Most people remember Steve Gleason as he once was, the Saints’ undersized safety and dynamic special teamer. The iconic moment associated with Gleason, memorialized in a statue outside the Super Dome in New Orleans, is his blocked punt against the Saints’ division rival, the Atlanta Falcons, in the first game back in New Orleans after Hurricane Katrina. That’s how Gleason still exists in the minds of many fans. In some ways, that’s who Gleason still is -- a larger-than-life figure, a hero, an inspiration.
Since then, Gleason has become someone entirely different -- still larger-than-life, still a hero, still an inspiration, but for different reasons.
The new film, Gleason, chronicles his life and his battle with amyotrophic lateral sclerosis, more commonly known as ALS or Lou Gehrig’s disease. It illuminates Gleason the football player and sheds light on Gleason as a man, a husband, a son, and most importantly, a father.
Early in the film, shortly after his diagnosis, Gleason says he won’t give in to the disease. It’s a sentiment echoed in the slogan for Team Gleason, his foundation, which is “No White Flags.”
“I have this diagnosis, and it’s not going to crush my life, even if it does crush my body,” he says. And it does crush his body.
Gleason, the player
Gleason retired from football in 2008. His ALS diagnosis came three years later. He’d always been a hard hitter. His former teammate Mike McKenzie described him as “a kamikaze.” When Gleason started having symptoms, the concerns were primarily that they could be lingering effects from his playing days — spinal damage or a brain injury — or something like ALS. It was ALS.
Fast forward a bit, and Gleason is well in the grips of the disease. He’s still walking, but it isn’t easy. He heads to midfield in the Super Dome to lead Saints fans and his former teammates in the “Who Dat” chant, accompanied by former teammate Will Smith and leaning heavily on Drew Brees for support. Gleason is overcome with emotion, as are his former teammates and fans.
By 2012 when the team dedicated a statue of his blocked punt outside the Super Dome, Gleason had lost the ability to speak or walk or even control his bowels. Gleason interprets this experience with perfect clarity.
“It’s an incredible example of polarities and dichotomies and juxtapositions that is my life,” he says.
Gleason, the person
For Gleason, coming to terms with battling ALS meant being confronted with not being able to do things that were once second nature. It happens very quickly for ALS patients.
They lose fine motor control. They begin to slur their speech. They develop muscle weakness. Walking becomes difficult. They’re confined to wheelchairs. Breathing becomes a challenge. The typical lifespan for a patient after an ALS diagnosis is two to five years. Their independence and their ability to connect and communicate with loved ones disintegrates rapidly.
The film details the founding of Team Gleason and the personal meaning the mission of the organization carries for Gleason and his wife, Michel. They focus on providing technology and life experiences for those suffering from ALS, and Gleason devotes his life to helping others with this disease be able to live as fully as he does.
We see Gleason, too, becoming more and more dependent on that technology, eventually losing the ability to speak and becoming reliant on a computer to speak for him.
The film allows us to see Gleason pursuing experimental treatments, trying to stave off the effects of this brutal disease. As he comes to terms, on camera, with the fact that his ability to speak is waning, his anguish is palpable. We see him suffer because of the ravages of ALS, and we see him suffer because of the impact his disease has on those he loves. It’s wrenching.
We also see Gleason choose to live. A doctor told him early on that people with ALS can outlive the expected lifespan of the diagnosis, but the effects of ALS typically force those who suffer from it to a point of realizing it’s no longer worth it. Gleason has not reached that point. He’s still fighting.
Gleason, the husband
Thousands of words could be devoted to Michel Varisco Gleason, Steve’s wife and primary caregiver. She would deserve every one, and more. This is her story too.
Caregivers are the unsung heroes in the world of terminal illness. For Michel, her life revolves around making sure Steve’s needs are met, as well as attending to the needs of their young son, Rivers.
Michel found out she was pregnant with Rivers about six weeks after Steve’s ALS diagnosis. Her part of the story is about a wife and a mother stretched too thin, trying to do her best for everyone she loves and succeeding, no matter how much it takes out of her. It’s the story of a woman who keeps going because she has no other option.
Michel and Steve are living the “for worse” part of their wedding vows. It wears on them both and their marriage. Steve is, through no fault of his own, fully dependent upon her, to a greater extent than even their young son is.
Her commitment is unwavering, her love for her husband is absolute, and her honesty about the experience is unparalleled.
“This is a motherfucker,” Michel says of caring for her husband through his battle with ALS.
Gleason, the son
Gleason’s relationship with his own father is strained. They seem more like acquaintances, wanting to love each other, but not quite knowing how to do so.
His parents had a difficult relationship, one described by Steve’s father as “dysfunctional” prior to their divorce. Gleason’s father said that Steve’s hard-hitting style of play on the football field was his way of finding catharsis from that.
Gleason’s father also blames Steve’s ALS on the way Gleason played.
From the time of his diagnosis, one of Gleason’s priorities is to heal any relationships in his life that need it, like his relationship with his father.
Despite the distance between them and Gleason’s increasing difficulties with communication, the film chronicles the beginning of the healing process between father and son.
“I think you did well,” his dad says. “I think you’ve taught Rivers more about love, gentleness, kindness at an early age than I even knew about.”
Gleason, the father
At its core, this is a film about fathers and sons. Gleason’s relationship with his own father, strained as it is, certainly paved the way for him to understand the type of father he wanted to be for his own son.
The film is centered around a collection of videos Steve began making for Rivers after his ALS diagnosis and before Rivers was born. Gleason is pragmatic about the fact that he may not be around to be a father to Rivers for long, and he wants to leave Rivers the very best of himself.
“Even if I’m not present physically,” Steve says before ALS robs him of the ability to speak and walk and breathe independently, “you’ll have this, and I feel so much better when I just sit down and share myself with you.”
Because that is, Steve says, what dads do, and he refuses to allow this disease to take that from him or from his son.
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This film is a raw, intimate look at the ways ALS ravages not just those who suffer from it, but also their caregivers and the loved ones around them. It’s an honest perspective on a man who wants to leave a legacy of love for others suffering from the disease, but most importantly for his wife and his young son.
Above all, this film, and Gleason’s life, is a story of triumph. Gleason will lose his battle with ALS. The disease has crushed his body, but he will not allow it to crush his life.