Clay Tweel was presented with hours of footage prepared by football star Steve Gleason and his family and was challenged to make it into a feature film documentary about Gleason’s struggle with ALS, known as Lou Gehrig’s disease.   He had been a New Orleans Saints defensive back who won the hearts of the community with by blocking a punt to win the game in the team’s first time back on the field following Hurricane Katrina.  It was a welcome symbol of resilience for the city and a signal to the world.

He faced a more daunting personal challenge when he was diagnosed with ALS.  Six weeks later, his wife Michel learned she was pregnant.  Steve began to record what would amount to more than 1300 hours of videos while he could still talk and move for his son to watch when he got older.  That was what Tweel had to start with when he made the new documentary “Gleason.” In an interview, he talked about what it was like to try to tell this story honestly with new footage and the most compelling of what Steve had recorded.

“For the first three or four years it was pretty much under Steve’s purview to come up with the content for this movie. So he was recording videos for Rivers his son and also he had a couple of guys who came on to help him film when he would no longer do so because of his loss of motor skills. These two guys, Ty Minton-Small and David Lee, who became part of the family and caretakers and babysitters, they are the reason that the footage is so intimate and personal. So it was such a great thing to have Steve who was thinking like a filmmaker, who is framing up shots and is drawing on these trips and adventures to Alaska and shooting sunsets and car ride. He became very passionate about documenting his life, whether it’s for Rivers or eventually for the world to see. So I feel like I got pretty lucky in coming aboard the project when they were about three or four years in, there was all this great footage captured by the team already.”

Tweel acknowledges that the film had “excruciating moments” as Steve’s abilities became more and more diminished and had to allow others to take care of him. “Those excruciating moments were mostly shot by them. My job was to come in and distill the story down to find the through lines to this giant amount of footage and keep it compelling. And so we did have to go back and film a few sit down interviews to tie them in together because in those four years of filming and no one ever really asked, ‘What’s happening?’ or ‘How do you feel about it?’ So we had to go back and add a little context. But we tried to keep that to a minimum and really leave the the experience the film as in the moment and verite style as possible.”

The progress of the disease dictated a chronological approach. “ALS is a degenerative disease and so we felt like it was important to keep pretty tightly to the chronology because if you show Steve in a wheelchair and the next scene he’s standing up it’s going to not really jibe and it’s going throw people off and be distracting. So we held to a pretty strict timeline of keeping the footage in chronological order, so that gave us somewhat of a restriction or a box to play in and then in sequencing out what were the kind of strongest moments in the footage. So the story kind of revealed itself. The father and son storyline was very strong, and then what was a great surprise to me was I actually found these moments that were really amazing between Steve and Michel. We get to delve into her role through this whole thing which I really personally enjoyed because with all the focus on Steve, Michel doesn’t get highlighted that much. It was an interesting way to show a further background to their journey. She is more than any documentarian could ever ask for in terms of someone who wears their heart on their sleeve and is completely open and honest. We really have to first and foremost take our hats off to Steve and Michel for being as vulnerable and open and honest as they were and allowing us to tell the story that is this personal and intimate. So Michel, she pulled no punches, she held nothing back and it really made for some compelling footage.”

One of the hardest scenes to watch is when Steve, by then talking through a computer like Stephen Hawking, tells the exhausted Michel how devastating it is for him when he does not get his “Rivers Sandwich” kiss goodnight. It is painfully intimate to hear that argument with a mechanical voice that does not express the feeling of the words. “That was Ty and David. They were filming but if you notice at a certain point in that scene it was kind of tense and they just left the room. But they left the cameras on. I loved that scene. That’s one of Michel’s favorite scenes as well because she’s like, ‘That night I was so tired that I just could barely keep functioning.’ What I love about it is, yes, it’s a scene between a caretaker and a patient but it is also just a fight between a married couple and it’s done in such a raw way that I feel like any married couple can relate to that kind of conversation where one person is sick of dealing with something and doesn’t really want to talk about it and other person does. So hopefully there are lots of moments in the movie that go beyond the experience of ALS patients.”

At one point in the film, words on the screen tell us that almost all ALS patients choose not to get a breathing tube, meaning that when they can no longer breathe on their own they decide to stop medical treatment and they die. But Steve chose to continue. “One of the more powerful sentiments certainly in the movie is that issue with mortality and the will to live. There was really no discussions on camera of Steve and Michel talking about that but I think at that point Steve had discussed it and decided that he wanted to try to continue to live for as long as he could to be a part of his family’s life. So being around for his son was paramount to him and whatever he could do to be there he was going to try it. And it was a risky surgery and it worked out he hasn’t had too many complications with it so it seem like he is going to be able to, if things go well and he can avoid infection, be around hopefully for a good long while to get to know Rivers even more.”

There are two important father-son relationships in the film. We also see Steve and his own father struggle over their different views about God, and how important it is to Steve that his father accept him even though they disagree. Michel’s warm and understanding relationship with her own father provides contrast. “There are so many things that the film says about fathers. I think one of the more interesting sentiments along that dramatic thread is this idea of passing yourself on to the next generation. There is an interesting dichotomy between what Steve’s dad said in one scene where he is talking about generational sin, you know that you pass on your flaws to the next generation, whereas Steve at the end of the movie says that you passed on the best part of yourself. I think that you get the good and the bad and that is important to know I guess as an overarching statement. It is important to know where you come from because that is a part of what you are for the rest of your life.”