Director discusses ‘Gleason,’ his intimate portrait of life in the face of ALS

“Gleason,” the intimate documentary about former NFL safety and Spokane native Steve Gleason’s battle with Lou Gehrig’s disease, opens nationwide this weekend after a successful festival run, which included a win for best documentary at the Seattle International Film Festival.

The film is the latest from director J. Clay Tweel, who got his start working as an editorial assistant for director Seth Gordon (“The King of Kong,” “Horrible Bosses”). His 2015 documentary “Finders Keepers,” the stranger-than-fiction story of a custody battle over an amputated foot, was nominated for the Grand Jury Prize at last year’s Sundance Film Festival.

In the weeks before the Spokane debut of “Gleason,” which Gordon co-produced, Tweel talked with The Spokesman-Review about his goals in depicting the Gleason family’s journey and why their story resonated personally with him.

The Spokesman-Review: I saw “Gleason” about a month and a half ago at SIFF, and it really stuck with me. Does it seem like this story is resonating with audiences?

J. Clay Tweel: Yeah. That’s one of the more rewarding parts of this process, how much people are moved by the film, and seeing them and listening to them have reactions and leaving the theater and calling their dad who they haven’t talked to in awhile. Or watching them interact with Steve and (his wife) Michel, appreciating them and praising them for letting their story be told.

SR: So I’m assuming, then, that the Gleasons have seen the finished film?

Tweel: Oh, yes. Many times.

SR: What were their reactions the first time they saw it? I’m sure it was a wrenching experience for them to watch it.

Tweel: It was. It was wrenching for everybody. I was incredibly nervous. We showed them an early cut of the film in their living room in New Orleans. Both of them started crying about 10 seconds into the movie, and I thought to myself, “Jesus, what did you do?” But they watched the whole thing, and it was an emotional experience. At the end, I went over to Steve, and he had typed something. I was waiting to hear what it was, and he just said, “Dude, that was intense.” … But they really liked it, and it was a big sigh of relief.

SR: How did you become involved with documenting their journey?

Tweel: A couple years ago, I saw an investor teaser trailer that was made for the film. It was incredibly powerful and did a really good job of being heartwarming and heart-wrenching at the same time. There were a couple of personal connections I had. My older sister was diagnosed a few years back with multiple sclerosis, so neurological disorders are something I think about and mean a lot to me. The other thing was that, for the past 30 years, my dad was Muhammad Ali’s lawyer. Growing up around them and being family friends with them, I felt like I was in a unique position to understand what Steve and Michel were going through – this sports hero figure living for something larger than himself and having this strong-willed wife. I jumped on a plane and flew down to New Orleans and professed my love for the story. Then we were off to the races.

SR: At what point after Steve’s diagnosis did you actually start filming?

Tweel: I came along in 2014, after his (tracheotomy) surgery. There was a couple of young guys, (cinematographers) Ty Minton-Small and David Lee, and they really embedded themselves in the family to help capture a lot of this footage when Steve and Michel could no longer do it themselves. We inherited a lot of footage from them.

SR: After you came on board, how long were you actually filming?

Tweel: At that point, there were 1,200 hours of footage that had already been captured, so Steve and Michel weren’t super psyched to have more filming done. So I held off and only went down there when something was going down. David was down there when the surgery happened, and I’d go down for, say, (their son) Rivers’ 4th birthday. I went to a couple football games with Steve. It was just to check in and get a couple extra pieces as things were happening.

SR: There’s some really intimate stuff in this movie. Was there anything that the Gleasons made off limits to you?

Tweel: No, they were incredibly open and honest with me. I felt a deep responsibility as a filmmaker to not do anything that would exploit them, and I didn’t want to make a movie that was going to make anyone uncomfortable, because that doesn’t benefit anybody at the end of the day. You want to create this movie that’s hopefully touching people in a variety of ways, and you want everyone to be happy with it.

SR: The video logs that Steve made for his son are a huge part of the movie. Do you have any idea how many he recorded?

Tweel: We show a tiny amount compared to what there are. I think our final count was 120 hours of video journals. We transcribed them, and they’re about 350 single spaced pages of text, and we’ve arranged them and organized them for Rivers whenever Steve and Michel see fit to show him.

SR: When you went into this project as a filmmaker and a storyteller, what were your goals in terms of how you were going to depict the family and how this disease affected them?

Tweel: Well, I’ll tell you what my initial goal was and then how it changed. When I came on, I felt like the story was going to be about a guy who, through a set of tragic circumstances, was finding his purpose in life, that purpose being to inspire other people and to inspire his son. What I found was this story of intergenerational fatherhood, that the ideas that Steve was trying to impart to his son were a direct reflection of his own relationship with his own father. … And I think Michel is such an amazing person, and the way that we could explore the depths of her emotions and what she’s going through was something that was totally surprising to me. I didn’t know we’d be able to go there with her. I think it opens up a whole new side to the film and elevates it. Steve’s initial goal was to try and show the daily realities of what it’s like to live with ALS and have people experience it with the family, and I feel like that was the guiding light for us as a film team.

SR: I appreciated that it was inspirational, but it wasn’t blindly inspirational. There’s that whole passage where Michel is questioning her role in this marriage, and you don’t often see that in movies about diseases.

Tweel: Yeah, and I think that if we made a movie that was a pure hero-worship piece, people who actually have ALS would feel cheated. That’s not something any of us wanted to do. You can’t have a scene where Steve is having a statue dedicated to him without having the scene where he goes home and craps his pants. That’s his life, and that’s what his existence is, truly. We wanted to be as open and honest as Steve and Michel were in telling this story.