My number one focus and purpose is to share with you who I am, and to give you as much of myself as I possibly can, while I can. And I’m excited.”As the documentary “Gleason” opens, retired professional football player Steve Gleason leans toward the camera and speaks to his then-unborn child. His wife, Michel Rae Varisco, is pregnant. That news has come just six weeks after doctors diagnosed Gleason with amyotrophic lateral sclerosis (ALS). Also known as Lou Gehrig’s disease, ALS is a degenerative disorder that leads to paralysis but typically leaves the mind intact.
Now, before his health deteriorates, the former New Orleans Saint is recording video diaries for his child.
For the next 110 minutes, filmmakers follow Gleason, Varisco and their family through unbelievably heartbreaking physical and emotional developments triggered by his disease—and through unexpectedly hopeful moments of love, light and laughter.
Carmel Valley resident Scott Fujita, Gleason’s close friend and former teammate, worked on the “Gleason” production team. The Southern California native played football in Kansas City and Dallas before signing with the Saints, and he was on the field for the team’s first game back in the Louisiana Superdome after Hurricane Katrina. Early in that 2006 matchup, Fujita forced a fumble by sacking Atlanta Falcons quarterback Michael Vick. On the next play, Steve Gleason blocked a punt attempt that was recovered in the end zone for a touchdown. The Saints went on to beat their division rivals by 20 points.
“It was the most electrical moment in my sports career,” Fujita says of the play, which is often linked with the region’s post-storm rebirth. “We’re all guilty of overstating the importance of football, but that was one of those moments that was so much bigger than just the game.”
Fujita, who earned a Super Bowl ring with the 2009 Saints, remained close to his former teammate after Gleason’s 2008 NFL retirement. When Gleason started experiencing unexplained muscle spasms in 2010, he mentioned the symptoms to Fujita.
“Steve was young. Never in my wildest dreams did I think it could be ALS. But, it sound-ed eerily similar to my uncle’s experience about 15 years earlier, when he learned that he had ALS,” Fujita says. “Steve’s 2011 diagnosis was devastating, but he immediately decided that he wouldn’t let this disease take over his life.”
After recording video journals for nearly two years, Steve and Michel decided to hand the footage off to filmmakers. Fujita and some friends started outlining movie ideas in 2013, and they saw “Gleason” through to its 2016 Sundance Film Festival debut. Amazon and Open Road Films then partnered on the movie’s wider release.
Director Clay Tweel and his team edited more than 1,300 hours of footage to create the documentary, including scenes captured by filmmakers who lived with Michel and Steve after he could no longer hold a camera. The film features tender moments, such as the birth of their son, Rivers, and Gleason’s fatherly lessons on relationships, spirituality and adventure. It also documents the professional athlete’s despair over his physical decline, and Varisco’s struggles as a caregiver, partner and parent.
“Steve and Michel said, ‘If we’re going to do this, we need to be real and honest about the emotional highs and lows,’” says Fujita. “The footage is intimate, raw and very in the moment.”
This summer, Steve and Michel stayed in Carmel Valley between film premieres in Los Angeles, San Francisco and Seattle. It was their first visit to the Fujita home since early 2011, shortly after Gleason’s ALS diagnosis.
“To have Rivers swimming with my girls, while Steve and I watched, was really special,” Fujita says. “We drank beer like we used to—but with me pouring beer down his feeding tube—and after we put the kids to bed, we’d all stay up late and tell stories…I didn’t know this would ever be possible.”
Today, Gleason breathes with a ventilator and communicates with eye-tracking technology. And he approaches life with the same determination and lightheartedness displayed throughout the documentary. In August, he addressed concertgoers while on stage with Pearl Jam at Chicago’s Wrigley Field. On Twitter, he shares personal perspective, talks football and frequently cracks jokes. Gleason works closely with researchers at Microsoft to improve the tools available to ALS patients, and he remains active in Team Gleason, a nonprofit that raises awareness and helps individuals with ALS live more fully and independently. A team of caregivers assists Gleason and his family with day-to-day needs, and his physical condition has essentially plateaued.
“The digression is mostly over. This is what life is going to be like, and now it’s about getting accustomed to that,” Fujita says.
He recalls a scene in “Gleason,” where Steve and his cousin discuss how old a child must be to have meaningful conversations with a parent. As Gleason imagines his own future, he fears that he’ll never have significant talks with his own child. “But now, Steve is having those real conversations. He’s picking up Rivers from school, asking him how his day was, and coaching him up in baseball and soccer. I don’t think any of us could have predicted those things,” Fujita says. “Being an active participant in fathering Rivers is a big reason why Steve is happy and feeling like he’s beating this thing.”
To support Team Gleason, and to learn more about the organization’s initiatives, visit www.teamgleason. org. “Gleason” will be available on DVD on November 1, 2016, and the Amazon Prime Video release follows on December 29, 2016.