For those of you unfamiliar with the story of Steve Gleason — in particular, what has happened in his 39 years on Earth that have led to Gleason, the documentary on his life — here it is in a nutshell: Gleason was a former professional football player who spent most of his career playing for the New Orleans Saints. In 2006, the Spokane, Washington native blocked a punt that led to a touchdown in the opening moments of the Saints’ first game back in New Orleans after Hurricane Katrina decimated the city and region the previous year. It was one of the more electrifying moments in television sports history, and people who were in the Superdome that night almost universally describe the moment Gleason blocked the punt as one of the more unforgettable and euphoric experiences of their lives. For the people of New Orleans, and the Gulf Coast region, it was a sign of life they desperately needed. It was a moment of such significance that a sculpture commemorating the moment was erected outside the Superdome a few years ago.
After retiring from the NFL in 2008, Gleason made New Orleans his home. He married a local girl, Michele Varisco, and together they began building a life. But then in 2011, they were thrown for a tragic loop: Gleason was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. Not long after, the couple found out that Michele was pregnant. Fearful he might not live long enough to have much of an impact on the life of his soon-to-be-born son, Rivers, Gleason hatched a plan to begin documenting thoughts in a series of video diaries. The Gleasons later hired two videographers, Ty Minton-Small and David Lee, to embed with them and capture more of Steve’s life on video. What was originally intended to be a gift of sorts for Rivers evolved into something much more, and director Clay Tweel came on in 2014 to help turn over 1,000 hours of raw footage into a movie.
And here we are.
Having seen the documentary, I can tell you this: I don’t recall anything that has moved me to tears as much as it did. Hell, the trailer alone reduced me to a puddle. Now, I should note that I’ve spent most of my life in south Louisiana and have been a Saints fan since I was a young boy, so perhaps I’m a little more susceptible to having my emotions stirred by this particular story. But I do think anyone watching it who has no connection to football or the Saints or Gleason will find themselves touched in some way. It’s one of the more intimate portrayals of a human life that I’ve even seen on screen. Steve Gleason is a rock star in New Orleans, perhaps more loved than Drew Brees and Sean Payton — the quarterback and coach who led the Saints to the franchise’s only Super Bowl victory — and the reasons why come shining through in the film. Further, Steve’s wife Michele comes across as something of a painfully human saint, exceedingly loving and selfless, but also at times fearful and frustrated, as any of us would be in her shoes. In all, the film is an up close and personal glimpse at love in the face of extreme adversity. It crushes you to pieces, then builds you back up again, and then repeats the same sequence over and over again. You walk out of the theater completely exhausted and drained, feeling as though you’ve just stepped out of the ring after a ten-round fight.
We spoke to Gleason director Clay Tweel recently to get the story behind the film; how he came to connect with Steve and Michele, how he pieced together such an immense amount of footage into a film, and how one of the more uncomfortable scenes in the movie was captured, among other things.
I guess I’ll start by saying that I think I cried — and when I say cried, I mean full on fits of sobbing…
Yes, I ugly-cried about 10 times watching the film. I’m someone who cries at movies to begin with, but this got to me like nothing has really ever gotten to me before, so congratulations on that. It was intimate in a way that I had never really…I can’t think of seeing anything that I’ve ever felt was such an up close and personal glimpse into a human life before.
Yeah, I feel similarly when I was coming onto the project. The footage that I was watching wasn’t like anything I’ve ever seen. There wasn’t really any sit-down interviews and it was all the camera kind of living with (Steve and Michele) and living with this family as they were going through disparity. It was exciting and heartbreaking all at the same time to be watching this footage because there were so many great moments.
You mentioned about coming on to the project. This film has had a very nontraditional development process, and I know you came on late after over 1,000 hours of footage had been filmed.
It was 1,300.
1,300. Can you tell me a little bit about how it all came to be?
Yeah, these two guys, Ty and David, had been filming for many years and had kind of become caretakers of Steve, babysitters of Rivers, and really become part of the family. They had made a teaser trailer that showed some of the best moments and really distilled the story into its emotional essence. I saw this teaser trailer and it blew my mind. I really felt how powerful the movie could be. For me, personally, it struck a couple of chords because I have an older sister who has MS and I had grown up around Muhammad Ali; my dad was his business lawyer for the last 30 years. I saw a lot of very strong parallels between the Alis and their family and the Gleasons. I just felt like I instantly knew how to tell the story. I flew down to New Orleans immediately and met with the family and Ty and David and talked to them about what I kind of saw would be an interesting way to tell the story. I felt this immediate connection to them. Had you met Steve and Michele before?
To me, anyway, they’re similar to Muhammad and Lonnie Ali. There’s a presence that they have that everybody in the room is kind of constantly focused on them, but also enraptured by them in a very unique way. Literally as cheesy and cliché as it sounds, Steve’s smiling can light up a room. It makes everybody feel good.
I know, I’ve experienced it. I can vouch for what you’re saying.
Yeah, that’s just special. Meeting them and hanging out with them and seeing how much love and passion they still have for life while they were going through all this stuff was something that was very important for me to try to portray in the film. While the movie is tragic and sad in spots, we also wanted to show that love and light that the family kind of held onto throughout all of this.
I think you do that successfully. And Michele says in the film, “I don’t want to be thought of as a hero,” or something to that effect, but man, she kind of is. She’s so selfless.
The catch-22 for Michele is the more she says that, the more people will try to make her a hero. She doesn’t want any of the credit, but she deserves all of it.
Some of the stuff that was captured on film is so shockingly intimate. There’s a scene of the two of them having an argument in their bedroom that was hard for me to watch. I felt uncomfortable, like I shouldn’t have been there. Why do you think Steve and Michele were willing to go there, so to speak?
I think the best that I can answer that is, one of the first conversations I had with Steve was he told me that he wanted to have this movie portray the day in, day out realities of what it’s like to live with ALS. That means getting into some pretty touchy territory and I think combined with having the camera in an intimate moment, you really have two people, Steve and Michele, who are able to articulate how they are feeling as they are feeling whatever they’re feeling, which is not a very common trait. Like you mentioned that bedroom scene, they’re having a pretty frank and direct conversation with each other, so you have very open and honest words mixed with silences that also say a lot.
It makes for a very dense scene, but they wanted to show what this disease does and I think that really should be a testament to the two of them for being as courageous as they are to show their vulnerabilities in that way, and really open up to the world and allow us to tell a story the way we did.
It’s pretty remarkable how these two guys, Ty and David, were just sort of flies on the wall the way they were, like in that bedroom scene, for so long. There’s one thing to know there’s a camera rolling in the room, but it’s another thing when there’s a human being sitting there with that camera.
It’s funny, we talked about it because they often filmed the nighttime routine of Steve because again, Steve wanted to show what it’s like to go through the disease. The nighttime routine takes like an hour, there’s lot of ins and outs to it. They would frequently film that going to bed sequence, and that night there just happened to be this argument and I remember David told me, “It was getting kind of tricky,” so he just put the camera down and walked out. You’ll notice that in the back half of the scene, the camera angle doesn’t move, because he just sat it down and left the room.
Were you familiar with Steve at all beforehand or his story? Were you a football fan? Was his situation something that was on your radar?
A little bit on my radar. I am an avid sports fan, I watched that game in 2006 with the punt block, I watched that live on Monday Night Football.
One of the greatest moments of my life.
I remember having chills when that happened. I grew up in Virginia. I’m a Redskins fan. I had no real reason to side for either Atlanta or New Orleans, but I think it was (former Saints linebacker and Gleason producer) Scott Fujita who told me, “We were America’s team that year.” That’s how I really felt, I was so overcome with emotion watching that and then I remember watching in 2011, the game where Steve led the “Who Dat” chant in the Superdome before a game. That’s one of my favorite scenes in the movie. That moment I remember as well because the telecast kept cutting back to Steve on the sidelines throughout the whole game. I didn’t know the amount to which he had deteriorated until I saw the trailer that was presented to me. The last I had seen him, he was still upright and walking.
I’m curious, when you started this thing out, and there’s 1,300 hours of footage to go through, where do you start? How did you embark on this task from the get-go to figure out how to trim it down to two hours or less?
We had Ty and David come out and they were assistant editors on the film, so they helped certainly prioritize because they lived it and knew the footage so well.
They knew where the good stuff was.
Indeed. That helped save us a ton of time and they helped us prioritize what to watch and myself and co-editor Brian Palmer, the four of us and a couple interns, we watched every stitch of footage, all 1,300 hours. Then we were able to really go back and jot down what the moments were that stood out to us. What revealed itself was this intergenerational story of fatherhood and the story of testing the boundaries of love between a husband and a wife. That helped us kind of tear down and eliminate things right off the bat, and on top of that we were adhering to a pretty strict, chronological format because the disease is a degenerative disease. We wanted people to go on that emotional ride, we wanted to crash the story where it mirrored the experience of Steve and Michele.
What they often said was that it was like a stair/step type of experience where he would lose some sort of motor skill or function, then they would try to adapt and try to figure out, whether it was putting a ramp up in the front of their house so he could get in the front door. Whatever that thing is, then you adapt to that lifestyle then, low and behold, two to three months later there’s another thing you have to adapt to. Having those ups and downs and having the humor evolve out of some of these darker moments was really something that was important to us to really take the audience on that emotional journey with them.
You mentioned that your dad was Muhammad Ali’s lawyer; I’m curious, did you get to spend much time with him at all with your dad working with him?
Absolutely. The Alis, my whole life I got to see them a couple times a year and, in some instances, they even stayed at our house when I was young. They became close, personal friends with my family. My entire family, they were at all my sisters’ weddings.
I got to know them very well, they were my personal heroes and it was very tough to experience Muhammad’s passing a couple weeks ago.
Do you have a story you wouldn’t mind sharing? A most memorable thing from your time knowing him that you’ll always remember?
I think the story that stands out was one of the first times that I ever met him. I was probably 5 or 6 years old and he was the first person to ever show me a magic trick, as far as I can remember. He did the handkerchief routine where you make it disappear in the hand. This was at a hotel in Charlottesville, Virginia where I was growing up, and he walked away from me and then he made this whole crowd of people stand in a particular place, then he did this thing where he was levitating off the ground and everybody started freaking out. It was just like…he was certainly affected by Parkinson’s at that point, but again, he still could bring so much joy and love to people and that is what I’ll remember, the immediate impact and goodwill that followed him everywhere he went.
Gleason opens in theaters nationwide on Friday, July 29. Watch the trailer below.