Inside the filmmaker's studio with Jason DaSilva on his new film When I Walk about living with multiple sclerosis
Through the shaky hand-held camcorder, it looks like a beautiful day on Maho Beach, located on the Dutch side of St. Maarten. Jets fly in low over the cerulean bay to clear the short runway. The lens points up to the sky; the sun bleaches the atmosphere, and a wave of gas shimmers off a wing as the plane descends over the beach.
The sun blisters, and a family on vacation has come to swim and capture the spectacle for home-video posterity. Shooting the afternoon was the filmmaker Jason DaSilva’s idea, but he has fallen down and handed the camera over to his younger brother Leigh while he tries to stand up. But Leigh turns the camera on his brother. Jason lies prostrate on the beach. He’s in his mid 20s, wearing baggy cargo shorts with a sliver of white boxers peeking out, contrasting against his tan, athletic torso; a tattoo winds around his right bicep. When he tries to stand up, he makes his way to his knees and he pushes down on the earth, gathering the momentum to pull his full body weight to his feet. After a few shaky attempts, Leigh hands the camera off to one of the many cousins on the beach, and comes over to help his older brother. Grabbing a forearm, Jason almost makes it this time, but falls backward again. Beginning the process once more, huddled on his hands and knees, Jason looks into the camera for a split second. He flashes a quick smile, as if it were just another home-movie memory. But in his black eyes, squinting into the sun, there’s panic.
Wind whooshes from propellers overhead, and Jason is finally on his feet, framed by Leigh and his mother Marianne, who looks away from the camera to the ground, her face twisting in concern. Smiling broadly and dusting the sand off his hands, Jason tries to laugh it off. “I am a wreck!” he says. The footage is from six years ago when Jason could still walk, before the cane, the walker, and then the wheelchair. It’s a few months after he was first diagnosed with primary progressive multiple sclerosis. It’s also the moment he began capturing his disease on film.
Today, in the bedroom of a ground-floor apartment in the East Village, wedged in between the bed and stacks of novels and notebooks, and an electric sit-down wheelchair scooter, DaSilva parses the moments of his life and puts them back together again on film. He goes through vacations and birthday parties with his huge Indian family, he and his brothers jumping on the living room couch, running down the soccer field in junior high, explaining his high school art installation at a local Vancouver gallery, walking the red carpet at the TriBeCa Film Festival as an up-and-comer on the scene. In the 400 hours of film, there are many last times—the last time he played piano, the last film he shot on location. But there are also many firsts—seeking a healing miracle in Lourdes, his wedding. All of these moments are assembled like a collage, mixing memory and desire, making the film more than just a narrative of collapsing health. “It’s my yearbook,” DaSilva says. On a giant computer screen mounted above his desk, he edits the years into a single hour. His bedroom has become his workstation, and the screen is his portal to the world before MS, beyond the confines of the few blocks of Manhattan that have become his world.
“I’m just recently happy with the direction it’s going,” DaSilva tells me as he stares into the computer screen, not pausing as he edits on what looks like a giant Excel spreadsheet. He is generous but distracted, under pressure to finish the final cut of the film to submit to PBS for screening on either PBS/POV or Independent Lens, and then to send it off to festivals. He had been working with another editor, but found his story unrecognizable. It was a “Tiny Tim story of illness,” as his wife Alice said while working at her desk on the opposite side of the bedroom. “It showed him as meek and desperate for a cure. It was a very simplistic voice. We’re smarter than that.”
That version of illness, the one with the recognizable arc of despair and acceptance and hope that is bathed in soft light and weepy confession, is the kind that Jason has been trying to avoid with his film When I Walk. “I just want to be the filmmaker who got MS rather than the guy with MS who’s a filmmaker.” When I Walk follows Jason through the five years since his diagnosis at 26, as he pursues every avenue of treatment available. We follow him to India as he tries yoga, transmeditational healing, and ayurveda, and wait with him in infinite MRIs and doctor’s offices as the news goes from bad to inconceivable. We’re there when a doctor tells him that he’ll be in a wheelchair before his 30th birthday and when the Indian actor Kumar Pallana tells him that it’s all in his head, that he can harness the power of positive thinking to undo the havoc his white blood cells are wreaking on his spinal cord. Dragging the mouse across the computer screen (more slowly these days, as he’s beginning to lose control of his hands), he says, “People who see the movie are expecting me to be like ‘my life is over'…It was somebody else trying to tell my story, which is really weird, so now I’m at the point where I’m taking it back.”
DaSilva is not prone to hyperbole. The rapid decline of his health is “kind of funny,” and the effect on his life has been “weird.” When I ask him if watching footage of himself in the days before the disease makes him sad, he says, “Uhhhh, I guess so.” In conversation, he perks up the ends of his sentences, like he’s asking a question: “The kind of MS I have? Primary progressive? Only one in 10,000 people get it?” He doesn’t speak in saccharine platitudes, or tell the kind of medical story that highlights exceptionality in people who are afflicted with illness. “We all have different struggles,” DaSilva says in a When I Walk voice-over, “but we’re more similar than we think.”
Connecting worlds has long been DaSilva’s project, and showing commonalities shared by distinct places and social classes is an ongoing theme in his work. He made his first film at 23, the critically acclaimed short Olivia’s Puzzle, which went to Sundance in 2003 and received an Oscar qualification two years later. It examines the lives of two girls, one Indian and one Indian Canadian, and follows each girl’s daily routine in her home country, reveling in their quotidian thrills. “I grew up Indian,” DaSilva says, “but I didn’t know exactly what that meant. When I was a kid there was no way to understand where you’re from as a second-generation person.” A Song for Daniel, which enchanted critics and audiences at the TriBeCa Film Festival, follows an Iraqi boy and an Iraqi American, and Twins of Mankala shows the disparities of growing up Kenyan in a village versus Lowell, Massachusetts. What comes through most vividly in each film is DaSilva’s exhilaration with the daily business of living.
Filming on location in Cuba (Cuba Dreams), Kenya (Twins of Mankala), Iraq (A Song for Daniel), Goa (Olivia’s Puzzle), and New Orleans (To Be Continued), he consistently connected the political and the personal, crossing continents and generations. Given the journey of the DaSilva family, his global perspective seems encrypted in his DNA. His great grandfather grew up in Goa, India and moved to Bombay to study medicine, and his grandfather moved to Kenya from Goa in 1935 to work for the British Civil Service. DaSilva’s mother Marianne grew up speaking English, Portuguese, and Swahili in Nakuru, and spent summers visiting cousins in Southern Rhodesia and Mozambique. She came to the United States for college in 1970. Jason’s father, also of Goan descent, grew up in Uganda, but the family fled when Idi Amin seized power in 1971. His parents married and lived in Ohio and later moved to Florida before ultimately going to Vancouver to raise their three sons. Making a connected living narrative out of disparate cultural experiences is part of his heritage.
Reinvention and transformation, as major parts of the immigrant experience, influence his approach to adversity. “I think the positive attitude is instilled. Because my family is from an immigrant background”- DaSilva pauses, putting on a deep, overdramatic voice- “we know what it’s like to have a hard life.” While his parents are closer to the political strife that brought his family to North America, Jason’s struggle is distinctly personal, as he asks through a voice-over in the film: “How do you escape a broken body?”
Self-presentation has been at the fore of DaSilva’s mind since he began this project. Earlier, he documented the lives of others as a filmmaker; now, he has become the subject of his own art. And being the principal character of the film and its main architect has meant watching himself over and over - from childhood, to when he stood at the precipice of fame as a filmmaker, to his diagnosis, to his decline — on a loop. He literally watches his health get worse everyday. “It’s been hard,” he said. “At first, I thought it would be fun, but then it just became a documentation of myself getting worse. After a while I was just like, ‘I don’t want to do this anymore.’” The on-camera persona strikes a sharp contrast with the person today. He is in demonstrably worse shape than we see in the film. He seems smaller, shrunken from the handsome guy on the red carpet, and since I met him four months ago, he looks even more frail. Now almost fully confined to a wheelchair, “I take maybe a total of 15 steps a day.” Still, he is sweet and reserved, and resists opportunities to kvetch, of which there are many.
But as he edited, he felt pressure to get in touch with the rawness of his experience, to up the emotional ante for viewers. “It’s a trick because you want to make it honest, but you also want the viewer to be satisfied. We have to find this balance of getting a person who’s not super emotional and not wearing his heart on his sleeve, and keeping that satisfaction for the viewer.”
Finding a way to present his story, to make people feel connected to him as a narrator, has been tricky. “I’m not inherently the most dramatic, emotional person,” he told me, as he continued editing his film, his eyes not straying from the screen. His mother said that even as a small child, “He was very easy, always smiling. We’d have parties in the house and we’d put him in a car seat in the middle of the room and he’s just sleep.” “As odd as it may sound,” his brother and producer Leigh said, “Jason’s personality has not changed since diagnosis.” This, however, is not the stuff of moving medical narratives.
It’s hard to imagine what it’s like to live with MS, to feel the legs as sandbags, to try to stand up but lose balance. It’s hard to imagine how the disease gnaws at the nerves, leaving them like a lamp's frayed cord, and the sputtering short circuits in the brain and body that gnawing produces, but DaSilva’s explanations are simple and profound. By using computer animation, he portrays cartoon white-blood cells coming under attack and the fog that muddles his visual field. DaSilva studied art and photography before becoming a filmmaker, and those influences provide a whimsical relief throughout the 60 minutes. With rich, saturated colors and cartoon interludes, there’s a sense of joy and vitality, of relishing in the process of making a piece of art, that makes you momentarily forget the tragedy onscreen. The blend of techniques transcends a story about living with MS, and is more about living as an artist. DaSilva somehow weaves together beautiful images with quiet, slow-burning horror, an aesthetic all his own.
There’s a moment after putting a work of art into the world when it does not belong to the artist anymore. Instead, it belongs to the audience, to the people who will interpret and experience it, often separate from the artist's original intentions. People close to DaSilva claim he has somehow preserved his emotional self while his physical self has deteriorated. DaSilva doesn’t want his viewer to feel sorry for him, but it’s impossible not to feel pathos as we watch the walls close in on him, as his world recedes from the island of Manhattan to a few blocks in his neighborhood, to a few restaurants and coffee shops that are handicap accessible. Even as Jason completes his MFA at Emily Carr University in Vancouver, returning home so his mother can take him to doctor’s appointments, it’s triumph wrapped in tragedy. As he undergoes experimental surgeries waiting for a miracle, we hold our breath and wait for the worst.
Outside of self-presentation and film packaging, the serendipity of his life story draws you in, particularly in the story of meeting his wife, Alice Cook, at an MS support group. A pretty brunette environmental engineer, she was immediately attracted to DaSilva, despite the fact that he was fully wheelchair bound. “I was just curious about him,” she said. She was curious about her own motivations too, since her mother also has MS. “When I first started dating Jason, I was like, ‘Am I doing this as emotional therapy with my mom?’” The fact that Cook had first-hand experience with the disease relieved Jason, as his relationships since MS usually ended around the six-month mark. “Some girls would say they could handle it, but then they saw how difficult it would be.” Apart from her mother’s MS, Cook harbored pragmatic anxieties. “I knew I had a crush, but in my head I was like ‘what if he can’t sleep with me anyone?’” But after their first date their attraction was undeniable. On one of their early dates, Alice rented a wheelchair scooter and went with Jason to the Guggenheim. The couple spiraled around the swirl of the museum, falling for each other, on wheels. “I feel like I found my perfect match,” he said.
DaSilva proposed on vacation in Hawaii after just nine months of dating. They were married in the summer of 2010 in a garden ceremony in the East Village, and she sat on his lap as they wheeled down Second Avenue with a “Just Married” sign taped to DaSilva’s scooter. Friends and family were concerned for Cook, and the enormous responsibility marrying a person with a debilitating illness like primary progressive MS would entail. “I have to admit, I was scared,” she told me. “If he didn’t have MS, there wouldn’t be any fear. But there was, admittedly.” Though the “hard stuff doesn’t outweigh the good,” Cook says she “became a mom, more or less, overnight.” The couple just recently hired a home attendant to bathe and dress DaSilva and walk him to physical therapy at the gym in the morning, but, before, Cook did it all herself.
And there are the bone-rattling scares. He was hit by a car while crossing the street in Soho. “MS creates these little crises,” she said. There was the day he fell in the bathroom, and laid on the cold linoleum floor for over an hour until Cook could get there to hoist him up. As she tells these stories, the color drains from her face and tears well in her blue-gray eyes. And there are the more persistent worries — that he might one day live in chronic pain, that she may one day be the head of the household. In spite of it all, they are determined to have children. “I’m not some kind of saint. I just fell in love with someone,” she said.
I ask her what Jason brings to her life. She smiles. “I’m a repressed writer. Working with Jason on the film is a blast, it’s such a breath of fresh air to have a more creative element in my life.” Cook is the main writer of When I Walk, and she and DaSilva are true collaborators, bouncing ideas off each other from their twin desks in the bedroom. But their biggest collaboration so far has been a mobile application they developed called AXSmap (pronounced “access map”). An interactive database, similar to Yelp, it rates handicapped accessibility across the globe. Life in the scooter has changed “all the basic things you can do,” Jason said. “Life isn’t spontaneous anymore. You have to schedule everything.” AXSmap may reintroduce a measure of spontaneity into daily life. With funding from Google, the app allows people with disabilities to gauge a restaurant’s accessibility — steps, elevators, bathrooms, and even large-print menus. Wendy Levy, creative director of the MacArthur Award-winning Bay Area Video Coalition called DaSilva’s creation “Game-changing. He has designed a story-driven, socially oriented platform for health reform and social justice for the disabled community. He’s moving his story world into a fully interactive space.”
Though DaSilva’s film complicates the image of disabled people and fights for their right to accessibility, his project is also an exercise in control. The basic impulse that drives him forward, that enables him to sit before his computer screen for 12 hours a day, watching himself get worse, is simple: he wants to know he still can. “In some ways the film has been good for me,” he says, “because it’s shown me what I can still do amidst MS, because it’s this crazy disease that affects your cognition. Making the film has shown me that it hasn’t.” More than just telling his story, he’s making sure he has the capacity to tell it at all. It reinforced his identity as a filmmaker because, as he says, “If I can’t make films, then who am I?”
There’s also a desensitization process that goes on while documenting his MS. In the editing, he parses a scene of himself falling down and getting up again. In this sense, he controls the disease, rather than allowing the disease to control him. The film has also become a place to channel his anxieties. As his brother-in-law Dr. Thomas Cook, a psychiatrist, asks, “Is it an unconscious attempt to reduce anxiety, or is it a way to help him face reality?” DaSilva confronts himself, zooming in on every pore and follicle, every failed path of treatment, as he edits the footage. He has, in a sense, constructed a character, a projection of himself (“Last night he was like ‘I’m making this character so cool!’” Alice told me). Dr. Cook suggested that “perhaps overexposing himself to his reality, watching himself in edit after edit, is actually a way to distance himself from the illness.” DaSilva controls MS when he is at his computer, editing and cutting aspects to highlight and diminish. It’s storytelling. It’s creativity. But as much as anything, it’s about control. “I have a top-down view of my life and other people’s lives now,” he said, in relation to the way this project has affected his perspective. “I’m the director, I see the big picture.” He pauses, and laughs. “I’m the puppet master!”
Today, he seems very much in control. He’s looking forward to fine cutting and color correcting the final version of the film he has been working on for six years, and sending it off to PBS. He and Alice recently moved into a spacious, airy studio in Williamsburg. In the bathroom, there’s a framed poster of Andrew Wyeth’s Christina’s World. In the painting, a young woman crawls to a house in the distance across a brown, treeless field. Christina Olsen, the subject of the painting, suffered from polio and was paralyzed from the waist down, like DaSilva. His mother gave him the poster as a gift. “Recently?” I ask him. “No, when I was 16,” he says. “I didn’t realize it was someone with a disability. I just always liked the painting.”
Editor's note: An earlier version of this article with a number of pre-editing errors appeared earlier, these have been corrected and we sincerely regret the mistake.
Elizabeth Greenwood is a freelance writer living in New York City. She writes about culture, and is currently obsessed with people who have faked their own deaths.