(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…

Changes, Inside And Out

Change (Photo credit: mbgrigby)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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