Transabled

An able-bodied friend and I recently discussed the swirl of issues surrounding transgender people, spurred by the President’s sudden tweeted edict banning transgender volunteers from serving in the military. My friend expressed mixed thoughts on these matters, most of them based on the fact he just couldn’t identify with a person feeling they were somehow born into a body of the wrong sex. I replied that I too couldn’t entirely relate to the emotional state and cultural pain experienced by transgender folks, but my feelings should have no bearing on issues of fairness and equality. If all people are indeed created equal, any person's standing as an equal should not rely on my ability to fully grasp the intricacies of their circumstances.

As those thoughts turned into words and left my lips, the realization hit that in many respects I can identify with at least some of the feelings I expect transgender people experience. I’m in no way equating my own situation with theirs, but thanks to Creeping Paralysis the inner me is now almost entirely divorced from the body in which it exists. I’m not transgender, but I am transabled.

My concept of “me” is still that of the wiry six-footer that I used to be, the mannish boy who reveled in meandering strolls through the city, long-distance swims, a vibrant social life, and a full tapestry of sensual and tactile delights. The self I hold dear bears no relation to the embodiment of decrepitude that confronts me whenever I glance down and take a gander at the frame that sits in my wheelchair. The image staring back at me when I muster up the courage to roll up to a full-length mirror and take a peek is a complete stranger, at least from the neck down. With its bloated belly and ravaged limbs, that thing in the chair is most emphatically not the me that dwells inside of it. The old me lives on, cocooned in my heart and soul, trapped within a penitentiary of increasingly useless flesh and bone.

Though I try my best to quiet the frenzied feelings engendered by this gaping disconnect between body and spirit, at times there is simply no denying the emotional tempest raging within. Confusion, anguish, sadness, a gnawing yearning for what used to be – negative energies all, especially when directed inward. And though I try my best to silence or at least contain them, these destructive emotions seek out seams and points of weakness through which to burst, like grasping fingers of flame blasting through an apartment building window, threatening a conflagration that will take down the entire edifice. Thus far my attempts at emotional alchemy, seeking to turn negative energy into positive, have helped neutralize the threat, but the potential for self-immolation always lurks within.

As a transabled person, I often find myself an alien on my own planet, a victim of a variety of discriminations. Outside the cozy confines of my home, there are bathrooms I can’t use, restaurants and shops that apparently don’t want me as a customer, and passersby to whom I appear to be invisible. Indeed, maybe even something worse than invisible, a threat, a reminder of the ephemeral nature of their own sense of normalcy, a not-so-subtle hint that the supposedly solid foundations of their lives are in fact made of nothing more than gossamer.

The New Testament warns us to judge not, lest ye be judged. As members of a society increasingly riven by social and political divides – largely manufactured by would be puppet masters who seek to gain wealth and power by exploiting the very fissures they have created – it should be contingent upon every individual to live those words as a matter of personal and national survival. It’s far past time to reject outright the prefabricated outrage bombarding us and not fall prey to manipulators who have nobody’s good at heart but their own. We are all in this together, black or white, gay or straight, abled or transabled. If we allow the cracks in our society to further widen, we may all too soon find out what lies at the bottom of the abyss.

To my fellow transabled people I can only offer the same advice that I try to follow myself; make every effort to channel the despair and outrage you feel over being trapped in an increasingly unrecognizable body into some sort of positive force. As the great Johnny Lydon stated, anger is an energy. For your sake and the sake of your transabled brethren, make every effort to direct that energy outward, to vent it in some sort of constructive way if only to not let it combust within you. Cry out against a multiple sclerosis status quo that has made treating but not curing somehow acceptable, confront a medical industry that obscenely sees us first not as patients but as consumers, and offer comfort and understanding to those similarly afflicted.

To the transgender community, I tender my support, as somebody who is now experiencing the turmoil of being transabled. Although we may not live in the same house, I believe we might reside in the same neighborhood. I didn’t choose my circumstances and neither did you. Stay strong.

Celebration-Elizabeth Jameson
Created from MRA image of my brain.

My dear friend Elizabeth Jameson (click here), a disabled person who is far more comfortable with her imperfect body than I am with mine, recently gave the below Tedx talk. Her words and deeds perfectly illustrate the power of directing potentially negative energy outward, thereby forcing it into becoming something positive. Elizabeth’s MS journey found her turned into an accidental artist, transforming MRI images into thought-provoking pieces of fine art. My brain had the honor of being one of her subjects, and the prints she created out of my MRIs reveal that I have a couple of dancers jitterbugging away inside my skull. Thanks to Elizabeth, images of my brain have appeared on the covers of medical journals (click here) and textbooks (click here). Though MS has now rendered her quadriplegic, Elizabeth’s radiant spirit and message of everlasting hope come through loud and clear in this riveting and important talk. Enjoy…

(For those receiving this via email, you can view this video on the Wheelchair Kamikaze website – click here)

New Year's Eve Through MS Eyes (repost)

(This essay was first posted about one year ago. Guess this makes it a golden not so oldie, but it's timely and the sentiments expressed will hold true as long as MS remains my unwanted life partner…)

Back in in the days before I got jumped by MS I always loved New Year’s Eve. While many of my fellow habitual night crawlers derided the night’s festivities as “amateur’s hour”, a time when those less accustomed to nocturnal hijinks were apt to get sloppy and make fools of themselves, I embraced the ringing in of the new year con mucho gusto. Never content with just one party for the duration of the night, my friends and I would go on a kind of New Year’s Eve tour, hitting four or five shindigs and nightclubs before heading home well after dawn on January 1. The sentimentality of the holiday, with its tacit promises of sins forgiven and futures bright with hope held me in its thrall, for though I seemed to live in a state of perpetual neurotic dissatisfaction, I also brimmed with expectations that bigger and brighter days were waiting just over the horizon. New Year’s Eve was the one night a year that this heady brew of emotions and expectations were codified into celebration, to be shared with friends and strangers alike.

I suppose my fondness for the holiday has its roots in my early childhood. My mom and dad divorced when I was three, and for several years after the split my mom and I lived with my grandmother and my unmarried aunt. On New Year’s Eve my young, single mom – who herself loved the nightlife – would head out with her friends into the NYC of the swinging 60s, and my grandmother, aunt, and I would watch Guy Lombardo and his Royal Canadians playing old timey big band hits for the well-heeled crowd at the Waldorf Astoria Hotel, broadcast live to our ragged black and white console TV. We didn’t have much money and lived in a building in the Bronx that was closer to a tenement than a high-rise, but our lack of means did nothing to diminish the excitement and expectations of the evening.

Though I was maybe only four or five years old, on New Year’s Eve I was allowed to stay up till midnight to take part in a family tradition that stretched back decades. We didn’t have any fancy noisemakers or horns, but at the stroke of midnight, as confetti and balloons floated down on the well to do at the Waldorf and Guy Lombardo’s boys played “Auld Lang Syne”, my grandmother, aunt, and I grabbed sturdy but well-worn metal pots and pans, and, using big spoons as drumsticks, burst into the hallway of our apartment building, banging with joyous intensity on those old, scarred cooking implements, creating a raucous racket and shouting at the top of our lungs “Happy New Year’s!” Most of the other residents of the building joined us in creating a jubilant and low rent but somehow defiant cacophony, delirious and intoxicating stuff for the very young me. I daresay that for those few moments we had a lot more fun than the swells at the Waldorf.

When I grew older, as a young adult I fully embraced the revelry of the holiday. I had quite a few memorable New Year’s Eves in my late teens through my mid 20s, from seeing the new wave band The Waitresses playing a show at 5 AM at the famous Peppermint Lounge to bumming cigarettes from a then barely known Howie Mandel at an MTV “after party” that rollicked on and on as if it might never end. I recall with great fondness stumbling out of a nightclub with a group of deliriously intoxicated friends and madly howling at the moon as the last seconds ticked away on one long ago year. As I transitioned into full adulthood, mixed in with raucous annual celebrations were the occasional intimate, more romantic New Year’s get-togethers with lovers and close friends. No matter the circumstances, though, the night never passed without champagne and good cheer, and always kindled within me expectations of bigger and better things to come.

Now, nearly 13 years since I was diagnosed with Primary Progressive MS, the night carries with it a much more complex and troublesome mix of emotions. For the first several years after my creeping paralysis struck, while I was still relatively able bodied, my wife and I would host New Year’s Eve parties, more sedate than my revelries of the past but good times nonetheless. Now, with my body increasingly compromised and my stamina waning, even a small gathering of friends can prove taxing. This New Year’s it was just my wife and me watching celebrations from around the world beamed into our living room in high definition on our big-screen TV, images so crisp and detailed it seemed as though I could step right into them. That is, if I could step.

Despite my best efforts to stay fixed in the moment, I soon found it impossible to watch millions of people celebrating without enviously contrasting their situation with my own. With nary a thought given to their tremendous good fortune at simply having limbs and senses intact, the televised multitudes danced and sang, drank and strutted, laughed and hugged and mingled and voiced exuberant expectations about a future brimming with possibilities. Lubricated by flowing booze and the magic of the night, all could convince themselves that the coming days held good fortune that would far eclipse those which now belonged to history.

For the healthy masses, New Year’s Eve encapsulates the reality that the future is but a blank canvas, the images to be painted on it not predetermined but subject to the will of each individual. All but the most intransigent of difficulties will give way to effort, ingenuity, and discipline. Reality is but a construct of the human mind and the emotions it creates, and as such can be born anew once the self-defeating habits of the past are no longer allowed to dictate actions in the present. Not that these kinds of changes are easy, but with sound body and mind anything – anything – is possible. Sadly, it took my getting sick for me to fully understand this, but there is no greater truth.

And there I sat in a wheelchair – a wheelchair, goddamnit – trying my best to not begrudge the healthy, to vicariously share in at least some of the delirium, to laugh along with them and not let the sneaky tears that kept making their way to the corners of my eyes expose the turmoil that roiled within. There is indeed a reason they call progressive disease progressive. Physically, this last year has been a rough one, with old symptoms getting noticeably worse and new ones breaking the surface. Activities that could be accomplished with relative ease just a year ago are now at times tortuously difficult, and some of those that had been difficult have become damn near impossible. And by activities I don’t mean anything as devilishly complicated as walking or tying a shoe, but rather firmly gripping a fork, or struggling into a sweater, or on bad days, even just staying out of bed for more than four or five hours at a time. My strange and thus far indecipherable mix of endocrine dysfunctions, creeping paralysis, and hideously painful deteriorating joints (courtesy avascular necrosis, a very rare side effect of the intravenous steroids once used to try to beat back the creeping paralysis) has become more intractable than ever, defying all efforts, mainstream and alternative alike, to slow things down.

Unlike those healthy New Year’s Eve revelers on TV, no amount of willpower or change of habits will arrest this bitter physical decline. I continue to fight my disease on all fronts, employing a dizzying array of supplements and medicines to lessen the impact of some symptoms, and undergoing treatments both holistic and traditional at which my condition seems simply to sneer. Though for the most part my spirit stays strong, in the face of this insidious physical onslaught and its accompanying indignities I find it impossible to not at times give way to the weight of it all, having my breath taken away daily by the shocking realization that this is no dream that I can wake from, but instead a concrete reality in which I am being forced to watch myself slowly wither away. My mantra of “staying in the moment” does still help to keep me grounded, but there are also times when the moment just sucks, no two ways about it. Though I can and do fantasize about a future free from illness, my utter conviction to stare this bastard straight in the eyes lands such fantasies well into the realm of the far-fetched, right there alongside my old dreams of becoming the next Mick Jagger or Philip Roth.

New Year’s Eve is a time to look back and project forward, and for the healthy this shedding of the old and embracing of the new can be cathartic, if even just for a few hours. This New Year’s brought me no such respite, though, as a look back illuminated the losses suffered these past 12 months, and peering too deep into the future can be perilous, a glimpse at the dark at the end of the tunnel, a glance at an unthinkable void.

Yet I am not without hope. I keep myself immersed in the latest research and MS news, and though much of it is, quite frankly, garbage, there are approaches that do show promise. Perhaps I am delusional, but even through this morass of illness and increasing disability my resolve to not back down sometimes bends but doesn’t break, even as I acknowledge that merely stabilizing my disease state is at this point quite a longshot. But I know for a fact that sometimes longshots do come in. After all, I’m a guy who once won $15,000 in the Florida lottery, so I’m proof positive that you’ve got to be in it to win it.

And even as I sat there watching the partiers on TV, wrestling with my complicated and disconcerting mass of emotions, when the clock struck midnight I chugged some champagne and kissed my wife, while my inner five-year-old banged on pots and pans and screamed at the top of his lungs, “Happy New Year’s!”…