Former New Orleans Saints player Steve Gleason was never going to turn a film documenting his life with Lou Gehrig's disease into a sanitized, feel-good story of triumph in the face of tragedy.
Arguably more famous now for how he lives with ALS than he ever was for football, Gleason is more nuanced and genuine than that. And so is the documentary, "GLEASON," which premieres Saturday (1/23) at the Sundance Film Festival in Park City, Utah.
Viewers might find themselves outside of their comfort zones seeing Gleason's physical decline in graphic detail, and the profound sadness it causes loved ones who can't help but wish none of this had ever happened — proud as they are of the way Gleason has confronted his mortality with grace, humor and drive.
"I am not sure I will ever be completely comfortable with some of these intimate and raw moments being public," Gleason told The Associated Press in an interview this week as his New Orleans home. "At the same time, I believe that our greatest strength as humans is to share our weakness and vulnerability with each other."
Gleason's wife, Michel, said the film offers "a good picture of how brutal the disease is and how difficult it is for the person who has the disease and also the people all around.
"At the same time, there's lots of beauty in it and lots of friendship, family, love, laughter, happiness," she added.
A magnetic figure with a seemingly boundless zest for life and the charisma to connect with the masses, Gleason has galvanized politicians, athletes, rock stars, actors and others to mobilize against the disease, which attacks motor neurons, the cells that control muscles. He's tackled ambitious projects to improve the lives of fellow ALS patients and their families.
Yet Gleason does not view ALS, which stands for amyotrophic lateral sclerosis, as something that enabled him to achieve extraordinary things with a profound sense of purpose after his NFL playing days were over.
Using eye-tracking technology to type words spoken by a computer that sounds similar to the way he did when he could talk, he said: "I don't think this has made me better. My response is my way to cope."
Indeed, the film was a natural outgrowth of one of the first ideas Steve had when he learned he might not be around to help raise his only child, his son, Rivers, who is now 4 and was conceived shortly after his diagnosis. While he was still able to speak, Gleason began making 5-minute home videos in which he'd talk about his various life experiences and offer related advice. Michel helped with many of them, which they called, "300 seconds."
"That's where this all started," Michel Gleason said, adding that making the videos was therapeutic when the shock of the diagnosis was still fresh. "We needed a project at that time. … So Rivers is going to have 5 minutes with his dad — I don't know how many — tons. To me, that's the best part."
Excerpts of those videos, which director Clay Tweel and producer Seth Gordon found to be poignant and relatable, appear in the film.
"The home movies were really key at getting this really personal, intimate and vulnerable look at Steve and Michel and their family," Tweel said.
In all, directors worked with 1,300 hours of footage to create a 1 hour, 45 minute film, which also revisits Gleason's fearless presence on the football field.
Gleason played college football at Washington State and was with the Saints from 2000-07, wearing No. 37. He was a special teams' standout who blocked four punts, none more memorable than on Sept. 25, 2006, the night the Superdome reopened after Hurricane Katrina. The play resulted in the first touchdown in a victory over Atlanta and became a symbol of a devastated community's will to carry on.
Nearly a decade later, Gleason uses a motorized wheelchair, can barely crack a smile and relies on a system of surgically attached tubes to eat and breathe. Yet, since starting the ALS-focused Team Gleason foundation, he's traveled across continents, ascended mountains, addressed the United Nations, spearheaded changes to federal health care laws, promoted developing technologies and built an assisted-living center in New Orleans designed for people with ALS or multiple sclerosis.
The film features footage both of Gleason's travels and the often unglamorous, exhausting struggle of daily life, shot by a crew of cameramen trailing Gleason on a regular basis for about four years.
Michel Gleason jokes that she should have changed her outfit more. Her importance to the film grew as Tweel and Gordon came to appreciate the emotional strength and physical endurance she had to maintain to simultaneously care for a physically enfeebled husband and infant son. Tweel was particularly moved by a shot of Michel feeding both at the same time.
Michel has mastered many of the difficult routines that became necessary after her husband's diagnosis. She has been gratified by all her husband has accomplished even as his once formidable motor skills vanished. Yet she's unsure if her emotional pain will ever subside.
"Steve is the definition of: 'Through adversity, we find our heroes.' And I think he has taken more adversity than I think anyone has to go through and become an advocate," she said. "He's become an inspiration. He's become someone that people can look up to."
