Sundance: Vancouver filmmaker bravely, honestly documents life with multiple sclerosis
Jason DaSilva’s When I Walk makes its debut this week at the 2013 Sundance Film Festival.
Jason DaSilva’s When I Walk makes its debut this week at the 2013 Sundance Film Festival.
PARK CITY, UTAH — Jason DaSilva always wanted to come back to the Sundance Film Festival, but he never thought he’d do it in a wheelchair.
A graduate of Vancouver’s Emily Carr University and a veteran director of short films, including Olivia’s Puzzle, which was invited to Sundance in 2003, DaSilva’s life took a turn for the tragic when he was diagnosed with primary progressive multiple sclerosis in 2006.
“I was on holiday with my family and I couldn’t get up.”
We actually see this moment in the sand in his film, When I Walk, which will screen at Sundance as part of the documentary premieres section.
At the time, DaSilva was a 25-year-old man in the prime of his life. He had a string of pretty girlfriends, a promising career in movies and a cool apartment in Vancouver’s West Village.
But everything in his life changed. Very quickly.
From the moment DaSilva’s legs collapsed beneath him on the beach in St. Maarten, he found himself a prisoner on a roller-coaster without a safety bar.
“I knew that some of the symptoms would come on a lot faster because of the type of MS I have,” he says. “But I had no idea that it would happen as quickly as it did.”
DaSilva figured it would be a private struggle, but about a year after he learned why he was having headaches and vision problems, he realized his story wasn’t entirely unique. If he documented his journey, honestly and openly, he decided, others in a similar position wouldn’t feel so alone.
The result is a film that takes the viewer on a surprisingly inspirational ride as we watch DaSilva deal with medical appointments and his deteriorating ability to put on his own clothes, feed himself and see the computer screen before him.
We also feel something much deeper, and that is the young man’s perception of himself.
“Before I was diagnosed with MS, when I was in my 20s, I used to feel frustrated if someone in a wheelchair got on the bus because it would take so long…”
DaSilva grins from his shiny red scooter as he says this, and looks over to his wife, Alice Cook, who adjusts his jacket collar with a gentle but determined touch.
Their burgeoning romance is also featured in this honest portrait, and explores what life is like for the significant other of a seriously incapacitated person.
“To be honest,” she says, “I was terrified. Even on the day we got married, I was terrified because I had no idea what the future would look like with Jason. But I never counted on falling in love, and when you love someone, you want to be there for them.”
The film shows us what that looks like in real terms, and no surprise, it’s a lot of work.
From getting Jason dressed to relieving himself, from putting the toothpaste on the toothbrush to helping him navigate the streets of New York City, Cook says there were times when it was just too overwhelming. But with honesty and compassion, they say they have learned to take every day as it comes.
“I think when you see people in a wheelchair,” she says, “you think they’ve been dealing with their disability for a long time and they kind of know what to do. But now I know that every single day is a challenge. You just never know.”
The couple faced so many barriers they decided to make it the focus of their next project, an interactive app called AXSMAP. Using GPS and data collected from people on the ground, as well as people in chairs, the application aims to let people know the most accessible places in their hometown by describing elevators, ramps and bathroom access.
The project has already garnered support from Telefilm and other Canadian funding agencies, which makes DaSilva proud — and highly appreciative of Vancouver’s accessibility as a metropolitan centre.
Though raised in the U.S. and Canada with dual citizenship, DaSilva returned to Vancouver for a two-year stint to complete his graduate studies at Emily Carr.
“I think creative expression really has the capacity to free you,” he says. “I used to draw and create comic books, but I can’t use my hands so well anymore. So I make films, and I really think it’s the best medium for me.”
Turning the camera on himself, he says, was one of his biggest hurdles.
“I never planned to put that image of me in (St. Maarten) in the movie. But it was the beginning.”
For the next seven years, he had no idea how it would end — all he knew is that the very act of making the film gave him a much-needed sense of purpose.
“I had to watch myself get worse as I was editing, and eventually, I had to trust someone else to help me complete the film.”
At times, neither he nor Cook figured they would ever wrap.
“Last year was the worst,” Cook says. “We thought we could finish it, but we weren’t happy with it. We didn’t like it.”
As a climate change specialist with a degree from Stanford University, Cook never thought of herself as a creative person, but she soon became DaSilva’s right hand — as well as eyes — as she became a co-editor as well as producer, writer and on-camera subject.
“Once we realized this was a movie about making a movie,” she says, “things got a lot easier.”
DaSilva smiles. “This is a movie about triumph over tragedy. We all have struggles in our lives, so you can’t get too down about it,” he says.
“Life is short. Tragedy happens to everyone, and you just have to find a way to move forward, no matter how hard it can be.”
When I Walk has a broadcast date set for this year with PBS, and is currently seeking theatrical distribution at the festival. The Sundance Film Festival runs to Jan. 27.
