15 Years a Progressive MSer

You think back and it seems like a million years ago, or yesterday. The first Sunday of March 2003, an unusually cold day for that time of year. Despite the winter chill, you decide to take your beloved Labrador Retriever, Stella, for a long walk along the Hudson. After strolling about 2 miles on the paved path running next to the river, you turn homeward. You don’t return the same way you came but instead choose to take the city streets back to your wife, waiting in your apartment.

On the way home, you slowly notice that your right knee is buckling backward, causing a peculiar limp. It’s not painful as if with a sprain or bruise, but instead, a weird hitch that seems caused by weakness within the knee itself. As you walk further the limp becomes more pronounced, and the inside of your head starts feeling kind of fuzzy. It’s all very strange and unsettling. You know in your gut this isn’t normal, that something fundamental has changed.

About two months later, after a disconcerting blur of doctor’s appointments and medical tests, you’re given a preliminary diagnosis of multiple sclerosis. It’s one week before your first wedding anniversary. You’re sad and disoriented and angry and frightened, very frightened. Though you’re still mostly ignorant about the disease itself, you instinctively know you’ve reached an unhappy line of demarcation. There will now be a time before the limp and after. Little do you suspect how stark a marker this will become, a deep impenetrable moat separating two entirely different lives, both lived in one lifetime.

Now, 15 years later, your old healthy life is receding faster and faster into the haze, like a dream remembered crisply upon awakening but lost to the ether by noon. After the limp appeared the disease hit fast and hard. No relapses and remissions for you, only progressing disability, a creeping paralysis. Less than four years after that cold day in March, the beast forced you to “retire” at the ripe old age of 43, just when your career was poised to go parabolic. A year later MS planted your a$$ firmly in a wheelchair. Fast forward 10 years to the present and your right side is dead weight. Your declining left side insists on following the same horrid script written by your right, like a bad sequel to a terrible movie. Somehow, on most days you outwit despair, focusing on whatever glimmers of hope the gaping abyss before you can’t hide. On other days the darkness wins out.

You remember that years before the limp you’d experienced a series of odd symptoms that defied explanation. In 1997 the doctors thought you might have a rare form of lupus, but the medical minds could never arrive at a conclusion, and during the five or six relatively quiet years after you pushed any concerns aside. On the whole, that would make it 21 years since things started going haywire. Your disease could be getting its bachelor’s degree by now. A BS in MS, or, more appropriately, a BS in BS. As an adult, you’ve been sick longer than you’ve been healthy. The gods must be crazy, and an indifferent universe could not care less.

You ponder all the things these wearisome years have taught you, from nuggets of wisdom to knowledge you’d rather not possess. You’d have been perfectly happy to live out your days not knowing that for some reason you quickly fall asleep in the noisy, claustrophobic confines of MRI machines, that you’d rather have a spinal tap than dental work, and that you have an innate ability to grasp complicated medical concepts and translate them into plain English. As hidden talents go, you have been fine with leaving that one undiscovered.

Then again, you always had a knack for cutting through the bullsh*t, and the reality is that most medical jargon exists primarily to confuse the public and hide the fact that large parts of the purportedly gleaming modern medical miracle machine are in reality constructed of chewing gum and chicken wire. You would relish being happily unaware of the fact that for some physicians medicine is indeed a calling, but for many others it is primarily a business. Just like any other job, some are very good at practicing medicine, but others just plain suck. What do you call somebody who graduates from medical school with a C- average? A doctor.

All the downtime that comes with being a cripple has provided you ample opportunity to dissect your long-lost healthy life and graced you with perspectives you likely would have otherwise never gleaned. You remember with deep regret all of the healthy time wasted on the small stuff, and you now see with crystal clarity that almost all of it was small stuff. If you could only have back half of the sleepless nights and anxiety-filled days vainly spent lamenting lost loves and missed opportunities. In retrospect, you see that new romances and promising circumstances inevitably came your way just as soon as you reluctantly let go of your negativity and allowed room for new people, places, and things. Our emotions are born of us, not we of them, and just as you now most often choose hope over despair, you could then have decided to seek contentment rather than wallow in self-imposed neurotic torment. Over the long run, most people are dealt an equal number of good and bad hands; it’s the way you choose to play them that determine the winners and losers. But just as youth is wasted on the young, health is wasted on the healthy.

You think of all the incredible souls you’ve met since your diagnosis, other MSers coping with the disease with their own mixture of poise and grit in the face of mounting indignities and physical insults. They have inspired you, commiserated with you, laughed and cried with you. You rue the toll you’ve seen the monster take on so many. You grieve for those who gave it their all but eventually succumbed. You remember each of them with perpetual sadness at their passing and mounting anger that more has not been done to put an end to this scourge. Treating but not curing is a great business model, but far too many human beings are left withering on the vine as the MS industry seems quite content with this paradigm, it’s coffers overflowing.

The ripple effect of the disease is insidious, and you feel guilt at the impact your illness has had on your friends and loved ones. You are keenly aware of the palpable emotional pain felt by your old mom and dad when they see or hear about your ever compounding struggles, of the hidden disappointments experienced by your incredibly loyal wife who has watched her own dreams of a future filled with romance and adventure pilfered and plundered, of the unreturned emails and phone calls from friends left wondering why you choose to remain out of touch even though you hardly leave your apartment. You have no real answers for them, except that on some basic level you now understand why gravely wounded animals retreat into the brush to meet their fates alone.

Most 15 year anniversaries warrant some sort of celebration, but you don’t feel much like celebrating this one. You are grateful to still be here and to retain the functionality to write this essay, but having been struck with this disease is something you will never, ever get used to. Each day you awake to the shock that your dreams are not reality and your reality is not some demented dream. In instants without distraction, you wonder how much more of this you can take and even how much more of this you want to take?

You somehow find ways to occupy yourself despite a growing alienation from the healthy world that surrounds you. You fight the envy you feel for those who walk and jog and gesticulate, utterly oblivious to their incredible good fortune at simply being able to do so. You listen to those tied in knots by troubles that you now realize are mere fripperies, and fight the urge to scream that you’d swap their plight for yours in half a heartbeat. You are not proud of these feelings, but there they are.

Most of all, you simply persevere. You try to make sense of it all, to tease some meaning from these last 15 years, to convince yourself that there is some method to this madness. You wonder if some long-ago actions taken or not taken, or decisions made or not made, might have led you down a path free from MS. You mourn what might have been, what almost was. You dig for nuggets of hope and reasons to believe, even if that means mining through vast mounds of existential detritus.

Time and time again you ask yourself and the universe, “what’s the point?”, until you finally realize that the real question is “what’s the point of asking what’s the point?” You decide that if there are any answers, they are beyond the scope of your comprehension, and then you turn on the latest episode of The Walking Dead and start asking the really important questions, like how in the world you would charge your electric wheelchair during a zombie apocalypse? And, if you were to become a zombie, would you suddenly be able to walk? Or would you be one of The Rolling Dead?

Priorities, friends, priorities…

This article was originally published on Marc’s website on 03/11/18 and is being featured on MultipleSclerosis.net with his permission.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (13)
  • Lenschmidt
    8 months ago

    Love you Marc, love your writing, love your perspective,

  • Marc Stecker-Wheelchair Kamikaze author
    8 months ago

    Thanks so much, flattery will get you everywhere…

  • potter
    8 months ago

    You hit on many of the feelings I experience, especially guilt and hiding away like a wounded animal because the outside world is exhausting and overwhelming. Your cognitive abilities to write such a great piece of work must still be functioning at a high level. Mine are slowly slipping away. I had my 11th year anniversary pass recently without any notice, my neuro thought I had MS for many years before my diagnosis. I had a GP who made C- in medical school that wouldn’t listen to me. Your writing always brings me great pleasure, I am glad you are still able to write. Potter

  • Marc Stecker-Wheelchair Kamikaze author
    8 months ago

    Hi, Potter. Yes, this disease is really something else, isn’t it? I was having symptoms for many years before my diagnosis as well. Sorry to hear of your struggles with the beast, and if you know my writing I won’t condescend to you by offering any vapid platitudes. My best advice is to just try to take it day by day, hour by hour, minute by minute, second by second… Thanks for your comment.

  • Julie
    8 months ago

    Thank you for your essay. So many things you stated have also run thru my mind time and time again. I just couldn’t put it into words that others could understand as you did.

  • Marc Stecker-Wheelchair Kamikaze author
    8 months ago

    Thank you, that is very high praise. I only wish the thing we shared was far more pleasant, and my blog could be about how to spend $5 million or something along those lines. But I guess people with that problem don’t need to share their experiences as much as we do. So many times a day I am struck by all that has happened, and the only thing I can do is shake my head…

  • stumblingbumbling
    8 months ago

    Zombie’s don’t want our brains. we’re safe

  • Marc Stecker-Wheelchair Kamikaze author
    8 months ago

    Hey, thanks, I hadn’t thought of that. At least that’s one worry I can cross off my list, the prospect of a zombie apocalypse can’t keep me up at night anymore…

  • weezy
    8 months ago

    Thank you Marc for writing down what so many of us feel. My MS is RR with a bad relapse 5 years ago that forced me to stop working at my life planned and achieved occupation and become one of the many permanently disabled MSers. I have had MS for 18 yrs and and work hard every day that I’m not too depressed to continue moving by attending a swimming pool exercise class 2 days a week, and walk at the mall on the other days. I am battling double vision that seems to be getting worse. I am trying some prescription glasses with prisms now.
    Again, thanks for the article. I helps to know I’m not the only one with the same feelings!

  • Marc Stecker-Wheelchair Kamikaze author
    8 months ago

    So sorry to hear of your struggles. It’s great that you are still able to muster up the strength and courage to go out there and fight your disease by exercising. That must help your state of mind, as well. My wife has problems with double vision (not MS related), and she’s using some prism the film that goes on the lands of her glasses. Next step will be the prism lenses… Thanks for your comment.

  • Spratt
    8 months ago

    Thank you for this amazing article! Mine is remitting MS, but having an especially hard day today, so this was perfect timing. The emotions part of this article was particularly encouraging and thought-provoking. Again, thank you.

  • Marc Stecker-Wheelchair Kamikaze author
    8 months ago

    You’re very welcome. It’s quite gratifying to know that my words are somehow reaching other people who understand. Though each of us must battle our MS individually, in a sense for all in this together…

  • Alina Ahsan moderator
    8 months ago

    I’m glad you enjoyed this article and found it encouraging, Spratt. Thanks for being part of the community!
    -Alina, MultipleSclerosis.net Team

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