Just laughin' and gay like a clown
I seem to be what I'm not, you see
I'm wearing my heart like a crown
– “The Great Pretender”, the Platters, 1955
It’s strange when a phrase or quote that you’ve long known takes on new meaning due to changed circumstances. Such is the case for me with the lyrics of “The Great Pretender”, a song made famous by the doo-wop/R&B group The Platters in 1955. The tune has long been a part of the playlist in my brain. As the song goes, “yes, I’m the great pretender…”, only now I’m pretending in ways most likely never imagined by the lyricist.
A few weeks ago I had a late lunch with a fellow MSer in a famous restaurant nestled on the outskirts of Central Park called Tavern on the Green. We ate underneath an umbrella in the outdoor patio portion of the newly refurbished eatery, an idyllic spot on a glorious spring afternoon. My friend has a sharp wit and is wickedly entertaining, and she and I whiled away several hours lost in conversation and good food. Our chat ranged far and wide, but, as might be expected from two people dealing with multiple sclerosis, the topic of our shared foe came up at regular intervals, not in any maudlin way but more as the subject of information exchange and the occasional sarcastic verbal jab.
While we ate, me in my wheelchair and my friend with her cane resting beside her, the rest of the world buzzed around us, for the most part as oblivious to us as we were to it. Insulated in our own little bubble, we conjured an atmosphere of normalcy despite our abnormal physical situations, just a couple of gimps jabbering away, all the fleet footed and nimble fingered be damned. After lingering for quite a while, we finally finished our meal, paid the tab, and wheeled (me) and limped (her) our way out of the establishment, where we’d pleasantly spent a very rich few hours.
Just a moment or two after exiting the restaurant, though, my friend suddenly burst into tears.
“What’s wrong?” I asked, naturally alarmed.
“Look!” she sobbed, pointing at the broad inner roadway that circles the circumference of the park, which had become a blur of joggers and bicyclists. “I can’t do that anymore, and I want to.”
Our bubble had been burst and harsh reality rushed in to fill the vacuum. Crap. I felt a black hole tearing at the center of my soul. I reached my one good but weakened hand out to hold hers and hesitantly stammered, “I know… I know." Hackneyed platitudes dressed up as words of wisdom just weren’t going to cut it. This great pretender could do nothing more than share the hurt.
Though I like to think that I have successfully mastered the mantle of noble warrior, steadfastly staring into the eyes of the beast that is my creeping paralysis without any cloak of self-delusion, the plain truth is that in the years since my diagnosis I’ve become well practiced at the art of illusion, wielding psychic shields to protect myself from the sharper and sharper barbs of my increasingly dire situation. I guess this is only natural, a survival mechanism hardwired into our brains to help us cope with even the most dreadful of circumstances. Denial may be one word for it, but I think it’s more a subconscious reshaping of reality than a refusal to see things as they are, a sculpting of perception to create a much-needed psychological zone of comfort and safety. Of course, reality is always in the eye of the beholder, cross your peepers hard enough and even the most cockeyed of situations can appear straight as a desert highway.
Safe in the cocoon of my apartment, my increasingly dysfunctional existence has indeed become “normal”, the countless allowances made to the ravages of the disease rendered commonplace over time. Living with progressive MS is an exercise in constant adaptation; with incremental losses come a never-ending series of incremental workarounds. The disease has slowly left me with a right side that is completely on the fritz and a left that is continually weakening, transforming once mundane tasks into exercises in ingenuity and tenacity.
Sheltered within the cozy confines of my sanctuary here on the 18th floor of my high-rise building, all of the crazy workarounds and elaborate but clumsily choreographed routines that get me through the day seem almost ordinary. Within these walls my rather bizarre life has become the norm, allowing me the luxury of just being me, warts and all, negating any need for pretending. Sure, there are times throughout even days spent entirely alone at home when I’m hit with “holy shit, I’m a cripple” moments, instants awash in incredulity, but by and large, left to my own devices, I can relax and be myself in the self-contained topsy-turvy MS riddled world of home.
The Great Pretender springs into action once I venture out into the world, where reminders of my mangled reality are everywhere. It starts the moment I leave my apartment. Waiting for the elevator, I sit in my chair hoping beyond hope that when the doors open the car will be empty, saving me the spectacle of watching my fellow building dwellers scramble out of the way of my mechanical monster, my oh too cheerful apologies mixing with their forced graciousness in a perfect illustration of the human capacity for polite bullshit. Once out of the elevator I watch my instantly effervescent doorman rush to open the building’s doors wide for me.
“How are you today Mr. Stecker?” he asks just a little too enthusiastically.
“Better than those goddamned Mets,” I respond, and then we both force a laugh (for those blessedly unacquainted with The Mets, they are New York’s notoriously pathetic baseball team). In truth I appreciate these attempts at perfunctory pleasantries, while at the same time resenting the fact that I require added attention. And then it’s out into the bustling metropolis, where The Great Pretender kicks into high gear.
I love the city, I love being out in the city, but Gotham’s very nearness and dearness to my heart exposes that fragile little organ to the slings and arrows of my outrageous misfortune. All around me there are people doing wondrous things, walking and jogging and climbing stairs, driving and texting and holding hands, all with effortless grace and dexterity. They’ve no idea how lucky they are, just as I didn’t when I was so incredibly fortunate to be one of them.
Ass firmly planted in chair, I take on various roles as I roll through the town: observer, photographer, crazy Wheelchair Kamikaze, speeding through the streets so as not to let envy catch up and turn me green as a Martian. Shields up I deflect whirlwinds of emotion, psychological tornadoes shunted aside by the storm shelter of the Great Pretender. I honestly enjoy careening around the sidewalks of New York, though as my “good” arm and hand continue to weaken even that pleasure is becoming blunted. Still, there’s plenty to occupy the mind while at the controls – don’t hit that pothole, sure hope that pigeon is quick to the wing, watch out for the precocious scooter kid!
Once I arrive at my destination, other concerns take hold as there’s less to distract me from the facts of my broken down state. If I’m out for a jaunt by myself, say to the park or to the river, I mindfully try to soak up the scene and not let my sense of otherness overwhelm and ruin the moment, not always easy but doable while alone and left to my own devices. Things change in the company of healthy friends or family, when I somehow feel responsible for keeping them at ease with the situation, almost automatically conjuring a sense of nonchalant joviality that belies the gravity of my predicament. The Great Pretender wears thin armor and a welcoming smile.
What a great attitude, others sometimes marvel, even as I sit secretly coveting not only their hale bodies but also the problems that occupy their hearts and minds. Is that a horrible admission, that I’m jealous of the very same issues that often had me tied up in knots back in my healthy days? Problems that could be solved either through action, a change of mindset, or simply the passage of time? This implacable illness has no such solutions, thus far defying every effort to even just slow it down. Barring some incredible medical breakthrough, these are wounds that time won’t heal but in fact will only make worse, a truth I hardly want to admit to myself much less discuss with anyone else, other than the closest of the close.
As my disease progresses, maintaining psychic equilibrium in social settings requires more and more conscious effort. It’s hard to get lost in dinner conversation when your increasingly gimpy hand has trouble manipulating a fork. Such social outings are double-edged swords; they offer much-needed distraction and social interaction while at the same time putting a focus on just how much I’ve lost to this slowly exploding atomic bomb. My efforts at illusion aim not only to comfort others but myself as well. The approximation of “situation normal” that The Great Pretender endeavors to maintain is a way of breathing life into the me that used to be, the embers of which I’m afraid are slowly being doused. It’s good therapy to get lost in the occasional game of make-believe, but gosh it can be exhausting when the illusion is so easily shattered, when all that used to be taken for granted sits balanced on a razor’s edge, when looking down reveals an emaciated right hand curled into a claw. A physical and psychological juggling act of increasing complexity, socializing with friends has its rewards but also it's price. I usually find myself totally spent after such activities, needing days to recharge.
When I’m out with fellow MSers, it’s a somewhat different story. Regardless of the stage of their disease we share a common burden, and that sharing helps to lessen the load. Members of an exclusive club that none of us wanted to join, we speak a language that outsiders would at times be hard-pressed to understand. Even out and about in the great big land of the healthy a couple of gimps can carve out a world within a world. It can be exhilarating to talk about the ugliness of MS with someone else who just gets it, no explanations necessary. Speaking of things that to others might seem unspeakable can be a tremendous relief, a chance to purge and breathe deep. This sense of sharing creates its own temporary normalcy, and yet, as was the case with my friend as we left Tavern on the Green, the outside world has a way of shattering even collective illusions.
In a sense we are all The Great Pretender, revealing different sides of ourselves to different people, wearing different faces in different situations. In part, we choose our friends and lovers based not only on who they are but on the person they allow us to be. Chronic progressive illness digs deep, throwing a mass of new variables into the equation, increasing exponentially the complexity of the elaborate social dances in which we all engage. As the disease takes hold fundamental changes take place, not only physical but mental, changes visible and invisible that can be so traumatic that they shake our foundational notions of self. Protectively and instinctively I insulate body and mind, creating pockets in which my new decidedly not normal becomes normal, but the world outside still beckons, the company of others still calls. Though beyond the comfort zone lays the potential for peril, I venture forth with a spirit – at once both real and contrived – intended to bolster myself as much if not more than others.
And so yes, I’m The Great Pretender…