Gleason follows the life of ex-NFL football player Steve Gleason and his battle with ALS through video journals and, later, camera footage. Gleason is the star here as his honesty is what draws one in. He has been described as a warrior poet and that description definitely applies. His travels with his wife are sure to pull at the emotional strings, but the film also feels honest in its intent and drive. That is largely due to Gleason and the people around him, but also to director Clay Tweel. It was a great pleasure to talk with Tweel as I asked him about the practicalities of financing a film like this, how involved Gleason and his wife were, and what his goal was in the making of this documentary. Enjoy the full conversation below.
Bill Graham: First off, I wanted to know the genesis of this project and in particular, at what point you got involved with Steve [Gleason]? Because he was doing the video journals and things like that ahead of when film crews got involved in this. So I’m curious who reached out to who, and how that relationship evolved.
Clay Tweel: So the background is that, Steve is having trouble — he’s losing motor skills — and so he needs some help to document his life, and so the project was growing beyond potentially just making video journals for Rivers [Steve’s son].
There’s these two young kids, Ty Minton-Small and David Lee, fresh out of school and they came on board and really embedded themselves with the family and became a part of it — they became brothers to Rivers and caretakers to Steve, and were documenting and were around for about three and a half years. So I became involved when a couple years ago I saw a clip that was very emotional and really distilled what was the heartwarming and, at the same time, heart-wrenching emotional component of the film. The producers Kimi Culp and Scott Fujita were reaching out to find a creative team to help shape this movie, so myself, [and producers] Seth Gordon and Mary Rolich came aboard to help turn this into a feature-length documentary out of the — at that point –12,000 hours of footage that had been captured over four-and-a-half years.
It’s a lot. I’m curious at what point do you just get a hold of all this material? Because at the same time, Steve is still making more and more material. So you’re living with the actual subject as well — it’s an ongoing process — so I’m curious how much do you map out what you’re trying to tell narratively, and how much did you actually get Steve involved? Because it’s very obvious Steve would want to be involved in your process.
Sure, it was his idea from the beginning, so it would have been irresponsible for me to not have him involved. The first conversation that I had with him, I was going down to New Orleans and professing my love for this story, and it was really great. Steve is very well-read, and he kind of breaks the mold when it comes to football players. I’ve heard his friends describe him as a warrior poet. So he’s very philosophical, and I got down there and I could talk to him about Joseph Campbell and the Hero’s Journey, and story structure. So it was amazing to be able to collaborate in that way with somebody who is not coming in completely blind.
In terms of what we had to try and plot out, the story was, on first blood for me, really about a guy who, through a series of tragic circumstances, finds his purpose in life — his purpose of why he was living and what he wanted to impart to his son. But in really digging into the footage and getting into what we had caught on camera over the years, was the story of intergenerational fatherhood and the caretaking story, and the husband and wife story of Steve and Michelle. Those were both really big surprises to me, I didn’t think we would have the ability to go as deep as we did in those areas.
It’s interesting because you get a lot of honesty out of the subject matters in the film — whether it’s Michelle, or Steve, or his father, or anyone dealing with the situation at hand — and I’m curious how much you push for that. Because it seems for Steve and Michelle both, that was the reason they got together and they click so well: because they were both very honest.
And they didn’t care about the fact that people aren’t supposed to talk about it in that sense, but in a way that’s silly because this is life and we have to talk about it and we have to deal with it. So, I’m curious how much of that is presented and how much of that you had to coax out of them.
I didn’t really have to coax much. They are incredibly unique people in that way, in exactly what you’re describing. They are able to — with a great amount of clarity and openness — talk about their emotions and exactly what they’re feeling as they’re going through something. The courage it takes to be that vulnerable and that raw in trying times, combined with the fact that the camera is there and it’s always around. There’s this extreme experiential vérité film being made at the same time with those types of people — that combination makes the film incredibly moving and powerful. That just equals the raw aesthetic and tone of the entire thing.
Steve mentions Hawking, and especially the unit that he uses to speak and uses his eyesight for that purpose. The film The Theory of Everything explores a lot of what’s going on in this film towards the end. That film came out while you were making your film and I’m curious how Steve and Michelle responded to it, because I’m sure they had to be aware of it and have seen it at some point.
Yeah, I talked to Steve and Michelle about it a little bit and I do know that they both liked it and thought it was a great movie. But what Steve said to me very early on was that he wanted to show the daily brutal realities of what this disease does to not only the people [with ALS], but the people around them. So I think The Theory of Everything certainly did that to a certain degree, but there are little moments in it: for instance, they’re at dinner, then all of a sudden Stephen Hawking is upstairs in bed, and his wife is talking to him in bed, and what you don’t see are the little in between moments, right? Which is she’d have to carry him up the stairs, physically lift him and put him in bed.
There’s maybe a fifteen-minute process we just skip past.
Exactly. The more progressed you get [with ALS], the longer that process takes. So, by the time I met Steve, it took him about an hour to an hour and a half to get ready for bed every night. This is before he had the surgery, but it was a process. Steve asked to be filmed during those bedtime routines a lot because he wanted the world to see how much he had to go through, just to show people what his daily routine was.
I think in a way, more than anything, his story is so unique and interesting but he has a disease that a lot of people have to deal with and it’s something that becomes relatable. It’s that cliche of, “every person puts on their pants one leg at time,” right?
In this, it’s everyone deals with the same stuff, generally, when it comes to ALS — the progression of it, the degradation of bodily functions, and your ability to move and talk — and that is what becomes relatable and unique about this film. You don’t shy away from it. I think in a way that’s probably the smartest move of the film, is making it to the point where you have this unique guy who has this situation that a lot of other people can relate to.
I think you’re right. I think that in being more specific you actually get to be more universal. If you really get to not only show the unique position these people are in, but you’re also getting to the core of how people are feeling about these things and these challenges that they’re coming up against — you’re getting to their motivations and their thought processes — then you’re going to be able to get to abstract, more universal themes. That’s what’s going to connect your audience. At any one time there’s only 30,000 people with ALS in the U.S. but, for instance, there’s a scene in the movie where Steve and Michelle are having a fight before bed, and I think that hits a lot of married couples in general. You have one person who wants to talk about someone or something and the other person who is too tired to. I like those moments where we can have something specific yet universal at the same time.
I’m sure you did a lot of self-reflection while making this film, because it’s just something you can’t help but do. I’m curious what you’ve taken away from this filmmaking process and from being around Steve and Michelle. Especially with Steve’s drive to put things down into a medium that he — or potentially someone else — can show his son.
I think the main thing that I’ve gotten is just an overflowing sentiment of perspective — the perspective of my own problems in relation to what’s happening to the rest of the world, and really getting to that core belief of do the things you love around the people you love, with the people you love. It sounds very simple but it’s often very hard to accomplish. Just like for Steve and Michelle, when you’re confronted with those types of limitations and challenges, you’re often just left with these simple phrases and that’s what I’m left with. That, in conjunction with the power of the resilience of the human spirit. The movie is a very honest reflection of the human experience — there’s going to be these crazy highs and crazy lows, there’s going to be tragedy and chaos and there’s also going to be humor and hilarity and the joyous times as well — and it’s all a part of what it’s like to live.
This is a documentary and it’s about a certain subject that Gleason is very involved in with ALS, with the Team Gleason foundation. The idea that a documentary is made about his particular life, it would seem kind of a no-brainer that his own foundation might fund it. But I know the reality isn’t that cut and dry, it’s not as easy as that. What’s the reality of how you got the film funded and how you got the money to put it together?
So Seth Gordon, Kimi Culp, and Scott Fujita really put us in a great position. We teamed up with IGM Films, we were one of the first films they came on board to help finance. I don’t normally talk about investors or financiers, but they were fantastic to work with. I feel honored and grateful that they came on board and really put a lot of muscle behind the movie. Then we had some people and some corporations that are organic to the story: Steve uses a Microsoft tablet to speak, so Microsoft came on and pitched in a little bit; Steve recorded a lot of his video journals on GoPro, so GoPro came on and pitched in a little bit, so we were very fortunate to have these people. I think Steve’s story resonates so much and affects people so powerfully that we were in a good position to get the film financed and bring it to the market.
You’ve been a producer on a film like this before, whether it’s something like The King of Kong: A Fistful of Quarters where you really dive into some of the subject that maybe you wouldn’t normally cover. I’m curious what you had to cut out of the film for runtime purposes or was asked, or maybe just for yourself you had to cut out.
Anything in particular you can think of?
There’s so many things. There’s so much. I’ve got this question before and there are so many things, my brain just goes in a million different places. These people were so honest and real, there were so many great, great moments. I think that on that Team Gleason side of things, there are a lot of caretakers and people that worked with the foundation and that were really special and were good characters.
Also, we highlighted through the movie how much Steve loves technology, and how he uses it, but the guy is the beta tester for every new piece of technology for ALS patients. He’s like one of the world’s fastest typers with that eye-tracking technology and he goes to Microsoft and lays the smackdown on their programmers and be like, “This is what I can’t do. Fix it.” So those little stories and just how passionate he is about the technology was not necessarily on-theme all the time, with fatherhood and Michelle’s story, but it is fascinating and I think something that he’s very passionate about. So, I tried to use it when I could, but really there’s some great moments in there that didn’t make the cut.
Gleason is now in limited release and expanding.