Monday, July 5, 2010

Why Me? Well, Why Not Me?


Image by Oberazzi via Flickr

Though I've never seen any research studies proving this, I'd wager that one of the most commonly asked questions by those struck with chronic illness is "Why me?" They may not express it very often verbally, but using myself as a guide, I'd say this little two word query crosses the mind of most patients several times a day. I find that it often leaps to the forefront of my consciousness as I watch the evening news, with its daily parade of murderers, child molesters, and assorted miserable scoundrels, all sauntering along under their own power without need of a wheelchair, cane, or brace. Certainly, the universe must be upside down. Granted, I'm no angel, but the fact that Charles Manson can do jumping jacks to his heart's content, and I'm stuck relying on a set of wheels sprouting from my backside to simply get across the living room is just plain wrong. Is there no justice?

Well, the short answer is, no, there is no justice. Justice is a human construct, an invention we use to placate the need we have to see perceived bad punished, and good rewarded. The question of whether or not we live in an ordered universe has been a subject of puzzlement for mankind since we developed the mental capacity for self-awareness. My Zen leanings have me wanting to believe that somewhere a universal accounting is taking place, but there's a considerable part of me that can't shake the notion that this is all just one big jumbled game of pickup sticks, a tangle of randomness and happenstance in which we are caught up like the silver ball in a pinball machine, being buffeted from bumper to bumper. Still, shoving all rationality out of the way, the mind screams insistently for an answer, why me!

I get my hair cut by a delightfully wacky Thai woman who practices a strange sort of evangelical Buddhism. I've always had a knack for attracting the eccentric, most of whom I develop some real affection for, this lady no exception. She told me that her meditations have revealed to her that I suffer from Multiple Sclerosis in this life because in my past life I was an alcoholic who was cruel to animals. She also told me that my wife Karen is stuck as my caregiver this time around because we were together in my previous inebriated incarnation, and Karen was the dastardly miscreant who kept me swimming in booze. Due to these previous shared misdeeds, we're both paying the piper in our present manifestations. Her advice: stay away from the firewater, and carry around breadcrumbs to feed any birds I encounter on my wheelchair excursions, committing some random acts of kindness to make up for whatever heinous violations I visited on our furry and feathered friends in my previous life. I'm not quite sure I buy this story, but my mind shrieks for an answer to "why me?", and, lo and behold, the universe has provided me with one, along with a pretty decent haircut. So there.

A funny thing I've noticed about human nature (at least, this human’s nature) is that when awful things befall us, we're quick to ask "why me?" but when fortune smiles upon us, we don't question our deservedness, or the astounding wisdom of the universe. Back in June, 1994, I won $14,000 in the Florida lottery. The night before, I'd gone shopping in the supermarket on my way home from work, and then realized I'd forgotten to buy some butter. I stopped at a grimy little convenience store near where I lived to rectify the situation, and while waiting on line to pay for my item, I got stuck behind a guy buying what seemed like hundreds of dollars worth of lottery tickets. Figuring what the hell, when I finally made it to the cashier, I spent a buck on a Fantasy Five ticket, letting the lottery machine pick my numbers for me. The numbers on the ticket read 10, 15, 20, 24, and 25. I made mental note of the relative symmetry of the randomly generated numbers, and put the ticket in my wallet.

The next day, I started feeling sick at work (the result of the convenience store butter?), and went home soon after lunch. Once home, I started to climb into bed, newspaper in hand, when glancing at the front page I noticed that the Fantasy Five winning numbers included 10, 15, 20, and 25. Relatively sure that those numbers matched the digits on my ticket, I reached for my wallet to see just how close I'd come to winning the jackpot. I quickly confirmed that four of the numbers on the ticket matched those listed in the newspaper, and saw that the fifth number was 24. Checking the newspaper, I was shocked to see the number 24 nestled between the 20 and the 25. I had won the big one, all five numbers on my ticket miraculously matching the winning numbers listed in the newspaper. A quick call to the phone number listed on the back of my lottery ticket confirmed that I was indeed a winner, and I was told that if I made it to the local lottery office before 3 PM, I could have a check that day. My illness mysteriously lifted, I was soon on my way to pick up a nice big juicy check for over $10,000, the amount of my winnings minus the mandatory sacrifice to the tax man.

I'd imagined winning the lottery millions of times in the past, just as I had imagined being told I had some dread illness innumerable times (I was a very accomplished hypochondriac). My reactions when both situations passed from fantasy to reality bore little resemblance to the scenes that had played out in my mind. Upon winning the lottery, I wasn't shimmying around my apartment, caught up in ecstatic convulsions as I had pictured. I had a good laugh, called a friend to tell them of the news, and then got in my car and picked up my money. When told I had Multiple Sclerosis, I didn't collapse sobbing to the floor or sink into a sudden and permanent state of catatonia, as I had so many times in my mind, but experienced a stab of dismay, a sudden recalibration of my life's priorities, and a resolve to fight this freaking thing with everything I had. Perhaps because of my hypochondria, my diagnosis felt almost like a confirmation of something I'd known my whole life, that I was indeed sick. In retrospect, maybe I wasn't a hypochondriac after all, maybe I innately sensed that something just wasn't right.

Theoretical physicists, starting with Dr. Einstein, have known for quite some time that we live in a universe whose ultimate secrets lie far beyond our powers of comprehension. We can seek to tease apart the intricacies of the universe, but on a very basic level, though we may someday be able to describe them, we will never truly be able to experience them. The most current hypothesis, which draws closer to being proven with each new collision of speeding electrons in a particle accelerator, is that we live not in a universe but in a multiverse, the possibility of infinite parallel universes existing alongside our own appearing ever increasingly to be reality. We very likely exist within a framework of 11 dimensions, of which our puny little minds can only perceive three. There is much that is unseen, but very near.

Perhaps then there are answers to "why me?" somewhere amidst the vast incomprehensible, but they will forever be beyond the powers of our minds to grasp. As my diagnosis with MS and my winning the lottery illustrate, extremely unlikely events happen to each and every one of us, and our efforts to discern some deeper meaning or some recognizable pattern from that which befalls us have about as much chance at success as a beagle has at mastering calculus. Ultimately, the answer to "why me?" is probably best answered by its corollary, “why not me?” Good and bad are meted out to the deserving and undeserving both. Rather than struggle to understand, we must accept, and in that acceptance find the inner strength that is the fuel for the hope that drives the will to fight for that which MS has taken from us, and triumph, if not in body, than in spirit (but hopefully in body).

Be strong, my friends. The answers lie within.

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  1. What delicious existential angst! Dontcha just love to roll around in it like a freshly bathed poodle in a mud puddle?

  2. Admittedly I've contemplated personal involvement in manifesting MS, but a "What Now" thinking position has served me far better.

    best, Barry

  3. I loved this post, and kept returning to read it this morning. I somehow spent the recent holiday weekend in some very odd metaphysical ramblings about illness myself--some of them a lot like 'bumper cars with Zen.' They were along the lines of "which me?" with lots of "whys" thrown in. I think I'm personally striving for the "not-me," and "whatever" level, but the journey is interesting. Your blog makes it much more so. Thanks for being so articulate, honest and refreshing in talking about MS.

  4. Well put Marc. I now am at the "It is what it is" stage and try to see the humor in it. Love your blog and wish I was as articulate. Be Well.

  5. Love it, love it, love it.

    Jealous, jealous, jealous.


  6. Marc,

    A better question is "why not me"? I am not saying life is always fair. I am not a Zen master but believe in a God that cares about me personaly. When I get into the "why me" stage which is perfectly natural reaction we all face with MS. I try to stop myself and ask would I wish it on someone else? and if so then who?

    I am guessing that you would much rather be in your shoes than your wife have to try them on for a day. When I think about all the people in my life it is much easier to say "why not me".

    We have been given this monster/burden to carry, it doesn't mean that we have to like it. It means that our perspective has changed, our dreams have changed. Not the important dreams. MS has taught me that Joy, Laughter, Pain, Sorrow, Love, Caring are still with me, still a part of me. Walking my daughter down the aisle at her future wedding may not be possible when that day arrives, but it doesn't mean that I will not be celebrating her marriage. It will mean I'm glad it's me and not her. I pray I can keep this attitude going, not just for me but the people I care about. We have an impact on people around us everyday, sometimes it puts us outside our comfort zone but people are worth the risk everytime.

    Thanks for the post.


  7. Close to a decade ago, my daughter had a debilitating attack (thought to be ADEM at the time). Thankfully, recovered, but more stuff since :(
    I discovered this article by Dan Shapiro back then:
    His words may seem a bit harsh, but I found the author's assertion that periods of crisis are often followed by periods of calm to be comforting. Stuff (sometimes rotten stuff) happens to all of us that we have no control over-- we can only control how we choose to deal with it. Your post touched on many similar sentiments. Your friend Mitch ( ) wrote an interesting recent post on "Black Swans" that also touched on the randomness of events that we are faced with in our lives. Thanks for yet another insightful post-- enjoyed the read.

  8. ...sorry if my links didn't work on my post-- not so much the techie person here...:)

  9. A priest one time told me why it was me....He said to picture a thousand people standing in a room. A guy standing on a tower above throws a random dart into the crowd. It hits me in the side of the head. That is why and the only real reason why. Trying to figure it out any other way will drive you nuts. Not very profound, but very true...

  10. Great post Marc. Reminds me on one of my personal favorite sayings. Whenever someone says, "Everything happens for a reason," I like to respond with, "No, nothing happens for a reason. Shit just happens. Deal with it."

    I get lots of funny looks when I say that.

  11. Both a "why me?" and a "why not me?" imply the existence of a "me," which generates the followup "who is me?" I suggest that we are no closer to answering that question than the first two. Which might suggest that in a logic-challenged world, your hairdresser's ruminations might make as much sense as any other explanations. Thanks for making me think. It reminds me that I still can. Or can I?

  12. cool dude

    I need to read it again and again

  13. "We can seek to tease apart the intricacies of the universe..." Great word choice. You are a very accomplished writer. (sorry--this has nothing to do with the theme of your essay, but I wanted to say "bravo" to the essence of who you are regardless of the illness that befell you.)

  14. Jen-I have trouble imagining myself a poodle, but as a freshly bathed Labrador Retriever, certainly...

    Barry-don't know that I was contemplating a personal responsibility in manifesting my MS, but that is an interesting take on things. "What now?" is definitely the healthy way to deal with the situation, far better than "what happened?", Or "what's next?".

    ms- love the Zen bumper cars image. Thanks for the kind words about my blog, and I hope you reach the "whatever" level sometime soon.

    Anonymous-seeing the humor in it is vital. We are all but players in a great big theater of the absurd.

    Marie-you're a very silly lady, you've nothing to be jealous of. You are a talented writer in your own right, and never cease to make me laugh with your uniquely skewed take on things. Everybody reading this should check out Marie's blog at

    Jim-thanks for your words of wisdom. People are indeed worth the risk, and you're absolutely right, I'd much rather I suffer MS then any of my loved ones...

    Prairie-thanks for the link to the terrific article. The fact that it's written by a psychologist who can't say the obvious truths he writes about to his patients also says a lot about the state of our culture and our humanity. We seem to be a society that can't stand to hear difficult truths, thus the social-political-financial mess we now find ourselves in. Nobody wants to be a grown up anymore, our culture has so idolized youth that the appreciation of wisdom and experience has largely gone the way of the dodo. Shame.

    Greek-thanks for that, most truths turn out not to be all that profound.

    Enjoying-I'm with you, I've always hated the expression "everything happens for a reason". Of course, nobody can tell you the reason, but they are sure that there is one. Much more comfortable to think that there are reasons, then to see yourself adrift in a sea of absolute randomness. As I said in my post, who knows, there may be reasons, but they might only be fully understood in the eighth, ninth, or 10th dimension, so we have no chance of perceiving them...

    Judy-I'm fully prepared to accept my hairdresser's reasoning. Makes as much sense as anything else I can come up with, and besides, it's fun to feed the birds...

    debe-thanks, the meaning of the post is probably much more clear in some parallel universe, but since we're stuck in this one, that's the best I can do...

    anonymous-thank you very much. Your "bravo" is very nice to hear...

  15. you're an inspiration. I was always very wary when i read other people's inspirationstatements but... you are, and you write beautifully, thanks for proving that we can do more than blindly rage

  16. thanks, Marc. The night before Jeff was diagnosed, when all we knew was it was bad; the doctor had viewed the MRI and needed to speak to us in person the next morning, Jeff had a similar revelation. "I never asked G-d why me when all the good stuff was happening-- when I met you, we had our son, I had career successes. It's not really fair to ask why me now." His bravery then, and yours today--confronting the unknowable--inspires me. J

  17. Wow...lots of comments...
    Intellectually, I always say, "Why not me?" But let me tell you, when you're in a crisis situation, say someone is trying to rape you, the first thing out of my mouth was, "God, why me?" I was later ashamed that I'd yelled that...but it is the essence of our existential being...
    Having said that, I remember watching Sesame Street when Mr. Hooper died...Big Bird went around to all of his friends asking why Mr. Hooper died...
    Finally one of the people (humans) said, "Big Bird, Because..." Then Big Bird understood.
    That is why...because. We are all human beings, imperfect at best. Some of us get through life without many scars of our imperfections; some of us have debilitating disease. Because...says it all...

  18. I must come back to this again, with
    less boyfriend-break-up on my mind. That fits so neatly into your overall picture that I can't keep my mind on the WORTHY POINTS that you seem to be giving me.

    I had about 25 yrs of advance warning about the MS (bad ON), but really no "solid" clues in the 16 years of being thought of as "like his wife by everyone, really, we mean it." When I felt separated, he said no, hon, don't worry

    And now I can't even keep my mind on your words,
    just sit here sniffling and thinking, "no, go back, that sounds right? Now what did he just say?"


  19. fantastic range of comments, but I somehow agree with 'Thai Women' and perpetual Law of Karma !

  20. Yes, but in some ways karma projects blame...I do believe in the law of cause and effect. I also once had a discussion with a physiatrist who dxd me with fibro way back in the 80s...he was discussing MS, and how he felt two forces were at battle inside the body.
    Fast forward to now...on a show, a well-respected doc was discussing MS...and said the body was in a kind of civil war...both sound plausible...but this doesn't really help us deal with the various symptoms. But when we're wondering why the disease is manifesting in our bodies, it's best to consider that we don't know it all...and I believe it's best to look at it all and say "What can I do now?" rather than "What can't I do now?"

  21. the Law of Cause & Effects is Law of Karma only, see we are sowing what we have reaped earlier, this Why Me & Why not me is only a sugarcoating on 'bitter' pill. see on human ground we all MSer have taken bites Physically or emotionally for a long-long time !

  22. my diagnosis was a confirmation of something I'd known my whole life too. I am glad I am not the only one with such an innate sense... as for the why-me and why-not-me issue, well it's always about me and not only me... I was an Always Asking Why little girl and still want to get to the bottom of the truth. I really hope doctors will get to the cause before I leave this world :)

  23. Your right. Why not menindeed.


    these may help your own research. i was diagnosed with MS a month ago. i dont think i can count how many times ive typed the word cure into he internet. In fact you may have already found these.

  25. Marc,
    If it hadn't been for my son who was diagnosed with Autism, I wouldn't have discovered that gluten was at the basis of my own MS relapses. I found myself saying, "Why us?" when he was diagnosed, only to say, "Thank God!" when we discovered the gluten was part (but not all) of the problem. Sometimes, that which appears as a curse is truly a blessing with a very different exterior.

    You are an excellent example of what Dr. Viktor Frankl means when he said our only TRUE freedom is the freedom to choose our attitude. It is the ONLY thing that cannot be taken from us. If we let our attitude be something other than what we would prefer, it is because we have given that freedom away.

    You have chosen well, and I am delighted to have stumbled on your blog. Thank you for sharing your unique viewpoint. Artistic, delightful and positive...everything a humanistic existential psychologist-in-the-making with Multiple Sclerosis could wish to find! I plan to share the wealth!

  26. I'm feeling the 'why me?' blues today. It's why I clicked on & read this post. I was so hoping you'd have some wondrous reason that would make me stop feeling like picking up a gun & blowing my brains out (not that I own a gun, so no drama there!). Still, I'm happy about your good haircut. I like a good haircut. I think I'll go get a haircut & a coloured stripe through my hair, maybe blue. Does blue go with red? Will I look like a flag?

    Have a moderately okay day fellow-sufferer-in-MS-hell.

  27. I don't believe I've ever asked "why me?" But I have wondered, if there are such things as past lives, who was I? Josef Mengle's understudy?

    1. If you were his understudy, I must've been Josef Mengele. Gack, what a horrible thought…

  28. Just discovered this blog and noticed that all the posts (that I've found) seem to be from 2010ish, so, very happy to see a response from Marc here in June. In a nutshell: I was literally thinking about "my" MS, past lives (hmmmm?), the multiverse, and winning the lottery, just yesterday (though some of these things are frequently in my thoughts, ha) the synchronicity of finding this blog and this particular post kinda blew me away. I'm new to the world of blogging and could perhaps use pointers to find more recent posts, if there are any? I see the list of posts to my left, but a quick perusal didn't turn up any recent ones. I was wondering if you (Marc) have gotten any better since 2010ish, or found any new treatments that have helped you.

    Thank you for so openly sharing your thoughts and experiences. You have already helped me.

  29. Oddly enough, I happened upon this blog after, within the last 24 hours, thinking about: "My" MS; past lives (hmmm?); zen; multiverse(s); and, last but not least, winning the lottery. Admittedly I think about some of those things pretty often, but the synchronicity of the whole thing was enough to motivate me to leave a comment here. THANK YOU. Also, I see most of the blog post dates are from 2010ish. I am new to blogging (or, in this case, following a blog), so I may need a tutorial, but I am very happy to see from your comment above (Marc) that you are still with us and still responding to comments. Was wondering if you have had any improvements/success from new therapies since the 2010s... I wish you well.