In 2006, 25-year-old Jason DaSilva was on vacation at the beach with family when, suddenly, he fell down. He couldn’t get back up. His legs had stopped working; his disease could no longer be ignored. Just a few months earlier doctors had told him that he had multiple sclerosis, which could lead to loss of vision and muscle control, as well as a myriad of other complications. Jason tried exercise to help cope, but the problem only worsened. After his dispiriting fall on the beach, he turned to his Mom, who reminded him that, despite his disease, he was still a fortunate kid who had the opportunity to pursue the things he loved most: art and filmmaking. Jason picked up the camera, turned it on his declining body, and set out on a worldwide journey in search of healing, self-discovery, and love.
An emotional documentary filled with unexpected moments of humor and joy, WHEN I WALK is a life-affirming film driven by a young man’s determination to survive—and to make sense of a devastating disease through the art of cinema.
I love New York. When I was younger, the city was my playground. You could find me on any given weekend catching brunch with a friend at a café, going to an East Village restaurant for dinner, and then hopping the subway, headed to a nightclub in Chelsea. But at age 25, nine years ago, I was told I had multiple sclerosis, and I saw my freedoms slowly vanish. All of a sudden, I found myself using a walker—now, a motorized chair—and planning daily activities with precise schedules and strategies for getting from one place to another, trying to maintain some semblance of the spontaneous city life I loved to live.
I wanted to capture this transformative experience—becoming disabled—in WHEN I WALK 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. The first scene in the film is of me on the beach with my family. I brought my camera along to film the get-together, but the footage we captured meant more than I could have imagined: I fell down, and couldn’t get back up. It was the very first time my MS made something in my life go completely awry, made itself visible and impossible to ignore. What was supposed to be a nice family vacation turned into the inciting incident. Soon after, and encouraged by my family, I chose to not ignore my MS but to turn my camera on it instead. I had made films all my life, so making a film about the progression of the disease seemed a natural way for me to process the journey.
Documentarians often want to build trust and acceptance with their subjects. Being that I was the subject of my own film, and that I didn’t yet have that acceptance of myself, the filmmaking was arduous at first. There was always the internal struggle of putting myself on camera and deciding how much of myself I wanted to reveal. As I got worse and worse, reviewing the footage became emotionally difficult and physically draining. Living your life in the present while also reflecting upon it creatively, actively editing it and putting the pieces together in real time, put me in a psychological feedback loop that was tricky to negotiate. Every night after filming and editing, I would have dreams of being able to walk; then I’d wake up unable move and start the process of filmmaking all over again.
Also difficult was being forced to hand the camera over to my brother, my mother, my filmmaker friends, and my non-filmmaker friends. This was partly because of my MS (my vision was getting worse), but also because being in the shot meant that I couldn’t capture it myself. This was perhaps the most frustrating part of making this film. I used to have total control over the camera and I was a meticulous shooter, so you can imagine the torture that was trying to give on-the-fly lessons in visual composition and camera exposure to my mother! The beautiful cinematography of my past was sacrificed, and my priority became capturing emotion. I found a new love for the expression of emotion, the subtlety of story, and capturing quietly compelling moments of human experience.
I discovered that and other new loves since we began filming WHEN I WALK. And while I miss the incredible spontaneity and unlimited access to the city I had—and am developing ways to make that more of a possibility for those with mobility challenges through AXS Map (see Page 6)—my diagnosis was not the end of the world. Instead, and with a bit of determination, it has proven to be a new way for me to see and be in the world. This was the voice and heart that emerged in the film, almost more through its own will than mine. As director, my role was to foster that spirit, to learn to adapt, and enjoy the ride.
—Jason DaSilva, Director