On Waiting and Honesty

Having been dealing with this disease called ALS for over a year now, there is one thing that you might think that I would have developed, and that would be patience and dealing with the waiting.  Apparently not.  I just don't understand why it would take from January of last year to January of this year to gain a diagnosis.  I realize that it takes time to setup appointments with the right people and schedule tests but all that does is add more stress to the patient.  I think that has been the worse part about all of this.  Not knowing definitely what is going on.

Now that I do know, there is a whole new set of questions to find the answers to.  How fast am I progressing; what can I expect to happen physically; what treatments to try and what treatments to reject; what meds need to be started and which ones to discontinue; how much time?  The last, we are assured by philosophers and religious writers, is not for us to know.

I am not so concerned with when my life will end, for surely all life must end in the appointed time, but rather with how much time I have to make good memories.  Memories to last life times to come for my descendants and loved ones.  Good memories of laughter, fun, and silliness.  Stories passed from one generation to the next.  Of going to the woods or the lakes and streams.  Of cooking in the kitchen.  Of sitting and watching a movie with a sleeping, snuggling child in my lap.  Of living!  Of loving!  These more than anything else will be my legacy.  For surely I am not a rich man.  What I have may not be worth that much monetarily, but will be, hopefully,  priceless to the one who possesses it.

One other thing that I have found is a certain liberty to be honest.  After all who wants to argue with a dying man?  Alright, I know, that was not right.  Seriously though, I have found that I no longer care about putting up a front to those that I have disliked but because of circumstances have had to pretend to get along with.  I no longer need to hide my feelings towards people.  I can express gratitude for the smallest of things without the expectation of something in return.  I no longer have to hold back on opinions and attitudes.  I can freely tell my Angel of 35 years, that I love her 2011 times a day without feeling cheesy in doing so.  I can tell my friends my deepest feelings.  And I can share, with perfect strangers, what I am going through and how it is affecting me and my extended family.

I wish for all that freedom.

Until next time................