15 Years a Progressive MSer

You think back and it seems like a million years ago, or yesterday. The first Sunday of March 2003, an unusually cold day for that time of year. Despite the winter chill, you decide to take your beloved Labrador Retriever, Stella, for a long walk along the Hudson. After strolling about 2 miles on the paved path running next to the river, you turn homeward. You don’t return the same way you came but instead choose to take the city streets back to your wife, waiting in your apartment.

On the way home, you slowly notice that your right knee is buckling backward, causing a peculiar limp. It’s not painful as if with a sprain or bruise, but instead, a weird hitch that seems caused by weakness within the knee itself. As you walk further the limp becomes more pronounced, and the inside of your head starts feeling kind of fuzzy. It’s all very strange and unsettling. You know in your gut this isn't normal, that something fundamental has changed.

About two months later, after a disconcerting blur of doctor’s appointments and medical tests, you’re given a preliminary diagnosis of multiple sclerosis. It’s one week before your first wedding anniversary. You’re sad and disoriented and angry and frightened, very frightened. Though you’re still mostly ignorant about the disease itself, you instinctively know you've reached an unhappy line of demarcation. There will now be a time before the limp and after. Little do you suspect how stark a marker this will become, a deep impenetrable moat separating two entirely different lives, both lived in one lifetime.

Now, 15 years later, your old healthy life is receding faster and faster into the haze, like a dream remembered crisply upon awakening but lost to the ether by noon. After the limp appeared the disease hit fast and hard. No relapses and remissions for you, only progressing disability, a creeping paralysis. Less than four years after that cold day in March, the beast forced you to "retire" at the ripe old age of 43, just when your career was poised to go parabolic. A year later MS planted your ass firmly in a wheelchair. Fast forward 10 years to the present and your right side is dead weight. Your declining left side insists on following the same horrid script written by your right, like a bad sequel to a terrible movie. Somehow, on most days you outwit despair, focusing on whatever glimmers of hope the gaping abyss before you can’t hide. On other days the darkness wins out.

You remember that years before the limp you'd experienced a series of odd symptoms that defied explanation. In 1997 the doctors thought you might have a rare form of lupus, but the medical minds could never arrive at a conclusion, and during the five or six relatively quiet years after you pushed any concerns aside. On the whole, that would make it 21 years since things started going haywire. Your disease could be getting its bachelor’s degree by now. A BS in MS, or, more appropriately, a BS in BS. As an adult, you've been sick longer than you've been healthy. The gods must be crazy, and an indifferent universe could not care less.

You ponder all the things these wearisome years have taught you, from nuggets of wisdom to knowledge you’d rather not possess. You’d have been perfectly happy to live out your days not knowing that for some reason you quickly fall asleep in the noisy, claustrophobic confines of MRI machines, that you’d rather have a spinal tap than dental work, and that you have an innate ability to grasp complicated medical concepts and translate them into plain English. As hidden talents go, you have been fine with leaving that one undiscovered.

Then again, you always had a knack for cutting through the bullshit, and the reality is that most medical jargon exists primarily to confuse the public and hide the fact that large parts of the purportedly gleaming modern medical miracle machine are in reality constructed of chewing gum and chicken wire. You would relish being happily unaware of the fact that for some physicians medicine is indeed a calling, but for many others it is primarily a business. Just like any other job, some are very good at practicing medicine, but others just plain suck. What do you call somebody who graduates from medical school with a C- average? A doctor.

All the downtime that comes with being a cripple has provided you ample opportunity to dissect your long-lost healthy life and graced you with perspectives you likely would have otherwise never gleaned. You remember with deep regret all of the healthy time wasted on the small stuff, and you now see with crystal clarity that almost all of it was small stuff. If you could only have back half of the sleepless nights and anxiety-filled days vainly spent lamenting lost loves and missed opportunities. In retrospect, you see that new romances and promising circumstances inevitably came your way just as soon as you reluctantly let go of your negativity and allowed room for new people, places, and things. Our emotions are born of us, not we of them, and just as you now most often choose hope over despair, you could then have decided to seek contentment rather than wallow in self-imposed neurotic torment. Over the long run, most people are dealt an equal number of good and bad hands; it’s the way you choose to play them that determine the winners and losers. But just as youth is wasted on the young, health is wasted on the healthy.

You think of all the incredible souls you’ve met since your diagnosis, other MSers coping with the disease with their own mixture of poise and grit in the face of mounting indignities and physical insults. They have inspired you, commiserated with you, laughed and cried with you. You rue the toll you’ve seen the monster take on so many. You grieve for those who gave it their all but eventually succumbed. You remember each of them with perpetual sadness at their passing and mounting anger that more has not been done to put an end to this scourge. Treating but not curing is a great business model, but far too many human beings are left withering on the vine as the MS industry seems quite content with this paradigm, it's coffers overflowing.

The ripple effect of the disease is insidious, and you feel guilt at the impact your illness has had on your friends and loved ones. You are keenly aware of the palpable emotional pain felt by your old mom and dad when they see or hear about your ever compounding struggles, of the hidden disappointments experienced by your incredibly loyal wife who has watched her own dreams of a future filled with romance and adventure pilfered and plundered, of the unreturned emails and phone calls from friends left wondering why you choose to remain out of touch even though you hardly leave your apartment. You have no real answers for them, except that on some basic level you now understand why gravely wounded animals retreat into the brush to meet their fates alone.

Most 15 year anniversaries warrant some sort of celebration, but you don’t feel much like celebrating this one. You are grateful to still be here and to retain the functionality to write this essay, but having been struck with this disease is something you will never, ever get used to. Each day you awake to the shock that your dreams are not reality and your reality is not some demented dream. In instants without distraction, you wonder how much more of this you can take and even how much more of this you want to take? 

You somehow find ways to occupy yourself despite a growing alienation from the healthy world that surrounds you. You fight the envy you feel for those who walk and jog and gesticulate, utterly oblivious to their incredible good fortune at simply being able to do so. You listen to those tied in knots by troubles that you now realize are mere fripperies, and fight the urge to scream that you’d swap their plight for yours in half a heartbeat. You are not proud of these feelings, but there they are.

Most of all, you simply persevere. You try to make sense of it all, to tease some meaning from these last 15 years, to convince yourself that there is some method to this madness. You wonder if some long-ago actions taken or not taken, or decisions made or not made, might have led you down a path free from MS. You mourn what might have been, what almost was. You dig for nuggets of hope and reasons to believe, even if that means mining through vast mounds of existential detritus. 

Time and time again you ask yourself and the universe, “what’s the point?”, until you finally realize that the real question is “what’s the point of asking what’s the point?” You decide that if there are any answers, they are beyond the scope of your comprehension, and then you turn on the latest episode of The Walking Dead and start asking the really important questions, like how in the world you would charge your electric wheelchair during a zombie apocalypse? And, if you were to become a zombie, would you suddenly be able to walk? Or would you be one of The Rolling Dead?

Priorities, friends, priorities…

Here’s one of my favorite songs by the great American songwriter John Prine, the lyrics of which pretty much sum it all up for so many, sick and healthy alike. BTW, an “Angel from Montgomery” is what death row inmates used to call a governor’s stay of execution in the state of Alabama…

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)

(Not) Born This Way

(To those who receive this via email, this essay contains a video which can be viewed on the Wheelchair Kamikaze website – click here)

Later in May I’ll be marking the 13^th anniversary of my official diagnosis with Multiple Sclerosis. Believe you me, the date won’t be punctuated by any festivities, but more likely with a shake of the head. Thirteen official years with this motherfracker and it’s still a shock, despite my mounting disabilities and the indignities that go with them. At this point my healthy days are becoming a distant memory, so much so that many of the details of my way-back-when life have taken on a dreamlike quality, as if they are no more than the ethereal inventions of a somnolent mind.

But no, indeed there was a time when I was healthy, and yes, I did actually do all of those things that are stored in my memory banks. Thing is, looking at me now, except for the unfortunate developments of the last 13 years, nobody could ever guess at the experiences that shaped me. This certainly wasn't true when I was well, when my outward appearance most definitely reflected many of my life's experiences, my likes and dislikes, and, I think, something of the essence of my soul. Though I wasn't a peacock, I did take pride in my appearance, and often wore a rotating selection of the antique wristwatches and jewelry (some of the jewelry dating back to ancient times) that I passionately collected. Yes, I'll admit to a touch of vanity, but mostly I just wanted my outward appearance to be a natural extension of the person wearing the clothes.

One of my favorite pastimes is people watching, and part of what makes that activity so endlessly fascinating is imagining the life of each person spied, constructing a momentary narrative of their past, present and future. Writ large on many folks is an imprint of their lives, of dreams and aspirations filled or failed, of triumphs exulted and disappointments swallowed. That sly looking older gent, snap brimmed hat worn at a jaunty angle and eyes all a twinkle certainly had his adventures, quite likely a few too impolite to be told in public. Was he CIA or Mafia, and is there really a difference? That fashionably retro young lady, trying so desperately to come off cooler than a Frigidaire, masking not long ago awkward teenage years and a mass of insecurities still harbored inside, her wannabe Audrey Hepburn exterior a veneer for the Olive Oil heart pumping within.

Most of us project who we have been and who we want to be through the image of ourselves we construct for the outside world, some more consciously than others but almost all having their tells. My current wheelchair bound, physically decrepit state serves as the ultimate unwanted camouflage, to my chagrin. Spastic, atrophied limbs and my mechanical means of ambulation paint a picture likely to overwhelm any I might otherwise want to project. When I first got the chair and was less disabled I made it a point to try to be the most fashionable gimp possible, choosing clothes and accoutrement that screamed “personality”. Now, though, forced by the ravages of my illness to wear garments picked far more for practicality than self-expression, my outward appearance speaks primarily of my medical predicament and not of the life that preceded it.

It’s strange how invisible one can feel when sitting in a hulking 350-pound mechanical monster. The simple fact is that most healthy folks don’t spend much time contemplating the person and personality sitting in the wheelchair, preferring to devote their thoughts instead to less morbid topics. Thinking too hard about the person in the wheelchair might provoke some rather unpleasant truths, including the disturbing reality that with a single stroke of bad luck that person in the wheelchair could be you. Truth be told, back when I was among the healthy I was one of those who didn’t give much thought to folks in wheelchairs or scooters. Though I’m generally an empathetic guy, I don’t think I ever took the time to contemplate life through the eyes of the disabled, or imagine the path that brought them to their current state. It was much easier and less troubling to simply assume that they had just been born that way or had in some other fashion materialized in that wheelchair fully formed, like a pod person from The Invasion of the Body Snatchers. Dummy.

Well, for the record, I’d like to state that I was definitely not born this way. This summer it will be eight years since I was forced into my first wheelchair, and about 11 years since I exhibited my first blatantly obvious outward signs of disability. The life I lead before MS intruded upon it was varied and colorful, filled with experiences ranging from the ridiculous to the transcendent. And some that were transcendentally ridiculous.

At age 17 I worked for a dirty magazine, at 23 I was the lead singer of a punk rock band, at 30 a creative cog in a large buttoned down multinational corporation (yuck), and at 36 found myself heading up the DVD production department at one of the foremost music/TV/video production facilities in the world.

I played an important part in the making of over 300 mostly music related DVDs, and have a platinum record on my wall and a listing on IMDb.com to prove it. And even though that all sounds interesting in the telling, I never found much satisfaction in my work life.

I was a habitual night crawler, carousing past dawn more times than I can remember or count. To this day I’m rarely in bed before 3 AM, and strive to be blissfully ignorant that there are two 10 o’clocks in one day.

I suffered several broken hearts, but also broke a few along the way (sorry for that). I learned that although the faces and circumstances of each heartbreak differ, the heart tends to shatter along the same fault lines every time. And that after each heartbreak, which I neurotically nurtured, I was only as alone as I wanted to be.

I was almost murdered (twice), suffered a detached retina after hitting a really big guy in the fist with my eye, and once unceremoniously projectile vomited at my boss’s table during a raucous office Christmas party. Oops.

I drove fast cars way too fast (how else to drive them?), bet on fast horses that mostly turned out to be not quite fast enough, and fasted on Yom Kippur.

I shot video professionally while flying in vintage war planes, police helicopters, hot-air balloons, and even the Goodyear blimp, twice.

I jumped out of an airplane.

I came face-to-face with a 10 foot bull shark while snorkeling over a reef a few miles out in the Atlantic off the Florida Keys. I wish I could say that I faced the moment with steely resolve, but in plain fact I tried my best to run back to the boat that brought me there, proving once and for all that I am not the son of God. This did nothing to ingratiate me to my then girlfriend, left behind in my panicked wake. Please see the note on heartbreaks, above.

I won the lottery (for thousands, not millions), shot a hole-in-one, and came in first in an online poker tournament.

For a while I swam a mile every day, slicing through the waters in a meditative state engendered by the womb like environment of the pool and the repetitive physicality of the exercise. How I miss that.

I made friends with some very special people, relationships that matured beyond mere friendship to become family. These precious folks are an integral part of who I am and how I view the world. And I owe most of them long overdue phone calls.

I married an angel.

At times I've been down to my last dime and at others have been flush with cash, and learned that what my grandmother used to tell me about wealth when I was a kid was true: rich or poor, it’s nice to have money.

I could go on, but I’m sure you get the gist. I realize, too, that my becoming disabled has afforded me some extraordinary experiences that I otherwise certainly would’ve missed, and not all of them involve unpleasant medical procedures. Through these pages I have touched and been touched by people from all over the world. My MS “get out of work free” card gave me a reprieve from the working world, and allowed me the freedom to dust off parts of myself that had been left neglected for decades. I’ve made some very special new friends who are in one form or another members of the MS club. I owe most of them phone calls, too.

Despite the fact that I am, of course, still the sum of all of these parts, as my disabilities mount they increasingly pirate the persona the public at large sees when I venture outside my apartment. It’s impossible for them not to, as my wheelchair has no invisibility button, and my withered and weakened limbs can’t be camouflaged by even the most snappy pull over shirts and elastic waisted pants. I know I'm not alone in these feelings, as I sense some of the same frustrations in the knowing glances and nods exchanged with other wheelchair users that I pass on the streets of New York. Funny thing is that some of the most interesting people I’ve ever met are fellow wheelchair jockeys, most of them imbued with a quiet wisdom and sense of the absurd accrued by enduring the foibles of our shared tribulations.

Indeed, most of us in wheelchairs were not born this way, and if that fact makes some members of the healthy world uncomfortable, well, sorry for that but get over it. Although a quick look at me may no longer reveal the kernel of who I am and where I’ve been, I'd be happy to share the lessons learned and laughs picked up along the way with one and all. I am much more than this faulty and misshapen body; there's still a person in here filled with all the simplicities, complexities and idiosyncratic contradictions I've collected all these years. To find out what lurks within requires but one magic word. Hello.


Writing this essay brought to mind a wonderful song written and recorded by John Prine in 1971 that touches on many of these same themes, though in the context of old age rather than disability. It’s one of the most poignant songs I’ve ever heard…

New Year's Eve Through MS Eyes

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 with a lusty 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 soirées 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 forever 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 had 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 long in the tooth black and white console TV. We didn’t have much money and lived in a building in the Bronx that was closer to tenement than 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 somehow defiantly low rent 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 got older, as a young adult I fully embrace the revelry of the holiday. I had quite a few memorable New Year’s Eves, 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. 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 good 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 one’s 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 voice, “Happy New Year’s!”…



Here's some wonderful old footage of a Guy Lombardo ushering in New Year's Eve in 1957, a few years before my time…

Creeping Paralysis

Back before the words Multiple Sclerosis entered the general lexicon, the disease, especially in its progressive forms, was commonly called Creeping Paralysis. A quick Internet search through the archives of the New York Times reveals the term being used on quite a few occasions dating back to the 1870s (when the archived materials begin), most often and quite disconcertingly within the text of an obituary. A typical example is the 1886 obit of a Mr. Benjamin Moran, an American diplomat stationed in London who was apparently quite the bon vivant, a “great society haunter” who was “smart, lively, and amusing” (click here to download a PDF of the obituary). As described in Mr. Moran’s written memorial, “For the last few years he was a dreadful sufferer of Creeping Paralysis, which rendered him completely helpless…”. Sigh.

Of course, we can’t be sure that Benjamin Moran suffered from Multiple Sclerosis, as Creeping Paralysis is an apt label for any number of similar maladies, such as ALS (Lou Gehrig’s disease), or advanced spinal stenosis. Still, Creeping Paralysis is a terrific descriptor of the effects of Progressive MS, so much so that I’ve often used the phrase here on these pages, and I’ve considered wielding it as an answer when people wonder out loud just why my backside is stuck in a wheelchair. “Creeping Paralysis” would certainly quench their curiosity more effectively, I would think, than the clunky and hard to decipher answer that I currently employ, “Progressive Multiple Sclerosis”. There is much confusion about just what the hell Progressive Multiple Sclerosis is, even among people with Multiple Sclerosis. Progressive Multiple Sclerosis sounds like some kind of politically left leaning version of the disease, whereby Creeping Paralysis sums up the disease and its perils in two easy to understand words, very clear and concise. “I have Creeping Paralysis”. Conversation over.

Unlike Relapsing Remitting MS, whose torments come in the form of acute attacks that eventually recede, sometimes leaving residual symptoms in their wake, Progressive MS is the gift that keeps on giving, inflicting a slow, steady decline in function leading to ever increasing disability over time. In other words, Creeping Paralysis. Mine first crept up in 2003 as a slight buckling of my right knee that only surfaced after I had walked several miles. I’d experienced any number of weird symptoms for years before, but it was the knee that finally sent me to the doctor. Over the next weeks and months, that initial problem spread to ever-increasing weakness invading my entire right side, insidiously creeping through my right leg, arm, and hand. Three years post diagnosis I needed an ankle brace to keep my right foot from dragging along the ground when I walked, year four saw me using a cane, and in 2008, five years after I’d been slapped with the MS label, my Creeping Paralysis had done enough damage to insist that I use a mechanical throne for ambulation.

Creeping Paralysis treats each of those it abuses differently. I know some folks who have had the disease for decades and are still walking, while others find themselves bedridden within 10 years, sometimes sooner. Generally, the disease treats women more gently than men, although, unlike Relapsing Remitting MS, which victimizes women far more often than men, Progressive MS attacks men and women in equal numbers. While there are currently about a dozen approved treatments (however imperfect they may be) that can help keep the worst ravages of Relapsing Remitting MS at bay, at present there are no treatments that have proven to be effective in even slowing down Progressive MS for the vast majority of the people it attacks.

During my first five years with the disease, the paralysis I experienced felt less like it was creeping and more like it was blitzing through my body like the Nazi armies crashing through Belgium on their way to overtaking a completely underprepared, overwhelmed, and horrified France. Five years may sound like a long time, but when those years see you diminished from fully functional to wheelchair reliant and from working to “on disability” they seem like the blink of an eye.

For many years my Creeping Paralysis was confined almost exclusively to my right side, leaving my left largely untouched, allowing me the hope that this would continue to remain the case and that I’d retain a fully functional left arm and leg, a situation I wasn’t happy about but with which I could make do. ‘Twas not to be, however, as whatever obstacles had kept the creeping temporarily restrained to one hemisphere of my body fell by the wayside, and for the last several years the paralysis has assaulted my right side as well, increasingly taking hold. Despite all efforts – and the list of those efforts is incredibly long and varied – my Creeping Paralysis has yet to meet its Waterloo (yeah, yeah, I know I’m mixing up my military metaphors, so sue me).

Increasingly, I’m finding that Creeping Paralysis is impacting not only my body, but my mind and spirit as well. As the disease has become more and more entrenched, and my body less and less able, I suppose it’s inevitable that the condition takes a psychological toll. I’ve learned that paralysis can extend beyond the physical realm. The bodily restrictions imposed by the disease are increasingly accompanied by a psychological reticence to test the boundaries defined by those restrictions; it’s far easier and much less disheartening to curtail activities that once gave me pleasure rather than find out for sure that I can no longer do them. Thus my old hobbies of shooting videos and taking photos from a camera mounted on my wheelchair have fallen by the wayside, my camera equipment gathering dust for the last 18 months or so, it too victimized by my Creeping Paralysis. The ever less dexterous fingers on my one working hand can’t properly control my camera and lenses, and my last attempts at photography proved to be nothing but exercises in frustration.

When simply getting dressed pushes the limits of what is physically possible, the prospect of committing to social activities becomes daunting. Healthy folks seem to have a hard time understanding this. After all, just a few years ago I was out in my wheelchair meeting them for lunch on a regular basis. Thus, despite my best intentions, Creeping Paralysis has frozen not only some of my body parts but some of my relationships as well. I can’t blame friends and family for drifting away in the wake of unreturned phone calls and unanswered emails, but I try not to blame myself, either. In addition to Creeping Paralysis, I have also to deal with widespread endocrine dysfunction and a hideously painful degenerative bone condition, and at times even when there is a willingness to interact, the effort required for lively conversation or the composition of a lucid note can be simply too much to muster. Creeping Paralysis seems to rejoice in imposing limitations on all aspects of life.

There’s a fine line between capitulating to the disease and adjusting to its ever-changing realities. I have found the that less I am able to do the less I am interested in doing. Being out and about in the healthy world, among all of the obliviously fortunate people whose limbs perform seemingly miraculous feats without any apparent effort – like walking or using a knife and fork – can offer much-needed distraction, but can also place a laserlike focus on all that I’ve lost, almost mocking me for those losses. Even watching television can become a seriocomic affair, as commercial after commercial advertises products that are no longer of any use to me, hawking them to a population of which I am no longer part. Cars, exercise machines, the latest electronic wonders, items that in some long-ago life might’ve piqued my intense interest now serve only to illuminate the ugly metamorphosis I'm experiencing courtesy Creeping Paralysis.

Despite the at times dour tenor of this essay, please know that through it all I still laugh far more than I cry, still strive to find nuggets of joy wherever I can, even if I have to dig through piles of manure to get at them. I’m fighting the many components of my disease as hard if not harder than ever. Earlier today my wife and I chuckled as we marveled over the fact that I’m taking medicines in pretty much every way they can be taken. I’m inhaling aerosolized antifungal medication to treat a potential mold infection in my sinuses; getting injections of testosterone as part of my fight against my endocrine issues, ingesting antimicrobial drops and liquid probiotic cocktails in an effort to rebalance my gut Microbiome, getting an intravenous treatment called plasmapheresis in an attempt to beat back the Creeping Paralysis, and taking pills by the dozen. We concluded that the only mode of drug delivery I’ve missed is anal suppository. I’ll have to get hard at work on that one. Not.

So there you have it, Creeping Paralysis and my experiences with it. Hopefully, with an assist from modern medicine, I’ll ultimately fare better with the disease than the unfortunate Mr. Benjamin Moran, whose obituary I highlighted earlier. Somehow, calling my illness Creeping Paralysis rather than its more modern and scientific name gives me some strange sense of satisfaction. No beating around the bush with a name like Creeping Paralysis, it presents the illness in all its stark reality. Using a term as impenetrable as Progressive Multiple Sclerosis in some ways insulates those involved from confronting directly the potential horrors of the disease, a trick at which modern medical nomenclature excels. I’d rather stare this bastard right in the eyes and call it what it is: Creeping Paralysis, a name as ugly as the disease itself.



Oh, if anybody can shed any light on "the culture of the jumping cat" that is mentioned in Benjamin Moran's obituary, I would be forever grateful. Again, you can download the obituary by (clicking here). I'd just love to know what was meant in the 1880s by "the culture of the jumping cat", but can find no reference to it anyplace else. Please leave any ideas in the comments section of this post.

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Thoughts Formed While Staring At The Ceiling

I’m baaaaack! Due to circumstances beyond my control, it’s been quite a while since I posted anything to this blog. My long absence from the blogosphere (is there an uglier word in the English language?) was not due to alien abduction, time travel, or simple lack of interest, but rather because I was, in a word, sick. Sicker than normal, that is. So sick that I could barely get out of bed for about six weeks, feeling, as they say in the hallowed halls of medicine, horrendously yucky.

Turns out that my case of the horrendous yuckies was caused not so much by my mysterious and ever progressing neurologic crap, but rather an obstinate sinus infection and – mostly – my completely messed up endocrine system, which decided to go utterly out of whack. Take it from me; having an utterly out of whack endocrine system is definitely not more fun than a barrel of monkeys, or even one monkey with or without a barrel. After two rounds of antibiotics and much tinkering with my various endocrine meds, I’m finally feeling halfway human. Since there are strong suspicions that I may only be half human anyway, things are definitely looking up.

Speaking of looking up, my six weeks spent in bed doing my best impersonation of an area rug gave me plenty of time to do just that, look up and study the intricacies of the ceiling over my bed. Since that pastime got old pretty fast, instead I couldn’t help but start peering deep within my own brainpan, an activity that comes dangerously easy to me anyway, given my lifelong proclivity for introspection. While there are plenty of interesting nooks and crannies inside that creaky old noggin of mine, there are also all kinds of surplus flotsam and jetsam in there as well, along with some scary beasties that are better left undisturbed lest they wrap their tentacles around your naughty bits and begin taunting you with really bad impersonations of Ernest Borgnine in “Marty” – a wonderful movie which if you haven’t seen already I highly recommend you watch right this second (click here).

Also found stuffed in the neglected dusty and cobwebed steamer trunks of my mind were memories, lots and lots of memories of people, places, and things, some of which hadn’t seen the light of day in decades. It’s amazing how many seemingly trivial moments remain captured in crystal clarity in our heads long, long after they occurred. Some were a treat to revisit, others not so much. Nevertheless, all of this mental poking, prodding, and reflecting done during my enforced period of respite resulted in some observations on life with and without chronic illness, some of which I thought I’d share in an attempt to make my time spent infirm not a complete waste. Some of the these may be trite and/or unoriginal, others a bit more significant, but I think all are true. Do with them what you will, but please keep your Ernest Borgnine impersonations to yourself…

♦ Time flies even when you’re not having fun. I’ve been diagnosed with “atypical” MS for over 12 years, and have been dealing with various troubling symptoms for longer than that, during which time I’ve lost the use of the entire right side of my body and an increasing amount of my left, and still it feels like all those years went by in the blink of an eye. Time is every person’s most precious possession, and each passing moment diminishes our allotment of this priceless endowment, never to be recovered. Time spent wallowing and worried over things inconsequential is time indeed wasted, and in the grand scheme of things almost all circumstances and situations except the absolutely most dire turn out to be inconsequential. With few exceptions, lost loves give way to new romances, lost jobs to fresh opportunities, lost monies to refilled coffers. As long as a person is of sound mind and body the power to reshape their destiny is entirely theirs to command. Once recognized, past mistakes and self-destructive patterns can serve as illuminating roadmaps to a more fulfilling future. Not that the losses shouldn’t be felt, but letting those hurts linger and poison future moments, moments filled with endless possibility, amounts to time spent in a prison of one’s own making. Regrettably, a lesson I learned far too late in life. Another lesson I learned far too late in life is that trying to put your underpants on over your head is but one more terrible waste of time. Go figure.

♦ Judging people by their outward appearance is about as foolhardy as it gets, unless they are blood spattered and brandishing weapons. As I’ve previously recounted on these pages, at one point in my life I found myself an unwilling resident of the state of Florida, very much a stranger in a strange land. It seems I shared little by way of aesthetic sensibilities with most of the other residents of The Sunshine State, and for quite some time I felt extremely isolated. As I got to know people, though, most of whom looked and thought very differently than the people I was used to socializing with in New York or Boston, I came to realize that many of them were full of delightful surprises. One very burly and proudly blue-collar man, who at first glance would seem to be the antithesis of the artsy types I hung out with up north, turned out to be one of the most interesting and entertaining friends I’ve ever known. One thing I realized we shared early on was a taste for booze and bars, and on one of our first nights out on the town together, after downing a few, he confounded me by suddenly spouting by rote memory verse after verse of Rudyard Kipling poetry, recited with a heartfelt vigor that left me dazzled. “If you can make one heap of all your winnings, and risk it on one turn of pitch and toss, and lose and start again at your beginnings, and never breathe a word about your loss…”. During the rest of my Florida years we would have quite a few inebriated adventures together, and through them all I’m sure I learned more from him than him from me. I haven’t seen or spoken to my friend in at least 16 years. Denny, if you’re out there, thanks for the surprises and all the good times.

♦ On that note, it’s vitally important to let the people who brighten your world know just how much they mean to you. No need to get all gushy and maudlin, but acknowledging the good people now will save you regret later on. I had the good fortune of working closely with two of the most brilliant people I ever met, at a major audio and video production studio here in New York City. When I first received my MS diagnosis they were both visibly upset and tried to express their concern and sympathy as best they could, genuinely chagrined at the bad break I’d received. Well, 12 years later I’m still here and they’ve both since passed away, one with shocking suddenness and the other after a long illness. I never really expressed to either one how special I thought they were, at least not directly. We cry at funerals not for the departed but for ourselves, for everything left unsaid and for the part of us the lost take with them. I have an awful lot of phone calls I need to make.

♦ While we are still on the subject of people, although it is foolish to judge folks by their outward appearance, judging them by the company they keep can save you a whole lot of trouble. Birds of a feather, as they say. I once had a long-term relationship with a woman who, on paper, seemed almost perfect. She was extremely easy on the eyes, had an interesting, even noble profession, was possessed of a sharp mind and a keen sense of humor, owned two great dogs (a big plus in my book), and had wonderful parents. The only thing that bothered me about her from the outset was her friends. Though this may sound impolite, they all made my skin crawl and seemed to me on the whole to be a thoroughly distasteful bunch. The passage of time would confirm my instincts about pretty much the entire crew, and despite any initial illusions otherwise, my ex turned out to be a great fit among them. Of course, in retrospect, early on I chose to willfully ignore copious signs of this woman’s toxicity, for I was truly a fool for beauty. Unless extraordinarily motivated, people generally stay true to their nature and if you think that you are somehow going to change them you’re cruisin’ for a bruisin’… Years later I married a woman with a kind heart and genuinely good soul, beautiful both inside and out. I suppose the universe taught me a lesson I desperately needed to learn, and boy, I sure am glad I learned it.

♦ Chance plays a tremendous role in shaping the contours of a life, but there are key moments when decisions made or not made, or actions taken or not taken, can change the whole ballgame. How important it is to recognize those moments and in doing so bend the fates to your favor. As a young man I suffered greatly from HUMA (Head Up My Ass) syndrome, and lived my life with all the conviction of a fart in a windstorm, mindlessly rather than mindfully. Though I harbored grand dreams of fame and fortune, I spent far too much time dreaming rather than doing. I did manage to eventually find success in what many people consider a “glamour” industry – video and television production – but I always had gnawing within me the feeling that I was meant for other things. When my illness forced me to “retire” and eventually start this blog, I discovered a much truer me, a me that had been MIA for decades. Fear, I now realize, played a tremendously negative role in the direction of my life, fear of both success and failure, playing itself out in too many ways to count. Lying sick in bed this last month and a half I sifted through all of the chances missed and all of the roads not taken, almost all due to lapses in confidence, neurotic apprehensions, or sometimes simply the weight of inertia, and I was overwhelmed by the sheer magnitude of all of the collected “what if’s”, a latticework of paths left unexplored. Who knows if any of them any might have led to a place without MS? In a weird twist of fate my illness has resulted in some of my dreams finding realization, but geez, the price has been steep. I suppose such things don’t come cheap, though. Unless, of course, you’re a Kardashian.

Okay, with that I’ll leap off of my soapbox (as if I could even get on a soapbox, or leap). Thanks to all of you for taking the time to read Wheelchair Kamikaze, and for commenting, sending notes, and breathing life into this thing. You’ve given method to the madness of my getting sick, and for that I am eternally grateful. When they find a cure for this whole MS thing you’re all invited over to my place for a shindig that will leave my neighbors pissed off for years…