In his 1977 Academy Award-winning cinematic masterpiece Annie Hall, Woody Allen explains his belief that the entire population can be broken down into two groups, the horrible and the miserable:
Yes, the horrible are "terminal cases, blind people, the crippled…", and the miserable are everybody else, Woody advises Annie, so you should be happy to be miserable.
When I first saw Annie Hall, decades before I was fated to join the ranks of the horrible, Woody's analysis of the human condition seemed perfectly on target, so much so that I wanted to scream "Yes!" at the screen when I first heard this philosophy so succinctly put to words. Annie Hall is a bittersweet comedy, though of the most illuminating sort, and Woody's words were meant to be sardonic, but the teenage me found them to be in perfect sync with my own observations about our society and the world at large. It did seem to me, as Henry David Thoreau wrote, that "most men lead lives of quiet desperation, and go to the grave with the song still in them."
Yes, it's safe to say that I wasn't the most happy-go-lucky young man, and the divide between the miserable and the horrible fit well with my cynical and angst ridden personal philosophy. Not that I was a sad sack, mind you, as I was always equipped with a keen sense of the absurd and thus a lively sense of humor, but looking around me I saw a world filled with adults who to my eyes had long ago forsaken what they wanted to do for what they had to do, and who were so anesthetized by the repetitious machinations of society that this tremendous sacrifice barely even registered with them.
So, by Woody's definition, I would just have to be content with being one of the miserable. The thought of somehow one day becoming one of the horrible was, well, just too horrible to contemplate. The idea of having to deal with severe physical infirmity on top of the emotional grind of everyday life would be simply unendurable. Yet, now that I find myself firmly in the ranks of the horrible, I'm less miserable than when I was one of the miserable. How strange, and how completely unexpected.
Back when I was lucky enough to be one of the miserable, I did a pretty good job at embodying that designation. During the first decade or so of my adult existence, my determination to not succumb to the drudgery of 9-to-5 led me to live a rather Bohemian existence. I spent several years as the lead singer of a punk rock band, working part-time jobs to earn just enough cash to keep a roof over my head and a belly at least half full of food (the other half taken up, more often than not, by vodka and beer). I cultivated the uncanny ability to be able to identify the one female in a crowded room who would be most toxic to me and then fall madly in love with her, a surefire ticket to misery. Though I was living a life of relative freedom and the potential for having a grand old time abounded, my natural proclivity towards anxiety and depression kept me in a nearly constant state of emotional turmoil.
Soon enough, as a got older, responsibility started creeping in, and I was forced to emerge from the nocturnal underground and try my hand at making a living. Somewhere along the line I'd earned a degree in Broadcasting and Film, and an odd confluence of events found me living in Fort Lauderdale, a very accidental Floridian. I was a stranger in a strange land, and with few remaining options, I put my degree to use, finding work in the production studios of the local cable television company, a humble start to a nearly 20 year career in the TV and video production business.
Through a series of ever increasingly responsible jobs, I found some measure of professional success, but always harbored the gnawing feeling that I had somehow strayed very far from my path. My youthful dreams of living large as a rock star or writer faded into the mists of time in my rearview mirror. Though I could soon enough afford to placate myself with fast cars and shiny objects, I felt an increasing sense of suffocation. I eventually wound up in a job that required me to wear a necktie (ack!), and I vividly remember the pit I felt in my stomach each morning as I stared into the mirror watching myself literally tying a noose around my neck.
Somewhere along the line I'd blindly capitulated and crossed that line between "want to do" and "have to do". Despite my quiet desperation, I couldn't see a way clear of my situation. Now there were bills to pay, a lifestyle to be maintained, femme fatales to be entertained. I was stuck in a prison of my own making, definitely one of the miserable, but still thankful to not be one of the horrible.
And then, one day, I was. I'd been back in my hometown of New York about four years, and was working in a high profile job that I actually didn't hate (and one for which I did not have to wear a necktie). Having finally learned my lesson, I married a wonderful woman, and settled into a very pleasant existence. Still, I harbored the unsettling feeling of somehow being false to myself, as if I'd been shoehorned into living someone else's life. During my walking commute to work, I'd constantly fantasize about a life spent writing, or taking photos, a life full of want to do's rather than have to do's.
One cold day in March 2003, while walking my beloved pooch Stella, I realized I was limping, my right knee buckling with each step I took. A few doctors’ visits and an MRI later, and I soon found myself being informed that I had multiple sclerosis.
Welcome to the horrible.
As it turned out, my disease was of the progressive type, and aggressively progressive at that. Less than four years after my diagnosis I was forced to stop working, and about a year after that a wheelchair entered my life. If you had used my past as a predictor of how I'd react to this dreadful new reality, the projected outcome would not have been pretty. Had I been told before my diagnosis of what was about to come, and was then given the choice to either plunge forward or gracefully check out, I might very well have chosen the latter. But somehow, despite my forced migration from the miserable to the horrible, I not only survived but thrived, surprising not only myself but also those who knew me best.
Although MS (or whatever it is, as my diagnosis is more up in the air than ever) has imposed ever-increasing limits on my physical abilities, within those limits I've found a kind of freedom, one that was sorely missing when I was healthy and a so-called productive member of society. Looking back from the vantage point of the horrible, I can see that the life of the miserable is filled with an almost limitless number of options, so many that they can become paralyzing in and of themselves, as choosing one closes the door on so many others. The result can be a kind of blindness, a resignation to keep following a familiar but ultimately unsatisfying path.
Now that I am partially physically paralyzed, and my options limited in a very tangible way, I find in some ways that my existence is easier to navigate. Living within some very real boundaries in fact affords a certain amount of freedom, as the structure imposed by a debilitating illness invites one to use that structure as the skeleton upon which to build a new and different life. I have been freed from the expectations of the working world, a world in which we are often defined not so much by who we are but what we do. Apart from that world, I am free to define myself, albeit within the limits imposed by my disease, by what exists within. Thus, who I am, rather than what I am, takes on the utmost importance.
Just as a gifted poet limited to the strict rules of haiku can create combinations of words that have the power to take the breath away, attempting to live a meaningful life within the strict confines imposed by illness has allowed me the chance to rise above my previous foibles and weaknesses, to strive for some measure of triumph in the midst of mounting adversity, to try to be a better me. That effort has allowed me to rediscover parts of myself that had long ago withered from lack of attention, and to reconnect with the person I was before the burdens of adulthood and its attendant responsibilities had tugged and twisted that fresher version of myself almost beyond recognition.
Make no mistake, I am not saying that this damned and detested illness has conferred upon me any benefit that I could not have conferred upon myself while healthy, given a dose of mental strength and fortitude that I was lamentably unable to muster. This illness, any chronic illness, is a curse, a vile and venal monstrosity that is the very definition of horrible. But despite this beast attempting to consume me, I can endeavor to rise above, to mindfully claim each moment as my own, and to control my emotions rather than have them control me, thereby creating my own reality and snatching it from the gaping maw of illness.
Sick or healthy, miserable or horrible, we all have but brief lives to live. Those of us with the misfortune of being saddled with illness are only too aware of this fact, our mortality laid raw before our eyes as our illnesses insidiously do their dirty work. This keen knowledge of the frailty of existence can and should be used as a great motivator to make the most of each day, living each and every moment to the best of your ability. This isn't to say that every sick person has to accomplish some kind of daily miracle; there are some days when the best of my ability amounts to lying in bed watching the Marx Brothers. It is often enough to acknowledge that time is fleeting, as my weakening left side constantly reminds me. While this knowledge can and does terrify, it can also fortify and strengthen the resolve to make damn sure that although illness may claim my body, it can never claim that spark of life that animates it and makes me Marc.
The horrible and the miserable. Turns out we're all in the same boat. Might as well start rowing…