Letter to ALS (MND)
As I sit here and ponder the future and
what it has in store for me, I can't seem to quit thinking and
asking how I got here. So many questions with so little answers.
Why is everyone's progression so different? Why one day I can
eat and other days I can't? Why do you steal my voice but not
my thoughts? Sometimes I think not remembering the daily hell
would be better. The not being able to talk without someone
saying "what?" Or better yet not even being able to scratch
ANYTHING because you have paralyzed my fingers, hands, arms,
legs, feet, and toes. I mean did you intend on me being 100%
dependent on someone to feed me, bath me, groom me, dress me,
transport me, oh and god forbid go to the bathroom? You
couldn't of left me 1 of those? REALLY? Why so cruel? On top of
that you haven't given us inclination of any type of cure or
relief? 5,000 people a day are diagnosed each year with MS and
ALS. There are 600,000 people living with MS and only 30,000
people are living with ALS. The difference: 7 treatments are
available for MS and only 1 for ALS. And the 1 doesn't even work
on the majority of people diagnosed.
But wait I need to retrace and go back to
the things you haven't stolen. Like my mind, my heart, and my
spirit. Maybe remembering the daily hell helps me, helps me
concentrate more, love more, and hope more. HOPE, wow that is a
powerful word. What's wrong ALS? Does that word scare you? Does
it weaken you? I think it does. I believe that your foundation
shakes and quivers as the hope courses through my veins.
My competitive juices are raging. C'mon,
bring it! Is that all you got? C'MON DAMN IT. THIS IS MY HOUSE.
NO ONE AND I MEAN NO ONE COMES IN MY HOUSE AND PUSHES ME AROUND.
I have HOPE in my corner and he is the best in the business. So
ALS back off!!! As long as I can take a breath, I will have
HOPE. “Dum spiro, spero (Latin), "While I breath, I hope"”
ALS Survivor and Warrior
P.S. All of my friends and family have HOPE
Dear friends, I am not able to use a
keyboard. In order to type I use an on-screen keyboard. You move
the mouse and click on one character at a time. Took me 3 hours
to do this. May is ALS awareness month so please re-post this
for me. Thank you, Tim Bargar