Monday, July 24, 2017

Adult Swim

There are people I keep close to my heart
many of those people show up at my doorstep
I have photos with all of them
I pray for my friends and family everyday
plus my community and all our customers
there is so much pain
and love out there
but let us focus on the love


Hannah said hello
told me I’ve created
a new vortex in Big Sky
I am changing people’s hearts


At the farmer’s market
the first person we ran into
wife died of ALS
we cried and cried
then we ran into Whitney’s mom
she has ALS but can still walk
but she can’t talk or  eat
she had a dry erase board
we wrote to each other


I am unable to use a muscle below my neck
When a fly or mosquito is on my face
I am helpless
I am dependent on others
to swat
people can do what they want
to me
Jackie washes my face
with a warm washcloth
I have itches
I get thirsty
with a line up of drinks
in front of me
I can’t drink one of them


I went swimming
yesterday at Spanish Peaks
it was an adventure
they had a handicap chair lift
I was strapped in the chair
let down into the pool

Jackie unstrapped me
then held me
as I floated
my first reaction was to
bawl my eyes out

then I calmed down
we put my arms on
two blue noodles

I swam with Jackie
holding me
my face shivering
my teeth chattering
until the sun warmed me

I swam for almost an hour
it felt good to be weightless
Jackie had a smile on her face
the entire time

she had her arms around me
holding me up
the entire time

Tuesday, July 18, 2017

Here are all the pictures from soul shine celebration.  It was an amazing evening.  Here is the link:

Monday, July 17, 2017

The Captain's Seat

The Galesloot family just left
all the way from the Netherlands
another tear jerking goodbye

yesterday we went to Hebgen lake
we rented a pontoon boat
Curly brought his boat too
we had a tube, water skis, a paddle board

I spent the day in the captain’s chair
of the pontoon boat
not in my power chair

I was like Goldilocks trying
out seats on the boat
settling on the captain’s seat

it was a super sunny day
the lake was like glass
there was a rope swing
on the shore
everybody enjoyed

it was an incredible day

now I know I can go boating

Monday, July 10, 2017

Awesome Ain't Easy

I never thought I’d see
Ousel Falls again
but I wanted to take
David and Chris
my two college buddies
in town for a quick
two day visit

the only handicap
accessible trail in big sky

we left the house after four
as soon as I got outside
onto our driveway
we were greeted by thunder

when we arrived at the trailhead
it was still iffy out
so Chris carried our umbrella

then we discovered
the path had built-in log
obstacles to my power chair

in order to get over the logs
everyone was needed
someone held my shoulders
someone drove
someone else held my other shoulder
someone else tried to keep
my power chair on the path
someone else stood on top
of the big branch we found
on the trail
which we carried with us
someone else videoed 

 still my head got bonked every time
into my head rest on the chair
we had to speed up
to get over each log
I got thrown all over the place
but I got there
in one piece

we hung out at the falls
for quite awhile
I was amazed that I was there

on the return
we had to manage our way
back over each log

towards the end
Micah noticed
the chair was almost
out of power

we sped over
the last log
at the top of the trail
the chair died

we had to push the chair in manual
for the rest of the way
to get up the ramp into the van

we sent Micah home
to get the charger
we went up the mountain
to show Chris and David the mountain store

to top off an already epic day
we went to Curly’s restaurant
The Cabin for dinner
David and Chris loved the food
loved the atmosphere
especially the animal heads on the wall
authentic Montana

the night before
we went to Rainbow Ranch
for the music and happy hour
after dinner
we went to the fire pit by the river
David had his travel guitar
serenaded us for the rest of the evening

it was an amazing visit

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