It's Not Easy Being Green

Envy. I’m not proud of it, but I confess that I find myself consumed with this ugly emotion with increasing frequency, in direct proportion with the progression of my disease and my increasing physical disabilities. Of the seven deadly sins, envy is certainly amongst the most distasteful, right up there with anger, greed, and pride, all such unpleasant and unlovable traits. Lust, gluttony, and sloth, on the other hand, while certainly not foundations upon which to build a thriving long-term existence, can be an awful lot of fun in the right doses. I’ve always felt that the occasional pinch of decadence was a requisite ingredient in the recipe for a life worth living.

But I digress, back to envy, that entirely negative and frustrating beast. As much as I try not to succumb, as much as I try to maintain the emotional control which is so essential to sustaining psychological equilibrium in the face of progressively debilitating disease, envy often finds the cracks in my defenses and breaches my emotional levees, and when it does the sentiment inundates my being with its toxic sway. As I roll through the teeming city streets or the more gentle confines of Central Park with my backside firmly planted in a wheelchair, passing tens and hundreds and thousands of the healthy masses, I find it at times impossible to not yield to waves of envy, covetous of the most humble abilities on full display and taken entirely for granted by those around me, mundane everyday actions that nevertheless taunt me like a poke in the eye – simple miracles like to two working legs and two working hands, fingers breathlessly nimble, and senses tingling and undulled, all utilized with nary a thought or conscious desire. You don’t know what you’ve got till it’s gone, they say, and, oh, the envy that can be risen by the sight of those whose terrific good fortune allows them to maintain their blissful ignorance.

At times it feels as if my illness is turning me into a breed apart, and despite my attempts at denial, I suppose such a transformation is inevitable. One of these things is not like the others, and that one is me. Yes, of course I’m still human, a sentient, feeling being, and this binds me to the whole of humanity, but in physical terms I am inexorably drifting further and further from the main. Some parts of the world are now quite literally shut off to me, a simple 6 inch high step as impassable a hurdle as the ramparts of a medieval castle. Food that cannot be easily consumed with one hand holding a fork or spoon needn’t be edible if placed in front of me unless I am free to go caveman and pick up that chicken breast or ribeye and tear away at it with my teeth, actions that are generally frowned upon in most fine dining establishments. Clothing with buttons, zippers, or even snaps are as useful to me as a Jell-O hat, and don’t even get me started on shoelaces.

But it’s generally not my frustrations with the obstacles of the physical world that engender aching pangs of envy. Rather, it’s observing the modest joys achieved without thought by the blessed masses that provoke a cascade of jealousy: the leisurely stroll or the hurried stride, the gesticulations that say what words cannot, the effortless grace of a lovers embrace. On these my gaze falls longingly, as remembrances of my own healthy long-ago life, so divorced from the one I lead now, claw their way out of the carefully constructed lockboxes in my mind to disrupt the ordered reality I try so hard to consciously maintain.

I envy the young for their vibrantly radiant energy; even sitting still they shimmer and glow. All that beaming vigor, if only I could siphon off just a drop from each I’d be dancing in no time. I envy the old – even those who move with obvious effort – for their decades lived without suffering a life altering physical catastrophe and for their active old age, a stage of life I will likely never know. I sit amazed – and, I must admit, in weaker moments aghast – at how many octogenarians are in far better shape than I. Let them all live long and prosper, the young and the old alike, but their very existence sometimes seems designed solely to mock my own. There are days when being out in the world can be invigorating, when I can lose myself in the kaleidoscopic swirl of humanity, if even just for a few moments. There are other times, though, that the very thought of leaving my sanctum is simply too much to bear, when solitude is the only companion I can stomach.

In those down times, though, I try to remind myself that even in my current debilitated state there are those worse off than I, some sharing the disease that afflicts me, who might look to me with envy. And there are others, perhaps those racked with terminal disease or ruinous injury, who could very well be covetous of the plight of the poor souls who envy me. The ladder of despair is long, and those clinging desperately to each rung can't help but occasionally glance upwards and stare jealously at those just above them.

I vacillate between trying my damnedest to suppress the urge to direct my wheelchair full bore into the shin bones of the able bodied and wanting to roll up and beseech them to fully embrace the power and majesty of their unsullied health. “Do you know how lucky you are?”, I want to shout at them, especially those who look sad or sullen. “Did you lose your job, some money on the stock market, a lover or spouse? Are you worried about the state of the world or suffering from some existential angst? How wonderful! Now you can take a night to feel the hurt, and then wake up tomorrow and use that fully functioning body and disease-free brain to start anew, to find a better job or make more money or discover some wonderful new person or decide to do something constructive to improve your lot in the world and maybe even help your fellow man! With your health intact you hold the power to reinvent yourself the moment you muster the will to do so. Never forget that you’re only as stuck or lonely or despondent as you want or allow yourself to be, the past is nothing more than a quickly fading photograph, and whatever emotional baggage you’re carrying around can be released as soon as you decide to stop letting it drag you down. The only reality is that which you create, and the future offers nothing but boundless opportunities as long as you allow yourself to be open to them! Choose happiness, since you’ll never get a refund on the days you spend miserable, and as long as you’re healthy the world and all of its glories are there for the taking!”

Yes, I’d sound like some gimpified late-night TV self-help shyster, but every word is true. I suppose that’s what I find so truly galling about seeing all of these magically healthy people; they bring into shattering focus the fact that I wasted so much damn time on what ultimately turned out to be trivialities when I was one of them. Here comes a cliché: if I only knew then what I know now, but how true, how goddamned true. If I could just go back for five minutes and give myself a good swift kick in the ass! I’d shout at the younger healthy me, “Stop stoking the embers of that broken heart, get off that couch, and call that sexy blonde who’s been flirting with you for the last year and a half! Don’t let fear dictate the day! Quit that soul sucking job you hate and put your talents to use chasing your dreams! Go learn how to scuba dive, or skydive, or do any of the million things you’ve always wanted to do but never got around to actually doing! Because time is finite, and there just may come a day in the future when you will no longer have the luxury of making such choices. Don’t want to scare the crap out of you, buddy, but let’s just say you’d better get cracking…”

As I write this, I realize that all of the above advice, all of my imaginary admonitions to the healthy and to the younger me, apply with a few modifications just as well to who I am now and my current circumstances. Yes, I have disease imposed restrictions, and they suck. But I still have the capacity to find joy, I can still pursue my pleasures – albeit from a more limited menu – and the world is still brimming with wonder. Though I am physically worse off than I was a year ago, I can still get out and about, can still take photographs, can still write essays that I hope resonate with folks in similar situations. It may take me longer to do these things, and I may be forced to curtail the scope of my activities, but I’d best do what I can do now for as long as I can do it because perhaps the only thing I know for sure is that progressive diseases progress, and I have a progressive disease. I suppose that makes my future more uncertain than most, but everybody is traveling down a path made up of nothing but blind curves.

I know my feelings of envy are shared by at least a few of my fellow MSers, as the topic has come up in quite a number of conversations I’ve had recently with some of my MS friends. As with all negative emotions, envy cannot be eradicated, for how can one in a wheelchair not be envious of those walking so effortlessly all around them? The key is to acknowledge the envy and then do your best to let it go, for its toxicity is only a fleeting poison unless you allow yourself to wallow and dwell, using envy’s sharp edge to administer distressing self-inflicted emotional wounds. The disease itself does enough damage all by itself, it certainly doesn’t need the help of negative emotions run amok.

So I guess I have some work to do. As I’ve noted before on these pages, one of the lessons imparted by MS is the value of kindness, and especially that of kindness to self. On days when the outside world seems too daunting a place to visit, it’s okay to relish the safety of your cocoon. But the outside world isn’t going anywhere, and those of us faced with the ravages of progressive debilitating illness know all too well how precious a commodity is time. Once each day is gone it’s not coming back, and despite the restrictions we face, the paralysis and pain and emotional distress, as long as nothing suddenly calamitous occurs only we can determine whether any particular day is good or bad, fruitful or wasted. There is still life to be lived, even if it’s not a life you could have ever envisioned. Fuck envy and fuck MS, each on their own is ugly, and the combination is wretched. Each new day belongs to nothing and no one but me, so who better to put into action the wisdom and perspective so harshly imparted by this dread disease?

This article was originally published on Marc’s website on 07/01/13 and is being featured on with his permission.

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