“It’s not going to be easy, but it’s going to be awesome. Awesome ain’t easy.”
It takes Steve an hour-and-a-half to get out of bed in the morning, but he hasn’t lost his sense of humor or purpose in this world.
While you think you may have a grasp on what this documentary will cover, you really have no idea until you watch it. This isn’t a documentary about football, and it’s not even a documentary about living with ALS. Gleason is about being human and learning how to survive under extraordinary circumstances.
“My intention is to pass on as much of who I am as I possibly can to you,” Steve Gleason says in the trailer to his unborn son, Rivers.
The film originated as a passion project after his diagnosis with ALS in 2011, as a series of video journals for his son, but as time progressed, his project became larger than life.
While director Clay Tweel sifted through 1,300 hours of footage shot by the filmmakers, David Lee and Ty Minton-Small, his direction for the film continued to shift significantly.
“My first instinct was that the movie would be about a guy searching for purpose in his life, and through this tragic diagnosis was able to find himself,” Tweel said. “But I didn’t understand the intergenerational father-son story. I didn’t understand the husband-and-wife story. There were so many more layers going on.”
The documentary premiered at the 2016 Sundance Film Festival to a standing ovation with Variety describing the film as “emotionally wrenching.” The film took home an audience award at the SXSW Film Festival and a special jury prize at the Full Frame Film Festival.
Steve Gleason, who was a defensive back for the New Orleans Saints, is best known for his 2006 block of the opposing team’s punt in a game on September 25 against the Atlanta Falcons broadcast on Monday Night Football. That game was the first time the Saints had played in their home stadium, the Superdome, since before Hurricane Katrina. The play signified a “rebirth” for the city and the franchise. Everyone knows Gleason as a local hero in New Orleans; he’s even been immortalized into a statue outside the Dome.
In 2011 Gleason was diagnosed with Amyotrophic Lateral Sclerosis (ALS), often referred to as Lou Gerig’s Disease—a rare and incurable degenerative autoimmune disease that slowly robs the person afflicted of his or her motor functions, including eventually breathing—ultimately resulting in death.
“Really, my movie isn’t even about ALS. It’s about being a human rather than a kitty cat. Michel and I chose to turn my footage into a feature film because we thought viewers would see themselves in our humanity. We’re two imperfect people striving to find strength, solidarity and love under extraordinary circumstances. I believe the desire to live with purpose, despite the circumstances in one’s life, is universal. If our movie inspires anyone to live life more triumphantly, rather than hanging in there, we’ve succeeded.
When you watch our film, you’ll see elements of football—but it’s not about football. I think sports movies, in general, tend to abide by an almost clichéd storybook narrative. The journey. The struggle. The resolution. The sunset. But from my experience, real life doesn’t work like that. Real life is messy.” Gleason via Sports Illustrated
Gleason, realistic about the condition, proves that there’s a non-medical treatment for ALS. Technology. Because of eye-tracking technology, which he uses in conjunction with a tablet, he can do anything you or I can do: talk, text, conduct online meetings, watch movies, etc. Steve admits that he even tweet while pooping. Just. Like. You.
The documentary also covers the passing of the Gleason Act signed by President Obama in 2015. The bill makes speech generating devices, such as the one used by Gleason to communicate, more readily accessible for patients with ALS and other neurological disorders. It does this by making purchase of the devices eligible for reimbursement through Medicare and Medicaid.
As a documentary, the film isn’t perfect for everyone, but if it can be praised for one thing, it’s the power of filmmaking. Perhaps being from New Orleans has created a bias toward my five star rating, because other critics don’t seem to agree with the intentions of the former Saint.
“One comes to distrust Gleason‘s pathos, because the doc always appears to be selling something. It knows it’s one of those films that we’re aren’t culturally allowed to dislike, emotionally boxing us in a corner.” via Slant
Selling hope? Selling knowledge to the majority of us who are unfamiliar with ALS? Selling the Gleason Act? This isn’t the first time Slant has been asinine and missed the point of a film.
Gleason proves that the power of film-making is extraordinary, because it serves a greater purpose than to just entertain. It educates.
For more information on Team Gleason, visit teamgleason.org.