Videos 9 and 10 are like my emotional front and back.
I've lived seeking new and, importantly unexpected experiences. I guess it runs in my family. For generations, my family has moved from Goa to Karachi to Uganda to Kenya to Florida to Vancouver (mom) and Hawaii (dad). I have visited China, Thailand, France, India, England, Cuba, Scotland, Australia, New Zealand, Fiji, Holland, Puerto Rico, Mexico, Barbados, St. Lucia, Kenya, and St. Maartens….so far!
What do I do with the medical knowledge that all the travel vaccinations I took in order to travel so much has probably contributed to my getting MS? I lived my life. Discovering things I do not know about myself and the world is how I’ve always lived my life.
When I’m feeling normal good about myself, I experience MS as just another part of my life of being surprised and making new discoveries.
But it would be a lie to say that there are days I just don’t want to get out of bed. There are days when my life feels much closer to “The Diving Bell and the Butterfly” than to a young film-maker living on the Lower East Side of Manhattan. All those meetings at Tribeca Film Festival, etc.: everyone telling me how “brave” I am, applauding me - they don’t have to feel the existential loneliness that sometimes creeps in from the other side.
All those beautiful statues, those perfect bodies, that “great” art in video #9. What does any of that have to do with me? At times like these, I feel I’m on the outside of life, looking in.
Then I return. I get together with someone like Kumar Pallana (who has played in Wes Andersen’s films) and we improv in the cab:
I tell him I have MS and he replies: “I don’t care what you had for breakfast…”
Old guys, like Kumar and my great uncle Tio Jose in Video #2 , they know life changes you, messes up who you think you are, takes controls away from you. I love being with them because they know I am still me inside here. They know “normal” is just a social convention. They have lived enough to no longer be distracted by labels like “disability”. They just see me.
My body is dragging my mind into this “elder” wisdom, while my mind drags its feet and keeps yelling “What about our sex, drugs and rock-and-roll phase? ”
Then life interrupts the fun and announces my next stop. The cab door opens and its time to get on with my life.