Sunday, April 10, 2011


matryoshka_nestIn my last post, I talked about becoming "The Accidental Alien" (click here), my mounting physical disabilities forcing me to make my way through an increasingly strange world designed by and for people with fully functional limbs. The adaptations 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 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 our 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 chosen and some imposed. In our 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 models 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 recall instinctively realizing 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, 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 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 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 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 that decorate our homes, the careers we pursue, the cars we drive, 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, for others, it really is a show, a contrivance, some consciously hiding their real selves behind a 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 many do, but the dissonance between their projected self and the inner person very often causes conflict and stress within themselves, and then 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 hyper consumerist world we live in, is inevitable. Even the monk, with his threadbare cloak and vow 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 a cloak and sandals.

When I was diagnosed with progressive MS, I was many things; a DVD producer, the husband of a lovely woman, the 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 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 some of those once projected and 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 insights that I hadn't consciously realized I possessed at all, 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 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 crave the companionship of others, even though I frequently felt alone in a crowd. Still, that crowd offered 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, in myself and those around me, 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 faults, but also in forgiving yourself for making them. Taking inventory of oneself can be difficult when some of the items discovered 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 story of a 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.

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  1. Amazing post, Marc. Very moving. And I hope you will not find the following too strange a comment. My dad was a minister, noted for his kindness and gift for explaining the most difficult of subjects in a way that touched people. He would have been proud to have delivered this post as a sermon. I don’t know what kind of writer you were before “MS” came into your life, but you are an exceptional writer now.

  2. The day I was diagnosed with MS I went out and paid and obscene amount of money for a handbag and shoes...if I look good maybe they wont notice the limp?

    Thanks for this post...this weekend finally accepted that I will not be able to work full time anymore and I see a lot of myself in what you wrote.

  3. Hear, hear! Excellent post, and I agree with Peace Be With You, you are an exceptional writer.
    I have found, in addition to stripping down to the essentials in life, MS has also made me less patient with people. I'm very direct and not willing to make nice. This is me and you can be real and honest, or take a hike. I don't have time for shenanigans.
    Not sure if that is good or not, but I'm glad to be rid of all the dancing to others' tunes.

  4. Marc,
    I have often wondered why anyone, especially anyone as obviously intelligent as you, would open their soul up in such a public forum and expose their underbelly as you so often do. Although I still haven’t quite figured it out completely I believe that the answer lies somewhere between because it’s the right thing to do and that MS has already taken so much from you that anything that mere mortals could possibly do seem trivial in comparison. I for one have found tremendous insight and relief in your writing and am honored to join you on your journey. In my eyes you will always be that superstar in blue suede “Clydes”. Thanks for sharing your life with us.


  5. Marc,

    It truly is a shame the cost we need to pay to learn what we should have known. Thanks for the great post. It is encouraging to know that as our MS progresses it causes more individual time, we become more okay with being alone. I think that is hard for the people that have known us pre MS. As someone with the progressive form of this monster as well I feel that though I may not be able to do the things I used to, I am a healthier individual.

  6. Marc, Marc...
    A delicately spun web of literary virtuosity. A professor would sardonically say after one of us 'intelligent' students would, with much labor and toil, create some written effluent to express our grasp of the days lesson. But, the same praise could be given to your work 'sans sarcasm'. Envy. I can express myself in the inner confines of my mind, but when I attempt to compose my thoughts into the written word, I would be far fetched to have my work published by Bazooka Joe Comics.
    My ego aside, I love the way you engage the readers mind with relevant experiences that we can develop our own insights of how we have had to deal with this physical, mental and spiritual impasse.
    To tell the truth, its cool.

  7. As usual, Marc, lots to think about. This piece definitely hit my pause button. I've never wanted to be neatly labeled in anyone's box, but when I think about it, "essence" belies square corners so what am I fighting, anyway?

  8. I've recently subscribed to your blog - well worth spending time out of my day to read - thank you.

  9. A brilliant post...per usual.

    It is sad it takes a tragedy to motivate a new regard for ourself and our values (that sounds so trite, it is almost unforgivable!) But, on the other hand, while we may not be physically friends, but I am honoured to share the experiences of a fellow MSer.

    You and Karen are always in my thoughts and prayers.

  10. This rings true for me. You were able to put to words, so many of the daily emotions I drag around. I want to print this. Give to others and say, "This is what I meant!" To others, I want to say, "I'm sorry." Sometimes my emotions with this secondary progressive MS goes haywire and I'm sure I've lashed out at somebody. Somebody who probably doesn't understand.
    I'm a new blogger, since March of this year. I'm so happy I found this site.
    Is it okay to put it on my blog roll?

  11. I don'think I have ever posted to a blog before...but, I had to comment about this piece. I have read almost everything you have written since my own diagnosis about 8 months ago. I am so grateful that I found your blog, that you are so open and honest and that you have the gift of sharing your thoughts and feelings in such a way that it brings some sense of peace and understanding to the rest of us. This post truly touched my soul. Thank you.

  12. Thank you. Such a thoughtful post and so real. I will celebrate 11 years with MS next month and I have "thought" about writing my own "trip" as it has been illuminating in the most amazing way(s).

    Thank you for provoking me to "think" about getting my years down in words. ck

  13. Very nice, Marc! Your words always ring profoundly true for me. Sue W's words also hit a chord with me; right on, Sue. In any event, most of us, some sooner than later, with or without disease, grow up and start seeing the light. On another note, like Mark Twain said, too bad youth is wasted on the youth.

  14. Marc, you are an amazing writer. I also struggle with PPMS and your post about your journey totally resonates with me. I am not as far along in sorting out where I utimately "need to be" as you are, but I take a strange comfort in seeing you out front, taking a path that I really admire. Thank you for this incredible essay.--Chris

  15. Marc, thank you for describing so eloquently what may of us are experiencing.

  16. Always plucks the strings in my "harp of life".
    Beautiful Marc
    Thanks for lifting me up
    hug Karen
    hug yourself

  17. Hi Folks,

    Thank you for your incredibly generous comments. I promise I'll respond to each one in the next few days, the last week has just been extremely busy for me. Please know that I do read and appreciate all comments made, quite deeply.

    Again, thanks to all of you.


  18. I admire the honesty and integrity of this post. The boyhood you would probably like this piece on sneaks...

  19. Another great post, Marc.
    Thanks, prairiegirl

  20. I sat mesmerized for the ten or fifteen minutes I decided to dedicate to your words, knowing full well that when through I would stand, and walk away from my screen and continue my day unimpeded by anything but my own visions of worth, or worthlessness, depending on my mood, or circumstances. Now, I get to carry your wisdom with me as well, and am far better for it. Sincere thanks for your gift, and your decision to share it.

    My wife is scheduled for an MRI on Tuesday, the beginning of her CCSVI journey. Rhode Island Hospital and The Brown University Medical School, seven minutes from my door (three hours from yours) is conducting a trial. We are participants. I briefly read of your experience with the procedure, and hope to learn more.

    Best to you, Marc.

  21. Carl-thank you

    Peace-what a lovely sentiment, and one deeply appreciated. I think I would've liked to have known your dad.

    Quilter-I think the instinct you followed after your initial diagnosis is one shared by many. Good luck with your coming "retirement", be gentle with yourself and give yourself time to settle in.

    Sue-I too have, at times, found my patience stretched. Perhaps that's where the comfort in being alone is, at least partially, derived. No time for shenanigans, I don't think that's either good or bad, it just is. It can be incredibly frustrating to see others waste what has become so precious to us.

    Charlie-actually, I think I have a lot more underbelly left to reveal. Not that I will reveal it, but letting the guard down can be exceptionally cathartic. I do believe that it's the right thing to do, to be deceptive to such a vulnerable audience is tantamount to evil. I'm glad you found some relief in my scribblings, and I am equally honored to share my path with you…

    Anonymous-it seems that much of what we anticipate with much trepidation is not nearly as bad as we fear once it comes to pass. I'm sure that there must be a tipping point, when the bad does come close to your imaginings of it, but thankfully I think I still have a way to go before falling off that bridge. Thanks for your generous comments.

  22. Wasagaman-thanks, and your description of your professor made me smile. There's an old saying, dances if no one is looking at you. The same holds true for writing. Write as if no one will read what you've written. You might surprise yourself with the results.

    Daphne-nobody's essence can be held in any box. Don't tire yourself by fighting too much. Sometimes the the struggle can be won with strategic surrender.

    Lyn-thanks for your kind words, I hope reading this blog will continue to be time well spent.

    Anonymous-it is tragic that it takes up for American intervention to get us to reassess. I always hope that my healthy friends and family might somehow benefit from my example. Thanks for your extremely kind words.

    Nicole-confronting this disease forces us to deal with a maelstrom of emotion. Inevitably, somebody must bear the brunt of it at some time, either ourselves or somebody else. If it is somebody else, hopefully they are wise enough to realize the source of your harshness. Of course you can add my blog to your blogroll, we are all in this thing together…

    Anonymous-thank you so much for your comment, especially if it is your first on any blog. I hope that for you this is a sign of some level of acceptance, because we can only start to coexist with the beast once we've acknowledged its companionship, however unwanted.

    Connie-I would urge you to set your journey to words. I find it very therapeutic, once on paper, or on the screen, the feelings and experiences somehow loose some of their toxicity.

  23. Centennial-so nice to see you back. I think you're right, that eventually most to develop a certain sense of self knowledge. Dealing with illness speeds up the process. And Mark Twain was a very wise man, if only I could have lived my youth with just one iota of what I've learned since.

    Chris-we all must proceed down the path at our own pace. It's quite likely that you are where you need to be for you, right now. As I say in the essay above, it's more about the journey than the destination.

    Ellie-thanks for your comment. I am humbled to be able to express emotions that so many feel. The barriers we build around ourselves crumble under the stress of chronic illness, and those of us suffering from it can sometimes connect in a very primal way.

    Ruth-thanks for the image of my strumming your heart. I hope you'll forgive me if I hit a sour note every now and then…

    Wheelchairs-I'm glad you appreciated my essay. Thanks for commenting.

    Nixon-thanks so much for the link. It's funny how important athletic shoes have become in our culture. Funny and strange.

    Prairie-thank you

    Michael-thanks for taking the time to comment. The thought that some of what I write here actually has impact, even if small, on other human beings never ceases to astonish me. Good luck to you and your wife, hopefully she will be one of the CCSVI success stories.

  24. You have a true gift of letting people see your perspective. I've read a few of your posts, and though I could never understand what you've gone through, I feel...enlightened nevertheless.

    Your ability to see the positivity in such hard times is beautiful. May we all learn to find peace and purpose in life's struggles.

  25. Replies
    1. Yes, I am still writing, maybe not as frequently as before but still scribbling away…

  26. I was just able to pull up all of your wonderful essays. Stayed up late reading them because I could not stop. First thing this morning I was right back at!

    You are a powerful and profound writer. As someone newly diagnosed I am enormously grateful for your insights.

    Thank you for articulating so much of what I feel. I was particularly struck by "Why Not Me".....I concur. Life happens and I have far more to be grateful for in mine than not.

    I will continue to read your musings and "deep thoughts" (SNL) with deep appreciation. Write On!

  27. I love your last paragraph, my experience has also been that illness has been my spiritual path.
    Thank you!

  28. I LOVE YOUR WORK! When ever I am feeling blue as shit, I read an article. So this week, lots of articles. This week got home from the hospital after a 10 day stint and a diagnosis of SPMS. Ugh. I also realized I can not work fingernail clippers, hands to weak. But, my 11 year old daughter and I found the "as seen on TV" nail grinder, problem solved. (Maybe) we will see. I now blog. You are my inspiration.

  29. Dear Marc - you should know that for a soon 60-years old lady in Oslo, Norway, your writings are among the most helpful things ever! I was diagnosed with PPMS about three years ago, far too late - the progression was already running its own show - but in so many of your posts I reckongnize my owh thoughts and struggles with life, fate and all that. Thank you.