The film “When I Walk” by filmmaker Jason DaSilva will premiere on PBS on Monday, June 23, 2014. It was an Official Selection at the 2013 Sundance Film Festival, and the Best Canadian Feature at HotDocs, 2013. Original music is composed by Emmy award winner Jeff Beal (read my interview with Jeff about his MS journey here.) I was provided with a complimentary copy of the film. All opinions expressed are strictly my own.
By the age of 25, Jason DaSilva was a young man blazing his own trail as an accomplished documentary filmmaker, picking up an Oscar nod along the way for his film “Olivia’s Puzzle.” His talents as a documentarian were evident as his star began to rise with several well-reviewed films under his belt.
He seemed unstoppable.
Jason enjoyed an active social life that was typical of a young man living in Manhattan, enjoying the vibrancy of an exciting city with friends and family.
All of that was about to suddenly change forever.
Jason enjoyed capturing his life on film. Bringing his camera along on a day at the beach at a family outing was typical. But this particular day would be different. Jason had no way of knowing that while he was busy documenting his life, something terrible was about to happen.
While walking on the sand, Jason suddenly fell to his knees. As hard as he tried, he couldn’t stand up. For the first time in his life Jason was totally helpless, forcing him to rely on others to get him back on his feet.
This was the beginning of Jason’s next journey.
Jason received the devastating news that he had primary progressive Multiple Sclerosis, a form of MS that steadily worsens without any distinct relapses. He soon realized that filming his journey would be unprecedented; he was the perfect person to illustrate what it was like to live a life with a degenerative disease.
This film is a dedication to Jason’s struggle, and I applaud his indomitable spirit that he displays with his broad smile and genial manner while facing each day with more obstacles than the one before. He exposes himself to us on film, and we are a silent audience helplessly watching this lovely, vibrant man bravely face the horror of his disease.
“When I Walk” is an extraordinary piece of art, bringing us along on Jason’s journey, watching him slowly lose the ability to walk, to see and to maneuver a city that can be inaccessible and unkind to someone with a disability.
What struck me about this film is Jason’s unwavering honesty and his life-affirming outlook on the joy of life. We watch him laugh and cry, always relying on his strong inner spirit to guide him with the harsh realities of living with MS. His family envelops him, and I was particularly touched by how spiritually strong his mother was, taking care of his physical, emotional and spiritual needs with tough love.
Alice, Jason’s new wife, is his partner in every way. She, too, shares her honesty about life with a husband who is living with an incurable disease. Her dedication to Jason is touching to watch, from their courtship to their wedding, and then onto trying to start a family. A tragic miscarriage at a hospital that was inaccessible to Jason was heartbreaking to watch. But then some good news. Well, you’ll have to watch the film!
While traveling around the world in a quest to find a miracle – healing waters, meditation, yoga – we witness Jason trying to find a cure, searching for a way back to the life he once knew.
In the MS community, Jason is a giant among us. He has been telling his story since his diagnosis, and I have had the good fortune to read his story and hear about his ventures for a long time. His film has been highly anticipated because it tells our story to the non-disabled world. We not only applaud Jason for his efforts, but also thank him for creating this documentary. Educating others about Multiple Sclerosis is important to us, because we want them to know that we matter, we add great value to the world, and we are more than our MS. We continue to keep hope in our hearts that a cure will be found in our lifetime.
“These days, I’m working on developing AXS Map, a crowd-sourced online tool for sharing reviews on the wheelchair accessibility of buildings in New York City. And while I miss the incredible spontaneity and unlimited access to the city I once had, my diagnosis was not the end of the world….it has provided a new way for me to see and be in the world. This was the basis for the voice and heart that emerged in the film.” ~Jason DaSilva, Director/Producer