“I have never wanted to be a saint,” Michel Rae Varisco professes near the end of Gleason, Clay Tweel’s unflinching documentary about New Orleans Saints hero Steve Gleason’s battle with ALS. Varisco, Gleason’s wife and the MVP of the film, doesn’t “want to be a devil or a dickface.” She just wants to be “a real person.”
Gleason, which arrives today in select theaters, tracks not only the physical deterioration of a man, but the realities of a marriage in times of crisis. The couple wed in 2008, two years after Gleason’s momentous punt block in the Saints’ first game back in the Superdome after Hurricane Katrina. The play, an improbable dive from an undersize special teams player, came to symbolize — and galvanize — New Orleans’s post-Katrina recovery, so much so that it was immortalized in a statue titled Rebirth years after his retirement in 2008. Gleason was diagnosed with ALS in 2011, and learned that Varisco was pregnant with their first child six weeks later. He began recording video journals of himself, and later brought on two filmmakers, David Lee and Ty Minton-Small, to follow his and Varisco’s every move, intending to create a lasting document for his son. Gleason is the result, splicing together 1,300 hours of footage shot over four years.
You go into this sort of film expecting hagiography, a deification of everyone involved. Gleason manages to instill those triumph-of-the-human-spirit feelings despite, or maybe because of, the unvarnished and uncomfortable look into the life of Gleason and those around him. And no one is around him more than Varisco, who indeed comes off as a real person.
For starters, she cusses a lot. In one brutal scene, Gleason’s fundamentalist father, Mike, convinces the couple to see a faith healer. Upon being “healed,” Gleason attempts to run, and promptly falls flat on his face. “This is bullshit,” Varisco tells Mike. It’s a heartbreaking sight; the emotional strain of Gleason’s diagnosis on the family is palpable. Mike, we learn, was a largely absent father, and has regrets about the way he handled parenthood. Gleason and Varisco strive to avoid the same mistakes.
Less than a year into Gleason’s battle with ALS, Varisco gives birth to the couple’s son, Rivers. She spends the majority of the film taking care of both Gleason and Rivers, in addition to working for their nascent foundation, Team Gleason. She is exhausted. “This whole thing is a huge mind fuck,” Varisco later admits. All these responsibilities take a toll, and Tweel doesn’t shy away from showing the consequences. Gleason and Varisco’s marriage isn’t perfect; late in the film, when the ALS has deeply affected Gleason’s movement and he communicates solely through a speech-generating device, we see an argument play out in real time. “I feel like you have no compassion toward me,” Gleason grouses, as Varisco looks down at her computer. “Everything is rushed. … You walked by me 10 times tonight while Rivers was on my lap. I tried to get your attention. You didn’t even look at me,” he says. Varisco is angry with herself, seemingly full of guilt, but she doesn’t know what Gleason can do to “be more important” to her. Varisco has devoted her life to Gleason, feeding him, chauffeuring him, making public appearances with him. But the growing chasm between Gleason the symbol and Gleason the person — his life, he says, has become “an incredible example of polarities and dichotomies and juxtapositions” — becomes an overarching tug-of-war in their marriage.
The argument is jarring, almost like an exchange to which we weren’t supposed to be privy. “If that scene isn’t in, the movie shouldn’t be made,” Varisco said in an interview with The MMQB’s Peter King. “If you want the real-life story of a family living with ALS, that’s the kind of scene that has to be included.”
Gleason is full of these scenes, and they serve as the backdrop for the film’s moments of uplift. When President Obama signs the Steve Gleason Act into law, making speech-generating devices available for ALS patients under Medicare and Medicaid, their sense of victory feels earned. As Gleason’s condition worsens, his fame grows, and Varisco remains a constant, steadying presence throughout. She’s there in the frame: cursing, drawing, caregiving. She’s always there.