Sunday, December 31, 2017

New Year’s Eve Through MS Eyes

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

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

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, and my grandmother, aunt, and I would watch Guy Lombardo and his Royal Canadians playing old timey big band hits for the well-heeled crowd at the Waldorf Astoria Hotel, broadcast live to our ragged black and white console TV. We didn’t have much money and lived in a building in the Bronx that was closer to a tenement than a high-rise, but our lack of means did nothing to diminish the excitement and expectations of the evening.

Though I was 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. Then, using big spoons as drumsticks, we burst into the hallway of our apartment building, banging with joyous intensity on those old, scarred cooking implements, creating a raucous racket and shouting at the top of our lungs “Happy New Year’s!” Most of the other residents of the building joined us in creating a jubilant and low rent but somehow defiant cacophony, delirious and intoxicating stuff for the very young me. I daresay that for those few moments we had a lot more fun than the swells at the Waldorf.

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

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

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


  1. You crystallize my feelings with great skill – the ambivalence of living with advanced PPMS. Happy new year Marc.

    1. Thanks for the kind words, and a happy new year to you too. Hopefully, 2018 will bring unexpected and wonderful things…

    2. I have multiple sclerosis. But I love wheelchair Kamikaze blogs

  2. HNY anyway. It did suck 2 yrs ago and it still sucks. I try to find awe in the landscape where I live, which is indeed awe inspiring. When I first saw NYC, I was just the other side of my dx and could only return once. It seems like such a long time ago. I feel you would have been the perfect guide if the wheelchair had been your only obstacle. I'm happy you still live there.

    1. Glad that you can appreciate your awesome landscape. Yes, I am happy to still be living in NYC, even if I can hardly partake of its many wonders these days. In nicer weather, simply people watching is a fascinating activity here in the city. Happy new year!

  3. It's difficult to keep pushing forward when the truth is paradoxical. I believe cognitive dissonance was the actual original sin.

    I hope the new year is markedly better for you, Marc, and everyone else navigating this mercilessly sadistic disease.

    1. Thanks for your well wishes, and sending some back your way. I suppose, in a way, cognitive dissonance helps keep us going, even when the odds maybe so long as to be microscopic. Hope knows no reason.

      Let's hope the disease treat us all a bit more gently this year.

  4. I found myself so relaxed on new years eve this year. I finally had a good excuse not to go to a restaurant, bar, or party on New years. I think new years in the usa is stupid. I mean how dumb do you have to be to stand in 4 degree temperatures for hours to see the ball drop and that is after going through metal detectors and searches and stuff. So being in a relaxed mood I made the resolution to not worry about the ms so much this year...wonder how long this will last...

    1. Resolving not to worry about ms is a good resolution, IMO. I myself resolved to get back into my meditation practice. I think our resolutions kind of go hand-in-hand.

      Just FYI, I don't know any native New Yorker, or even New York City resident, who has ever been to Times Square to watch the ball drop on New Year's Eve. Literally none. The entire square is filled with tourists at midnight on December 31. Real New Yorkers stay as far away from Times Square as possible on that night. And on most nights, for that matter.

      Advice to those visiting New York: please venture outside of the usual tourist areas like Times Square. They don't represent the "real" New York. Don't go to any chain restaurants, you can go to an Olive Garden anywhere in the USA. Instead, try one of the thousands of neighborhood joints that dot the city. You'll have a much better time, and a MUCH better meal…

  5. You inspired me to write the following poem, published today on my blog.

    Ode to New Year’s Eves

    Others celebrate
    the promise of a blank slate.
    I watch from afar.

    So am I jealous?
    You bet your sweet ass I am.
    I want to party.

    As I yearn to grasp
    hope’s seductive promises,
    loss appears instead.

    My apologies, Marc, if my take was too dark. Yours was brilliant.

    1. My apologies again. As I had cited you as inspiration, and I did not want to create the wrong impression about what you had written, the second line of the second verse is changed to: "I most definitely am."

    2. Judy, so glad that you are writing poetry again. The Internet is a better place for it.

      I appreciate your fastidious mess in changing that line in your home, but it really wasn't necessary. I'm definitely a "you bet your sweet ass" kind of guy.

      Sending you the warmest of well wishes…

  6. Hi Marc, your story touched me greatly and made me appreciate the "simple" things that I have that I take for granted.

    Have you heard of this new MS drug called, "Ocrevus"? This drug showed great success rate so if you haven't already, maybe it's worth looking into.

    I hope you have a Happy New Year and an amazing 2018.

  7. Best wishes for this new year Marc. Nothing can be taken for granted, anything our body and mind are still able to do, I consider them a blessing.
    So for 2018, wishing you the best health possible, endurance, courage, patience, peace of mind, inspiration and love.
    Thank you for being there and writing your great blog.
    Kind regards from France

  8. Not sure if you've heard of Dr. Terry Wahls but she used to be in a wheelchair and was able to put her multiple sclerosis into remission mainly through changes in her diet. Here's a link to her website.
    Best wishes

    1. Most MS patients have heard of Ms. Wahls, and would be willing to pursue almost any diet to put their disease process in remission. While it is clear that Wahls means well, she has also used an anti-cancer drug.