Thursday, October 7, 2010

A Journey of Self-Discovery

I saw a commercial the other day that really made me think.  It asked the question, “Does the journey create the person, or, the person create the journey.”

In my earlier life (pre-Kennedy’s Disease), I spent several years in search of answers … e.g., there has to be more than this.  Searching for the meaning of life can take you down some interesting paths.  I dabbled in Transcendental Meditation, Yoga, and even Existentialism.  I studied the different religions of the world.  The more I learned, the more questions I had.  In the end, I was still left unfulfilled.

My real journey began, however, with the progression of Kennedy’s Disease.  When I could no longer avoid or disclaim the possibility that I had the mutated gene, my journey changed dramatically.  At first I felt alone … and was not able to share my thoughts and fears with others.  I then went through the “why me” phase.  It was about then I realized I was no longer in control (was I ever really in control).

Like most everyone, my journey went through the denial, anger and bargaining phases next.  I progressed from there to trying experimental therapies.  In the end I realized that I was still trying to create my own journey and I was failing at it miserably. 

I am a typical ‘Type A” personality.  If something needs to be fixed, I fix it.  If I do not have the right tools to fix it, then I will find the right tools.  If I do not have the right skills, than I will find someone that does.  I eventually discovered (accepted) that there were no tools or skills out there that could fix this condition.  With that realization came acceptance.

Some place after “acceptance”, the journey took control and it is now creating the person (me).  I still do my darnedest to try to wrestle control away from my journey, but it seems to always win out.  But, by following this new path, the most interesting revelation has surfaced.  I believe I am beginning to understand more about me and about life in general.  By realizing that I do not have all the answers, the right answers seem to appear when I need them the most. 

Who knows who I would have ended up being if Kennedy’s Disease had not shown up when it did.  Would I have been happier, probably not.  Would I have been more fulfilled, not necessarily.  Learning to live with Kennedy’s Disease is a journey I would have never taken.  Yet, it is now my journey.  By embarking on this path, I have learned much about myself and even more about others. 

One of the key lessons learned has been that “people are there for you when you need them the most.”  I liken this to what the cornfield whispered to Kevin Costner in the movie ‘Field of Dreams’.  “If you build it they will come.”  Family, friends, or strangers, it really does not matter.  If you are willing (receptive), they will come (be there for you).

Wont face them alone
For those of you helping me along my journey, thank you for your patience and support.  You are making it possible for me to live with Kennedy’s Disease.


  1. Thank *you* Bruce, for keeping up this blog. Your experiences living with KD, and your honesty and willingness to share them with others, gives hope and encouragement to others living with KD and to the people who love them.

  2. Robbie, it is good to know we are not making this journey alone. Thanks for your support.


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