Just laughin' and gay like a clown
I seem to be what I'm not, you see
I'm wearing my heart like a crown
– “The Great Pretender”, the Platters, 1955
It’s strange when a phrase or quote that you’ve long known takes on new meaning due to changed circumstances. Such is the case for me with the lyrics of “The Great Pretender”, a song made famous by the doo-wop/R&B group The Platters in 1955. The tune has long been a part of the playlist in my brain. As the song goes, “yes, I’m the great pretender…”, only now I’m pretending in ways most likely never imagined by the lyricist.
A few weeks ago I had a late lunch with a fellow MSer in a famous restaurant nestled on the outskirts of Central Park called Tavern on the Green. We ate underneath an umbrella in the outdoor patio portion of the newly refurbished eatery, an idyllic spot on a glorious spring afternoon. My friend has a sharp wit and is wickedly entertaining, and she and I whiled away several hours lost in conversation and good food. Our chat ranged far and wide, but, as might be expected from two people dealing with multiple sclerosis, the topic of our shared foe came up at regular intervals, not in any maudlin way but more as the subject of information exchange and the occasional sarcastic verbal jab.
While we ate, me in my wheelchair and my friend with her cane resting beside her, the rest of the world buzzed around us, for the most part as oblivious to us as we were to it. Insulated in our own little bubble, we conjured an atmosphere of normalcy despite our abnormal physical situations, just a couple of gimps jabbering away, all the fleet footed and nimble fingered be damned. After lingering for quite a while, we finally finished our meal, paid the tab, and wheeled (me) and limped (her) our way out of the establishment, where we’d pleasantly spent a very rich few hours.
Just a moment or two after exiting the restaurant, though, my friend suddenly burst into tears.
“What’s wrong?” I asked, naturally alarmed.
“Look!” she sobbed, pointing at the broad inner roadway that circles the circumference of the park, which had become a blur of joggers and bicyclists. “I can’t do that anymore, and I want to.”
Our bubble had been burst and harsh reality rushed in to fill the vacuum. Crap. I felt a black hole tearing at the center of my soul. I reached my one good but weakened hand out to hold hers and hesitantly stammered, “I know… I know." Hackneyed platitudes dressed up as words of wisdom just weren’t going to cut it. This great pretender could do nothing more than share the hurt.
Though I like to think that I have successfully mastered the mantle of noble warrior, steadfastly staring into the eyes of the beast that is my creeping paralysis without any cloak of self-delusion, the plain truth is that in the years since my diagnosis I’ve become well practiced at the art of illusion, wielding psychic shields to protect myself from the sharper and sharper barbs of my increasingly dire situation. I guess this is only natural, a survival mechanism hardwired into our brains to help us cope with even the most dreadful of circumstances. Denial may be one word for it, but I think it’s more a subconscious reshaping of reality than a refusal to see things as they are, a sculpting of perception to create a much-needed psychological zone of comfort and safety. Of course, reality is always in the eye of the beholder, cross your peepers hard enough and even the most cockeyed of situations can appear straight as a desert highway.
Safe in the cocoon of my apartment, my increasingly dysfunctional existence has indeed become “normal”, the countless allowances made to the ravages of the disease rendered commonplace over time. Living with progressive MS is an exercise in constant adaptation; with incremental losses come a never-ending series of incremental workarounds. The disease has slowly left me with a right side that is completely on the fritz and a left that is continually weakening, transforming once mundane tasks into exercises in ingenuity and tenacity.
Sheltered within the cozy confines of my sanctuary here on the 18th floor of my high-rise building, all of the crazy workarounds and elaborate but clumsily choreographed routines that get me through the day seem almost ordinary. Within these walls my rather bizarre life has become the norm, allowing me the luxury of just being me, warts and all, negating any need for pretending. Sure, there are times throughout even days spent entirely alone at home when I’m hit with “holy shit, I’m a cripple” moments, instants awash in incredulity, but by and large, left to my own devices, I can relax and be myself in the self-contained topsy-turvy MS riddled world of home.
The Great Pretender springs into action once I venture out into the world, where reminders of my mangled reality are everywhere. It starts the moment I leave my apartment. Waiting for the elevator, I sit in my chair hoping beyond hope that when the doors open the car will be empty, saving me the spectacle of watching my fellow building dwellers scramble out of the way of my mechanical monster, my oh too cheerful apologies mixing with their forced graciousness in a perfect illustration of the human capacity for polite bullshit. Once out of the elevator I watch my instantly effervescent doorman rush to open the building’s doors wide for me.
“How are you today Mr. Stecker?” he asks just a little too enthusiastically.
“Better than those goddamned Mets,” I respond, and then we both force a laugh (for those blessedly unacquainted with The Mets, they are New York’s notoriously pathetic baseball team). In truth I appreciate these attempts at perfunctory pleasantries, while at the same time resenting the fact that I require added attention. And then it’s out into the bustling metropolis, where The Great Pretender kicks into high gear.
I love the city, I love being out in the city, but Gotham’s very nearness and dearness to my heart exposes that fragile little organ to the slings and arrows of my outrageous misfortune. All around me there are people doing wondrous things, walking and jogging and climbing stairs, driving and texting and holding hands, all with effortless grace and dexterity. They’ve no idea how lucky they are, just as I didn’t when I was so incredibly fortunate to be one of them.
Ass firmly planted in chair, I take on various roles as I roll through the town: observer, photographer, crazy Wheelchair Kamikaze, speeding through the streets so as not to let envy catch up and turn me green as a Martian. Shields up I deflect whirlwinds of emotion, psychological tornadoes shunted aside by the storm shelter of the Great Pretender. I honestly enjoy careening around the sidewalks of New York, though as my “good” arm and hand continue to weaken even that pleasure is becoming blunted. Still, there’s plenty to occupy the mind while at the controls – don’t hit that pothole, sure hope that pigeon is quick to the wing, watch out for the precocious scooter kid!
Once I arrive at my destination, other concerns take hold as there’s less to distract me from the facts of my broken down state. If I’m out for a jaunt by myself, say to the park or to the river, I mindfully try to soak up the scene and not let my sense of otherness overwhelm and ruin the moment, not always easy but doable while alone and left to my own devices. Things change in the company of healthy friends or family, when I somehow feel responsible for keeping them at ease with the situation, almost automatically conjuring a sense of nonchalant joviality that belies the gravity of my predicament. The Great Pretender wears thin armor and a welcoming smile.
What a great attitude, others sometimes marvel, even as I sit secretly coveting not only their hale bodies but also the problems that occupy their hearts and minds. Is that a horrible admission, that I’m jealous of the very same issues that often had me tied up in knots back in my healthy days? Problems that could be solved either through action, a change of mindset, or simply the passage of time? This implacable illness has no such solutions, thus far defying every effort to even just slow it down. Barring some incredible medical breakthrough, these are wounds that time won’t heal but in fact will only make worse, a truth I hardly want to admit to myself much less discuss with anyone else, other than the closest of the close.
As my disease progresses, maintaining psychic equilibrium in social settings requires more and more conscious effort. It’s hard to get lost in dinner conversation when your increasingly gimpy hand has trouble manipulating a fork. Such social outings are double-edged swords; they offer much-needed distraction and social interaction while at the same time putting a focus on just how much I’ve lost to this slowly exploding atomic bomb. My efforts at illusion aim not only to comfort others but myself as well. The approximation of “situation normal” that The Great Pretender endeavors to maintain is a way of breathing life into the me that used to be, the embers of which I’m afraid are slowly being doused. It’s good therapy to get lost in the occasional game of make-believe, but gosh it can be exhausting when the illusion is so easily shattered, when all that used to be taken for granted sits balanced on a razor’s edge, when looking down reveals an emaciated right hand curled into a claw. A physical and psychological juggling act of increasing complexity, socializing with friends has its rewards but also it's price. I usually find myself totally spent after such activities, needing days to recharge.
When I’m out with fellow MSers, it’s a somewhat different story. Regardless of the stage of their disease we share a common burden, and that sharing helps to lessen the load. Members of an exclusive club that none of us wanted to join, we speak a language that outsiders would at times be hard-pressed to understand. Even out and about in the great big land of the healthy a couple of gimps can carve out a world within a world. It can be exhilarating to talk about the ugliness of MS with someone else who just gets it, no explanations necessary. Speaking of things that to others might seem unspeakable can be a tremendous relief, a chance to purge and breathe deep. This sense of sharing creates its own temporary normalcy, and yet, as was the case with my friend as we left Tavern on the Green, the outside world has a way of shattering even collective illusions.
In a sense we are all The Great Pretender, revealing different sides of ourselves to different people, wearing different faces in different situations. In part, we choose our friends and lovers based not only on who they are but on the person they allow us to be. Chronic progressive illness digs deep, throwing a mass of new variables into the equation, increasing exponentially the complexity of the elaborate social dances in which we all engage. As the disease takes hold fundamental changes take place, not only physical but mental, changes visible and invisible that can be so traumatic that they shake our foundational notions of self. Protectively and instinctively I insulate body and mind, creating pockets in which my new decidedly not normal becomes normal, but the world outside still beckons, the company of others still calls. Though beyond the comfort zone lays the potential for peril, I venture forth with a spirit – at once both real and contrived – intended to bolster myself as much if not more than others.
And so yes, I’m The Great Pretender…
words fail me. this, for me, is your most moving and powerful post yet. tho the degree of our disabilities are different, the same beast looms over our shoulder, and i admire your ability to express these emotions without sounding whiney. i yearn for the kinds of personal connections you are able to maintain, and your strength in escaping the isolation that could so easily swallow you up, as it does me. if there has been one gift from MS, it is the understanding that everyone, to one degree or another, is a great pretender. thank you, as always, for sharing yourself with me.ReplyDelete
To be sure, at times isolation threatens to swallow me, also. I recognize, though, that in part this is my own doing. The effort it takes to socialize, or rather the anticipation of that effort, is often enough for me to shy away from the outside world. It's so much easier to just stay within the bubble, and I'm afraid that I've been guilty of ignoring friends and family simply because of the rigors associated with actually doing something social. In reality, most often the rewards far outweigh whatever physical price I pay, but worries about the physical logistics and psychological effort simple socializing commands make such socializing far from simple. Still, although there may be short-term comfort in solitude, as social animals we do need the company of others. Sometimes you've just got to push the limits…Delete
Oh, and BTW, believe me, I have my whiny moments…
thank you for sharing the face of MS for others to get a glimpse of what we experience and feel. Although anyone not in one of these bodies will never fully understand the complexities you describe, your words allow a sampling of what might be if their roles were reversed. Thank you for this difficult but exquisite look from your vantage.ReplyDelete
Laura, thanks for your kind words. Thanks also for the work you do on behalf of the MS community. This was a difficult post to write, after starting it I was confronted with a serious case of writer's block, which I suppose was an avoidance mechanism taking into "protect" me from facing a very serious subject. It's gratifying for me to know that the effort has been of at least some help to others, as putting words to painful notions was quite cathartic on my end.Delete
Would be nice if I had more pleasant subject matter to tackle, like maybe the rigors of trying to dine in every five-star restaurant in Paris over the course of a week. One can always dream…
or it would at least be nice to know we might sit in a cafe in Paris, writing our blogs about all that has come our way. Wherever you are writing from, and no matter how difficult it might be, continue to tackle these tough introspective looks. As a side note , just yesterday, a dear woman with PPMS asked 'do you read Kamikazee?' - This is the third time someone has asked me that question in a similar manner and you should know you have become so well known you can be called by one name (at least in the MS community), just like Cher or Bono or Adele. Continue to lead on, but also keep dreaming.Delete
Good thing I didn't name the blog Wheelchair Jackass…Delete
Profound and deeply moving, Marc. Like the song, sad and beautiful. Like life, unfathomable.ReplyDelete
Hilda, your short comment speaks volumes. Brevity is not one of my strong suits, thus my deep aversion to twitter. Thanks so much for your comment, and you know there is lots of love flowing back your way…Delete
Oh wow, on so many levels, I am dazzled. Yup, yup and yup on the camaraderie, the extra attention from others and the sudden whacks to the conscious. I'm completely aware that the first and most important person I'm pretending to is myself. But just for the day. And then for the next. And then for.....ReplyDelete
And finally, I should mention that the very first 45 I ever bought was the Platters "Pretender." I can still see it spinning on it's yellow plastic converter disk that allowed it to work on a narrow spindle player. I think I paid 89 cents -- a lot of money for a kid in 1956.
Daphne, thanks, but I'm sorry that you could relate on so many levels. I suppose there is strength in numbers, or is it misery loves company? Seems there is a cliché for every occasion…Delete
I do remember those little plastic converter discs, I bet most kids under the age of 25 would have no idea what one of those things is (dangling participle, I know, too lazy to fix). A Platters 45 is a great first record to have bought. I think the first record that I owned was a Beatles LP, but my mom had bought it. My first actual purchase was probably something much less impressive, like The Partridge Family… Yikes, did I just admit that in public?
You have a way with words. They come from the heart. I'd like to have lunch in Central Park with you!ReplyDelete
Thank you. Me right good.Delete
Sorry for the flippant reply, I just couldn't resist. As for lunch in Central Park, one never knows, does one?
Thank you for sharing these thoughts! After returning from a long trip to visit family on the west coast I was so relieved to get back to my "comfort, Karen accessible zone". Never do I feel so disabled as when I travel and need help at every turn. Also playing the pretender for family is always a strain, sitting watching the action instead of taking part and trying to pretend that it's all fine. Of course everyone is kind and concerned with my happiness but what I really want and what I know I can't have is to just be NORMAL! At home my friend and I are both in scooters, she from stroke and me from MS, and we call ourselves the "Scooter B$tches". This is our small way of coping and making ourselves laugh while we turn a negative into a sort of cool positive. But this is our bubble at home and among our friends, the outside world makes it all much tougher. Thank you again for expressing my thoughts so eloquently!ReplyDelete
Karen, I know exactly what you mean about the stress of traveling. Being out and about among healthy strangers allows me to affect the attitude of the observer, almost like looking at animals in a zoo. Amongst friends and loved ones, one is forced to interact, and the reality of being disabled gets magnified. The fact that everyone is kind and concerned with my happiness only puts an exclamation point on the fact of my unhappy situation. If only we could wish ourselves back to normal, but if wishes were horses then the Queen would be King, or something like that…Delete
Glad that you and your friend have formed her own little scooter gang. Maybe you should wear leather gang jackets, and have your scooters modified to sound like Harley-Davidson's…
So we find our cocoons, in which we spin a new existence which, once displayed, can dazzle with beauty, if only others could see. But, perhaps we all live in the land of the blind, hidden from each other's beauty. Perhaps, we hide it from ourselves.ReplyDelete
Yeah, it sucks big time that I can't jog down the street or dance till the wee hours. It's painful to see complete families living out the normal generational cycles. It would suck even more, though, to not allow myself to acknowledge those losses. Because, then, I would be denying my very existence.
So, your honesty, Marc, is an antidote to the despair which can come from having to be relentlessly positive and to never admit this illness sucks. Because the pain of loss will still be there, waiting to be unleashed, like with your friend, at unexpected moments.
The thing is, I never met braver people than I have met in the MS community. Faced with extinction, they somehow manage to affirm life. When someone who can't walk a mile still manages to crawl an inch in his imagination, that is powerful. There is nothing more intrepid than a spirit which continues to venture forth, despite repeated assaults.
Thank you, Marc, for venturing forth and gracing us with your beauty.
So well put, Judy. Indeed, I'm constantly blown away by the bravery I see displayed by other MS patients. Faced with the unthinkable, they not only carry on, but also do so with grace and dignity. Yes, we all have our ugly moments, but the fortitude of the patients I know, if somehow gathered together, could move mountains. And yet, many of us cannot even move our limbs.Delete
Thanks so much for contributing to this blog.
Great writing ... Absolutely on point for those of us struggling with this horrific curse.ReplyDelete
I share a similar story as you, Marc... I am a Superintendent of Schools outside of Springfield, Illinois. Three years ago I was in my third mile of a run when my left foot dropped. Long story short, I went to local neurologist, Barnes-Jewish Hospital in St. Louis, Chicago Medical Center, and Mayo Clinic in Minnesota where Dr. Wienshanker diagnosed me with SOLITARY SCLEROSIS ... A small singular demyelination on my Cervicalmedulliary Junction (just like you) and although I could still walk OK at the time, he told me basically I was screwed. So, I went to Cleveland Clinic and they did all the various treatments that you have gone through as well (all the while getting much worse). Nothing has helped as I now limp slowly along with a cane and now use a scooter. In April, I became a patient at TISCH in NY after realizing they are the best in the nation for the potential in possibly helping us or at least treating us with compassion. I now see Dr. Williams and he has been fantastic to work with. Although we are all hoping for a miracle, at least if it doesn't come in my lifetime, I can tell my wife and 6 year old twins that Dad went everywhere possible to try to save himself from this terrible affliction.
Keep on writing these posts... There are people out there, like myself, who have been reading them for years privately but count on your great posts to know they are not alone fighting this battle.
David, your kind words are greatly appreciated. So sorry to hear that you too suffer from the enigmatic Solitary Sclerosis, a diagnosis that seems to me to be just a little too convenient, a file in which to put those of us who defy any other designation.Delete
If you've read this blog, you know that I also have made the rounds of many of the renowned MS centers, and I'm lucky enough to live only 10 blocks from Tisch. I know Dr. Williams well, and hold him in the absolute highest regard. He's not only a great doctor but a terrific human being. I really believe that if anybody's gonna get this thing figured out, it's the folks at the Center, and, as you said, if this thing takes me down at least I'll go down knowing that I exhausted every possibility. Let's not write ourselves off quite yet, though, even if the dark at the end of the tunnel is getting frighteningly close, there's always the chance we'll run off the rails… Keep up the good fight…
Thank you, thank you thank you. I had felt the exact same way as your friend on a warm Spring day this year. I also wanted to walk, to jog, to run and not freaking LIMP and barely keep standing with my stand up cane or walker. Mentioned this to a health care provider and the response back was "you make it worse" Excuse me???? By being totally freaking HUMAN with actual emotions I make it worse? Unreal. Honestly, this person was not a doctor, but neuros can be the WORST, as they so often totally lack all empathy, compassion and have little to no sensitivity, or even actual "people skills." No, I had not said my true feelings to a neurologist, as there really is no point. They do not "get it" and never will. Certainly they love the money made off of this and other, (in my case), untreatable diseases though, but they have no understanding of our real lives. Thanks for being REAL, even if like all of us, you are yet another great pretender. Who isn't? And yes, MS is difficult to live with and it IS exhausting to play the positive and upbeat game. I do it at work becasue I HAVE to focus on others. No WAY will I play that phony crap in my private life. Once again Marc, as usual, you have totally hit the nail on the head. Yep, right on point, as the lawyers say.ReplyDelete
It is remarkable how flat out stupid some of the best educated healthcare professionals can be, isn't it? Of course, there are also those who are incredibly compassionate, to the point where I sometimes feel sorry for them and the emotional toll their work must take on them. It does seem that an inordinate number of neurologists have terrible people skills, though I'm lucky enough to have a neuro who is aces in that department. I've had plenty of interaction with those on the "other side", though.Delete
Between certain medical professionals, the insurance industry, and others with whom we have to deal because of our disease, I sometimes can't believe how much hard work it is just being sick. Really makes the blood boil, and even though I know that you can catch more flies with honey than you can with vinegar, sometimes it feels awfully good to let that vinegar out…
Thanks for your comments, and for keeping it real… Wow, I hate that expression, and yet here I am perpetuating it. I blame it on my brain disease…
This was so painful to read. I live in NY right on the park and the luck of living in this great city can make the heartbreak of what almost was unbearable. I have all the trappings of a charmed life yet no one would change places with me.ReplyDelete
"The heartbreak of what almost was"… Yes, at times unbearable. As I've said in some previous posts, I often feel as if I'm trapped in an old Twilight Zone episode. All the trappings of a charmed life, but with one gigantic asterisk attached. Rod Serling could have had a field day…Delete
Thank you for diving into the emotional depths many of us tend to avoid. I was more of a wuss when I wrote: "Tripped over memories of walking well." I feared to say more. I'm glad you did.ReplyDelete
Carmen, thank you. It can be hard to plumb the emotional depths, but once I start digging it's sometimes hard to stop. Almost like that old cliché about looking at car crashes…Delete
Hope you don't mind if I sing your praises. Love your website, and your photos are absolutely superb. Thanks for leaving a comment…
Thanks again, Marc. I feel something torturing my soul and then suddenly you're in there, in my mind, sorting it out and writing it down so gracefully. It helps so much to feel less alone.ReplyDelete
Julie, I'm glad my words help at least a little bit with the tortured soul stuff. You are certainly not alone, though the nature of the beast can often leave us feeling like castaways on a despicable island. Just try not to start talking to volleyballs, like Tom Hanks did in that movie… Then again, maybe better to talk to volleyballs and to keep it locked inside…Delete
I would like to Include your entry in my periodic e-mail. I will of course give you the proper credit. Your entry was very pertinent to all of our personal trials. I absolutely loved it.
It's very gratifying to know that you like my post enough to want to share it. By all means, feel free to pass it along…Delete
Your writing was, as usual, amazing. But I didn't cry. Then I read all the responses (so far). And I couldn't not cry. So many of us. And we all know of what you write.ReplyDelete
I rarely pretend anymore. Yea, yea, I know I need to have a positive attitude and dwelling doesn't help. Yea, yea, I eat well and stopped smoking and do my stretches and try to do 10 min on the treadmill. I am home bound, mostly due to Ohio weather (it's either too cold and icy, or too hot...and during the two weeks of good weather, I got sick!)...but dammit, this sucks and I'm not gonna pretend it doesn't. So, with mostly dark humor (which seems to be acceptable to the muggles - anything other than dark humor and they get upset - I carry on. It's what we do.
Sue, the comments people leave never cease to astound me. So much collective insight, so much collective pain. Yes, it does absolutely suck to have this cursed disease. No two ways about it.Delete
I think dark humor is de rigueur, certainly a necessary coping mechanism. Whistling past the gallows, if you will…
Oooh... That was one of your Best!!!
Oh well, it sucks to be Us, but what you gonna do? "Be happy with what you have. Live for the moment. Keep on Pretending".
Is it possible to pretend to be pretending? Sometimes the line between pretend and reality can get blurred, but then suddenly something happens to make the reality of our situation, well, all too real. At that point it's time to reach for the marijuana, but only for medicinal reasons, of course… Thanks for the kind comments…Delete
That last paragraph is so powerful its universality. I know we probably pick our friends and lovers based on whom they allow us to be as much as who they are. Yet illness can change everything quickly or slowly. Our parts are forced to change and cut from some scenes entirely.ReplyDelete
Still, there are times when I dare to imagine illness dressed as death looking at us dancing and with a hint of a smile before saying, "Boy, stop your silly strut. That's not you. Take off that silly costume and be that which you are. Be more than the sum of the roles you play." It is but a flight of fancy. I know. Still, there are times I want to believe maybe this newly imagined life we live in our heads is better...somehow better or truer.
Well, since all reality is in our heads, who's to say that whatever you've conjured to help get you through the night isn't a better place? One thing the disease truly does do is strip away the bullshit. So much of what makes up every day "reality" is completely contrived, from the material things we value to the social system that catches us in its sticky embrace. Being sick forces us to break many of those bonds, and to realize just how hollow so many "full" lives actually are. Can't drive that fancy car, can't tie those fancy shoes, can't climb that social ladder, but I can see how ridiculous it is devoting one's life to such things. Too bad it took a chronic illness to fully rip the scales from my eyes…Delete
Wow. Spot on, Marc, and a seemingly fearless evisceration of deep, dark secrets. Brutal truths both unsettling and yet comforting in the empathy they evoke. I feel obliged to leave the apartment despite the warm fuzzies of my daytime hermitage.ReplyDelete
What good are deep dark secrets if they can't be eviscerated every now and then? It's gratifying to know that this post puts words to what so many feel, but it's also very saddening that so many can relate to such words. What a crummy disease.Delete
I empathize with your obligatory sojourns from your daytime refuge. As the disease chokes harder, though, the motivation to get a move on must be dredged from deeper depths.
Thanks so much for contributing to the blog…
",,, the heartbreak of what almost was. " Well that says it all in a mere sentence fragment. I can barely type this for the tears in my eyes. Thank you Marc for a beautiful, difficult post which spoke to so many feelings we all have and thanks to all the readers for their insightful comments. Your best post yet IMHO.ReplyDelete
Thank you so much for your extremely generous comments. I wholeheartedly agree with your assessment of "… the heartbreak of what almost was." Really sums up the whole fetid shebang in six short words. However good this post may be, the comments from those who have read it are what give it life. Much appreciation to you and all who took the time to share their thoughts…Delete
You eloquently and almost objectively manage to draw much of what I feel in the prison of my diseased body with your writing. I am often too emotional and involved. Thank you. What others take for granted is either a challenge or impossible for me and I find myself also envying their problems... while trying to be grateful for the faculties that I retain. I so appreciate your posts. They help me to know I am not alone although I usually feel that I am...Delete
Thanks for participating in this blog, Savannah. It's very easy to feel alone when dealing with this disease, even though you may be surrounded by a crowd of people. I guess those of us with the disease are all alone in this together, if that makes any sense. One mind hack I use when things start to get overwhelming is reminding myself how insignificant I am in the grand scheme of things. Yes, my disease is a horrific tragedy when viewed through my eyes, but in the eyes of the universe I (and we all) are but the tiniest specks of Stardust. 100 years from now we will all be distant memories, our triumphs and disasters but tiny footnotes if they are even remembered at all. And that's how it should be. We are all just players in a great big theater of the absurd, acting out our roles without having even read the script. Perhaps it's strange to find comfort in such thoughts, but it helps to keep it all in perspective…Delete
What a fantastic blog! So brave of you to share your inner thoughts and feelings which many of us share with you. You have put your visceral feelings out there for all to see and that takes intestinal fortitude. This blog , as others have mentioned, is so on point! Thank you for sharing this with us.ReplyDelete
"The art of living is more like wrestling than dancing."
Thank so much for sharing you innermost feelings with the world. It hits home on many levels. The intestinal fortitude you have to post such a personal accounting of your feelings is remarkable! As others have mentioned, it is so on point. Your insightful views and thoughts are appreciated and resonate with me as they do with most of the MS'ers in this world despite our battle to put up a strong front.
Sorry for repeated phrases and wording...brain fog!ReplyDelete
Thank you so much for your incredibly generous words. Just glad I can do my part to help others with this disease, even as I am helping myself.Delete
And, please, no apologies necessary for any stylistic lapses. Heaven knows I make enough of them to keep all of us covered… Thank goodness for the magic of "proofreading"… I usually wind up revising these essays even days (sometimes weeks) after I post them…