In “Gleason,” the documentary about the former NFL hero who has ALS, his wife, Michel Varisco, emerges as the star. “I just want to be a real person,” she says.
Everyone talks about the bedroom scene.
The quiet, yet searing few minutes of the new documentary “Gleason” when former NFL player Steve Gleason and his wife, Michel Varisco, are having a tense moment typical in marriages.
For them, though, it is much more. Gleason, 39, has been immobilized by ALS in the years since his diagnosis in 2011. He communicates through a speech-generating device that tracks his eye movements.
Varisco is in her bed, trying to sleep, and Gleason, in his, needs to talk.
“I feel like you have no compassion towards me,” he says through the computer. “Everything is rushed. You always have somewhere else to be. You rush any care you give me. I don’t understand what I did to deserve it. Please tell me how I can improve.”
Varisco, who fell asleep while he was typing, stirs, then responds flatly: “Sorry. I don’t think it’s anything you can improve. I think it’s more how I can improve.”
Does she feel angry with him? he asks.
No, she says, she’s more angry with herself for how she feels.
“What can I do to be more important to you?” he asks.
“I don’t know.”
The scene is hard to watch for its intimacy. You feel like a voyeur.
But Varisco, 39, is glad to see it on the big screen. It shows what their life — and the lives of others with ALS and those who care for them — is made of.
“That is the most difficult part of this disease,” Varisco said last week, when she and the “Gleason” team were in Seattle for the film’s premiere. “I am a super-conversationalist, and Steve is as fast as anyone on that tablet.
“But it’s not actual conversations,” she continued. “It takes forever. And it’s super hard on a relationship because communication is so important.”
They have known each other since 2004, when they were introduced through a mutual friend. (“Steve and I met in a strip club …,” she joked.) They married in 2008.
“When he showed up, he had a cute little Peter Pan smile,” she said. “He was full of personality and life. And it’s kind of how I was, too. We just clicked.”
Gleason, a football star at Washington State University, became a hero in 2006 when, as a player for the New Orleans Saints, he blocked a punt in a game against the Atlanta Falcons. The play re-energized a city still reeling from Hurricane Katrina.
Gleason retired in 2007 and four years later was diagnosed with ALS. Just weeks after his diagnosis, Varisco found out she was pregnant.
Knowing that time was of the essence, Gleason started making video journals — love letters, really — for their unborn child. He recorded himself reading children’s books, talking about religion, love and even how to build a campfire.
When his disease progressed, the couple hired cameramen Ty Minton-Small and David Lee to pick up the slack. The two lived with the family for five years.
In that time, they collected 1,300 hours of film that was structured and edited by director Clay Tweel.
The film captures doctor’s appointments; the growth of the couple’s son, Rivers; Gleason’s tracheotomy and stem-cell surgeries; meetings of the couple’s foundation, Team Gleason; and one difficult scene when Gleason’s fundamentalist father, Michael, brings him to a healer.
“I just didn’t think about the camera,” Varisco said. “And that’s a huge reason why this film is so honest and raw and real. If you think this is going to be the future of it, that it was going to be this big documentary, it would be hard not to be staged.”
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While the film is named for her husband, it is Varisco who emerges as a star.
At the start, she is Gleason’s spirited wife, who becomes his partner in confronting the disease.
By the time their son is born (he’s now 4), Varisco is straddling care for a growing infant with that of a husband whose skills diminish almost daily.
In one scene, Varisco is holding the baby while feeding Gleason. In another, 1-year-old Rivers ravages his birthday cake in a highchair while his father watches from his wheelchair.
“So many people have been there, or are going to be there,” Varisco said. “We all have parents. Lots of us have siblings. And people get sick. And I think that’s one of the things that people can really relate to in this movie: the role of the caregiver.”
In the film, Varisco’s soulful brown eyes reveal everything: the worry, the frustration, the tiredness. She bites her lip, she cries. You see her wearing down, and fighting it.
It only got worse after filming ended, she said.
“Physically and mentally, it got to be too much,” she said. “I had all this patience in the world in the movie. But I couldn’t sustain it. I struggled to feel like myself.”
She went to therapy and learned that it was OK to need help (which the Gleasons now have from new caregivers) and to break.
Still, she said, “It’s hard to come to these things and be adored for my strength because, you know, I broke. But I am getting back.”
Varisco is a guy’s girl — strong, salty and up for anything — who grew up with two brothers and didn’t really have a life plan.
“I always just wanted to live a happy life,” she said. “But also, I love traveling and I love the stories you get from traveling.
“And now, through Steve, I have plenty of stories. But I have experienced more pain and heartbreak and loss than I ever had. And so I guess in a way it has made me stronger.”
It has also made her an artist. To pass time during the doctors’ appointments and hospital stays, Varisco started creating elaborate doodles. She now sells them on her website.
She’s proud of the impact the movie has made, not only for those who have ALS, but for those who have no idea what it’s like to love someone who is sick.
And she is proud of what the film captures — even the quiet, tense moments in the bedroom.
“I don’t want to be a devil,” Varisco says in the movie. “But I don’t want to be a saint, either. I just want to be a real person.”
In one of his video diaries, her husband makes clear she is that and more.
“You have a mom who is incredible,” Gleason says to his son. “Incredible. And we are lucky to have her.”