“When I Walk”: A New Documentary About Life With MS

On June 23, PBS’s POV will debut a documentary film that is written, produced and starring filmmaker Jason DeSilva entitled, “When I Walk.” The documentary chronicles Jason’s life before, during and after his diagnosis of primary progressive Multiple Sclerosis.  

The film, an Official Selection at the 2013 Sundance Film Festival as well as the Best Canadian Feature at HotDocs, 2013, also features original music by Emmy Award winning composer, Jeff Beal, who also lives with MS.

Jason’s story begins at the young age of 25 when he is beginning to carve out a successful career as an accomplished documentary filmmaker.  Gaining respect within the film community, he picked up an Oscar nod for his impressive film “Olivia’s Puzzle.”

Enjoying the type of active social life you’d imagine for a young, successful man living in Manhattan, Jason loved spending quality time with family and friends while enjoying the vibrancy that New York City offers.

But that all changed abruptly, and the change was captured on film.

During an outing at a beach with his family, Jason’s camera was rolling when he fell down into the sand. Try as he might, he could not stand up. This marked the first time Jason would be totally dependent on others to help him get back on his feet.

Jason’s new journey was about to begin.

After receiving the shocking news that he had primary progressive MS (a form that steadily worsens without any distinct relapses), Jason soon decides he is in the perfect position to film himself as someone struggling with a degenerative disease.  He wanted to tell his story to educate others.

That is his gift to us.

“When I Walk” is about Jason’s physical and emotional struggle with a cruel and often unforgiving disease. He is a brave person to allow the camera to follow him through his daily battles with MS.

The film can be difficult to watch at times because while we are rooting for Jason to regain his former physical self, we are forced to watch him struggle with the realities of MS.  We hold onto hope that something – anything – will be discovered to help people living with PPMS lead a better quality of life.

To me, Jason is a hero.

“When I Walk” is an extraordinary piece of art that provides the viewer with a front row seat to Jason’s journey.  As he loses the ability to walk and see, we watch his family and friends envelop him.  We see a new love interest become a life partner, and we witness a deeper inner strength help him gain a new resolve to live the best life possible.

A city can be a cruel place for someone with a disability, yet Jason rises to the occasion by seeking out places that allow him to enjoy the city he loves.  It also catapults him into starting a new project:

“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

In the MS community, Jason is a rock star.  He has been telling his story ever since his diagnosis. I have been fortunate to read Jason’s 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, because we want everyone to know that we matter, we add great value to the world, and each of us are more than our MS.

NOTE: Please consult your local PBS station, or go to pbs.org, for more information on “When I Walk” airs in your area.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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