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

Here are all the pictures from soul shine celebration.  It was an amazing evening.  Here is the link:
http://eyeintheskyphotography.pass.us/170624soulshinefinal/

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

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

4th of July Peeworks

4^th 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