Before the Ice Bucket Challenge helped enlighten the world about amyotrophic lateral sclerosis (ALS), Charleston documentary filmmaker Andy Coon was in Greensboro, N.C. doing his part to spread awareness by creating the award-winning web series Often Awesome. Along with co-creator Blake Faucette, Coon began filming the 36-episode series in 2009 after their friend, Tim LaFollette, was diagnosed with ALS. The series' name was inspired by LaFollette himself, who, summoning the incredible resilience and humor he was known for, said his tombstone should read, "Often awesome."
The series reveals much more than the horrific realities of the illness. Often Awesome is a self-proclaimed ALS love story that closely documents LaFollette's battle and his relationship with his girlfriend Kaylan Szafranski. It was being filmed up until LaFollette's passing on Aug. 23, 2011, a month after Coon relocated to Charleston for work.
Since then, the series continues to gain recognition, picking up awards at the Vimeo Festival, Webby Festival, and LAWebFest, where it has earned honors the past three years. Over the summer, Often Awesome won an Outstanding Diversity Award at the Melbourne Web Fest, and it's currently up for another accolade at Atlanta's ATLWebFest. Coon is also currently working on newer projects, like Talent Freaks, a series about the creative process of Charleston artists like muralist Douglas Panzone.
Yet despite Coon's other video ventures and his full-time job in the Benefitfocus media department, further advancing Often Awesome remains a priority. "We feel like the series still needs to be seen regardless of the time," Coon says. "Anyone at anytime could pick it up and watch it. It's relevant."
But before Often Awesome the series, there was the Often Awesome Army, created unwittingly by Szafranski. Within 10 hours of her starting the Often Awesome Facebook group, hundreds of supportive emails poured in. Those two words quickly came to symbolize the community's love for LaFollette, a person they'd come to know as a local musician, a video editor, a charismatic guy, and a good friend.
Through benefit art exhibitions, concerts, and much more, people near and far wanted to help raise money to make the lives of LaFollette and his family a lot easier. The Often Awesome movement snowballed. It soon had its own logo depicting a silhouetted LaFollette and his cane, leaning to one side in the way of his idol, Charlie Chaplin.
Coon quickly realized he was in the midst of something special. "They were doing something great, something above and beyond themselves," Coon says of LaFollette's support system. "They were just friends — they weren't all even loved ones. It was even people who really didn't know Tim to begin with, but would come in and just do whatever they could." That's when Coon, co-founder of All Aces Media, knew he had to document what was happening.
Also called Lou Gehrig's Disease, ALS is a progressive neurodegenerative disease affecting nerve cells in the brain and spinal cord — or as LaFollette aptly put it in the 13th episode, "a shitty fucking disease." The degeneration of motor neurons, which reach from the brain to the spinal cord and then to the muscles throughout the body, eventually leads to death, usually within a relatively short span of time — although some have lived for years, like physicist Stephen Hawking. For LaFollette, it was two years.
As witnessed throughout Often Awesome, the as-yet-incurable illness slowly takes away functions of the body. First, it was the use of one of LaFollette's feet, which at the start led to a misdiagnosis of a condition called foot drop. Episode 10 shows him losing the use of his hand. Though mentally aware all the while, his inability to control muscle movement also meant he could no longer even speak. LaFollette communicated for some time using a speech generation machine, which allows the eyes to type words and sentences on a screen. But for as long as he could find the words, LaFollette used them to help document what he was experiencing, unafraid of any question posed to him.
When asked if it was difficult to ask LaFollette questions about his mortality, Coon says, "At first it was. But when you understand the reality of the whole situation, especially since Tim understood it — and he wasn't afraid to answer those questions. Those are questions that are important to ask. He understood his mortality. He also understands the things he wants to do, the things he wants to get out there, the awareness. He thought it was important to ask those questions. It's not easy, asking, 'How much longer do you think you have to live?' It's not easy, especially as a friend."
While the series doesn't avoid honesty, in many ways, Often Awesome is also positive and inspiring. The show documents the intimate wedding of LaFollette and Szafranski. The series takes you to Scotland, where the two honeymooned, got hilariously drunk, and reconnected with close friends LaFollette made living in Stirling years before.
LaFollette looked at his situation as an adventure, and he did so often with a smile. In the series, LaFollette's sense of humor serves as a powerful tool in helping viewers get to know him. Several episodes begin with a jovial LaFollette, ridiculing the disease's impossible pronunciation.
But the most heartwarming moment of the web series occurs when the Often Awesome Army gets tattoos. The ink mementos all began with a swallow, a bird that was incorporated into the Often Awesome branding because of its significance to LaFollette and his mother, who, along with his grandmother, died from ALS in 1982. A sticker decorated with swallows was placed in his mother's song book by the folks at her Quaker meeting house after her passing, and so it became a symbol of solidarity for LaFollette.
Coon documented LaFollette's friends and family getting inked for their hero in the seventh episode of Often Awesome. But when scores more decided to get permanently marked as a fundraiser for LaFollette, Coon knew something so powerful deserved an extra episode. "They sold out two fundraisers, which was 48 slots each time," Coon says. "Some got swallows, some got rainbows, but they were all Tim tattoos." And Coon's show of solidarity? The Often Awesome logo of LaFollette and his cane, leaning fiercely across Coon's arm.
The tattooing is still going on. Greensboro's Legacy Irons Tattoo has donated time and talent for five years running, offering cheap swallow tats for 10 bucks a bird. Tattoo artist David Self, also a friend of LaFollette, has participated from the start. The most recent event was only last month. "I did 10 to 15 people that day — and that's a lot of birds," he says. "It's become this huge thing where people who don't necessarily even know Tim will hear about it from friends, then they'll recommend it to other friends because it's a good cause."
The tattoo event’s organizer Michael Sileno, also a friend of LaFollette, says its purpose is still being served. "People tell us stories all the time about people asking them about their tattoos and engaging them about the disease and Tim’s life," Sileno says. That’s why he keeps doing it. "It’s a beautiful event that we hope to continue annually."
Friends and family still hold other fundraisers, like dance parties, with all proceeds funding Often Awesome, which became a nonprofit two years ago. LaFollette’s sister Rachel LaFollette Jones, along with Sileno and friend Jay Parr, worked together to make it an official organization, with its mission mirroring the movement’s origins. "We’re trying to keep the spirit of what kept Often Awesome going beyond Tim himself," Jones says. "A part of that is trying to build awareness but doing so in way that’s truer to him — like the dance party and tattoo benefits — because those are not the typical ways that people think of raising awareness."
Another part of the nonprofit’s plan is to educate those in the home health care field who may only know ALS on the surface. It’s important to Jones that nurses know how to ask questions so they can better understand how their ALS patients want to be treated. Often Awesome also gives financial support when possible to places like LaFollette’s preferred donation recipient, the research organization ALS Therapy Development Institution.
Tim LaFollette would have been 35 years old on Oct. 11. It’s fitting that three years after his passing, a seemingly infinite stream of cold water went a ways in accomplishing his goal in drawing more attention to ALS.
Coon reckons the Ice Bucket Challenge blazed a trail in a way LaFollette would have loved. "It kicked the door in," he says. "It’s wonderful. I’m so happy that happened. It’s weird, because as much as Tim was trying to make awareness happen, we didn’t really get that exposure — but now after the Ice Bucket Challenge, people are now watching the series and commenting and sharing. It’s given it a second life.
"I wish Tim had been around to see that," Coon continues. "He would have been drinking it, dunking it — he would have been doing it all."