In 'Gleason,' filmmaker Clay Tweel follows an unintentional hero's journey

WASHINGTON - Clay Tweel is a collector of oddballs.

The Charlottesville, Virginia, native got his start in filmmaking as an assistant location manager for an obscure 2005 film, "Cry Wolf." Tweel then quickly shifted from indie horror to indie documentary, after that film's editor, Seth Gordon, lured him to Los Angeles to work crew on Gordon's feature directorial debut, a well-received documentary titled "The King of Kong: A Fistful of Quarters."

When Tweel decided to try his hand at directing, he followed that 2007 look at grown men obsessed with video games with a string of equally quirky films focusing on nerdy teenage magicians, a huckster for 3-D-printed guns and a spat between two North Carolina men over the ownership of an amputated human foot.

While in town for this year's AFI Docs film festival, where Tweel's latest film, "Gleason," was being shown, the 35-year-old director sat down for a chat about his proclivity for what he calls "vivid and deep character studies" of "misfits, outcasts and maligned subcultures." Tweel also spoke about how his new film - a profile of former New Orleans Saints player Steve Gleason - is both a continuation of, and a departure from, that path.

As followers of football drama might recall, Gleason is best known for blocking a punt in a 2006 game against the Atlanta Falcons, 13 months after Hurricane Katrina - a simple play that became symbolic of the city's recovery and that is immortalized in a bronze sculpture of Gleason outside the Superdome.

It sounds like a sports fairy tale, except that Gleason is no gridiron hero out of Central Casting.

The 5-foot-11 longhaired hippie-jock was in the habit of warming up before games by doing yoga in the middle of the stadium, and he was known for driving a pickup that ran on corn oil to and from a tiny apartment with no TV. With an introspective, philosophical bent, Gleason preferred traveling to club-crawling during the off-season. Tweel calls him a "warrior-poet."

In 2011, Gleason was diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig's disease, mere weeks before he and his wife learned that she was pregnant with their first child. As his symptoms worsened, Gleason decided to record a series of video journals for his unborn son, handing over the camera to a couple of young film students, Ty Minton-Small and David Lee, only when mobility issues prevented him from filming.

Four years later, after moving in with the Gleasons - acting as occasional caregivers for Steve and baby sitters for his son, Rivers - Minton-Small and Lee discovered that they were sitting on 1,300 hours of raw footage, including 200 hours of video journals, that they didn't know what to do with. They cut a short trailer from the footage and started shopping it around to documentarians. When Tweel's agent showed it to him in 2014, the filmmaker says, "I just kind of lost it."

"This movie's going to be so powerful," Tweel recalls thinking. He immediately jumped onto a plane to New Orleans to meet with the family. "I desperately wanted to tell this story," he says.

One thing Tweel didn't want to make was an infomercial. Although there is an aspect of self-promotion to "Gleason" - the film ends with a plug for Gleason's charitable foundation, which aims to provide communication technology and trips for ALS sufferers who cannot afford them - Tweel says his goal was something larger. "OK, inspirational movie," he says he thought as he waded through the tsunami of footage. "What else you got?"

That "else" turned out to be a story that follows what Tweel calls the "bones" of mythologist Joseph Campbell's Hero's Journey, incorporating elements of an ordinary man who is called to adventure and tested by adversity before surviving a death sentence and finding his way back to a semblance of a normal life again.

"I first saw how effective (the Hero's Journey) approach to narrative could be on 'Kong,' " says Tweel, who adds that he has used a similar structure on all of his previous films. "Regardless of the topic, I come at all the movies I make from a character perspective. The other themes - in this case, courage, survival in the face of adversity, the commonplace heroism of parenting - are always baked into a character's experience."

Gleason wants to remind viewers that the film is fact, not fiction. "This is our real life, not a mythical story to be structured," he wrote, in response to an emailed question about whether heroes are capable of seeing their own heroism. "Because I'm so active and involved in our son Rivers' life, and because I am able to stay productive and purposeful, in many ways I feel like we've conquered ALS. It's important to note that this has only been possible because I have a care crew and some bad a** technology." (Gleason types using a keyboard that responds to eye movements.)

"With the help of others, I'm just doing the best I can with the resources we have," he wrote. "We're imperfect people striving to find strength, solidarity and love, under extraordinary circumstances. While it may seem heroic, I believe the desire to live with purpose, despite the circumstances in one's life, is universal."

As with all of Tweel's films, "Gleason" defies expectations. "It would have been easy to play Gleason's story for sentimental uplift meant to inspire others to live life to its fullest," Variety wrote, "or as a feature-length fundraising ad for the Team Gleason charity assisting those living with ALS. 'Gleason' may accomplish both of those things anyway, but any such benefits come honestly and without manipulation by inviting viewers along on an intimate journey and holding nothing back."

For Gleason, holding nothing back means inviting the camera into his bedroom and bathroom - where his frank, occasionally funny and sometimes heartbreaking perspective on the indignities of his illness can be startling. More often, it means opening up about his fears for the future and shaken - but never broken - faith.

For Tweel, there were personal reasons Gleason's story affected him so powerfully. The director's older sister has multiple sclerosis, and his father, lawyer Ronald Tweel, was Muhammad Ali's attorney for 30 years, giving the filmmaker an insight into living with terminal illness.

"There are strong parallels between Steve Gleason's journey and that of Muhammad Ali and his struggle with Parkinson's. They are both, as far as I'm concerned, heroes."