You don’t have to be a fan of the Saints to remember Steve Gleason’s blocked punt against the Atlanta Falcons in 2006 — a moment so huge for the city, post Katrina, it was turned into a bronze statue that sits in front of the Superdome today. But that’s nothing compared to the work Gleason has been doing since then as a father living with amyotrophic lateral sclerosis, or ALS.
Just weeks after he was diagnosed in 2011 Gleason learned that he was going to be a father. The progressive nature of the disease meant that Gleason will ultimately lose control nearly every muscle in his body, save for his eyes. So, he began keeping a video diary to ensure his son, River, will know who his dad was long after the disease takes his life. If that sounds depressing, it’s not; even as his body betrays him, Gleason crisscrossed the country, checking off bucket list items like hanging with Pearl Jam and making things right with his estranged father. As his disease progresses, he gets involved in developing technologies to help people with ALS. That footage has been compiled into the new film Gleason, which opens this weekend.
Since premiering at Sundance, the movie has wracked up awards and honors, including an audience award at South By Southwest. ESPN calls the documentary “incredibly powerful, moving,” and even “gut-wrenching” at moments — but, as a father, maybe your gut could use some of this particular kind of wrenching.