Thursday, July 6, 2017

4th of July Peeworks

4th of July
heading to Curly’s
everything went sour
just before we were about to leave

my catheter bag got run over
by my power chair
leaking a big
puddle of pee
onto the rug
under the kitchen table

so Jackie, Micah and Howie
had to move the kitchen table
throw out the carpet pad
take the rug outside
change the catheter bag
sweep and wash the floor

then the van wouldn’t start
we had to jump it
but we were determined
to get to Curly’s

finally we arrived at Curly’s
Curly had rented a ramp
so I could get inside his house
he cleared a section of his living room
so I could go upside down
in my power chair

I was lying there
enjoying Laura rubbing my feet
talking to Stephanie

Curly took me down
drove me to the front door
to watch the kids
light up fireworks

I had bladder spasms
peed all over myself
needed to call for Jackie
who was having a good time
talking to her girlfriends

we had to go
to Curly’s bedroom
where he had made a bathroom station
especially for me

after putting on a dry sarong
cleaning up
it was time for a walk
around the block
to the music

I thought Jackie and I
were going alone
but Laura and Stephanie joined
the girl chatter didn’t stop
nor did my bladder spasms
especially when we ran into friends
I didn’t pee, but the spasms were painful

Jackie ranted,
we post happiness
but our life is ridiculously hard
a total shit show
never enough help
we make ALS look like  fun
but it truly sucks the big one

when we got to the music
they were announcing raffle winners
there were thousands of people
milling about
it was crazy crowded

we still lingered
outside the store
visited with a  partying employee
then a long time customer
who I hadn’t seen yet
she gushed about Soul Shine
especially my Soul Shine speech
I thanked her for her kindness
using my eye gaze computer

the music still not starting
we continued rolling
around the block

we got back to Curly’s
I was having more bladder spasms
penis pain
so back to Curly’s bedroom
while I sat on the commode
the community fireworks began

we rolled onto the back porch
joining our good friends
for the spectacular light show
two green drones following
the action



  1. You are so strong. Your family is so strong. Thinking of you and sending my love and prayers.

  2. Mark, you and Jackie do a remarkable job of making the best of your situation and still managing to laugh and enjoy life to the fullest. We love you, spasming bladder and all!

  3. Mark! Sending my love and a warm

  4. It is so beautiful, looks like a glimpse of Heaven. I hope to see it when I can make it to Big Sky which I hope will be soon. So sad we couldn't make it to Soul Shine... Sending you love every day!!!

  5. Wow, you are such a strong man Mark, brings tears to my eyes because of how determined you are to not let this spoil your time with your family and friends. Keep on crushing it Mark!

  6. Very informative and unique tips dear. Thanks for sharing.

    how to clean a hydration bladder?