Saturday, July 30, 2016

Essence (Repost)

(Yes, I'm still here, but also still in hiatus mode. I know it's been a while, but I have finally started on a new essay, so this will likely be the last of my "blast from the past" reposts of musty old Wheelchair Kamikaze essays. This one was originally posted back in April, 2011, and received a very generous response from my readers at the time. I hope whoever has hung around throughout my prolonged vacation from the blog will find some value in this piece.)

matryoshka_nest Living with progressive Multiple Sclerosis has forced me to contort my mind, body, and spirit in an never-ending exercise in adaptation, as my mounting physical disabilities force me to make my way through an increasingly strange world designed by and for people with fully functional limbs. The manipulations needed to adjust for functional deficits involve not only the body, but the mind as well. As more and more of the outside world creeps beyond the reach of my diminishing physical abilities, the inner self must begin jettisoning vestigial notions of identity that simply no longer apply. Objects once immensely useful and sometimes cherished are stripped of their functional value, and with them parts of my identity are stripped away as well.

Our sense of self is inevitably influenced by the outer world and our place in it as we make our way through life and undergo the many changes our paths require, some of these changes chosen and others imposed. In our hyper consumerist society the link between material objects and self-identity begins at a very early age. I vividly remember the embarrassment of discovering, in the fourth grade, that I was wearing the "wrong" sneakers. Forty years ago the choice of children's athletic footwear was miniscule compared to the mind-boggling galaxy of brands and styles that exist today, but even so, wearing an inferior brand (in my neighborhood, they were called "skips") meant you were somehow an inferior person, worthy only of scorn and ridicule.

Even as a kid I instinctively realized how asinine this notion was, and yet the social pressures were such that it was impossible not to buy into this ridiculous narrative. Though my no-name sneakers were perfectly functional I was mortally embarrassed to be wearing them, as they weren't Pro-Keds, Converse, Adidas or – gasp – the holy of holies, the hallowed king of all 1970s boys footwear: majestic blue suede Pumas, called "Clydes" because they were endorsed by Walt "Clyde" Frazier, a New York Knick and all-time basketball great.

Clydes were so out of reach for most of the kids in my blue collar Queens neighborhood that when one of my classmates suddenly showed up wearing a pair, all the rest of us could do was stare, rendered speechless by wonderment and intense envy. Suddenly, this boy who had been strictly middle of the pack was now elevated to the top of the pecking order. We knew it, and, more importantly, he did too, and he fully embraced the part. He was cool, and I was not, sentenced to fourth grade social purgatory by my mortifying footwear.

To my eternal ecstasy, in the summer between the fourth and fifth grades, my dad surprised me with a pair of blue suede Clydes, and on the first day of the fifth grade, I was met with a gallery of faces wearing the same stunned expression I had worn the year before, the eyes of all of the boys in my class fixed unblinkingly on my feet, an astonished look of shock and awe frozen on their faces. Funny thing was I had grown so used to wearing the shoes over the summer that it took me a few seconds to realize just what had elicited such a reaction. When I finally made the connection, man did it feel good. I found my 10-year-old self almost magically transformed, my blue suede sneakers the elementary school equivalent of Cinderella's glass slipper.

As I grew into an adult, I found this same strange interplay between the inner self and outer perceptions repeated time and time again. In my 20s I was the bohemian rock 'n roll rebel, and my black leather jacket, tight blue jeans, and Spanish healed boots proved it, just like it did for all the other nonconformists I hung out with who all wore subtle variations of the same exact outfit. Of course, my self-identity wasn't rooted entirely in the clothes on my back, as it was that inner identity which led me to choose the way I presented myself to the world. The relationship between inner and outer self is symbiotic, each feeding off each other in a twisting and ever ongoing interplay. Still, I remember slipping into my first black leather jacket and the giddy sense of self satisfaction that it conferred. I just couldn't have been more impressed with myself.

As more years flew by, the interdependence of what I owned and who I was continued its complex dance. After all, the clothes we choose to wear, the furnishings with which we decorate our homes, the careers we pursue, the cars we drive, and even our mates all represent the identity we elect to reveal to the outer world. For some, that display is in close concordance with the inner person, but for others, it really is a show, a contrivance, some people consciously hiding their real selves behind a purposefully blinding array of baubles, bangles, and beads. It's important to learn how to recognize these folks, and avoid them because for the most part they are trouble. They may not actually mean harm – though some do – but the dissonance between their projected self and the person within inevitably causes inner conflict and stress which, like a contagion, can soon spread to everyone around them.

By the time of my MS diagnosis at age 39, the interplay between the inner me and the objects I selected to represent myself to the outside world were a finely woven fabric. Unless a person chooses to live a monastic lifestyle, this meshing between the inner and outer, given the super materialistic world we live in, is just about inevitable. Even the monk with his threadbare cloak and vows of poverty has chosen a lifestyle that is a statement to the outside world. After all, one can be threadbare, poverty-stricken, and pious without advertising it by taking an oath and donning sackcloth and sandals.

When I was diagnosed with progressive MS, I was many things; a DVD producer, the husband of a lovely woman, a driver of sports cars, a collector of antique watches, a socially active Manhattanite, a sharp if funky dresser (if I must say so myself), a devoted dog owner, and dozens of other labels and projections that influenced not only how others perceived me, but also how I perceived myself. Suddenly I had a new tag, Multiple Sclerosis patient, and one with an aggressive form of the disease at that. This new label would soon mushroom and overtake many of my other outward incarnations, as my diminishing physical abilities forced me to give up many self-defining activities and diversions, and rendered many of the objects I once held precious completely and utterly useless.

Like opening a Russian doll within a doll within a doll, the disease, as it whittled away at my physical abilities, forced me to psychologically peel back layer after layer of shifting self-identities. I found that this process is not without pain, as many of those once projected but now obsolete selves were founts of much pride. Some were badges of honor, others bandages covering old wounds. Stripped of outer distractions and contrivances, and in relatively short order forced to "retire" from the working world, I was left to ponder what was left of me in the absence of a lifetime of accumulated pacifiers, identifiers, and diversions. The process can be downright scary, as it leads one to consider one of the crucial questions of the inner universe: at my essence, who am I?

Just as a chemist works to break down complex compounds to discover the individual molecules from which they are made, chronic progressive illness puts a personality under mortar and pestle, grinding away the web of complexities that buffer the core of a person from themselves and from the world at large. As my illness has forced me to adopt a simpler life, it's also brought forth a simpler Marc, living an existence almost preadolescent in nature. Strangely, along with restoring a kind of innocence the experience has coalesced much of the wisdom I barely knew I had accumulated through the years, in many cases revealing insights that I hadn't consciously realized I possessed, many of which would've certainly come in handy when I was healthy. It has allowed me time for introspection, time much needed to digest all of the changes being wrought, time required to assimilate both the losses and the gains.

Despite the uncertainties concerning my physical condition, I've discovered an intellectual confidence, and the ability to be alone without being lonely. I often used to compulsively crave the companionship of others even though I frequently felt alone in a crowd, that crowd offering comfort and distraction. Gone is the desire for bright lights and constant action, replaced with the knowledge that the greatest blessing on earth is a quiet night at home with loved ones. Faced with serious illness, all abstraction is stripped from the concept of mortality, and I've come to value quality over quantity. My patience for trivialities, some of which used to consume me, quickly dwindled, and continues to do so.

I find that I value honesty and kindness more than ever, and that the person it's most difficult to bestow those two gifts upon is yourself. In the harsh light of progressing disability, past mistakes and missed opportunities become brightly illuminated, and the challenge lies in not only learning from those errors, but also in forgiving yourself for making them. Taking inventory of oneself can be difficult when some of the items hidden in the darkest corners of the soul have been shoved out of sight for a reason. But in confronting them, their negative influences, some of which have manifested for decades, can be weakened and even broken. Although physical limitations may continue to mount, emotional liberation can be achieved.

It is in so many ways a heartbreaking shame that this opportunity at self-knowledge comes at such a dire cost. Without confronting crisis, though, the motivation for such inner exploration is very easily lost among the constantly shifting circumstances of existence. Receiving a serious diagnosis has the effect of pressing the pause button on the ever unfolding narrative of life. The emotional process of confronting chronic illness is searing, but it is this conflagration of the soul that allows for the exposing of the essence within. It is a process, I think, that is never fully complete, and as the physical insults inflicted by the disease mount, it becomes clear that it is the journey, not the destination, from which all lessons are drawn.

I will forever curse this creeping paralysis, but at the same time acknowledge the opportunity for self-illumination it has provided. I've rediscovered parts of myself I hadn't even realized I'd lost. Even as my physical abilities diminish, my essence becomes more and more revealed. The battle with the disease continues, bolstered by a refreshed resoluteness of spirit.


  1. Hi, I read about you yesterday for the first time. I guess the stars aligned. I was diagnosed last year. So very scary, I am so very tired of feeling sick and so afraid. Reading the story about when you describe the lp and learning the lines from the king and I made me feel hope. You are an amazing writer. Thank you, words really can't express how grateful I am. I have not laughed in quite a while. I hope today is a good day for you. I wish I could make it all go away for all of us. Wishes........

    All the best

  2. Marc, thank you for re-posting. We all have much to learn / relearn from each other's journeys. Tom

  3. I have trouble comprehending long reads, so I am doing a couple of paragraphs at a time. So far, very descriptive and appropriate

  4. You have nailed it true so true.

  5. I'm still here and still thinking of you. I'll be back home next week with some time on my hands, hope to catch up with you then.


  6. Hi Marc. Great article, thank you. :) My husband was just diagnosed with some form of advanced MS. (They thought at first PPMS, due to how advanced and "severe" it looked in the MRI. Though with his mild symptoms, they now say they don't know). Anyway. Great article. You're such a good writer and I loved your insights. :)

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  8. I once read the term "post-traumatic growth." This is what I've received from my M.S. and so you have too. Appreciate your insights.