Please forgive this self indulgence of reflection on how ALS has negatively impacted my life because I know some think of me as a source of inspiration and optimism which I generally view my life with a optimistic lens but not today as I sit here chained to my Lazyboy by a body which long ago abandoned me. Tomorrow I know I will be my old self again but this Memorial weekend has me in a reflective mood about what I am missing and the people in my life who have been absent from it or left this world way too soon.
Why is there this disease which robs one so completely of physical abilities and any dignity? Why was I cursed into this hell of dependence? I was not supposed to be this way! I loved being independent, finding a different road just to see where it lead and what adventure may await. I wanted to live a life where I contributed to helping others have a better life, finding a way to lessen their burdens not be the one who needed a helping hand, who creates a burden for someone else to carry.
I am supposed to be the ultimate family man but this damned disease has even robbed me of this destiny. I desire to be the husband that comes in the house with a rose in my hand and mischief in my eyes and desire in my heart, to grab my wife from behind and brush her hair out of the way so I can get a little sugar. I just want to show her the love I feel so deeply in my heart and soul but this life sucking disease does not let me even hold her hand. I am supposed to be the dad that carries my girls on my shoulders, comforts them when they are sick or hurt, teach them the things my dad taught me, coach their teams, cheer their victories and be there to support them in defeat and most of all be their protector but instead this cruel disease has them helping me. Why has this happened to me when so many others piss away their lives in pursuit of things or achievements that have no substance and have hollow rewards?
I want to be the friend that gives not takes, the guy you can turn to and depend on when your down to give you a hand up and dust you off, to occasionally cut loose with, go to a game or fishing and even just hang out, shooting the shit and telling tales out of school. I definitely don’t want to be pitied or be the one who makes people think or say “Thank God I am not him!” and even though I appreciate deeply and understand my purpose in life may be to inspire others by overcoming the physical disability with a positive outlook I would rather inspire by my deeds.
Lord if it’s in my life’s plan to become whole again I do not seek fame and fortune because those are fleeting and I don’t even desire the satisfaction of self achievement because I see what’s truly important in this life. All I would dedicate my life to is making those who are in my life or even cross my path feel happy and most all loved; give help and not be helped; give and not receive because I have received my quota of help for this life! I know it is hard for many to understand for those who have not lost abilities but learn from me it is not the things or money or even self achievement you miss when your stripped bare by something like ALS, it’s the moments in time you share with others and giving of yourself that you miss. Everything else is meaningless! Be well and happy!