I did what I could until the very end.
(Shit! That just came out! What is THAT supposed to mean? I‘ll get back to it at the end of this Blog).
I was 25 years old. You’re not supposed to stop. I just took the money I made from Song for Daniel and bounced it into another film. I wanted to go to Africa before my symptoms got any worse. I knew I was “playing tag” with Fate , but I didn’t want to pay attention to my MS because there’s no medical treatment for Primary Progressive, anyway. My despair moment didn’t happen until 3 years later.
So, here I am, over in Kenya in the middle of nowhere. This is a lot worse than getting around Long Island in a New York summer. My mom and brother came with me. They had my back. I couldn’t have done it without them. I remember the bus to take me to the village breaking down and having to walk. By the end of the day my legs couldn’t support me to walk back home, so I had to rent a bike. There was no electricity or running water, so keeping cool was another big issue. I’m really glad I went, but it was definitely not easy to do.
In the back of my mind, I was aware of the death of spontaneity in my life , of my “run-and-gun” philosophy of documentary film-making. I had always defined myself as a photo-journalist, rather than a film-maker, spontaneously recording what I encountered.
I still don’t get it. I found this film to be the one film I shot the best: the composition, the colors, the visual style … everything was perfect. I don’t know what the reason was. Imagine looking through the camera with MS. My vision was really blurry and faces, scenes looked fuzzy.
But when I got the film back from lab it was just what I wanted. It really helped my confidence in my creativity. I was simultaneously losing my sight and gaining confidence in my vision. This was the first film where I used a tripod. I was forced to use “sticks” because I couldn’t hold the camera anymore. The gift in this is that each shot was perfectly framed.
I did this film really fast. Everything I did was “seat of the pants”, back then. If I tried to do it now I couldn’t. My premonition about this being my “last chance” was almost true. I was only able to shoot one more, a post-Katrina film with a human jazz theme: “From the Mouthpiece on Back”. I’ve got to give “props” to PBS for buying these films. If they hadn’t, I would have gone broke and probably wouldn’t be a film-maker today.
I realize now there’s been a benefit. Getting MS forced me to focus, be controlled. Its something most film-makers go thru, part of working on bigger budget films. And it is what most folks go through as they age out of their “immortal 20’s” and slowly grow into themselves. There’s no more drinking, now. I still go to clubs, but not all night long. I’m conscious and careful about how I use my energy, and make choices to not waste it. There’s this old Ringo Starr song with a chorus: “No, no, no, no, I don’t do that no more. I’m tired of waking up on the floor….” It’s a cute song, but waking up with MS is not the same as waking up with one more lousy hang-over.
A friend who is 65 imagines its like going from being 25 to being a not-so-healthy 75 in five years. Maybe that’s right. With my rapid loss of vision and mobility and no medical treatments and no periods of remission with Primary Progressive, its hard to keep in mind the statistics:
In 1936, only 8% of patients were reported to survive beyond 20 years after onset of illness
In 1961, over 80% of Multiple Sclerosis patients were reported surviving to 20 years after onset of illness
2002 – A patient with Multiple Sclerosis can expect to live to average population life-expectancy minus seven years (mean life expectancy – 7 years)
And that “Apart from a minority of people with “aggressive” multiple sclerosis, life expectancy is not greatly affected, and the disease course is often of more than 30 years’ duration.” http://clinicalevidence.bmj.com/ceweb/conditions/nud/1202/1202_background.jsp
Does 30 years sound like a long time to you? Hell, yeah, if you’re 75.
But I promised in the beginning to say something more about that loaded opening sentence:
“I did what I could until the very end.”
When I finally entered my period of despair, one of the things I had to mourn, besides my new relationship with mortality, was the loss of my “run-and-gun” creative style. I even used to prefer working with real film, not digital images … that’s how physically intimate the experience was for me.
Now I am dependent on others to do the camera-work. I have lost the physical intimacy that my documentary style held for me. I have had to learn that my creativity and my vision transcends this physical connection. This goes along with my new sense of what it means to make “choices” and a new feeling of the power of being “focused”.
I know this is all good, but I sure would like to take a “day-off” once in a while, and just let it all hang-out once again … even if I had a really bad hang-over in the morning.