Sunday, January 2, 2011

I'm Gonna Live My Life Out Loud!

Shortly after Christmas, people started saying, "Happy New Year".  In the past, New Year's Eve was never a big deal for me.  Sure, I would sometimes watch the Dick Clark special and maybe make a few resolutions, but that was about it.  Last week, I winched every time I heard it. 

A couple of weeks ago, I watched a video about Alzheimer's. It featured a discussion segment that was hosted by actor David Hyde Pierce.  In the video, one man in his early 50's, was diagnosed with Early Onset Alzheimer's.  What made this man's situation noteworthy was that his mother and two of his sister's were also stricken with Early Onset Alzheimer's.  After informing his family of his diagnosis, he stated  that he may not recognize them by next year.  That stuck in my head.  Will this be my last New Year's Eve?

I understand that people with Early Onset Alzheimer's can "live" a long time.  However, I have a problem with the term "live".  So, from this point on, I am going to refer to living or my life as the time that I have where I still have memories of family and friends and can still do things that I enjoy.  In my opinion, once I am no longer able to recognize people or remember events or complete simple tasks, that is when I will die.  After that, my wife Scherry and family, will have to deal with Zippy (the name Scherry gave to what will left of my  body or my what I call my "shell").

I had to work on New Year's Eve, and was really dreading it as I would have to hear "Happy New Years" hundreds of times that day.  As the day progressed, I began thinking that "this is bullshit!"  I'm not going to spend my last days overwhelmed and preoccupied with my quickly passing life.  I borrowed a line from the Rob Thomas song, "Someday" and decided that "I WAS GOING TO LIVE MY LIFE OUT LOUD!"   I am going to try to squeeze as much fun, adventure and purpose out of every spare lucid moment that I have left.  On a break, I went out and got a New Year's hat and some colorful beaded neck chains and wore them the rest of the evening.  I told EVERYONE that I saw to have a Happy New Year!   The hell with all of the negativity, I want to enjoy what time I have left!

Although it wasn't exciting, today we went shopping and then I spent some time cleaning off a pile of papers off of my computer table  and started to get rid of things now, so that no one else would have to.  I have to admit that I am a hell of a pack rat and have been saving clippings of newspaper articles that I found interesting and just saved just about everything else that I thought might be useful in the future.  The hoarding is going to stop.  My eldest brother died last year and he was a pack rat, too.  His apartment was so bad that he had little paths around the piles of boxes (Scherry pointed out that it must be a hereditary thing.) and other junk that he had saved.  He just had a little spot cleared out for himself in front of the television.  My family came and helped out a little, but it was my other brother, the middle brother (as I am the youngest of all of my siblings) who had to deal with all of the junk.

Later, I got on the computer and set up a Skype account for Scherry and myself.  I wrote an e-mail to my step daughter which I don't think that I have ever done before, telling her about her Mom's new Skype account and am attempting to start a dialogue with her.  She and other members of Scherry's family were really supportive and volunteered to help with taking care of me when Scherry broke the news to them about my Alzheimer's.

 After checking <Congress.Org> (a marvelous site), I sent an e-mail about the Stem Cell Research Advancement Act, stating that we must fund the use Stem Cells to aid in the research for Alzheimer's, Parkinson's and all of the other diseases that would benefit from such research to my Senator's (S. 3766) and Congressman  (H.R. 4808).  I came up with a slogan, too!  "Support Government Funding for Stem Cell Research, the life you save may be your own!"

I am already thinking about what I am going to put on my BUCKET LIST, the list of things to do before you kick the bucket.   Fasten your seat belts everybody, because we are in for one hell of a ride! 


  1. Very positive posting. Could have some weighing on thoughts that are my own.

    Good job Tom!

  2. The last line should read:

    Fasten your seat belts everybody, because we are in for one hell of a ride.