Thursday, November 7, 2013

My Own Penske File


Google “multiple sclerosis” and you are provided almost 41 millions results in .22 seconds.  Further refine your search to “multiple sclerosis symptoms” and you’ll now have about 24 million links to browse – at your leisure  - in a slightly longer response time of .23 seconds.

I’d wager that most of these results include four common themes:
ü  It’s an auto-immune disease.

ü  Over 2.3 million people worldwide are afflicted by multiple sclerosis.

ü  The medical community is generally stumped as to how or why over 2 million people woke up one day and learned they had MS.

ü   A rather extensive list of ailments that are associated with MS, ranging from fatigue to paralysis.

It’s within that list of symptoms that I find one of the many reasons for writing…for telling my story. 

THIS IS LIFE.  THIS IS LIFE ON MS.

I believe that what’s lost in these medical explanations is the human side of this disease.  You can click on these millions of results but at some point, you’d become desensitized to life with MS.  How many different ways can you explain numbness, tingling, pain or impaired vision?  But no Wikipedia entry or medical journal can do justice to explaining what it’s like living each day with MS.

What you won't find in those google results -- 
  • My freezer has an even ratio of ice packs to frozen vegetables.
  • Shall it ever be required; I own enough pairs of socks to outfit an entire NFL roster.
  • Often, unsure if the latest ailment is a new MS symptom or not, the Wentink home can resemble a lab, with me playing the role of mad scientist (sans the white jacket).
  • My fear of heights has been matched by a fear of finding myself in a situation/conversation that requires standing.  Yes, I really do mean that. 
  • “Can you wake Daddy up to let him know dinner is ready?” echoes through our walls a lot more than I’d like.
  • If I have an untimely response to one of my wife’s texts, she’s worried I fell down the stairs.  Again.  
  • A needle goes into my body.  Every day. 
  • Lights are constantly turned off not to save on power bills but to alleviate the discomfort it causes my eyes.

“STRATEGERY”

In corporate speak, I’d classify the above as “tactical” challenges…but for me, the larger “strategic” issue that weighs on me is the reality that someday in the near future I will disclose my illness to my six year old son. 

In my dream world, this conversation would never happen.  Instead, on my tombstone, it would read “Here lies Michael Wentink.  Wait, he had MS?”…but I have to balance this fantasy with the ever evolving and oh so observant mind of my son.

No, I don’t have the pressure of a big presentation nor do I have to work all weekend on the Penske file but I’d welcome back those worries over wondering if my son will still view me in the same rock star, super hero status that he currently does, after learning about my MS.  Maybe I can Google the answer to that?

George, "working" hard on the Penske file...

 

1 comment:

  1. You are a superhero, and that won't change for your children until they reach that stage of growing up when all parents lose their superhero status ...and then you will regain it again.

    Nancy A

    ReplyDelete


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