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My Body, my Self

My Body, my Self

In Mel Brooks’ 1981 comedy “The History of the World, Part 1”, a scene set during the French Revolution features a member of the aristocracy rushing to tell King Louis XVI, “It is said that the people are revolting!” His Majesty quickly replies, “You said it, they stink on ice”.

The exchange is an amusing play on words that succinctly and humorously sums up the crux of the social upheaval engulfing France at the end of the 18th century. Substitute me for the King of France and the words “your body” for “the people”, and you’ll get a pretty good idea of what’s going on inside me, both physically and mentally, courtesy my creeping paralysis. My body is in full revolt, increasingly refusing to obey my commands, and I find the situation along with my withering body itself completely repellent. My body is revolting, and it stinks on ice (not literally, I hope, for the sake of those who get close enough to smell me).The mind-body connection is a strong one, but progressive multiple sclerosis can be a buzz saw intent on breaking that bond. As the disease advances it forces one to separate body from mind, as the “self” becomes more and more divorced from the body that serves as its vessel. Despite lofty ideals about looking beyond the physical to the person within, our sense of self can’t help but be intricately entwined with our physical state; our identities, for better or worse, are in so many ways shaped by our outward appearance, a dynamic that seems ever on the increase in a culture obsessed with beauty. We live in a society that idolizes physical beauty to the point of absurdity, elevating the utterly talentless but extraordinarily beautiful to fame and fortune and fueling in many an obsession with physical perfection. This incessant quest for beauty has in turn birthed entire industries devoted to indulging this ravenous appetite for youthful good looks which only further feed our insatiable societal lust for flawless appearance. Billions of dollars are made catering to a population infatuated by comeliness, with cosmetics, fad diets, exercise crazes, and plastic surgery all exploding to the sound of cash registers ringing and money changing hands.

Though we pay lip service to the idea that beauty is only skin deep, study after study has shown that in modern Western society those perceived as physically attractive have a quantifiable advantage over those not similarly blessed. There are, of course, exceptions to the rule, and beauty is by no means a sure ticket to happiness. Indeed, for some it can become a curse – think Marilyn Monroe – but our popular culture covertly and overtly continuously pounds home the message that the spoils of life most often go to those deemed gloriously pretty or handsome. I’m not sure that anyone can be immune to this pervasive zeitgeist, and I certainly was no exception back in my healthy days, although my relationship with my body even pre-MS had a long history of discord.

Growing up I was as skinny as they come. I’m not talking merely thin, I’m talking Boney Maroney, stick figure, almost comically scrawny. In addition to earning the nickname “Bones”, until I was 15 or so I was also quite short, and as a skinny little pipsqueak I was often subject to teasing not only by other kids but sometimes by adults as well. While it’s considered bad manners in grown-up circles to talk about a heavy person’s weight, it seems no such taboo exists when it comes to the extremely thin, regardless of their age. Being teased by other kids was bad enough, but in response I quickly developed a smart and scathing wit with which to defend myself from their juvenile barbs. Hurtful comments made by adults, though, always struck home hard, and I can still vividly remember some of the most boorish comments directed my way by adults who should have known better, the combined effects of which spawned massive insecurities that persist to this day.

A sudden growth spurt when I was about 15 years old took care of the pipsqueak part of my problem, but I remained superduper skinny for years to come. When I graduated college I was 6 feet tall and weighed in at a whopping 120 pounds soaking wet. Fortunately, sitting atop that emaciated frame was a face that was kind of cute, and much to my delight and amazement I discovered that there were women who actually like skinny men. I naturally gravitated towards artsy social circles and wound up the lead singer of a punk rock band, a role in which thin was most definitely in. In the underground music scene in the 1980s there was more than a touch of heroin addict chic, and I had the decided advantage of being as thin as a junkie without actually having to take drugs. I’d managed to find a social scene in which my being the skinniest guy around was actually an advantage. Go figure.

My body finally filled out in my late 20s, but I always remained on the thin side. Nobody was ever going to mistake me for Adonis. Although I was considered attractive, and was sometimes even called handsome, the insecurities that first took root when I was a skinny little nebbish lived on and I fought hard to overcome a shyness that at times bordered on social anxiety. I’ve been told that some found me aloof or even standoffish, but in reality I more often than not was quaking in my boots. That scrawny little 10-year-old was never far from the surface, a mind-body connection that persisted far into adulthood even though it no longer reflected my physical reality.

Now an entirely different kind of mind-body connection, or, more correctly, a mind-body disconnection plagues me. Just around the time that I had become comfortable in my own skin – thank you, decades of psychotherapy – a little problem called multiple sclerosis reared its ugly head. While walking my pooch along the Hudson 11 ½ years ago, I developed a slight limp in my right leg. All too soon that limp was joined by a weakening right arm, and whatever dastardly bastard was causing this distress refused to release its grip. Fast forward a decade plus and this beastly disease has just about fully consumed my right side and is gluttonously munching away at my left. My mind reels in horror at the damage that has already been done and can barely stand to contemplate that which may lie just beyond the horizon. But the me that existed before my illness struck still resides within, inevitably changed by the experience but ever yet struggling to maintain itself.

In a situation surreal but all too real, I find myself (and my self) trapped in a body that increasingly not only refuses to obey my wishes but seems to have a mind of its own. I sometimes put my disease to the test, concentrating intently, face contorted with effort, commanding my right ankle to flex, but much to my overwhelming chagrin and frustration, nothing ever happens. Absolutely nothing. Many nights, though, just about the time when I’m ready to go to sleep, my entire right leg will shudder and quake in muscle spasms beyond my control, violent enough to shake the bed frame, the tremors coming in waves every 30 seconds or so for hours on end despite the pharmaceutical cocktail meant to quell them. All the while, inside, buried deep within the emotional maelstrom brought on by my illness, lays a big kernel of the old me, observing it all in utter disbelief.

Since the onset of my disease, the divide between my essence and the body that contains it has grown from a slight fissure into a great chasm. I’ll occasionally struggle from my wheelchair to stand in front of a mirror, trying to strike a pose that suggests some semblance of normalcy, imagining that if someone were to glimpse me at that precise moment they might not guess I was so afflicted. But then I see in my reflection that my right arm has withered, the fingers on my emaciated right hand curl unnaturally inward, and my right wrist and elbow stay unbent only by my precariously lodging them against the side of my body. In shorts my legs reveal themselves to be sticks, as if they remembered who they were back in my skinny youth and decided to reprise the role. My once lean stomach has become a bulbous belly, courtesy years of sitting in a wheelchair. This is not the me that I hold in my mind’s eye, and yet this is the reality of the body I now possess, a body that will become only more and more unfamiliar with time barring some incredible medical intervention.

This decrepit circumstance has forced me to break the mind-body connection that we are so conditioned to accept as reality. Though I struggled to embrace my physical self in my younger days, I must reject the physical decay that now besets me, as for sure this defective mass of flesh and bone does not define me. My mind remains sharp, maybe too sharp, and my sense of self is more pronounced now than ever, albeit in an increasingly disembodied state. I don’t know if consciousness survives our ultimate physical demise, but I do know that the essence of who I am is increasingly independent of the physical form that maintains it.

In a strange paradox, I have become more sure of the person I am these days than I ever was back when my body was whole. I’m privy to insights I likely never would have attained if not for my unfortunate situation. It’s a strange life, this existence within an existence, but it is life nonetheless, not one I ever would have chosen but one in which holds within it not only sorrow and frustration but also still moments of contentment and sometimes even joy. Along with my sense of self those two most vital elements of life, joy and contentment, have by necessity undergone their own bits of revision, reshaped and reimagined by a me that more and more severs the connection between body and mind.

My body is revolting, and yes, you said it, it stinks on ice… Ha!

This article was originally published on Marc’s website on 10/17/14 and is being featured on MultipleSclerosis.net with his permission.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Marc Stecker-Wheelchair Kamikaze author
    4 years ago

    Thanks for the responses, folks. Even though MS affects each of us differently, those of us who have been hit hard by the disease all share one thing in common: frustration. I agree that it is exasperating that the typical depiction of MS in the media is someone with the disease climbing mountains are running marathons. We know that that’s simply not the truth, at least for many, many people with the disease.

    Sharing our stories is a big help, as the courage and perseverance displayed by my fellow MS patients plays a large part in keeping me going. The public at large just can’t understand that simply getting out of bed some days can take an incredible amount of fortitude when your body not only refuses to cooperate but seems to be conspiring against you.

    Hang tough, comrades, and keep fighting the good fight. One day at a time, one hour at a time, one minute at a time, one second at a time…

  • Joan
    4 years ago

    Thanks for your story, Marc. My beautiful daughter, Rachel,(you can see her on her FB page: Rachel Quilter), after 18 years (maybe more)of MS symptoms, is now bedridden. She has been legally blind for years, and recently, has difficulty speaking. Her cognitive faculties are still good with a memory like an elephant. She says, from time to time, that her reality is hell. Then, when her mood is better, she talks of a time when she’ll be better and her future plans. My son is her legal guardian, and he and his wife coordinate the several caregivers (family, friends, and paid caregivers) who never last for long. At age 38, she talks of dictating her story to her sister who has just moved very near her. We all try to live according to my late aunt’s motto: Take each day as it comes.

  • Dianna lyn
    4 years ago

    Great writing Marc,
    I had just visited a local friend that has MS, like me! WOW! He is an amazing person and I was really blessed for the opportunity to meet him. I was diagnosed in 2007, no, I am not in a wheelchair,but when I am home and no one is looking, I use my cane, because my right side is going out on me. My right hip is painful when I walk and the cane helps me get around. My right hand started curling up recently, so I exercise it first thing in the morning.My neck is stiff as a board, but I still manage to walk with all these symptoms. I feel like, if I give up then, I will never walk again, so I fight hard, really hard! Every single day it’s a struggle, a struggle I didn’t want my own children or grandchildren to see, so I moved away from them to fight this MS thing, but I am glad I did. I still travel to see them, don’t get me wrong here, I love my kids and grandkids, but when my grandbaby seen me shake uncontrollably, he cried. And I don’t want my children or grandkids to cry. I get really upset when I see magazines that show MS people, like me, ice-skating, bike riding..etc..because, I used to be that active, now, truth is, I fall.But, now I am a broken arrow and ready to be fixed, and Lord willing he is still carrying me, for now. Thank you Marc for your post and we still have our sharp minds, and it shows in your incredible writing, again thank you..

  • aok802
    4 years ago

    Thank you so much for all of your stories. I was diagnosed over 20 yrs ago, but have only needed a power chair for the last few years. I have virtually 100% of my mental capacities (except of course when the fatigue gets really bad). I still have 2 kids in high school and try to attend all of their sports competitions and school events. For the last few years, I have bounced over more soccer fields than I can recall. I drive my van from my chair. I run errands and take myself to all my doctor visits. I also see a psychologist who specializes in back injury and MS patients. (She is the only psychiatrist who works in this specialty within a 100 mile radius and I know so she is truly a gift from God!).

    When I visited her last week I commented on how I never see anyone else in a chair who drives, runs errands, attends these soccer games, etc. I told her that I know I’m not the only one with MS in a chair around here (although virtually everyone in the support group I attend is still walking). I asked her where all of these other people in chairs could be. She has so much experience, knowledge, and insight and after thinking about it for a minute, she said that usually the patients that she knows who are advanced enough to need a chair usually have quite a bit of cognitive decline. She often comments on how lucky I am that I still have my faculties. I am a highly educated person and had a great job that I really loved and was able to figure out how to work from my chair and even telecommute occasionally.

    As my body continued to revolt, I realized I just could no longer get out of bed every morning and function. Some days, it can take me half the day to really start functioning. So with great sadness, I took a disability retirement last year. It’s really frustrating because mentally, I can still perform my job and I was good at it. My body will just not physically put up with a routine.

    My point is that I have to get past that frustration and get past the frustration that there is no one around that I know of with MS in a chair that truly understands all the issues that are involved in being in a chair while trying to run errands, attend kids events, etc. Reading your stories make me feel that you get it. You’ve got your mind yet your body continually revolts. Someone like you understands when I say I feel like telling people that I have ALS (hence no cognitive involvement, but a declining body) yet it’s progressing very, very slowly. Sometimes when people tell me about someone they know who is doing okay managing their MS so they are clueless as to why my body is wasting away in a chair, I just want to tell them my life feels more like it is afflicted with that very slowly advancing ALS in a desperate attempt that they just might think about how really awful my situation is. Then I think about those that actually have ALS and how horrific that must be knowing your body will completely shut down and you will die in possibly just a few short years.

    I guess we all just have to persevere and wake up every morning and accomplish what we can. Just do our best to not dwell on the reality of the present and the scary uncertainty of the future. I really do though appreciate your stories and want to thank you again for sharing them. Theyare imnspirational and help tremendously!

    Alison

  • Dianna lyn
    4 years ago

    Alison, you and Marc are truly an inspiration to us all, thank you for sharing..

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