ABC News(NEW YORK) — Former New Orleans Saints defensive back Steve Gleason remembers the moment well when he was hailed as an NFL hero.
It was September 2006 and the Saints were back in the Superdome for the first time since Hurricane Katrina had ravaged the city.
Early in the game, Gleason blocked a punt, helping to clinch the win for his team and uplifting the community that had lost so much.
But in 2011, five years after that historic game, the once powerful NFL player had lost his ability to move, to talk and eventually, to breathe. Gleason was diagnosed with amyotrophic lateral sclerosis, or ALS. Often known as Lou Gehrig’s disease, it affects motor skills and has an average survival time of two to five years.
Then six weeks after the diagnosis, Gleason’s wife Michel Varisco found out she was pregnant with the couple’s son, Rivers.
“He had this terminal diagnosis, but we felt like we could walk on water,” Varisco told Good Morning America co-anchor Michael Strahan. “I just remember it was one of the happiest moments of both of our lives. Just knowing … we were going to have a baby, and this is going to happen.”
From that day forward, Steve Gleason made it his mission to record hundreds of videos for their unborn son, sharing life lessons he had learned along the way, while Gleason still had the ability to speak.
“I had some soaring and incredible moments on the football field, but I’ve had even more uplifting moments off the field since diagnosis,” he told Strahan.
In the end, Gleason recorded more than 1,300 hours of touching, heart-wrenching video diaries that are now part of a new documentary called Gleason, directed by Clay Tweel.
“I’ve tried to share not only my memories and my looks, but also my self-doubts and my shortcomings,” Gleason said.
“We could have made a movie that kind of glosses over the hard parts and just showed the hero parts and the easy parts,” Varisco added. “I feel like we wanted to show the truth. If we’re going to do this, we’re going to go all out and show the truth of our lives.”
day, Gleason relies on a ventilator to stay alive and a computer to speak. His wife said he researched a place where he can “voice bank” his actual speaking voice so he can sound more like himself when speaking though the computer.
“Then it goes to eye technology where he talks with his eyes but he’s talking a letter at a time,” Varisco said.
Gleason and his family’s next mission is the non-profit they created, with the help of some of his former teammates, to make sure all ALS patients have access to technology that gives them back their voices and improves their quality of life.
Last year, President Obama signed the Gleason Act, which would make this technology available through Medicare and Medicaid.
“Most of what ALS takes away technology can give back,” Gleason said.
For Team Gleason, just surviving isn’t enough. Their non-profit also provides patients with opportunities to travel and go on adventures – a reflection of the way Michel and Steve has always lived.
Gleason marked the one year anniversary of his diagnosis with a skydiving trip, followed by a trip to Machu Picchu. He could no longer walk by then, so his former Saints teammate Scott Fujita helped Gleason make the climb.
“I said, ‘like, 9,000 feet.’” Fujita said. “And he says, ‘yes.’ I said, ‘all right, don’t know how we’re going to do it, but it’s booked, we’re doing it.’”
“My NFL brother… told me after my diagnosis he would go with me to the ends of the Earth if necessary,” Gleason said. “He’s done that literally and figuratively.”
But the physical complications aside, the Gleason documentary focuses on Gleason being a father to his young son while struggling with ALS.
“I often feel inadequate as a father,” Gleason said. “Fortunately, because of this … technology and an equally bad— care crew, I’m able to be very involved in Rivers’ life… 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.”
“He’s got to try harder than any other dad because he can’t talk,” Varisco added. “Rivers is fast. He’s slow. I mean, it’s just difficult. It’s easy to quit, and Steve is not a quitter.”
Although the film is full of emotional moments, the family shares a lot of laughter too.
“You’ve got to do something,” Varisco said. “And we’re both funny. We’re funny people I think. So laughing has been one of the best solutions to get through this.”
“I’d like to say I’m a naturally funny dude,” Gleason continued. “But in reality, I think I just have no choice. Humor is definitely healing. So I think we’ve tried to use it that way.”
Gleason director Clay Tweel watched all 1,300 hours of Gleason’s videos to choose moments for the documentary, which opened at the 2016 Sundance Film Festival to critical acclaim and already has generated some Oscar buzz. Finding the balance between the humor and the raw, honest moments is something Tweel weaved together delicately, and not just for what Gleason was going through, but also his wife.
“I think the most surprising thing about making the film was the depths that we could explore Michel’s experience through all this,” Tweel said. “When I joined the project, I felt like the story was going to be about this guy who, through a set tragic set of circumstances, was finding his purpose and kind of this father and son story.”
“But what I really didn’t know was, and what nobody talked about, was Michel’s experience and the kind of complex series of emotions as a caretaker that she was going through, and how the disease affects everyone around Steve, as well,” he continued. “So I think that that, for me, took the movie to another level and allowed it to be not just a movie about ALS but, you know, is this a movie about family and about love and about the human spirit.”
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