FDL Movie Night: When I Walk
Tonight’s documentary When I Walk is a personal, intimate, and ultimately hopeful exploration of filmmaker and artist Jason DaSilva’s life with multiple sclerosis. Diagnosed in 2005 Jason, an award-winning filmmaker, turned the camera on himself in this unflinching and honest film.
Making a documentary about himself meant letting go of the camera–his mother, brother and friends did much of the shooting—as well as having to face after each day of shooting his gradual physical deterioration captured on camera. While asleep he would dream of running, and then when awake struggle to walk and and edit. Jason explains:
Living your life in the present while also reflecting upon it creatively, actively editing it and putting the pieces together in real time, put me in a psychological feedback loop that was tricky to negotiate.
As his MS begins to flare, Jason travels to Goa, India to visit relatives and make a short film (three of his films have had national broadcasts on PBS, HBO, and CBC; he also produced, Shocking and Awful, a film installation on the anti-Iraq war movement, exhibited at the 2006 Whitney Biennial). With his vision and strength failing, he abandons that project and returns home. There his mother encourages him to document how MS is affecting his life, reminding him that we are only here for a short time and must make the the most of it. Meanwhile his grandmother, a devout Catholic, sends him to Lourdes in hopes of a miracle.
The blessed waters of Lourdes do not provide a cure, but Jason, now on a scooter, does encounter what his grandmother will later call a miracle: At an MS support group he meets Alice Cook whose mother has MS, and the two begin dating. As the their relationship progresses, Jason asks hard questions–what will Alice do when he is unable to feed himself, as he grows progressively less able-bodied. Alice, who co-produced, co-directed and co-wrote When I Walk with Jason, rises to the challenges and the two marry and begin to plan a family.
As Jason’s mobility decreases, he learns how many places are now closed off to him and others in scooters and wheelchairs. He creates AXS Map, a website and app for those with mobility challenges, beginning in New York with a handful of volunteers who test locations’ accessibility.
When I Walk is life-affirming, poignant, and funny, a film which celebrates creativity, love and life. Jason says:
My diagnosis was not the end of the world. Instead, and with a bit of determination, it has proven to be a new way for me to see and be in the world. This was the voice and heart that emerged in the film, almost more through its own will than mine. As director, my role was to foster that spirit, to learn to adapt, and enjoy the ride.