"When I Walk": A young filmmaker documents his journey with multiple sclerosis

“When I Walk” (2012), by Jason DaSilva, is the young filmmaker’s account of his own battle with multiple sclerosis (MS).

This is an autoimmune disease which tends to strike women more often than men.  It is not the same thing as ALS (which struck Stephen Hawking).  I recall, sitting in church in MCC Dallas in the early 1980s, when a woman got up and announced from the pulpit that she had MS, and sobbed with her partner.

  

DaSilva has made a number of innovative small films, often overseas, including “Twins of Mankala” (short, in Kenya), “Olivia’s Puzzle” and “A Song for Daniel”.

In 2006, Jason started noticing weakness in his legs and was diagnosed with early MS at age 25.  In December, on a tropical beach, he suddenly couldn’t get up after a plane flew over them – an incident caught on camera.  Friends helped him up.

The film, sometimes with animation, documents his progression into disability, needing a walker and then a motorcart, as he lives in the East Village in NYC (maybe not too far from the Ninth Street Center, which I used to visit in the 1970s).  He tries a kind of procedure (a catheter from his leg to his neck) to open some veins and reduce inflammation and it helps only a little.  Still, he travels, to India and then particularly to Lourdes, France.   I visited Lourdes in May 2001, and saw the pilgrims, and also saw teens do a dance on stage.  I had visited Fatima in Portugal in 1999.

There’s a scene in the Guggenheim Museum in NYC, on 5^th Avenue.  I visited the Guggenheim in Bilbao, Spain in 2001 (shown in the 1997 Bond film “Tomorrow Never Dies”), but I don’t think I’ve visited the one in NYC.  I will try to do so the next time I visit NYC.   I’ll need to do that to ride up the Freedom Tower when it opens.

  

He builds a relationship with a young woman, who says she is attracted to him because of a certain “softness”.  They marry outdoors in a lower Manhattan park.  In fact, I passed such a wedding one time on a trip to NYC;  maybe that was his!   Toward the end of the film, they have a baby.  Actually, Hawking had biological children.  One of Morgan Spurlock’s films ends with his showing his wife’s delivery.

  

My own history is one of possibly “mild” disability, being much “weaker” than a male should be, and possibly relatively unattractive by some people’s standards.  But one time, around 1972, a particular friend’s wife suggested that I should play a different chord, grow a beard, hippy bangs, and carve tattoos to attract women.  I found the idea offensive, although I didn’t show it.  I was not willing to consider an erotic relationship that somehow made something “all right”, even if I can see that this is in some ways a puritanical attitude, with disturbing implications.

  

   

The official site is here   (Sundance Selects and Netflix).  I watched it on Instant Play, but he DVD is available.  Did I miss this in Tribeca in 2012?  I’ve heard of it before.  Is the director’s name based on Portuguese (Brazil), or Spanish (Puerto Rico)? 

    

Wikipedia attribution link for picture of Lourdes   Second picture: East Village, mine, 2004

Note WJLA-7 in Washington has an article on pregnant women with MS, and it seems that the baby sometimes shows symptoms of the disease (passed through the placenta) which then resolve, link here.  There was also a story of two brothers, one with MS and another with myasthenia gravis, also autoimmune. The brother with myasthenia gravis was treated by thymus removal through a new lathroscopic procedure at Georgetown University Hospital in Washington DC.  It would be interesting to see if such treatment could work for MS also.  A family friend died of MG (male) at about age 70 when I was growing up.