(Not) Born This Way– Repost

(I’ve been fighting the creeping cruds for the last couple of weeks and haven’t felt up to composing 

a new essay. so, I’ll offer up a “Best of Wheelchair Kamikaze“. This composition generated a lot of response when it was first posted about two years ago, and I hope you find it worthwhile the second time around. Stay tuned for a new essay, coming just as soon as the cruds recede…)

Later in May I’ll be marking the 13^th anniversary of my official diagnosis with Multiple Sclerosis. Believe you me, the date won’t be punctuated by any festivities, but more likely with a shake of the head. Thirteen official years with this motherfracker and the reality of it is still a shock despite my mounting disabilities and the indignities that go with them. At this point my healthy days are becoming a distant memory, so much so that many of the details of my way-back-when life have taken on a dreamlike quality, as if they are no more than the ethereal whisps of a somnolent mind.

But no, indeed there was a time when I was healthy, and yes, I did actually do all of those things that are stored in my memory banks. Thing is, looking at me now, due to the unfortunate developments of the last 13 years nobody could ever guess at the experiences that shaped me. This certainly wasn't true when I was well, when my outward appearance most definitely reflected many of my life's experiences, my likes and dislikes, and, I think, something of the essence of my soul. Though I wasn't a peacock, I did take pride in my appearance, and often wore a rotating selection of the antique wristwatches and jewelry (some of the jewelry dating back to ancient times) that I passionately collected. Yes, I'll admit to a touch of vanity, but mostly my outward appearance was simply a natural extension of the person within.

One of my favorite pastimes is people watching, and part of what makes that activity so endlessly fascinating is imagining the life of each person spied, constructing an off-the-cuff narrative of their past, present and future. Writ large on many folks is an imprint of their lives, of dreams and aspirations filled or failed, of triumphs exulted and disappointments suffered. That sly looking older gent, snap brimmed hat worn at just the right angle and eyes all a twinkle certainly had his adventures, quite likely including a few too impolite to be told in public. Was he CIA or Cosa Nostra, and is there really a difference? That fashionably retro young lady, trying so desperately to come off cooler than a Frigidaire, masking not so long ago awkward teenage years and a mass of present insecurities roiling inside, her wannabe Audrey Hepburn exterior a veneer for the Olive Oil heart pumping within.

Most of us project who we have been and who we want to be through the image of ourselves we construct for the outside world, some more consciously than others but almost all having their tells. Much to my chagrin, though, my current wheelchair bound, physically decrepit state serves as the ultimate unwanted camouflage. Spastic, atrophied limbs and my mechanical means of ambulation paint a picture likely to overwhelm any I might otherwise want to project. When I first got the chair and was less disabled I made it a point to try to be the most fashionable gimp possible, choosing clothes and accoutrement that screamed “personality”. Now, though, forced by the ravages of my illness to wear garments picked far more for practicality than self-expression, my outward appearance speaks primarily of my medical predicament and not of the life that preceded it.

It’s strange how invisible one can feel when sitting in a hulking 350-pound mechanical monster. The simple fact is that most healthy folks don’t spend much time contemplating the person and personality sitting in the wheelchair, preferring to devote their thoughts instead to less morbid topics. Thinking too hard about the person in the wheelchair might provoke some rather unpleasant truths, including the disturbing reality that with a single stroke of bad luck that person in the wheelchair could be them. It’s much easier and less troubling to simply assume that the wheelchair people had just been born that way, or had in some other fashion materialized in their present state fully formed, like a pod person from The Invasion of the Body Snatchers.

Well, for the record, I’d like to state that I was definitely not born this way. This summer it will be eight years since I was forced into my first wheelchair, and about 11 years since I exhibited my first blatantly obvious outward signs of disability. The life I led before MS intruded upon it was varied and colorful, filled with experiences ranging from the ridiculous to the transcendent. And some that were transcendentally ridiculous.

At age 17 I worked for a dirty magazine, at 23 I was the lead singer of a punk rock band, at 30 a creative cog in a large buttoned down multinational corporation (yuck), and at 36 found myself heading up the DVD production department at one of the foremost music/TV/video production facilities in the world. 

I played an important part in the making of over 300 mostly music related DVDs, and have a platinum record on my wall and a listing on IMDb.com to prove it. And even though that all sounds interesting in the telling, I never found much satisfaction in my work life. 

I was a habitual night crawler, carousing past dawn more times than I can remember or count. To this day I’m rarely in bed before 3 AM, and strive to be blissfully ignorant that there are two 10 o’clocks in one day.

I suffered several broken hearts, but also broke a few along the way (sorry for that). I learned that although the faces and circumstances of each heartbreak differ, the heart tends to shatter along the same fault lines every time. And that after each heartbreak, which I neurotically nurtured, I was only as alone as I wanted to be. New romances magically appeared just as soon as I opened myself up to their possibility and stopped pining for loves lost.

I was almost murdered (twice), suffered a detached retina after hitting a really big guy in the fist with my eye, and once unceremoniously projectile vomited at my boss’s table during a raucous office Christmas party. Oops.

I drove fast cars way too fast (how else to drive them?), bet on fast horses that mostly turned out to be not quite fast enough, and fasted on Yom Kippur.

I shot video professionally while flying in vintage war planes, police helicopters, hot-air balloons, and even the Goodyear blimp, twice.

I jumped out of an airplane.

I came face-to-face with a 10 foot bull shark while snorkeling over a reef a few miles out in the Atlantic off the Florida Keys. I wish I could say that I faced the moment with steely resolve, but in plain fact I tried my best to run back to the boat that brought me there, proving once and for all that I am not the son of God and cannot walk on water. This did nothing to ingratiate me to my then girlfriend, left behind in my panicked wake. Please see the note on heartbreaks, above.

I won the lottery (for thousands, not millions), shot a hole-in-one, and came in first in a 500 player online poker tournament.

For a while I swam a mile every day, slicing through the waters in a meditative state stoked by the womb like environment of the pool and the repetitive physicality of the exercise. How I miss that.

I made friends with some very special people, relationships that matured beyond mere friendship to become family. These precious folks are an integral part of who I am and how I view the world. And I owe most of them long overdue phone calls.

I married an angel. 

At times I've been down to my last dime and at others have been flush with cash, and learned that what my grandmother used to tell me about wealth when I was a kid is true: rich or poor, it’s nice to have money.

I could go on, but I’m sure you get the gist. I realize, too, that my becoming disabled has afforded me some extraordinary experiences that I otherwise certainly would’ve missed, and not all of them involve unpleasant medical procedures. Through these pages I have touched and been touched by people from all over the world. My MS “get out of work free” card gave me a reprieve from the working world, and allowed me the freedom to dust off parts of myself that had been left neglected for decades. I’ve made some very special new friends who are in one form or another members of the MS club. I owe most of them phone calls, too.

Despite the fact that I am, of course, still the sum of all of these parts, as my disabilities mount they increasingly dictate the persona the public at large sees when I venture outside my apartment. It’s impossible for them not to, as my wheelchair has no invisibility button and my withered and weakened limbs can’t be camouflaged by even the most snappy pull over shirts and elastic waisted pants. I know I'm not alone in these feelings, as I sense some of the same frustrations in the knowing glances and nods exchanged with other wheelchair users that I pass on the streets of New York. Funny thing is that some of the most interesting people I’ve ever met are fellow wheelchair jockeys, most of them imbued with a quiet wisdom and sense of the absurd accrued by enduring the foibles of our shared tribulations. 

Indeed, most of us in wheelchairs were not born this way, and if that fact makes some members of the healthy world uncomfortable, well, sorry for that but get over it. Although a quick look at me may no longer reveal the kernel of who I am and where I’ve been, I'd be happy to share the lessons learned and laughs picked up along the way with anybody who would care to hear them. I am much more than this faulty and misshapen body; there's still a person in here filled with all the simplicities, complexities and idiosyncratic contradictions I've collected all these years. To find out what lurks within requires but one magic word. Hello.


Writing this essay brought to mind a wonderful song written and recorded by John Prine in 1971 that touches on many of these same themes, though in the context of old age rather than disability. It’s one of the most poignant songs I’ve ever heard…

Me, Myself, and MS

(The Multiple Sclerosis Association of America asked me to write a guest post for their blog, MS Conversations, on the subject of MS and relationships. This is the essay I wrote for them. Please check out the MSAA's website (click here) which offers a wealth of info on all aspects of the disease, and material and financial help to MS patients in need.  Also visit their blog, which features posts from many different writers (click here). The MSAA is a terrific organization, and I hope you'll take some time to get to know them.)

Beginning at the moment of diagnosis, people with multiple sclerosis face a rogue’s gallery of disorienting circumstances. The long process of socialization that starts when we are children never prepares us for life with a chronic, potentially disabling illness. Newly minted MSers often find themselves thrust into an alien landscape without the benefit of any maps or navigational aids, left to find their way through a haze of fear and confusion. The social compact which we are taught almost from birth – work hard, play well with others, and your rewards will be reaped – is smashed to smithereens by these four simple words: “You have multiple sclerosis.”

Among the countless aspects of life impacted by the MS are relationships; both the external we have with others and the internal we have with ourselves. Several studies have shown that the divorce rate among couples with MS is significantly higher than those of the general population. Adding the responsibilities of “caregiver” to a spouse or lover can be too much for some to bear. Many friendships are held together largely by shared experiences. If a person with MS is no longer able to engage in their previous level of social activity, those attachments can fray and sometimes break entirely. Old relationships are often replaced by new – some of my closest friends are now other people with MS, who understand the complexities of this odd life without need of explanation.

Perhaps the most important and least acknowledged relationship affected by MS, though, is internal, the one a patient has with themselves. Facing the realities of life with a chronic and potentially debilitating illness forces one to reshuffle priorities, reorient and sometimes abandon long-held hopes and dreams, and ultimately grapple with who they are at the very core of their being. 

Nothing defines the notion of mortality more sharply than being diagnosed with a serious illness. Gone are the illusions of invincibility that we cling to as we strive to climb the social pyramid. Patients with more benign disease may be able to keep up appearances, but deep inside aspects of life that had long been taken for granted are revealed to be not birthrights but precious gifts, subject to being yanked away by the whims of an inscrutable universe.

For the first few years after my diagnosis, when I was still able to work and socialize much as I had before the onset of my illness, at times I felt as if I was a covert agent, possessed of a vital secret kept hidden from the world at large. As my disease progressed and hiding in plain sight was no longer possible, an inevitable reckoning began to take place. I was left to confront aspects of my emotional history that had long been stowed away in the dusty recesses of my psyche. 

When my accumulating disabilities forced me to retire, effectively bisecting the narrative flow of my life into “before disabled” and “after disabled”, I found it almost impossible to not look back and contemplate the roads not taken, the opportunities missed. Might a different choice made here or there have allowed me to avoid the trap of multiple sclerosis, or to have lived a richer life before the onset of disease? A question without answers, of course, but also a line of inquiry that begs for the illumination of self-awareness. As the Persian poet Rumi wrote, the wound is where the light enters.

MS led to my pondering the me who lurked within, stripped of the material trappings of my healthy life, which more and more became useless as my disabilities mounted. I soon saw that those adornments often served as a sort of camouflage, shiny trinkets employed to distract the overly curious, myself included. Who was I with soul stripped bare by the harsh realities of chronic illness, naked in this strange new world?

I discovered facets of my personality that had been long neglected, and rekindled interests and passions that I’d almost forgotten existed. I recognized and then worked on abandoning self-defeating habits I wish I’d been cognizant of when I was well, behaviors that served no purpose other than to hold me back, then and now. I came to understand the power of forgiveness, extended not only to others but also to myself, and that absolving myself of past mistakes was far more challenging than pardoning the misdeeds of others. Indeed, kindness to self can be the hardest form of kindness to practice.

Oddly, I am more at ease with who I am now than I ever was back in my healthy days. And though I’m loath to grant any positives to my experience with this disease, it would be foolish of me to deny the self-knowledge and maybe even the touch of wisdom that multiple sclerosis has granted me. Although creeping paralysis is becoming an ever-greater presence in my life with each passing day, I am and will always be more than my disease. I’m not a unicorns and rainbows kind of guy, and I chafe at platitudes about the universe only giving us as much burden as we can bear. But I will say this: getting sick and eventually quite disabled has weakened my body, yes, but it has also strengthened the spirit within.

Transabled

An able-bodied friend and I recently discussed the swirl of issues surrounding transgender people, spurred by the President’s sudden tweeted edict banning transgender volunteers from serving in the military. My friend expressed mixed thoughts on these matters, most of them based on the fact he just couldn’t identify with a person feeling they were somehow born into a body of the wrong sex. I replied that I too couldn’t entirely relate to the emotional state and cultural pain experienced by transgender folks, but my feelings should have no bearing on issues of fairness and equality. If all people are indeed created equal, any person's standing as an equal should not rely on my ability to fully grasp the intricacies of their circumstances.

As those thoughts turned into words and left my lips, the realization hit that in many respects I can identify with at least some of the feelings I expect transgender people experience. I’m in no way equating my own situation with theirs, but thanks to Creeping Paralysis the inner me is now almost entirely divorced from the body in which it exists. I’m not transgender, but I am transabled.

My concept of “me” is still that of the wiry six-footer that I used to be, the mannish boy who reveled in meandering strolls through the city, long-distance swims, a vibrant social life, and a full tapestry of sensual and tactile delights. The self I hold dear bears no relation to the embodiment of decrepitude that confronts me whenever I glance down and take a gander at the frame that sits in my wheelchair. The image staring back at me when I muster up the courage to roll up to a full-length mirror and take a peek is a complete stranger, at least from the neck down. With its bloated belly and ravaged limbs, that thing in the chair is most emphatically not the me that dwells inside of it. The old me lives on, cocooned in my heart and soul, trapped within a penitentiary of increasingly useless flesh and bone.

Though I try my best to quiet the frenzied feelings engendered by this gaping disconnect between body and spirit, at times there is simply no denying the emotional tempest raging within. Confusion, anguish, sadness, a gnawing yearning for what used to be – negative energies all, especially when directed inward. And though I try my best to silence or at least contain them, these destructive emotions seek out seams and points of weakness through which to burst, like grasping fingers of flame blasting through an apartment building window, threatening a conflagration that will take down the entire edifice. Thus far my attempts at emotional alchemy, seeking to turn negative energy into positive, have helped neutralize the threat, but the potential for self-immolation always lurks within.

As a transabled person, I often find myself an alien on my own planet, a victim of a variety of discriminations. Outside the cozy confines of my home, there are bathrooms I can’t use, restaurants and shops that apparently don’t want me as a customer, and passersby to whom I appear to be invisible. Indeed, maybe even something worse than invisible, a threat, a reminder of the ephemeral nature of their own sense of normalcy, a not-so-subtle hint that the supposedly solid foundations of their lives are in fact made of nothing more than gossamer.

The New Testament warns us to judge not, lest ye be judged. As members of a society increasingly riven by social and political divides – largely manufactured by would be puppet masters who seek to gain wealth and power by exploiting the very fissures they have created – it should be contingent upon every individual to live those words as a matter of personal and national survival. It’s far past time to reject outright the prefabricated outrage bombarding us and not fall prey to manipulators who have nobody’s good at heart but their own. We are all in this together, black or white, gay or straight, abled or transabled. If we allow the cracks in our society to further widen, we may all too soon find out what lies at the bottom of the abyss.

To my fellow transabled people I can only offer the same advice that I try to follow myself; make every effort to channel the despair and outrage you feel over being trapped in an increasingly unrecognizable body into some sort of positive force. As the great Johnny Lydon stated, anger is an energy. For your sake and the sake of your transabled brethren, make every effort to direct that energy outward, to vent it in some sort of constructive way if only to not let it combust within you. Cry out against a multiple sclerosis status quo that has made treating but not curing somehow acceptable, confront a medical industry that obscenely sees us first not as patients but as consumers, and offer comfort and understanding to those similarly afflicted.

To the transgender community, I tender my support, as somebody who is now experiencing the turmoil of being transabled. Although we may not live in the same house, I believe we might reside in the same neighborhood. I didn’t choose my circumstances and neither did you. Stay strong.

Celebration-Elizabeth Jameson
Created from MRA image of my brain.

My dear friend Elizabeth Jameson (click here), a disabled person who is far more comfortable with her imperfect body than I am with mine, recently gave the below Tedx talk. Her words and deeds perfectly illustrate the power of directing potentially negative energy outward, thereby forcing it into becoming something positive. Elizabeth’s MS journey found her turned into an accidental artist, transforming MRI images into thought-provoking pieces of fine art. My brain had the honor of being one of her subjects, and the prints she created out of my MRIs reveal that I have a couple of dancers jitterbugging away inside my skull. Thanks to Elizabeth, images of my brain have appeared on the covers of medical journals (click here) and textbooks (click here). Though MS has now rendered her quadriplegic, Elizabeth’s radiant spirit and message of everlasting hope come through loud and clear in this riveting and important talk. Enjoy…

(For those receiving this via email, you can view this video on the Wheelchair Kamikaze website – click here)

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…

(Not) Born This Way

(To those who receive this via email, this essay contains a video which can be viewed on the Wheelchair Kamikaze website – click here)

Later in May I’ll be marking the 13^th anniversary of my official diagnosis with Multiple Sclerosis. Believe you me, the date won’t be punctuated by any festivities, but more likely with a shake of the head. Thirteen official years with this motherfracker and it’s still a shock, despite my mounting disabilities and the indignities that go with them. At this point my healthy days are becoming a distant memory, so much so that many of the details of my way-back-when life have taken on a dreamlike quality, as if they are no more than the ethereal inventions of a somnolent mind.

But no, indeed there was a time when I was healthy, and yes, I did actually do all of those things that are stored in my memory banks. Thing is, looking at me now, except for the unfortunate developments of the last 13 years, nobody could ever guess at the experiences that shaped me. This certainly wasn't true when I was well, when my outward appearance most definitely reflected many of my life's experiences, my likes and dislikes, and, I think, something of the essence of my soul. Though I wasn't a peacock, I did take pride in my appearance, and often wore a rotating selection of the antique wristwatches and jewelry (some of the jewelry dating back to ancient times) that I passionately collected. Yes, I'll admit to a touch of vanity, but mostly I just wanted my outward appearance to be a natural extension of the person wearing the clothes.

One of my favorite pastimes is people watching, and part of what makes that activity so endlessly fascinating is imagining the life of each person spied, constructing a momentary narrative of their past, present and future. Writ large on many folks is an imprint of their lives, of dreams and aspirations filled or failed, of triumphs exulted and disappointments swallowed. That sly looking older gent, snap brimmed hat worn at a jaunty angle and eyes all a twinkle certainly had his adventures, quite likely a few too impolite to be told in public. Was he CIA or Mafia, and is there really a difference? That fashionably retro young lady, trying so desperately to come off cooler than a Frigidaire, masking not long ago awkward teenage years and a mass of insecurities still harbored inside, her wannabe Audrey Hepburn exterior a veneer for the Olive Oil heart pumping within.

Most of us project who we have been and who we want to be through the image of ourselves we construct for the outside world, some more consciously than others but almost all having their tells. My current wheelchair bound, physically decrepit state serves as the ultimate unwanted camouflage, to my chagrin. Spastic, atrophied limbs and my mechanical means of ambulation paint a picture likely to overwhelm any I might otherwise want to project. When I first got the chair and was less disabled I made it a point to try to be the most fashionable gimp possible, choosing clothes and accoutrement that screamed “personality”. Now, though, forced by the ravages of my illness to wear garments picked far more for practicality than self-expression, my outward appearance speaks primarily of my medical predicament and not of the life that preceded it.

It’s strange how invisible one can feel when sitting in a hulking 350-pound mechanical monster. The simple fact is that most healthy folks don’t spend much time contemplating the person and personality sitting in the wheelchair, preferring to devote their thoughts instead to less morbid topics. Thinking too hard about the person in the wheelchair might provoke some rather unpleasant truths, including the disturbing reality that with a single stroke of bad luck that person in the wheelchair could be you. Truth be told, back when I was among the healthy I was one of those who didn’t give much thought to folks in wheelchairs or scooters. Though I’m generally an empathetic guy, I don’t think I ever took the time to contemplate life through the eyes of the disabled, or imagine the path that brought them to their current state. It was much easier and less troubling to simply assume that they had just been born that way or had in some other fashion materialized in that wheelchair fully formed, like a pod person from The Invasion of the Body Snatchers. Dummy.

Well, for the record, I’d like to state that I was definitely not born this way. This summer it will be eight years since I was forced into my first wheelchair, and about 11 years since I exhibited my first blatantly obvious outward signs of disability. The life I lead before MS intruded upon it was varied and colorful, filled with experiences ranging from the ridiculous to the transcendent. And some that were transcendentally ridiculous.

At age 17 I worked for a dirty magazine, at 23 I was the lead singer of a punk rock band, at 30 a creative cog in a large buttoned down multinational corporation (yuck), and at 36 found myself heading up the DVD production department at one of the foremost music/TV/video production facilities in the world.

I played an important part in the making of over 300 mostly music related DVDs, and have a platinum record on my wall and a listing on IMDb.com to prove it. And even though that all sounds interesting in the telling, I never found much satisfaction in my work life.

I was a habitual night crawler, carousing past dawn more times than I can remember or count. To this day I’m rarely in bed before 3 AM, and strive to be blissfully ignorant that there are two 10 o’clocks in one day.

I suffered several broken hearts, but also broke a few along the way (sorry for that). I learned that although the faces and circumstances of each heartbreak differ, the heart tends to shatter along the same fault lines every time. And that after each heartbreak, which I neurotically nurtured, I was only as alone as I wanted to be.

I was almost murdered (twice), suffered a detached retina after hitting a really big guy in the fist with my eye, and once unceremoniously projectile vomited at my boss’s table during a raucous office Christmas party. Oops.

I drove fast cars way too fast (how else to drive them?), bet on fast horses that mostly turned out to be not quite fast enough, and fasted on Yom Kippur.

I shot video professionally while flying in vintage war planes, police helicopters, hot-air balloons, and even the Goodyear blimp, twice.

I jumped out of an airplane.

I came face-to-face with a 10 foot bull shark while snorkeling over a reef a few miles out in the Atlantic off the Florida Keys. I wish I could say that I faced the moment with steely resolve, but in plain fact I tried my best to run back to the boat that brought me there, proving once and for all that I am not the son of God. This did nothing to ingratiate me to my then girlfriend, left behind in my panicked wake. Please see the note on heartbreaks, above.

I won the lottery (for thousands, not millions), shot a hole-in-one, and came in first in an online poker tournament.

For a while I swam a mile every day, slicing through the waters in a meditative state engendered by the womb like environment of the pool and the repetitive physicality of the exercise. How I miss that.

I made friends with some very special people, relationships that matured beyond mere friendship to become family. These precious folks are an integral part of who I am and how I view the world. And I owe most of them long overdue phone calls.

I married an angel.

At times I've been down to my last dime and at others have been flush with cash, and learned that what my grandmother used to tell me about wealth when I was a kid was true: rich or poor, it’s nice to have money.

I could go on, but I’m sure you get the gist. I realize, too, that my becoming disabled has afforded me some extraordinary experiences that I otherwise certainly would’ve missed, and not all of them involve unpleasant medical procedures. Through these pages I have touched and been touched by people from all over the world. My MS “get out of work free” card gave me a reprieve from the working world, and allowed me the freedom to dust off parts of myself that had been left neglected for decades. I’ve made some very special new friends who are in one form or another members of the MS club. I owe most of them phone calls, too.

Despite the fact that I am, of course, still the sum of all of these parts, as my disabilities mount they increasingly pirate the persona the public at large sees when I venture outside my apartment. It’s impossible for them not to, as my wheelchair has no invisibility button, and my withered and weakened limbs can’t be camouflaged by even the most snappy pull over shirts and elastic waisted pants. I know I'm not alone in these feelings, as I sense some of the same frustrations in the knowing glances and nods exchanged with other wheelchair users that I pass on the streets of New York. Funny thing is that some of the most interesting people I’ve ever met are fellow wheelchair jockeys, most of them imbued with a quiet wisdom and sense of the absurd accrued by enduring the foibles of our shared tribulations.

Indeed, most of us in wheelchairs were not born this way, and if that fact makes some members of the healthy world uncomfortable, well, sorry for that but get over it. Although a quick look at me may no longer reveal the kernel of who I am and where I’ve been, I'd be happy to share the lessons learned and laughs picked up along the way with one and all. I am much more than this faulty and misshapen body; there's still a person in here filled with all the simplicities, complexities and idiosyncratic contradictions I've collected all these years. To find out what lurks within requires but one magic word. Hello.


Writing this essay brought to mind a wonderful song written and recorded by John Prine in 1971 that touches on many of these same themes, though in the context of old age rather than disability. It’s one of the most poignant songs I’ve ever heard…

Winter’s Discontents

(Apologies to The Mamas and The Papas)

All the leaves are brown, and the sky is gray
I needed to go outside, on a winter’s day
Struggled with socks, sweater, coat; but when all was done and said
Barely had the strength, to just get back into bed…

Please excuse the above bad poetry (actually, it’s a gross disservice to poems to even call it poetry), but I just couldn’t resist. Here in New York City, winter is once again upon us, and along with the season’s cold and inclement weather, for us gimps the winter months are chock full of hurdles and obstacles that the able-bodied need give nary a thought. Simply donning get all of the cold weather gear needed to brace oneself against the chill can prove so damned difficult that the mere prospect of getting out of the house can be daunting all by itself.

In theory, at least, I like winter. The monochromatic palette of the winter months appeals to my black and white aesthetics, and I spent enough years living in Fort Lauderdale (yechh) to know that most human beings look better wearing several layers of clothing. Back in my healthy days I was admittedly something of a clothes horse, my closets brimming with cool duds. When I married my wife I owned more pairs of shoes than she did, and Karen isn’t a one pair for all occasions type of gal. My fetish for shoes goes way back, and my mom likes to tell tales of how, even as a toddler, I would torment shoe salesman by making them haul out box after box of footwear until I found a pair that met my precocious exacting standards. Why my mom allowed the little munchkin me such free reign to terrorize shoe store employees will have to remain a story for another day, but suffice it to say that I think she quietly got a kick out of my shenanigans.

But I digress, the subject at hand is the perils of winter for those of us trying to get through life with uncooperative bodies. Whereas I used to take delight in such winter wear as warm socks, comfy sweaters, and fashionable outerwear, these days all of these items have been transformed into potential instruments of torture. The right side of my body is almost completely defunct – weak, spastic, emaciated and largely paralyzed. My left side is still functional, but is weakening, seemingly by the day. Additionally, the more effort I exert the less functional my left side becomes, and with my fatigue levels at an all-time high my energy reserves leave much to be desired. All of this conspires to transform the formerly simple act of getting dressed into a feat of exhausting contortions, the anticipation of which often makes the thought of getting out of the house an extremely unpalatable option, even though being sequestered away inside my apartment for days and days on end is a recipe for mental malfeasance that also needs to be avoided. Quite the conundrum, then, once the temperature plummets.

During the warm weather months getting ready to go outside is a relatively simple affair, although struggling into a pair of elastic waisted shorts, a pullover short-sleeved shirt, and slip on shoes isn’t nearly as easy as it used to be. Still, even in my current dilapidated state it’s just a few minutes’ tussle and then I’m in my chair and out the door, willfully ignoring the fact that yes, my disease is indeed progressing. Once the temperatures drops below, say, 60°F, things get infinitely more complicated, and the very fact of my distressing physical decline from one season to the next cannot be avoided. Things that were merely difficult to do last year have now become almost impossible, and no amount of denial can paper over this reality.

The first bugaboo to be faced when preparing to venture out of doors all by myself is a pair of nefarious garments called “socks”. With a little effort and ingenuity I can usually get my left sock on without much calamity, but getting on my infernal right sock requires the use of a not so handy dandy device called the “Deluxe Flexible Sock and Stocking Aid” (click here). Basically, this contraption consists of a piece of relatively stiff but flexible material with two long straps attached. The flexible material can be rolled into a cone, on whose skinny end a sock can be scrunched up and pulled over (this miraculous feat is accomplished by my wife Karen the night before I’m due to make an appearance out in the world). In theory, then, a person can place the device on the floor and insert their foot into the wide end, and then by tugging on the straps pull the sock onto their foot using the flexible cone thing as a kind of guide. I’m sure this works quite well if the user has at least some dexterity in their right leg and arm. My right leg below the knee, though, has as much dexterity as a piece of overcooked fettuccine, so using this device is increasingly becoming an exercise in futility. The notion that I’ve become too gimpy to use a device made specifically for gimps thrills me to no end, let me tell you. As does the prospect of facing subfreezing temperatures without the benefit of a pair of warm socks. Sigh.

Next up in the cavalcade of whimsy that has become the process of my getting dressed are pants. Luckily, a couple of years ago I discovered that the Duluth Trading Company was selling fully elastic waisted decent looking trousers, which negated my needing to struggle with buttons or clasps to fasten my pants, which even back then had become nearly impossible. For whatever reason the company no longer offers these garments, but I was wise enough to stock up while the getting was good. If anybody knows of similar apparel currently available, please let me know. As long as they aren’t too, you know, ugly. Amazing how resilient vanity is, even in the face of progressing decrepitude, isn’t it?

After struggling with socks and pants, next in line are shirts and sweaters. Even the pullover variety are getting harder and harder to manipulate (the button-down kind may as well be radioactive as far as I’m concerned), and after struggling into them a somewhat disheveled appearance seems just about unavoidable, as a sleeve or shoulder always seems to be bunched up or stretched out in a way I can’t remedy given my limited amount of nimbleness. I suppose I should be happy that I can still don these garments, but there’s that dastardly vanity thing again. If I have to be a gimp I want to be a fashionable gimp, dammit!

Last comes the horror of all horrors, the winter coat. I used to wear all kinds of cool leather winter outerwear, retro car coats and flight jackets, but though these garments still hang in our closet, getting them on and fastened without assistance has become pretty much impossible. My mother-in-law, who is quite handy with a needle and thread, altered a standard military issue peacoat into a Velcro fastened wonder for me, for which I am eternally thankful. When closed up, the thing looks like any other peacoat, as mom fashioned the coat to make it look like the buttons are still fully functional, and folks are always surprised and tickled when I simply rip it open, which I try to do with a dramatic flourish. Still, getting the thing on and off of my stiff, spastic, and weakened body is no picnic, but I suppose we should be appreciative for whatever good graces still lay within our domain. So, yes, I’m quite grateful for my one-of-a-kind Velcro fastened peacoat. As I once said in a previous post, it’s like haute couture for the disabled.

Jeez, it looks like I just composed an entire blog post about the scintillating topic of my getting dressed. How horrifyingly mundane. Thing is, this freaking disease has made even the mundane a challenge, activities that had previously been taken completely for granted now fraught with anxiety, pushing my physical abilities to their limits and conjuring up a maelstrom of disheartening emotion. While the boundaries of those physical limits grow ever tighter as the disease continues its relentless progression I endeavor to live by the motto “use it until you lose it”, but as the losses mount the limitations imposed by these increasing deficits makes using what’s left harder and harder and harder. A decade ago, even on the coldest day of the year, I could be dressed and out of the house in 10 minutes, max. These days, that ever so humdrum of activities called “getting dressed” takes about 45 minutes at best, after which I’m often quite literally so physically spent that I’d rather get undressed and climb back into bed than go about whatever business awaits me out-of-doors. 

But there is life yet to be lived, and with dogged persistence my comrades in arms (weak and spastic arms, but arms nonetheless) and I  forge ahead as best we can, each displaying a quiet steadfastness that should be the fount of much pride, if I do say so myself. I will admit, though, that it’s hard to be prideful when you’re stuck with a sweater half on and half off, the nefarious garment doing its best impression of a straitjacket. Damned disease.

If you’ve made it this far through my long-winded description of getting dressed (egad), you deserve to be rewarded with the following musical delight, a version of The Mamas and The Papas “California Dreaming”, performed by the very underrated classic soul and R&B artist Bobby Womack, who sadly passed away earlier this year. Enjoy…

11 Years Gimpy and the Lessons Learned, Part One: Life

March 9, 2003 was a typical late winter’s day in New York City. The temperature was about 30°F, but the sun shone brightly, and in the late afternoon, feeling a little bored and just wanting to get some fresh air, I decided to take my furry pal Stella the Labrador Retriever for a nice long walk. We made our way to a bike path that runs along the Hudson River on the west side of Manhattan and headed north, our ultimate destination the Soldiers and Sailors Monument, a structure which was completed in 1902 and is dedicated to the soldiers and sailors who served in the Union Army during the American Civil War. The round-trip would total about 2 ½ or 3 miles.

We arrived at the monument (a photo I took of it that day is to the right) after a brisk 30 or 35 minute walk, stopping every now and then for Stella to do some serious sniffing and other doggie business, and then headed back home along the old uneven cobblestones that paved the section of sidewalk surrounding the 100-year-old memorial. As we walked, I slowly realized something funky was going on with my legs. I seemed to be wobbling a bit with each step, and with my attention focused on just what the heck was happening with my pegs, I recognize that my right knee was buckling backwards with each stride I took. I stopped, flexed and shook my leg a bit, and then continued on, but the strange buckling persisted.

Being a well rehearsed hypochondriac, a long list of possible explanations for my wonky knee flooded my brain. Could be a pinched nerve, I reasoned, or the first signs of something much worse. Brain tumors always topped my list of obsessive fears, so of course the potential for a brain gobbling malignancy immediately sprang to mind. Other candidates included Lou Gehrig’s disease (another long standing dread), spinal stenosis (which crippled my grandmother), and yes, multiple sclerosis (always high in my pantheon of disease paranoia because my initials are MS). I clearly remember thinking that MS was a distinct possibility.

Thus began my adventures in neurology. Though the limp disappeared after I rested a while, it returned whenever I went for an extended walk, and the distance required to bring it on diminished noticeably over the next couple of months. By late April I was concerned enough to haul my limping ass to my M.D., a general practitioner. Though he initially didn’t think there was much to be worried about, an MRI was ordered, and the rest, as they say, is history.

Fast-forward 11 years, and the embers of that intermittent limp sparked a raging inferno that has consumed my entire right side, which is now essentially paralyzed. Clearly not content with demolishing only half of my body, this neurologic rot has continued on to attack my left side, leaving it considerably and ever increasingly weakened. Throw in a veritable potpourri of other neurologic niceties, such as bladder/bowel issues and sensory problems, along with a mystifying array of endocrine dysfunctions, and I’m pretty sure any aliens looking to abduct earthlings for nefarious intergalactic experiments would take a pass on this particular human. Should war break out, the armed forces could probably best put me to use as a sandbag.

This is not to say that the past 11 years have been nothing but pure hell. Though aspects of them have certainly been hellish, along the way I’ve met and befriended some wonderful people in both the virtual and real worlds, and learned lessons that I’m positive otherwise would have escaped me. While I’m pretty damn sure there are more pleasant paths to enlightenment, grappling with my illness has taught me valuable lessons about myself, life in general, and the realities of modern medicine. To avoid writing a novella, I think I’ll tackle the assorted lessons learned in two blog posts, this one covering some of the insights gleaned regarding life with chronic illness and the realizations that my circumstances have revealed about the human condition (sounds kind of heavy, no?), and a follow-up discussing my escapades within the hall of mirrors that is the modern medicine miracle machine.

So, what has my life as a gimp exposed about me and my fellow humans? First, I’ve discovered that I’m awfully good at doing nothing. And that doing nothing can take up an incredible amount of time. Of course, “nothing” is a relative term, especially when one is down to working with only two somewhat compromised limbs. When getting on a pair of socks can be considered a triumph of the will, expectations naturally become tempered. Yes, I’d love to reclaim my place in the hypersonic land of the healthy, but, barring some paradigm shifting medical breakthrough, that’s not about to happen. So acceptance is the key, so long as acceptance is never confused with submission. I can accept my predicament, and maybe even at times embrace it, but I will never try to reframe it as some kind of blessing or, conversely, roll over and simply let the disease have its way with me. If it turns out the best I can do is just spit in the face of the disease, then I’m going to hock up one hell of a loogey.

I’ve discovered that I have far more fortitude than I ever would’ve imagined back in my anxiety ridden pre-multiple sclerosis life. Watching the disease continuously chomp away at me has been nothing short of horrifying (not really a strong enough word), and yet here I am, still able to have a good laugh, root for the Red Sox, and scream curses at politicians on TV. This fortitude, though, is born more out of necessity than from some hidden wellspring of bravery. I can either curl up into a ball or try to get on with life as best I can, and curling up into a ball would just flat out suck. At times I’ve read or heard others refer to me as some sort of a hero. Let me state emphatically that I am no hero. A hero is somebody who voluntarily puts themselves in grave danger, or otherwise displays some sort of uncommon valor. People who throw themselves on grenades to save their comrades or run into burning buildings to help those trapped within are heroes. I’m just trying to save my own ass.

Delving into medical research, attempting to continue doing photography in some shape or form, and even writing this blog all fall under the category of “saving my own ass”, each of them an expression of my desire to either get better or at least retain a few remnants of the me that used to exist. The fact that this blog has touched so many and maybe even helped others cope with situations similar to mine is tremendously humbling and fantastically gratifying, but rest assured Wheelchair Kamikaze is simply one man’s desperate attempt at screaming out to the world at large “I’m still here!”

Having said that, I owe a tremendous thank you to all who read these words, and an especially humongous expression of gratitude to those who take the time to comment on these pages or send me emails, even if those emails sometimes don’t get a reply. In many ways you have provided a method to this madness, and helped to turn all of that aforementioned “nothing” that I find myself infinitely occupied with into a definite something.

Life lived under the stress of chronic progressive illness has also revealed some of the less savory aspects of my being. Though I am loath to admit it, I find myself at times suffering from a sort of disease envy. Yes, of course I lust for the vigor of those blessed with health, but in a twisted way I also find myself jealous of people afflicted with diseases somewhat less insidious than mine, and sometimes even of those suffering from illnesses that many would consider far worse than my relentless and progressively disabling malady. RRMS, the flavor of MS defined by relapses and remissions, comes with its own set of horrors, but at least there are treatments for the disease, however imperfect they may be, and part and parcel with RRMS come those periods of remission. So, yes, all of you relapsing remitting people out there, you are the object of my envy, as cracked as that may be. I don’t in any way mean to diminish the awfulness of your situation, but I’m just telling it like it is.

Perhaps crazier still is the fact that there are moments when I find myself staring green eyed at illnesses that most would consider beyond the stuff of nightmares, like incurable cancers and even ALS. Now, there’s an ugly admission. Thing is, when those almost unimaginably horrific diseases are done brutalizing those they afflict, they at least have the common decency to kill their poor victims. Not progressive MS, though, fiendish beast that it is. Instead, the dreadful dark at the end of the progressive MS tunnel is the almost unthinkable reality of being forced to live out life as a fully conscious brain trapped in an impenetrable prison of useless flesh and bone. Ghastly, just ghastly.

Is such an end inevitable? No, there are certainly cases where the disease slows down or even ceases, but so far I’ve never had a hint of either, and I’m not even sure that what I have is Primary Progressive MS. I’m never one to give up on hope, and who knows, tomorrow may be the day that some tremendous advance springs forth from some researcher’s test tube. Nobody lives forever, though, and these past 11 years spent contemplating my own mortality have left me wholly and truly unafraid of death. In another 100 years the planet will be populated by a whole new set of people, and I and everyone reading these words will be just the faintest of memories if we are remembered at all. I honestly find comfort in that thought, and it reaffirms my conviction that life is all about quality, not quantity. Cuddly fluffy puppy dogs frolicking with baby bunnies – sorry, just had to throw something in there to lighten the mood…

One entirely unexpected result of my affliction is that, ever since I was forced into “retirement” seven years ago, my life has been split into two distinct sections: my healthy life and my life as a gimp. My rather sudden evac from the ongoing narrative of my healthy life afforded me, after the shock of my new circumstances wore off, the opportunity to look back on that old life and dissect the infinitely tangled strands of decisions, coincidences, actions, and fate that determined its shape. In effect, the experience was almost like attending my own funeral. In many ways the old me is dead, in as much as most of the narrative strands that I’d been weaving have been severed. Hopes and expectations for the future had to be completely revised, targets tempered and shifted, and semi-amorphous plans to rectify old wrongs or revive dreams and aspirations through some future triumphs put to bed. Not that this was all entirely negative, as this fracturing of my existence gave me a chance to glean from the wreckage insights and realizations that have been quite illuminating. Even as my body has deteriorated, my inner life, the one inside my head, has at times achieved a kind of clarity I never would have thought possible. Don’t get me wrong, much of the time I’m just as befuddled as I ever was, but now that befuddlement is occasionally punctuated by moments of exuberant understanding.

I’ve learned how important it is to forgive past transgressions, both those committed by others and, perhaps more importantly, those of your own making. Holding onto old grudges is toxic, but we can grow so used to living with our poisons that the prospect of letting them go can seem excruciating. We’ve all been screwed over by others and by ourselves, but what’s done is done and no amount of indignation, righteous or otherwise, can right old wrongs. Festering anger burns only the one harboring it, and hate is the enemy of happiness. Practicing kindness is of course a virtue, but practicing kindness to self, perhaps the most difficult form of kindness to tender, is a balm for the soul. This doesn't mean giving yourself a blanket pardon, as you must take ownership of the wrongs you've committed, but you also must learn to release them. Not saying that I have the whole kindness and forgiveness thing mastered, but recognizing its importance was a huge step forward.

Being disabled has forced me to accept the help of others, and guess what, rather than being diminishing, allowing others to lend a hand can be empowering for both parties. And in my case, when I say “lend a hand”, I’m not always talking figuratively. I can exhaust myself struggling to put on a coat, or I can accept the assistance of a friend or stranger and save my limited resources for more important things. Hey, these days I’ll even let them zip the damn thing up. I’ve come to understand that this is a classic win-win situation. By accepting, or even asking for, the help of others, you’re giving them a chance to do their good deed for the day and to then feel noble for a while. So in a sense, by asking for help you’re also doing your good deed for the day. Sure, it may take swallowing a little pride, but as they say, pride goeth before the fall. And when it comes to MS, that fall could easily lead to a bruised forehead.

Examining many of the relationships I had in my old life, romantic or otherwise, lifted the veil on what I believe are some truisms about human behavior. One of the biggies is that liars lie and cheaters cheat. Of course, none of us are without blemishes, and we've all done things that would make our mothers embarrassed to have borne us. Most of us suffer varying degrees of remorse over our indiscretions, but there are those out there for whom lying and cheating become a modus operandi. Once a person accepts such behavior in themselves, it’s a surefire bet that they will continue those behaviors, heedless of the damage they may do to those around them. They may protest vigorously that they’ll never ever again do such a vile thing, but you can almost rest assured that somewhere down the line liars will lie and cheaters will cheat.

A closely related insight is that most people assume that others are pretty much just like them. So, habitual liars assume that everyone else lies too, and folks who are by nature primarily honest think that others are generally playing it straight. Danger abounds when these two worlds collide, the brunt of which is borne by the sincere. Therefore, it’s vitally important to recognize people for who they are, though their base selves may be hard to discern under layers of charm and guile, and we can at times he willfully blind to such characteristics due to our own complex psyches. Eventually a person’s true nature will reveal itself, and if that nature includes an acceptance of deceit, recognize it and put that knowledge to good use. This goes for romance, friendships, and business relations.

I’m not saying everyone should live a saintly existence, as I’m a firm believer that some occasional debauchery is harmless, and is in fact essential to living a interesting, fulfilling life. Some of the most remarkable and stimulating people I've met have faults a mile wide, and in fact it's those imperfections that often make these people so beguiling, but do yourself a favor and when dealing with those of this ilk go in with your guard up and your eyes wide open. Nobody is entirely good or bad, it’s all a matter of degree. Some people, though, do have a wicked gravity; be careful not to get sucked in.

Which I suppose brings us back to practicing both kindness and forgiveness, mostly because this essay has become so god-awful long despite my assurances that I wouldn’t write a novella. So please forgive my verbosity, and if you’ve managed to make it this far, I offer you my kindest thanks.

Stay tuned for part two, which will deal with all I’ve learned navigating the medical minefields these past 11 years. I promise, I’ll try to keep it shorter than a Russian novel…