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     I try my best to keep a positive mindset every day.  But let’s face it, anger is always lurking.  There is no sense denying it.  I just have to acknowledge it, determine the causation and then decide what my course of action will be.  More often than not, it is beyond my control.  In that case , I am left to decide if it is worth my time and energy to even worry about. 

     There are many reasons to be upset when you are given a terminal diagnosis.  When it comes to ALS, it is a damn shame.  The symptoms of ALS were described as far back as the late 1800’s.  That means that in almost 150 years and with all of the advances in modern medicine , we are still without so much as an effective treatment. This is just sad.  It is maddening that people today have only a slightly better prognosis than they did over a century ago !  What really angers me, is that because this disease is considered “rare”, there is no urgency to develop a cure.  It doesn’t help that the vast majority of people in the world have no idea what it is, yet they were quick to dump ice water on their heads to post it on social media.  I have no problem admitting that I am just as guilty.  That is why I am so passionate about creating more awareness for ALS. 

     On a personal note, I deal with more disappointment than anger, probably.  I guess it is really both because doesn’t one kinda’ lead to the other?  It irks me that almost 4 years in, there are people who still just don’t fucking get it.  Of course this is geared more towards those who have a personal relationship with me or my family.  I am living on numbered days.  I am not getting better.  Someone once told me , if they don’t make an effort to be involved when you are still good , then don’t be upset and saying you wish you could have done more when I am bad or gone. I think it is great advice.  I know it sounds harsh, but you know what?  It is the reality of what I am facing and how I feel.  

     It angers me to be made so helpless by this shitty disease and I still have more to endure.  To see my wife, my caregiver, struggling to provide the attention that I require.  Yet, no one stops to see how she is doing.  I mean really and truly acknowledge the sacrifice she is making and offer her a moment of attention.  Everyone just assumes that because we have a system that she is “good”.  I hate that my children have to see me become a shell of who I once was.   

     As I engage my ALS community, I am saddened by the stories I hear.  The struggles of families trying to make sense of an uncertain future.  Trying to navigate a health care and social system that is not equipped to handle this disease.  Choosing to die because it is too expensive to live.  Battling an American health system and insurance system that largely values the bottom line over compassion.  The lack of support by the community at large, which circles back to the lack of awareness.  Ask me how many of my “friends” supported my ALS Walk fundraiser this past year.  Remember how I have mentioned getting the obligatory “if you ever need anything “?  Yeah… crickets.  

     I hate to fill my blog with gripes and complaints.  I would much rather spread knowledge and hope.  But life with ALS is filled with highs and lows.  Sometimes you have to air things out and not let the darkness fester.