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The link to the new Steve Gleason documentary sat in my email for three days before I opened it. People told me I'd love it. The reviews of the film, which won acclaim at Sundance and is now in wider release, are uniformly positive and talk about the spirit of life and hope laced through his journey. That didn't matter much. I didn't want to watch someone die of ALS in front of my eyes. I know Steve and his wife, Michel, a little, spending time with them for a story, and even that brief interaction showed me enough of their struggles to know that there wouldn't be some Hollywood ending.
The movie follows five years of Steve's life as he goes from a vibrant football folk hero for the New Orleans Saints to a man trapped in a wheelchair, unable to speak or move. After seeing his struggle up close - not only the valiant bits that raise awareness, but the awkward fights with his stressed-out wife and his son gently pushing his limp head back into place - I thought I knew what the movie would be about and how it would make me feel.
Then I watched Gleason. I was wrong.
The film opens with Steve starting to record video journals for his still unborn son, Rivers, that would teach him about love and about taking chances, about being his own person and building a campfire: things a boy needs to learn from his father if he wants to grow into a good man. Soon the cameras are around Steve all the time, as he gets his diagnosis of ALS and then starts to lose things. We see Michel see him try to swim and struggle, crying at the sight of the strong man she married actually beginning his slide toward nothing. His dad takes him to a faith healer and Steve gets down in his football stance, like he's covering a kickoff, with his hand up in the air. He takes four steps and hits the ground hard and sliding, like a big bull that's been shot. In the crowd, Michel fumes at Steve's dad for making him do this to himself. Later we see Steve speaking some of his last words before ALS traps him in a silent body, in one of the purest moments of desperation and despair ever recorded on film.
The arc is sophisticated and layered, its central thesis revolving around the things passed down from father to son, moving through generations. We see Steve try to make peace with his own father while attempting to give as much of himself as he can to Rivers. We see Steve and Michel argue. We see Steve struggle with the same things as many healthy people, just in an extreme way: He wants to work on his foundation because it makes him feel good to be helping, gives him a purpose, while Michel thinks he's not spending enough time with her and with his video journals for Rivers. That conflict drives the second half of the movie.
If reality television is the worst of the American impulse to film, and a window into the very worst of what the human animal is capable of being, then this movie and its hours of personal footage is a window into the best. It is one of the finest documentaries that I've ever seen, period. Go see it for the first time and just cry and feel empty and like there's no point in even dreaming because life crushes all of us eventually, and then go see it again so that the hope and the victory emerge from all those ashes. It's the visual version of the Dylan Thomas poem.
Everyone faces the challenges confronting Steve, only most of us deal with them slowly over seven or eight decades. All of the business of life hit him at once, and in his sped-up horror, there are powerful messages. I'm writing this in my kitchen, and my wife is outside drinking coffee on our porch, and that's where I should be, not doing a job but living my life and making sure I understand what matters and what doesn't while I still can. Those are the things you'll think in the hours after Gleason ends. It's a movie that seems, in its first scenes, to be about watching up close as a man dies, but it turns out to be the opposite. We watch as Steve Gleason rages against the dying of the light, and when it's over, we realize that continuing to fight in the face of certain defeat is at the heart of what it means to live.