Monday, March 30, 2015

I guess I am just doing too well!

I was sitting in the bathroom, thinking, and it came to me;  I am handling Lewy Body Dementia way too well and people don't believe that I am ill because of my "Hacker" personality!  It is true.  I do not complain openly.  Yes, I bring my issues to this forum.  But, when someone asks how I am doing, I always say; "Outstanding".  I always have a joke or a funny story to tell anyone who will listen.   I am bright and engaged, or at least I try to look that way.

And what does all this get me?  Condemnation!  People deny I am ill, call me a liar, indirectly, and do not see my issues.   Truthfully, I get very aggravated about this treatment.

Since I joined the Navy, I have always been a "Hacker".  Truthfully, I became a hacker even when I late in my youth because of my family circumstances.  But, the Navy showed me that "Hackers" advanced, were liked, and were depended on.  And since, early in "Boot Camp" I decided I FIT in the Navy, I wanted to be what the Navy wanted me to be!!

That carried over to my Civil Service career and into this disease.  and because of that, I get short changed in the treatment I get from others.  Even family members.   And while I do not want people doting all over me, I would like some recognition of the effort I put into dealing with LBD.

Am I an invalid?  Not yet.  But I am handicapped in may ways.  But, that fact goes fundamentally unrecognized.  And I feel shortchanged over that.  I suppose I am just whining.

Recently, I have let down my guard, so to speak, since fighting LBD has become more than I can continue.  But still, I get little recognition.    Maybe, they just don't care.  Or, maybe, as I have written before, they do not understand.  Whatever the case, I am on the short, very stinky, end of the stick.

Note:  I can hear you say:  Boy, that a wuss!  He is really trying to get sympathy.  or something along those lines.  And, I understand your point.  

But, look at mine.  I live in a retirement community with may folks dealing with health issues.   Yet, when my disease comes up i get: No, there's nothing wrong with you.  That's not a real disease.  I never heard of that.  The doctors must be wrong!  And other condescending replies!!  This happens all the time!! I have received these comments of unbelief at best and "Your a Liar" at worst, from acquaintances  and family too.  Now, my friends, those of you who have stood beside me, through think and thin.  You have always been there for me.  So, don't think I lump you in this group.  But, in my new State, I meet many more doubters than acceptors.  My pastor here, actually asked me often, how I am dealing with LBD.  I appreciate that.  But, he is THE ONLY PERSON who ever asks that question here in Florida.  Yes, I get calls and emails from you, my friends, like Jerry, Steve, CJ, Cathy, Jim, Don, Big Head, and others.  But, with the exception of my Foster Sister, not one relative has ever asked how I was doing.  So, you can see my point.

I guess I am feeling sorry for myself.  But, I believe I have a right too.


  1. Brilliant post - it is true that we folk who soldier on bravely with a sense of humor are sometimes not seen to be suffering enough to bebe authentic.

  2. I have noticed this same omission of asking how are you. Two of our children never ask, his realitives barely acknowledge his illness. I believe it's his reaction, he wants them to know he is ill but also is easily angered if they treat him as if he is handicapped. Mental illness, seems to be an area where the patient and others don't know how to handle it. I wish I knew the answer.