Director Clay Tweel Shares A Story Of Hope In ‘Gleason’
The documentary Gleason by director Clay Tweel was picked up at the Sundance Festival in Utah this past January. It is a story about former New Orleans Saints safety Steve Gleason and his wife Michel Varisco Gleason and their journey through life after he was diagnosed with ALS. Tweel discusses that his personal life drew him to Gleason’s story and the inspirational message of the documentary with uSports.
Tweel is known for The King of Kong: A Fistful of Quarters and Print The Legend and has now created a documentary that addresses a neurological disease, something that he thinks about every day. Tweel’s oldest sister has Multiple Sclerosis (MS) and his father has been Muhammad Ali’s lawyer for the last thirty years.
“That connection to having a sports hero that’s kind of living for something larger than themselves, and having this incredibly strong wife was something that I had already seen in my own life through them. So I felt like in a unique position to tell the story of Steve and Michel,” he said.
Tweel saw some footage of the story a couple of years ago and wanted to help.
“I immediately jumped at the chance to be a part of it and I flew down to New Orleans to talk to Steve and Michel and give them my opinion of what I thought this story could be and also relate some of the more personal connections I had,” Tweel said.
Gleason played with the Saints from 2000 – 2008 and is best know for the blocked punt in 2006 against Atlanta Falcons punter Michael Koenen. The ball was recovered by Saints cornerback Curtis Deloatch in the Falcons’ end zone for a touchdown. The block happened in the first game back after Hurricane Katrina had decimated the city and symbolized recovery for the New Orleans.
Gleason was diagnosed with ALS in 2011 at the same time his wife Michel found out she was pregnant. Michel gave birth to their son Rivers Gleason in October 2011 and since then Gleason has been making video journals for his son, giving advice and teaching him lessons in the event that he passes away before his son is old enough to understand. One of the amazing aspects of the documentary is that even though Gleason is physically incapacitated, he gets more done each day than an able-bodied person, Tweel said.
“He’s doing stuff with his foundation or still continues to write journals, even today, for Rivers or he’s traveling around,” Tweel said. “He went last summer I think to meet with the engineers at Microsoft … so you know he’s still very much engaged, very much accomplishing living a purposeful life which I think is part of the inspirational side of the story.”
The Gleason Initiative Foundation is a non-profit organization that is active in trying to find a cure for and increase public awareness of the disease. The Foundation has opened the Team Gleason House for Innovative Living in New Orleans and it is the second of it’s kind in the world. The residence has leading edge technology equipment and services so people living with ALS can be as independent as possible.
Tweel wanted to respect the vulnerability of the situation and detriment of the disease, but show the reality of how difficult it is living with ALS.
“They let me go more places than I think the normal person would, but you know, for me, as a film maker I think that there’s a responsibility to try to tell a story that is as truthful as possible and that is doing what Steve’s original purpose was besides recording himself for Rivers, which was to have this movie be detailing the kind of daily realities of what it’s like to live with ALS and how that affects him and the people around him,” Tweel said. “I think Steve and Michel are unique in the way that they’re able to, with great clarity, talk about what they’re feeling as they’re going through something. Steve, Michel, myself had to have a dialogue and collaborate a little bit so that no one was going to feel uncomfortable about the movie coming out.”
This documentary will have viewers feeling all different type of emotions, but the big picture Tweel wanted to portray is a story of hope. The story transcends sports to have viewers relate to the theme that finding something to live for is a life worth living.
“It’s a movie about the human experience and it’s a movie about resilience of the human spirit. There are highs, there are lows, there’s tragedy and comedy, and they’re often mashed up together all in one and that is what it’s like to live on this planet and exist,” he said.