Brugge Reflections (Photo credit: Wikipedia)
The very personal world that we consider ourselves to be part of is entirely determined by self-definition. Many elements combine to make up our sense of self: past histories and experiences, the friends we choose to surround ourselves with, our mates, life partners and children, the jobs we do, the dwellings we occupy, the material objects we possess. These are just a few of the many components we use to construct our realities.
One of the key elements involved in our self defined realities is health, which can easily be taken for granted when things are going good. Once our physical well-being is delivered a serious blow, though, health suddenly leaps to the forefront, and if the diagnosis is serious enough, it can eclipse the total influence of all the other fundamentals combined. A chronic and debilitating illness can not only jump to the head of the line, but can bend, spindle, and mutilate many of the elements of a world that we had only recently felt so safely a part of.
At the moment of diagnosis, the newly ordained MS patient is blasted out of the reality they once knew and into a sort of parallel universe. None of the externals have yet likely changed much, but inside the patient a Big Bang has taken place, as former assumptions of self identity disintegrate, and new clusters of definition start forming through a haze of questions, shock, and confusion. Frustratingly, the outside world continues on as if nothing has happened, a perpetual motion machine that stops for the problems of no single person. As much as we may desire a timeout, just to catch our breath, none is granted. We must adjust to our new reality on the fly, which only adds to the sense of disorientation.
While we still exist in the world of the healthy, we are no longer truly a part of it, set adrift by the knowledge of a disease that lurks inside us, leaving us living in a world apart. Though a seismic shift has taken place, as long as the disease remains relatively mild the fissure is slight, the changes within at first recognizable only to the patient themselves. Our friends and family, when told of our predicament, offer heartfelt sympathy and measures of comfort, which of course are welcomed and much needed. What they can't offer, though, is a true understanding of the nature of the beast, as that damnable knowledge can only be fathomed by those who have been through the crucible of a body beset by disease .
Those of us unfortunate enough to quickly suffer the progressive disabilities for which MS has earned its cloak of dread soon see the chasm between our new reality and the one we used to occupy ever widen. While the members of the healthy population (sometimes called "Muggles" on some Internet MS sites) perform such amazing feats as effortlessly standing and walking, they cannot know the guttural anguish and inconceivable frustration involved in losing such abilities. Paralysis is one of the most feared conditions known to humanity. For good reason, most shy away from even the thought of it.
Those who love us, and in some cases take care of us, do their best to comprehend, and certainly suffer a brand of anguish and frustration all their own, but they are gratefully not of the world in which we now reside. Although they may empathize with us, only by living inside our skin could those who care ever truly know, and that is a fate I wouldn't wish on those I can't stand, never mind people I like and love.
Although we still occupy a place in their world, to the healthy our reality is an alien environment, beyond the grasp of those who are not residents. This can sometimes lead to seemingly callous remarks, or an apparent ham-fisted disregard to the sensitivities of the situation, but by and large I've found my dear Muggles do a remarkably good job of affectionately helping me navigate a world full of physical and emotional pitfalls that they themselves cannot see but with effort can get some sense of, like a blind person using a stick to navigate their way across Broadway. For this I consider myself lucky, as I know other patients have been left on their own by partners and loved ones who could not reconcile these new imperfect circumstances with their own versions of reality.
Strangers can be a different lot, as most are unfamiliar and uncomfortable with members of the world of the sick, who some may see as somehow diminished, and as reminders that their own complex reality is built on foundations of gossamer. Though most behave with a fair amount of grace, there are those who overcompensate to the alien in their midst, and say or do some incredibly stupid or insensitive things. I generally try to cut them some slack, as I when was in their shoes I was just as capable of committing similar stupidities.
Unlike the friend, lover, caregiver, or stranger who most likely has only ever lived in the land of the healthy, those of us with chronic illness have straddled two worlds. We the sick can remember a time when we were part of the healthy world, even if it now often seems like something of a place of wonder, and sometimes one of intense frustration. I can remember how wonderful it was to be free of disease, to be able to perform now impossible feats without even giving them so much as a fleeting thought. Although we may no longer be of that world, we still live in it, and within it we are constantly confronted with echoes of our own healthy past. I must admit to the occasional feeling of jealousy when watching a couple stroll hand-in-hand, or when my gaze sets upon somebody doing something as mundane as bending down to tie their shoe lace. How glorious to be unencumbered by a rebellious body, and what a rotten twist of fate to be saddled with disease. Still, though we might not be masters of our fate, we can and must be masters of our own reality.
Regardless of the world we live in, we owe it to ourselves to find contentment. Despite physical infirmity, our realities are still shaped by our thoughts, emotions, and perceptions, all of which can be harnessed, as they are a product of us, and not we of them. In each moment lies a kernel of good, and like a gold nugget it can sometimes be found resting right on the surface, but more often lies hidden under a pile of muck, requiring conscious effort be expended to discover it. By concentrating on what we have rather than what we've lost, on those who have shown us kindness rather than those who have been harsh, on this very moment rather than an irretrievable past or an unpredictable future, we can shape a reality that transcends the parallel universes of the healthy and the ill and find a place of self fulfilling satisfaction, where a diminished body needn't dictate a diminished existence.
Brilliant. Heartrending. Wise.ReplyDelete
WK..I love how eloquently you can put into perspective how we MSers feel and/or fit into this suddenly "alien" world. You have a wonderful gift, & it is great knowing that someone else can express all of our thoughts that we may be afraid to otherwise say. Thank you! KIMReplyDelete
Thank you so much. Personally, I think my greatest gift is the "Wally the Green Monster" Boston Red Sox mascot beanie baby that my wife got me a couple of years ago, but that's another story.Delete
It's very gratifying to know that my feelings are shared by so many. MS keeps throwing us curve balls, all we can do is hang in there and try to keep swinging (how cool was that, on baseball reference after mentioning Wally the Green Monster).
Greetings from Poland
You're very welcome. As much as I profess to hate modern technology, it is truly incredible that words I type in my bedroom here in New York are read all the way in Poland. Wow!Delete
Beautiful! Another outstanding piece of work, WK!ReplyDelete
Thanks so much. Your new blog is really coming along nicely, congrats on.Delete
Marc, your words are profound. You have captured the intensity of what we've all experienced with our initial MS diagnosis. You've once again reminded us of how important living mindfully...in the now...really is. I wonder if you'd allow me to print some of your pieces in WellnessMATTERS Magazine (making it's debut in the San Francisco Bay Area in July). You have so much to share with others - with and w/o MS. As Sr. Editor, I'd love to include some of your perspectives about life. Email me with your thoughts on this request. Of course, any piece that I use would direct readers to your blog address. Sending love and hugs and wishes for your wellness. Cassie (email@example.com).ReplyDelete
Thanks, I sent you an e-mail regarding the magazine. You most certainly can use my blog posts if you feel others would find them helpful. That's what it's all about…Delete
All of your words touch my soul, but these went straight to my core. You captured exactly how I felt at that moment and what I struggle to make sense of everyday. Thank you. Sending Prayers.ReplyDelete
I'm glad my words have touched you, but sorry that you are in a position that would make them meaningful to you. It is comforting to know that although each of our experiences are unique, we do share similar feelings.Delete
"No posts matching the query: antidepressant."ReplyDelete
Not quite sure what you're getting at. Does this post make you think I need to be on antidepressants? I already am, and have been for 27 years. Yikes!Delete
On the other hand, if you think I should write about antidepressants, that's probably a good idea, since depression is so common among people with MS. It's both a symptom of the disease and a reaction to it. Seems that everything about MS is complicated…
My daughter and I were just discussing many of the same things last night. I came to the same conclusion as you, though not as eloquently. I can choose how I will react to, and live with my ill health. I choose to be thankful for what I have, make the best of my situation, and find happiness and contentment within that.ReplyDelete
It's very important to realize that you do indeed have a choice. Pop culture would often have us believe that we are at the mercy of our emotions, when in reality they are a product of our minds, and if we allow ourselves the luxury, we can control our thought processes. Not that we should deny our feelings, but we can acknowledge them and then decide to let those that are negative go.Delete
It's important to not let yourself get down for being down. The sun isn't always going to shine, especially when dealing with a monster like MS, but we needn't drown in the floodwaters either.
Wow. Damn, my man, that's an incredible piece of writing, with incredible insight. You're not "killing me softly" (the MS is doing that) but you are definitely "Strumming my pain with (your) fingers / Singing my life with (your) words".ReplyDelete
Okay, are you quoting the Roberta Flack or the Lauren Hill version of the song? I guess since the lyrics are exactly the same, that's a stupid question.Delete
Anyway, thank you. I think at one time I knew who that song was about, but now that knowledge escapes me. Maybe time to hit Google…
Greetings from Canada.ReplyDelete
This is so touching... and so true! Thank you.
You are very welcome, Nina.Delete
A beautifully written, perceptive and insightful piece that accurately describes what most MSers feel and ends with a reminder of what many of us can forget. Thank you for the reminder - I needed it today.ReplyDelete
Believe me, most days I need to remind myself of that very same advice. Finding some measure of satisfaction amidst the ins and outs of dealing with disease is an ongoing practice, a journey without end.Delete
You actually know patients that have been left to fend for themselves? Patients with kids and long term marriages? Wow. Thats got to be horrible? Especially those that can barely get on a toilet alone. Wow...TGFDReplyDelete
Yeah, hard to believe, right? Unfortunately, too many MS patients find themselves abandoned by those they once relied on. I read some research about the divorce rate among couples in which one was diagnosed with MS, and it was distressingly high. The disease touches not only the patient but also all who love them.Delete
Wish i had your gift of writing, reading your work always lets now I,m not alone in this other world we live in.ReplyDelete
Thanks for the kind words, and you're very welcome. When wandering down a dark path, it is very comforting to see candles in the windows of the houses lining the way. It's important to know that you're not alone.Delete
Great one Marc. Your writing is taking a life of its own and is growing with each post. You say what we all feel but say it better :-). Wishing you well bro'ReplyDelete
Thanks, Loobie. I know you've been dealing with this crap for a long time, and that it has rarely been easy. Keep fighting the good fight, sending well wishes right back at you.Delete
Thanks Marc, as everyone before me has said your writing is finding words for us all.ReplyDelete
Could you please write about some of your experiences where for instance with Photography you were able to connect with you passions in active life. I am at the crossroads so to say, where my mobility is going to change my destiny. My interests will need to be rekindled, reevaluated and reborn. I spend time with many in my MS community who like all of us are looking for purpose, our purpose and I beleive your experiences will show how adaptable the human experience can be. It's not about 9 to 5 it is much, much more than that.
Take care my friend,
That's a very good idea for a blog post. I too am reaching a point where my progression is forcing me to make some changes, and such junctures are always difficult emotionally. The problem is we are dealing with a constantly moving target, once we get comfortable in a physical state, it almost always changes.Delete
It's definitely not all about 9-to-5. Each of us has way more to offer than that.
Thanks for being a voice for me and giving me words, People think they can write (AAARRRRGGHH- too many blogs!) but you really can. Thank you.ReplyDelete
Thanks for the high praise. As for all the other blogs, I haven't come across many that don't offer some unique insights. Of course, these days there are so many it's impossible to look at them all, but each one is both the offer of and a cry for a helping hand. It's all so touchingly and infinitely human…Delete
That anonymous above is me - kickerReplyDelete
i'm one of those who tries to write a blog about my experience of MS, but i find it so difficult to put that experience into words. and certainly none as eloquent as you seem to consistently be able to do. this post especially will be shared by me, and will, i hope, be read by every muggle out there. thanks.ReplyDelete
Thanks for the generous words. Living with MS is an especially difficult topic to tackle, because everyone's experiences somewhat different, and the disease itself is a moving target. I find it helps to try to strip the experience down to its basics; all of us are dealing with the prospect of potential paralysis, even though every patients' journey with the disease may follow different paths.Delete
We've also all dealt with a tremendous break with the arc we expected our lives to take. This is a very powerful and transformative experience that renders profound changes in the sense of self. There is much that can be written about this experience.
I believe that every blogger helps their fellow patients (and the Muggles who love them) by attempting to reach out and have their voices heard. Thanks for being a part of this mass shout.
Thanks for writing this brilliant blog. Once again you made me feel a little better. This unwanted companion - that we share - has been rough on me this last year and your blog has helped me out of the suck many times.
Greetings from Finland
It's gratifying to know that my words have helped others stuck in circumstances similar to mine. Like you, the disease hasn't been especially gentle with me this year, but all we can do is keep on fighting and try our best to live as full a life as possible.Delete
You may have already seen this video, but I feel it relates to what you have spoken about. You have hit the nail on the head with finding contentment and maybe even happiness ;) Along with our perceptions, we can all choose, with practice, to find a place that allows us to continue on with our day.
“Dead yesterdays and unborn tomorrows, why fret about it, if today be sweet.”
― Omar Khayyám
Truly grateful for your blog,
David, thanks for the link. I had seen the video before but not in a number of years. It's an amazing presentation, and touches that area where science meets metaphysics, a zone which I find unendingly fascinating.Delete
Love the quote, also…
Marc, you surely nailed it (yet again). I'm still working on that diminished existence part. I still want to do things I no longer can and, to me, that seems a diminished existence. I have to learn to embrace the changed existence and go with it.ReplyDelete
Well, you've hit the nail on the head also. One of the major disconnects we find when trying to deal with our disease is the desire for things to be the way they were, and the reality of the limitations that have been forced upon us. We must learn to maximize the potential of what is left to us, but the equation can change on a daily basis, and requires constant vigilance. It's definitely okay to let yourself take a break every now and then, but not to make a habit of it.Delete
Another great post Marc. I tend to view MS as a black hole, slowly but surely sucking my universe in.ReplyDelete
MS can definitely suck the externals in, but the internals are up to you. Of course, that's a gross oversimplification, and much easier said than done, but in general it's a strategy for survival.Delete
Very interesting thoughts. May I comment on what happened on my side :ReplyDelete
My partner of 23 years left after one year. The more I entered into the handicap, the more my "good old" friends became rare, strangely, I concluded that they did not want to have a disabled person in their circle, had not chosen such a friend, they became afraid of me as I represented older age and death. On the other side, some members of my family, whom I was not specially close to, contacted me and came to visit on a regular basis. My kids were wonderful. Finally, new friends, who had always known me as handicapped, were rapidly closer and more understanding than people I had sometimes known for more than 25 years. Strange... it required heavy readjustment on my side as part of my person was somehow defined by the people I hanged around with. I had hard times sometimes. Changes towards a new life...
I once saw a study about "loved ones" behaviour in case of a heavy diagnosis : on the given period of the study 11% of the "normal" couples would split. This went up to 30% if the woman was diagnosed with such diseases as breast cancer or MS, and down to 3% if the man in the couple was diagnosed (sorry, don't remember what was the equivalent to breast cancer for men !), pointing how men are ... courageous !
Certainly, there are folks from our healthy lives who simply can't deal with the changes the disease brings to us. It may be that they can't stand to see us diminished, or that we are a reminder of their own potential frailty, or that they just weren't very good friends in the first place. As you note, though, in many cases we find others to fill the void. I tried to hold no animosity towards those who have opted out, as in some cases it may just be that it pains them too much to see someone they care about deeply and stress. Might as well give them the benefit of doubt.Delete
I've actually read surveys which put the divorce rate much higher than the one you cited. And yes, it always seems that the men leave for more often than the women do…
A truly beautiful post Marc. Your last paragraph sums up the task at hand/heart/mind so well.ReplyDelete
Thanks, glad that my sharing thoughts have found so many kindred spirits.Delete
Thanks, Marc , for yet another spot-on post. With your permission, I'm sending this on to my family and friends. Your description of the first feelings after diagnosis are so much more coherent than anything I've even attempted to convey. I've been diagnosed 3 years, now, after some 20+ years of symptoms, and I'm still trying to wrap my head around this. Thank you, thank you.ReplyDelete