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.

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…

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.