When I Walk: An Honest Look at Progressive MS

What does MS look like?  Does anybody really know.  Certainly, there is the image of a person who may use a cane or wheelchair which do make it easier to see their disability.  Sometimes weakness of limbs or tremors can be seen on the outside, but what about numbness, bladder dysfunction, or cognitive difficulties?  Not so easy to see.

Consider the different types of MS, each having their own subtle characteristics, but without exclusive challenges.  While the general public may associate wheelchairs with advanced disease, chairs and walkers aren’t used only by those who have lived with the disease for many years.  The person newly diagnosed with relapsing-remitting MS may as easily need to use a wheelchair as someone with progressive MS for a period of time.  But the difference is that those with RRMS may fully regain the use of their legs after the acute attack on their central nervous system calms down and healing has begun.

How MS is portrayed in the media varies greatly, from celebrities who talk about pain, to inspiring individuals who climb mountains, to characters on TV shows who are unable to care for themselves in some way because they have MS....often in a wheelchair.  I’ve been to a number of MS meetings and to be honest, you can’t easily pick out the person living with MS.  It’s just not that easy to spot….if you don’t know what to look for.

Besides what an MS patient looks like on the outside, how does the person look on the inside?  I’m not talking about the brain as seen on MRI scans.  I’m thinking of what the journey of having MS looks like and feels like to the individual and his/her family.  That’s not something which can be captured in a single interview or a cameo in a TV show.  MS changes over time.

When documentary filmmaker, Jason DaSilva, started having trouble walking 8 years ago, he was diagnosed with primary progressive MS at the age of 25.  Jason turned the camera on himself and began chronicling the relentless effects of the disease in an unflinching, uncensored manner.  During the course of the film covering his first 7 years with MS, Jason goes from being wobbly-legged on the beach, to using a walker in public, to relying on a scooter full-time.

Jason’s film, When I Walk, premiered at the Sundance Film Festival in January 2013 to rave reviews.  In the film, Jason exposes himself, heart and soul, with an honesty that you don’t often see on screen.  We experience the physical and emotional roller coaster as MS begins to affect Jason’s vision and take away the use of his hands, while Jason searches for answers and possible cures.  We witness the joy as Jason finds his soulmate and they get married and begin a family together.  We can also hear the dark sadness as Jason explains that he couldn’t go with his wife to the hospital when she miscarried because accessible cabs were not available.

When I Walk may make some people uncomfortable in its frankness as it reveals the emotions of being trapped inside a body which increasingly fails the occupant.  However, it isn’t a gloomy, woe-is-me tale.  When I Walk captures the joy of living in the moment and is a testament to courage, love, and the human spirit.  We finally get to “see” what MS looks like on the inside for one young man and his family struggling with MS.

Appearing at Sundance was great.  But independent filmmakers are responsible for raising the funds and doing the work necessary to get the film shown in movie theaters around the country.  Jason has started a Kickstarter campaign with a goal of raising $27,000 by April 3, and as of this writing has less than $10,000 to go. He’ll use the funds to do marketing, advertising, and promotion for the film, as well as pay for printing and duplication costs of the film and its trailer.

If you are able, please consider chipping in as little as one dollar to help kickstart When I Walk into a theater near you, and thus help a fellow MSer tell his story and show the world the realities of living with MS and the courage it takes to battle the disease day in and day out. Or, you can help by sharing this post, Jason’s story and When I Walk with your social network.  Getting the word out as quickly as possible is of upmost importance.  Thanks.

Lisa Emrich | Follow me on Facebook |Follow me on Twitter | Follow me on Pinterest

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