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
symptoms.

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
odds.

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
before.”

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.”
http://www.answers.com/topic/tragedy

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.