Jason DaSilva was just 23 when one of his earliest films, a short called “Olivia’s Puzzle”, screened at the 2003 Sundance Film Festival. As he looks back on it now, the documentary director says the event was significant and not just because of the obvious excitement he was feeling. It also marked the beginning of his body’s decline.
“I remember walking to and from screenings and just feeling like it was getting harder to walk,” says DaSilva, who has primary progressive multiple sclerosis (MS), a relatively rare form of the debilitating disease. “Everything was slowing down in my body, and everything was taking a little bit longer.”
Calling from a rehabilitation centre in New York, where he lives, DaSilva says he didn’t think much of those physical symptoms at the time, nor was he overly worried two years later, when he fell down on a beach in the Caribbean and couldn’t get back up. Then on holiday with his family, he happened to have his camera rolling. There he is on film, a strapping 25-year-old in a swimsuit trying to stand but falling back down again and again like an infant.
That scene opens his newest film, When I Walk, which is one of a handful of gripping health-related titles screening at this year’s Vancouver International Film Festival. DaSilva’s heartbreaking and inspiring documentary covers a span of seven years and chronicles his physical descent, from that haunting moment at the beach to learning how to use a walker to needing his wife (Alice Cook, a producer, writer, and editor of the film) to get him dressed every morning and help him into his electric scooter.
Primary progressive MS is characterized by steady worsening of neurologic functioning, without any distinct relapses or periods of remission, according to the MS Society of Canada. Only about 10 percent of those diagnosed with MS get this form. MS occurs when the body’s immune system attacks the myelin, which is a protective covering around the nerves of the central nervous system. The cause isn’t known, and there’s no cure. There’s no treatment for the type of MS DaSilva has.
DaSilva, who studied at Emily Carr University of Art and Design and has a master’s degree in media arts, says he wanted to make the film to leave a legacy for his family and to raise awareness of the disease.
“Other people [with MS] can take medication, but for me there’s nothing,” he says. “If nothing else, I can tell my story. It’s a story that most people don’t know about. People don’t know about MS in general, but they definitely don’t know about progressive primary MS.
“Today I went to a physical-therapy session,” he notes. “It’s all old people, people in their 80s. Most of them are able to do the exercises; they can raise their hands over their head. Then there’s me, 35 and struggling. The film is a way for me to continue telling stories, but now it’s flipping the camera on myself. It’s definitely a story that needs to be told.”
An offshoot of When I Walk is a project DaSilva started called AXS Map. It’s a digital database, which is available online and as an app, that identifies places that are accessible to people with disabilities in various North American cities, including Toronto and San Francisco. Whether it’s a café, barber shop, restaurant, bookstore, or other public spot, places that make it easy for people in wheelchairs or who use canes or walkers to enter are included. (DaSilva will be doing an accessibility-mapping event in Vancouver on September 29 and is seeking volunteers to participate.)
He says it’s frustrating to live in a place like New York and still find it impossible to find a cab to pick him up because of his scooter. And as far as living with MS is concerned, he doesn’t mince words.
“I’ve heard people say things like, ‘MS is my gift,’ but I’ll tell you firsthand: it really does suck,” DaSilva says. “I wake up every morning and it sucks. I’ll be having these nice little dreams where I’m moving around; then I wake up to a body that can’t roll over. Knowing you’re stuck in a chair all day sucks. The access map is my way of giving back.”
Another VIFF film that explores health and well-being is local filmmaker Oliver Hockenhull’s From Neurons to Nirvana: The Great Medicines. It analyzes psychedelic drugs as legitimate medical therapy and their use in treating everything from posttraumatic stress disorder and cluster headaches to addiction and end-of-life anxiety. Featuring interviews with an impressive roster of experts, including Dr. Gabor Maté and Amanda Feilding, director of the U.K.–based Beckley Foundation, the film also looks at the role of substances such as MDMA (ecstasy) and LSD in spiritual enhancement and enlightenment.
The documentary Chi, meanwhile, by director Anne Wheeler, chronicles beloved local actor Babz Chula’s journey to India for ayurvedic cancer treatment shortly before her death in 2010.
Jane Hutchison never imagined that her 15 minutes of fame would come as a result of being diagnosed with Parkinson’s disease at age 43. But the Vancouver woman agreed to tell her story in the new Parkinson Society British Columbia–produced documentary, Undefeated. An Intimate Portrait of Parkinson’s.
“I really want people to understand it can happen earlier in life, not just to Michael J. Fox,” Hutchison says in a phone interview. “I liken it to Wile E. Coyote in the [Roadrunner cartoon] episode where he gets these earthquake pills and he ends up taking the whole bottle. He gets an earthquake going on inside his body: his feet start tapping; he’s bouncing around all over the place, ricocheting off stuff. That’s what Parkinson’s feels like. It’s like you’ve had 1,400 cups of coffee. It was a black day when I learned I had it.”
Parkinson’s can cause tremors, postural instability, dementia, and difficulty talking, walking, and swallowing.
“The next time you’re in the grocery store behind someone who’s fumbling to get her debit card out because her hand’s shaking, give her the benefit of the doubt,” Hutchison says. “Maybe she has Parkinson’s. People think you’ve had too much to drink.
“I wanted to do the film to educate people,” she adds. “If it raises awareness, if it raises money, it will help. If someone gives $5, it could be the beaker that holds the liquid that holds the cure. If I didn’t believe in a cure I don’t think I could get up every day.”