I’ve come to realize that in some ways my illness has had a similar effect on me. As my creeping paralysis has progressed, leaving me less and less able to take part in the ordered chaos of the world at large, I find myself increasingly alienated from the life I once knew, my space in the existence I used to occupy now almost totally erased. I’m still here, of course, part of the world but also apart from it, more spectator of than participant in the game of life. The never ceasing whirl of activity outside of my metaphorical and physical windows continues on, but the threads that once tied me to the self-perpetuating clamor of everyday life have largely been cut, putting me in a sort of conscious state of suspended animation. The gears of the world grind on, but more and more, they grind on without me.
The most tangible examples of this are the changes that have come to the industry in which I once earned my living. I spent 20 years building a career in TV and video production, which culminated in my heading up the DVD Production Department of a huge multinational music/entertainment conglomerate. My group was responsible for the programming and mastering of hundreds of discs, some of which sold hundreds of thousands of copies. When I first started in the position DVDs were such a brand-new technology that most people hadn’t even yet heard of them. Within a few years, though, DVDs exploded, and just as my disease was forcing me to to “retire”, Blu-ray discs had started to emerge as the next generation of consumer media. Now, over seven years later, streaming video (à la Netflix) is all the rage, a development I'd long anticipated but never got the chance to play a hand in.
The changing landscape of video production and consumer consumption has marched on without me, and the technological infrastructure to which I was a native and used daily to earn my keep has in short course become archaic. If I were to be suddenly cured and tried to reenter the workforce I’d be so far behind the curve that some snot nosed kid just out of college would put my once formidable technological knowledge to absolute shame. As far as my former industry is concerned, I might as well have spent the last seven years on a spaceship in suspended animation. Ground control to Major Marc…
The shock of my diagnosis created a seismic shift in my existence, and that shock reverberates still. You’d think that 11 years after my initial diagnosis, and over 15 years since my first symptoms started cropping up, I’d have somehow gotten used to the idea of my illness and its destructiveness, but no, several times a day I still find myself smacked in the head by the realities of my predicament. This perpetual state of shock has left parts of me petrified, in every sense of the word. Petrified as in scared silly, but also petrified as in unchanged despite the passage of time. I was officially diagnosed at age 39, and now, at 50 years old, parts of the inner me have been left untouched by the intervening years, stuck in a kind of stasis, in much the same state that they were when the disease first took hold. It’s kind of a diabolical case of arrested development; even as my body becomes ever more decrepit, parts of the me encased inside of it have been untouched by the passing years.
Almost all of my old hopes, dreams, and desires stand frozen, as if parts of my very soul have been put on ice (apologies to Eldridge Cleaver). Now, instead of propelling me forward in an effort to fulfill them, those old longings and expectations only serve to put an exclamation point on just how much the disease has cost me. The physical toll is obvious but the psychic not so much, camouflaged by copious amounts of effort spent trying to maintain a sense of stability and even contentment in the face of this brutal and ceaseless storm. Will I really never get to have my breath taken away by the artistic splendors of Florence, or purchase some ludicrously luxurious and fast automobile, or get stinking drunk on ouzo while carousing on an idyllic Greek island? While healthy, there was always the hope of erasing old disappointments with new successes, of paving over past mistakes with future achievements, but now those previous failings have been transformed from works in progress into set pieces, dioramas in the museum of my mind.
Yes, I dreamed big, and dreams die hard. In fact, I don’t think they ever die at all, but my old dreams now lie fixed behind a set of more humble but – barring any medical breakthroughs – much less achievable desires. To simply stroll through the springtime air, or to hug my wife with two strong arms, or to mindlessly jot down a note with my now-defunct right hand. In my long-ago life I amassed extensive collections of antique cameras and vintage wristwatches, both of which I took much delight in putting to good use. Now they sit gathering dust in boxes, physical remnants of a life suspended, the impulses that lead to my possessing them still existent but now also packed away by the distressing actualities of my stark new reality.
Much like those science-fiction spacemen, I awake to an environment that is resonant with echoes of my past. This new life is often incredibly difficult, to be sure, but the challenges it presents are also opportunities. Though some old friends and acquaintances have drifted away, new ones, fellow travelers on these uncharted waters, have made the journey much less lonely. The loyalty of my wonderful wife alone is reason to have faith in humanity. By extracting me from the hue and cry of my old healthy existence, my disease has afforded me a sense of perspective that informs my day-to-day life, and, I hope, might even help some of my comrades both healthy and ill to better navigate their own winding roads.
I’ve learned to not sweat the small stuff, and that most of what I used to consider gut wrenching problems are in reality small stuff. As my disease continues its infernal progression, finding contentment in what I have rather than what I once wanted or have lost has become a mechanism of survival. As the Buddha discovered centuries ago, desire, or more accurately attachment to desire, is indeed the root of all suffering. Despite the undeniable hardships within which I find myself stuck, I laugh just about as often as I used to, the sheer absurdity of my situation fodder for more laughter than tears. My mom is dealing with her own sense of suspended animation, courtesy Parkinson’s disease, yet somehow our telephone conversations often find us convulsed in hilarity. We both have more than a touch of the rascal in us, and the juxtaposition of our old pre-suspension hijinks with our new more sedentary and sedate forced existences serve to highlight the farcical nature of our puny little lives. Taking oneself too seriously is perhaps the gravest mistake a person can make.
Don’t get me wrong, despite the lessons learned and perspective gained, there’s virtually nothing I wouldn’t do to regain my health. As my creeping paralysis continues its increasingly destructive march, my tolerance for risk in my search for answers has become almost boundless, but despite my precarious situation there is still satisfaction to be squeezed out of these undeniably frightful circumstances. The old me is indeed in suspended animation, hopefully one day to be roused once again, but there is still life to be lived in this strange new world in which I find myself. It’s certainly not a life I would’ve chosen, but like it or not, it has chosen me. Despairing over my losses is only natural, but giving in to that despair would hand victory to the cosmic pranksters that conspire to make me the butt of their joke. I still have a middle finger capable of being raised, and with that raised finger I’ll continue to poke those pernicious little fuckers right in their beady little eyes. The joke's on them, for although part of me has been put into suspended animation, I'm still full of piss and vinegar…
