The Seven Vices - Envy, by Giotto (1306, Fresco, 120 x 55 cm, Cappella degli Scrovegni (Arena Chapel), Padua, Italy) (Photo credit: Wikipedia)
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?
I agree from the bottom of my heart.ReplyDelete
As always you hit the nail on the head.
Thanks for your comment, but I'm sorry that you're in a position to agree. There are too damn many of us out there…Delete
I’m going to be a contrarian and say I wear the envy badge proudly lest I forget who I’d still like to be. As I have repeatedly told my therapist, “I can acknowledge that I have this disease. I don’t have to accept it.” As I have also said on my blog and elsewhere, “I can be grateful for the gifts this challenge has given me and still hate MS.” In any event, thanks once again for being a masterful voice for expressing and analyzing emotions we have all felt.ReplyDelete
I don't think you're being contrarian, as I'm pretty sure none of us ever fully "accept" the fact of our illness. And we wouldn't feel envy if all those healthy folks to remind us of who we still want to be. I know that almost daily I am visited by the shock of this bizarre reality. We are being chipped away by inches, a truth that needn't cripple us emotionally, but also one that, I think, defies full acceptance.Delete
ay, there's the rub....ReplyDelete
Where, where? I happen to like rubs…Delete
I really like the way you writie, man! I wish my MS would inspire likewise.ReplyDelete
If you were a buddhist, I'd say you're not too far from awakwening.
Thanks Robert, that's quite a compliment. Though I'm not a Buddhist, I have studied Buddhist thought, and try to live the mindful life.Delete
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Beautifully and wisely put. I always find myself in the same position: raging against the pain and paralysis, and then realizing that I am missing the good in my life because I am wallowing. Thanks for a good reminder.ReplyDelete
Thanks for the comment, and you're welcome. There are times when raging is actually therapeutic, but only in limited doses. Wallowing in any emotion obscures our ability to live fully in the moment, as it's best to keep in mind that triumph and disaster are both impostors.Delete
I need this emblazoned on my forehead: "There is still life to be lived, even if it’s not a life you could have ever envisioned."ReplyDelete
I get on a good roll, stretching daily and riding my trike, then BAM! out of nowhere, I overdo it. ("I swear I did this same thing yesterday with NO PROBLEM!") and I have to start all over, resting, regaining energy, slowly working my way back up to what I was able to do previously. And then the cycle repeats. I feel like the White Queen - running, running, running to stay in the same place. Only, running? Yea, can't do that.
Gee, I think you'd need an awfully big forehead to have all of that emblazoned on it. You might wind up looking like Tweety bird with a billboard on his head.Delete
It's very easy to overdo it when we are feeling good, but what the heck, might as well strike while the iron is hot. Depends on how important the circumstances surrounding our modest version of living to access. Sometimes paying the price for days afterwards can be justified, but we are forced to choose our spots carefully…
Dear Marc and all others who have been chosen by MS,ReplyDelete
Your words are a cry of lamentation......they reverberated in my
very bones as I remembered the confusion, fear and awful sense of loss
that George suffered as his life fell away from him. Those who observe, no matter how
sympathetic, are none-the-less unable to grasp the immensity of losing one's physical and
sometimes mental abilities.
You are justified in being green with envy..and we who love you and those of ours who suffer,
are just as envious as well as blue with sadness. The remaining joys are truly hard won.
Thank you, Hilda, for your empathy and understanding, even as you attempt to cope with the loss of George. For you in your sorrows there are, too, remaining joys that can be won. Even in the gloomy depths of despair rays of light can penetrate the darkness. We can turn away from or towards the light, and I hope when the time is right you will experience brighter days.Delete
YES, and THANK YOU, from one of those people you might be tempted to ram in the shins . . .ReplyDelete
For various personal reasons, I do read and and am influenced by your blog. Though I move
slowly, I can still move and for that I am very grateful. Thanks for sharing your talents and
telling your story, painful though it is.
See, that's why I must restrain myself from the ramming. You never know which shins are truly deserving…Delete
Must be something in the air....the green cloud of envy...Funny that you should write about it at the same time I have been feeling it! I seem to be having a hard time lately finding those stray sunbeams amongst the many dark clouds that surround me. I am either jealous of others abilities or berating myself for not using all of mine when I had them. If only I knew is right!
As someone who was raised to believe that your worth was measured by how hard/much work you could do, now that I cannot do much work, my already low self esteem is in the toilet. I am trying to become a better, more understanding, compassionate person in hopes that I will then be able to like myself since I can no longer be deemed worthy by my physical abilities. Kindness to self is something I really need to work on....if I could just get out from under these clouds!!!
Thanks for your words which speak to me and sometimes as if from me.
One of the biggest challenges of dealing with this illness is the redefinition of self that it forces upon us. The fact is, though, that you are probably working harder now than you ever have in your life, just trying to maintain a less than stellar status quo.Delete
Practicing kindness to self is a very difficult thing to do, much harder than practicing kindness to others. We are always taught not to be selfish, or at least not to be obvious about it, and our current situation sometimes forces the focus inward. Of course, self kindness and selfishness aren't one and the same, but to some degree we've been conditioned to not see the difference. Seems like it's much easier to punish ourselves than give ourselves a break. It takes conscious effort, directed thought and an awareness of all of the crap bouncing around inside our skulls…
All of us, MS'd or not, fully experience, from time to time, the ravages of those emotions that escaped Pandora's box. I am trying to deal with the disease by focusing on what I can do, or could do as opposed to what I no longer can. If you can go to bed at night knowing that you have tried your best to utilize what God-given abilities you have left, then you are a survivor rather than a victim. Spending too much time agonizing over what you can't do compared to others is self-destructive - even though we all do it from time to time. In a sense, it's what the evil in the disease wants you to do - rip your own heart out while it works on your mobility. At the end of the day, we all get older and die at our individual pace. Knowing that you made the best out of the cards you've been dealt is a sensation that squashes envy like a bug. And that very act in itself should be treated by all of us a truly rewarding.
And, by the way, I am very envious. I wish I could write like you and had the courage to cruise around New York City in a scooter.
Not sure that cruising around New York City in a scooter/wheelchair takes as much courage as you think, often times it seems more an exercise in frustration than courage. Too many slow walking oblivious people, too many texters, too many potholes…Delete
Focusing on what we can still do rather than on what we've lost is key, and playing the hand you're dealt to the best of your ability is all that anyone can ask. As any poker player knows, sometimes a crap hand, played right, can win a large pot…
Marc, my envy is for all people who can eat and enjoy food and drink without pain. You wouldn't know I had MS if you saw me and might envy my ability to walk. But I would give up my walking to be able to have my mouth back -- able to eat, talk, kiss, without pain or fear of pain.ReplyDelete
Jennifer, your point is well taken. Some of the most debilitating handicaps of those we can't see. Pain is indeed invisible. I'm sorry to hear of your situation, and hoping you can find some relief.Delete
Marc,have you heard of Dr. David Wheldon and how he saved his wife from a rapidly progressing case of MS?ReplyDelete
He found a drug treatment developed by Dr. Charles Stratton at Vanderbilt University medical center and treated her with a combination of common antibiotics. She is now back to her life as an artist and has recovered almost all her function.
Here is his web site:
I know both David and Sarah his wife. They both post on:
You might also want to read Rica's story on the site. Look for her in Patient Stories.
Please take a look at this info--it saved my life too!
Hi Raven, I've been aware of the combination antibiotic regimen since the early days of my diagnosis, and in fact tried it about seven years ago. Unfortunately, it didn't do anything for me. I'm sure there is a subset of people with MS for whom the antibiotic treatment works. Perhaps they don't have MS and have been misdiagnosed, or there is a flavor of MS caused by chlamydia pneumonia or some other biological infectious agent. Unfortunately, MS is definitely not a "one-size-fits-all" disease…Delete
Glad to hear that the antibiotics were of such benefit to you!
Seize the day....ReplyDelete
When health and youth and energy are in abundance, there is no urgency to it.
If I were dying of thirst, I would look askance at the water I've wasted this past week: sprinklers, baths, laundry, houseplants. Abundance vs deprivation.
If you could be sponsored back to health (send $1 a day to Africa) it would be done in a heartbeat.
Yes, as has been said many times, we don't know what we had till it's gone. And youth is definitely wasted on the young. Let's see, can I come up with any more clichés? Sometimes clichés can contradict each other. Which is true, absence makes the heart grow fonder or out of sight out of mind?Delete
I don't mean to make light of your comment, sometimes my mind has a mind of its own. The thing about MS is that it leaves us so much time to look back on our old healthy lives, and really zero in on those missed opportunities or bad choices. Looking back can have value, as it can instruct us on how to live our lives moving forward. But we can't go back and undo our old missteps, though the desire is a universal experience.
Thanks for the kind thought about sponsoring my health. Unfortunately, even if you made the attempt, the pharmaceutical companies would probably figure out a way to suck up all the money…
I first came across your blog while researching Tecfidera and PML. As a former oncology/research nurse, I found your comments balanced, insightful and realistic. I decided it would be worthwhile to read more of your blogs. Your musings on envy are thought provoking. Although I don't share your level of disability, I have had to give up a job I loved, and I envy people who can work. Interestingly, I have 2 friends who envy me because I don't work. In the end, we have to cope with where we are at each day, and today, I have been enriched by your words. Thank you. Write on!
Unfortunately, I find it is all to easy being green. I feel infuriated when I hear people complaining about "problems," that I would give my left nut to have - "It's so hard to get to the gym," "Ugh, I have to go to work today." and when people tell me how tired they are. It is hard not to explain to them that they have no idea what "tired," is. Or, "I'm so sore from playing tennis (soccer, biking, skiing, running, etc.)." I'm sore from taking a shower. I guess I should be happy that I still CAN take a shower. Thanks for saying what has to be said.ReplyDelete
Your thoughts are so well written that I find myself envious that I can't do this as well as you. Once again it just strikes the chord(s) perfectly.ReplyDelete
Thank you for writing your blog.
ps. started Tecfidera last week. So far I've only turned red head to toe once!
All I can say is...holy shit! Truly amazing! Makes my ramblings seem like wasted time and space, but then again, maybe if I can make even one person laugh or smile, then it does have value. You are an amazing writer. Thank you for sharing!ReplyDelete
I, too, struggle with the "green monster." I've decided that Facebook is not my friend when it comes to trying to rein in envy. Folks posting photos of their adventures, and their able bodied enjoyment of life, all the while complaining about an inconvenience, or perhaps posting a photo of a bruised toe, or sprained ankle, or lamenting that they've had a cold for an entire week and can't take it anymore...really sends me over the edge. So I try to limit my trips to "Facebook World." I do find that even on my worst days, if I can find a way to be kind to someone, in whatever form that may take, I am encouraged and my spirit lifts. Thanks for the article. I'm always awed by your ability to "call a spade, a spade"...and I appreciate it.ReplyDelete
This is really amazing. I am so impressed with the way you write. And thankful too, because you let us in on how you feel and think. I don`t have MS, I am one of those you would probable envy. I will be reading more. Thank you!!ReplyDelete
I have read a lot of your posts since my wife's diagnosis, and this to me is the best one. It may be cliched, but it is true that a diagnosis like this does make you take stock of your life. The topics you covered apply to us all.ReplyDelete
I have had feelings of not doing enough with my life since the diagnosis, and I have moved toward improving that lot. Your words struck me more than any thought I had. If nothing else, take satisfaction that your words will be copy and printed and used as the turning point to a better life for my family.
I think yopu statedd that this blog is therapeutic for you, but it is a gift to those with MS and their families. Thank you.