By: Shikha Kumar
In 2006, New York-based director Jason DaSilva, 25, was on a beach vacation with his family. One afternoon, he was idly watching airplanes zoom across the skies when his knees suddenly gave way. After a long struggle, he got to his feet, still shaky. This life changing moment was captured on camera by his family, and the footage changed his life forever. The video made him finally come to terms with a condition he was diagnosed with months earlier — multiple sclerosis (MS), an incurable disease that strikes the nervous system and affects motor reflexes and muscle control.
One of the first thoughts he had was how he was going to make films any more. That is when he thought of shooting When I Walk. “Making a film about the progression of the disease seemed a natural way for me to process what was happening. However, this was different from all my other projects because I was featuring in it. I was living my life in the present but also reflecting upon it creatively through the film,” says DaSilva, who is the maker of award-winning documentaries such as Olivia’s Puzzle (2001) and Lest We Forget (2003), among others.
The 85-minute documentary follows DaSilva from that fateful day in 2006 (with the footage of him falling as the opening scene) till 2012. The film documents his thoughts, struggles and hopes as he copes with the disease — from travelling through New York’s pavements on his motorised chair, to visiting France where his grandmother recommended a trip to the “healing waters of Lourdes”. The film shows DaSilva’s excursion to India, where he learned yoga and meditation, and also connected with his Goan roots. His parents moved to the US in the ’70s on university scholarships, while his grandparents left Goa for East Africa. “The trip to India taught me that there are ways of healing outside of western medicine,” says DaSilva.
As time progressed, it wasn’t just his legs that were the problem. MS manifested in blurring vision and hampering motor controls of his arms. In one scene, DaSilva directs his wife to drag the cursor on the editing screen from point A to B, unable to do it himself. Also, DaSilva had to hand over the camera to his wife, mother and brother because he couldn’t hold the camera steady anymore. “It was perhaps the most frustrating part of making the film. It was tough giving on-the-fly lessons in visual composition and camera exposure to my mother,” says DaSilva, who had to forgo cinematography and focus on capturing emotion instead. “I discovered a new love for the expression of emotion and the subtlety of story,” he says.
The film became DaSilva’s biggest mission, and having a strong support system helped. The film features his mother repeatedly advising him to enjoy every day and think of other people and countries, outside of being a “mollycoddled American kid”. His wife, Alice Cook, whom he met at an MS support group and whose mother was affected by the disease, was a lifeline.
The documentary has made the rounds of several international film festivals last year, including Sundance Film Festival. The film has given him a new way for him to see the world and DaSilva would love to screen it in India. He is currently working on the next installment of When I Walk, titled Where You Go, I Go, a narrative on the history of Goa. For now, his biggest hope is that there will be a cure for MS someday. “I am looking into stem cell treatment. It holds the potential to reverse the effects of MS and make improvements in the future.”