Sunday, June 14, 2009

Pinball or Pincushion?

Throughout the course of my illness, I've pretty much been able to avoid falling into the "why me?" trap by rephrasing that question, "why not me?” I've experienced a few one in a million positive events in my life (winning a pick five lottery and getting a hole-in-one in golf, to name two), so ringing one up on the negative side of the ledger really doesn't surprise me. Getting MS is a doozy of a negative, and sucks in every way that something can suck, but I've thoroughly read my lease on life and it unfortunately doesn't include an exemption on getting suck ass diseases. I don't often succumb to self-pity, as I realize that triumph and disaster are two sides of the same coin, and both are total impostors.

Rather than "why me?” the question that does haunt me is "how me?” I'd really like to know just how I managed to pick up this particular affliction. Since the best neurologic minds in the business still haven't determined the underlying cause of MS, there is no good answer to this question. I'm certain that in order to get MS a genetic predisposition is required (my mom has Type I Diabetes), and recent research indicates that all MS patients are infected with the Epstein-Barr virus (as am I, as per blood test results).

So, I have two of the factors that science tells us lead to Multiple Sclerosis. Still, not everyone with a genetic predisposition and an Epstein-Barr infection gets MS, so there have to be other triggers involved. These triggers may be different for different patients, and what I want to know is just what other factors did I run into, and when did I run into them? Was there some way I could have possibly avoided them?

In effect, I want to know whether I am a Multiple Sclerosis pinball, coming to the disease through a random series of events that were absolutely beyond my control, like a pinball getting whacked around a pinball machine, or a Multiple Sclerosis pincushion, born to be afflicted, fated to get MS no matter the direction of my life?

On a philosophical level, this is a question of free will versus destiny. Of course, the answer to the question of how I got MS is really of no consequence, since I have the disease and the knowledge of how I got it will never change that. Still, I find myself sifting through the pieces of my past, trying to pinpoint when the first signs of my illness showed themselves, and if there was any discernible events or episodes that preceded them that may have set the disease process in motion.

This is a fools errand, to be sure, but the human mind strives to find patterns in randomness. We look at clouds and see animals, or faces, or an avocado with 6 feet and hairy armpits, and we likewise look back at our lives and try to make all the pieces fit. We make choices every day that can and do completely alter the courses of our lives, but ultimately, despite our choices, would the outcome be the same? Do the infinite meandering paths that my life might have taken all converge at a point called MS, or were there roads not taken that might have curved around it?

I do believe that we have certain lessons we are meant to learn in this life, some bits of wisdom that we must acquire. My experiences with MS have provided me with some important insights, many of which I've tried to express in this blog. Some of them are lessons that, upon looking back, I seem to have been actively rejecting back in my healthy days. If I'd been more receptive to them, would there have been no need for the universe to whack me upside the head with the MS stick? Perhaps it wasn't my physical actions that led me to MS land, but my obstinate and willful avoidance of life lessons that were being gently lobbed at me that resulted in the catastrophic obliteration of normalcy that MS has wrought. Did the universe resort to screaming bloody murder because I simply refused to listen to its whispers?

Then again, perhaps it all was completely beyond my control, my getting MS an event as random as the computer generated numbers on a lottery ticket. Pinball or pincushion? Either way, I'll not be dancing any time soon...


  1. I've read your words and I really believe I get what you're saying. There is however one more possibility.

    Perhaps you having MS has forever altered the experience of others. It is undeniably part of your journey now, but it has also affected the journeys of so many around you. You are a great teacher Marc. Thank you for sharing.

  2. All I know is MS really sucks the big one. I enjoy reading what others experience with this sucky disease.

  3. Hi Kamikaze,
    To cure RA requires that you brake out of the one dimensional thinking box of modern medicine; sounds like you are going there. Modern medicine’s approach to autoimmune disease; is like a mechanic trying to tune a car engine by going up the exhaust pipe. Modern medicine approaches the autoimmune disease problem by trying to stop the immune system from attacking the patient; they should look at what is driving the immune system to attack. Since that is obviously the root of the autoimmune problem, why is your immune attacking you, what have you done? You tell me that this is not strange; modern medicine cannot answer this basic question; why 140 different autoimmune diseases even exist? Answer this question; name one disease they have cured in 60 years? They certainly have been asking for your money and the governments to find the cure. Well what are they doing with those trillions of dollars? Modern medicine reminds me of the Wizard of Oz a lot of unintelligible noise, smoke, radiation and laser beams but behind that there are a lot of sick and suffering people. I hope this makes you think and upsets you, it does me. That is what America needs today a lot of informed and upset people.


    Ps Some why possibilities, medication, auto accident, stress, strenuous exercise, toxic buildup says latest research.

  4. i've had similar thoughts. like the way you put it.

  5. I have found through my journey with this disease, the "why me" or "how me" isn't nearly as important as the "Now What". I believe it is not until someone goes through some huge event in their life that the true representation of who that person is becomes apparent to the world around them. I have seen some of the most amazing people, and been part of their lives, as they battle the most unthinkable of diseases (Parkinson's, cancer, MS, to name a few). I believe they have always been extraordinary people hidden within the ordinary, until that is, they were met with a challenge that forced them to pull out the talents from deep within and show the world what they are really made of. I believe you too have done this, and I am so grateful for your outlook on life, the disease, and your beautiful photography. But without the monster within, I would have never had the opportunity to get to know all of these things about you.

  6. Weeble: thank you for your kind words. I know the road you've traveled has been rough, and you too have much to teach. What's the use of learning lessons, if you can't pass them on?

    Anonymous: you said it, MS sucks the big one. It is comforting to see that others are getting through this mess, and how they are doing it...

    Paul: you're preaching to the choir, brother. Modern medicine is good at a few things, but by and large much more is not known than is known. And I'm in total accordance with you about the way autoimmunity is treated, it's akin to treating a broken leg with painkillers. Yes, the leg might stop hurting temporarily, but it's still broken. I've been meaning to write some posts on this very subject...

    bayard: it would be hard not to have such thoughts, I suppose. Human nature, I guess...

    Anita: thank you for your thoughtful post. Some of the only real heroes I've ever met are folks who handle dealing with a chronic debilitating disease day in and day out with grace and humility. People can be quite extraordinary, under the worst of circumstances. I'm glad that you appreciate my little part of the Web, and I deeply appreciate your letting me know...

  7. I'm old enough to remember Polio vaccine- the family was given it in a suger cube in High School gym, after lining up with lots of others. I knew two polio Victims in chairs, time passes, both dead now, have never seen Polio or it's traces again in USA. I got chicken pox, my kids immunized 15 years ago and never have had. Stuff does happen, maybe not MS stuff, but stuff. When's the last time someone you knew had Malaria?

  8. My teeen daughter given Guardisil - "One less" you know.