On the day director Clay Tweel screened his first cut of Gleason for its two central figures, former New Orleans Saints safety Steve Gleason and his wife, Michel Rae Varisco, a handful of the couple's closest confidants gathered in their living room. In addition to Tweel, Gleason and Varisco invited two of the film's producers, Seth Gordon and Kimi Culp, as well as Michel's father, Team Gleason Executive Director Paul Varisco. The mood was one of apprehension, anxiety, even panic.
"We were a wreck," Tweel says. "[Steve and Michel] started crying pretty heavily 10 seconds into the movie, and I was like, 'Oh, Jesus Christ, what have we done?'"
After the film ended, there was silence. For Michel, watching Gleason was an "out-of-body experience" — nerve-wracking but ultimately cathartic. Paul, on the other hand, was "taken aback" by its raw, unflinching portrait of two people — husband and wife, patient and caretaker — facing the rapid advance of amyotrophic lateral sclerosis (ALS), with which Gleason was diagnosed in 2011, while raising their young son, Rivers.
Tweel finally broke the ice, posing a simple question: "So, what do you think, Steve?"
Gleason, who has relied on assistive technology known as Augmentive/Alternative Communication (AAC) since losing his ability to speak, needed only four words.
"Dude, that was intense."
The moment was the culmination of a process that had begun in October 2010, when Gleason, exhibiting the first symptoms of ALS. He decided to document his experiences in a series of video diaries. In time, the project evolved into a record for Rivers, a fraught family album, a feature-length documentary and a Sundance Film Festival selection, but at the time no one knew principal shooting on Gleason had commenced — or that the tale of its making would be a compelling drama in its own right.
"It was one of the craziest, most intense things that Steve and I have ever done," Michel says. "To see our life in front of us in two hours."
When Gleason's "NFL brother" Scott Fujita returned to New Orleans in 2010 as a linebacker for the Cleveland Browns, he already was on tenterhooks. The prospect of returning to the Superdome in colors other than black and gold left him so emotional that he headed to Lucy's Retired Surfers Bar the night before the game, as he often had done during his four-year tenure with the Saints — only this timae he accidentally got drunk. No amount of alcohol could have prepared him, however, for Gleason's description of his recent medical woes, and Fujita, who'd lost an uncle to the disease 15 years prior, recognized the warning signs of ALS.
"I thought, 'Oh my God, this is exactly what my uncle was experiencing in the early stages," says Fujita, now one of Gleason's producers.
The two had met when Fujita joined the Saints in the spring of 2006, not long before Gleason's blocked punt in the team's home opener against the Atlanta Falcons made him a hero of the Who Dat Nation, and a symbol of the city's determination to come back from Hurricane Katrina and the levee failures. Fujita remembers Gleason's generosity, extending an invitation to see Dave Matthews Band at the New Orleans Jazz & Heritage Festival, and his idiosyncratic charm, which comes through clearly in Gleason.
"One of the very first days [of off-season training], we were in the weight room doing the usual meat-headed stuff, and there's a guy [on the field] with long stringy hair doing freakish yoga positions," Fujita says. "And the other guys told me, 'That's Steve Gleason. He's on his own program.' Steve's always marched to the beat of his own drum. Maybe, in reality, he's just got it all figured out."
But in January 2011, when Gleason called Fujita from San Francisco with the official diagnosis of ALS, the outlook was grim — so much so that Fujita and former Saints tight end Eric Johnson, both of whom reside in California, drove together to northern California to see Gleason, taking him on a sunrise hike.
"I remember breaking down, because I knew what he was about to go through," Fujita says. "I knew what Michel was about to go through as a spouse and a caregiver. It was really, really hard to swallow."
For Gleason and Michel, the diagnosis would turn out to be just the first of that year's life-changing developments. Six weeks later, Michel found out she was pregnant, and a man named Sean Pamphilon was about to enter their lives.
The Seattle-based documentarian made Run Ricky Run, a documentary about former Saints and Miami Dolphins star Ricky Williams in 2010 for ESPN Films' popular series 30 for 30. Pamphilon approached Gleason in the spring of 2011 about collaborating on a film and contributing to Gleason's growing video archive — which the father-to-be saw as a chance to communicate with his child before the worst ravages of ALS took hold.
It was Pamphilon, Tweel says, who captured one of Gleason's most devastating moments: the sight of Michel crying on the banks of Bayou St. John as Gleason struggles to complete the last leg of their miniature "Jazz Fest triathlon," four months after his diagnosis.
Though Gleason and Michel continued to film each other throughout the rest of 2011, setting up and shooting became more difficult as Gleason's illness progressed, and the amount of footage Pamphilon wanted to gather was too much for the couple to handle on their own. With Pamphilon splitting time between Seattle and New Orleans, the decision was made to bring on a part-time videographer. That summer, 22-year-old Ty Minton-Small, just out of college, responded to a Craigslist ad and prepared for his first assignment: recording the birth of Rivers Varisco Gleason.
"You gotta start somewhere," Minton-Small says. "When I went down there I was just young enough and just dumb enough that I didn't really think about it that much. I do remember thinking on the plane coming down, 'Oh, shit. I'm about to film a kid being born.'"
"I said, 'Steve, are you absolutely crazy? You've got to be out of your mind,'" Michel recalls. "I was going into labor and I was like, 'Ty, can you drive stick?' 'No.' 'Then clean the house!'" (One of the film's more light-hearted scenes features Michel driving herself to the hospital, with her husband in the passenger seat.)
The trio developed an immediate rapport, and despite Gleason's deteriorating health, there was much in life to enjoy and capture on film, from newborn Rivers to the launch of Team Gleason, a nonprofit dedicated to raising awareness of ALS and providing cutting-edge technology, equipment and services to those stricken with neuromuscular diseases.
"I would forget that Steve was even sick, at times. I think everybody would," Minton-Small says. "Our personalities just meshed perfectly. We trusted each other. We were like family."
Soon, though, the story of Gleason developed another twist, one that reshaped the film yet again. The following spring, Pamphilon left the project altogether, and Gleason described himself in a statement as "deflated and disappointed." Pamphilon had become, per the title of a 2012 GQ profile, "The Man in the Middle of Bountygate."
In March 2012, when the NFL announced that Saints Defensive Coordinator Gregg Williams and "between 22 and 27 defensive players" had established an improper program of "bounty" payments for injuring members of opposing teams, Pamphilon was sitting on explosive footage.
Two months earlier, while filming Gleason and Fujita at a team meeting on the eve of the Saints' playoff contest against the San Francisco 49ers, Pamphilon had caught Williams on tape urging his players to "kill the f—king head." In light of growing concerns over traumatic brain injuries in football, he concluded that the public should hear the audio.
That April, against Gleason's wishes, Pamphilon released a four-minute compilation of excerpts from his recording.
In opposing public statements, Gleason and Pamphilon disputed the terms of a four-page agreement reached at the beginning of their collaboration. Gleason claimed that the release of any footage related to the project required his "explicit approval." The filmmaker defended his actions, saying he'd followed the agreement, that a mutually agreed upon mediator had approved the release, and that it was the "right thing" to do. (Yahoo! Sports reported at the time that the contract did not specifically prohibit either Gleason or Pamphilon from releasing audio or video prior to the completion of the film.)
The relationship between filmmaker and subject was over.
"That issue caused a disconnect between Steve and [Pamphilon]," Paul Varisco says. "Steve felt that if he were going to go forward, he wanted to trust the filmmaker."
The fate of the project was unclear. David Lee, hired by Pamphilon earlier that year, texted Gleason saying he was still available to shoot. On Easter Sunday, Lee filmed a family barbecue; within weeks, Gleason asked him to record the placement of a feeding tube in his stomach, putting Lee into the kind of private, uncomfortable situation that distinguishes Gleason from similar documentaries.
"Early on, [Steve] told me he wanted to show everything," Lee says. "I felt guilty for a long time for some of the stuff I filmed."
Gleason's intimate, often harrowing depiction of its subjects' confrontation with ALS — and, at times, with each other — is the result of the kinship Lee and Minton-Small forged with Gleason, Michel and Rivers over the course of the next three years, during which the pair recorded more than 1,300 hours of footage.
"Ty and David more or less lived and traveled with us," Gleason wrote Gambit in an email interview "They did caretaking for me, and are like uncles to Rivers. ... Ultimately, they weren't outside filmmakers filming our family. We were a team, working together on a mutual project. Ty and David are family to us."
"They were Rivers' brothers, our sons, my husbands," Michel concurs. "They became everything to us. And because of the way it happened organically, I never really thought much about the cameras being on."
For Lee and Minton-Small, this closeness also presented a dilemma. As time passed and their affection for the Gleasons grew, the line between filmmaker and family members blurred. It became increasingly difficult and emotionally draining to treat their subjects as subjects.
One night, while traveling with Gleason and Michel in Peru, Lee declined to film the former Saints star being showered off after soiling himself, because he felt that doing so would have been "crossing some sort of line." Minton-Small also began to question whether it was appropriate to shoot footage of certain events.
"After his stem cell surgery, Steve woke up in the middle of the night and thought he was dying," Minton-Small remembers. "It was four in the morning, and he had somebody wake me up to film him, what he thought were his last moments, possibly. I had no idea what was going on. I thought, 'Why am I filming this? This does not feel right.'"
By the time Gleason entered post-production in March 2015, the combination of Gleason's worsening condition, the growing number of caretaking duties and the consistent presence of cameras had worn down this small "entourage," as Michel calls it, until the idea of continuing seemed untenable.
"There's a point where everyone said, 'Enough is enough,'" she says. "I remember specifically telling David, one time — I think Steve and I were having trouble with something, and I looked at him and said, 'I don't want this to be filmed!' He saw that point. I saw that point. We had enough footage. I think David really respected that.
"When I was done, I was done."
In the summer of 2013, Kimi Culp, Michel's closest friend from the University of Colorado at Boulder, visited the family on their annual vacation in Coeur d'Alene, Idaho. Lee and Minton-Small prepared to turn Gleason's diaries, along with their own footage, into a feature-length film. The idea was to do it on a shoestring, editing it themselves using money raised on the crowd-funding website Kickstarter. They'd even finished a "sizzle reel" to attract supporters. The garage, Culp remembers, was papered with sticky notes: on tables, on walls, on Lee and Minton-Small's computers. ("It was like A Beautiful Mind," Fujita says.) Culp, a longtime broadcast news producer, recognized the project's potential immediately.
"I knew in that moment, in that garage, that I had never seen anything like it," Culp says. "This was incredible."
As Lee and Minton-Small continued to collect new footage, Gleason and Michel entrusted Culp and Fujita with shepherding the film forward. In the coming months, the pair hashed out countless ideas over pizza and beer at Culp's Los Angeles home, scrawling each one on whiteboard to see what stuck. They even formed a production company, Dear Rivers Productions.
"We called them 'fireside chats,' because we'd do them at my house, by the fire, after the kids went to bed," Culp says.
In order for the project to attract investors and achieve the widest possible distribution, the film needed a director with extensive experience and prior credits, which function as currency in Hollywood. Culp and Fujita interviewed more than a dozen candidates. One stood out: Clay Tweel.
"What made Clay so attractive is he was the first one to say, 'I need to go get on a plane and explain to Steve and Michel why I need to make this film,'" Fujita says. "He wanted to make the pitch to them directly, and that carried a lot of weight."
Tweel, who said he was "wrecked" by Lee and Minton-Small's five-minute teaser trailer, flew to New Orleans, where Michel, during one of their first meetings, challenged him to a game of ping-pong. Having grown up around Muhammad Ali and his wife, Lonnie — Tweel's father was the late boxer's longtime attorney and friend — Tweel's passion for the project was, even then, quite personal.
"I saw a little bit of a parallel in Steve and Michel (and Ali and Lonnie)," Tweel says. "There's two guys who are sports heroes who are often carrying the burden of something larger than themselves, and they have these two amazing wives who support them and carry on their legacy."
For Lee and Minton-Small, who'd spent years caring for Gleason, playing with Rivers and helping Michel around the house, Gleason's gathering momentum came with mixed feelings. On the one hand, according to Minton-Small, it was exciting, after so many false starts, to see the film begin to crystallize. On the other, Lee says, reconciling with new voices and viewpoints after being so close to the project was challenging.
"It's complicated," he says. "I guess what I take away from it is, if it's good, you can start small and it'll get seen. That's probably the most encouraging thing. The hard thing is, you've been attached to something for so long, and then to invite a bunch of new people into it, it's hard to go through that. But it might be necessary."
The final push to finish Gleason began in earnest in the winter of 2015, with the goal of submitting the film to the 2016 Sundance Film Festival. The filmmakers had seven months to whittle down more than a thousand hours of footage into a coherent, feature-length narrative.
Lee and Minton-Small moved to Los Angeles to help Tweel with the editing process. The director conducted on-camera interviews with Fujita, Michel and other figures in the film, finding the major themes — marriage, fatherhood and the courage of ALS patients and their caretakers.
"We were working extreme hours, trying to stay on the aggressive schedule we had set out for ourselves," Tweel says. "You get burned out. You lose your perspective."
"They're the best people I know," says Minton-Small, who filmed Rivers and his friends on an iPhone as recently as two months ago. "If you imagine a sliding scale, I started out 100 percent filmmaker, coming down to document, and slowly that got chipped away. Now, I'm almost 100 percent their friend. ... The film stuff got to be so secondary and small compared to that. And we were going through an unimaginably difficult situation. Our roles as filmmakers just dwindled down."
In January, five years after Gleason's diagnosis, Gleason debuted at the Sundance Film Festival, receiving praise for the dauntless depiction of ALS that this tight-knit family of filmmakers and subjects had created during years in the trenches together. Open Road Films and Amazon signed deals for theatrical and streaming distribution; Michel, whose talent for drawing features prominently in the film, sold 10 prints at a post-premiere event, her first public showing of her art. In a sense, the response signaled an end of an extended period of tumult and the beginning of a new stage. Call it Gleason's unseen epilogue.
"I think the most frustrating part is that that time involved a lot of struggle, while things were declining for me physically," Gleason tells Gambit. "For example, losing the ability to talk then, learning how to type with my eyes, was a heartbreaking experience, not only for me and Michel. Ty and David lived that loss with us. Currently, I'm more or less stable, meaning I don't have many abilities to lose. Because of this stability, and an incredible care crew, I'm super active. I pick our son Rivers up from school or camp. I'm at all his activities. I enjoy our life. In so many ways, we've moved past that time of deep struggle."
Despite the twists and turns of its long gestation, Gleason is what Gleason envisioned in October 2010: a record, a document, of a family fighting through unimaginable circumstances to emerge, changed but closer than ever, on the other side. Only now, audiences will be able to see that experience through their eyes.
"Someone told me this one time, and I think it's the best thing I've heard," Michel says. "I hope that people get out of it what they need to get out of it. It makes me feel better for showing my privates to the world.
"And not just mine, ours. All of ours."