Cathy Chester | An Empowered Spirit

When I Walk: A Documentary Premiering On PBS Is An Honest Look At Life With MS

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.when i walk documentary film

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.

when i walk film documentary

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!

when i walk film documentary

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

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48 thoughts on “When I Walk: A Documentary Premiering On PBS Is An Honest Look At Life With MS

    1. shifrachester@gmail.com Post author

      I am so glad you are going to share it, Carol. That makes me feel good knowing this information will be spread around.

    1. shifrachester@gmail.com Post author

      You are so welcome, Kim. Thank you for sharing your thoughts, and I’d be curious to know what you think about it after you see the movie.

    1. shifrachester@gmail.com Post author

      I know what you mean, Lisa. Although it was difficult at times to watch, it’s so important to learn about each other’s journeys. Jason is so inspirational and a lovely man. Let me know what you think after you watch it.

    1. shifrachester@gmail.com Post author

      You are very welcome, Lisa. I hope you get to see it, and let me know what you think.

    1. shifrachester@gmail.com Post author

      I love documentaries too, Lois. They tell everyone’s story – and we learn from history and each other. I hope you enjoy this one.

    1. shifrachester@gmail.com Post author

      It surely is. Because we all have some kind of disability, whether they’re chronic or not.

      Thanks for sharing your thoughts, Emily.

    1. shifrachester@gmail.com Post author

      Yes, it is hard to watch such a lovely man suffer so. But he is filled with joy and spirit, hard at work on his next project of creating a map for NYC of accessible locations!

  1. Loree Hart

    Thank you so much Cathy! This is such incredibly important work – both Jason’s and yours. The trailer moved me to tears – from empathy and from happiness that this will help us educate a little more of the world about MS. Can.not.wait. to watch it!

    1. shifrachester@gmail.com Post author

      You are so welcome. But remember that we all have MS differently, and no two people are alike. So Jason’s journey will be different from Tom’s’; keep that in mind as you watch the film. And reach out to me with any questions.

    1. shifrachester@gmail.com Post author

      Thank you, Doreen. And thank you for sharing this with your friends. Education and awareness means everything.

  2. Helene Crispino

    I can’t wait to watch the documentary, When I Walk. My husband and I have been married for 38 years and 23 of those years have been living with MS. We will never forget the day we received the news that my husband Alec had MS. We have tried a number of things in hopes to stop the progression. In 2010 Alec tried CCSVI which, unfortunately did not work for him. He is a man who will never give up! He’s 64 years old still works full time and hand cycles. A few years back he was selected as Ambassador for the CT. MS Chapter BKM bike race for which he participated in. He is truly an inspiration not only to me and, our two amazing daughters but, to many others who have had the opportunity to meet him. We’ve come a long ways since my husband was diagnosed, we are hearing more and more about the disease, unfortunately it’s due to the fact that more people today are being diagnosed with the disease than years past. Today what concerns me the most about the disease, is how many individuals are being diagnosed and how young and how quickly the disease attacks them. We need to unite and stand together and by doing so we can win the battle. Never ever give up!

    1. shifrachester@gmail.com Post author

      Helene,

      Thank you so much for sharing your story. I hope your husband finds everything he needs to make his MS journey an easier one. There are so many medications, alternative medicines and other various things to help us live a better quality of life.

      As far as the diagnoses, you have to also consider the newer methods being used today are far better at diagnosing patients than they were years ago. I was diagnosed 28 years ago, and I’ve seen a big change in how people are diagnosed today. That is part of the reason for the increase in numbers, and the seemingly increase in children. But, yes, that breaks my heart too to see the young people having to live with this.

      Thanks again~
      Cathy

  3. Helene Bludman

    Awesome review, Cathy. I agree with one of the comments that this film will resonate beyond the disability community. I look forward to watching and learning. Thank you for sharing.

    1. shifrachester@gmail.com Post author

      You are so right about reaching many people – everyone! It is all about us learning about one another, Helene, and I know Jason is the right person for this job.

  4. Karen Austin

    I watch films about people living with dementia and cancer (both documentaries and fictional depictions), but I think I should branch out to look at how people with MS manage. There will be some differences but a lot of similarities, too. I am glad to see this director bring his talents to advocacy and awareness. It was great that he could roll with it and move forward in a new direction. Thanks for the post / trailer.
    Karen Austin recently posted…The Gift of Years: A ReviewMy Profile

    1. shifrachester@gmail.com Post author

      Yes, I love documentaries too. As far as illness, many similarities, indeed. A wide range of emotions, to begin with Karen.

      We are always curious and yearning to learn more, and these films provide a wonderful way to do that.

      Thanks for sharing your thoughts.

    1. shifrachester@gmail.com Post author

      Thank you, G&F. I am glad you enjoyed it and hope you get a chance to see the film.

  5. Linzi Vajdik

    Thank you for sharing this infio. I am looking forward to watching the PBS show on 6/23/14. I have had MS for 40 years this last March. This will briing l;ight to all of us who have MS. Thank You,
    linzi

    1. shifrachester@gmail.com Post author

      I am so glad you will watch the film. Best of luck to you and your continued journey with MS. Here’s to wellness from here on in!

  6. Geoff Maguire

    Hi Cathy,

    I caught your post on LinkedIn and followed the link.
    Thanks for posting this. I am very interested to see the film.
    I see that PBS is running the film on the 23rd. Do you have any idea if it will be broadcast anywhere else?

    I am in Canada and I am sure that there would be a vast audience that would be interested in this.

    1. shifrachester@gmail.com Post author

      Hi Geoff,

      Oh, I’m so glad you hopped over from LinkedIn. How wonderful!

      I asked the PR people for POV/PBS for this film and here is their response. But before I copy and paste it, I know that the MS Society of Canada retweeted my post on Twitter, so I’d also suggest you contact them as well.

      Thank you so much for reading my post, and I hope you enjoy the movie as much as I did. Let me know what you think!

      Here goes:
      ” If the person visits http://www.pbs.org/pov/wheniwalk, he/she can then
      click ³check local listings.² I don¹t know what part of Canada, but
      WNED-TV in Buffalo reaches Toronto; it airs on that station on June 29 at
      10 or 11 PM, I believe. In Seattle, which reaches Vancouver, KCTS is
      airing it on June 23 at 10:30 PM. We will also be streaming the film from
      June 24-July 23.”

      Best always~
      Cathy

  7. wendy casillas

    cant wait to watch im putting in my phone so the day of the movie my alarm will go off ,ms brain would forget!!

    1. shifrachester@gmail.com Post author

      Thanks, Walker. I know you know better than most people of the hardships encountered with MS. Primary progressive is a type of MS that is unforgiving and cruel. I hope viewers take away Jason’s indomitable spirit, and how he is using his abilities to make a difference.

      Let us all pray that better medications and modalities are approved soon for PPMS.

    1. shifrachester@gmail.com Post author

      You are more than welcome, Marci. He is a testament to the human spirit and he gives us all strength despite the cruelties that he faces with his MS. Bless him, and you.

  8. Terry

    Thanks, Cathy, for sharing this review with those of us who missed it last week. I will share this as well, so that more with MS and their family and friends will be aware of it. Another well-written piece of yours!
    Terry recently posted…June!My Profile

    1. shifrachester@gmail.com Post author

      Oh, I am so glad you jumped over here to read this review, Terry. I really wanted you to see it! Thanks for leaving your comments. Let’s keep on spreading awareness and educating other all about MS.

      Best to you always~
      Cathy

  9. David S. Davis

    I pray and hope Jason’s film will open a window to show people that do not know the issues we endure each day dealing with MS and other disabilities. I know this film will be like looking into the mirror of facing my own issues day to day, and that’s a big part of our own process of healing in our own journey. When some one goes through a disability of any kind, it is a great burden on the whole family…it’s not just you having the diseases, it the husband, the wife, the girlfriend, the boyfriend, etc. I know Jason promises us and eye opening revelation of all theses issues during his 90 minutes documentary. He reminds me of the deep search we all go through of finding answers, and looking anywhere and to anyone from some peace of mind. These pass couple of weeks, I have been so inspired by the life of Jason DaSilva..every since I heard of him, I have been looking up every piece of information online to peek just a little window into his soul. I already feel ..with out being broken..we can’t receive blessing. It’s the times when we can’t put food on the table or not having enough money in the bank to pay our bills. These are the times when cracks and craves of our life fill up with something beyond ourselves.That one extra step, to see the invisible. Even though we wake up with aches and pains, we still get up. When everything is closing in all around us, we find that last bit of inner strength to push through….That’s how Jason makes me feel right now, he is so inspiring..

    1. shifrachester@gmail.com Post author

      Oh, how marvelous, David. You are also an inspiration in your own way. Your gentle strength reminds others that no matter how hard life gets, there’s always a way to use our abilities for good. Bless you.

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