Wednesday, March 13, 2013

The MS App (Director's Cut)

Please note - this entry was originally published by the National MS Society Blog at http://blog.nationalmssociety.org/ - above is the "extended" version :-)

Oscar Wilde believed that life imitates art far more than art imitates life.  My own personal thoughts on this statement are muddled, at best.   Quite often, I find myself relating passing predicaments back to one of my favorite television shows, “Seinfeld”.  Taking too long to order your food?  No soup for you!  Playing a trivia game?  The Moops!  Feeling sluggish and tired during the summer?  It’s the summer of George!  Others may find similar ironic connections to their own favorite movie or book – mine are usually covered by terms like “Bizarro World”, “Festivus” and “Vandelay Industries”.
Although I see reflections of Seinfeldian art in my daily life, these comedic episodes were written and usually based on other individuals own true stories, creating a chicken vs. egg argument over which came first – life vs. art - and I  leave this philosophic debate to more fervent minds.  My focus…my wonder, is that maybe if life did imitate art, in this case, a video game from almost thirty years ago, then perhaps the confusing world of MS fatigue might be a little better understood.  

LIFE FORCE


Growing up in the 80s, family trips to the local shopping mall usually involved my brothers and I heading to the arcade and playing video games until our parents gave us the sign that it was time to go. For this ten year old, it was sweet music to my ears as the fresh quarters rattled around in the coin dispenser, the converted dollar bills courtesy of Mom and Dad.  My time and quarters were spent playing mostly sports-themed games, as not much else really piqued my interest.
After I spent my last quarter, I’d wander over to the game “Gauntlet,” not to play, but to watch for a few minutes until it was officially time to leave. “Gauntlet” was very different from “Tecmo Bowl” and the other sports games I usually gravitated toward; rather than trying to beat another team by scoring more points, it was about pure survival.

My eyes were always drawn to each player’s score, highlighted in big red numbers, usually rapidly descending as players struggled to complete the various levels. There was one memorable phrase I remember from the game: “Your life force is running out!” It was uttered by the computer narrator whenever a player’s health had decreased to a threatening level. As I watched, I’d try to predict in my head at what precise moment the computer would start providing this ominous and repetitive alert.

SO TIRED OF BEING TIRED


For those with MS, energy is a prized resource, available only in limited quantities. Read any medical definition of multiple sclerosis and “fatigue” will be listed as one of the more common symptoms. The quotes are an intentional and caustic nod to this word; personally, I find the term “fatigue” lacking in accuracy and descriptive affect on the realities of living with MS.
Webster’s defines fatigue as “weariness or exhaustion from labor, exertion or stress,” but with MS no exertion is required to enter a state of exhaustion; rather, weariness is constant - a baseline. Normal, daily routines, like showering and shaving, are obstacles to be planned for and managed, all in the name of preserving my energy. Even on my best days, I regularly feel the dark cloud of exhaustion hovering, tempting me to surrender and retreat to a dark and quiet spot, isolated from others.

One moment I’m reading a story to my children or enjoying a dinner with my wife … then suddenly, my energy has vanished, my bones feel cold and achy, my mind is hazy, unable to think clearly. Often, I worry that my children think I’m ignoring them, my friends and family feel I’m disinterested, or new acquaintances wonder why I seem so tired and unengaged.

MY OWN GAUNTLET


But what if I had my own colored indicator, floating above my head, clearly identifying my energy level? My “life force” would blink in big numbers, and a friendly alert would go off when a low level was reached, notifying me and others that my energy was tapped out or, as with most days, surviving on fumes. 
With respect to Seinfeld, this would be quite the Bizarro world and understandably, some might hesitate to broadcast their personal battle, a scarlet MS for all to see. But it would also be a portal for seeing through the MS looking glass, easing confusion and misunderstanding, highlighting our strength in battle and a wonderful way to educate ourselves and others on the moment-by-moment struggle we face against our own bodies.  Maybe it’s a show nobody would want to see, but they would all be based on true stories -- art in its purest form.
 
 
 

2 comments:

  1. In my late thirties, I had to leave my own Fortune 500 business career due to MS, something I certainly had not anticipated when I received my MBA in my mid twenties. I am now considerably older. The MS, of course, remains; the memories of the business life, grown foggy. It has been an ongoing process of reinvention, resulting in a me I again could barely have imagined years ago. Surprisingly, some of the experiences brought on by the life change occasioned by MS have been great. I discovered I loved writing poetry and fiction, Blogging turned into an amazing source of friendships, literary expression, and access to resources. While I was still able, being retired also granted me the time to do extensive travel. That is the retirement experience at its best. Unfortunately, the less salutary side has been the ongoing MS deterioration and the misnamed fatigue, which was the singular symptom that had led to my retirement. I look forward to reading your blog as you navigate your road less traveled.

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    Replies
    1. Hi Judy,

      Thank you for sharing. Such striking similarities we share, an unfortunate truth for many of us afflicted by this disease. But within those doors closed by MS...the chapters prematurely ended...are some wonderful pots of gold that would likely have never been discovered otherwise.

      I appreciate your kindness and do hope you come back and visit and follow my posts on the National MS Society blog.

      Mike

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