Naturally, dealing with a progressively disabling disease for the last 10 years has impacted the way I think about age and aging. I read somewhere that inside every 50-year-old there is an 18-year-old screaming "what the hell happened?", and though I’m sure that sentiment is true for just about everybody, it’s especially resonant for those dealing with something as completely unexpected (and dreaded) as a debilitating chronic illness. Experiencing my 50th birthday while sitting in a wheelchair is definitely not something I ever pictured back when I was dreaming of rock 'n roll glory and earning a degree in film. Polishing my prolific collection of well-earned Oscars or platinum records, yes; firmly planted half paralyzed in a mechanical monster, certainly not. Better, though, to be planted in a wheelchair than planted in the ground. As Dr. Einstein said, it’s all relative.
Way back in the late summer of 1963, I was born three weeks prematurely via cesarean section, a circumstance necessitated by the type I diabetes that struck my mom while she pregnant with me. Unlike the majority of gestational diabetes cases, my mother’s never resolved, and she’s been injecting herself with insulin multiple times a day ever since. When I was surgically snatched from the womb it was discovered that my lungs were completely filled with fluid, a situation quite dire. Just a few weeks earlier, President Kennedy’s wife Jackie had given birth to a baby boy suffering from the exact same condition. Little Patrick Kennedy died two days later.
My parents were acutely aware of the tragic circumstances of the Kennedy baby’s death when the doctors informed them of my condition, stating that I had only a 50-50 chance of surviving my first 48 hours. I was whisked away and placed in an incubator before my mom even had a chance to hold me. My dad, on leave from a training stint in the National Guard, was ordered to return to his base that day, despite not knowing whether or not his firstborn would make it through the night. A grim circumstance for sure, but I came out on top of my very first scrap, beating back an early demise by fighting for my first breaths. Three days later I was out of the incubator and finally placed in my mom’s warm embrace. Such is the randomness of the universe; a President’s son dies, and an anonymous little Jewish kid in the Bronx survives. It’s nice to know that I have a history of beating the odds, and leave it to me to make such a dramatic entrance onto the stage of this great big theater of the absurd.
In a sense, getting diagnosed with MS led me to a sort of rebirth, as the course of my life was altered so dramatically as to cleave it in two. There was part one, which spanned the time from my birth until my disease put the brakes on the running narrative of my existence, around the time I was forced to “retire” and go on long-term disability. Thus started part two, a reality that grows increasingly divorced from that previous incarnation, so much so that I can now look back on part one as an entity in and of itself, a story with a beginning, middle, and end. As such, from my new and somewhat unfortunate vantage point – a view filled with unexpected perspective – I can examine my old life like a biologist probing a particularly enigmatic specimen, teasing it apart in an attempt to discover the mysteries held within. I can trace the complicated web of experiences, circumstances, decisions, and happenstance that coalesced to form the story of my life, the subtle twists of mind and fate that led me to travel one path while bypassing an infinite number of others. If I had made a different decision here or there, if I had perhaps not lingered for one more drink or to furtively admire a pretty girl, or had not allowed fears of failure and success to exert their undue influence, might the path then taken have led to an entirely different destination, or did all roads invariably lead to Rome? Was I at the helm of the ship of destiny, or at the mercy of the cosmic winds?
In steadily untangling the jumbled knot of fate and self-determination which comprised that now extinct existence, I can in retrospect readily recognize the all too many wasted moments pregnant with possibility, can identify errors great and small made along the way, and take satisfaction in the many things that went right. The one thing I cannot do is change any of it; I can roll it around and dissect it ad infinitum, but the circumstances and outcomes of my old life will always remain frozen in time, like 200 million-year-old insects visible in pieces of amber, fascinating to gaze at but impossible to resurrect.
And, now, what to make of this new incarnation, this part two, so unwanted but also filled with its own peculiar brand of wonder and surprise. Certainly, many aspects of it are excruciating: the disease itself, the gradual loss of physical function, the sheer helplessness in the face of this progressive beast that gnaws away at me, the frustrations with a medical establishment that is shockingly ill-equipped to slay it. Despite these negatives, in a bizarre twist of fate the disease has bestowed upon me a freedom few adults ever experience. I am no longer bound by the shackles of work (I guess you can tell how much I loved working), and because of this I've been granted the gift of time, most of my days spent in a manner of my own choosing. Certainly, the disease imposes limits on my menu of choices, but even within those boundaries, whose borders are ever contracting, I’ve been able to pursue long sublimated passions, passions that had fallen victim to the realities of the workaday world. Writing, photography, a fascination with science and research, a need to communicate, all of which have gratefully come together on these virtual pages, reflections of parts of me that I had almost forgotten existed.
To think that people actually read these words and appreciate my photographs, well, it just about defies belief. This part two, this second act brought about by the realization of some of my worst fears, has graced me with the privilege of making friends in faraway places, of expressing thoughts and emotions that I’m told bring comfort to many and thus bring comfort to me, of hopefully helping to empower and offer distraction to my fellow wanderers along this road that none of us would’ve ever chosen to follow . Can this curse then, at times, be seen as something other than a vulgarity? Kipling wrote that triumph and disaster are both impostors, two sides of the same coin, and a keener observation was never made.
I look back on my 50 years and acknowledge my regrets while also celebrating my achievements. I revel in the rich tapestry of experiences and episodes I was lucky enough to be part of that will always make me smile. I’ve flown in the Goodyear blimp, come face-to-face with an apparently not very hungry 10 foot bull shark while snorkeling, won $14,000 in a state lottery, hit a hole-in-one in golf. Far more important than any of those moments, though, are the friends that I’ve made along the way, a precious few that have been part of my life for decades, others that have come and gone, but all of them more dear than any fleeting moment of experience ever could be. I thank the heavens for a wife who is the sweetest soul I’ve ever known. I mourn the friends and family that have passed, from 18-year-old Kimberly, her life cut obscenely short so many years ago, to David, the smartest man I’ve ever known, to The Greek from Detroit, my comrade in arms, to my grandmother, who even at 97 years old could make me laugh like no other. I miss them all, and will for all my days.
My 50th birthday provoked in me more introspection then any of the other milestone birthdays I’ve passed along the way, none of which ever really fazed me. Being afflicted with an unrelenting illness makes pondering the future a daunting proposition, and yet within me still resides a bubbling fount of hope. One of my oldest friends once described me as the most optimistic pessimist he’d ever known, and I think he got it right. Though I can often be a glass half empty guy, I’ve always expected to find that other half glass somewhere just over the horizon.
The disease that sliced my life in two has taught me that no matter how astute you fancy yourself, you never know what’s just around the next bend, and whatever comes into view is neither good nor bad but what you make it. As any good poker player knows, the key to winning big is not the hand you’re dealt but how it's played. There is infinite wonder in the world and in the people who occupy it. In one hundred years, the world will still be here, but all of us will be gone. No sense taking yourself too seriously, then, because we are, in the end, all just ephemera. Rejoice in that notion; nothing about us is ever written in stone, except our name on a marker that we’ll never see. Even after 50 years I’m still a work in progress, and in that sense, perhaps there's still a little part of me left in that incubator I was placed in all those years ago.
Here's a great old song that expresses one of the most important keys to contentment that the past 50 years have taught me: Be thankful for what you've got… I love the photos in the video, too, which remind me of the good old/bad old New York City that I grew up in. For those who may not be aware, the subways in NYC haven't been covered in graffiti for about 25 years.