Watch Tuesday, April 28, 2015 at 6:30pm on WORLD.
Jason DaSilva tells a brave and remarkable story in When I Walk. He was already an accomplished documentary filmmaker (Lest We Forget, Olivia’s Puzzle) by the age of 25. If there is glamour in the world of documentary, DaSilva garnered his share of it with his intelligence, good looks and genial manner, and he was able to travel the world making films about people and issues that mattered to him.
In 2006, DaSilva took a camera with him on a family vacation in the Caribbean. Though he had been diagnosed only months earlier with multiple sclerosis, the disease—which attacks the central nervous system—had until then remained invisible. In the vacation footage, DaSilva is robust and in good spirits. Then a family member holding the camera catches the moment when the young man’s legs simply crumple under him, leaving him helpless. The episode passes and DaSilva recovers his strength, but his collapse heralds the onset of an untreatable, unpredictable, often disabling illness. Being the filmmaker that he is, DaSilva decided to make a movie about it.
Given the mysteries surrounding multiple sclerosis, or MS—including its causes and the course it will take in any individual—DaSilva couldn’t have known what he was getting into. Using animation, he illustrates what he learned, that MS causes the body’s immune system to attack nerve endings in the brain and spinal cord. The results can include loss of vision, muscle control, balance and what DaSilva calls “a whack load of other problems.” Like the comment, the animation has a surprisingly comic edge, and in the early stages of the disease—and the film—he is amazingly buoyant and positive, and even adventurous in his attitude about the journey he has begun. In part, this is because DaSilva “feels fine most of the time.”
When the filmmaker’s mother, Marianne D’Souza, enters the film, it’s quickly clear that her son’s fighting spirit was inherited from her. He’s beginning to struggle with the disease taking over his life, but she upbraids him—in a tough, old-world and loving manner that reflects her roots in India. She challenges him to finish the film he’s started, wants to know why he’s “whining and sighing all the time” and, after a litany of global suffering, tells him, “Things are tough. . . . Get real . . . you molly-coddled North American kid!” Throughout her tirade, DaSilva can’t stop grinning. As he says, “When all else fails, there’s Mom.” (Later in the film, she confesses that her bluster was partly a way to control her anguish.)
In DaSilva’s case, MS has taken a tragically rapid course. In the span of the five years covered by When I Walk, the once vigorous, well-built young man goes from walking on wobbly legs to using a cane then a walker then a wheelchair and then, almost happily, a scooter. But the physical difficulties and mishaps multiply, and he struggles to continue making his film.
He fights back in every way he can. In the beginning, he spends hours at the gym, until he no longer can. He undergoes an experimental procedure that promises much but benefits him little. He goes to his ancestral India to defy his disease by making a fiction film, but finds himself too disabled to finish. While there, he tries traditional medicine and spirituality. He visits an old uncle to ask whether the uncle remembers anyone else in the family with such a disease. An aunt on the Catholic side of his family sends him off to Lourdes, France, where he finds no miracle cure.
When DaSilva finally has his own emotional breakdown in front of the camera, he bemoans most of all the rapid pace of the disease. Despite his determination to adapt and make the most of what he has, he discovers that his disabilities have intensified so quickly that he barely has time to compensate for one affliction before something worse arrives. It’s difficult to see how anyone could rise above such a situation, much less complete a movie in it.
Yet midway through When I Walk, something miraculous occurs. DaSilva meets Alice Cook, a young woman whose mother has MS, in a support group. The story of their love, evidently as indomitable as MS, takes them through great and small joys and despair, with unexpected turns of humor. They marry and Cook gets pregnant.
Together, DaSilva and Cook spearhead the creation of AXS Map (access map), a crowd-sourced online tool for sharing reviews on the wheelchair accessibility of buildings in New York City. AXS Map encourages people to rate the accessibility of businesses and places on a scale of one to five stars. For DaSilva, the dream behind AXS Map is to know all the places that are accessible to him nearby in order to regain the spontaneity and adventure he enjoyed when he was able-bodied.
DaSilva relies more and more on Cook not only for everyday needs, but also for help in editing the film. Yet MS cannot take his whole life away, and his bond with his wife becomes both the means and subject of completing When I Walk. DaSilva’s early decision to film his struggle was both rash and inspired. Through the added burden of making the film, an unblinking record of his decline, he manages a great love and a great film, and perhaps makes meaning of his fate.
“I wanted to capture this transformative experience—becoming disabled—because I hadn’t seen it done before, and people need to see how a degenerative disease impacts the lives of those living with it,” says DaSilva. “My diagnosis was not the end of the world. Instead, it has proven to be a new way for me to see and be in the world.”