Conquering Fears Through Photography

Well, it’s two weeks short of a year since I last posted new photos to the Wheelchair Kamikaze photo gallery. A long time between photo posts, so long, in fact, that relatively new readers might not even be aware of the specifics behind the WK photo gallery. For those who don’t know the photo gallery “back story”, here's a quick summation.

Back in my healthy days I was an avid amateur photographer, always snapping away with a variety of cameras. When I got sick my right side quickly weakened, making shooting photographs (along with a whole bunch of other things) increasingly difficult. I tried to keep at it, but within a few years, much to my great frustration, I was forced to set my cameras aside as shooting with them simply became too difficult, and quite frankly I didn’t have the stomach to come up with workarounds.

Several years passed with my never touching a camera, though I missed photography intensely, until my creeping paralysis crept to the point that my mobility needs required the assistance of a mechanical monster, my wheelchair. Once the beast became part of the family, my wife started bugging me to figure out a way to attach a camera to the thing, so that I could use my good hand to make photographs using a wheelchair mounted camera. Being an obstinate putz I steadfastly resisted her suggestions, although she did manage to wheedle out of me some ideas of how I might go about setting up such a rig. My wife's Christmas present to me that year was, as you might’ve guessed, all the components needed to make a wheelchair mounted camera a reality: a new digital camera with a flip out viewing screen and a little tripod with flexible legs that I could wrap securely around the arm of the wheelchair (to see the setup, click here. Though the gear has changed in the intervening years, the basic setup remains the same.)

Soon enough I was back in business, zooming around the city (mostly Central Park), a half paralyzed shutterbug on wheels. The resulting photos turned out surprisingly well, and in addition to shooting stills I also made some videos. Thus, the Wheelchair Kamikaze blog was born, more a place to showcase my photos and videos than the repository of written rants and raves that it has evolved into over the years.

So, why haven’t I posted any new photos in almost a year? The short answer is that I haven’t been doing much in the photographic department these last 12 months. The longer answer is that I haven't been doing much in the photographic department these last 12 months because my disease has continued to progress (as progressive diseases are wont to do), and my “good” left side is no longer so terrific, forcing me to question whether I could still manage certain activities that I had previously taken for granted.

For the first eight or so years after my diagnosis, my left side really wasn’t effected by the disease all that much, but the last year and a half or so have seen it noticeably and increasingly diminished. As it is with all of the insults dished out by the disease, the physical impacts of these new challenges have been accompanied by psychological hurdles as well. If I’m honest with myself the truth is that I haven’t shot any photos, or even processed a bunch that I shot last summer, because I was afraid to find out that I could no longer do so. Manipulating the wheelchair mounted camera takes a good bit of fiddling with dials and buttons and such, and processing photos through Photoshop, even for the minimal amount of image enhancements that I usually do, requires a fair amount of precise mouse work. Rather than try and fail, and then have to deal with the wreckage of that unpleasant new reality, I semi-consciously decided to not try at all, and thus avoid the situation altogether. In short, fear of failure took the wind out of my photographic sails, compounding the physical limitations imposed by the disease with some of my own making.

Lately, though, I’ve been feeling that old familiar yen, at least in part spurred on by the nicer weather as winter turned to spring. I’ve also grown more resigned to the fact that my left side is getting increasingly wonky, and sick of capitulating to the fear that I might no longer be able to do something (photography) that is so tied into my sense of self. The disease is crippling enough, and I resolved that I wouldn’t allow my fears to cripple me further. So, I grudgingly opened up Photoshop and started working on some of the photos that had been occupying my hard drive untouched for the last year or so.

Lo and behold, I found that I can still put Photoshop through its paces, certainly not as quickly and efficiently as before, and only for a couple of hours at a time before my hand becomes unresponsive enough to start freaking me out, but, dammit, once I shook the rust off the results weren’t all that bad. Spurred on by this minor triumph, I bit the bullet and took the camera on a couple of sojourns to Central Park, where I discovered that I can still manage the required twisting and pushing of camera and lens controls. Not for the unlimited hours upon hours as I had in the past, but I was able to shoot almost nonstop for about two hours, long enough to make it a very pleasant and productive afternoon. Sure, my arm and hand felt made of flimsy rubber bands on the way home, but the victorious feeling I felt more than made up for the increased danger I was to pedestrians, since my ability to manipulate the wheelchair joystick was noticeably diminished. I managed to make it home without taking out anybody’s shins or kneecaps, and not only had I been able to take some pretty good photos, but I’d stood up to a big fear and kicked it in the nuts.

So, I now know that I can still shoot photos and run them through Photoshop, at least for today and tomorrow, and for fuck knows how much longer. I’ll just have to take it as it comes. I’ve got some “outside the box” treatment options yet to try, some of which I’ve already written about on this blog. Given the state of the world, with lunatics shooting up parades, movie theaters, and grammar schools, with weather patterns seemingly more severe and deadly by the week, and with a geopolitical landscape that appears increasingly on the brink of widespread violent chaos, it could be that MS is the least of my worries. As somebody much wiser than I once said, “life is uncertain, eat dessert first.”

With that, I present to you my latest batch of photos, long overdue. About half were taken recently, but all have been processed within the last month or so. Most were taken with my wheelchair mounted camera, but a few were shot with an iPhone with a close-up lens attached, including the photos of the dragonfly and the ant in the flower. Though it’s a little tricky, I can handle the iPhone camera with my one clumsy hand, and I’m always surprised at the capabilities of that little device.

I’d welcome all feedback on the photos, positive and negative. Which ones do you like, and which ones suck? Please don’t hold back because of my “conquering fear” thing. Negative feedback is just as helpful as positive, maybe more so. Your honesty will be much appreciated…

Click on the thumbnail image for a larger version.

Fear Factor

I'm scared.

There, I said it.

Actually, the word "scared" hardly suffices; I guess "terrified" would more fit the bill. Fear in copious amounts might as well be listed as one of the symptoms of MS. I've talked and corresponded with hundreds of MS patients, on topics ranging from treatment options to conjecture about the nature of the disease to the day-to-day strategies we employ to simply get by, and though it's often unspoken, all of these interactions share one inexorable feature: an undercurrent of fear, at times more prominent than others, but even at its quietest, always present.

Multiple sclerosis is a diagnosis brimming with frightening features. Before getting sick, most of us had only cursory experiences inside the world of modern medicine. We'd get the flu or suffer an injury, make the obligatory trip to the doctor’s office or emergency room, and after a period of days or perhaps weeks our association with doctors and nurses would come to an abrupt and welcomed end, the arc of our lives resuming their previous trajectories. Getting hit with the diagnosis of a chronic and serious illness, though, transforms us from occasional patients to perpetual ones, and throws some nasty curves into the course of our lives. Quite suddenly we are faced with a Pandora's box of terror, which once opened spews forth a never ending stream of reasons to be frightened. From diagnostic tests to treatment options to uncertain futures, we are bombarded with physical and psychological body blows that sometimes literally leave us breathless.

When I was going through the diagnostic process, I expected that at some point there would be answers. Someone would tell me what exactly was happening to me and how to fix it. After all, it seemed that every day, on television and in newspapers, I was delightfully infomed of one momentous medical breakthrough after another, a steady stream of scientific miracles brought forth by the shiny whiz-bang machine of modern medicine. But once I found myself a reluctant resident inside that machine, entangled in it like a fly in a web, it quickly became apparent that despite all of the fancy gizmos and sometimes impenetrable terminology, there wasn't all that much substance to hold onto. Instead of concrete answers I was offered a fusillade of "I don't knows"and "We're not sure's", all delivered in a rather self-assured manner that was completely at odds with what was being said.

Although I somehow managed to maintain an outward demeanor of rationality, inside my mind reeled with the gradual realization that all those people in white coats very often more resembled the gang that couldn't shoot straight than the intricately synchronized and intellectually enlightened medical gurus whose image popular culture had propagated all these years. I felt lied to and cast adrift, not by any individual but by the system as a whole. How else is one supposed to feel when told that the only treatments available for a disease whose cause is a complete unknown were drugs whose methods of action were equally as mysterious. In the parlance of the 21st century, WTF?

Since I have progressive disease, I can only imagine the fears and anxieties that go along with the relapsing remitting flavor of MS, not knowing when going to bed whether or not your body will be functioning come the next morning. Might you wake up temporarily blind? Unable to stand? A quadriplegic? I am intimately acquainted, though, with the unholy terror of watching yourself slowly get whittled away, gradually withering on the vine as, quite consciously, the losses just continue mount. I first noticed a slight limp in my right leg almost exactly 9 years ago. Since then I've looked on in horror as that leg slowly became useless, even as my right arm and hand followed its example. Now my left arm and leg are mimicking their right sided brethren, and though internally I scream for them to stop, they appear to be intent on enacting a repeat performance, like a good child turned bad by a naughty friend. I've already watched this movie once, and I really didn't like the way it ended. Fortunately, when my right side eventually reached the point of complete incompetence, my left side was there to take up some of the slack. Now that the left side is going, well, let's just say that if I don't figure out how to grow another arm and leg, the situation might get a tad bit ugly.

What demonoid could come up with such a disease, a fiendish thing that forces you to watch yourself disappear but then doesn't have the good manners to finish you off? One of my greatest fears as a youngster, having been eleven years old when the film Jaws came out, was being eaten by a shark. Well, now I am being eaten by a shark, only it's invisible, takes its good time, and somehow lives inside me. And it's a hungry fucker, seemingly insatiable. As Sheriff Brody says in Jaws, after catching a glimpse of the huge man eater in the water, "We're going to need a bigger boat!" Problem is, none of the well-intentioned shark hunters in the white coats seems to have a clue as to where I can find myself a bigger boat. In truth, they haven't even been able to throw me a life preserver. There are no known effective treatments for progressive disease, and even the new wave of treatments now available to treat RRMS are rife with the specter of horrific side effects, bringing with them, along with their increased efficacy and hope for relief, all new reasons to be terrified.

I am constantly amazed at the courage displayed by my fellow patients. Faced with a potentially paralyzing disease, and with it a terror that can be just as paralyzing, we persevere, channeling all of that raw emotion into life, wonderful, glorious, crazy, mixed up life. Despite days when the simplest of tasks seems insurmountable, we forge ahead, maintaining whatever semblance of normalcy we can cobble together, constantly making the adjustments necessary to navigate an increasingly difficult landscape. Through the Internet and in person, we reach out to each other, offering advice, comfort, and often just the knowledge that there are others out there like us, dealing with similar hardships and plowing through the dread only a fellow sufferer can know. I've seen the emotions engendered by MS turned into incredible pieces of visual art and tremendously moving poetry and prose, all loudly expressing that we are here despite the fear, and though physically diminished our spirits remain defiant.

Sheer terror can be an energizing force, as the medical world is learning through the tremendously transformational patient advocacy being done on behalf of CCSVI research, a movement whose spirited core is animated not only by the horror of the damage the disease may wreak, but also at a dogmatic medical profession that seems stuck in neutral, unable to give up on theories that are treated as fact despite there being little or no evidence to back them. Faced with terror at what is happening to them and frustration with the inability of anybody to do anything about it, patients are educating and liberating themselves, and by doing so becoming a powerful force of self advocacy. CCSVI may or may not prove to be the turning point we fervently wish for, the jury is still out, but at the very least the patient movement behind the CCSVI tsunami has flipped the traditional patient-doctor relationship on its head, and no longer will patients placidly accept answers that simply don't make sense. It is the terror born of the disease that has emboldened patients, and all of that focused energy has shaken the walls of a medical establishment that too often puts profits ahead of people, a situation that we the terrorized will plainly stand for no longer.

In the end, when faced with a reality that the "healthy you" would have found just about unimaginable, terror is a completely rational reaction. There can be no denying it, and though sometimes it is felt more keenly than others, it is our constant companion, worn as a second skin, permeating all that we do. But terror need not be a solely negative force. As with all things in nature, the darkness of fear is accompanied by the light of courageousness, as is demonstrated every day by those of us who by sheer power of will make it through another stanza in the face of pain, weakness, and frustration, more often than not speaking nary a word of the terror within. Sometimes we cry, sometimes we scream, but most of the time we just go about our business as best we can, and that may be the most courageous act of them all.