One year ago, a good friend passed away from ALS. This is a poem written and read by Bob Stephenson at the funeral, to give you an idea of what it's like to live with that horrible disease:
I’ve never been accused of being short on words
No one will charge me today.
Indulge me if you will for a moment.
If seated, wedge you’re hands beneath outer thighs, palms up.
Standing, hands in pockets and make a fist.
Close your eyes and imagine:
Feet nailed to floor like Messiah to cross.
arms bound by sides in slip knot straight jacket
two ton pressured heavy chest as the rope tightens
is a constant itch
a rolling twitch
as you beg for relief and forgiveness.
Accordion straw flagged water bottle taunts your thirst
the mere thought makes bladder burst
and you curse your maker for the life direction.
is a wrestling match
to avoid the 300 thread count strangle hold
a battle for the regularity
the world takes for granted
It’s been a year
since you enjoyed the solitude
of standing beneath hot shower
flushed and washed your hands
pulled on tube socks
buttoned a work shirt
buckled a belt
turned on a light
or opened a door for your neighbor.
You hold dear
the last time you drove car
buckled your kids safety belt
stood in line at a concession stand
and composed bucket lists
you can’t remember the last time
you licked garlic drenched lemon butter
from your finger tips
felt the gentle curved back
of a fork between thumb and index
tasted the metallic bullet
in aluminum beer can to lips
or scrubbed the black ink
from Sunday paper palms.
you miss that early morning stretch
from scissor arms above head
through lung filled chest
over extended calves to tipped toes
and the exhale moans deep
into vapors of morning coffee.
You long for sidewalk tricycle races
water wings and painted Halloween faces,
refrigerator art and butterfly pin wheels,
Electric trains and crashing Hot Wheels
Baseball cards instead of Pokemon Cards
Coin collections and assembly required directions
Your world is soothed
in a Daughter loving embrace
turned upside down
as you ache for son’s untied shoe lace
and the truth that pictures
don’t replace a thousand words.
tears run marathons from cheek to chin
salt trail trenches dig in
through belief and perseverance
but you search for divinity in death
as you count every breath
and lungs auto pilot is shattered
SO walk with your maker
take meek solace
from the hands of faith
place your dreams
in the arms of hope
from the chalice of charity
in the pyre of courage
place blind trust
on the scales of justice
bleed your soul
in the well of temperance
in the light of wisdom
with the peace that God ….
has made a place for you.