Thursday, May 19, 2011

Expectations and Hopes

For many years I felt that something was terribly wrong with me, but I lived a life of denial believing that if I did not acknowledge it, perhaps it would go away.  Then fifteen years ago my neurologist ran a series of tests and concluded that I had Kennedy’s Disease (Spinal Bulbar Muscular Atrophy).  He recommended that I see a specialist at the University of Pennsylvania … a Dr. Kenneth (Kurt) Fischbeck … and the rest is history.

Fifteen years ago Dr. Fischbeck believed that we should have a treatment in five to ten years.  Unfortunately, research is not an exact science and predictions do not always happen as planned.  Yet, my hope never diminished. 


About a year or so ago reality came a calling.  My  expectations, hopes and prayers for an effective treatment had been tested many times.  Watching my strength wasting away as my muscles withered has taken a toll on me. 


Experience is a great teacher.   And, perhaps wisdom does come with age.  Whatever you want to call it, I realize that a treatment cannot reverse what has happened to my body.  So now I just hope and pray that I can maintain a certain 'quality of life’. 

I have said many times that ‘hope is what we live for’.  If it weren’t for hope and faith life would be much more difficult.  That does not mean that reality cannot enter into the equation and with it a new sense of realism. 


Some of my audience will read into this article more than what I am saying.  Please don’t!  This acknowledgement does not mean that I have given up or I am depressed.  It is nothing more than another form of ‘acceptance’. 

Furthermore, this new level of acceptance has allowed me to focus even more on the words …
“Working together to find a cure …
‘if not’ for our generation,
then for our children and our grandchildren.”

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