A Patient's Perspective on CCSVI, in Words and Pictures (Part Four)

On July 15, 2011 it was my honor to give a presentation at the Patient Information Day of the Second Annual CCSVI Update Symposium, held at the Crowne Plaza Hotel in Times Sq., New York City. The organizer of the symposium, Dr. Salvatore Sclafani, asked me to write an essay for oral presentation on "A Patient's Perspective on CCSVI", using some of the photographs I've taken from my wheelchair mounted camera to illustrate my talk. I've posted the resulting essay here in four parts, spaced a few days apart. Here's the finale, part four (click here for part one, part two, or part three):

This is one of my favorite photos that I've taken from my wheelchair. It was taken in Central Park, in an especially beautiful section called The Conservatory Gardens. The gardens are truly spectacular, and I'd urge anyone who has the chance to visit them to do so, especially in spring or autumn, when they are bursting with color.

For me, this photo embodies two key elements, freedom and patience. While the element of freedom may be easy to discern, the patience involved in taking the photo is probably harder to detect. When I first discovered this fountain, adorned with sculpted sparrows, I also saw real-life sparrows utilizing it as a birdbath, just as the artist intended. I found the juxtaposition of the inanimate and live birds striking, and hoped to capture a moment that would illustrate the coming together of nature and such a graceful example of the power of the human imagination. In order to capture the fleeting moment caught in this frame, I sat in one spot for about an hour and a half, taking literally hundreds of photos, systematically shooting pictures in rapid-fire mode every time a bird took off or landed. Luckily for me, one of those hundreds of photos turned out to be this one. Patience does have its rewards.

When it comes to the pace of CCSVI research and treatment, I completely understand how difficult it can be to be patient. Those of us suffering from chronic, progressively disabling disease know all too well that the clock is ticking. Any youthful notions of immortality or indestructibility were demolished the moment we were shown MRI images depicting holes in our brains and spinal cords. Stripped of such illusions, a certain desperation can set in, and the desire to do something, anything, to stave off a calamitous future takes hold. This desire can manifest in many forms, from outright panic to steely determination, but every self-empowered MS patient has their radar set to scan the horizon for any new development that might save them from a dreadful end.

CCSVI certainly holds the promise of potential salvation. This radical new approach to looking at MS, offering fundamentally new ideas about how to treat the disease, gives the afflicted a life ring to grab onto, a ring plainly inscribed with the word Hope. But we are yet in the early stages of our understanding of CCSVI and how best to treat it. The treatment procedure I underwent a little bit over a year ago is far different than the procedures being done today, and procedures being done a year from now will likely be more different still. Therefore, while no one could argue with any patient choosing to pursue treatment now, for some the decision to be patient and wait cannot be viewed as a terrible choice. Sometimes, the race does go to the swift, but there are times too that discretion is the better part of valor.

As for the other element prominent in this photo, freedom, well, that is what I wish for every MS patient, everywhere. Freedom from the fear that we wear as a second skin, freedom from the cognitive deficits that threaten to steal our very essence, freedom from the braces, canes, scooters, and wheelchairs that that we use to compensate for our damaged bodies, freedom from the grip of a medical establishment that all too often seems more designed to seek profits than cures. Let us all someday soon alight like birds from a fountain, our sweetest dreams come true, and our fondest desires realized.

Diversions

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 a sensational 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 fashioned 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:

Wheelchair Photo Safari to Unexplored Central Park

I'm lucky enough to live just a few blocks from Central Park, and like many Manhattanites, I use the park as a lifeboat of recreation, respite, and just plain sanity amidst the hustle bustle of both the teeming city streets and the inside of my own head. When I just can't do any more thinking about progressing physical disability, the medical industrial complex, CCSVI, Multiple Sclerosis, or just life in general, I fire up Legs (my wheelchair's name, you know) and head for the park, camera rigged securely to the chair's arm.

One of the major advantages (and, yes, there are definitely advantages) of being in a wheelchair is that the chair is quick (mine can do about 8.5 mph, almost 3 times the walking speed of mere mortals), it doesn't tire easily, and it never needs to pee. Therefore, I've been able to see much more of the park than your average run-of-the-mill walking person. Still, the park is so big that lots of it remains unexplored by yours truly, including, until very recently, two of its major features, the Harlem Meer and the Conservatory Gardens (click here and here for more info on each).

I don't think that most people who live outside of New York realize the sheer size of Central Park. From end to end, the park is about 2.5 miles long, and 3/4 of a mile wide. Most people only explore a fraction of all of that real estate, and when I was still confined to my feet I repeatedly visited the same 20% or so of the Park that was within easy reach of my nonmechanical limbs. Here's a map of the park, with the little red circle indicating where I usually enter Central Park, and the bigger blue circle outlining the area I had not yet visited.

As you can see, the unexplored (at least to me) part of the park is just about as far away from my entry point as you can get within Central Park's confines. I've been meaning to wheelchair it over there for the almost 2 years since I've had Legs, but I've somehow never quite managed to make it, always getting distracted by one Central Park sight or another. The majority of the pictures in the photo gallery featured in the left column of this page were taken with my wheelchair mounted camera in Central Park, which is so rich with interesting geography and people that it could keep a photographer happily busy for a lifetime.

There are parts of the park that are so heavily forested that it's almost impossible to believe that, while traversing the miles of trails within, you're smack dab in the middle of one of the largest cities in the world. The noise of the metropolis is totally silenced, and even the city's skyscrapers can't be seen through the incredible tapestry of old-growth trees. When you consider the value of the land that it occupies, Central Park is really a miracle, a gift bestowed on the city's dwellers by people with incredible insight, who about 160 years ago placed a magnificent jewel right in the center of Manhattan Island. (Click photo for larger image)

About a week and a half ago, on a nice sunny day, I headed out determined not to be distracted in my quest to finally visit the Harlem Meer (meer is a Dutch word for lake) and Conservatory Gardens. Sticking to the park's major thoroughfares, I made it to my destination in about 25 minutes, keeping the chair at maximum speed throughout. For whatever reason, I get a little devious thrill whizzing past struggling joggers, barely suppressing the urge to scream out, "eat my dust!" as I leave each one in my tracks. I guess it's just another way of wanting to raise a huge middle finger to Multiple Sclerosis, as convoluted as the thinking behind that urge may be.

My first stop was the Conservatory Gardens, which are laid out in three distinct styles, with gardens in the French, Italian, and English traditions. Each section has its own charms and some very photogenic statues and fountains. I'm not generally a "flower picture" guy, but even I succumbed to the siren call of the floral residents within.

I then made my way to the Harlem Meer, which is the second-largest body of water in the park, all of which are man-made. The Meer is just as pretty as I expected it to be, and I'll definitely be making many return visits. I even got to see some old-school breakdancing, a photo of which is below.

The trip from my apartment to the Gardens and Meer and back totaled about 9.5 miles, including all the meandering I did when I got a bit lost trying to find a wheelchair accessible route back home. Lots of the paths in the park include extremely bothersome steps, as I guess the planners didn't give much thought to future power wheelchair users when they laid out the park in the 1850s. At the end of the day, I still had 37% of my battery power left, which pleased me to no end, as keeping track of my battery usage has become something of an obsession. I think (I hope) other wheelchair users can relate...

Here is some of the photographic evidence of my visit to the North East reaches of Central Park. Please click on the thumbnails below to see larger images.

Remembering Stella (Repost)

(Some good news and some bad news. First, the bad news. After trying a new drug (for me) to calm my mysterious  beast, I am instead caught in the throes of a struggle with it. Weaning off the drug now, so hopefully I'll be back to my "old normal" sooner rather than later. The good news is that all this should make for a pretty interesting blog post, including some outrageous pharmaceutical company shenanigans, the mysteries of my illness, and general adventures in medicine.. In the meantime, for your hopeful enjoyment, I'm reposting the below essay, written in January, 2010 about one of the best friends I've ever had. Thanks for reading, and a new essay will hopefully be up soon…

My best buddy Stella passed away just a little over three years ago. She was a faithful friend with a huge heart who always new just how to make me smile and often had me laughing riotously out loud. Stella was compassionate and sweet, and knew exactly how to live in the moment and seize every day. She was faithful, devoted and I knew that I could trust her entirely with my deepest darkest secrets. About the worst thing I can say about her is that she had the unshakable habit of loudly and vigorously chewing her paws in the middle of the night, while emitting strange noises that were impossible to sleep through.

Stella was, of course, my furry best friend, a yellow Labrador Retriever who came into my life in 1998, while I was still living in Fort Lauderdale. A coworker had just given birth to a baby girl and no longer had the time to care for Stella. I'd recently moved into a charming little 1940s Florida cottage with my then girlfriend, and was jonesing for a dog. So, the timing was perfect, and after two "meet and greets", during which Stella gave me the thumbs up, I was a happy new doggy daddy. Stella had just turned three years old when she came to me, and I was five years away from developing MS.

I hadn't had my own dog since I was a kid, but I had bonded with the canine companions of several friends and lovers that I'd met along the journey of my adult life. I was particularly close with a Dalmatian named Briar, whose owner unfortunately turned out to be a pathologically lying serial cheater who delighted in using my heart like a roll of Charmin. Quick life lesson: if you find out that your lover has cheated on every person they've ever been with, don't fool yourself into thinking you can somehow change them. Simply open your eyes to the truth, realize that once a person accepts such behaviors in themselves they will never change, and get as far away as possible, even if they have an adorable spotted four-legged creature with the most haunting eyes you've ever seen...

But, I digress. Stella and I quickly bonded, even as my girlfriend and I quickly unbonded. Turned out my Labrador friend enjoyed spending Sundays sprawled on the couch watching NFL games as much as I did, as long she could watch them while laying between my legs with her head nestled on my belly. We took long walks around the neighborhood together, although she wasn't much for jogging. The one time I took her out for a run, she made it about a block before squatting in the middle of the road and doing what dogs generally do when they squat. After completing that most natural of acts, Stella let me know that jogging just wasn't her thing. No harm, really, because jogging wasn't really my thing, either.

About six months after Stella joined me, the girlfriend and I decided to call it quits, and I decided to get the hell out of Florida, a place I never much cared for, even though I spent 10 years there. I think the tropical sun beating on your noggin causes some kind of dementia, because even though I felt like a stranger in a strange land the entire time I lived down there, for some reason I could never formulate actionable plans to leave. It was like, "gee, this place royally sucks, ooh, I think I'll go for a swim..."

Anyway, Stella and I were soon back in my hometown of New York City, living in a section of the city known affectionately as "Hells Kitchen". For a dog that was born and raised in Florida, Stella took to city life like a socialite. For some reason, she naturally curbed herself (if only the same could be said for socialites), and she loved the wonderful sniffing opportunities that the city streets offered up in droves. She also loved the take-out Chinese joint around the corner from our apartment, which always had partially eaten chicken wings discarded on the sidewalk in front of it. One of the few arguments Stella and I ever had were over her insistence on insanely gobbling down as many of those gnawed on chicken bones as quickly as she possibly could, but a few rounds of very stern "bad girls" helped her kick the habit. You see, she really was a "good girl", and my disapproval trumped the irresistible gristly remains of chicken wings, true testament of her feelings for me.

For about a year, Stella and I were strictly a duo, spending lots of time at neighborhood dog runs and in Central Park, where she'd occasionally take an ecstatic jump in the lake. She absolutely lost her mind during that winter's first snowfall, which was the first snow the native Floridian had ever seen. If pure joy could be embodied in flesh and blood, it would be Stella burying herself in mounds of freshly fallen snow and then wriggling on her back to make canine snow angels. Her glee was infectious, and soon I too was a snow-covered whirling dervish, joining Stella in her carefree frolicking, covered head to toe in the powdery white stuff blanketing the fields of Central Park.

After about a year back in the city, late one night in a neighborhood bar I met a girl named Karen, who, despite my best efforts, didn't seem very interested until I mentioned the fact that I had to get home to walk my Labrador Retriever. Turned out that Karen had grown up with Labradors, and, figuring that a single guy with a Labrador couldn't be all that bad, she gave me her number. Just about two years later, we were married. At first, Stella didn't exactly welcome Karen with open paws; after all, Karen had supplanted her place on the couch. But the two soon became buddies, and Karen even succeeded in getting Stella to lose a little weight (for a while, we referred to her as "Jabba the Pup"), much to the veterinarians delight.

For a year, everything was hunky dory, until one very cold day in March 2003, when I took Stella for a very long walk along the Hudson River. About 2 miles into our trek, I noticed that I'd started limping. I didn't think much of it, but in the following weeks, the limp in my right leg grew worse, and I felt my right arm starting to weaken. Several doctors visits and an MRI later, and I found myself sitting in a doctor's office listening to words like "multiple sclerosis" and "progression" and "spinal tap" somehow become associated with the words "me" and "holy shit".

Strangely enough, just about the same time, Stella also started having all kinds of health problems. I honestly believe that she was so empathic that she somehow shared my distress and manifested physical illnesses of her own. Between 2003 and 2006, Stella developed mast cell cancer and autoimmune hepatitis. She had multiple surgeries to get rid of the cancer, and was put on a variety of medications and a special diet to address the hepatitis. For a while, we were actually both on the same immunosuppressants, bought from the same pharmacist. On several occasions, it appeared that Stella was on death's door, but she always managed to somehow pull through, often to the veterinarian's surprise. He'd smile, shrug his shoulders, and offer the only explanation he could, "She's Stella..."

Through it all, Stella stayed Stella. Though she would suffer a while from her painful surgeries, and the hepatitis would sometimes rob her of strength and appetite, as soon as she felt a little bit better, her tail was wagging, her eyes were bright, and she was ready to embrace whatever joy that the day had to offer. In so many ways, she taught me how to deal with my own illness, which progressed continuously through the ensuing years.

Stella didn't waste any time bemoaning her fate, or thinking about what might have been, because she was blessed to simply not have the capacity to do so. As my condition has continued to worsen, I've often thought of Stella, and have realized just how right she had it. Feeling sorry for yourself or worrying about future calamity only serve to poison the present, and the present, the now, and our place in it, is the only thing in the entire universe that we have any real control over. Endeavor to live your life like a Labrador, attack each day like it's a great big rawhide bone sent from the heavens.

Eventually, Stella's illnesses and advancing years got the upper hand; the cancer returned, and my sweet little girl started slipping away. Over the Thanksgiving weekend of 2006 we boarded her at the veterinarians while we visited my mom in Florida, and when we returned the vet told us that Stella's condition had worsened, and he recommended we put her down. He brought her out to us with an IV already inserted into her leg, but upon seeing us I could see that familiar spark in her eye, and she started eating the treats I tried to hand feed her. We decided to bring Stella home, to give her the chance to make one more rally.

By this time I was no longer able to walk Stella, and most of her caregiving fell to Karen. Stella actually did rebound a bit for the first few weeks, but I guess the power of love can only go so far. A few days after Christmas, we brought Stella back to the vet one last time, held her, and said goodbye. Those weeks between Thanksgiving and Christmas became one extra month of bonus life for Stella, during which Karen took Stella to Central Park almost every day, and Stella ate all of the chicken and turkey she wanted.

Stella saw me through many transitions; from Fort Lauderdale to New York, from single to married, from well to Multiple Sclerosis. Aside from my wife, there is no being I have ever felt closer to, or more intimate with. I miss her still, and will for the rest of my days. Karen and I now live in a building that is wheelchair friendly, but doesn't allow dogs. If I somehow beat this thing, first thing we're doing is moving out of this place and getting ourselves a great big pooch, who will take Stella’s space, but surely not her place.

Here's my favorite photo of my pal Stella...

New Video! Sunday in the Park with a Kamikaze...

Hey, folks, here's my latest Wheelchair Kamikaze video. It's a kamikaze's eye view of an afternoon in Central Park, one of the best places in the world. I hope everybody has as much fun watching it as I had making it...