Steve Gleason is doing well, all things considered. The former Saints safety was diagnosed with ALS in 2011. In the new documentary “Gleason” we see his bodily collapse step-by-step; it ends with him completely paralyzed, unable to eat or speak, communicating through a cutting-edge computer program. According to his wife, Michel Rae Varisco — the film’s other main “star” — at least it hasn’t gotten worse.
“The good thing is he suffered — most likely — all the loss he will have to suffer,” Varisco tells us. “He is what he is, and we’ve been through that traumatic time. Now, instead of focusing on the loss, we’re focusing on what he can actually do.”
They have been busy. Since its Sundance premiere, Varisco, Gleason and their young son, River, have been on a nation-wide press tour. It’s not easy: Varisco says any travel requires not only a bulk of equipment but two more caretakers than usual, though that’s not a bad thing for someone who needs constant care. And they’ve gotten pros at it: By now they know how to get Gleason into a car, which headrest is best, etc.
The film itself is lucky to exist, at least in its singularly intimate form. The film is made of footage they either shot themselves in the early days or by filmmakers they hired when things got rough. In 2014, they roped in Clay Tweel, a documentarian (of the more slightly more light-hearted “Finders Keepers,” about a man who finds an amputated leg in his new grill), to film more footage and piece it together into what became “Gleason.”
“We wanted to make a film that was going to be true to ALS patients’ stories,” Tweel says. “If we were going to tell a story that was a pure hero piece with rose-tinted glasses on, it would be false. It would be something that would anger patients and their families.”
That meant finding a balance between heartbreak and humor — which is how Gleason and Varisco have dealt with his condition. “Anyone who’s ever been in a room with Steve and Michel knows they have this zestful life. You can feel that when you’re around them,” Tweel says. “The reality of ALS and the day-to-day challenges can be hard to watch sometimes. We wanted to show both of those and have them interwoven — to show what the truth of their experiences are.”