Monday, December 31, 2018

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!”…

8 comments:

  1. Hi Marc, I have read this every year you posted it and I have ppms too so I have some idea how you feel. My diagnosis came a little later than yours 2010 but I had symptoms before that. Ppms is about the same whoever you are isn t it? Anyway I am with you and I appreciate your words greatly,that slowish slide of abilities described so well. Keep going dear man, you have your wife with you to kiss on New Years Eve as I have mine (husband) which is surely a great comfort when life is hard to take.

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  2. I just wrote a great reply to this and then lost it. Sorry. Hi anyway, basically I appreciate you!Xx

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  3. Marc, you truly have a way with words. I have rrms, 15 yrs down that road, and mostly in a wheelchair these days, and you hit the nail with this

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  4. Marc! good to see a post, been worried about you!
    i've read this post every year and it always gives me a sigh. i was diagnosed but a short 4 years ago (had symptoms quite a few years before, ofc, but it is what it is), but i've already lost so much to this monster of a disease. i can do nothing but kiss my Husband and lean on Him for support when i need to. Which is often. But thank you for your posts, hun.

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  5. Oh Marc, this really gelled with me. Every day I see people living their lives to the full, walking unaided, lifting a glass to their mouth with one hand and spilling not a drop, and wonder if it occurs to them how lucky they are. But I was like that, never gave it a thought ... so let them enjoy their obliviousness. All the best possible to you and your wife for 2019.

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  6. Wishing you all that is prayed for in 2019. Your words always inspire this journalist-photographer who ended a career through MS - SPMS now. I try to aspire to be a wheelchair warrior even if everyone is safe with my slow-driving around the house.

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  7. Hey Bub, Good to hear from you. I've been thinking/worrying about you a lot lately. Hang in there and Happy New Year!

    Charlie

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