Football star with ALS finds a new purpose

“Ultimately, if the audience walks away from this film with anything, my hope is they understand that in the midst of our adversity, we will find our greatest opportunities,” Gleason, who now communicates through a machine he operates with his eyes, said by email. “Everyone faces tragedy and adversity, but most often, that is where we find our power and meaning.”

“Gleason,” which has already soaked all the Kleenex along the festival circuit, is a mixture of video journals Gleason shot for his son while he still had the power of speech, and documentary footage. His body disintegrates heartbreakingly fast, just as he, undaunted, embarks on a new mission to raise attention for ALS.

Edited together from 1,300 hours of footage by director Clay Tweel, “Gleason” is a family portrait that doesn’t shy away from the disease’s day-to-day hardships, the Gleasons’ naked emotions or even Rivers’ birth.

“This is purely just raw, real emotion,” says Michel Varisco Gleason, speaking by phone. “It’s crazy that it’s out there, but it is.”

The film packs such a wallop partly because the Gleasons are themselves so unsentimental. They’re free spirits and adventurers, more likely to use a new wheelchair to spin around a toddler than lament their unfair fate. But both Steve and Michel acknowledge being nervous about releasing such an intimate film — “the inside of our life,” Michel calls it.

“Honestly, I am not sure I will ever be completely comfortable with some of these intimate and raw moments being public,” says Gleason. “At the same time, I believe that our greatest strength as humans is to share our weakness and vulnerability with each other.”

Gleason played for seven years in the NFL, where he was most famous for a cathartic, city-rallying punt block in the early minutes of the Saints’ first Superdome game after Hurricane Katrina.

The team has supported Gleason. A statue of his play now sits outside the stadium, and Saints quarterback Drew Brees is a co-executive producer of the documentary. But there have been complications.

The film was initially directed by Sean Pamphilon, who during filming in the Saints locker room captured a coach urging players to injure the opponent’s star running back in the head. Gleason opposed releasing the tape, but Pamphilon, feeling a responsibility, eventually went public with it, leading to the “Bountygate” scandal .

The causes of ALS remain largely mysterious, though some studies have suggested repetitive head trauma may be connected. Gleason, however, has not blamed football for his illness and he declined to further discuss any connection.

“I was hoping that you didn’t walk away from the movie thinking it was a movie about ALS or football,” says Tweel. “The testing of the boundaries of love and the father and son story is really what I tried to narrow the focus of the movie on.”

Gleason is instead absorbed with improving the lives of ALS patients and finding a cure. The slogan of his nonprofit foundation, Team Gleason , is “No White Flags.” He’s raised money to send ALS patients on international adventures and last year successfully lobbied Congress to pass the Steve Gleason Act, making speech-generating technology for ALS patients covered through Medicare and Medicaid.

Gleason has already lived longer than doctors expected. A crossroads came when Gleason opted for a tracheostomy, which allowed him to breathe with a ventilator. His motivation has always foremost been to be around for the now five-year-old Rivers.

“I often feel inadequate as a father, and I’m relentlessly pursuing ways to be a better dad. Fortunately, because of this badass Technology and a supportive care crew, I’m able to be very involved in Rivers life,” says Gleason. “I pick up Rivers every day from school, I’m at all of his practices. I get to help get him ready for bed at night.”

“It’s a difficult situation and we still have to deal with the brutality of the disease every day,” says Michel. “This is just the next chapter. We’re doing our best just to deal with life as it is now. There’s definitely lots of bad moments and great moments, just like everybody else’s life.”

The film brings with it its own pains and triumphs. Michel estimated that she’s seen it 15 times but hearing her husband’s natural voice at the start of the film “always gets me.” Still, they’re looking forward to sharing their story.

“We’re going on a new ride,” says Michel. “We used to like to adventure travel. This is like emotional adventure. We’ll see where it takes us.”