From cane to walker to wheelchair: Renowned Vancouver filmmaker turns camera on his battle with MS (w/ gallery)

Published: June 22, 2014

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Vancouver filmmaker Jason DaSilva is pictured in a still from his autobiographical documentary, When I Walk. Submitted photo.

LARISSA CAHUTE
VANCOUVER DESI

In his early 20s, Jason DaSilva — a graduate of Emily Carr University of Art and Design — was living “the high life” in New York City.

He moved from Vancouver to New York when his short film Olivia’s Puzzle took off, premièring at the 2003 Sundance Film Festival.

“I was 25 years old, living the bachelor’s life in New York,” DaSilva, now 35, said from his home in Manhattan. “I was, like, honestly a hotshot.”

“I was living the high life of just being around New York, going anywhere I wanted, big important meetings … the world was my oyster.

“I could go on and on,” he said, hesitating slightly as he reminisced about “what life was like before” he suffered from primary progressive multiple sclerosis.

His illness, diagnosed shortly after that 2003 première, progressed so quickly that today he’s confined to a wheelchair and relies on medical aids and technology such as dictation software for general computer use.

But in spite of his debilitating condition, he found himself back at Sundance last year, this time for a heartbreaking autobiographical film in which he turned the camera on himself.

When I Walk, which makes its national broadcast debut on PBS Monday night, is a feature-length documentary — a “labour of love” — that DaSilva shot over seven years, documenting his body’s quick and inevitable decline from able-bodied to disabled as the incurable disease took over.

The film follows DaSilva from the beginning stages of the almost hidden neurological disease to his daily battles with its effects on his mobility, vision and speech.

He opens up about initial periods of false hope that his case might be different. He logs hours at the gym hoping to strengthen his weakening and unpredictable limbs, and travels as far as India and France for experimental and religious treatments.

But the disease always wins.

“I was just getting worse and worse,” said DaSilva, his speech now slow and deliberate. “It was really discouraging having to go from cane to walker to wheelchair.”

His mother, Marianne D’Souza — seen as his support system in the film — admits it was difficult to stay positive as she watched her oldest son deteriorate.

“He was such an active person,” D’Souza said from her home in Delta. “If he wasn’t moving and socializing with friends, he was sitting and working on his sketchbook.”

“The sad thing is his vision is going and … he can’t do much with his hands any more.”

But as she catches her “emotions (spiralling) downward,” she changes pace: “We all have our destinies. We might not be happy with it, but … we just have to make the most of it,” she said, sounding more like the tough-love mother in the film.

But When I Walk isn’t a lesson in the heartbreaking realities of MS — “it’s a story of triumph over tragedy,” said DaSilva.

“I want people to think about how it relates to their own life,” he said. “(And how) the challenges in their life are really things that can be dealt with.

“As my symptoms get worse and worse, I find ways to supplement it,” DaSilva said, adding that he now has interns to help with filmmaking, and technological devices to help him handle everyday needs. “I just have to find new ways to function in the world.”

But, just like the film — which is often delivered with a surprising comedic edge — DaSilva is brutally honest, and admits he can’t triumph in this tragedy.

“I don’t think it’s something that I’ll ever be able to come to terms with,” he said, adding that he still dreams of walking or running, only to awake to his painful reality. “At this point of being 35 I’m not at the point of acceptance.

“There’s obviously some things that I’ve accepted … but I’m not about to accept what I’m going through right now at all.”

But his story takes an unexpected and hopeful turn when he meets his wife and film partner, Alice Cook, at an MS support group. Cook not only helps with his filmmaking, but also with the development of AXS Map, an online tool and app they launched for people to log wheelchair-friendly locations.

“Even in the darkest moments — there’s hope,” said DaSilva. “I can continue with my life and continue being creative and in the film I found my partner, we have a kid now, which is really great.”

“I can find ways to find solutions … and make it easier for myself and for others,” he added. “I can redefine myself and keep going.”

When I Walk airs on the PBS documentary series POV at 10 p.m. Monday and will be available to stream online afterwards, as well as on Netflix in Canada by July.

lcahute@theprovince.com
twitter.com/larissacahute

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