Steve Gleason was an unlikely football star: too small to do what he did, he did it anyway, for the New Orleans Saints. It was the NFL that brought him to New Orleans but it was falling in love with a free-spirited local girl named Michel that kept him there beyond his retirement in 2008. They soon found themselves expecting a baby, which would be a happy occasion except that about 6 weeks prior Steve was diagnosed with ALS.
ALS, or amyotrophic lateral sclerosis, is a neurodegenerative disease where the nerve cells that control your muscles die. The brain can’t talk to muscles, leading to a loss of mobility, loss of speech and eventually the ability to breathe. Everything is still right in your head though, so you’re still smart and alert and you see everything happening to you, helpless to do anything about it. There is no cure. It is fatal, and will likely be so within 2-5 years of diagnosis.
Within months, Steve is walking and talking with noticeable problems. As Michel’s belly grows with their baby inside, he starts keeping a video diary so that one day his unborn child may know him.
The documentary is bittersweet; the Gleason family experiences highs and lows, and no matter what we hear the clock ticking. As hard as it is for us to watch him deteriorate so quickly on film, to see that hardship mirrored on his wife, Michel’s, face, is just agony. Steve seems determined to share his struggle honestly, even when that means admitting that he’s trying to live up to this banner of ‘inspiration’ and ‘hero’ that the media has ascribed to him and not always knowing that means.
He does, however, establish the Gleason Foundation, which focuses on service and equipment. He felt that much of what ALS takes away, like speech and mobility, technology can give back. And while that’s true to an extent, it can’t quite account for everything: not time, not life. But the foundation gives him purpose, and he’s certainly in the position to bring awareness and to raise money for this disease.
It’s sucky to watch this movie. It’s hard. But as Steve himself says, it’s sad but it’s not all sad. And maybe it’s those moments of not-sad that we need to attend to: the hope, the faith, the optimism, the acceptance, and certainly the closeness and love of this family. And as difficult as it is, it’s also an amazing piece of film. It’s raw and emotional and real. As a famous athlete and the face on a poster on many bedroom walls, many would have called him a hero. But giving a voice to those who have lost them? That’s heroic. His wife’s caregiving? That’s heroic. This film has the power to provoke the hero in all of us. I can’t recommend it enough.