Foibles, challenges and escapes
It’s around this time every year, for the past 4 or 5 anyways, that having been diagnosed with MS brings on the highs and lows that have come to set the tone for who I am; Or at least…who I try to be.
In my daily life I live with constant reminders of the cards that were dealt to me back in November of 2006. But while I’ve had to play a few other bad hands in my life though time, this isn’t a bad hand that my brain can just file away in a locked box, for the sake of self-preservation. It’s a living, breathing thing that wears like an ill-fitting suit. And for no reason, other than pure logistics…April is a month of looking into the barrel and working hard not to flinch. And all this begins next Saturday.
A lot of really good people are going to gather in a park back in my home town, and try to raise money towards research that may lead to finding a cure for MS in the future. And there is nothing un-noble about that. In fact…if it weren’t for these kinds of functions, my doctor would not have had the knowledge 7.5 years ago to get me on any type of treatment that helped. And the outlook for my life would have been very different. Which makes my feelings about next Saturday seem a bit dickish…but being that I promised myself when I began this Blog thing, that I was always to be honest, attending that walk is really the toughest time I have in the whole 365 days that fill my year. And that’s because of…FEAR.
We’ve all heard stories of men and women who have done the extraordinary in the face of overwhelming odds or horrific events. But when I walk around during that event, and see those who are now not like I am…I honestly don’t know if things should really go south for me…if I will be able to handle it. I honestly…don’t know. If I can no longer see through my other eye, and not feel what I do when I’m holding a camera, for me, it would be like losing a kid. If I could no longer drive my truck, it would feel like a prison. All of these things, plus others, spring to the surface as I walk amongst those, who but for a simple progression in degree…are me…bring about a fear in me that makes me want to run and hide. But there is no place to truly do that. No amount of wishing or deigning “It ain’t gonna get me” works when you’re looking down the barrel of what is real. And should that day come, what will those people who have told me that I inspire them feel…If I break?
Through the years, I’ve tried to figure out a way to weasel my way out of not going. Even though it’s important to the people who count on seeing me there, the weaker side of me speaks to keeping my head down and staying away. After all…isn’t it smarter to stay clear of the business end of the gun pointed at you? But every year, I go back…and will do so until I can’t.
April also hold for me my chance to go out and do the thing I love to do most in life…second really, after hanging out with family and friends. And it too is a weekend full of looking into limitations and challenges, but has more to do with a pure love. Yes…racecars are coming back to Long Beach J
What I love about grabbing a camera and heading out to play with it would take on a mind of its own and pages of type, trying to explain it. Through my life, it’s truly one of the most personal things I do and while there have been others, who have enjoyed looking at them, what I get from doing them is not easily explained. Maybe it’s a sense of adding permanence to my life through capturing a moment of me being here or maybe it’s something more. But doing it seems to have had a newer facet cut into it in recent years because of the simple fact…someday; I may not be able to do it. My MS has seen fit to take away the vision in my right eye, as well as mess with the conduit my brain sends the signal down to my hands in. I’ve missed shots that while looking through the viewfinder, would have been 100X better had my finger pressed down on the shutter release when my brain told it to. Images have been blurred from having my hands shaking because of getting myself over heated. I’ve had to shoot things from angles that make no sense to some…but they weren’t there to see me leaning up against whatever was handy at that moment to be stable enough to even try to get the shot off. I’m not Superman…or even a professional photographer, but should the day come and I can no longer do this thing I love to do, my OLNY hope in doing them, is for those who may see them will see ME in them. Because life is less about how I look, then it is about what I’ve seen and felt. This is really all I have to leave to anyone.
Someday…my worst fears may come to be. I’ll get a dose of what that may be, in the coming week. I’ll spend the day being scared and looking square down the barrel of something I do not wish for anyone. And harsh truth be told…I’ll find time, as I’ve done before, to sneak away for a bit and cry; (This being honest is tough) And I’ll get over it. Then the following weekend, I’ll head back out and look square down the barrel of viewfinder with a bright shiny Indy Car heading right for me. I’ll have to take breaks and seek out shade and places to sit or lean against. My pictures won’t be published in RACER magazine. And come Monday morning I’ll be paying for pushing myself to do things that maybe a smarter man wouldn’t do…But I’ll pay that bill. And then I’ll head out to take pictures of my friends surfing, or my family BBQing or the flowers, rocks, oceans and other images I want to leave behind for people. They say each person dies two deaths. The first when they quit breathing and the second the last time they are thought of. Maybe, by leaving behind images of my life…of the things I’ve seen…will be the meaning behind truly beating MS