The new documentary “Gleason” could be summed up as the story of a man dying.
Director Clay Tweel prefers to see it as the story of a man living — a man living to his utmost despite a disease that has robbed him of control over his body.
Two years ago Tweel was sent a video of scenes from the life of Steve Gleason, the former New Orleans Saints player who in 2011 was diagnosed with ALS, the invariably fatal neurological condition also known as Lou Gehrig’s disease.
The footage came from David Lee and Ty Minton-Small, New Orleans filmmakers who for more than three years had been recording on a day-to-day basis how Gleason and his wife, Michel, were battling the disease.
It’s incredibly intimate, personal material. The Gleasons were open about their fears, hopes and frustrations. We see the couple arguing. We see Gleason in both emotional and physical pain.
Lee and Minton-Small had more than 1,200 hours of footage but were struggling with how to organize it into a coherent feature film. They hoped that Tweel — the director of the documentaries “The King of Kong: A Fistful of Quarters” (about arcade video gamers on a quest to play a perfect game of “Donkey Kong”) and “Finders Keepers” (a man goes to court to recover his mummified, amputated leg) — might provide answers.
“I immediately fell in love with what they were doing, the rawness and intensity with which they wanted to tell the story,” Tweel recalled in a phone conversation from his Los Angeles home. “I realized this film could be heart-wrenching and deeply moving. So I jumped on a plane and flew down to New Orleans to meet the family.”
The documentary arrives in Kansas City area theaters on Friday.
The project had started with Gleason’s desire to leave a video testament for his unborn son (Michel discovered she was pregnant just a few weeks after Steve’s diagnosis).
But it had grown from one man’s personal blog to an epic emotional and physical journey. Even as the disease ate away at the former athlete’s ability to walk and speak, Gleason was spearheading a foundation to use modern technology to improve the lives of those who suffer from amyotrophic lateral sclerosis.
His Team Gleason was instrumental in the passage of the Steve Gleason Act, a federal law that requires Medicare to provide ALS sufferers (and others with communication disabilities) with speech generating devices — computers that allow them to converse electronically when their own vocal cords will no longer cooperate.
In addition to editing and organizing the existing footage, Tweel filmed interviews with Gleason, Michel, Gleason’s father, Mike (a late-in-life religious convert whose theological views often are in conflict with those of his son and daughter-in-law), and family friends.
Tweel realized early on that it would be impossible to maintain anything like journalistic objectivity.
“The material is so raw there had to be a great deal of trust among all of us. It’s really a family affair. Those of us who came in from Hollywood felt a huge responsibility to present this guy’s legacy as honestly as we could. This is his effort to show his son” — Rivers Gleason, who was born in 2012 — “who he is. I don’t want to be the guy to screw that up.”
Initially, Tweel said, he felt pressure to make the film quickly so that Steve Gleason would be alive to experience its release and reception.
“From the very first discussions things were very much up in the air about how long Steve would live. It’s a weird, morbid thought to have: How do you tell the story of a man with a terminal illness who hasn’t died yet?”
Tweel half assumed that the film would end with Steve Gleason’s funeral. But in fact Gleason is still alive and doing better than he has in years, thanks to an operation — a tracheotomy — that has restored his ability to breathe.
“When I started to see the shape of the story unfold I realized we might have a legitimately upbeat ending,” Tweel said.
“Yes, the film chronicles what Steve has lost physically, his motor functions. But at the same time he has reconciled with his father, Michel is developing as an artist and finding her own identity, and together they’re raising this beautiful little boy. … These things were really hopeful and honest.
“What the story shows is that tragedy hits most of us at some point, but if you continue to maintain hope, literally putting one foot in front of another, you can make it through.
“The film is about what it means to be human. Triumph and sadness are sometimes in very close proximity.”
ALS sufferers who undergo tracheotomy surgery have good survival chances if they can avoid infections.
“Steve could be around for another 15 to 20 years,” Tweel said. “But there’s always the chance that he could die next week from bronchitis.
“So he lives his life to the fullest. Steve picks up his son almost every day from school and goes to all his sports games. Michel just sent me a video of Rivers hitting his first home run.”
Far from dreading that each phone call from New Orleans will bring bad news, Tweel says he’s eager and excited when the Gleasons’ number pops up on his caller ID.
“I look forward to getting the latest news. Steve has been doing so well, better than he has in three years, especially emotionally.
“As he likes to say, ‘It’s not gonna be easy, but it’s gonna be awesome.’ ”
Read more of Robert W. Butler’s reviews at butlerscinemascene.com.