There are not many films that will ever be as raw and honest as "Gleason."
The 110-minute U.S. Documentary entry at this year's Sundance Film Festival pulls back the curtain on the devastating effects that amyotrophic lateral sclerosis (ALS -- or as it is commonly known, Lou Gehrig's disease) can have on a family. It also shows how one man with an indomitable spirit -- surrounded by friends and family who share the same vision -- can attempt to meet the challenge one day at a time.
As Steve Gleason, the one-time New Orleans Saints special teams star, brutally states as his health gradually deteriorates in the film, "I think it's crazy that I can go from a hero to having to be helped on a toilet with my pants full of (crap)."
It is the constant juxtaposition between mental toughness and physical helplessness that makes Gleason's battle so gripping.
"For me, one of the lasting impressions of this film is the notion that sometimes heroes are made from sharing their vulnerability as much as they are from showing off their strength," said director Clay Tweel in an email interview. "Steve and (his wife) Michel handle their situation with grace and integrity because they can communicate their emotions with candor while going through some of the toughest challenges imaginable. In that way, through overcoming adversity, they become heroes for others."
Gleason was a special teams stalwart through eight NFL seasons with the Saints -- but he is best known for blocking a punt that was recovered for a touchdown against the Atlanta Falcons on Sept. 25, 2006. Why that one play? Because it was the first score in the first game at the New Orleans Superdome after the team had been displaced for 21 months following the devastation of Hurricane Katrina. Gleason's play was a rallying cry for renewal -- both for the city and the franchise -- and the Saints went on to unexpectedly enjoy their best season to date.
Having retired from the NFL in 2008, it was in January 2011 when he was first diagnosed with ALS.
Steve and Michel decided to have a child while they still could, and Steve began filming video blogs of himself imparting his thoughts and wisdom to his future child. This practice eventually led to the decision to let Ty Minton-Small start filming the family just days before their son, Rivers, was born. A little while later, David Lee joined the film crew and the initial team -- along with caretaker Blair Casey -- was intact.
Speaking at the post-premiere Q&A, Michel had to laugh when asked about the decision to allow the filmmakers into their lives in such a personal way.
"The decision to do it? I don't even think I decided to do it," Michel said. "Steve decided to do his journals and then ... Rivers was born and (Ty and David) just started living with us and filming us. I was the caretaker, and I just wanted people to help me. So having the camera around, that was fine. I said, 'You can film me, I just want someone to help.' And David came around and he became another person to help, and they were like my brothers, and Blair was already there. The whole filming part I don't think I even thought about, it just became a part of our life. This whole (documentary) thing came later, I was kind of clocked out by then and let it happen. But as it started, it just kind of happened organically."
Gleason brings his underdog NFL survivor mentality to his fight against ALS, first by participating in physically challenging events -- such as a combined running/swimming race and also a hike to Twin Peaks in San Francisco -- even as the camera inevitably captures his body's steady deterioration.
Through it all the video journals he records for Rivers are the continuing thread that let us share Steve's thoughts and worries through the process. Additionally, his wanting to record and share everything for his son also opens up old wounds and new relationship issues with Steve's own father.
In addition to highlighting the great love between Steve and Michel, "Gleason" is a father and son story. Throughout the film, Steve worries about being able to share himself with his son. One of the best methods for tracking the passage of time in the documentary, in fact, is the dual gauging of Rivers' growth and development against Steve's physical decline.
"Shortly into the editing process, we found that we could show the crossing of paths of development in Steve and his son," said Tweel. "While Steve lost more and more of his capabilities due to ALS, Rivers was growing up and learning how to master the very same functions that his father was losing. Additionally, it was a great way for us to reinforce the idea of the juxtaposition of tragedy and hope that is so prevalent throughout the film."
Steve's fight has been long enough, that he reports that he does have meaningful conversations with Rivers, who is now 4. Steve communicates through an eye-controlled voice-response keyboard. The words are recorded in his own voice.
"My focus in life revolves around trying to be the best father and husband that I can possibly be," Steve told the audience following the premiere. "Really, my initial impulse to pass myself on to our son Rivers is as strong as ever. I still write 10 journals every month. And now that Rivers is older, we're able to really connect to each other. I'm teaching him to spell on my keyboard. And we have legitimate conversation. I plan to continue and try to teach him how to be a good man."
Steve, always a free spirit, remains loquacious. His pride in his family, teammates and friends, was obvious in the post-screening Q&A session, as he was literally beaming sitting in his motorized wheelchair, even though he has been rendered unable to move.
When asked about what positives he has taken from this entire journey, he immediately mentioned his son.
"The absolute beauty that is our son Rivers," he said, before moving on to his wife and extended family of friends. "Without a doubt, the most positive development throughout this process has been the support and love we have received from friends. ... To see this and to feel this as a person, and to feel this as a family -- it's humbling and it's overwhelming. We're very grateful."
After Sundance, what is next for Team Gleason?
"Mostly, I am talking to a handful of ALS patients," Steve said, "and we share with each other our plans to rule the world with Earth people as our underlings."
The room erupted with laughter.
"He's not joking," Michel said.
The Gleasons started a nonprofit charitable foundation that not only helps those suffering with the disease but also seeks potential cures. (Learn more at TeamGleason.org.)
Those were also reasons the documentary needed to be so honest and real.
"I think it was important to us to show the audience the true realities of ALS," said Steve. "That every day, ALS families go through these moments. It was important that it was well represented. I think that we as a group were able to do that."
Tweel admitted to a few pre-screening jitters prior to the documentary's premiere. Not to worry -- the crowd was fully onboard for the entire ride.
"It's extremely gratifying to have such an emotional reaction from that big of an audience," Tweel said. "We were all a little nervous before the movie began, but as soon as we heard the laughing and felt the tears, we knew the audience was connecting to Steve and Michel's story in the way we all intended."