Reduced to its essence, the Gordian knot of emotions in which I find myself evermore entwined as my disease progresses can, I think, be summed up in those three short words. All of the anguish, fear, confusion, sadness, mourning, determination, courage, nerve, and the dozens of other emotions engendered by my brawl with chronically progressing disability, when condensed and whittled down to their core, can be expressed by these seven letters: I miss me.
Though the words may be simple, the sentiments they embody are anything but. They touch on matters physical, emotional, and spiritual, an explosive critical mass of feeling that has become a constant companion, one that can be quieted at times by distraction and determination, but is never entirely hushed. Though I strive to make the best of a bad situation, there can be no denying it. I miss me, in so many different ways, I miss me.
I miss my right arm and leg, which although still a part of my body have become maddeningly uncooperative, more a hindrance than help. My left side is weak and getting weaker, and a peek through the curtains at what this foretells of my future is almost too frightening to look at. Was it only a dream that I was once able to use these balky limbs as if they were on automatic, most operations being carried out by commands issued on a level somewhere below willful consciousness? Now it seems even the simplest task takes at least a modicum of planning and forethought, more complex operations requiring creativity and the pushing of physical limits, while many others have become simply impossible.
What wondrous things my four working limbs were once able to accomplish! Walking, running, climbing stairs, dancing, yes dancing! Writing, drawing, typing, gesticulating, hugging! And that was just the easy stuff. My mind can still conjure up ghosts of the exhilarating sensations of driving a convertible sports car way too fast, one foot pressing hard on the gas pedal, the other working the clutch, left hand on the steering wheel and right on the stick shift, all four limbs working in concert to meld me with the machine. I can almost make real once again the feel of the road and the vibrations of the engine coursing through my body as I downshift into a turn, the nimble automobile an extension of my senses, its throaty growl mixing with the warmth of the sun on my skin and the fingers of wind messing my hair to intoxicate the senses. No matter how hard I try, my current set of wheels cannot come close to what once was. My wheelchair just can’t cut it.
I miss the me who was free of illness, as flawed and discontented as that creature often was. If only I could trade my new troubles for those that used to keep me awake at night. I was really quite the neurotic, regularly going toe to toe with the demons of a multitude of anxieties, at times, methinks, seeking out reasons to be troubled. In retrospect, it just may be that I was more comfortable with feelings of distress than with those of joy. Boy, was I hard on myself.
Affairs of the heart were a special bugaboo, and one that I cultivated like an expert gardener, consistently hitching my wagon to “partners” who were like cyanide for the soul. I had the unfortunate talent of being able to latch onto the one woman in any crowded room who would cause me the greatest heartache. In matters of career, although I steadily climbed the so-called ladder of success, I often found myself working in settings that were absolutely suffocating. Although the work I did was creative (video production/editing), for long stretches I did it in very corporate environments, a square peg being shoved into a round hole. Some people thrive in the highly structured atmosphere of corporate America, finding security and challenge in the hierarchy and politics of the workplace, but for me the necktie I had to wear each day was a noose, the office walls a prison. Each day I’d act a role I just wasn’t born to play, until my sense of self became twisted and blurred.
So what was there to miss, you might ask? Now that my old healthy life is just about completely divorced from the one I currently lead, I can see just how pregnant with possibility those times truly were. It was all really just a matter of choice. It wasn’t preordained that I find myself in unhealthy romances, and it certainly was within my purview to pursue work in situations more to my liking. The opportunity to create my own joy was infinite; the only thing holding me back was me, and the emotional baggage to which I stubbornly chose to cling. I was only as stuck as I allowed myself to be. If only I could reach back through time and give myself a good talking to. A common lament to be sure, but one made all the more keen by the knowledge of just how finite that precious healthy time turned out to be.
And besides, even through the bad times I had my share of fun, as I was always a bit of a rascal and a habitual night crawler. God, how I miss getting good and drunk. These days, booze only makes my symptoms exponentially worse, an effect that lasts for days after my imbibing. Also, booze on top of all of the pharmaceuticals I take to control those symptoms might very well put me in a coma. Dastardly disease.
Thankfully, in the years immediately preceding my diagnosis, I finally did learn some of my lessons, and effectively changed my reality much for the better. I met and married a wonderful woman possessed of a truly good soul, and found work at the top of my profession, in an environment that, despite being world-class, was at times almost wanting for structure. Things were definitely looking up until that day almost 10 years ago when my right knee strangely buckled, and with it almost the entirety of my life over the next few years. Which brings me to the me I think I miss the most, the me that might have been.
Where would my path have a lead had I somehow dodged the cannonball of disease? I was diagnosed only one year after I was married, and although my wife has miraculously stuck with me, our life together is a far cry from that which we had once imagined. Eagerly dreamt of trips abroad have been replaced by an endless parade of visits to a procession of doctors as my condition steadily worsened and my diagnosis became less and less clear. Weekends spent strolling hand-in-hand through the city and Central Park proved to be all too few, in their stead now the occasional walk and roll down the street together, my one functional arm and hand operating the joystick of my wheelchair, not slung across the shoulders of my betrothed, holding her tight. We make the best of it, and still manage to have a good time, but our husband-wife relationship now must make room for a patient-caregiver dynamic as well, making all too true the vow “in sickness and in health”.
At the time my disease forced me into “retirement” over six years ago, I was heading up one of the premier DVD production facilities in the world, and had played a key role in making of some of the best-selling music related DVDs on the market, some selling hundreds of thousands of copies. In the time since, the technology has moved to Blu-ray discs and streaming video downloads, a path my career likely would’ve followed as well. Would I today be working on providing content in its many forms for the explosion of media outlets driven by the Internet and portable devices? Would I have had a hand in perfecting 3-D technologies, or perhaps vehicles for entertainment and information distribution that are only now on the drawing boards? Might my career have morphed into something completely unexpected, and perhaps more fulfilling? For even though I had made it to the big leagues of my chosen profession, I still felt that something was lacking, as my responsibilities had shifted from the creative to the administrative as I made my way up the totem pole. Would I have forged a chance to realize my creative ambitions? What new places might I have visited, what new people might've I met, what new experiences might have thrilled me? So much left unknown, and forever unknowable.
With all of that the disease has taken away, it has also bestowed some unexpected positives. Not working has afforded me the freedom and luxury of time, allowing me to pursue long neglected interests like photography and writing that had taken a backseat to my career and social life. The realities of creeping paralysis have provided insights and perspective into that which is truly important, and turned some philosophical abstractions into concrete strategies for coping and survival. I’ve learned the immeasurable value of kindness to others, and especially to myself, perhaps the hardest form of kindness to practice. Seizing the day, living in the moment, and mindfully occupying the now have all been transformed from platitudes into realities vital to maintaining serenity and sanity in the face of ever progressing disability.
Although it was already well-established, my sense of the absurd has germinated like a vine in a tropical rainforest, as the line between tragic and absurd is challenged daily by not only the disease but also all too frequently by the labyrinthine and often asinine medical establishment that exists ostensibly to treat it. Learning to accept help, and sometimes even ask for it, has strengthened my ties to humanity; truly no man can live as an island. Without doubt the most unexpected gift of all has been the response to this blog, which never ceases to shock and humble me. The idea that I might somehow be providing a form of comfort and assistance to my fellow travelers down this trail of blind curves has made what may very well have been unbearable bearable, and is something that I am thankful for every moment of every day.
But still, I miss me.
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