Back then I was quite the neurotic, my psychological quirks and bugaboos manifesting themselves in manners great and small. Even as a child I was a world-class hypochondriac, constantly checking the whites of my eyes for signs of jaundice, always hyper vigilant for any suspicious lumps or bruising, once even convincing myself that I’d contracted leprosy – this after reading about the disease in the novel Papillion – and driving my mom so bonkers with my self-diagnosis that she finally took me to the pediatrician, who laughed out loud when I dramatically announced my dire conclusion. By the time I reached my teenage years, I considered myself lucky to have survived imaginary bouts with leukemia, stomach cancer, and several brain tumors. “Mom”, the 9 or 10-year-old me would plaintively wail on a regular basis, “I think I have a brain tumor!” After a while, her reply became well worn, but still comforting. “First you need a brain…” Yes, Mom was (and is) quite the cutup, and I was, of course, quite the delightful child.
Hypochondria was but one facet of the flea circus that bounced around inside my brain. I was riddled with all kinds of anxieties, ranging from the sublime to the ridiculous. Well into adulthood, the very thought of eating a big plate of pasta in a public place was enough to bring on a full-blown anxiety attack. Why? Damned if I know. Doesn’t everybody harbor a deep-seated fear of linguine in the dark recesses of their soul?
When I became sick for real and my disease started progressing, though, most of my neuroses abruptly faded and went “poof”. Suddenly I had something all too material to occupy my overactive synapses, and the starkly intractable nature of my illness served as a lens to focus my scattered eccentricities. Much of my previously misplaced psychic energies went towards diving headlong into learning as much as I could about the disease, and the rest were put in their place by my newfound sense of perspective, a toughened philosophy provided by the very tangible prospect of ever creeping paralysis, which cast a telling light on the relative insignificance of most of my old concerns, real or imagined.
Lately, though, I’ve started to recognize in myself a new set of psychological complexes, much quieter than my old kinks, but also much more insidious, a certain kind of crazy borne by the pressures of living a life filled with the stress of ever advancing physical ruin. Patients with relapsing remitting disease are undoubtedly faced with their own form of psychological perdition, never knowing when the disease might strike and what damage will be left behind when it does, a perpetual uncertainty that must engender its own particular form of dread. Those like myself, dealing with slow but never ceasing progressive disability, forced to watch the malady creep inch by inch, limb by limb, ability by ability, insatiable in its ugly war of attrition, must steel themselves against the psychic cost of watching oneself slowly disappear.
Given the undeniably awful realities of the situation, it’s a testament to the human spirit that we all aren’t stark raving lunatics, howling at the moon and cursing at ghosts. But just as the disease itself takes a physical toll, I suppose there must inevitably be an emotional price to be paid as well. Yes, I’m more psychologically stable now than I was before being stricken, definitely not prone to the fits of anxiety and freeform angst of old. Instead, of late I recognize in myself a sort of shrinking back from the world, a reticence to integrate with the land of “them”, the healthy and their buzzing realm of perpetual effortless motion, the narrative of their lives blessedly unbroken by the cutting blow of disease.
Despite my undying affection for friends and family, I find myself more and more inclined to avoid contact, phone calls left unreturned and invitations clumsily declined. Surely, some of this can be chalked up to the physical realities of my condition; I’m quite often literally too sick and tired to mount much of an effort. But the roots of my self-imposed solitude go beyond the physical, for as much as I can and do still enjoy the company of others, their very being and the untruncated lives they live serve to shine a spotlight on just how much I’ve lost, on the ever mounting toll this greedy beast has exacted. Being out in the world, by myself or with companions, is a double-edged sword. There is joy and wonder in droves out there, for sure, pleasures I can still appreciate and share, but my increasingly limited physical ability to partake of many of those joys and wonders brings with it an ache that burrows deep. The breathtaking ease with which the healthy dance on the stage of the world tantalizes and taunts, their antics a potential source of delight but increasingly one fraught with heart rending distress as well.
I find myself, despite my best efforts and better judgment, increasingly getting lost in the past, wishing that I could turn back the clock several decades for a second shot at it all. Given the time and opportunity to pick apart my old life as one might dissect the intricacies of a piece of enigmatic prose, the many mistakes made, the missed opportunities, the undeniable missteps of my long gone existence stand out in stark relief. Might a different choice here or there have put me on a path that would not have led to my being afflicted with this goddamned scourge? Live in the moment, I tell myself, stay in the now, embrace with gratitude all the good you still have, but the siren song of days long gone, faded times once so pregnant with possibility, penetrates my defenses like a laser guided bomb.
I think this troubling state of mind is symptomatic of an as yet unnamed psychological condition, a correlate to Post Traumatic Stress Disorder, commonly referred to as PTSD, the debilitating mental disorder that afflicts many who have experienced intense periods of stress, such as warriors, first responders, or victims of violent crime. Those of us with chronic debilitating illness don’t get to the point of being "post-traumatic", since our trauma is incessant and ongoing. So I propose a new psychological classification, Never-Ending Traumatic Stress Disorder, or NTSD. There's no doubt that along with the body being caught in the vise of an unrelenting foe, the mind is trapped as well. How can there not be a psychological toll exacted after being subjected to physical insult after physical insult, indignity after indignity, the slowly maddening drip, drip, drip of accumulating disability? I’ve watched helplessly as the disease has hacked away at not only me but many of my MS friends as well, my heart breaking for their losses as well as my own. Suffice it to say, I am not amused.
But then again, at times I am amused. Though admitting it might be considered a heresy, there are aspects of this experience that have been profoundly positive. Is it a sacrilege to say that I love not working? My forced “retirement” has given me a freedom I haven’t tasted since early childhood, a total liberty to do what I want, when I want, and how I want, albeit within the confines of my increasingly limited physicality. It’s allowed me free reign to explore interests and predilections that had too often been sacrificed to the workaday world. My days can be filled with music and movies, writing and photography, daydreams and online investigations for as long as my body allows. I can sleep when I’m tired, eat when I’m hungry, and, through the magic of long term disability insurance, get paid for it all.
Is it too taboo for me to admit that driving my wheelchair through New York City is a total blast? Whizzing past pedestrians, scooting across wide boulevards and narrow streets, the chair has proven to be the best mode of urban transportation I’ve ever experienced. Truth be told, if miraculously cured tomorrow I’d be tempted to keep the damn thing, as it makes getting from point A to point B in this congested metropolis not only efficient but fun, and sometimes even an adventure. Just today, in order to get to a doctor’s appointment, I took the contraption out in the middle of a snowstorm, despite the concerns of loved ones and even the doctor’s staff, who called to warn me of the treacherous conditions. Yes, the 10 block journey was a little bit hairy, especially on my return trip, as the chair skidded and swerved through the slippery white stuff accumulating on the messy city streets, but it was as close as I’ve come in years to replicating that old feeling of driving sports cars that I so loved in days gone by. It was good to have that adrenaline pumping once again, reawakening senses that I was afraid had atrophied along with my wasted right arm.
Through the wonders of the Internet, on MS forums and this blog in particular, I’ve met some wonderful people, both online and in person. I’ve learned more about compassion and empathy, community and comradeship, and the power of kindness and understanding than I ever would have had I not been walloped by our shared enemy. In fact, given the hard-fought wisdom gained and the new perspective achieved, if a cure were to suddenly be forthcoming this experience, as harrowing as it has been, might just qualify as a net positive.
But let’s be real, though advances have been made, MS, particularly its progressive form, continues to have the medical wizards flummoxed, the cause of all forms of the disease still cloaked in mystery. There is reason for hope, as research is beginning to offer up tantalizing clues, and the promise of cutting-edge therapies such as stem cells hangs on the horizon. Folks with RRMS now have treatments that can dramatically improve their quality of life, and might, just might, slow down the progression of the disease. Still, despite whatever positives can be snatched from the muck of the disease, the psychological grind of days imbued with illness and all its trappings must inevitably exact a price. Perhaps by simply recognizing this certain kind of crazy, this Never-Ending Stress Disorder, one can take the first steps in learning to, if not vanquish it, then at least keep it from getting the upper hand.
He says, while howling at the moon and cursing at ghosts…
