Film

'Gleason' documentary explores the spirit of a family battling ALS

by Kaori Shoji

Special To The Japan Times

In 2006, professional football player Steve Gleason made one of the most dramatic plays in NFL history when he blocked a punt that led his team, the New Orleans Saints, to its first home victory following Hurricane Katrina. Five years later, he was diagnosed with ALS (amyotrophic lateral sclerosis) and made the decision to document his battle with the disease on film.

Directed by J. Clay Tweel, “Gleason” (which opens in Japan on Aug. 19 under the title “Gift — Boku ga Kimi ni Nokoseru Mono”) is an account of what the former athlete and his family have gone through over the past five years as Gleason’s physical condition deteriorated, but his resolve strengthened.

“My intention is to pass on as much of who I am, to you,” Gleason says at the beginning of the film to his (then) unborn son. His son, Rivers, is now 6 years old. For four of those years, Gleason has been confined to a wheelchair and this is just one of the reasons the documentary is best watched with a box of tissues on hand.

Gleason’s wife, Michel Varisco-Gleason, was in Japan earlier this summer to promote the documentary. The film depicts her as a physical and mental powerhouse, never wavering from a fierce determination to support her husband while raising their son to respect people from all walks of life. Was she always like this?

“Nope, I can’t say I was ever like this,” Varisco-Gleason says. “I’m the youngest of my siblings and grew up as the only girl in a healthy, fitness-oriented family. It was hard for me to relate to people with illnesses or in wheelchairs. I would be in a parking lot and see a wheelchair parking space and not even think about what that meant. Now, I know exactly what that entails — for everyone involved.”

When they first met, Varisco-Gleason said that her husband was “the healthiest, fittest person I had ever come across, just so in control of himself.” She had to watch his steady decline, but “seeing how he handled the ALS almost negated the pain of it. Steve told me this was a journey and an entirely new chapter in his life, and I believed him.”

Steve is now the head of a foundation called Team Gleason, which helps spread ALS awareness and raise funds for those with the disease and their families. Varisco-Gleason says their biggest achievement so far is the Steve Gleason Act, which was signed into law by U.S. President Barack Obama in 2015. It grants patients suffering from communication disabilities access to speech-generating devices that are very expensive without insurance. Gleason himself speaks through this device, which tracks eye movement and translates them into words.

“ALS is not the end of the world,” Michel says. “There’s no cure yet and it’s nearly always fatal but, ultimately, the option to fight it and to go on living is up to the patient.”

In these five years, Varisco-Gleason has worked with her husband and the film crew, gone on a family trip to Machu Pichu in Peru and describes her life as “an intense learning experience, every single day. It’s just as Steve said — it’s a journey.”