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

Published: June 22, 2014


Picture 1 of 6

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


Tags: , , , , , , , , , , , , , , , , , , , , , , , , , ,





Featured

Royal Wedding

Aga Khan’s eldest son Prince Rahim and his wife Kendra Salwa Spears expecting their first child

VANCOUVER DESI The Aga Khan’s eldest son Prince Rahim and his wife Princess Salwa (Kendra Salwa Spears) are expecting their first child, the spiritual leader…
Continue Reading »

CIVIC ELECTIONS

Surrey mayoral candidates share city visions at first meeting

AMY REID VANCOUVER DESI SURREY — Surrey mayoral candidates met for the city’s first all-candidates meeting Thursday night at SFU. Six of the seven candidates…
Continue Reading »

OTTAWA

Surrey MP Nina Grewal’s account of the shootout in Ottawa

NINA GREWAL SPECIAL TO IANS  When Canadian Prime Minister Stephen Harper was speaking at about 9.30 a.m. Wednesday in a caucus room of parliament, we…
Continue Reading »

LOCAL NEWS

CIVIC ELECTIONS

Surrey mayoral candidates share city visions at first meeting

AMY REID VANCOUVER DESI SURREY — Surrey mayoral candidates met for the city’s first all-candidates meeting Thursday night at SFU. Six of the seven candidates…
Continue Reading »

OTTAWA

Surrey MP Nina Grewal’s account of the shootout in Ottawa

NINA GREWAL SPECIAL TO IANS  When Canadian Prime Minister Stephen Harper was speaking at about 9.30 a.m. Wednesday in a caucus room of parliament, we…
Continue Reading »

Parliament hill

Editorial Exchange: Rational responses needed

NEIL GODBOUT PRINCE GEORGE CITIZEN, THE CANADIAN PRESS Canada’s innocence should have ended in 1970 with the FLQ crisis but it didn’t. It should have been…
Continue Reading »

Don't Miss...

student dead

Two dead, including gunman, in school shooting north of Seattle

DOUG ESSER THE ASSOCIATED PRESS MARYSVILLE, Wash. — A student opened fire in a high school cafeteria north of Seattle on Friday, killing at least…
Continue Reading »

attack on Parliament Hill

Ottawa shooter kicked out of Burnaby mosque two years ago

Zehaf-Bibeau was asked to leave the mosque, because he had “gotten a hold of keys and stuff from the mosque, and when he got out…
Continue Reading »

labour laws violation

U.S. company penalized for mistreatment of Indian employees working 122 hours in a week

MICHAEL LIEDTKE THE ASSOCIATED PRESS SAN FRANCISCO – A Silicon Valley company is paying more than $43,000 in back wages and penalties after labour regulators…
Continue Reading »

DESI-SOCCER

Surrey soccer captain played the U-18 national club championship using only one foot

KYLE BENNING SURREY NOW SOUTH SURREY – Kyle Sohi’s perseverance and performance in the 2014 Sport Chek National Club Championships U-18 Cup Final might go…
Continue Reading »

SURREY-FIELD HOCKEY

Barinder Rasode announces plan to develop field hockey pitch in Surrey

Third field at Tamanawis Park would cost approximately $3 million KYLE BENNING SURREY NOW NEWTON – Barinder Rasode and the One Surrey team were at…
Continue Reading »


Bollywood Latest

Stan Lee-Bollywood

Stan Lee plans Bollywood film on his first Indian superhero

VANCOUVER DESI Stan Lee, the legendary ‘Spiderman’ creator, is reportedly planning his Bollywood entry with a film on his Indian superhero character ‘Chakra: the Invincible’….
Continue Reading »

KANGANA RANAUT

Even my parents think I am weird, says Bollywood ‘Queen’ Kangana Ranaut

HINDUSTAN TIMES Kangana Ranaut has always made unconventional choices, be it her movies or the way she dresses. And the actor says she’s happy the…
Continue Reading »

Happy New Year-Bollywood

Happy New Year: Mandatory ‘formula’ and all those old Bollywood references

HINDUSTAN TIMES Film: Happy New Year Cast: Shah Rukh Khan, Deepika Padukone, Abhishek Bachchan, Boman Irani, Sonu Sood, Vivaan Shah, Jackie Shroff Director: Farah Khan…
Continue Reading »