by director Clay Tweel
“The most terrifying fact about the universe is not that it is hostile but that it is indifferent; but if we can come to terms with this indifference and accept the challenges of life within the boundaries of death…our existence as a species can have genuine meaning and fulfillment. However vast the darkness, we must supply our own light.”—Stanley Kubrick
This is a quote that I fell in love with a decade ago, and as I’ve gotten older it has become a bit of a personal mantra. From the moment I saw the first frame of footage that would eventually become my new film Gleason, I knew that this quote would be my North Star. Steve Gleason is a former football player who was diagnosed with ALS just a few weeks before he found out his wife was pregnant. The poetic chaos of the universe reveals itself in afflicting this free spirit of a man, whose life was based very much in his physical being, and will now slowly be drained of that quality that defined him to many. Steve, who lives beyond the boundaries of definitions, confronted this disease with light in his heart in a way that is genuine and uplifting.
The first time that I met with Steve to discuss telling this story, he told me that he wanted to portray the daily reality of what ALS does, not just to the patients, but to the family as well. However, while talking with him and his wife Michel, I could not get over their constant joking, cracking wise with nurses, and overall positive attitude. Eventually, as I dove into the nearly 1300 hours of captured footage, it became very important to me to mirror not only the emotional journey of this couple, but to somehow have the audience experience the joy of what it’s like to be in the presence of these two as well. I knew that if Steve and Michel could be portrayed as closely to who they are in real life, we would have a story that would go much deeper than any narrative about football or about an illness.
The raw honesty and vulnerability of Steve and Michel is what elevates this movie beyond your expectations. They let us in so deeply that we are able to see a portrait of the human spirit that is unquestionably dense, and filled with so many emotional complexities, that each audience member can take a different message away from the movie. To be honest, this was not something that was overtly done on my part in crafting the film, but merely a byproduct of who Steve and Michel are. As Steve often says, “Everyone faces tragedy and adversity, but most often, that is where we find our power and meaning.”
Just as his punt block play gave the city of New Orleans hope, we hope that this film will be a light in the storm for all who watch it.