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Multiple Sclerosis is an undeniably destructive force. To various degrees, which change from patient to patient, the disease picks apart bodies, careers, and relationships, intent on scrambling the numberless pieces that make up the jigsaw puzzle that is each human being it touches. As the malady disrupts a patient's physical body, it also forces those afflicted with it to deconstruct themselves emotionally, spiritually, and philosophically as they adjust to the changes wrought by MS. But this deconstruction also forces the patient into a reconstruction, as they gradually shed the self-identifications and the societal expectations that had formally defined who they were, and replace them with a new sense of self that conforms to the ever-changing reality of living with a chronic, progressively disabling illness.
The speed with which this process occurs varies dramatically from individual to individual, as the mutable nature of MS means that no two patients experience in the disease in quite the same way. Some can live with the sickness for decades and suffer relatively few setbacks because of it. For these folks, the changes within may be as subtle as the disease itself, barely visible on a day-to-day basis, but more apparent when looked back at from year to year or decade to decade. Other patients, like myself, are hit hard by a more aggressive form of the illness, and adjusting to the physical and mental challenges it imposes requires almost daily manipulations of the mind and body. MS demands a metamorphosis, not only from physically able to physically disabled, but from who we were to who we are becoming.
Every person, sick or well, goes through fundamental changes over the course of a lifetime, molded by mounting age and experience. Chronic disabling disease acts as a multiplier for this universal experience, compressing the time span and focusing the intensity of adjustment. The eight years since my diagnosis have seen me undergo changes of seismic proportion, as the landscape of my inner and outer lives have been rocked to a degree I hardly thought possible. Just as residents knowingly living in an earthquake zone are nevertheless shocked when the ground shifts and buildings tumble, people shaken by serious illness are stunned by their being hit with adversity, although we are all aware, even if in the most abstract sense, that accidents, illness, and misfortune are tripwires strung haphazardly across the road of life. Multiple Sclerosis is the kind of horror that happens to other people, we think, not to us. It's a comforting delusion.
After absorbing the initial shock of my diagnosis, for a while life proceeded on almost as if everything were normal. My internal dialogue was changing, as questions about my new disease and the impact it would have on my future were always being sifted, sometimes consciously, sometimes tucked away in the mind's recesses. Initially, my daily routine hardly changed, just as most of those aboard the Titanic, having registered the initial shudder of the ship hitting the iceberg, drank their aperitifs and danced their waltzes, for a few minutes anyway. I got up every day, kissed my wife, showered and dressed, walked the dog, and went to work. There were the usual dinners out, shopping on weekends, socializing with friends. Yes, there was an injection to give myself every few days, but even that held the promise of a sustained normalcy and helped maintain the illusion of control. Soon though, the ship started taking on water; the slight limp in my right leg got worse, and my right arm became progressively weaker. The descent had begun.
Just as my physical disabilities all too soon demanded attention (an ankle brace, a cane), my sense of self screamed out for contemplation. What had sometimes been a swagger now became a foot dragging limp, the dearly held illusion of immortality replaced by the reality that I was now physically defective and was very likely only going to become more so. I wore a brave face, proud of the fact that my performance at work didn't falter, even as my body did. My well practiced neurotic antics suddenly didn't seem so endearing, and the worries and anxieties that had once consumed me were now rendered trivial, as if a Woody Allen character were dropped into a concentration camp.
This was a new and frightening world I was abruptly required to navigate, filled with its own jargon and customs, a foreign realm of doctor’s appointments, medical procedures, and ever-increasing physical weakness, a place of changed priorities and heartfelt losses, a domain that imposed humility and was best traversed with a keen sense of the absurd. Thrust into this Twilight Zone, I was a character in search of a script, learning my lines on the fly, the psychological and philosophical square pegs that had conformed neatly into the cutouts of my former self now being forced to fit into round holes, requiring them to either be whittled into shape or simply discarded. This disease of the body was also a crisis of the soul, but through the churning turmoil I started to glimpse flickers of clarity, faint at first but soon better defined.
A key moment came when, less than four years after my diagnosis, the disease forced me to go on disability and "retire". Although this cleaving from the working world was jarring and disorienting, it didn't seem as hard for me as it does for some others I've known who've endured a medically forced retirement. Despite the fact that I had achieved a respectable level of success in a highly competitive business, I'd never felt entirely comfortable in the roles I played during my career. I always liked telling people what I did ( TV, video, and DVD production) more than I liked actually doing it, and there were long stretches of my working life during which I felt I had strayed entirely off of my path, though I wasn't sure what that path might be.
I'd always had literary and creative aspirations, and the everyday grind of life working within a corporate organization, even one dedicated to creative endeavors, was at best an ill fit. As a youth I'd sworn that I would never get drawn into the workaday world, but like so many who make such declarations, circumstances dictated otherwise. Now, although the details certainly were less than ideal, I found myself free, somehow liberated in spirit by the very thing I dreaded most, the insidiously increasing physical disability that was imprisoning my body.
In a case of addition by subtraction, in being forced to let go of the old me I was able to discover the person that lurked within, the person who I might yet be, long buried under years of socialization, expectation, responsibility, and requirement. Like a chef preparing a reduction, intensifying the flavor of a liquid by boiling off its excess, I found that the forced process of peeling back the layers of the person I had become allowed me to find within a truer self, the me that had fed the simmering yearning I'd felt for most of my adult life.
Somehow, Multiple Sclerosis (or whatever I have-click here) thrust me, quite violently, onto a path I'd long given up for lost. I often wonder whether or not I would have still been stricken by MS if I'd had the guts and fortitude to find or fight my own way back onto my path, or if the disease was a hammer blow delivered by a universe intent on getting me back on track. Either way, though I despise the disease and the physical toll it continues to take, I like the person I've become much more than the person I was not so long ago.
It would be nice if the disease would relent long enough for me to fully explore and enjoy this new old road, but over that I have little governance. I can advocate for and educate myself, but the actual healing is out of my hands. The only control I do have is to take the journey moment by moment, focusing on the good contained within each passing now, and accepting the bad as a particularly unpleasant traveling companion. With each day there is night, with each peak there is valley, for every gain there must be loss. Such is the way of nature; such is the way of life…
a wonderful post. Keep up your strength, and explore that new old road as much as you possibly can.
Personally, I've been diagnosed with MS for over 10 years now, but luckily seem to have a pretty mild form of RRMS. Yet, the impact of having an (up to date) incurable disease made me carefully choose my professional venues and consider my own road of life with great care. Wherever it continues to lead, all we can do is live life to the fullest - and that does not depend on complete physical abilities alone.
Keep up your good work - it always is a pleasure to read you, despite the sour topic of dealing with multiple sclerosis...
Best wishes from Berlin, Germany -
Your account of your remarkable journey is so well told. It is indeed so capable that it belies the serious physical disability of the person telling the tale. That is a testimony to the amazing staying power of who we are.ReplyDelete
You are a true inspiration. As a sufferer of this unrelenting disease, I am constantly looking for ways to understand what I'm going through. Reading your blog is one of my healing avenues. Thank you for a wonderful read.ReplyDelete
i, too, sit and wonder about being struck down by this disease... i wonder if it is the universe's cruel wake up call to find my true self, my purpose...i'm only 6 months in and have not yet even completed the journey of acceptance...does anyone really reach that level? so much to think about...
This is the first time I have ever posted a comment on any website but your reaction to "retiring" I find interesting. I was recently fired due to my MS and I'm in the middle of an ADA lawsuit. Acknowledging my M.S. was something on my to do list. Between work and raising a family I did not have MS penciled in to my day-planner and it had to be added to the un-ending list things to do.ReplyDelete
Now faced with no job, financial worries, and no way to ignore my MS by other priorities, anger has become a constant companion.
Your blog I came across quite by accident as I have never thought about or had time to spend on researching MS websites. I find your balance of anger, determination and humor reassuring. I have a long way to go before I will feel I can take that one deep breath since having the wind knocked out of me, but in odd small ways, I'm making progress.
Reading your blog provides me with resources to understand and learn about medical advances being made. There is a lot of garbage out there to filter and I have its easier to let some of the filtering be done through someone like you. So after all this is said and done, thank you for the heavy lifting of garbage filtering for all of us and for your sense of humor. And maybe someday I'll be ready to add more comments with my name. Again, thanks for all your time and energy in providing information, emotional honesty and humor for all of us who found MS penciled in to our lives without checking with our schedules first.
Beautifully written, Marc. You seem to always know how to get to the bottom of what we're all feeling in such an eloquent way.ReplyDelete
I have been thinking about this very thing in my own life and even have "Working on re-creating self. What a peculiar endeavor." on my Facebook page.ReplyDelete
I am not alone. Thanks, Marc!
Beautiful Marc! Your words are true!ReplyDelete
Wow...This is definitely one of your BEST! As always you have put into words so perfectly what I myself am experiencing. Thank you once again for helping me rediscover myself and find the strength to deal with this insidious disease. I only hope that we both persist long enough to enjoy this new found clarity.ReplyDelete
i've called it "the sledgehammer intervention." And unfortunately, i had not been able to hear the whispers of my soul and probably left no other option to right my course, as well.ReplyDelete
we try to make sense of it all, trying to understand... in truth, i do believe the Universe is a safe and compassionate place. so i am left to trust that though rigorous and heartbreaking at times, this progressive form of MS must be on some level, also expeditious. if i follow every feeling, every thought courageously without turning away, the explanation always comes up EXPEDITIOUS.
you described it so well for us to receive it, from the inside out. i loved your use of metaphors. thank you...again.
great article is always Marc. I just spent four days in the hospital due to a UTI that turned very ugly. it was a MRSA bacteria. That is like adding insult to injury. I seem to be recovering and am at home but still on a strong antibiotic and further sampling to be sure this week. in addition to that I am now diabetic. Wonderful week eh? I am trying to endure them and stay positive it is hard at times as you know. It's good to come and read. My mind is with the people of Japan. There is certainly a great concern that two nuclear reactors will melt down. Makes my problems seem insignificant.ReplyDelete
Great post, Marc! I'm certainly sorry that your health took you down its dark and twisty road, but I'm so glad that you've been able to turn it into something wonderful. And we're all lucky that you've put your literary aspirations to good use on this fabulously written blog! Any plans for a book?ReplyDelete
So perfectly put, Marc, as usual. You have found that balance between being overwhelmed by circumstances and making them work for you, even if it is shaky sometimes. I don't believe in a God or a universe that deliberately hurts us to get us on the right road, but you do have to wonder.ReplyDelete
I agree with Kayla, a book would be such a gift to us.
Frank-thanks for the kind words, and I'm happy to hear that your RRMS has taken a mild course. As you say, though, the impact of any serious diagnosis does force one to shift focus and choose carefully. Good luck as you travel down the road…ReplyDelete
Anonymous-I've noted in other posts that this disease can steal everything but the kernel of a person, that spark that makes an individual different from the other 6 billion or so humans on the planet. As physical disability mounts, it becomes all the more important to feed that spark.
Darcy-it's very gratifying to know that my words could help even one other person. Though I hate this disease and what it's done to me, it has shown me there can be no greater gift than reaching out to help others share the load.
Sherri-it's not so much about reaching that level, but about the journey getting there. MS leaves us in an ever-changing state, so I'm not sure that acceptance can even be expected. Attempting to accept may in fact be the point…
Anonymous-yes, whoever crammed MS on to our already busy to do lists deserves a good smacking. Thank you for your immensely complementary words, it's very gratifying, therapeutic even, to know that I may have lifted even the smallest portion of the tremendous weight that you are carrying. It does sound like you have a lot to be angry about, and there's nothing wrong with that. Acknowledge it, feel it, but always remember that your emotions are a product of you, you are not a product of your emotions. The energy of anger, used correctly, can propel you to do whatever it is you need to do to rectify her situation, but turned inwards can be very destructive. Be careful.
Kathleen-thanks for your very kind words.
Boom-here we are, re-creating ourselves the same time. In the end, we may wind up being Frankenstein, and the Bride of Frankenstein, but we will indeed have been re-created.
Charlie-Amen to that, brother. It is a kick in the ass that it took a terrible illness to tear away the veil and find some clarity. All we can do is try to take advantage of it as best we can given our current circumstances, and really, that's all anyone can do, sick or well…
Aliyah-"the sledgehammer intervention"-perfect. It does indeed take courage to not turn away from some of the truths we are presented with. It's very important to practice honesty, and self honesty is the hardest form of all to master. It does seem like we're being given a crash course in what's important, and the gentle whispering that was so easy to ignore when healthy has now become a roar. Well, roar away, I now have enough time on my hands to listen.
Bubba-very sorry to hear about your recent hospitalization. It certainly sounds rough, I'm happy that you're home and recovering. I know all too well how difficult such recoveries can be, so give yourself the time to properly heal. Sometimes it's impossible to state positive, but it is possible to not turn negative. It's okay to be stuck in neutral for a while. My thoughts are with yours for the people of Japan. In the grand scheme of things, our individual lives don't even amount to a grain of sand. In 100 years, there will be all new people…
Kayla-I'd certainly be open to any publisher who would be interested in putting some of these essays into book form. Would be nice if they'd include some of my photos as well. I'd feel a bit conflicted about making money from my experiences with this disease, though. I suppose if I used that money to do some good, that might square things. Thank you for your very generous words.
Marie-that balance certainly can be shaky sometimes. Our extremely limited human intellect is far too puny to divine the workings of whatever it is that is greater than us all, whatever name it be given. Sometimes you just need to float on your back and see where the current takes you…
back again Marc. My UTI came back so it was back to the ER in the red and white bus. It was not as bad as the last time so they gave me an IV antibiotic and set me up in a nursing home for 12 days. That is about 12 1/2 days too long! Do not go to those type of places. They call them care centers, I call them neglect centers. I have escaped and then back home. this just doesn't get any funner. I am back at home only nursing a couple of small bedsores. We'll get through this yet. I cannot believe how these people in hospitals and nursing homes cannot understand that parts of your body just did not work. Can you transfer? Can you move your leg? You want to just hit them. And try to get them to feed you or give you a drink, you would think you just ask for $1 million.ReplyDelete
I just got back from round two with my UTI. This time they did not admit me to the hospital but sentenced me to 12 days in a nursing home. I definitely do not suggest that! More antibiotics and being ignored and neglected. I still have a home health care nurse to keep an eye on a couple little pressure sores on my butt. I found out my dog had bit the air nozzle off of my seat cushion and it had been flat for several months. Anyway I am back home with a much improved attitude for that. Nursing homes nor hospitals understand paralysis of any limbs and the inability to move or transfer. I am getting really tired of trying to explain it. Talk about de-humanizing just go to a nursing home and you will be deconstructed in every way imaginable.ReplyDelete