The postmodern practice of recording every aspect of your daily life for posterity certainly has its downsides, but it’s also what makes a movie like Gleason possible. The documentary follows the everyday routines of former pro football player Steve Gleason, from his days as a college linebacker through his career with the New Orleans Saints up until the present day. Only a brief portion of the film is devoted to Gleason’s moment of gridiron glory during the Saints’ highly symbolic comeback after Hurricane Katrina, though. Most of it is dedicated to Gleason’s struggle with ALS, also known as Lou Gehrig’s disease, a progressive neurodegenerative disease that gradually weakens the muscles, affecting a person’s ability to walk, talk, and eventually breathe. Gleason was diagnosed with ALS in 2011, and he was given two to five years to live.
Gleason’s diagnosis coincided with the discovery that his wife was pregnant, inspiring him to start keeping video diaries for the unborn son who would know him as a completely different person, if at all. These recordings make up the majority of the film, along with a smattering of news footage and talking-head interviews to fill in the gaps before Gleason started keeping video records of his life. The footage starts out relatively lighthearted, showing a tan, healthy, happy-go-lucky Gleason enjoying hippie-jock pursuits like jamming out to his favorite band, Pearl Jam, and participating in triathlons where one of the events involves chugging a beer. Soon, though, his gait becomes awkward, and he has trouble running, then trouble walking. Then his speech becomes noticeably slurred. Soon, Gleason is confined to a wheelchair and speaking through an electronic device, à la Stephen Hawking.
As an attempt to raise awareness of what it’s actually like to live with ALS, Gleason (as well as Gleason) should be lauded. Some of this footage is painfully intimate, not turning away even when Gleason is unable to perform basic bodily functions by himself. (A scene where he describes the surreal, humiliating experience of soiling himself after appearing in front of cheering crowds at the Superdome is especially vulnerable.) Even as his condition deteriorates, the film doesn’t shy away from showing how the disease affects Gleason’s relationship with his wife—who’s physically and emotionally exhausted from having to care for a helpless baby and nearly-as-helpless man at the same time—and deeply religious father, who at one point takes the family to a faith healer in another painful-to-watch scene.
Amid all this intimacy, however, there’s one thing that isn’t spoken of with the same degree of openness, and that’s the privilege that allows Gleason to live as well as he does. Not only does he not have to work, neither does his wife, and they have a family friend around as a presumably paid full-time caretaker. He can afford the best treatments and technologies and—by the end—even to extend his life, because he’s a well-off former NFL player. Most patients don’t have these luxuries. This unspoken undercurrent comes close to the surface a few times, but is never really explored, especially in the feel-good sequences showcasing Gleason’s work with his foundation—which, it must be said, did fight to have communication devices for non-verbal ALS patients covered by Medicare and Medicaid. Perhaps it’s unfair to expect one person (or documentary, for that matter) to tackle all of this at once, especially when they’re sharing their story in such an intensely visceral way. Still, it’s this same privilege that allows Gleason to be an essentially uplifting, rather than depressing, story. It raises the question: If Steve Gleason wasn’t a famous name, would we still be watching?