If the Ice Bucket Challenge two summers ago was many Americans’ light-hearted, trendy introduction to amyotrophic lateral sclerosis (ALS), this summer’s buzziest documentary moves viewers another searingly honest step forward in truly understanding what this diagnosis means.
Gleason, which opened in limited release at the end of July and in much wider release two weeks later, is the story of Steve Gleason, a former football player who played most of his career in New Orleans. Gleason became a hero in that town after making a memorable play in September 2006, during the team’s first home game after Hurricane Katrina. He retired from the National Football League in 2008.
Several years later, Gleason, then just 34, began experiencing strange symptoms, such as tingling in his back and extremities. Six weeks after being diagnosed with ALS, he and his wife, Michel, found out they were pregnant with their first child.
Aware of the life expectancy for patients with ALS and already starting to lose balance and strength, Gleason began creating a video journal to communicate life lessons to his child — a son named Rivers — while he could still speak.
“My number one focus and purpose,” Gleason says in an early video entry, “is to share with you who I am. My intention is to pass on as much as I possibly can to you.”
I won’t worry about spoilers, because if you work in complex rehab technology, your job is the spoiler. You won’t be surprised by Gleason’s terribly swift progression, or by the eye-gaze communications device, high-level power chair and ventilator he eventually uses.
This isn’t a football film, though certainly Gleason’s friendships with former teammates and his fame in New Orleans, where he and his family still live, figured prominently in fundraising and the early successes of Team Gleason. The foundation focuses on both finding a cure for ALS and ensuring access to technology that people with ALS need to maintain a high quality of life. “Most of what ALS takes from people, technology can give back,” Gleason says, and later, Rivers is shown giggling on his dad’s lap during a power chair ride.
Gleason is a love story — between new parents and their young son, between husband and wife, between Gleason and his father, with their challenging past. The film is unsparing in what it’s like to live with ALS — a bathroom scene is particularly painful. But it’s also full of everyday humor: Gleason can’t contain his amusement at his father’s reaction to naming the new baby Rivers.
Here is an ordinary family carrying on in extraordinary ways, while wishing they didn’t have to. “I don’t want to be a saint,” says Michel, who has taken on the bulk of Gleason’s caregiving. “I just want to be a real person.”
For people less aware of ALS, Gleason is an honest education, so much so that on the eve of the film’s wider release, Steve Gleason made a statement via social media to ensure wavering film-goers that his life is a happy one.
“People will say it’s such a sad, tragic story,” he says in the film. “But I believe my future is bigger than my past.”
Here’s hoping movie-goers take a chance on Gleason, that they see themselves in this family, and that greater awareness moves research and technology access forward.
