What do I mean about fight?
I fight every day against my body, against my mind. Against the difficulties those bring me in participating in my life and my families life. Difficulties in caring for myself or even making food, communicating my thoughts or needs… I must fight hard to at least try to get through some of the small daily tasks that as healthy people we take for granted.
I fight against emotions, fear, terror, intense pain not of this earth and frustration – while still keeping a pleasant, gentle, silly demeanor …
I fight for my son, to be a part of his life. I fight back to be able to create at least a few lasting memories of time with his father not overshadowed by the complete devastation this drug caused. I fight back hard in order to live whatever life I have left in such a way that my son never forgets how much he’s loved. I fight back to show him how to never, ever give up.
It is a moment to moment, every day fight to keep my will strong despite being unable to afford medical care and co-pays, treatments, proper diet, utilities, rent, etc. I fight against the feelings of desperation when I cannot communicate sensibly to get help from Drs (I don’t know what to say) or anyone – I spend my day mostly silent as my thoughts are disorganized and I ramble, lose my thoughts. The world is too fast for me to process and I get lost and confused. When I do have words, I still get very tangential in a way that I cannot control and is problematic when trying to communicate my needs.
I fight hard to capitalize on the hour or so of variable but minimal functionality I’m given each day before my batteries drain too far – fight to use that time to be productive and to effect positive change in my life and for my family in any way I can.
I fight to get out of bed each morning, despite the pain and despite my/our reality so I can do it all again one more day.
I know loneliness, and I know what it’s like to hear my 16 month old son playing on the other side of the house while being completely unable to reach him. I know the heartbreak of hearing my son cry countless times after being told Daddy can’t go with – again… I know the look on my sons face when Daddy falls down, or when Daddy can’t get up. I know what it’s like to hide the pain out of fear that will be his last memory of Daddy, and I know the fear of thinking my little boy is going to find Daddy’s body…
I know the hopelessness, shame and humiliation of being kicked out of Neurological Intensive Care. I know how it feels to be mocked, even laughed at by arrogant Doctors. I know how it feels to be left for dead by the very medical system that did this to me.
I know what it’s like to be unable to communicate thoughts enough to get help, and I know desperation. Instead of breaking down and giving up, I’ve overcome a life-long fear of needles to get my medicine. I taught myself to administer my own IV’s and turned that into a learning experience for my son in courage and overcoming fear.
I know helplessness. I know shame and I know guilt. I know hopelessness. I know terror. I know fear and I know pain. I truly know the meaning of the word “can’t”. For those first 1,000 days and nights I stared death in the face, each time I gave it the finger – and got back up.
I also know what it’s like to truly live in a moment. I know determination. I know strength. I know tenacity and most importantly; I know the power of the Human Spirit.
I FIGHT. EVERY SECOND OF EVERY DAY. I fight for the smallest of moments. I am here to lend you my fight – so you too may steal back as many moments as you can.
I love you all.
Your Brother in Fight,
More of my fight can be found here: