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At the age of 34, Steve Gleason was diagnosed with ALS. Doctors gave the former NFL defensive back and New Orleans hero two to five years to live. So that is what Steve chose to do – LIVE: with purpose, for his newborn son, for his wife, and to help others with his disease.
It is very rare for a film to move me to tears, let alone so quickly, as was the case of Clay Tweel’s documentary “Gleason.” It took all of 30 seconds before I felt my eyes well up and throat tighten. I knew then that rough roads were ahead and my face may very well be a smear of what it was by the end. Even if you tend to avoid the soul-moving tearjerkers, let me please implore you to have your soul moved and tears plucked, as “Gleason,” is just as much inspirational as it is heartbreaking, showing the ability of the human spirit to move beyond a body changed and truly live and love with purpose.
Steve Gleason is no doubt an exceptional human being, a hero of New Orleans, bringing back the spirit of a city after blocking a punt in 2006. Atypical from what one may think of an NFL star, Gleason is a down to earth free spirit with a mind to travel the wilds of the world with his equally spirited wife, Michel. In 2011 their world is forever changed when the retired football player discovers he has ALS (amyotrophic lateral sclerosis), a devastating diagnosis with an outlook of 2-5 years left to live. It is also during this time they discover Michel is pregnant with their first child. Steve whole-heartedly walks into the abyss, the unknown and chooses to live and love as completely as he can while he has the time.
The diagnosis prompts Steve to create a video diary for his son, so that he may know him and know the love and hope he has for him. Relationships, particularly the relationship between fathers and sons is predominant throughout the documentary. The relationship between Steve and his father is curious. The struggle between love, anger, and understanding is apparent. There are several raw moments between the two that leave you with the feeling of your heart pushing at the walls of your throat.
The documentary is layered in such a way that it jerks you around. There are several light-hearted joyful moments amongst the more devastating. The birth of Steve and Michel’s son Rivers and the meaning behind the name and how Steve adapts to being a father, trying always to be as physically involved as possible despite his increasingly limited mobility. The darker moments are those of communication breakdown and exhaustion, when the lines of wife and caregiver are blurred and clarity of hope is smudged. But willpower is strong and the battle to live continues.
“Gleason” is not an easy film but it is nonetheless an inspiration. Steve Gleason is an inspiration. He lives for his son, for the relationships with those he loves most, and for those who also suffer from an unforgiving disease. He has made it his mission to help those who also have ALS get the treatments and technology they need to communicate with their loved ones and caregivers. You cannot help but desire to do better and be better after seeing Tweel’s documentary on an extraordinary individual who lives purposefully and defiantly against the odds.
In select theaters August 5th
