Steve Gleason Explains How Director Clay Tweel Was Chosen to Tell His Story

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Steve Gleason

“It takes an incredible commitment to live triumphantly with ALS. We wanted to find a director who could sift through all of the footage to capture the sincerity and reality,” Gleason told THR at a special screening of 'Gleason' at WME.

“If you don't have tissues, you should get some,” Rob Reiner said as he introduced a special screening of the documentary Gleason on Monday at the William Morris Endeavor screening room in Beverly Hills.

Reiner was right, it turned out, as the theater was a cacophony of sniffles while the audience watched Clay Tweel's film about the life of ALS sufferer and former NFL player Steve Gleason, his wife, Michel Varisco, and their infant son, Rivers.

Starting out as a video journal Gleason intended only for the eyes of his then-unborn son, the project soon turned into something much bigger, with filmmakers Ty Minton-Small and David Lee shooting footage before Tweel came on board. The film is a testament to Tweel’s prowess, in that he sifted through over 1,200 hours of existing footage before shaping the story and shooting additional film. The resulting documentary was snapped up by Amazon when it screened at Sundance, and it since has been longlisted by the Academy.

After the screening, Gleason, Varisco and Tweel attended a Q&A hosted by Pearl Jam guitarist Mike McCready, who, as a longtime friend of Gleason’s, also features in the film.

Tweel explained the process of organizing the footage into a story.

“I used something of a Joseph Campbell’s 'Hero’s Journey’ to plot out the direction of the film,” he said. “I think that adds to the depth you can bring to a film and documentary form, as well. You get people to connect to the characters and care about them.” Referring to the storytelling technique, he added, “They’re not plastic tropes, they work. You can learn them, understand them and modify them for your own purposes.”

Among the attendees posing questions at the Q&A was former NFL player Akbar Gbaja-Biamila, who thanked the participants for making the documentary and unabashedly admitted, “The film just broke me down.”

The harrowing but ultimately uplifting film contains many moments of extremely revealing and intimate struggle. As Gleason himself put it, “Primarily, it was imperative to find a director who would incorporate into one movie absolutely every single last scene of me pooping my pants,” to much laughter from the audience.

“We wanted to bring in a director who we could trust with a very personal and intimate project,” he added. “A couple of years ago, when we began to look for someone to turn the footage into a film, we wanted to find a director who could sift through all of it [and] capture the sincerity and reality of what we started.”

“It was a huge responsibility,” said Tweel. “It’s not something I took lightly at all. It’s someone’s legacy, and you’re trying to craft that into a film story. What’s unique about both of them is, they’re able to say what they’re feeling when they’re feeling it, and that’s very rare.”

Robbed of his voice, Gleason now speaks via a computer and has worked tirelessly to ensure other ALS sufferers have access to voice-replacement equipment like his — a campaign that is featured in the film.

Also central to the film is wife Varisco’s journey as a new parent and her husband’s supporter and caretaker. There were trying times, she said, when she wanted nothing to do with the shoot.

“I do remember,” said Varisco, “I screamed at one of our filmmakers, David Lee. I said, 'Stop filming me!' and he put the camera down.” She went on to say that it had been a breaking point for her.

Gleason acknowledged that telling his wife’s story was, however, vital.

“I think this is possibly one of the most important and revealing threads in the film,” he said. “Also, this is another important aspect Clay was able to illuminate for the audience. It takes an incredible commitment to live triumphantly with ALS in every aspect. The toll it takes on spouses is real and severe. Some people call it strength, others say we’re being courageous. Some would even say we’re crazy. Michel has been all of those. But most people don’t live their lives compressed into a two-hour film. It’s incredible and amazing to see how Michel navigates a lifetime of hurdles in just six years. I’m really proud of her.”

When asked by an audience member when the couple planned to show their son the video journals in the film, Gleason said, “My journals will be collecting dust because, in reality, we’ll be kicking f—ing ass as a family,” which was met with much-deserved, overwhelming, loud applause.

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