Carmel Magazine

CM Nov 1, 2016 Barrymore HO16_DigitalEdition

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could no longer hold a camera. The film features tender moments, such as the birth of their son, Rivers, and Gleason's fatherly lessons on rela- tionships, spirituality and adventure. It also docu- ments the professional athlete's despair over his physical decline, and Varisco's struggles as a care- giver, partner and parent. "Steve and Michel said, 'If we're going to do this, we need to be real and honest about the emotional highs and lows,'" says Fujita. "The footage is intimate, raw and very in the moment." This summer, Steve and Michel stayed in Carmel Valley between film premieres in Los Angeles, San Francisco and Seattle. It was their first visit to the Fujita home since early 2011, shortly after Gleason's ALS diagnosis. "To have Rivers swimming with my girls, while Steve and I watched, was really special," Fujita says. "We drank beer like we used to—but with me pouring beer down his feeding tube—and after we put the kids to bed, we'd all stay up late and tell stories…I didn't know this would ever be possible." Today, Gleason breathes with a ventilator and communicates with eye-tracking technology. And he approaches life with the same determination and lightheartedness displayed throughout the documentary. In August, he addressed concertgo- ers while on stage with Pearl Jam at Chicago's Wrigley Field. On Twitter, he shares personal per- spective, talks football and frequently cracks jokes. Gleason works closely with researchers at Microsoft to improve the tools available to ALS patients, and he remains active in Team Gleason, a nonprofit that raises awareness and helps individ- uals with ALS live more fully and independently. A team of caregivers assists Gleason and his family with day-to-day needs, and his physical condition has essentially plateaued. "The digression is mostly over. This is what life is going to be like, and now it's about getting accustomed to that," Fujita says. He recalls a scene in "Gleason," where Steve and his cousin discuss how old a child must be to have meaningful conversations with a parent. As Gleason imagines his own future, he fears that he'll never have significant talks with his own child. "But now, Steve is having those real conversa- tions. He's picking up Rivers from school, asking him how his day was, and coaching him up in baseball and soccer. I don't think any of us could have predicted those things," Fujita says. "Being an active participant in fathering Rivers is a big reason why Steve is happy and feeling like he's beating this thing." To support Team Gleason, and to learn more about the organization's initiatives, visit www.team- gleason.org. "Gleason" will be available on DVD on November 1, 2016, and the Amazon Prime Video release follows on December 29, 2016. The Gleasons at the documentary premiere. Steve started filming to capture memories for his son. Fujita and some friends started outlining movie ideas in 2013, and they saw "Gleason" through to its 2016 Sundance Film Festival debut. Gleason and Fujita at Machu Picchu. Fujita says that Gleason is an active parent to son Rivers, which brings him joy and purpose despite ALS. Photo: Suzanne Alford Photo: Shutterstock 142 C A R M E L M A G A Z I N E • H O L I D A Y 2 0 1 6

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