garner some more medical attention.
“The goal is before the 120th episode I want to have at least 10,000 views per episode,” LaFollette says. “By the 20th episode, I want 100,000 views per episode…. If we’re not always working for awareness, we’re doing our own cause a disservice. The quieter we are, the less chance we have of curing it.”
The Often Awesome Army is on it. Coon says that new episodes will appear every two weeks.
“Episode 3 is called ‘The Luckiest Man,’ and it’s about Tim doing the Lou Gehrig speech at the [Durham] Bulls game,” Coon says. “We’re taking our time with this.”
“They’ve got enough interesting stuff in the first three or four months post-diagnosis that they could fill hours in just that time period alone,” LaFollette says. “They’re coming to my house, coming to band practice, coming to my treatment, and they’re not getting paid for it.”
But this is about much more than money, Coon says. “[Tim]’s such a great person,” he says. “Right now, what were doing, everything is great. But its going to be different once he starts fading — that’s just something we’re gonna have to deal with. It’s gonna be hard, but this is gonna be his legacy. This is something that’s gonna be there forever.”
wanna watch? www.oftenawesome.org www.allacesmedia.com
Tim LaFollette, who was diagnosed with ALS last year, is the subject of a web documentary series. (screen capture)