My Uncle Paul was a good man. He was the kind of guy that New York City used to mint by the thousands, before the high finance types took over and used their wads of cash to smooth over the wonderfully hard edges that defined this once gritty city. Paul was a quickwitted, happily blue-collar, salt of the earth man’s man, who exuded a nonthreatening air of self-confident toughness that couldn’t hide his huge heart. He loved people, and was a virtual encyclopedia of jokes and one-liners, which he delighted in telling in staccato fashion, one right after another, until he had you laughing so hard that all the jokes blurred into one, making it impossible to remember any individual jest. He laughed just as heartily as his audience, with a big bright smile so infectious it could have been used to solve the energy crisis.
Paulie, as I called him, was a good husband and provider, and although never a rich man always kept my aunt and their three kids from wanting. An unabashed character, he rode motorcycles back in the 50s and 60s, when they were still emblems of danger and rebellion, and not the instant antidote to a midlife crisis or rideable bling that the wonders of modern marketing have turned them into today. A favorite family legend dates back 50 or 60 years, to a time when horse-drawn carts were still used to sell wares on the streets of the Bronx, where my mom’s side of the family grew up. As the story goes, a horse broke loose from its cart and started galloping down the crowded city streets. Paul, a kid brought up on and by those streets, instinctively jumped on the back of the horse as it ran by, and somehow managed to calm and then stop the beast. I’m sure as he dismounted he entertained the cheering crowd that surrounded him with a series of equine one-liners, a twinkle in his eye and a smile plastered to his face and the faces of all those within earshot.
In 1997, two of Paul’s now adult kids, a daughter and a son, died of AIDS within five months of each other, a tragedy so horrendous my mind still reels when I think about it. How brutally unfair, how sadistically abysmal was this twist of fate, a tragedy that makes a mockery of any naïve notions of a just universe. At the time I was living in Florida, and hadn’t seen Paul or my cousins in maybe a decade, and still the news hit me with a blow that bordered on the physical. The emotional storm Paul, my aunt, and their surviving daughter had to weather is, I think, impossible to comprehend, yet when I moved back to New York a few years later and became reacquainted with my Uncle, I was greeted with that familiar fusillade of jokes and that shining bright smile. Still, I could sense the gaping wounds deep inside my Uncle Paul’s soul, the presence of my prematurely deceased cousins always in the air, adding a bittersweet sense of melancholy to each encounter, my uncle’s laughing eyes unable to conceal the hurt beyond healing held within. Still, somehow, Paulie persevered, never publicly displaying any bitterness or despondency, my love and respect for him ever growing.
About six years after I returned to New York, Paul was diagnosed with cancer, and was dead within a year. I was three or four years into my MS diagnosis at the time, and already my mobility was severely hampered, but of course I attended the funeral of this man for whom I harbored such boundless fondness. While standing unsteadily at his gravesite, watching his casket as it was slowly lowered into the earth, I thought about the arc of his life, and couldn’t help but picture Paulie arriving at the pearly gates, breaking up the gatekeepers with some impeccably timed heavenly humor, and then purposefully asking them, “Now, please, please tell me – what the f*^k was that all about?”
I often think of my Uncle Paul when contemplating the twists and turns of my own life. We humans (I’m assuming everybody reading this is human) have a tremendous need to try to make sense of things, to seek out order amidst the chaos of existence, from seeing giraffes in clouds or holy visages on pieces of toast, to trying to put the whole of our lives into some sort of logical context, mentally spinning and twisting the puzzle pieces of our pasts in an attempt to make them pave discernible paths to our present. This is especially true when we hit periods of misfortune, and now, despite my efforts to stay rooted in the present, I’m left with plenty of time on my hands courtesy of a crippling disease. Despite myself, I find it almost impossible to not look back and try to sort it all out, as if by identifying just where things went south I might somehow mystically resolve my present predicament, or if not fix it then at the very least explain it. Although I do recognize that there are no real answers to be found, at times I’m still compelled to stare deeply into my past, like a voodoo priestess gazing into a bowl of chicken entrails, and try to comprehend how the path of my life led me to this twilight zone existence, a man forced by disease to gradually watch himself disappear.
There are those who live very self-directed lives, who from a young age somehow knew what they wanted and how to make it happen. I was not one of them. Having now been chronically ill for over nine years, I’ve had a chance to observe some of these strange creatures firsthand. Many times, when in a medical setting, I’ve been shocked to discover the young person I’m talking to isn’t a volunteer or some kind of administrator, but an actual MD, doing their residency at an age at which I was still walking around with all the direction of a fart in a windstorm, counting on some tremendous stroke of luck to turn me into a rock star, actor, or writer. As a young man I suffered from an acute case of HUMA (Head Up My A$s) syndrome. Yes, I was the lead singer of punk rock band, and yes, I did do some writing, but I never did the heavy lifting necessary to turn dreams into reality, instead relying on serendipity to deliver me to what I was sure would be a star-studded destiny, one that would bring the recognition I craved along with the ability to live life on my own terms.
In the wee small hours I often can’t help but time trip back to periods of happiness and also to those of turmoil and discontent, wrestling with just how I journeyed from those places to my present reality. My life can quite tidily be divided into several distinct sections, a chronology of locations and circumstances that neatly cleaves along the lines of the decades of my existence. My childhood and adolescence, during the 60s and 70s, were spent in New York City, Boston played host to my college years and Bohemian post college days during the 1980s, the 1990s saw me become an accidental Floridian and then a reasonably responsible adult, and the dawn of the 21st-century found my path taking me back in New York City, where at first things seemed to almost miraculously fall into place, my career blossoming and a wonderful woman agreeing to be my wife, only to hit an unexpected and treacherous detour in the form of a thus far incurable creeping paralysis.
Along the way I went through many changes, experienced triumphs and disasters, and committed deeds worthy of pride and others of regret. I met terrific people, made lifelong friends, and also encountered my share of liars, cheats, and flaming a$$holes. The precise path that winds through and connects all of the disparate elements of my history is paved with my own willful acts but also generous amounts of luck, both good and bad, a tidal wave of experience cresting to form the person who I am today. I suppose much the same can be said of almost all people’s lives; though the details and exact mix of ingredients may change, we all share the tragedies, victories, banalities, and scintillations of being human.
So, is there any sense to be made of this? Was there anything in Uncle Paul’s life, or my own, that offer any explanations at all? Did anything in my past presage the current troubles in which I find myself? For much of my life I was almost comically hypochondriacal. Was I perhaps not so much neurotic as prescient? Or is this just another example of the preponderance of chance in our lives; give me a room full of 100 hypochondriacs and I can guarantee that eventually almost all of them will find their worst fears realized.
As a young man, full of piss and vinegar, I loudly proclaimed that I would never succumb to the mainstream 9-to-5 workaday world, which I eventually and begrudgingly did, a fact that I never quite reconciled myself to despite my relative success. But MS put an end to my working life, and gave rise to this blog, which in turn has in bizarre fashion turned many of my youthful pretensions into reality. If, when I was 23 years old, a gypsy fortune teller had told me that in 2012 I’d be living in a high-rise apartment building next to Lincoln Center with my beautiful and loving wife, that my words and pictures would be seen and read by people near and far, that I’d sleep and wake to nobody’s schedule but my own, and that my thoughts might actually impact the lives of others, I’d have jumped for joy, believing that all my dreams would come true. Of course that fortune teller would have left out one tiny detail, an asterisk that would transform dreams fulfilled into, well, if not quite nightmares then something treacherously close.
One can drive themselves to madness constantly searching for answers to questions that might not even be questions but simply constructs of that strange human predilection for finding patterns in the sand. In the end, all we have is the present, and the best use to be made of the past is to learn from its hits and misses to how make the most of the moment now occupied. The future, for the sick and healthy alike, has yet to be written. We can exert our influence on it, but inevitably a large part of our fate is out of our hands, and just as it’s a fool’s errand trying to make sense of the present by ruminating over the past, it’s equally unwise to try to foretell the future based on current circumstances. The only sense to be made is that there is no sense; my uncle didn’t deserve his ill fate but neither does the son of a billionaire deserve the silver spoon they are born with. In the end, all of my pondering has led me to one conclusion, that we’re all just gamblers taking part in a giant crapshoot, and the best we can do is try to nudge the odds in our favor, blow on the dice, and let them roll…
POSTSCRIPT: As I was finishing this essay, the Olympic closing ceremonies were on TV in the background, and I suddenly heard this song filtering through. Perhaps there are more things in heaven and earth than are dreamt of in my philosophy…
This article was originally published on Marc’s website on 08/12/12 and is being featured on MultipleSclerosis.net with his permission.