Wednesday, June 24, 2009

Susan and Soho

Most of Video Blog #13 was shot almost year ago when Susan first returned to NY from 5 years in LA. She remembers when we used to go out dancing, and when she says that seeing me now is "a little shocking", well ... what DO you say? Its like I'm living a version of that film "Benjamin Button" , only physically mine is on "fast forward", while mentally, to myself and Susan and my Mom and brothers and friends, I'm just regular Jason-at-30. Its hard for all of us to put those two realities together. They seem so incongruous. Those shots of me moving around the kitchen, for example, that's now over in the "way it was" category.

To give you an example of what its like to try to process all this, I was on the phone with a friend,yesterday. While we were talking, I saw someone needing help to get into my apartment building, so I said to my friend, "I'm going to get the door. I'll be right back." And, of course, by the time I got "right back" my friend was laughing and having visions of Buggs Bunny cartoons from the 50's with a happy turtle who would "run-off" to get something and return to find everyone sleeping with cobwebs around them. "I'll be right back", indeed! Sometimes there is nothing to do but laugh.

Video Blog #14
We didn't give this video enough time. We did get a nice cross-section of Soho, where I work, but too small a sample to show the ignorance around MS. Or maybe it shows how important education and cultural context are, when one couple associates the question of MS to that deadly Central American gang "MS-13". One of my friends keeps bugging me to see the South Park episode "Krazy Kripples" from Season 7 (702) when Jimmy and Timmy decide to start a gang called the "Crips". Yeah, as I said in Blog #13, "I'll get right to it."

Thursday, June 18, 2009

Tribeca Film Festival

Video Blog #17 is kind of like a super condensed version of my life since being diagnosed with Ms in 2005. Normal inconveniences, like the elevator being out of order, have become transformed into time-consuming and exhausting obstacles. If you can imagine living the fast-paced NYC life with your shoe-laces tied together and your legs encased in heavy molasses, then you have a small idea of the physical strength and intense concentration it takes to navigate the city and keep schedules. That scene with the disabled elevator was not a set-up for this blog. That was just what was happening that day in my life as I set out for the Tribeca Film Festival. It was just a “normal” day. I’m now preparing to move to a first floor apartment, because that “normal” and my “normal” don’t fit together, anymore.

And then there’s this third “reality” of the film world, where everyone is intense and beautiful and smiling. So, in this blog, my body isn’t working right and the elevator isn’t working right, and suddenly here I am in the film world where everything works out right by the end of the story, and there’s almost always a “happy ending”. I’m standing on the “red carpet” with all the photographers calling out: “Jason, Jason! Look here!” and I’m smiling and nobody has any idea what it takes for me to get there.

Tribeca Film Festival was started by Robert DeNiro to rejuvenate the spirit, culture and economy of lower Manhattan after the attack on the Twin Towers. The speed of its schedule is crazy. Living in NYC is difficult enough for its speed , but Tribeca is so much worse.

So I’m standing there with my walker. A Tribeca publicity person announces: “This is Jason Dasilva. He’s one of our film-makers.” and the flashbulbs start popping. That’s what the press does. They just shoot anybody on the red carpet. I stood there with my biggest “in your face” smile. I didn’t care about the “red carpet”, personally. I just didn’t want to be discriminated against in any form. I was insisting on being seen like anybody else. I went in front of those cameras to get a picture for my camera. How often do you see someone with a walker in front of a whole bunch of press? Smiling like a fool.

So, the “red carpet” scene is meant to be ironic, because in reality, I don’t want When I Walk to just be me showing myself for the camera. I want people to have a deeper insight into what I’m dealing with and what I’m feeling. That’s the exact opposite of standing on the “red carpet”.

I don’t mind being criticized as an artist, but I don’t want anyone to put a “frame” around me. Being framed as either “brave” or as “disabled/not normal” … both of those frames deny who I am as an individual human being. At some point for almost everyone, life takes away one of the important ways we define ourselves. For an athlete, it could be that day when he or she can no longer compete. For someone else today, it could be unemployment, not being able to provide security, becoming dependent. For another person it may be divorce or an addiction that takes control of you, or another disease like cancer or Parkinson's. Its not just an MS problem. Its the problem of who we are and how we live when our personal frames are broken.

My brother Leigh shot this footage. I think this is really good. The blog is running a little slow because Leigh is involved in getting Canadian funding. And Miguel Valldes is involved in logging all the tapes and putting together an assemblage that we can begin to transform into a rough cut.

And I’ve just become involved with MCCANN Worldgroup ( to create a database of worldwide (NYCto start) handicap accessible sites that disabled business travelers and tourists can access on their smart phones and I-Pods as they move out into the world. Because making us visible and opening routes for us to participate in “normal” life is more than just this one film. It is what WhenIWalk, Inc is all about.

Monday, June 8, 2009

India and How It Happened

Video Blog # 15 is a compilation of stuff I shot India over the years.
This is not a production video. It is just a way of us getting to know
the footage we have shot in the past. The music is by an old band mate
of mine, Frank Henville, so it’s a little nostalgic and more personal
for me. I think about the old days (Malchiks days: see video journal #
3) and the journey I'm on. In both the video (in India) and sound (my
music playing days) I’m visiting places that I’ve been to before when
I was fine. Using that phrase, “when I was fine”. Those words are
always tricky. Part of this film is about struggling with that
self-definition: is something wrong with me or am I still me? I have
to question this all the time. OF COURSE, I’m still me, but the
changes happen so fast, it sometimes messes with my self-identity.

ve been to India 4 times: once as teen, twice in my 20’s, and again
in 2008. A lot of people, when they get MS, don’t have that luxury to
keep traveling. I didn’t want to be cut off from the world when I got
MS. My family has been traveling for generations and it is big part of my
personal identity. I hope I can inspire others to keep moving
and keep being seen out in the world, doing the normal things they’ve
always done, too.

Video Blog 16

In this blog, I wanted to give a small lesson on the epidemiology of
Multiple Sclerosis, and how I compare to a typical person with MS.

The average risk for developing MS in the United States is
approximately 1:1000. That’s 0.001%. Primary Progressive MS, the type
I have, is in ten to fifteen percent of individuals that have MS

So, this means that the probability of me getting Primary Progressive
MS in the United States were one 1:10,000 or .0001%. Pretty small

Most people experience their first symptoms between ages 15 and 50.
But the "Primary" subtype is more common in people in their 50s. I was
25 when I got diagnosed.

On average, women are three times more likely than men to develop MS. Hmmm…

Let’s not forget that MS is more prevalent among those of northern
European or Scandinavian ancestry. People living beyond the 40-degree
mark north or south of the equator are far more likely to develop MS
than those living in warmer climates near the equator. Caucasians are
far more likely to develop the disease than Africans or Asians. And my
family roots are in Goa, southern India, which is why I visited my
grandfather’s brother Tio Jose in Video Journal #2, to find out more
about my family’s medical history. He “never saw anything like this

Ok, that’s fine, but here’s the kicker. Though I grew up in South
Florida, well under the 40-degree mark, my family moved to Vancouver,
Canada when I was 14 years old.

Studies show that if someone migrates before the age of 15, the
migrant acquires the new region’s susceptibility to MS. Researchers
attribute it to intake of vitamin D and sunlight. Vancouver is above
the 40-degree mark.

Also, at the age of 16 I discovered photography. Handling and
breathing those chemicals all day with teenage intensity in a poorly
ventilated darkroom didn’t help my immune system.

And I‘ve inherited my family’s tradition of being on the move. From
Goa to Uganda to Kenya to Ohio to Florida to Vancouver: my family has
been on the move for generations. I, myself, have been to so many
countries where immunizations were required against diseases like
malaria and typhus. Even after my diagnosis I revisited India for the
third time and traveled to France. Traveling is part of my
self-identity: my love affair with the world.

And lastly, the coup de grace, perhaps, was that the Twin Towers were
attacked soon after I arrived in New York City, and since I lived
nearby, I naturally joined in the effort to provide assistance to the
rescue workers. I was covered in the dust for days.

If you look at the causes of MS like target practice, I hit the
bulls-eye every time.

I just wanted to give you a little insight into some of the factors
that are related to this presently incurable disease. I do not
consider contracting MS a tragedy. In its original dramatic form, a
tragedy presents a “main character [who] is brought to ruin or suffers
extreme sorrow, especially as a consequence of a tragic flaw, moral
weakness, or inability to cope with unfavorable circumstances.”

This does not my story and I do not choose to define myself this way.
Through our innocent and life-affirming choices, my family and I
certainly bear great responsibility for, perhaps, the main causes of
my contracting this terrifying form of MS. But to label it a "tragedy"
sensationalizes my present life, a if I was nothing more than a heroic
character in a play by Shakespeare or Sophocles. And I am not a
“character”. I am a human being. A really, really bad thing has
happened to me, and most often it is a really, really heavy burden.
But, as the saying goes: “Bad things happen to good people.”

To sensationalize MS by calling it a "tragedy" removes me from my
place in the company of other “normal” human beings. One person gets
cancer. Another gets Parkinson’s. Another, early Alzheimer’s. Another,
becomes paralyzed by a spinal cord injury while skateboarding or
horseback riding. Another gets mangled by a drunk driver. We just walk
along, living our normal lives, and suddenly, of all the people on the
sidewalk, that piano falling out of the 40th floor window lands on her
or him or me.

This is not “tragedy”. This is simply a big part of what it means to
be alive. One of the reasons I am making this film is to reclaim the
place of folks with MS within this greater definition of what it means
to be “normal”. Despite it all, I still carry on living my life, doing
the things I’ve always loved doing. I don’t live a “tragic” life. I
live my own.