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 which 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’ve got 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 multiple sclerosis can be a buzz
saw intent on breaking that bond. As the disease progresses 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
feeds 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 I quickly developed a smart and scathing wit
with which to defend myself from their juvenile barbs. Hurtful comments made by
adults, though, often 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 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 fear, anguish, and
disgust brought on by my illness lays that 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 you said it, it stinks on ice… Ha!
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