Tuesday, November 2, 2010

The dirty, nasty, sinister side of Kennedy’s Disease

Yesterday I received the following comment from Mike. 

“Thanks for your inspiration Bruce. I have 'enjoyed' an 'arrested' degeneration for the last couple of years and unfortunately got my hopes up that I wasn't going to get any worse. Unfortunately, I have begun to get worse again. While the last few years I was able to get around pretty well with just a cane (a few hundreds yards between rests) I'm now finding it difficult to go 50 feet. I've also had to finally put a seat in my shower and use my power chair more than before. Just when I started to really feel sorry for myself, I found your blog and your writing has given me a renewed sense of 'worth' that is so helpful in coping with KD. Thank you and keep up the great work.”


As soon as I read Mike’s comment, I knew that my next blog topic would address the dirty, nasty, sinister side of Kennedy’s Disease. That is, by the time you get comfortable with your current state of progression, you are once again challenged.  This is also a reason I regularly write about my ongoing battle with “acceptance.”

In the upper right column of this page is a brief explanation of where I am in my journey.  "Life is a succession of lessons which must be lived to be understood."  … Each step (challenge) is a life-experience and I must come to terms with that experience (regain my balance … accept my new current condition) before being able to take the next step (move on with my life). It is a slow and often challenging journey, but I am finding it very fulfilling.  "Acceptance" is what I am working on today. For without it, I will never be able to take the next step. 

At times, it almost seems like Kennedy’s Disease is a sentient being that loves to play tricks on me.  Unfortunately, it is all tricks and there are no treats.  Let me explain what I mean. 

I wonder how many times over the years I have said to myself , “Okay, I can live with this”?  Yes, ACCEPTANCE … whew, I finally made it.  Then, “WHAM!” it pulls the rug out from beneath my feet and gives me another new challenge to contend with.  It almost seems like this entity (Kennedy’s Disease) is lurking in the background, watching and waiting for me to finally come to terms with my latest and greatest loss of capabilities before launching itself at me once again.

Unfortunately, there is nothing I can do about it.  I have to pick myself up, dust myself off, and begin working on “acceptance” all over again. 
  • Frustrating … you bet! 
  • Discouraging … yes! 
  • Inevitable … without a doubt, yes! 
This ongoing battle is just another part of the process of “learning to live with Kennedy’s Disease.” 

So, my journey continues …

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