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…

An Ugly Profile

As every man, woman and child over the age of six living in the United States must be all too aware, the latest courtroom drama to grip the nation has been the trial of George Zimmerman, which came to its conclusion this past weekend. Unlike many of our previous “trials of the century”, which usually feature lurid sexual misconduct, child murder, or the involvement of a celebrity, the Zimmerman trial focused attention on some of the most troubling fissures that threaten to fracture American society, including racial bias, the prevalence of handguns, and our well-earned paranoia regarding violent crime.

A prominent issue in the Zimmerman case was profiling, specifically racial profiling. But profiling can take many forms, and as a disabled person this aspect really struck home. More on this a bit later, but for the sake of international readers who may not know the specifics of the case, please allow me to provide a quick summary.

In February 2012, black teenager Trayvon Martin was walking back to his father’s fiancé’s townhouse at about 7 PM in the evening, after a trip to a nearby convenience store. The Florida community he was walking through had recently been the scene of several burglaries and home invasions. A white resident of the community, George Zimmerman, a volunteer in the neighborhood’s community watch program, saw Martin walking in the dark through a light drizzle. Mr. Zimmerman, who spotted Martin from his car, thought the recently turned 17-year-old looked suspicious and called local police dispatchers, who told him police were on their way and advised him not to follow Martin on foot, advice which Mr. Zimmerman, who was armed with a concealed handgun, ignored.

After following Martin for several minutes, an altercation broke out between the two subjects, during which Mr. Zimmerman suffered a broken nose and abrasions on the back of his head. According to most accounts of the struggle, including Mr. Zimmerman’s, Martin wound up straddling Zimmerman on the ground and was getting the better of the fight. Zimmerman said that at this point Martin saw the gun holstered on Zimmerman’s hip, and told Zimmerman that he was going to kill him. Zimmerman then unholstered his weapon and shot Martin at point-blank range through the heart. Trayvon Martin died within minutes.

Initially, local police declined to arrest George Zimmerman, saying that his actions were justified on the grounds of self-defense. After the case reached public attention and generated a national outcry, Zimmerman was arrested and charged with second-degree murder. After a trial that lasted approximately 3 weeks, he was found not guilty, a verdict that has ignited heated debate and public protests throughout the nation.

Naturally, I have strong opinions about the Zimmerman case, but as I’ve largely tried to keep politics out of this blog, I’ll refrain from airing my opinions here. Instead, as I mentioned previously, I’d like to use this tragic incident as a catalyst to discuss the issue of profiling, the practice of making assumptions about a person’s character, intelligence, or intentions based solely on their appearance. Perhaps the only thing that seems certain about this case is that Zimmerman profiled Martin, assuming he was “up to no good” based solely on the youth’s appearance. Tragically, it turned out those assumptions were wrong, and ultimately resulted in the death of a 17-year-old who was simply in the wrong place at the wrong time. Or, more correctly, in the right place at the wrong time.

Why discuss this on a blog devoted to issues associated with multiple sclerosis and disability? People with MS and other disabling illnesses who show the physical effects of their disease often find themselves the subjects of profiling, whether they walk unsteadily, use canes or walkers, or are reliant on wheelchairs. Assumptions are often made by members of the general public based solely on the appearance of the afflicted, and those assumptions can often multiply the pain and suffering caused by the disease itself.

There has long been stigma attached to physical disability; the severity of this stigma varies from culture to culture but certainly persists to this day even in more enlightened societies. I know many MSers with relatively mild disease who struggle mightily to keep their illness a secret in the workplace, for fear that knowledge of their ailment might derail their careers or even get them fired. Patients with more apparent manifestations of the MS, such as balance and gait issues, have found themselves accused of alcoholism or illicit drug use. Those of us who find ourselves in wheelchairs often also find ourselves ignored by the population at large, subject to ignorant or condescending comments, and sometimes even treated as complete imbeciles. Folks whose disease affects their speech are often automatically assumed to be suffering from mental retardation, the notion that a perfectly fine mind may be hidden behind their inability to enunciate never even occurring to many in the healthy population.

How can I be so sure of all of this? The answer is simple, and embarrassing. Back in my healthy days I was sometimes guilty of just such profiling, unconsciously making assumptions about the disabled based on preconceived notions that had no basis in reality. I clearly remember seething at the wheelchair reliant person who had the audacity to hold up my commute to work while the driver of the public bus I was on took the time to operate the vehicle’s wheelchair lift. How dare they travel during rush hour, didn’t they know that normal people need to get to work! Looking back, I cringe at the memory of my sometimes dumbing down my speech in the presence of people with physical disabilities, as if somebody possessed with faulty limbs was also automatically possessed with a deficient brain. Turns out the one with the deficient brain was me.

Even now, when I’m all too well versed in the trials and tribulations of the disabled, I sometimes find myself falling victim to my own subconscious preconceptions. A few years back I met a man who was active on one of the online MS forums in which I participate. In our written give-and-take on the Internet, I knew him to have a keen intellect – astute, sharp, and witty. When I finally met him in person at a large MS symposium I could barely disguise my shock when I found he could barely get a word out, his speech halting and slurred. Despite the fact that I knew that this man had a fine mind, I automatically found myself simplifying my vocabulary and talking in a louder voice, so strong and ingrained were my mistaken inclinations. I’m ashamed to admit that I was so disquieted by the situation that I cut our interaction short, behaving in a way I regret to this day.

George Zimmerman’s profiling of Trayvon Martin ultimately resulted in an innocent teenage boy’s death, an outcome that all can agree was tragic, whether or not they believe the jury’s verdict to be just. Though the profiling experienced by the sick and disabled isn’t likely to result in physical death, the injuries inflicted to sense of self and ego can at times seem more hurtful than a physical blow. The emotional maelstrom experienced by patients dealing with chronic disabling diseases is and of itself a difficult storm to weather, and the added indignities that are sometimes heaped upon them by an indifferent and ignorant public can multiply the emotional distress of such illnesses exponentially.

Unfortunately, there are no easy answers when it comes to eradicating the problem of profiling, whether that profiling is based on race, gender, religion, or physical condition. As my own experiences illustrate, perhaps the first action we should take to eliminate the poisonous practice of profiling is to look within. An open mind and an open heart are tremendous benefits not only to the person who possesses them, but to all within their sphere of influence as well.

Trayvon Martin, RIP.