Man On The Wire

Of late I find myself in uncharted waters, my creeping paralysis taking me to places in mind and body that I could never have imagined I’d visit. It’s simply getting harder and harder to do everything, and as a result my contacts with the world outside of my apartment grow fewer and farther between. As my disabilities progress and my abilities regress, the familiar patterns and rhythms of everyday life fall further and further away, my healthy days now so for behind me that the memories of them often seem false, the stuff of imagination. Strangely enough, even as my old reality seems to vanish into the ether, certain incidents and instances do suddenly pop into mind with crystal clarity, richly detailed and full of life, decades old events recalled as if I’d lived them only yesterday. This juxtaposition of the old and the new, cast in such stark relief, reveals just how obsolete the rules that governed my old life have become in the context of my new reality.

As my existence has shifted more and more from the physical to the mental, certain truths about myself and my fellow inhabitants of this planet have become clear. Almost from birth we are taught the constructs and customs of the societies in which we live. Now more than ever the mass media plays a tremendous role in shaping our ideals and expectations, and in defining the parameters of social interaction. Along with reading, writing, and arithmetic our 12+ years of formal schooling provide us with a variety of  behavioral templates for daily life. In combination, these ever-immersive entities imprint within us a library of scripts that cover almost every situation we might encounter, almost every part life might call on us to play.

We are taught that our destinies are largely a function of free will; in reality, though, most people live lives that fit neatly within the confines of predefined boundaries, which fall into a daily routine permeated with sameness. We each flesh out our roles with our own particular quirks and peculiarities, but rare is the person who shatters the restraints and expectations of social norms. Some of the people that do so with audacity become rich and famous as a result, but many others who can't or won't comply struggle through life on the fringes of society. Woody Allen famously said that 80% of success is just showing up; this is largely true due to the fact that most human beings can fake it till they make it, falling back on sets of learned behaviors until they can grow into the roles they are expected to play.

Our DNA provides us with the basic programming that defines our individuality – our operating system, if you will – but the process of socialization we undergo as we mature applies layers of scripts and apps that inform the way we function in a diverse array of situations. Just as lines of code allow our computers or cell phones to become spreadsheets or image editors, the scripts and apps we learn through  years of schooling and constant exposure to mass media allow us to navigate life playing a variety of parts, some much more suited to our basic needs and wants than others.

Looking back on my own life I can clearly discern when certain sets of scripted behaviors kicked into gear. In my childhood I was a dreamer, very intuitive, sensitive and emotional, at times to the point of being overwhelmed during what in retrospect was very disjointed upbringing. As an older teenager and young adult in New York and Boston I fancied myself a creative rebel, eagerly immersed in a punk rock subculture filled with other nonconformists who somehow looked almost precisely the same as me. I felt comfortable within the confines of this group dynamic, it’s brand of nonconformity easy for me to adopt, and the lifestyle it afforded fit my natural tendencies towards a nocturnal existence and a general aversion to all things 9-to-5. Though many of the aspects of this role meshed well with my core predispositions, I still never found any long-lasting satisfaction in this guise, my high strung nature always finding reasons to be unhappy.

As I grew older, a series of unpredictable events found me living in a place (South Florida) and assuming roles (corporate cog) that ran absolutely counter to any path I had previously envisioned for myself, and in fact had sworn I would never travel. Still, for a time I survived and sometimes even thrived, falling back on a library of skill sets and behaviors I’d assimilated despite myself. Regardless of the pretzel like contortions required of my natural predilections to adapt to such circumstances, adapt I did, to a degree that I sometimes still find implausible. Over time, and to varying degrees, I was aware that I was living the life of an imposter, and I attribute the perpetual stress of living such a life as being at least partially responsible for my eventually falling ill. Engaging learned scripts can allow one to exist in uncomfortable circumstances, but there is a gaping divide between existing and living.

After far too long I wised up and hightailed it back to New York, whose familiar embrace felt as comfortable as slipping into a favorite old pair of jeans, and skill sets much more familiar than those used in Florida were easily reengaged. For several years I flourished, finding a high profile job in a "glamour" industry and marrying a woman too wonderful for words, until one day during a miles long stroll through the city with my furry best friend Stella I suddenly noticed I was limping. A few months later I was diagnosed with multiple sclerosis, likely the progressive kind, and my existence shot off on another unexpected tangent. About three and half years after I was diagnosed I was forced at age 43 to “retire”, and a year and a half after that a wheelchair became a permanent part of my life.

For many people, leaving work and going on disability can lead to an existential crisis, their divorce from the workforce shattering their very sense of self. This is especially true of folks in the professions, many of whose identities are tied closely to their life’s work. I had no such problem, as even though I attained a respectable amount of success in a highly competitive field, I never fully identified with what I did for a living. I liked saying I was the Director of DVD Production for a huge multinational entertainment company much more than I enjoyed the day to day routine of doing the job. In fact, after a short period of adjustment, I found retirement exhilaratingly liberating, particularly so after I got the wheelchair (which I most assuredly did NOT welcome with open arms) and could scoot around the city and explore all of the nooks and crannies of Central Park to my heart’s content.

I found that even though my circumstances were unfortunate, I no longer needed to fire up any script or program other than those which suited my core desires, many of which had been subjugated for years by the expectations and responsibilities of adulthood. With a camera attached to my wheelchair I started shooting photos and videos, expressing creative impulses that dated way back to my childhood. And then this blog was born, and people I didn’t even know started responding to the words I put to the page. I even discovered a hidden talent for understanding complex medical gobbledygook and translating it into understandable English. In a bizarre turn of fate the fact of my getting sick and its subsequent consequences wound up fulfilling many of the dreams I’d had as a youngster. Yes, certainly a case of be careful what you wish for, but any dream realized, no matter the price, is a precious and wonderful thing.

Now, though, as the disease continues to chop away at my abilities, slowly turning my appendages into useless clumps of tissue – at times robbing me of the dexterity to manipulate a fork much less a camera – and my illness steals from me of the energy to do much of anything at all, I find that I have no script to fall back on. The combined forces of the mass media and years of schooling somehow left out any instructions on how to deal with a decade and a half of creeping paralysis, with its encroaching decrepitude that strips away every sense of normalcy, batters the body and soul with an ever-mounting pile of indignities, and leaves one forced to watch themselves slowly wither away. What cues am I to take, what lines am I to speak, what thoughts am I to think?

So now I enter a realm of improvisation, an ad-libbed world to be negotiated with no map, no signposts, no headlights to help navigate the blind curves ahead, with only my wits and whatever wisdom I’ve accrued to help me feel my way forward. Friends and loved ones are of tremendous comfort, keeping me tethered to the world of the healthy, and my fellow members of this club that no one would ever wish to join can empathize with my tribulations, but this is a journey that ultimately leaves one traveling solo. I suppose the bigger truth is that everyone, sick and healthy alike, ultimately winds up alone. I’ve never heard of a casket built for two.

Not that I am abandoning hope, as for reasons I can’t quite figure this illness has yet to pry optimism from my grip, and I’ve certainly no plans to go quietly into the night, though I’ve also no plans to allow this disease to turn me into a brain trapped within a useless prison of flesh and bone. No, I’ll continue to castigate the powers that be who seem ever more inclined to put profit before patients, I’ll put a spotlight on reasons for hope, and I’ll comment on the human condition from the peculiar vantage point afforded by a life lived in the company of heinous, unrelenting illness. I’ll do so, though, feeling like a man on a wire with no net beneath him, winds gusting furiously beyond anything his training and experience has prepared him to defy. With no script to follow, no application to engage, I suppose there’s nothing left to do than to just make it up as I go along, and to understand that if I fall from the wire, the very act of falling itself may be filled with its own kind of wonder.

Given that setting, there may yet be interesting times ahead.

Persistence of Hope, Persistence and Hope

We must free ourselves of the hope that the seas will ever rest. We must learn to sail in high winds.
– Aristotle Onassis

Of late I’ve been navigating choppy waters, my physical problems becoming ever more pronounced and complicated, the progression of my disease along with its attendant disabilities charging ahead relentlessly. At this stage of the game I’m fully aware that there are no easy answers forthcoming. In addition to my ever-increasing crippling neurologic deficits, my highly dysfunctional endocrine system continues to defy explanation and remedy, and – as if these previous two beasties weren’t enough – a hideously painful degenerative bone disease called avascular necrosis has shattered both of my hips and shoulders, a condition which exponentially decreases my already gutted quality of life. The kicker is that the avascular necrosis is a rare side effect from the high doses of IV steroids I was given early on in my MS career in attempts to forestall the progression of the disease, and I was probably all the more susceptible to the condition due to my then largely misunderstood endocrine problems. This tangled web of maladies seems symbiotic. Each multiplies the problems caused by the others, forming a devilish trio that has me directly in its sites.

Still, even as the body flounders my spirit soldiers on, admittedly bowed but still unbroken. Though on an intellectual level I’ve long recognized the ruinous damage that can be wrought by progressive MS, I honestly never imagined or expected that I’d reach the level of decrepitude at which I now find myself. Given my extensive laundry list of failed and failing body parts, at this point there are moments when I realize how easy it would be to simply throw in the towel. Instead, I choose to continue the fight, and even in the midst of my ongoing crises of spirit and body, I can’t help but wonder, why? What is the nature of the spark within that steadfastly refuses to be doused?

When I was a little boy I had great fun rummaging through piles of old family photos with my grandmother, visual relics haphazardly collected in a variety of well-worn boxes stored up in her bedroom closet. It seemed there was a story attached to each image, and I delighted in seeing my adult relatives as their much younger selves in long ago moments forever frozen in time. I knew most of the people in the pictures, but there were of course photos of people I had never met; people who had died, old friends who had drifted away, or folks who had otherwise been lost to time.

Among the oldest photos in this treasure trove were yellowed, cracked images of my European ancestors who hadn’t migrated to the United States at the end of the 19^th century. I remember staring at these pictures especially intently, and I vividly recall seeing one small boy with whom I bore a striking resemblance. Because of this resemblance I felt a strong bond with this mysterious person, so distant from me in time and place. As a young boy I couldn’t help but be mesmerized by this reflection of myself in a photo more than half a century old.

When I first saw these ancient photos of my ancestors I was quite young, maybe five years old, and when I asked what happened to the people in them my queries were always met with a strange silence. When I asked again just a few years later, though, I was finally told that those who had lived long enough to see the outbreak of World War II had all been murdered, victims of the Nazi Holocaust. Naturally, this news had a profound effect on me. Though I don’t think the message was ever explicitly communicated, I knew in my bones that part of these people still lived in me, their blood running through my veins. As I grew older I came to feel that my very existence somehow defied the horrors that had been visited upon them, and that my life represented a victory over those who had inflicted unthinkable evils on my long lost relatives.

I was brought up with virtually no religious training, and frankly don’t have much use for organized religion, but I do culturally identify quite strongly with my Jewish heritage. Early on I developed a keen interest in the Holocaust. As I learned more and more about the realities of camps like Auschwitz, Treblinka, and Sobibor, I often wondered how anybody could have survived the raging inferno of daily life in those malevolent places, the level of depravity inflicted upon those imprisoned within them beyond description by the words of any language. Some inmates survived years in those camps, month after month spent subjected to endless horror. What is it that resides within the human spirit that keeps alive the will to live, to make it through just one more day despite being trapped in a world in which wholesale torture and murder are rendered banal? The atrocities inflicted upon these people and to which they bore daily witness defy understanding in any rational sense, and yet the sheer determination to live stood strong.

When I first started my career in TV and video production I was living in South Florida, then home to more Holocaust survivors than any place other than Israel. In one of those odd coincidences that mark the path of life, one of my first assignments as a Producer at a local cable company was to help document the testimony of survivors by recording their stories on videotape. My role was to man the video control room of our studio, choosing between camera angles using a device called a switcher while on our soundstage a professional interviewer led each survivor through their narrative, parts of which many of the survivors had never before spoken a word.

Though I participated in at least a dozen of these interviews, the experience was always emotionally wracking. In each instance an elderly grandmother or grandfather would arrive at the facility, by all appearances just like every other senior citizen retired to Florida, save for the numbers invariably tattooed on the forearms. Each interview started off rather routinely, the survivors telling tales of everyday life with their families in small towns or big cities located all over Europe and Russia. Soon though their stories took a dark turn, and out of the mouths of these sweet old people poured forth depraved accounts of heartbreak and cruelty that left all who heard them at first aghast and then in tears.

The experiences recounted included first hand reports of babies ripped from the arms of their mothers and killed before their eyes, friends expiring in boxcars so packed that there was no room for them to fall, and parents calming toddlers even as they were led to the gas chambers. One elegant lady lost all semblance of composure as she told of being shot and dumped into a mass grave, only to survive and crawl out from under a tangle of corpses when night fell. Many told of the heroism of the Gentiles that tried to save them, beacons of light shining through the some of the darkest hours civilization has ever known.

When asked how and why they were able to endure their ordeals from one day to the next, even in the most desperate of times when thoughts of liberation and freedom seemed folly, practically every one of the survivors answered that their primary reason for clinging to life was the burning hope that at least one person survive to bear witness to what happened, so that the millions of dead would not have died in vain and that mankind would never forget and let it happen again. Thus, the sheer act of living became one of rebellion, a blow struck for humanity against a world gone mad.

Now, to be sure, I am not comparing my own predicament to that of an inmate of Auschwitz in 1944, except for perhaps one tiny commonality. In the face of a daunting odds the embers of hope stay lit, even if only in defiance of a state of affairs that on some days seems without resolve. Despite the ravages of my illness and the improbability of my finding anything approaching a cure, something within simply refuses to accept my predicament but must instead fight and keep searching for answers. I am acutely aware that even if my neurologic disease were to suddenly relent I’d still be left with an endocrine system so broken as to be disabling in its own right, and that even if my endocrine issues were then miraculously stabilized I’d need to have my hips and shoulders replaced before I could leave my wheelchair. I’m not a rainbows and unicorns type of guy, but I am an obstinate SOB, and I’m not going down without a brawl.

Since the day of my diagnosis I resolved to face my illness in all of its stark reality. I fully understand that the odds of my being cured are next to nil, but if the medical geniuses could at the very least get me back to where I was five or six years ago when I was regularly out and about terrorizing pedestrians on the streets of New York in my speeding wheelchair, I’d be ecstatic. Even this attenuated wish is likely a stretch, but when my mood turns dark I think of that long-ago child in the pictures from my grandmother’s closet and determine to try to honor those whose blood runs through my veins. I am but a speck on the arc of time, my tribulations worthy of not even a footnote in the history of human suffering. I find this awareness of my own insignificance oddly comforting, a reminder that no person transcends the unyielding torrent of time. I long ago resolved to never let hope eclipse reason, yet despite the twisted knot of crippling ailments that may stack the odds against me, the defiant spark within still burns. Hope and reason are not mutually exclusive; in fact, each balances the other, combining to form a force capable of holding steady even in the roughest of seas.


A note to my fellow MSers: please let me emphasize that my situation is fairly unique in its complexities, a web of rare conditions that seem to feed off of each other. Thirteen years after my initial diagnosis, my doctors are still not even sure that my neurologic disease is MS. As I’ve written before on these pages, my neurologist and I have agreed that in my case PPMS stands for The Peculiar Paralysis of Marc Stecker. Don’t let the details of my situation dishearten you about the prospects of your own. Given the ever accelerating pace of MS research and the advances being made in laboratories around the world, MS patients have now more than ever very tangible reasons for hope. Current treatments have demonstrated in trial after trial that they can positively impact the disease course for many if not most patients, and emerging and experimental therapies now being tested provide the tantalizing promise of completely halting the disease and even repairing damage already done. At long last progressive MS is finally taking its turn as the focus of MS research, it's many mysteries slowly becoming untangled. Of course, for patients suffering from MS answers cannot come fast enough. Although there’s no denying MS remains a terrible beast, there are now more reasons than ever to have faith that this beast can and will be tamed.

Deconstructing Marc (Repost)

(I'm still in "hiatus mode", but lest the world forget all about me I'm reposting an oldie but a goodie, a blast from the past, a "best of". Or is it really just a moldy oldie? Guess I'll have to leave that up to you folks to decide. This essay was originally written and posted in March, 2011, long enough ago that I'd forgotten writing it. Thinking back on those days, it's amazing how much more deconstructing the disease has inflicted, stripping away even more layers of the veneer that 4+ decades of life had applied. The words below still hold true, but I must admit that although I understood on an intellectual level how much damage progressive MS could do, I never really believed that I'd reach the level of disability at which I now find myself. But, here I am, five years later, still making waves. Good on me. I hope you find value in the following vintage collection of Wheelchair Kamikaze syllables.)

Image via Wikipedia

Multiple Sclerosis is an undeniably destructive force. To various degrees, which change from patient to patient, the disease picks apart bodies, careers, and relationships, intent on scrambling the numberless pieces that make up the jigsaw puzzle that is each human being it touches. As the malady disrupts a patient's physical body, it also forces those afflicted with it to deconstruct themselves emotionally, spiritually, and philosophically as they adjust to the changes wrought by MS. But this deconstruction also forces the patient into a reconstruction, as they gradually shed the self-identifications and the societal expectations that had formally defined who they were, and replace them with a new sense of self that conforms to the ever-changing reality of living with a chronic, progressively disabling illness.

The speed with which this process occurs varies dramatically from individual to individual, as the mutable nature of MS means that no two patients experience the disease in quite the same way. Some can live with the sickness for decades and suffer relatively few setbacks. For these folks, the changes within may be as subtle as the disease itself, barely visible on a day-to-day basis, but more apparent when looked back at from year to year or decade to decade. Other patients, like myself, are hit hard by a more aggressive form of the illness, and adjusting to the physical and mental challenges it imposes requires almost daily manipulations of the mind and body. MS demands a metamorphosis not only from physically able to physically disabled, but from who we were to who we are becoming.

Every person, sick or well, goes through fundamental changes over the course of a lifetime, molded by mounting age and experience. Chronic disabling disease acts as a multiplier for this universal experience, compressing the time span and focusing the intensity of adjustment. The eight years since my diagnosis have seen me undergo changes of seismic proportion, as the landscape of my inner and outer lives have been rocked to a degree I hardly thought possible. Just as residents knowingly living in an earthquake zone are nevertheless shocked when the ground shifts and buildings tumble, people shaken by serious illness are stunned by their being hit with adversity, although we are all aware, even if in the most abstract sense, that accidents, illness, and misfortune are tripwires strung haphazardly across the road of life. Multiple Sclerosis is the kind of horror that happens to other people, we think, not to us. It's a comforting delusion.

After absorbing the initial shock of my diagnosis, for a while life proceeded on almost as if everything were normal. My internal dialogue was changing, as questions about my new disease and the impact it would have on my future were always being sifted, sometimes consciously, sometimes tucked away in the mind's recesses. Initially, my daily routine hardly changed, just as most of those aboard the Titanic, having registered the initial shudder of the ship hitting the iceberg, continued to drink their aperitifs and dance their waltzes, for a few minutes anyway. I got up every day, kissed my wife, showered and dressed, walked the dog, and went to work. There were the usual dinners out, shopping on weekends, socializing with friends. Yes, there was an injection to give myself every few days, but even that held the promise of a sustained normalcy and helped maintain the illusion of control. Soon though, the ship started taking on water; the slight limp in my right leg grew worse, and my right arm became progressively weaker. The descent had begun.

Just as my physical disabilities all too soon demanded attention (an ankle brace, a cane), my sense of self screamed out for contemplation. What had sometimes been a swagger now became a foot dragging limp, the dearly held illusion of immortality replaced by the reality that I was now physically defective and was very likely only going to become more so. I wore a brave face, proud of the fact that my performance at work didn't falter, even as my body did. My well practiced neurotic antics suddenly didn't seem so endearing, and the worries and anxieties that had once consumed me were now rendered trivial, as if a Woody Allen character were dropped into a concentration camp.

This was a new and frightening world I was abruptly required to navigate, filled with its own jargon and customs, a foreign realm of doctor’s appointments, medical procedures, and ever-increasing physical weakness, a place of changed priorities and heartfelt losses, a domain that imposed humility and was best traversed with a keen sense of the absurd. Thrust into this Twilight Zone, I was a character in search of a script, learning my lines on the fly, the psychological and philosophical square pegs that had conformed neatly into the cutouts of my former self now being forced to fit into round holes, requiring them to either be whittled into shape or simply discarded. This disease of the body was also a crisis of the soul, but through the churning turmoil I started to glimpse flickers of clarity, faint at first but soon better defined.

A key moment came when, less than four years after my diagnosis, the disease forced me to go on disability and "retire". Although this cleaving from the working world was jarring and disorienting, it didn't seem as hard for me as it does for some others I've known who've endured a medically forced retirement. Despite the fact that I had achieved a respectable level of success in a highly competitive business, I'd never felt entirely comfortable in the roles I played during my career. I always liked telling people what I did ( TV, video, and DVD production) more than I liked actually doing it, and there were long stretches of my working life during which I felt I had strayed entirely off of my path, even though I wasn't entirely sure what that path might be.

I'd always had literary and creative aspirations, and the everyday grind of life working within corporate organizations, even ones dedicated to creative endeavors, was at best an ill fit. As a youth I'd sworn that I would never get drawn into the workaday world, but like so many who make such declarations, circumstances dictated otherwise. Now, courtesy Multiple Sclerosis, I found myself free, somehow liberated in spirit by the very thing I dreaded most, the insidiously increasing physical disability that was imprisoning my body.

In a case of addition by subtraction, in being forced to let go of the old me I was able to discover the person that lurked within, the person who I might yet be, long buried under years of socialization, expectation, responsibility, and requirement. Like a chef preparing a reduction, intensifying the flavor of a liquid by boiling off its excess, I found that the forced process of peeling back the layers of the person I had become allowed me to find within a truer self, the me that had fed the simmering yearning I'd felt for most of my adult life.

Somehow, Multiple Sclerosis (or whatever I have-click here) thrust me, quite violently, onto a path I'd long given up for lost. I often wonder whether or not I would have still been stricken by MS if I'd had the guts and fortitude to find or fight my own way back onto my path. Was the disease a hammer blow delivered by a universe intent on getting me back on track? Either way, though I despise the disease and the physical toll it continues to take, I like the person I've become much more than the person I was, not so long ago.

It would be nice if the disease would relent long enough for me to fully explore and enjoy this new old road, but over that I have little governance. I can advocate for and educate myself, but the actual healing is out of my hands. The only control I do have is to take the journey moment by moment, focusing on the good contained within each passing now, and accepting the bad as a particularly unpleasant traveling companion. With each day there is night, with each peak there is valley, for every gain there must be loss. Such is the way of nature; such is the way of life…

A Stranger in Strange Lands

Way back in the summer of 1989, just about a month before my 26^th birthday, I unintentionally found myself living in South Florida. An unfortunate confluence of bad decisions on my part, ill will on the part of others, and an ample dose of plain old rotten luck landed me in an environ in which I never intended to land. Without getting into the gory details, suffice it to say that for me Florida was a refuge of last resort, a place I had visited fairly often (I’d long had family living there) but one which I’d never even considered a spot in which I might one day actually reside. In fact, if asked just a few months before if my living in Florida were even a remote possibility, I would have looked at the questioner as if they were totally insane. I knew on a very basic level that the Sunshine State and I would never make for a comfortable fit, but lo and behold, there I was, an accidental Floridian, ill-suited to the place by any number of measures.

Now, there’s nothing inherently wrong with South Florida; some people find the locale a paradise. I’m just not one of those people. Before arriving in Fort Lauderdale I had spent my young adult years living a quirky Bohemian existence, primarily in Boston but also for a short time in my native New York City. I’d never held a full-time job and had inhabited an eccentric and lively subculture of writers, artists and musicians, or at least wannabe writers, artists and musicians, that formed what sociologists refer to as an urban tribe, with its own customs, values and interests that quite often veered significantly from those of the mainstream.

In both Boston and New York such enclaves were woven into the fabric of city life and like-minded spirits abounded. Fort Lauderdale, though, held little in the way of such a community. Either by nature or nurture (or both) I was temperamentally completely at odds with the place. Whereas I’d always deeply appreciated the muted beauty of a cloudy day, Florida exalts in its status as The Sunshine State. Fort Lauderdale is renowned for its beaches; I detest the feeling of sand between my toes. If Florida is Ying, I am Yang. Despite Zen ideals, this particular combination of Ying and Yang did not produce harmony, but instead a feeling inside me of perpetual discord that eventually led to a crisis of spirit.

Despite my ongoing sense of otherness I remained in Florida for about 10 years, a fact I still have difficulty reconciling, particularly to myself. When I arrived in Florida I was pretty much out of options and had hazy plans of staying maybe 6-12 months. And then I suppose life just took over. I halfheartedly stumbled into my first ever full-time job, working as a low-level video producer for a local cable television company, a quirky enough position in which I had lots of fun but made very little money. In spite of my always feeling like a piglet among puppies I eventually managed to fashion an active social life and find friends and lovers, and though I grew extremely close to some of them, many were quite different from the folks I naturally gravitated to up North. This taught me a lesson that remains one of the few net positives that I took away from my time in Florida: to not prejudge people based on externals alone. Given half a chance, people of all stripes can be full of delightful surprises.

After a few years, my oddball job working for the cable company led to a more lucrative and much more structured position in a marketing company, and that to yet another career builder in an even more stifling corporate environment. While this evolution provided financial comfort, it also shoehorned me into a day-to-day lifestyle that only a few years earlier I had adamantly and vociferously forsworn. At times I barely recognized the clean-cut young man knotting a necktie who looked back at me in the mirror, feeling as if I were living a life deep undercover or, worse yet, as a feckless imposter. Beneath the surface my native eccentric impulses still simmered, but somewhere along the line I had allowed myself to become a passionate man living a passionless existence.

Along the road to this begrudging semi assimilation I lost track of who I once was, the essence of “me” that existed still at the core of my being. This created a spiritual and psychological void that led to terrible cognitive dissonance, manifesting as what I can only describe as a desiccation of the soul. As the years wore on I grew increasingly discontented but found myself caught in a self-imposed catch 22, shackled by the responsibilities of the very lifestyle that was causing me such massive dissatisfaction. The mental blinders I developed in a misguided attempt to stay the course served also to keep me from seeing a way out.

During my last few years in Florida I started experiencing a variety of strange physical symptoms that subsequently turned out to be a subtle presage of the physical crisis to come. Finally, after nearly a decade, the breakup of a long-term romantic relationship provided me with some long overdue escape velocity and I made my way back to New York. Despite the tropical beauty of parts of South Florida, my favorite view of the place turned out to be the one in my rearview mirror.

Arriving back in New York felt like pulling on a favorite pair of well broken-in jeans, once thought lost but happily rediscovered. Before long things started to almost magically fall into place; I reconnected with dear old friends, landed a promising high profile job in a very prestigious but funky outpost of a worldwide mega-media company, and, just a little over a year after returning to NYC, met the marvelous woman who I would eventually marry.

Things seemingly couldn’t have gone much better until – after four years back in New York and just weeks before my first wedding anniversary – the nagging physical symptoms that began back in Florida finally became too pronounced to ignore and I was soon diagnosed with progressive multiple sclerosis. Even though I’d had a sense for years that things weren’t quite right physically, nothing could have prepared me for the maelstrom that would soon erupt within and around me as I was forced into the world of creeping paralysis, once again a stranger in a very strange land, limping down a path for which no roadmap existed. My discarded crisis of spirit was now replaced by a crisis of body.

Despite the best efforts of me and my doctors my disease progressed quite rapidly. Less than four years after my diagnosis I was forced to quit work and go on long-term disability. About a year and a half later I found myself in a wheelchair, the right side of my body withering and my left side beginning to weaken. Quite unexpectedly, these developments allowed parts of me that had been buried for decades to take root and blossom. The gaping holes in my life left by the excision of work and social obligations were soon filled by pursuits and passions that had for far too long been subjugated by the realities and responsibilities of adulthood. Further, my attempts to save my own backside by learning as much as possible about my disease and the ongoing research into treating it injected a sense of purpose and glimmer of light into this murky and frightening new world.

Not to say that my getting sick was in any way fortuitous or – gack! – a blessing. But my increasing disabilities served to strip my life bare as I became less and less able to utilize the trappings of the land of the healthy, rendering an ever-increasing list of everyday objects little or no use to me, luxuries and perceived necessities that had served not too long ago as balms providing superficial comfort and satisfaction, particularly during my wayward days lurching through life in South Florida.

Slowly a curtain of artifice began to lift, and looking at the healthy world from the outside in revealed the synthetic nature of the forces driving most people’s lives; the unappeasable wants and desires conjured by insatiable consumerism, the intentional discontent fostered by a social order that thrives on keeping its populace in a perpetual state of simmering dissatisfaction. During my Florida days these machinations led me down a primrose path, but in my increasingly compromised physical state I began to see with startling clarity that the frenzied world of imposed needs and longings that I once inhabited depends on no thing – no object, person, or sense of self – ever being good enough. No wonder antidepressants are being gobbled by the ton.

Paradoxically, the crisis of body that came all too soon on the heels of my Floridian crisis of spirit allowed that spirit to take root and blossom, freed by unfortunate circumstance to flourish in the absence of any preconceived notions of success and failure. Perhaps the most maddening aspect of this creeping paralysis is that it very likely will never allow me to fully utilize the lessons learned, to put into action in that ever receding land of the healthy the bits of wisdom and insight garnered by being forced to endure what I once believed to be unendurable. Has the experience of prolonged debilitating illness left me unsuited for a life back among the healthy? Now there’s a problem I wouldn’t mind facing, to once again be a stranger in that strange land.

As for the world I now occupy, this truly bizarre land of multiple sclerosis, I intend to always be a stranger within. Although so many of my fellow inhabitants are among the most inspiring people I’ve ever come to know, I will not – I cannot – accept citizenship in this nation. If I was haphazardly thrust out of my element by my never intended move to Florida, I’m a willful alien in this place. No MS green card for me, thank you.

And so I find myself a stranger in two strange lands, the worlds of the sick and the healthy. Maybe it was my destiny to always be the stranger, or perhaps I’m just strange. In either case, vive la diffèrence!

Well, just as long as I don’t have to vive it in Florida…

My Body, My Self

In Mel Brooks’ 1981 comedy “The History of the World, Part 1”, a scene set during the French Revolution features a member of the aristocracy rushing to tell King Louis XVI, “It is said that the people are revolting!” His Majesty quickly replies, “You said it, they stink on ice”. 

The exchange is an amusing play on words that succinctly and humorously sums up the crux of the social upheaval engulfing France at the end of the 18^th century. Substitute me for the King of France and the words “your body” for “the people”, and you’ll get a pretty good idea of what’s going on inside me, both physically and mentally, courtesy my creeping paralysis. My body is in full revolt, increasingly refusing to obey my commands, and I find the situation along with my withering body itself completely repellent. My body is revolting, and it stinks on ice (not literally, I hope, for the sake of those who get close enough to smell me).

The mind-body connection is a strong one, but progressive multiple sclerosis can be a buzz saw intent on breaking that bond. As the disease advances it forces one to separate body from mind, as the “self” becomes more and more divorced from the body that serves as its vessel. Despite lofty ideals about looking beyond the physical to the person within, our sense of self can’t help but be intricately entwined with our physical state; our identities, for better or worse, are in so many ways shaped by our outward appearance, a dynamic that seems ever on the increase in a culture obsessed with beauty.

We live in a society that idolizes physical beauty to the point of absurdity, elevating the utterly talentless but extraordinarily beautiful to fame and fortune and fueling in many an obsession with physical perfection. This incessant quest for beauty has in turn birthed entire industries devoted to indulging this ravenous appetite for youthful good looks which only further feed our insatiable societal lust for flawless appearance. Billions of dollars are made catering to a population infatuated by comeliness, with cosmetics, fad diets, exercise crazes, and plastic surgery all exploding to the sound of cash registers ringing and money changing hands.

Though we pay lip service to the idea that beauty is only skin deep, study after study has shown that in modern Western society those perceived as physically attractive have a quantifiable advantage over those not similarly blessed. There are, of course, exceptions to the rule, and beauty is by no means a sure ticket to happiness. Indeed, for some it can become a curse – think Marilyn Monroe – but our popular culture covertly and overtly continuously pounds home the message that the spoils of life most often go to those deemed gloriously pretty or handsome. I’m not sure that anyone can be immune to this pervasive zeitgeist, and I certainly was no exception back in my healthy days, although my relationship with my body even pre-MS had a long history of discord.

Growing up I was as skinny as they come. I’m not talking merely thin, I’m talking Boney Maroney, stick figure, almost comically scrawny. In addition to earning the nickname “Bones”, until I was 15 or so I was also quite short, and as a skinny little pipsqueak I was often subject to teasing not only by other kids but sometimes by adults as well. While it’s considered bad manners in grown-up circles to talk about a heavy person’s weight, it seems no such taboo exists when it comes to the extremely thin, regardless of their age. Being teased by other kids was bad enough, but in response I quickly developed a smart and scathing wit with which to defend myself from their juvenile barbs. Hurtful comments made by adults, though, always struck home hard, and I can still vividly remember some of the most boorish comments directed my way by adults who should have known better, the combined effects of which spawned massive insecurities that persist to this day.

A sudden growth spurt when I was about 15 years old took care of the pipsqueak part of my problem, but I remained superduper skinny for years to come. When I graduated college I was 6 feet tall and weighed in at a whopping 120 pounds soaking wet. Fortunately, sitting atop that emaciated frame was a face that was kind of cute, and much to my delight and amazement I discovered that there were women who actually like skinny men. I naturally gravitated towards artsy social circles and wound up the lead singer of a punk rock band, a role in which thin was most definitely in. In the underground music scene in the 1980s there was more than a touch of heroin addict chic, and I had the decided advantage of being as thin as a junkie without actually having to take drugs. I’d managed to find a social scene in which my being the skinniest guy around was actually an advantage. Go figure.

My body finally filled out in my late 20s, but I always remained on the thin side. Nobody was ever going to mistake me for Adonis. Although I was considered attractive, and was sometimes even called handsome, the insecurities that first took root when I was a skinny little nebbish lived on and I fought hard to overcome a shyness that at times bordered on social anxiety. I’ve been told that some found me aloof or even standoffish, but in reality I more often than not was quaking in my boots. That scrawny little 10-year-old was never far from the surface, a mind-body connection that persisted far into adulthood even though it no longer reflected my physical reality.

Now an entirely different kind of mind-body connection, or, more correctly, a mind-body disconnection plagues me. Just around the time that I had become comfortable in my own skin – thank you, decades of psychotherapy – a little problem called multiple sclerosis reared its ugly head. While walking my pooch along the Hudson 11 ½ years ago, I developed a slight limp in my right leg. All too soon that limp was joined by a weakening right arm, and whatever dastardly bastard was causing this distress refused to release its grip. Fast forward a decade plus and this beastly disease has just about fully consumed my right side and is gluttonously munching away at my left. My mind reels in horror at the damage that has already been done and can barely stand to contemplate that which may lie just beyond the horizon. But the me that existed before my illness struck still resides within, inevitably changed by the experience but ever yet struggling to maintain itself.

In a situation surreal but all too real, I find myself (and my self) trapped in a body that increasingly not only refuses to obey my wishes but seems to have a mind of its own. I sometimes put my disease to the test, concentrating intently, face contorted with effort, commanding my right ankle to flex, but much to my overwhelming chagrin and frustration, nothing ever happens. Absolutely nothing. Many nights, though, just about the time when I’m ready to go to sleep, my entire right leg will shudder and quake in muscle spasms beyond my control, violent enough to shake the bed frame, the tremors coming in waves every 30 seconds or so for hours on end despite the pharmaceutical cocktail meant to quell them. All the while, inside, buried deep within the emotional maelstrom brought on by my illness, lays a big kernel of the old me, observing it all in utter disbelief.

Since the onset of my disease, the divide between my essence and the body that contains it has grown from a slight fissure into a great chasm. I’ll occasionally struggle from my wheelchair to stand in front of a mirror, trying to strike a pose that suggests some semblance of normalcy, imagining that if someone were to glimpse me at that precise moment they might not guess I was so afflicted. But then I see in my reflection that my right arm has withered, the fingers on my emaciated right hand curl unnaturally inward, and my right wrist and elbow stay unbent only by my precariously lodging them against the side of my body. In shorts my legs reveal themselves to be sticks, as if they remembered who they were back in my skinny youth and decided to reprise the role. My once lean stomach has become a bulbous belly, courtesy years of sitting in a wheelchair. This is not the me that I hold in my mind’s eye, and yet this is the reality of the body I now possess, a body that will become only more and more unfamiliar with time barring some incredible medical intervention.

This decrepit circumstance has forced me to break the mind-body connection that we are so conditioned to accept as reality. Though I struggled to embrace my physical self in my younger days, I must reject the physical decay that now besets me, as for sure this defective mass of flesh and bone does not define me. My mind remains sharp, maybe too sharp, and my sense of self is more pronounced now than ever, albeit in an increasingly disembodied state. I don’t know if consciousness survives our ultimate physical demise, but I do know that the essence of who I am is increasingly independent of the physical form that maintains it.

In a strange paradox, I have become more sure of the person I am these days than I ever was back when my body was whole. I’m privy to insights I likely never would have attained if not for my unfortunate situation. It’s a strange life, this existence within an existence, but it is life nonetheless, not one I ever would have chosen but one in which holds within it not only sorrow and frustration but also still moments of contentment and sometimes even joy. Along with my sense of self those two most vital elements of life, joy and contentment, have by necessity undergone their own bits of revision, reshaped and reimagined by a me that more and more severs the connection between body and mind.

My body is revolting, and yes, you said it, it stinks on ice… Ha!

The Problem with Progression, Revisited

English: Cropped version of :Image:Domino effect.jpg (Photo credit: Wikipedia)

The good folks who administer the website MultipleSclerosis.net (click here) and I have reached an agreement to publish 20 essays from the Wheelchair Kamikaze archives on their site. MS.net is a wonderful resource for MS patients and those who love them, filled with the latest MS news as well as insightful articles and essays by folks dealing with the disease in all its forms. Lots of good stuff there, all of it high-quality. Best as I can figure, the fact that they decided to include some of my essays must be due to some sort of clerical error.

The initial WK essay published on MultipleSclerosis.net is a post that first appeared on this blog in July, 2009, entitled “The Problem with Progression” (click here). Back then I’d only been writing Wheelchair Kamikaze for about six months, and had been in a wheelchair for one full year. At the risk of stating the obvious, the essay deals with the progressive nature of Multiple Sclerosis disability. In it, I state that “the problem with progressive neurologic diseases is that they progress”, a sentiment which may seem self-evident but carries quite a wallop. When I was first diagnosed I listened in a befuddled haze as the doctor talked about the need to try to minimize something he kept referring to as disease progression. I’d no idea what he was talking about, but I sure would find out in the months and years to come.

Even in those early days it was clear I had progressive neurologic disease, with few if any viable treatment options available. Since then, new disease modifying therapies and even some alternative approaches have proven to have significant positive impact on many afflicted with the relapsing remitting form of MS, but though the attention of researchers is finally shifting to progressive disease there remains precious little in the way of effective therapies for us “progressives”.

The roughly 6 years between my initial diagnosis and my writing “The Problem with Progression” had seen the disease wreak havoc with my life. I’d gone from having a slight intermittent limp to requiring first an ankle brace, then a cane, and finally an electric wheelchair. I’d been busily employed in a high profile industry but was now 2 ½ years into my forced retirement, had seen my social life diminish from flame to flicker, had witnessed my body betray me in ways I’d never thought possible. Such a tremendous amount of upheaval in such a relatively short amount of time, my body caught tight in the grip of a seemingly insatiable beast, my mind buffeted by an emotional whirlwind, my intellect left to desperately try to sort it all out.

Given the alarming rapidity of my disease progression, I wrote about the difficulty of processing the losses already visited when the prospect of losses to come loomed ominously on the horizon. The flipside of looking back to mourn the wounds already inflicted is looking forward and anticipating the insults yet wrought, leaving little room in which to find some measure of solace.

The opening paragraph of “The Problem with Progression” talks about the realization that I’d very likely soon need to use my wheelchair inside my apartment, when at the time the mechanical monster had been used exclusively out-of-doors. Well, that little prediction did indeed soon come to pass, and now the notion of my walking from the bedroom to the living room seems about as likely as my being elected Pope (quite the long shot for a Jewish guy from Queens).

Later in the essay I talked about how annual events had become markers of my disease progression, times when I could look back one year and assess the damage done over the previous 12 months. I used the example of the Super Bowl, wondering if and when I’d no longer be able to watch it from the comfort of my living room couch, or even be able to manipulate the TV remote. It’s now been at least four Super Bowls since I’ve watched the NFL championship game – or anything else, for that matter – from that couch. Instead, all of my TV viewing these last few years has been done from the vantage point of my wheelchair, which is at once both a constant reminder of my imprisonment by the demented captor that is MS, and the key that keeps me from being completely swallowed up by the dungeon of disease.

The six years that preceded my writing “The Problem with Progression” witnessed MS completely reshape my existence in dramatic fashion. The five years since, though, have seen the changes become much more incremental, but in some ways perhaps even more insidious. The psychological hurdles presented by being forced by the disease to totally change almost every aspect of my day-to-day existence in the half-dozen years following my initial diagnosis were big-ticket items, readily identifiable monoliths with which to emotionally grapple.

Now, although the disease continues to progress largely unabated, the changes are more discrete, much less apparent to anyone but me and my closest observers – increasingly clumsy fine motor skills in my one still usable hand, a sometimes crushing fatigue, muscle spasms that pound away in the dead of night. Most of the blatantly obvious milestones have already been reached, but each passing year finds me still weaker and less able. Creative adaptations allow for a semblance of equilibrium in quality of life, but at some point, barring some much hoped for intervention, the mounting deficits will defy adaptation. The difference between the earlier, more obvious stages of my disease progression and that of these later years is kind of like being dragged under water. Once your head goes under the surface, all anybody looking from above sees is that you’ve submerged. The only one who can feel the increasing pressure and mounting darkness of being dragged deeper and deeper into the murky depths is you, the marvels of fresh air and sunlight drifting off as if they were only half remembered fragments of a long-ago dream.

It’s testament to the power of the human spirit that life beneath the waves still holds elements of wonder, sparks that continue to shine brightly once the effort is made to clear away the shade. Though the disease progresses so too does the desire to defy it, to stake a claim in a world turned upside down. I may not get out and about as much as I used to, even in the wheelchair, and the rigors and stresses of the disease – both physical and mental – may dictate submission to constraints I long to throw off, but I’m still here, dammit, occasionally licking my wounds but nowhere near willing to raise the white flag. Dragged under the sea of disability I seem to have managed to grow gills, and though I acknowledge and accept that there are depths below which there can be no survival I maintain hope that somehow, someway, I’ll break the grip of MS and once again bob to the surface. In the meantime I’ll simply do the best I can, even if this year’s best pales in comparison to that of only a few years ago. The problem with progression may indeed prove to be unsolvable, but it won’t be for lack of trying.

Anger Mismanagement

(Please note, if you receive Wheelchair Kamikaze via email, the following essay contains a video clip which can only be viewed on the WK website (click here). Unfortunately, video clips cannot be embedded in the email version of these essays.)

My wife attends a monthly caregiver support group, though I can’t imagine why, since I’m such a prince and always a tremendous pleasure to be around. Be that as it may, Karen tells me that many of the other caregivers in the group talk about the tremendous amount of anger expressed by their MS stricken partners, something that came as a surprise to her, since I’m generally not a very angry person. I’ve always been slow to anger, but if anything could get me angry, having to deal with MS and all of attendant crap that comes along with it should do the trick. So, this got me thinking, am I really not angry in the face of this flying shit storm, or is my anger manifesting as something else?

After literally decades of psychotherapy (my enshrinement in the psychotherapy patient Hall of Fame is a cinch), I’ve attained a fair bit of self-knowledge and awareness, and I know that I’m not comfortable expressing or even acknowledging anger. Though I can at times be a sarcastic son of a bitch (and what is sarcasm but anger buffered by humor), I’ve always been harder on myself than anybody else. Not that I’ve ever been some milquetoast wimp who wouldn’t stand up for himself, but I’ve rarely done so loudly, with nostrils flaring, even when I probably should have – though I must admit I have had my moments. In my personal and professional life I’ve encountered my share of jackass bullies who are the black to my white, screaming, shouting, and belittling their way through existence, but I’ve always filed these folks away in a mental folder marked “asshole”, and chosen, as much as possible, to simply ignore them. I clearly have a distaste for outward displays of anger in both myself and others, and I wonder if this aversion has led me to avoid anger to the point where I sometimes no longer recognize the emotion in myself, even when it might be the most appropriate response.

Certainly, being hit with a chronically creeping paralysis that forces you to watch yourself disappear by inches is plenty of reason to get a mightily ticked off, even if there isn’t anybody or anything on which to focus such wrath other than the universe at large. I mean, WTF, there are serial rapists, pedophiles, and mass murderers walking around healthy as horses, and I get stuck with this crap? I’m fully aware that we’ve all done things that would make our mothers blanch to have borne us, but there is plenty of human detritus out there much more deserving of paralysis, spasticity, and all of the other pleasures of this freaking disease than I.

Luck of the draw I tell myself, you simply got dealt a bad hand, but sometimes it’s pretty damned hard not to feel singled out, to feel like the universe ate some bad Mexican food and then decided to cop a squat, take aim, and let rip a big sloppy dump right on top of you. For whatever reason, almost every MSer I personally know seems to be a pretty good egg, as if the multiple sclerosis bug only bites the butts of nice people. Who knows, maybe some of my new friends were flaming assholes before getting struck with MS, and the disease itself is so traumatizing and humbling that it can take the edge off of even the biggest fucktard. I’m pretty good judge of character, though, and when it comes to personalities I’ve learned that it’s awfully hard to polish a turd.

Hey, wait a minute, what’s this I’m starting to feel? By gosh, could it be… ANGER?! Well, why the fuck not, it’s my blog and I’ll rant if I want to, and I invite anybody reading this to rant along with me…

Not only am I sick, but I’m sick of being sick. I’m sick of dragging around a useless right side as if it were a carcass, even while my left side continues to weaken. I’m sick of relying on the kindness of others to cut my food, zipper my jacket, and button my pants. I’m sick of the prospect of taking a shower being as ominous as the prospect of taking a trip to the gallows. I'm sick of the fucking wheelchair. I’m sick of only being able to sleep in two-hour spurts because whatever position I’m finally able to fall asleep in invariably becomes so uncomfortable that it interrupts my dreams. I’m sick of muscle spasms that make my limbs shudder and shake as if possessed by demons. I’m sick of always being so goddamned fatigued that calling what I feel “fatigue” is like calling the Queen Mary a dinghy. I’m sick of the meds and I’m sick of the lack of meds. I’m sick of having to be brave, I’m sick of always seeking the peace within, and I’m sick of not having the freedom to let my mind wander, because it could very well wander into a real-life horror story too demented to be conjured up even by Edgar Allen Poe. I’m sick of watching my dwindling abilities turn into disabilities, of looking on helplessly as my world gets smaller, of watching the walls creep in. So much for my being an inspiration, I guess.

Not only is the disease itself as much fun as genital mutilation, but the universe it plunges you into isn’t exactly Candyland, either. From incompetent and uncaring healthcare professionals, to moneygrubbing pharmaceutical companies, to the unadulterated evil that is the health insurance industry, the hostile landscape a sick person must navigate is filled with enough pitfalls and landmines to make the sanest among us stark raving mad.

One might think that suffering from a chronic illness would confer some kind of cosmic Get Out Of Jail Free card, but no dice. I am extremely lucky in that I truly like my neurologist and his office staff, but some of the other doctors and their assistants that I’ve met in my long ongoing quest to get a definitive diagnosis call into question the notion that possessing a beating heart is required to sustain life. I’m quite sure some of the insurance reps I’ve engaged in verbal battle with were something other than human, instead quite likely undead ghouls straight off of the set of The Walking Dead, whose deepest desire was to somehow reach through the phone and eat my brain, or what’s left of it. And the pharmaceutical companies, well, aside from bribing doctors, falsifying research, marketing drugs and devices that they know are dangerous, and coming up with cures for absolutely nothing, they are doing a bang up job. Huzzah to them.

Before my diagnosis I was as taken in as anybody by the image of the gleaming whizbang super high-tech modern medicine machine. According to all the PR, it seemed like miracles were being performed daily. Once inside the belly of the beast, though, the picture changes dramatically. Sure, modern medicine has tamed a handful of terrible maladies, but far more have it completely befuddled, although those who populate its gleaming halls would never admit to such. When I was diagnosed 10 years ago I was told that the cure for MS would be had within 10 years, and guess what? People who are being diagnosed today are being told exactly the same thing. It’s awfully hard to cure a disease when nobody is actually looking for the cure, and the sad truth is that very little research is being done to look for the fucking cure. Why? Because MS, and many diseases like it, have become cash cows, industries unto themselves, generating billions and billions of dollars and employing thousands and thousands of people.

Due to expanding budget deficits and the notion that government can do no good, the bulk of medical research has been handed over to the pharmaceutical companies, which are almost all publicly traded for-profit entities whose primary concern, by law, is their bottom line. Curing sick people would turn them into healthy people, and healthy people don’t buy drugs. Keeping sick people alive and reliant on exorbitantly priced pharmaceuticals is the ticket to endless profits. So we’ve evolved a twisted system in which patients are seen first as consumers, flocks of geese laying golden eggs just waiting to be plucked. And fucked, but not in the good way.

I apologize, dear readers, for the dour nature of this post, which I realize has turned into a diatribe of diabolical proportions. But you know what? It feels good to let loose all the trials, tribulations, and frustrations that I know we the afflicted share and deal with on a minute to minute basis. Indeed, there is a time to every season, and a time for every purpose under heaven. I decree that right now is my time to raise up a huge middle finger to everything that has transpired these last 15 years since my first symptoms started cropping up, lost years that I will never get back even if I were to wake up miraculously cured tomorrow, which we all know simply is not going to happen. This disease smashes dreams, breaks hearts, and does its best to trample hope. But kindle hope we must, as hope is the only weapon we can effectively deploy against all of the insults described above, and without which we are truly lost. Still, it’s possible to harbor hope but be fully cognizant of the realities of the situation, realities that perhaps will only change when we the patients rise as one with a righteous fury to demand a different way of doing things.

For inspiration, I leave you with the following clip from one of my favorite movies, and I urge everyone to follow the on-screen action and turn this viewing into a participatory event. I promise, it’ll feel good, like primal scream therapy. Here’s Peter Finch, as Howard Beale, the mad prophet of the airwaves, in the 1976 movie “Network”. Mr. Finch won a posthumous Oscar for his performance in the film, and it’s frightening how little has changed in the nearly 40 years since it first hit the silver screen…



RIP Annette Funicello and the victims in Boston.

Entering the Twilight Zone

A memory arrived in the mail the other day. It wasn’t unexpected, as I had ordered the item on eBay about a week earlier. My wife helped me open the package, and as its contents emerged my eyes fell upon an object that seemed like a long-lost piece of myself, a relic long consigned to the mists of remembrance suddenly made real once again. There in my one working hand was a nearly 32-year-old copy of “The Twilight Zone” magazine, dating back to August, 1981, its cover as instantly familiar to me as the face of a rediscovered old friend.

I opened the magazine and flipped through the first few pages until I found the publication’s masthead, the long column of titles and names of the people who worked to publish each issue. Scanning the list, my heart jumped a bit as my eyes landed on a name that I knew would be there but which somehow managed to surprise me nonetheless. There it was, under the names of the Editor and Managing Editor, just as I remembered: “Editorial Assistant: Marc Stecker”. Me. Suddenly I was 17 years old again, as excited to see my name in print as I was the first time around over three decades past, back when all of life was still in front of me, and my current Twilight Zone like circumstances were beyond imagination.

I worked at The Twilight Zone magazine during the spring semester of my senior year of high school. Because I attended what is considered to be New York City’s best public high school, Stuyvesant High, the school's bulletin board listing afterschool jobs attracted more than the usual busboy and supermarket positions most kids worked at in those days to earn their weekend money. I was lucky enough to be the first to respond to a new posting looking for a proofreader to work at a publishing company uptown.

When I nervously arrived for my interview, I learned that the publication I was applying to work for was a magazine dedicated to The Twilight Zone, one of my all-time favorite TV shows. Back then, before the advent of cable television, when we had to make do with (gasp!) all of seven TV channels, The Twilight Zone was a syndicated staple of local non-network television broadcasts. I can’t speak for the rest of the country, but in New York City the show was televised seven days a week, usually with back-to-back half-hour episodes airing late at night in glorious black and white. Even before working on the magazine, I was already familiar with virtually every episode of The Twilight Zone, having viewed most of them numerous times. I was far from alone in this expertise; in those days before video games, my friends and I would sometimes while away the time recounting the diabolically clever plot lines of Twilight Zone episodes, even though we all knew most of the shows by heart.

The original Twilight Zone series was produced in the late 50s and early 60s, the brainchild of creator Rod Serling, who introduced each episode dressed in a suit with skinny lapels and tie, a cigarette usually dangling from his fingers. The show featured off kilter tales with a very human touch that almost always ended with a mindbending twist, most episodes falling into the sci-fi/fantasy realm. In The Twilight Zone nothing was quite what it seemed, and you’d better be careful what you wished for, because wishes would often come true in unexpected and sometimes – but certainly not always – unpleasant ways. The episodes were deftly produced and directed, and were written by some of the top TV and film wordsmiths of the day. Several episodes starred actors who were already well known, or who soon would be, including Robert Redford, Jack Klugman, Burgess Meredith, and Agnes Moorehead, to name a few.

Much to my surprise, after a brief interview with the magazine’s Managing Editor, I was hired on the spot. My daily tasks were devoted to assisting the very small staff of The Twilight Zone, which was primarily a two-person operation, with responsibilities split between an Editor and a Managing Editor, who were tucked away in a small office at a large publishing company. The company's primary product was a second-tier “adult” magazine (yes, the kind featuring naked ladies – a definite perk as far as this 17-year-old was concerned), with a large staff devoted to publishing it and some sister publications. The Twilight Zone magazine itself turned out to be not some cheesy fanzine, but an impressive, very literate publication, featuring not only information about The Twilight Zone and other science fiction and fantasy movies and TV shows, but also original fiction in the Twilight Zone tradition. As such, every month it featured half a dozen or so new short stories by known and unknown writers, including some very famous authors such as Stephen King and Joyce Carol Oates, stories whose typewritten pages I not only got to lay hands on but help copy edit, making sure the typeset “galleys” for publication were free from mistakes such as misspellings and misplaced punctuation. For a kid with literary ambitions, this was intoxicating stuff.

As I sat in my wheelchair leafing through the yellowed pages of the old magazine, a steady stream of long dormant memories roused from hibernation. My job at the publishing house was my first foray into the everyday world of working adults, and I remember how surprised and amused I was at the controlled chaos around me. Though older and allegedly more mature, these folks seemed as full of foibles and quirks as my teenage friends and classmates. Did anybody ever really grow up?

One of the big bosses at the publishing company was a man with a hair-trigger temper, who was plagued by physical tics that worsened the angrier he got. The editor of the magazine was a fellow named T.E.D Klein (who would later become a not very prolific but well-respected horror author), a man in his mid-30s with a sharp mind and dry wit. I vividly remember the big boss once flying into our office in a blind rage over some relatively minor transgression, screaming wildly as his tic ridden body Increasingly took on a mind of its own, his anger manifesting itself physically in the form of his uncontrollably pounding himself rhythmically in the center of his chest with his right forearm. I of course was horrified, but I could see T.E.D desperately trying to suppress his bemusement, his face weirdly puckered as he bit the inside of his lip in an attempt to not break down in uproarious laughter at the sight of the lunatic in front of him. So, this was life in the working world of adults. How strange.

Although I only worked at the magazine part-time for six months or so before going off to college, those days were brimming with teenage drama and angst, and my time at the magazine was a heady source of pride. Not only did I get to work with the hand typed manuscripts of famous authors, but I also took part in helping choose photos and illustrations for the magazine (developing the deep crush on one of the freelance illustrators in the process), met a variety of interesting people (including Carol Serling, Rod’s widow), and generally felt very much a part of the team.

Holding that old magazine, dating back to a time when I was about to embark on a defining new chapter of my own life story, I wistfully recalled that peculiar teenage mix of omnipotence and insecurity, the future rushing at me filled with prospects both exhilarating and terrifying. Life itself beckoned, and the preview reel that played in my mind featured visions of fame and fortune, romance and adventure, success and recognition, tempered liberally by fears of abject failure and disappointment. Despite occasional flashes of bravado, I was a bundle of neuroses back then, more Woody Allen than Mick Jagger, but still, my visions of a grand future seemed tantalizingly possible.

The notion that my life would be upended by a creeping paralysis certainly never entered my mind, even though I was an accomplished hypochondriac. I feared cancer, brain tumors, even leprosy, but the prospect of paralysis never really occurred to me. Now, with my disease continuing to progress, all of those teenage notions of what was to be are painfully bittersweet, the decades old magazine that sat in my lap their physical encapsulation. Viewed from certain angles, my current circumstances could be fodder for one of the stories contained within its pages, and it has often occurred to me that in some ways I could very well take my place as a character in a Twilight Zone episode.

I’m the wannabe writer who strayed from his path, his literary aspirations forever lingering as a painful reminder of dreams unfulfilled, until he contracted a dread disease and suddenly found his written ruminations reaching a worldwide audience through a medium that didn’t even exist when his dreams were first formed. I’m the lifelong neurotic and hypochondriac who spent countless hours and dollars on psychotherapy, whose inner demons were only put to rest through the realization of one of his greatest fears. I’m the disquieted seeker of wisdom always searching the arcane for glimmers of truth, only to grasp that which is truly important when forced to the sidelines of life, unable to apply the lessons learned to the existence he once led, the life interrupted.

I’ve written this before, but in this context I think it bears repeating. If a fortune teller had told the 17-year-old me that at age 49 I would live with my beautiful wife in a skyscraper next to Lincoln Center, that I’d sleep and wake to my own schedule, that my writings and photos would be read, viewed, and valued by people all around the world, and that I’d spend my days free from the constraints of having to work for a living, I’d have been ecstatic, convinced that all of my dreams would be realized. Of course, that seer would have left out one little detail, one slight wrinkle, an asterisk attached to the story that would make all the difference between dream and nightmare.

Yes, in The Twilight Zone you must be careful to read all of the fine print and consider every nuanced possibility. My life has seen me go from working at The Twilight Zone to living in my own private version of it, which in itself might make for an interesting episode. As Rod Serling might have said in an introduction to that episode, “Presented for your inspection, a man watching himself disappear, one side of his body paralyzed, and the other desperately trying to hold on. He finds himself oddly off-balance, his right leg immobile and his left firmly planted in The Twilight Zone…”

So, has this Twilight Zone life delivered it’s final twist, or might there be one more to come, a happier one in my future unwritten? One can only hope, and hope is the precious legal tender of The Twilight Zone.

Cue spooky music…



Here’s a classic old episode of The Twilight Zone, enjoy…

Changes, Inside And Out

Change (Photo credit: mbgrigby)

For many individuals, change is an unpleasant proposition. Most folks generally strive to maintain stability in their personal and professional lives. Major life changes, such as switching jobs, suffering the breakup of a romantic relationship, or moving to a new location can cause tremendous amounts of anxiety and stress, and studies have shown that some major life events, such as divorce, can have a lasting negative effect on mental and physical health. The simple fact is, though, that a certain amount of change is inevitable, and quite often changes once feared turn out, in retrospect, to have been for the better.

Once, while working for a large corporation, I attended a three day symposium that focused entirely on how to deal with change from a business point of view. Since change is inescapable, the symposium leaders told us, rather than fearing and trying to avoid it, workers and organizations are much better served by anticipating and embracing the shifting circumstances that are sure to come. Sticking rigidly to the tried-and-true will sooner or later find a business, no matter how large or successful, facing an existential crisis.

Patients dealing with progressively disabling diseases like Multiple Sclerosis are often forced to navigate lives riddled with change. Some of these changes, the physical, are often abundantly obvious to the outside world. Others, the changes that occur within, which are necessitated by the patient’s need to cope with their changing physical circumstances, are often only perceived by the patient themselves, or those closest to them.

From the moment of diagnosis, change becomes a constant way of life for the stricken, and the uncertainties associated with a disabling disease only serve to amplify the anxieties felt by the patients suffering from it. The physicians call MS a heterogeneous disease, meaning that it can present quite differently from patient to patient. Be that as it may, no matter how the disease presents itself physically, psychologically all patients share a fear of the physical destruction that can be wrought by the disease, and the resulting life changes that may be forced upon them.

I can quite clearly remember the haze of confusion that engulfed me in the days and weeks following my diagnosis, a sense of befuddlement heightened by the fact that the simple act of diagnosis had forced a sudden, irrevocable change in my reality, a permanent alteration to my sense of self. Although my symptoms at that point were largely invisible, I knew that I now stood apart from the crowd, that the so-called problems that I grappled with pre-diagnosis were dwarfed by a larger one that lurked within me, one that had the potential to change my life in ways that were almost too terrible to contemplate.

Though my knowledge of MS at that time was quite limited, I knew from the moment of my diagnosis forward that my life would never be the same. Even as I vowed to fight the disease with everything I had, and consciously told myself that this hurdle needn’t be an insurmountable wall, the research I was obsessively doing to educate myself didn’t paint quite so confident a picture. Yes, many patients were able to fend off significant disability for years and sometimes even decades, but others found themselves caught in the jaws of an insatiable monster, their lives twisted in ways they once thought impossible. Deep inside I knew that waves of changes were coming; it was just a matter of how destructive they would be and how fast they would crash ashore.

Indeed, my life now, just about 10 years later, bears little resemblance to the one I lived on the day I first noticed my right knee buckling ever so slightly with every step I took. A snapshot of my existence taken just before my diagnosis compared to one taken at this very instant would reveal changes so dramatic as to be almost surreal. The path from then to now is paved with incremental changes, each following a logical progression, but as I travel down that path the sum total of those changes seems anything but logical.

Through conscious effort I’ve managed to find a measure of solace and sometimes even contentment despite the effects of the disease, but not a day goes by that I don’t find myself at least once experiencing a terrific moment of shock at the toll the disease has thus far exacted. And then the knowledge that further changes are surely coming briefly crystallizes and compounds that shock, like a sudden chill stabbing through a drafty window frame, until with effort I force myself back into the relative safety of present. There is no getting used to the situation, rather, one learns to live with it largely because there is simply no other choice..

The physical changes inflicted by my disease (which now may or may not be MS, depending on which doctor you ask) that impact my day-to-day existence result from a toxic brew of symptoms. Muscle weakness, spasticity, fatigue, and a storm of other symptoms subtle and possibly nameless combine to grip me in their own diabolical custom-made vise. The progressive nature of the illness makes mentally coming to terms with any current state of disability a difficult proposition, since without some form of intervention it’s almost certain that more losses are to come.

Some patients are fortunate in this regard, and their disease plateaus at a certain point, stabilizing their state of disability, at least for a while. My disability, though, has thus far shown itself to be a constantly moving target. Trying to throw a psychological net around it so that it can be assimilated into at least a semi-permanent sense of self has proven to be an exercise in futility, like attempting to collect soap bubbles momentarily floating through the air. Change, then, has become a constant, and my life over these last 10 years can be charted by the mental and physical adjustments made to accommodate an ever transforming new normal.

Starting at day one and plotting my course to the present, walking with a limp progressed to walking with an ankle brace, and then to walking with a cane, as the distances I was able to travel grew ever shorter. Soon after came a power wheelchair, at first only used outside of my apartment, but eventually inside as well, much to the chagrin of my apartment’s walls, doorframes, and certain pieces of furniture. Walking is now reserved for the few clumsy and increasingly difficult steps between my chair and the bed, or my chair and my computer, or my chair and wherever else my chair can’t quite reach.

Of course, mobility issues are only part of the physical damage done by the disease. These myriad physical changes have made necessary alterations to my very definition of who I am and the qualities with which I define myself, as the disease methodically stripped away layer after layer of the superficialities that, over time, I had come to believe were the building blocks of “me”. The impermanence of what once seemed to be the foundational elements of my life speaks loudly of the tenuous fragility of what most consider their reality. In fact, the only permanence I can now count on is change, and living life in a state of constant physical flux requires ongoing psychological adaptation as well.

Unlike the changes to my physical self, which have been decidedly negative, many of the psychological changes that I’ve undergone have been surprisingly positive. I’ve certainly gained a sense of perspective, as many of the problems that vexed the healthy me have been revealed to be mere trivialities. Since the disease itself appears to delight at taking whacks at me, I’ve compensated by trying to be easier on myself, though self-criticism sometimes still does get the best of me. I’ve gained a tremendous amount of empathy for the downtrodden, victims not only of disease but also of circumstance, especially if those circumstances are not of their own doing.

Above all, I’ve learned the immense value of striving to stay rooted in the present, as the now, this very moment, is all we ever truly possess. The past is but a collection of memories filtered through a veil of years, and the future a place populated, courtesy of the disease, by some potentially very real monsters. Even if the now isn’t ideal, you do yourself a tremendous disservice by not attempting to fully occupy every moment. Far more than platinum, gold, or diamonds, time is the most precious of commodities, as it is irreplaceable and grows scarcer with each passing second. Used properly, the past is a tool that can best inform us how to make the most of the present, but it’s so very easy when faced with a present that is wrought with hardship to instead use the past has a sanctuary, attempting to blot out what is with memories of what was.

Though this may provide some temporary and sometimes much-needed comfort, ultimately one must find the resolve to seek the nugget of good that always hides somewhere in the present, even if finding it requires digging through layer after layer of psychological and spiritual pain. For each of us the composition of that glimmer of good might be quite different, but reason to hope, I think, is an essential ingredient. Once this labor is done, and the nugget of good uncovered, it must be held tightly and nurtured, and carried through the next moment, and then the moment after that.

Change is never easy, and the sea of change engendered by a crippling disease can be especially cruel. It can be tremendously difficult to not get caught in its currents and dragged under, and often the more one struggles the tighter gets the grip of its tides. Rather than wasting precious energy fighting the pull of the roiling ocean within, practicing kindness to self and making some effort to accept what is allows one to let go and float along the crests of the turbulent waves of distress, instead of fruitlessly struggling while being pulled under by them. This can be the key to finding respite amidst a raging storm, and ultimately making your way to calmer waters.

Attempting action through inaction is of course easier said than done, especially when the changes are coming hard and fast and it seems that there is no time to even take a breath, but taking charge of the raging elements within to create your own internal reality is the only way I know to soothe the savage psychological goblins of progressive illness. We must never stop fighting the disease, but in order to properly do so we must consciously give up the fight we sometimes wage against ourselves, and focus our efforts instead on the very real beast at hand.

I Got A Rock

(For those who receive these posts by email, this essay contains a video, which can only be viewed on the blog’s website, www.wheelchairkamikaze.com)

In October, 1966, one of my all-time favorite TV shows, the Halloween classic “It’s the Great Pumpkin, Charlie Brown”, was first shown on American TV. Featuring Charlie Brown, Lucy, Linus, Snoopy, and the rest of the Peanuts gang, the program’s storyline revolves around Linus’s heartfelt belief that every Halloween a legendary character known as The Great Pumpkin rises out of a pumpkin patch to fly through the air delivering toys to all the world’s children.

I was three years old when the show first aired, and my mom was so taken with it that for several years after, much to my delight, some shiny new toys would appear in my bedroom every Halloween, delivered by The Great Pumpkin. They’d always be there when I returned home from trick-or-treating in our apartment building, going floor by floor in my costume, knocking on doors and collecting goodies in my trick-or-treat bag. The thrill of trick-or-treating and then finding new toys in my room made Halloween one heck of a holiday for the little me. Lots of sugar and brand-new toys, what kid could ask for more?

One part of “It’s the Great Pumpkin” has the Peanuts gang out trick-or-treating, going house to house collecting goodies from their neighbors. That is, most of the kids receive goodies; our hapless hero Charlie Brown is always tricked rather than treated, like so:


Yep, when the other kids delightedly look in their bags and announce the candy goodies they’ve received, poor Charlie reaches into his and displays his joyless bounty, glumly stating, time after time, “I got a rock.” This heartbreaking little scenario sums up life for poor Charlie. Despite being a kind and gentle soul, more often than not, when the fates hand out their tricks and treats, Charlie Brown almost always gets stuck with a rock.

At the time of my diagnosis, Charlie’s lament, “I got a rock”, immediately sprang to mind. Just when things finally seemed to be coming together, when the trajectory of my life was in a long anticipated ascendancy, the very foundations of my existence were torn asunder by a big demyelinated lesion at the base of my brainstem, a great big rock thunking down right in the middle of life’s goodie bag. I’m sure everybody else who’s ever received such a diagnosis knows the feeling all too well. That damned stone was so heavy that it knocked me off balance even before the disease itself would upset my physical equilibrium, and its unruly weight grows ever more difficult to wrestle with as the disease progresses with the passage of time. For sure, I got a rock, as has everybody else stricken with a chronic disabling disease.

As I became more disabled and forced to the sidelines, I watched, slightly dumbfounded, as the rest of the world simply went on without me, never even skipping a beat. Certainly, my illness has rocked (pun intended) the lives of those closest to me, but outside of that small circle, it’s almost as if I simply went “poof”. I don’t begrudge my former coworkers and acquaintances their successes, and I’m truly saddened to hear when one has met with misfortune, but the acute awareness of my absence from these goings-on is something I’m not sure I’ll ever get used to. I’m now stuck on the outside looking in, constantly grappling with a great big rock that somehow landed in my goodie bag, while most everyone around me continues collecting treats, even if those treats often go unrecognized.

MS itself has definite geologic properties. Certainly, my weak and spastic limbs have become as if made of stone, uncooperative ballast that makes accomplishing previously simple tasks maddeningly impossible. The overwhelming fatigue that has become my constant companion has me feeling as if I’m playing the role of Sisyphus, a character forced in Greek mythology to forever roll an immense boulder up a hill, only to watch it roll back down again, over and over again. Intellectually, I always understood that tale to be one of perpetual frustration, but now, physically, I’ve come to fully empathize with the exhaustion that must’ve plagued old Sisyphus. He got a rock, too, quite literally, only he was a right bastard, cruel and deceitful, and his fate was justice meted out by the gods. I certainly was never anybody’s idea of an angel, but I’m pretty sure the heft of the rock I’m lugging around far outweighs whatever transgressions I might have committed.

Yes, I got a rock. Although this stone is a heavy burden, I try to keep in mind that getting stuck with a rock need not be a purely terrible thing. Surely, having a rock can even sometimes come in handy. They’re good for throwing at people you can’t stand, for instance those who say things like “but you look so good” or “I have MS but MS doesn’t have me”, or to stone some of the self-righteous jackasses who with distressing regularity have “MD” after their names and the insensitive clods that often tend to them. It's also fun to lazily skip stones over the surface of lakes and ponds, a mental metaphor I use to remind myself that I actually never really liked working, and being forced to “retire” has allowed me to pursue interests and cultivate talents that might otherwise have forever been neglected.

Remember too that the pyramids of Egypt are made of stone, as is the Cathedral Notre Dame, and Michelangelo’s David. The rock that has so disrupted my goodie bag has led me to meet many fine people and make friends with folks I otherwise would have never gotten to know. It’s made me re-examine my priorities, bringing into crystal-clear focus the precious little in life that is truly important. That damned rock has given me an understanding of how downright miniscule were so many of the trivialities that I used to consider problems, slight bumps in the road that I could neurotically conjure into mountainous obstacles to endlessly fret over. It has also inspired me to write words that have, much to my astonishment, been read by so many people in so many places, and perhaps, if even in just the smallest way, somehow helped some of them.

The Great Pumpkin hasn’t left toys in my room for about four decades, but that’s okay, I’m grateful that I was ever on his list. Charlie Brown might have only found rocks in his Halloween bag, but he was the hero of the Peanuts stories, not the kids who got the candy. Though he had to suffer a beagle who liked to make believe he was a World War I flying ace, a best friend to couldn’t be without a security blanket, and the indignity of often being called a blockhead, in the end Charlie’s simple humanity always seemed to save the day.

Would I give back the rock that was forced upon me, despite the insights and understanding it has led me to realize? You better believe it, and faster than you can say “pumpkin patch”. Being sick and getting sicker sucks, but I have no choice in the matter. I do, though, have a choice in what I do with my rock. I can let it crush me beneath it, or I can at least try to reverse places, to stand on top of it and take advantage of the view. Given the polarity of these two alternatives, as long as my life still has life and is not merely an existence, there’s really no choice at all. And who knows, maybe one of these days I’ll find that some fine chocolate has displaced that rock. It may be the longest of longshots, but stranger things have happened. After all, I’m the only real life person I know who got presents from The Great Pumpkin himself.

Thanks, mom.