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Diagnosis of Multiple Sclerosis Turns Filmmaker Jason DaSilva’s World Upside Down, Propelling Him on a Fateful Journey to Make Another Documentary
Extraordinarily accomplished, poignant and wise. –Inkoo Kang, Los Angeles Times
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.
Jason DaSilva’s When I Walk will have its national broadcast premiere on PBS (check local listings) in summer 2014 as part of the 27th season of POV (Point of View), American television’s longest-running independent documentary series and winner of 32 Emmy Awards® and two International Documentary Association Awards for Best Continuing Series.
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, as he explains, “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 mid-way 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 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.”
When I Walk is a co-production of AXS Lab Inc. and ITVS, with support from the Sundance Institute Documentary Film Program.
About the Filmmakers:
Jason DaSilva, Director/Producer
Jason DaSilva has been a prolific filmmaker for the past 10 years, directing four short films (Olivia’s Puzzle, A Song for Daniel, Twins of Mankala and First Steps) and two feature-length documentaries (Lest We Forget and When I Walk). Many of his films have won awards; Olivia’s Puzzle premiered at the 2003 Sundance Film Festival and qualified for an Academy Award®. Three of his films have been broadcast nationally on PBS, HBO and CBC. He also produced Shocking and Awful, a film installation on the movement against the war in Iraq, exhibited at the 2006 Whitney Biennial.
In 2006, DaSilva took a short break from filmmaking to earn his master’s degree in applied media arts from Emily Carr University. He produced and directed an op-doc (opinion documentary) for The New York Times entitled The Long Wait, published in January 2013. He and Alice Cook live and work in Brooklyn, New York.
Alice Cook, Director/Producer/Editor
Alice Cook is a documentary filmmaker and producer living in Brooklyn. When I Walk is her first production. She also produced and directed the New York Times op-doc The Long Wait, published in January 2013. She produced the digital media project AXS Map, which was funded by charitable giving from Google and other organizations. Cook received her bachelor’s and master’s degrees in engineering and science from Stanford University.
Directors/Producers:Jason DaSilva, Alice Cook
Executive Producers: Yael Melamede, Stanley Nelson, Lydia Dean Pilcher, Peter Starr,
Editors:Jason DaSilva, Keiko Deguchi, Alice Cook
Animation:Mihai Wilson, Davide Disaro, Wyatt Banks, Matt Faust
Original Music:Jeff Beal
POV Series Credits:
Executive Producer:Simon Kilmurry
Co-Executive Producer:Cynthia López
VP, Programming and Production:Chris White
Independent Television Service funds, presents and promotes award-winning documentaries and dramas on public television, innovative new media projects on the Web, and the Emmy® Award-winning weekly series Independent Lens on Monday nights at 10 p.m. on PBS. Mandated by Congress in 1988 and funded by the Corporation for Public Broadcasting, ITVS has brought more than 1,000 independently produced programs to date to American audiences. For more information, visit www.itvs.org.
Produced by American Documentary, Inc. and beginning its 27th season on PBS in 2014, the award-winning POV is the longest-running showcase on American television to feature the work of today’s best independent documentary filmmakers. POV has brought more than 365 acclaimed documentaries to millions nationwide. POV films have won every major film and broadcasting award, including 32 Emmys, 15 George Foster Peabody Awards, 10 Alfred I. duPont-Columbia University Awards, three Academy Awards® and the Prix Italia. Since 1988, POV has pioneered the art of presentation and outreach using independent nonfiction media to build new communities in conversation about today’s most pressing social issues. Visit www.pbs.org/pov.
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POV’s award-winning website extends the life of our films online with interactive features, interviews, updates, video and educational content, plus listings for television broadcasts, community screenings and films available online. The POV Blog is a gathering place for documentary fans and filmmakers to discuss their favorite films and get the latest news.
POV Community Engagement and Education (www.pbs.org/pov/outreach)
POV’s Community Engagement and Education team works with educators, community organizations and PBS stations to present more than 600 free screenings every year. In addition, we distribute free discussion guides and standards-aligned lesson plans for each of our films. With our community partners, we inspire dialogue around the most important social issues of our time.
American Documentary, Inc. (www.amdoc.org)
American Documentary, Inc. (AmDoc) is a multimedia company dedicated to creating, identifying and presenting contemporary stories that express opinions and perspectives rarely featured in mainstream media outlets. AmDoc is a catalyst for public culture, developing collaborative strategic engagement activities around socially relevant content on television, online and in community settings. These activities are designed to trigger action, from dialogue and feedback to educational opportunities and community participation.
Major funding for POV is provided by PBS, The John D. and Catherine T. MacArthur Foundation, National Endowment for the Arts, New York State Council on the Arts, the New York City Department of Cultural Affairs in partnership with the City Council, the Wyncote Foundation, The Educational Foundation of America and public television viewers. Special support provided by The Fledgling Fund. POV is presented by a consortium of public television stations, including KQED San Francisco, WGBH Boston and THIRTEEN in association with WNET.ORG.
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