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Posted Feb 11 2011 12:26am
Supreme box camera
Image by al_dekleine via Flickr

I've found that Multiple Sclerosis can become an all-consuming obsession to those suffering from it. Or, to be more precise, to this person suffering from it. Between coping with the marching progression of the disease itself, keeping up with doctor’s appointments and phone consultations, dealing with insurance companies and disability issues, searching for and reading the latest and greatest in MS research news, and tracking the ever-growing conflict being waged over CCSVI, MS can commandeer not only your body and your mind, but your time as well. I'm always preaching about not letting MS define you, and I thought I'd made a pretty good effort at avoiding that trap, but it occurs to me that the pile of unanswered e-mails, the growing number of phone calls that need to be returned, the stack of books and magazines I'm always just about to get to, and the dozens of unwatched shows on my DVR (almost all about archaeology, World War II, mythical creatures, UFOs, or quantum physics) would loudly argue otherwise.

Sometimes it's imperative to just tear yourself away from the addictive gravity of the MS universe, and lose yourself in something else. Family, friends, and loved ones are always a nice distraction (I'm making a crass understatement here), and the football Giants and baseball Red Sox deserve rapt attention. I also have one other passion that I can get entirely immersed in, and it's something that Multiple Sclerosis stole from me, but then, completely unexpectedly, gave back.

Before getting sick, I spent a lot of time on photography. I caught the photo bug early in my teenage years, and then later got a degree in Film. That degree led to a career in television and video production, and when I started out in "the biz" I could very often be found with my eye pressed hard against the viewfinder of a pro video camera, shooting all kinds of cool stuff. I wound up taking video from an exciting variety of flying machines, including hot-air balloons, the Goodyear blimp (three times!), police helicopters, tiny airplanes, and even once from a vintage World War II B-17 bomber. I shot minor-league baseball games and alligators in the Everglades. As my career advanced, I moved from cameraman to video editor to producer, playing with and manipulating images all along the way. Eventually, though, I wound up being a boss, and by necessity dealt more with clients and the good people working in my department than with the images themselves.

To make up for the lack of picture taking and making in my professional life, I went back to snapping away in my private life. This was right around the time when digital photography started to really take hold, and, unlike when I was a kid, when cameras used film, which meant relying on photo processors and darkrooms, suddenly you could do everything photographic all by yourself. The magic of Photoshop puts an entire darkroom in your computer, right at your fingertips. The camera became my constant companion, and all of those years spent looking at and working with images professionally left me with a pretty good eye. I won a few online photo contests, and happily became an active amateur photographer. I've always been drawn to the past, and even in the digital age I found myself becoming fascinated with antique cameras that use good old film, and with cheap plastic toy cameras that make images that feel like they were snatched from a dream.

Here are a few photos I took back in my healthy days. The square ones were taken with toy and/or vintage cameras. Click each thumbnail for a larger image:

And then I got sick. A slight limp in my right leg soon evolved into weakness in my entire right side, which is quite inconvenient for a right-handed person. To my utter dismay, within only a few years I could no longer hold a camera to my eye, or push a shutter button. MS had stolen photography from me, and in the early years of my disease this was just about the greatest loss the disease meted out. I could still work, could still walk (with increasing difficulty), and, with adjustments, could still live a semblance of my old life. I even learned how to use chopsticks left-handed. But, although I tried, taking photos soon proved to be impossible. Attempting to operate the controls of a camera while framing a shot one-handed was extremely difficult, especially since that one hand was very often frantically reaching for something to grab, and eventually was needed to hold a cane.

Thanks to the aggressiveness of my disease, a shiny new set of wheels soon became part of my life. Not the Porsche roadster I'd always dreamed of, but a Quantum Q6000Z power wheelchair. After some initial trepidation, I became quite fond of the electric beast, which suddenly expanded the size of my world from my 850 ft.² apartment to the 20 or so miles the chair will go until the batteries give out. I know it's almost verboten to say, but I actually found driving the thing to be, well, fun. I could zoom past pedestrians on city streets, explore the many nooks and crannies of Central Park, and cruise along the trail next to the Hudson. Pretty good, and a big improvement over the pathetic few painful steps I had been reduced to.

My wife Karen soon started suggesting that I figure out a way to rig a camera up to the chair, so that I could start taking pictures again. Being grumpy and contrarian, I always muttered one excuse or another about why such a scheme would never work. I think I was afraid that even if I could figure out how to secure a camera to the chair, the results would suck, and that would make me feel worse than not ever having tried, proving that despite my best efforts I was somehow diminished. Still, Karen kept up the pressure, and I finally gave her the go-ahead to get me the required equipment for Christmas ( click here to see set up ). After a few test runs, I started noticing that the results weren't all that bad. They were somehow different than my old shots, which were more off-the-cuff and improvisational, but shooting from the chair required me to work within a set of some pretty stringent restrictions, and doing so forced some creative discipline on me.

Almost inevitably, I think the MS experience also changed the nature of my shots. Certainly not in any conscious way, but I now seem to take photos of that are a little bit more contemplative, and some have a kind of turbulent tranquility to them. More thought is put into each shot, an attempt to inject some beauty into a scarred existence.

Though I got very sick this past September, and was out of action until the beginning of November, I did manage to get to Central Park a few times later in the month to capture some autumn scenes. Here are a few of them, along with a couple that I shot this summer (including one of Karen, who gets full blame for this madness). Hope you like them, I'll be adding some of them to the Wheelchair Kamikaze photo gallery on the left side of the page. Click thumbnail for a larger image:

Like this blog? Please consider voting it "Best Patient's Blog" in's "Best Medical Weblog" contest ( click here ).

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