It all started with what Steve Gleason called his "backup insurance plan."
Six months after receiving a devastating ALS diagnosis in which he was given two to five years to live, the former New Orleans Saints standout and folk hero who blocked a punt that was returned for a touchdown early in the Saints' post-Katrina return to the Superdome, heard news of a different type from a doctor. His wife, Michele, was pregnant.
From there, the insurance plan kicked in. Gleason, who never expected to adhere to the two-to-five plan, nevertheless saw the need to record tapes for his unborn child. He'd cover life, love, family, religion and everything in between. At best, it would give his child a chance to see dad as he once was. At worst, it would give his child a chance to see dad, period.
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With thousands of hours of footage, Team Gleason, as his support team and ALS charity, is known, decided to turn Steve's story into a full-length documentary featuring those personal video clips, interviews with friends and family and new footage shot by director Clay Tweel. What results is an unsentimental look at the ravages of disease and the hope and joy that can break through anyway.
Former NFL standout Scott Fujita is one of Gleason's best friends and served as a producer on Gleason. He was with Gleason the day after his diagnosis, when they climbed California's Twin Peaks together, as a sort of spiritual beginning of the journey on which Gleason was about to embark.
"I remember right where I was standing when the news came in," Fujita said via phone. "Until you hear those words, you don't think this can be it. He's too young, he's too healthy, this can't be real."
As the film shows, it didn't seem real for a while. Gleason was fine at first, virtually indistinguishable from the man who'd been diagnosed. But then slowly, as the video diaries show, Gleason's speech becomes slurred, first slightly and then to the point where he becomes hard, if not impossible, to understand. His easygoing movements subtly get replaced by a slapping gait. The color and liveliness drain from his face, as do the chiseled-on pounds he was carrying post-football. Eventually, we see Gleason confined to a wheelchair and fumbling with his only way of connecting with the outside world - a computer attached to his chair.
Showing this could have been an exercise in schmaltz. Football star loses control of body. Cue the tinkling piano, show a tearful interview, cut in a few lines about hope and close as Steve, Michele and young Rivers (who was four when the doc stopped filming) wheel into the sunset.
Tweel avoids all that, giving us more of a cinema verite look at the life of a family coping with ALS. That was the tone Fujita said they were aiming for.
"Nothing needs to be forced," he said. "Let's not suger coat, let's be honest, let's be real and show the extreme ups and extreme downs."
That truth is at the core of the movie. It's hopeful, it's depressing. It's joyous, it's miserable. It's high, it's low. None of it feels manufactured. When Gleason, speaking through his computer, talks about the terror he feels at night and then, in a scene a few minutes later, is asking questions to Pearl Jam's Eddie Vedder with that same voice (as Gleason grins as much as his ALS-affected smile will allow), it doesn't feel contrived. Nor do moments with Michele - the rock of the story. To the family she's every bit the megastar Scott was to New Orleans on that Monday night one decade ago. But Tweel refuses to make an airbrushed hero out of her. The cameras don't turn away when she has her doubts, frustrations, fears and laments or when she shares these with Steve.
It's the reality of living with with a debilitating disease. Every moment isn't hovering just over absolute bottom the same way every moment isn't a high in which ALS is out of sight and mind. Gleason shows the reality of life. You can't be a rock 24 hours a day.
Fujita said the footage could have told any of a hundred stories. Steve climbs Maachu Pichu, Steve rocks out backstage at a Pearl Jam concert, Steve goes back and see his statue unveiled in New Orleans. In the end, Tweel takes a long view of the journey, using unsparing footage. If you see it at the movies, bring a handkerchief. If you're watching at home (it'll be available on VOD after its theatrical run) make sure it's with someone you don't care about seeing you cry. (Translation: Don't watch on a second date.)
For those anti-NFL crusaders sharpening their pitchforks to use Gleason as a cause against football and CTE, you've got the wrong movie. Fujita dismissed any link between football and ALS out of hand. "There isn't any evidence right now," he says. Anyway, women make up 40% of ALS patients. Don't connect dots that aren't there.
Team Gleason is more interested in the future anyway.
"It's an exciting time to be in the ALS space," Fujita said. "From the Ice Bucket Challenge to the Stephen Hawking movie - people are shining a light on ALS and it advances the conversation. The more talk we have, the more people care and the more money we have for more research."
And Gleason, after a tracheotomy that will now allow him to live with ALS far longer than the initial death sentence he'd received, will be there to see it.
"ALS patients have been expected to fade away quietly and die and that's not okay," said Fujita. "It's encouraging and exciting to see Steve galvanizing."
Next month, the New Orleans Saints will celebrate the 10th anniversary of the greatest game in team history (yes, even greater then the Super Bowl win that would follow it). Fans will file past a statue of a horizontal player, laying himself out to get his hands on a kick that would lead to a touchdown and the start of a city's rejuvenation.
The real Steve Gleason will be there too, far different than he was on that night one decade ago, but filled with just as much hope. New Orleans is back. It's time for a new fight.