Sunday, June 29, 2014

Me, In Front Of The Camera (Yikes!)

(For those receiving this via email, this post contains a video which can be viewed at the Wheelchair Kamikaze website – click here)

As is evidenced by the Wheelchair Kamikaze videos and photos that are part of this blog, I’m very comfortable behind a camera. In front of a camera, though, not so much. This might seem strange given the fact that I don’t have much of a problem “revealing” myself through my writing, and I’m not exactly a shrinking violet, but I usually react like I just got too close to the tail end of a flatulent moose when viewing images of myself or hearing recordings of my voice. Many so-called primitive cultures believe that capturing a person’s image or voice steals a bit of their soul, and on the off chance that they’re right I’d much rather be the thief than the thieved. You can never have enough soul whether you're talking about things mystical or musical, and anyone who knows me can tell you that I just can’t get enough of that funky stuff. Holla!

Be that as it may, last summer I was contacted by a producer from the website (click here), who wanted to know if he could put together a video for the site featuring me and my blog. As an added incentive, I was told that I’d be interviewed on camera by none other than Dr. Sanjay Gupta, a famous doctor and television personality who makes numerous appearances on CNN, CBS, and other media outlets. Dr. Gupta is also a practicing neurosurgeon, which further piqued the interest of this “atypical” MS patient. Additionally, I was told that Everyday Health wanted the video to include my lovely wife Karen, who deserves as much praise and credit as can possibly be heaped upon her. So, given this ever enticing witch’s brew of enticements, how could I say no?

Shooting the video took two days, or eight months, depending on how you look at it. Late last August – on my birthday, as luck would have it – Karen and I met Dr. Gupta and his video crew in lower Manhattan near Wall Street, where the good Doctor interviewed me as we walked/rolled along the city streets, talking about what it's like to use a power wheelchair in the crowded metropolis. Since time was short, we made plans to finish the video sometime in the next few weeks. My big fat rat bastard of a disease then reared its ugly head when I had a bizarre and totally unexpected reaction to a medication called Acthar Gel, which had me laid up in bed until the end of November (click here). By that time winter had set in and we decided to put off finishing the video until better weather arrived in the spring. Shooting was finally completed in May, and Everyday Health posted the edited video and a much too kind accompanying article on their Internet site a few weeks ago (click here).

Despite the fact that I may have lost a few bits of soul to the production, I think the Everyday Health crew did an exceptional job on the video and the written piece that goes along with it, the combination of which had me blushing for days. I’d like to give my heartfelt thanks to Dr. Sanjay Gupta, producer/writer Nils Kongshaug, and videographer/editor Michael Bush for doing such a bang up job on the entire production. Truly, I am not worthy (but Karen is)…

And so – drumroll, please – here’s Everyday Health’s Wheelchair Kamikaze video…

Sunday, June 22, 2014

Must Watch TV – "When I Walk" Airing Monday, June 23

Last year I wrote about a remarkable MS themed film called When I Walk that was making the rounds of local film festivals. In part funded through a Kickstarter crowdfunding campaign, When I Walk proved to be a tremendous success, winning numerous awards and garnering impressive critical praise (click here and here). Though the documentary saw some nationwide and worldwide distribution, it was screened at only a relative handful of theaters, preventing it from being seen by the widespread viewership it so richly deserves. On Monday night, June 23, When I Walk will finally get its chance to reach the masses here in the United States, with a television debut on the PBS series "POV" (click here). In the New York City metropolitan area, the film will air at 10 PM, please check your local listings for air times in your area. When I Walk will also be available for viewing online from June 24, 2013 to July 23, 2014. (Update: seems that the film will be showing on different days in different cities. Please click on the "POV" link, above, to check when When I Walk will be shown in your local area. I've also learned that many Canadian locales also get PBS, so WK readers in Canada should check their local listings.)

When I Walk is the work of Jason DaSilva, a young filmmaker whose previous films have been featured at film festivals around the world. About nine years ago, at the age of 25, Jason was struck with progressive MS and decided to turn his camera on himself. His documentary When I Walk chronicles the first seven years of his struggle with PPMS in unflinching fashion, showing the effects of the disease warts and all even as it exposes the heart and soul of the man at the center of the storm. When the film opens, Jason is having some trouble walking; by its end he’s using a scooter full-time, his vision is increasingly affected, and the disease is attacking his hands to the extent that he needs help completing the movie. In between, we experience the physical and emotional roller coaster of MS as Jason searches for answers, possible cures, and even miracles. Though one might think this would make for gloomy subject matter, the film is an inspiring testament to Jason’s courage, the power of love, and the enduring nature of the human heart. Even as Jason’s body betrays him, he manages to find his soulmate, a woman special enough to love him despite all of the trepidation and uncertainties that come with MS.

Unlike the usual public face of MS, which typically features MSers climbing mountains or celebrities with MS "dancing with the stars", When I Walk gives us an unvarnished view of the realities of multiple sclerosis, a picture of the disease rarely seen by the public at large. For that alone the film deserves heaps of praise; the fact that When I Walk manages to inspire and illustrates the strength of the human spirit despite never shying away from the uncomfortable facts of life with progressive MS is testament to the artistry of the filmmaker, and makes the film "must watch" material for those both inside and outside of the MS community.

Here’s the When I Walk trailer:

It'd be terrific if Wheelchair Kamikaze readers left their impressions of the film in the comments section of this post…

Monday, June 16, 2014

The Great Pretender

(For those receiving this via email, this post contains a video that can be viewed on the Wheelchair Kamikaze website-click here)

Yes, I'm the great pretender
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…

Thursday, June 5, 2014

Remembering Robert Kennedy

Attorney General Kennedy and Rev. Dr. Martin L...

Image via Wikipedia

(I rarely deviate from the MS/disability theme of this blog, but there are some things that are more important than multiple sclerosis. This essay was first posted five years ago, in 2011. Given the current ruinously cantankerous political climate in the United States of America, I believe the words and deeds of Robert Kennedy are more important than ever. With a few changes, perhaps a word or phrase here or there, the speech Kennedy delivers in the video at the end of this post is as relevant today as it was 46 years ago, and should be taken to heart by those of all stripes in this troubled nation of ours. Black or white, conservative or liberal, rich or poor, red state or blue state, Democrat or Republican, we're all in this thing together. For those who receive this via email, the video can be viewed on the Wheelchair Kamikaze website – click here)

I am a man with few heroes.

It disturbs me to see the word hero tossed around indiscriminately these days, as it belittles the few individuals who truly deserve the honor. Though I respect many people, some deeply, there are only a few whose words and deeds have led me to try – usually with pathetic results – to emulate the examples they set. One such person is Robert F Kennedy, who was felled by an assassin's bullets shortly after midnight on June 5, 1968, 48 years ago today.

Bobby Kennedy was by no means a perfect man, his shortcomings well-documented by numerous tell-all books and our insatiable gossip hungry media. Back then, there was still, for better or worse (I think for better), a separation between the public and private lives of our political figures. Show me almost any celebrated historical leader and I'll show you skeletons in their closet that today would have ended their careers before greatness could have ever been achieved. RFK was a complex individual; intelligent, introspective and headstrong, possessed of powerful ego and at times known to be ruthless in achieving his political goals. But he was also an idealist, a man whose thoughts and the actions driven by them evolved through a life transformed by devastating personal tragedy. After the assassination of his brother, President John F. Kennedy, Robert Kennedy went through a long dark night of the soul, only to emerge with a deep resolution to further devote himself to public service and fight for his deeply held moral convictions against social injustice and for the weak and disenfranchised.

Robert Kennedy started his political career working in the office of the now justifiably defamed Senator Joseph McCarthy, who at the time was in the midst of his vile early 1950s anti-Communist witchhunt which resulted in the destruction of the reputations and lives of dozens of innocent victims. From those ignominious beginnings sprang a career that saw Robert Kennedy champion civil rights, advocate for the poor and marginalized, fight organized crime, and play an instrumental role in pulling the world back from the very brink of nuclear Armageddon during the Cuban Missile Crisis.

After his belated entry into the 1968 presidential race, his campaign to win the Democratic nomination gained increasing momentum, culminating with his triumph in the California primary on June 4, 1968. Minutes after delivering his victory speech at the Ambassador Hotel in Los Angeles, he was shot while attempting to exit the building with his entourage. Though an assassin, Sirhan Sirhan, was named and convicted, controversy still rages over the tragic sequence of events that transpired that night. Robert Kennedy lingered for 26 hours, and died at 1:44 AM on June 6, 1968.

Had Kennedy won the nomination and eventually the presidency, our historical timeline would certainly have been significantly altered, perhaps resulting in a future absent much of the social and political upheaval that was to come. There would have been no violence on the streets of Chicago during the 1968 Democratic convention, no President Nixon, no Watergate scandal, a quicker end to the Vietnam War, and no massacre at Kent State. Without these traumas inflicted on the collective psyche of America one can only imagine that the arc of history might very well have been much more benign than the reality that ultimately came to be. The promise represented by Robert Kennedy cannot be overstated, nor can the tragedy of his loss.

Perhaps the best way to illustrate the merits of Sen. Kennedy is to let the man speak for himself. On April 4, 1968, just two months before his own assassination, Dr. Martin Luther King Jr. was gunned down in Memphis, Tennessee. On the evening of the King tragedy, Bobby Kennedy was scheduled to address an inner-city crowd in the heart of Indianapolis, Indiana. Knowing that his audience would be largely black and likely unaware of Dr. King's assassination, which had occurred just a short time before, Kennedy had little time to formulate his thoughts much less write a polished speech. Without the help of aides or speechwriters, he jotted a few notes to himself during the ride to the rally, and then delivered an eloquent and profoundly emotional address. No teleprompters, no calculations of political consequences, no prepared text, just intelligent and respectful words delivered from the heart and soul. He didn't speak down to his audience but addressed them as peers, sharing with them the anguish of his too having suffered the murder of a loved one. As a direct result of this speech, Indianapolis was one of the few American cities spared vicious riots in the wake of Dr. King's assassination.

Here is the speech Robert Kennedy delivered that night, from the back of a flatbed truck…

Rest in peace, Bobby Kennedy.

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