New Year’s Eve Through MS Eyes

(I first published this essay back in 2015, and it’s become my New Year’s tradition to post it again every January 1. I think the sentiments expressed can be appreciated by most people dealing with MS, especially those with the the progressive type. This last year has been pretty rough, but I hope to have some new essays written soon. I know I’ve said that before during the last few months, but this time I mean it! In the meantime, Happy New Year’s to all!)

Back in in my healthy days, before 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.  Though back then 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.

For sure, 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, while  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 well worn 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 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 old metal pots and pans. Then, using big spoons as drumsticks, we burst into the hallway of our apartment building, banging with joyous intensity on those dented and 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 16 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 better fortunes then those which now belonged to history.

For the healthy masses, New Year’s Eve crystallizes 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. 

Unlike those healthy New Year’s Eve revelers on TV, no amount of willpower or change of habits will arrest this bitter physical decline. 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. The mantra of “staying in the moment” does help to keep me grounded, but there are also times when the moment just sucks. 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.

So, 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!”…

Me, Myself, and MS

(The Multiple Sclerosis Association of America asked me to write a guest post for their blog, MS Conversations, on the subject of MS and relationships. This is the essay I wrote for them. Please check out the MSAA's website (click here) which offers a wealth of info on all aspects of the disease, and material and financial help to MS patients in need.  Also visit their blog, which features posts from many different writers (click here). The MSAA is a terrific organization, and I hope you'll take some time to get to know them.)

Beginning at the moment of diagnosis, people with multiple sclerosis face a rogue’s gallery of disorienting circumstances. The long process of socialization that starts when we are children never prepares us for life with a chronic, potentially disabling illness. Newly minted MSers often find themselves thrust into an alien landscape without the benefit of any maps or navigational aids, left to find their way through a haze of fear and confusion. The social compact which we are taught almost from birth – work hard, play well with others, and your rewards will be reaped – is smashed to smithereens by these four simple words: “You have multiple sclerosis.”

Among the countless aspects of life impacted by the MS are relationships; both the external we have with others and the internal we have with ourselves. Several studies have shown that the divorce rate among couples with MS is significantly higher than those of the general population. Adding the responsibilities of “caregiver” to a spouse or lover can be too much for some to bear. Many friendships are held together largely by shared experiences. If a person with MS is no longer able to engage in their previous level of social activity, those attachments can fray and sometimes break entirely. Old relationships are often replaced by new – some of my closest friends are now other people with MS, who understand the complexities of this odd life without need of explanation.

Perhaps the most important and least acknowledged relationship affected by MS, though, is internal, the one a patient has with themselves. Facing the realities of life with a chronic and potentially debilitating illness forces one to reshuffle priorities, reorient and sometimes abandon long-held hopes and dreams, and ultimately grapple with who they are at the very core of their being. 

Nothing defines the notion of mortality more sharply than being diagnosed with a serious illness. Gone are the illusions of invincibility that we cling to as we strive to climb the social pyramid. Patients with more benign disease may be able to keep up appearances, but deep inside aspects of life that had long been taken for granted are revealed to be not birthrights but precious gifts, subject to being yanked away by the whims of an inscrutable universe.

For the first few years after my diagnosis, when I was still able to work and socialize much as I had before the onset of my illness, at times I felt as if I was a covert agent, possessed of a vital secret kept hidden from the world at large. As my disease progressed and hiding in plain sight was no longer possible, an inevitable reckoning began to take place. I was left to confront aspects of my emotional history that had long been stowed away in the dusty recesses of my psyche. 

When my accumulating disabilities forced me to retire, effectively bisecting the narrative flow of my life into “before disabled” and “after disabled”, I found it almost impossible to not look back and contemplate the roads not taken, the opportunities missed. Might a different choice made here or there have allowed me to avoid the trap of multiple sclerosis, or to have lived a richer life before the onset of disease? A question without answers, of course, but also a line of inquiry that begs for the illumination of self-awareness. As the Persian poet Rumi wrote, the wound is where the light enters.

MS led to my pondering the me who lurked within, stripped of the material trappings of my healthy life, which more and more became useless as my disabilities mounted. I soon saw that those adornments often served as a sort of camouflage, shiny trinkets employed to distract the overly curious, myself included. Who was I with soul stripped bare by the harsh realities of chronic illness, naked in this strange new world?

I discovered facets of my personality that had been long neglected, and rekindled interests and passions that I’d almost forgotten existed. I recognized and then worked on abandoning self-defeating habits I wish I’d been cognizant of when I was well, behaviors that served no purpose other than to hold me back, then and now. I came to understand the power of forgiveness, extended not only to others but also to myself, and that absolving myself of past mistakes was far more challenging than pardoning the misdeeds of others. Indeed, kindness to self can be the hardest form of kindness to practice.

Oddly, I am more at ease with who I am now than I ever was back in my healthy days. And though I’m loath to grant any positives to my experience with this disease, it would be foolish of me to deny the self-knowledge and maybe even the touch of wisdom that multiple sclerosis has granted me. Although creeping paralysis is becoming an ever-greater presence in my life with each passing day, I am and will always be more than my disease. I’m not a unicorns and rainbows kind of guy, and I chafe at platitudes about the universe only giving us as much burden as we can bear. But I will say this: getting sick and eventually quite disabled has weakened my body, yes, but it has also strengthened the spirit within.

Attacked by a Three-Headed Beast

When I first started writing Wheelchair Kamikaze back in 2009 I had very little idea of what these pages might eventually evolve into, but I did know that I didn’t want the blog to take the form of an illness diary, a simple journal of my MS symptoms and day-to-day experiences with the disease. Instead, I wanted to concentrate more on the emotional and perceptual impact of dealing with a progressive crippling disease, of being forced to slowly watch one’s body being consumed from within while trying not to lose one’s head in the process. I also thought the blog would be a good place to share my growing obsession with digging into MS research and my efforts at making some sense out of all that I found.

Having said that, of late my physical ailments have been giving me a pretty good trouncing and I’ve started to feel as though I should probably fill everyone in on the details of my puzzling illness, especially since my increasingly feeling like crap is definitely impacting my ability to keep up with regular blogging activities, particularly so when it comes to responding to the many heartfelt comments, messages, and emails sent by the readers I value so much. I’ve always striven to be extremely open and honest on these pages, and it seems almost disingenuous for me to not directly address my physical state when feeling like crud is taking up so much of my damned time.

I’ve often referred to my condition as “complicated” or “atypical” without going into too many details or explaining exactly what I mean. So, here’s what’s been going on with me physically, in all its glory. My body seems to be under attack by a three-headed beast, a triple whammy that these days has me wondering just who the hell I’ve pissed off.

First up there’s my neurologic illness, which just keeps whacking away at me, and of which I’ve written about most often on these pages. My preferred name of this slice of my physical mess is “creeping paralysis”, which is actually an archaic moniker for multiple sclerosis and other progressive neurologic diseases from back in the 19^th century. Although I present symptomatically very much like a patient with progressive MS, many of the doctors I’ve seen have been hesitant to definitively label me as having multiple sclerosis since almost all of my test results defy the accepted diagnostic criteria for the disease.

Foremost among the odd aspects of my illness is the fact that I’ve only ever had two central nervous system lesions, neither of which have ever shown any signs of active inflammation: a tiny one in my brain and a much larger, more invasive and troublesome monster located at the very top of my cervical spine, at the critical juncture between my spine and brainstem. I’ve been told that this lesion is so invasive that it’s almost like having my head cut off.

These two lesions haven’t changed one bit or been joined by any others in the 12 years since I first exhibited the telltale limp that eventually led to my initial diagnosis, yet my physical condition has gone straight downhill ever since. In fact, this duo of destruction even show up fully formed on a set of MRIs done to get a look at my pituitary gland back in the year 2000, a full three years before I started limping. At the time these images were first made these lesions were completely overlooked, until they were discovered with much surprise by the doctors at the National Institutes Of Health while they were going over every MRI image I’d ever had done as part of a comprehensive effort to determine just what it is that ails me, a goal neither they nor any other physician has ever able to satisfactorily complete. So, I’m left with a diagnosis of “atypical PPMS”, and I’ve come to grips with this by insisting that in my case those initials stand for the “Peculiar Paralysis of Marc Stecker”.

Whatever you want to call it, my neurologic illness has been anything but kind. It’s left my right side almost completely useless, the muscles in my hand, arm, and leg withered and twisted. Most of the time my right hand is curled into an emaciated claw, an appendage that would look more at home on a mummy than on a living human being. My right side is becoming increasingly impacted as well, getting weaker and less able almost by the day. At times it seems I can just about watch the muscles in my left arm and hand melt away, and with them any remaining semblance of normalcy in my life. Throw in most of the other goodies that come with neurologic illness, such as spasticity, numbness, tingling, immense heat intolerance, and bladder and bowel issues, and the toll has been staggering.

But that’s but one tine of a three-pronged assault on my physical well-being. I also have a wide range of endocrine problems, most likely due to a severely dysfunctional pituitary gland. The pituitary is the human body’s master gland, sending out chemical signals that regulate hormone production in all of the other glands that make up the endocrine system. Because my pituitary is on the fritz – likely because of some kind of autoimmune attack – I experience a wide variety of hormonal deficiencies, some of which if left unchecked can be just as debilitating as my neurologic issues. Among other hormonal abnormalities, I suffer from low testosterone, low cortisol, and low thyroid levels. Although I take various supplements and medicines in an attempt to make up for these deficits, my endocrine system is balanced on such a razor’s edge that if anything goes awry my overall symptoms often get magnified tenfold and I’m left in a vortex of physical despair.

Lately it seems that my thyroid levels have gone completely out of whack, leaving me tremendously weak and fatigued, and overall feeling severely unwell. I’ve lost about 25 pounds in the last three or four months, most likely due to endocrine issues and hopefully not because of something more ominous. Endocrine abnormalities can often result in muscle weakness and even muscle wasting, and could account for the fevers that attack me nightly, making it difficult to figure out which symptoms are caused by my neurologic stuff and which might be attributed to my hormonal problems or some as yet undiscovered culprit.

The complicated interplay of my progressing neurologic illness and increasingly abnormal endocrine system makes me an extremely difficult to treat patient, a puzzling jumble that regularly leaves my doctors at a loss, though I give them lots of credit for working hard at trying to figure me out. I often have completely unexpected and sometimes disastrous reactions to medications, and even minor surgical procedures like biopsies or oral surgery can leave me flat on my back for weeks because my hormonal deficiencies leave my body with very little capacity to heal itself. My endocrine issues are insidious, always at work just below the surface, hiding behind and sometimes exacerbating the symptoms caused by my neurologic illness. This forces my physicians to treat me with kid gloves, always aware of the fact that my strange brew of ailments can sometimes turn typically benign treatments into nasty surprises.

The last but definitely not least of my medical challenges is the constant and often excruciating pain inflicted on me by a condition called avascular necrosis, which has attacked my shoulders and hips. Avascular necrosis (AVN, sometimes also referred to as osteonecrosis) is a disorder that causes the bones in afflicted joints to quite literally die, leading them to eventually crumble and break. Although the precise cause of AVN is not understood, the condition is known to be a very rare side effect of steroid use, and it first manifested in me about six months after I had gone through a 10 day course of IV steroids meant to curtail my rampaging neurologic symptoms back in 2006. It’s now thought that I may have been more susceptible to developing AVN because of all of my endocrine issues – the extent of which we weren’t aware of at the time – and the fact that my body was chronically deficient of the natural steroids a healthy endocrine system produces.

These days, roughly 8 years after those ill-fated steroid treatments, I’m left with the equivalent of two broken hips and two broken shoulders, and all of the attendant excruciating pain that goes along with them. I’m pretty good with words, but I’m at a loss to convey just how agonizing this condition can be. On really bad days, which of late have been occurring with increasing frequency, whenever I try to stand or otherwise put weight on my hips the bones beneath my skin can be heard loudly and horrifically popping, cracking, and crunching as they collapse into each other, sounds often accompanied by my own involuntary yelps and howls. My wife Karen often bears witness to these horrific auditory fireworks, and the look of dismay that shows on her face is heartbreaking.

Chronic, intense pain subverts every aspect of life and commands absolute attention, shackling its victims to moments of utter despair. Through the years I’ve learned at times to affect an almost dispassionate demeanor about my neurologic and endocrine problems, temporarily divorcing myself from the situation and taking on the role of observer. The ghastly pain caused by the AVN allows no such contrivances. I now fully understand why they say torture often doesn’t work during interrogations; there are moments in every day when I would readily admit to killing John F. Kennedy if it would just make the pain stop for even just a few moments.

Avascular necrosis is the leading cause of hip replacement in the United States. Unfortunately, due to my neurologic and endocrine issues I’m not a candidate for surgery as I very well might not survive the procedure, and even if I did I wouldn’t be able to do the requisite rehabilitation afterwards. For many years a powerful anti-inflammatory drug called diclofenac helped keep my pain levels tolerable, but over the last several months it has been discovered that the drug was degrading my kidney function so I was ordered to stop taking it. I’ve tried other anti-inflammatory compounds in its place, but most seem be as effective as sugar pills. I’ve been on and off of a variety of powerful painkillers, from oxycodone to Dilaudid to methadone, but even these potent narcotics don’t help all that much and I despise the way they cloud my mind. I see a very sharp and creative pain management doctor, but there’s only so much she can do. The bottom line is I must try to get through my days with two broken hips and two broken shoulders, in addition to my omnipresent and progressive neurologic and endocrine problems.

So, there you have it, my triple whammy, a triumvirate of infirmities any one of which could be absolutely incapacitating in its own right. The fact that I suffer from all three simultaneously and that they form a three-headed beast that magnifies the power of each sometimes leaves me wondering if I might have somehow been hexed, the victim of some ancient curse. I do my best not to indulge in too much self-pity and try to remain as productive as possible, even if lately that hasn’t been very productive at all. At times, though, the reality of the situation crashes through all of my defenses and leaves me shaking my head, wondering just what the hell happened.

Still, each day the sun rises anew, and as long as I’m on this side of the grass I figure I might as well get on with it as best I can. I’ve always vowed that if these things take me down they’ll take me down swinging, but with so many targets to swing at it’s hard to know precisely where to aim. Especially when taking a swing with a weakened, emaciated, and agonized arm doesn’t amount to all that formidable an attack.

I can still spit with the best of them, though, and if that’s going to be the only weapon left to me, then spit I will. Ha!
 

---

On a much more uplifting note, the healthcare website Healthline.com has named Wheelchair Kamikaze one of 2015’s best MS blogs. I thank them profusely, and urge readers to click on the badge below and check out some of the other blogs that made the list. Lots of  great stuff being put out by MS bloggers these days , each with their own unique take on life with multiple sclerosis…

Healthline

Interview With A Kamikaze

I was recently contacted and asked for an interview by fellow MSer Meagan Freeman, who writes the excellent blog “Multiple Sclerosis, Motherhood, and Other Traumatic Experiences: The Life of a Nurse Practitioner With MS”. After checking out Meagan’s blog and making sure she wasn’t part of the vast government conspiracy intent on siphoning off my Cosmic MS Mojo for use in covert attempts to transform reptilian aliens into characters on the “Real Housewives” reality TV shows (you didn’t think those people were actual human beings, did you), I readily agreed.

Meagan asked me a series of eight questions, on topics ranging from what I may have learned from dealing with my disease (that La Paz is Bolivia’s third most populous city – oh, wait, on second thought I think I learned that from the CNN show “Anthony Bourdain’s Parts Unknown”) to my opinion of stem cells (I think they're kind of cute, especially the ones with long whiskers).

I’ve taken the liberty of posting three of Meagan’s questions and my corresponding answers below. To read the full interview, you’ll have to hoof it on over to Meagan’s blog, by (clicking here). While you’re there, be sure to check out some of Meagan’s other essays. She’s a passionate, insightful writer who shares her, thoughts, feelings, and experiences dealing with the beast quite eloquently.

Thanks for your indulgence…


What motivates you on your “bad days,” and gives you the strength to carry on?

Sometimes nothing motivates me on bad days, and I accept that it's okay to listen to my body and do as close to nothing as possible if that's the way I'm feeling. I think it's very important for MS patients to realize this; discretion is the better part of valor, and some days it's okay to just allow yourself to be a person with a horrible disease who just flat-out doesn't feel good. Even on those days, though, it's important to do nothing to the best of your ability, if that makes any sense. If you're going to stay in bed and watch SpongeBob SquarePants all day, that's fine, but try to enjoy the heck out of watching SpongeBob SquarePants all day while you do it, rather than just succumbing to the fear and misery that can become part of life with multiple sclerosis, using SpongeBob as a backdrop while you wallow in the muck. It's okay to wallow every now and then, also, but don't get stuck in the muck, whatever you do.

On most days, though, what motivates me is the knowledge that this day is the only "this day" that I'm ever going to have, this minute is the only "this minute" that I'm ever going to have, and this second is the only "this second" that I'm ever going to experience. Time is everybody's most precious possession, and it gets more precious with each passing moment. Unfortunately, you don't get any rebates or refunds for time you spend miserable; there's no cosmic scorekeeper keeping track of the brownie points you might think you're earning while wrapped in self-righteous unhappiness. I think back on all the time I wasted when I was healthy, tied up in knots about things that ultimately turned out to be completely insignificant– and, boy, I went out of my way to find things to be miserable about – and realize just what a fool I was.

Not saying that you can somehow just sit around grinning like a blithering idiot and smile away your problems, but we do shape our own realities through the filter of our minds, and we can control our emotions, not the other way around. Pop culture often leads us to believe that it's our emotions that rule the day. In reality, nothing could be further from the truth, as your emotions are born of you, not you of them…

How has writing and blogging changed your daily life? Do you find writing therapeutic?

Writing the blog is definitely therapeutic, much more so than any of the MS therapies I've tried. I honestly never thought that more than a few dozen people, mostly friends and family, would ever read Wheelchair Kamikaze, and its success continues to astound me. Going back to one of your previous questions, researching items for the blog and answering email from readers is one of those things that motivates me on bad days. So, yeah, the blog has definitely impacted my daily life, in so many positive ways.

When I left work to go on disability, I wondered how I would fill my days. In all honesty, occupying my time turned out to not be that much of a problem; despite being relatively successful I never really liked working, and the freedom of no longer having to work was kind of exhilarating. I know this isn't the case for many people, but who I was and what I did for a living very rarely meshed as I built my career. The success of Wheelchair Kamikaze really makes me wish I had devoted more time to writing when I was younger, which may have led me to a more fulfilling career. Better late than never, though, as they say. I just wish that I had something a lot more pleasant to blog about, and that there weren't so many people who can identify with my subject matter.

Any advice you would have for those who are transitioning to using a wheelchair?

My best advice would be to just go for it. It took me way, way too long to finally get over myself and admit that I needed a wheelchair. By the time I did so, I was practically housebound, and the disease had definitely gotten the upper hand as far as my having any kind of independent social life was concerned. Believe me, there's a big difference between Armchair Kamikaze and Wheelchair Kamikaze. In the months immediately preceding my getting the mechanical monster, my ability to leave the apartment on my own had dwindled to almost nil. The day I got my wheelchair the world was once again open for business, so to speak, and suddenly I was able to fill my days with adventurous urban excursions around New York City.

I vividly remember the day my chair was delivered. After the wheelchair tech left, I sat across from the chair giving it the stink eye, having a hard time accepting the fact that this thing was now basically a part of my broken body. Then the 12-year-old boy that lies just below the surface took note of the fact that the thing has wheels, motors, and the joystick. I dragged myself over to the chair and sat down, and was soon whizzing around my living room, recklessly smashing into and upending coffee tables, sofas, and chairs.

That evening when my wife came home she insisted we go out for a "walk", a notion that had me horrified. Me, in public, in a wheelchair?!? Good heavens, no! With a bit of cajoling, my wife soon won out, and we were out on the streets of Manhattan, me with my backside firmly planted in a rolling electrical beast. I was certain that the attention of every pedestrian in the city would be riveted upon me, but instead nobody seemed to notice. Truth of the matter is, most people are so self-absorbed that they barely give any attention to anything outside of their own heads, and they could care less that some guy in a wheelchair is sharing the sidewalk. Gotta say, the moment I realized this was one of the few times I've ever been grateful that narcissism plays such a large role in human psychology.



To read the rest of the interview, please (click here) to go to Meagan’s blog. Thanks.