The NFL these days has been a frequent source of controversy, most recently over allegations that it engaged in the falsification of concussion research.
But individual player stories from the league can be inspiring. And perhaps none is more heartening — not to mention rich and textured — than that of Steve Gleason, who for the last five years has been battling ALS.
The former New Orleans Saints star, 39, is the subject of “Gleason,” a film by the documentary veteran Clay Tweel that has been emptying packs of tissues on the film-festival circuit, ahead of its release this summer by Amazon and “Spotlight” distributor Open Road. At a moment when many sports-centric tales are focused on off-field misdeeds or institutional delinquency, “Gleason” offers the opposite: a man of uncommon spiritual and psychological depth.
“Watching Steve one becomes aware of, and OK with, the comedy and tragedy that is life,” said Tweel in an interview. “He’s tapped into what allows us to laugh in the face of fear, what allows us to confront impossible tasks. It takes Steve an hour-and-a-half to get out of bed in the morning. But he continues to live anyway. And his life means something larger than himself.”
Tweel didn’t know much about Gleason until he was contacted as part of a filmmaker open call of sorts about two years ago. A retired NFL player was looking for an experienced documentary helmer to shape hundreds of hours of footage into a feature. Might Tweel be interested in applying? He boarded a plane for New Orleans, where Gleason lives.
What he found there was remarkable. Gleason received his diagnosis in 2011. But rather than shrink into self-pity or passively accept a pale future, he took a different approach. In fact, he took a cinematic approach.
Gleason and his wife, Michel, were expecting a child. So with the help of two young local filmmakers, the former defensive back and special-teams player — he is a Saints legend for blocking a punt in a post-Katrina game — began documenting his thoughts and pre-ALS life on camera, all for a son he realized would know him very differently.
Nestled in the footage were incredibly intimate moments with Michel, with Gleason’s complicated father, with his caretaker and, eventually, with his newborn son Rivers. Gleason would frequently offer direct confessionals to the camera: raw feelings as he stares into the darkness of a disease slowly tightening its grip on him. It’s a portrait of encroaching mortality rarely captured on film.
Gleason would also address these fears — and hopes — to his child.
“I’ve been thinking about fathers and sons a lot since you’ve been born,” he tells Rivers via the camera at one moment, as his physical limitations are growing. “And at this point it looks like we’re not going to have the normal father-son relationship. I can’t go out and play catch with you. I can’t throw you batting practice. But I’m going to do everything I can to be a good father, to give you what a son needs from his father. I’m gonna be around, buddy. It’s not gonna be easy, but it’s gonna be awesome.”
The result is a highly nuanced movie: a meditation on fathers and sons, on faith and doubt — on, really, why we’re all here in the first place.
That was not always easy to locate.
Tweel combed through 1,300 hours of footage shot by the filmmakers, David Lee and Ty Minton-Small. His quest kept shifting.
“My first instinct was that the movie would be about a guy searching for purpose in his life, and through this tragic diagnosis was able to find himself,” Tweel said. “But I didn’t understand the intergenerational father-son story. I didn’t understand the husband-and-wife story. There were so many more layers going on.”
Indeed, Michel and how she copes with her newfound burden is a powerful aspect of the film. So too is the story of Gleason’s father, a man of devout religious faith who can seem insensitive to what his son needs to hear.
But it is Gleason’s relationship with his young boy that forms the movie’s emotional spine.
These include some joyous moments, as when Rivers falls contentedly asleep in his father’s wheelchair or is gleefully sped around a field in it, unaware this is anything but the most normal child-parent interaction.
And there are moments more poignant, such as the scene at Rivers’ first birthday party when within the frame both father and son can be seen needing assistance eating birthday cake, two poles of life in pointed contrast.
At the film’s heart is a man trying to wrestle with the loss of basic human capabilities even as he’s also becoming someone more resilient and tough — a resilience and toughness his athlete life only slightly prepared him for. Becoming a hero, the movie suggests, is not the stuff of capes and comic books but a messy, painful affair. In one scene, Gleason returns home from a statue dedication in front of the Superdome only to suffer an embarrassing loss of body control.
Asked via email about how he has experienced this odyssey, Gleason, who currently communicates via a machine he manipulates with his eyes, offered a typically thoughtful response.
“While the last 5 years have been difficult, they have also been equally spectacular. The difficulties of life help unravel the richness that is so rewarding. After a certain point, I think we understood that the message and power of these [video] journals could have an impact on the public,” he wrote.
But he also cautioned against overemphasizing the importance of the movie. Asked what on-screen images he’d like to be remembered for, he said:
“I don’t plan to be remembered for any on-screen images. I plan to be a great father and husband. I plan to continue doing the activities, however difficult, that bring me joy and invigorate me for decades to come, while the film is collecting dust.”
Gleason has reached out beyond his family and become an activist, starting a foundation with Michel that helps ALS patients; the organization seeks to improve patients’ quality of life, whether with new technology or a long-desired trip to Europe. He also helped get a law passed — known as the Steve Gleason Act — that makes communications machines for ALS patients far more accessible to ordinary people.
The man documenting it all brings an unlikely background to the story. Tweel’s previous movies have covered a diverse set of topics, including the nascent 3-D printing industry (“Print the Legend”) and the offbeat battle over a severed leg (“Finders Keepers”). But many of his films share a key trait: finding humanity and wisdom in unexpected places.
“To me there’s a commonality in all these films — why do people do what they do, even when it’s unexpected? What makes them tick?” he said. “If there’s an openness to characters, it allows you to accept human truths from them, to see what they’re doing and relate.”
That thought is encapsulated by Gleason in the film. “People will say, ‘Oh, it’s a sad, tragic story,’” he says, reflecting on his life. “And it is sad. But it’s not all sad. I think there’s more in my future than in my past; I believe my future is bigger than my past. And that’s uplifting.”