The Sundance Film Festival has become so enormous — with hundreds of choices — that it can be frustrating trying to select films to see that justify the endless lines, the icy Park City streets, clogged traffic, long bus rides and interminable waits.
But each year a Sundance moment eventually arrives that generates such an emotional response from the audience that it transcends the event in a special way. After several days of watching disappointing films, my Sundance moment finally arrived in the form of a movie about a former NFL player's struggle with a body-altering disease.
Gleason tells the story of former New Orleans Saints defensive back Steve Gleason, who at age 34 was diagnosed with Lou Gehrig’s disease (ALS) and told he had two to five years to live. Shortly after being diagnosed, Gleason and his wife, Michel, discovered they were expecting their first child.
His video journal that begins as a gift for his unborn son is the genesis for this spectacular documentary.
Gleason is a significant film on several levels. It is an impactful story about ALS and how it affects families. It is a story about the relationship between three generations of fathers and sons. It details Gleason’s childhood and football career, and at the same time takes a deep and nuanced look at the sometimes challenging relationship between Gleason and his father which is tested by his father’s fundamental religious beliefs about how Gleason should view his disease.
More importantly, the film shows the heartbreaking challenges Michel has to deal with, including being a loving wife, mother to an infant, and caregiver to a professional football hero who suffers from this horrible disease.
Gleason is not a soppy film, but love does triumph, as it should. This family becomes an extended one, as friends, former teammates and caregivers join with them to create a foundation and lobby for improved services for ALS patients.
This is not an easy film to watch and includes graphic scenes of how the disease robs one of personal dignity — others must tend to feeding, bathing and enemas. But at its essence, it is a transcending tribute to a couple’s love for each other, and a father’s love for his son.
At the conclusion of the film, the audience, many of whom were in tears gave film maker Clay Tweel and his crew a sustained standing ovation — one of the longest round of cheers I have ever heard at Sundance — as Steve Gleason, strapped in his wheel chair, and his wife came to the front of the auditoirum.They answered questions from the audience — Steve replying on a digital voice machine that he operates with the pupils of his eyes.
I asked why Steve’s mother was seen only at the film’s beginning, not to be seen again. The answer was that this film was about fathers and sons. Afterwards, a woman approached me and introduced herself as Steve Gleason’s mother, and we had an emotional and meaningful conversation. Such is the magic of Sundance.
Steve Gleason replied to questions from the audience via a device that allows him to blink the answers with his eyes.
