Even when reality seems bleak, adversity can fuel the human spirit to strive beyond hopelessness. For Steve Gleason—the New Orleans Saints safety who famously blocked a punt during the team’s first game in the Superdome post-Hurricane Katrina—hardship came in the form of a progressive disease.

Gleason’s illness, ALS, slowly erodes muscle function and leaves those it affects unable to move or speak, even while retaining cognitive abilities. Fearful that his ability to communicate might soon disappear, and knowing that his wife, Michel, was expecting their first child, Gleason decided to leave behind a series of video journals for that son, Rivers, to watch.

Director/editor Clay Tweel’s (Finders KeepersGleason is comprised of Gleason’s first-hand accounts, footage shot by two of his family’s caretakers, and interviews. An intimate story of a father battling the monster that lives inside him and passing on love and wisdom to his son, the film is a heartbreaking embodiment of heroic conviction. Tweel’s direction looks his subject’s disease straight in the eye without sugarcoating its horrific effects, yet highlights the grandeur that a life lived with purpose can create, even during times of great loss. Though his voice is now digitally simulated, Gleason’s essence remains intact.

MovieMaker spoke with Tweel about his opportunity to assemble a story from deeply personal footage, what he’s learned about ALS, and how documentarians must avoid exploiting their subjects’ most tender truths.

Steve Gleason skydiving in Gleason

The irrepressible Steve Gleason skydiving in Gleason

Carlos Aguilar, MovieMaker Magazine (MM): Some of the things that make a great documentary are the access and amount of time that a filmmaker spends with its subject. How did you obtain such intimate images from Steve and Michel Gleason during such a vulnerable time for their family?

Clay Tweel (CT): I 100 percent agree that access is what often makes some of my favorite documentaries the strongest ones. This is a great example of that. Steve and Michel were filming themselves for a big chunk of the beginning of this movie and when Steve could no longer film himself, he needed some help. These two young guys, Ty Minton-Small and David Lee, came in and helped them start shooting, but really became members of the family. They were filming everything but also care-taking for Steve and, eventually, babysitting Rivers. They were trusted members of the family.

A lot of the intimacy of this footage [is] because it’s a family affair. Someone directly in the family, or one of these guys, filmed, so you have that intimacy and it creates the rawness and vulnerability that Steven and Michel show frequently throughout the film. You layer on top of that the fact that both Steve and Michel are very articulate in a way that is pretty unique. They can articulate what they are going through as they are going through it in that moment. I think that’s a pretty special thing. You have both the access and the articulateness of these characters and the combination is very powerful.

MM: When did you come in to the Gleasons’ lives and how did you understand your role in constructing this narrative out of their footage? 

CT: I came in a couple years into the process. There had already been about 1,200 hours of footage captured at that point. A lot of what I was charged with doing was figuring out what the narrative was, what the story was that was going to be distilled from all of this amazing footage. There were a thousand different stories that you could [see], but really what struck me was this intergenerational story of fatherhood. Laying the bones of the film on that, showing Michel’s side of the situation, and being able to delve into the emotional complexities of what is like to be a caretaker—I think those things in particular elevated the film to a story beyond ALS, beyond football, beyond a sports hero narrative. Those were things that I latched onto as a way to help distill the story down from all that footage.

MM: Was it difficult to strike a balance between your stylized, prepared footage and Steve’s first-person diary?

CT: It was certainly a challenge but I wanted to, as much as possible, lead the audience in that very experiential, verité footage. I thought that was going to be the most impactful part of the film. I tried not to go to those interviews as much, because [during] one of the first conversations I had with Steve, he said that he wanted the film to show the day-to-day realities of what it’s like to live with ALS and to be around somebody with ALS. That was going to be the tool to raise even more awareness. Instead of going a more didactic route of showing what ALS does to a body, I felt like it was going to be more powerful to, in a subtler and nuanced way, just show it. You are just going to visually experience the deterioration and live in these moments with these people.

MM: Taking into account the emotional content of the film, were you concerned about being exploitative, and looking to instead be compassionate and honest in your depiction of their struggles?

CT: Absolutely. My responsibility as the filmmaker was to make sure that I wasn’t exploiting their vulnerabilities or  taking advantage of the fact that there was so much raw truth and honesty being exposed by both Steve and Michel. I was able to have a dialogue and collaborate with them in order to find that line. I wanted to stay true to Steve’s original taskto show these realities and these challenges—but also show them in a way that wasn’t going to make anyone uncomfortable. It was always about trying to find that line so that I wasn’t exploiting them.

MM: Did you have to be educated about ALS when approaching the project? Were there symptoms or details of the disease that you weren’t aware of until you observed it up close while making the film?

CT: Yes. I had to certainly do some research and educate myself about ALS. I didn’t know that ALS patients can still feel everything. It’s not like their nervous system dies in any way, it’s just that their brain stops being able to communicate with it. They can still feel it. If a fly lands on your nose, you can still feel it, you just can’t move your body in order to swat it away—which, if you think about that part of the process, that’s pretty excruciating. The fact that only 30,000 people at any given time in America have ALS makes it a fairly rare disease, but it ripples out and reverberates so much for the people who have it and the people around them. When I would tell people in my life that I was working on this documentary, the number of people who said, “Oh, my cousin has ALS,” or “ My aunt died last year,” was surprising to me. The number of people who had been directly affected by this disease was very shocking to me.

MM: Given that, as you mentioned, this disease only affects a small amount of people, would you say that the fact that Steve is a professional athlete gives the story an element that wouldn’t be there if it was about a non-public figure? We sometimes see athletes or celebrities as untouchable…

CT: I think that if he wasn’t a football player it would still be a very interesting story for me. I would want to still tell that story if all things were the same. I do think that the football-sports hero element does add another level of complexity and conflict—you see how Steve becoming the face of ALS has its downsides as well, and how it’s affecting his family. To me it was a value add in terms of trying to put the story together. But I would still want to tell Steve and Michel’s story if you’d never heard of them just as much.

Rivers Gleason, Michel Varisco and Steve Gleason in Gleason

Rivers Gleason, Michel Varisco and Steve Gleason in Gleason

MM: One of the unexpected aspects of the film is its focus on Michel’s experience in her role as caretaker. What was it about her perspective that made you believe it needed to be included? 

CT: There are scenes in the movie where you’re getting a window into what Michel’s life is like. She’s emotionally exhausted and physically exhausted. You’re seeing how that’s taking a toll on her. I honestly haven’t seen that in films much. It was very interesting for me to learn about it and to talk to her about it. Then, once we started to show her the film, she said that no one had ever shown her story before. She’s very touched and excited that people are going to be able to see what her experience is like.

MM: Technology is a crucial element in both the making of the film and Steve’s life. Was its role in the lives of people with ALS something that you discovered while making the film?

CT: Technology is crucial is so many ways. It’s crucial for Steve and I to be able to talk. He is using his eyes to type and he can message me all the time and we can have a dialogue. He is also using his Microsoft tablet to record a conversation that he and Rivers were having in the car towards the end of the film. He’s still able to film things in his own life and we could used them in the movie.

The other side of the technology portion is that, as Steve says, “Until there is a cure, technology is the cure.” It’s the thing that allows patients to still communicate with their families, still feel like their lives have value. One of his driving purposes in life at this point, besides being the best father he can be, is to use Team Gleason to try to get technology and further progress technology to help other ALS patients.

MM: Pearl Jam’s music scores some of the most poignant scenes in the film and the band is a very important presence in Steve’s life. Was it easy to get them on board with the film, given their personal link to Steve?

CT: Pearl Jam has been great. I think a few years before Steve got diagnosed, he struck up a friendship Mike McCready, the guitar player from Pearl Jam, and after the diagnosis they really became close and the whole band has embraced Steve. They wear Team Gleason t-shirts when they’re on the road touring. From the very get-go they have been supporters of the movie and done whatever we’ve asked of them. Friends of Steve will really go above and beyond and do whatever. Whether it’s Pearl Jam, Scott Fujita, who’s a friend and producer on the movie, or [Saints quarterback] Drew Brees and [Saints coach] Sean Payton, these guys will show up and do whatever for their friend and it’s amazing to watch.

Gleason and Drew Brees in Gleason. Photograph by Lori Burns

Gleason and Drew Brees in Gleason. Photograph by Lori Burns

MM: The central theme of Gleason, beyond ALS and its processes, is the father-son relationship. Did making the film prompt you to think about your own relationship with your father? Have you wonder what Rivers’ reaction will be when he grows up and sees the film and Steve’s video journals?

CT: I certainly thought about how Rivers would take the movie. The whole concept of the film, from the very beginning, is this guy leaving his legacy to his unborn child… who then grows to become Rivers. We wanted to create a film that was going to be just as powerful and meaningful for Rivers as anybody else. At the same time we have also set, categorized and organized all journals that Steve has done for Rivers. There are about 130 hours of footage of Steve talking to Rivers, telling stories, little anecdotes, etc. We have those on a hard drive ready for whenever Steve and Michel want to start showing Rivers these things as well.

In regards to my own father, it’s funny, the last two films I’ve done, both Finders Keepers and Gleason, have a lot of father-son dynamics. I got asked this at Sundance as well, because this is my second year in a row there with a film, and people were like, “Are you and your dad OK?” And yes, we are great. My dad and I are all good, but I think it really just comes from me as a storyteller. I like trying to tap into what are the motivations behind why people do what they do and some of the deeper pathos to understanding people. In these two instances, I think that the father-son relationship reverberated into the conflicts that are going on currently in these people’s lives.

MM: Since your first film, Finders Keepers, was a bizarre, dark comedic tale and Gleason is more of an emotional rollercoaster, was it jarring for you to travel between these two films so closely?

CT: Finders Keepers was a great project to do before this one because, in my mind, they are the opposite sides of the same coin. I think that Finders Keepers is on its surface a very funny film that gets to be quite tragic and poignant, and I think the reverse is true of Gleason. I think the log line sounds very tragic, and then as you watch, it’s actually quite humorous and hopeful in a way that people don’t expect.

MM: Have you shown the film to other people with ALS and their families yet? They must be the toughest audience in terms of their judgement of whether their experience was represented truthfully or not. It’s a beacon of hope but also showcases the most disheartening aspects of the disease. 

CT: We have shown it to a fair amount of people with ALS. National chapters of organizations advocating for ALS awareness are getting behind the movie in a big way. They showed the film for National ALS Week in Washington, D.C. for about 500 people, caretakers and patients. It went over extremely well. We wanted to make a movie that was going to be true to the experience of what’s like to have this disease. If we had made some sort of hero piece that was just the rose-colored glasses of Steve’s experience, then it would be a great injustice to the people that actually have ALS. We’ve been getting a great response from patients and caretakers alike. MM

Gleason opens in theaters July 29, 2016, courtesy of Amazon Studios and Open Road Films.