Sometimes, sports stars can seem like superheroes. Indeed, skilled athletes’ strength and talent have usually been honed to enable them to perform faster, sharper and better than the rest. However, for a post-Hurricane Katrina New Orleans, Saints’ football player Steve Gleason became more than that; he became a symbol of recovery. And yet, just a few years later, doctors gave the NFL star some devastating news.
“I have no intention to ‘hang in there’ or ‘survive.’” Gleason tweeted in July. “I intend to keep living a purposeful, productive life and do what I love.” A powerful message. And one that perhaps resonates all the more given that it comes from a man who knows he is dying.
But first, let’s rewind. In 2006 Gleason came to symbolize the recovery and tenacious spirit of an entire city when, playing for the New Orleans Saints, he spectacularly blocked a kick made by Michael Koenen of the opposing Atlanta Falcons at the Superdome. Lending the moment added significance, it was the first game to have been played there since Hurricane Katrina ravaged New Orleans.
Indeed, a nine-foot statue celebrating this moment of resilience and triumph now stands outside the stadium. It was a highlight during a football career many players can only dream of. Serving eight years in the NFL, Gleason was a star athlete and a hero among fans.
Gleason retired in 2008. And although he didn’t participate in the Saints’ 2009 Super Bowl-winning season, he was nonetheless awarded a special Super Bowl ring to mark his contribution to the team and the respect the fans had for him. Retirement, though, would bring Gleason an entirely new challenge.
Gleason began experiencing health problems in the years after his retirement. On January 5, 2011, doctors gave him some terrible news. He had developed amyotrophic lateral sclerosis (ALS) – a disease that attacks the muscles, causing a weakness that affects movement and eventually the ability to speak, eat and even breathe. What’s more, no medical cure exists for this fatal disease.
Knowing he had only years to live, Gleason began to document the changes that were happening to his body. Just a few weeks after his diagnosis, however, Gleason and his wife, Michel, would receive another piece of momentous news – news that would radically change the course of the video diaries. Michel was pregnant.
Many people would be full of fear, heartbreak and sorrow at the proposition of bringing a child into the world with the certainty of being unable to watch them grow up. The Gleasons, however, adopted an entirely different mindset – one that would see the nature and tone of the video diaries change.
His wife was aware of the difficulties that would arise from her husband’s deteriorating health. Nonetheless, she said, “Just because I’d have to help take care of him, it wasn’t a big enough reason not to have all the beautiful things a baby would bring to a family.”
But it wasn’t all about what a baby would bring. Gleason was mindful of filling a void that his death would leave in his unborn child’s life. So the videos he had begun making in order to understand the changes he was facing turned into something entirely new.
“Immediately I switched my focus,” Gleason wrote in a piece for Sports Illustrated. “Instead of introspective journals, I started recording videos that would help our yet-to-be-born son, Rivers, know who I was. I still record my memories, beliefs, shortcomings, advice and loves.”
Gleason was wary of presenting a “storybook sports dad” to his unborn child. He said, “I wanted him to see the raw, imperfect, flailing person that I am. I wanted him to see the vulnerabilities because I wanted him to know that sharing our weaknesses is how we find our strengths.”
The result was around 1,500 hours of film shot over the course of five and a half years. All of it has been edited down to a documentary named simply Gleason. But it’s not about football. It’s not even about ALS. The film is about something far more universal.
Gleason said, “My goal was to share my most real self with our son. That intimacy and rawness are translated in the film for the audience.” Gleason found that by filming life lessons for his unborn son, he was forced to follow his own advice as his health deteriorated.
“One of the themes I try to convey to Rivers as I continue to shoot video journals is acknowledge your fear, but proceed anyway,” Gleason recounted in Sports Illustrated. “I had to take my own advice as this film was being made. Acknowledge and proceed.”
The film runs through everything from the couple’s wedding day and on through Gleason’s diagnosis and all the emotions attached, starting with denial. Gleason’s wife Michel says, “He’s telling me this but I don’t necessarily believe what he’s saying.” It’s followed by Gleason’s plea to God to save him from leaving Michel alone.
The documentary shows Gleason welcoming Rivers into the world and promising the baby that his dad will be around “until you are able to stand on your own.” He adds, “It’s not going to be easy, but it’s going to be awesome.” It’s clear in the film that Gleason is a man determined to make the best of his life in the face of his worsening mobility.
Yet despite his situation, Gleason still considers himself lucky. He said, “Fortunately for someone in my position, ALS rarely affects the mind or the eyes. As a result there is a non-medical ‘treatment’ for ALS. I would even call it a cure. That treatment is technology.”
“I cannot move or talk or breathe on my own, but because of evolving eye-tracking technology, which I use in conjunction with a tablet, I can do anything an ordinary person can do: text, talk, play music, watch movies…” Furthermore, Gleason currently works with Microsoft developing programs operated by eye movement.
Gleason concludes, “We’re two imperfect people striving to find strength, solidarity and love under extraordinary circumstances. I believe the desire to live with purpose, despite the circumstances in one’s life, is universal. If our movie inspires anyone to live life more triumphantly, rather than ‘hanging in there,’ we’ve succeeded.”