Still Sick

UUUUuuuuuhhhhh
AAAaaaaaaaaaaaaa
cough cough cough cough
hnnnnnnnnnnnnnn

I'm still sick
two weeks later
goddamnit

oooooooooohh
cough cough cough gasp
cough cough cough gasp
(jackie: You said that already)
smile

gurgle gurgle spit spit
mmmmmmmmmmmm

I've been driving everyone crazy
mmmmnmnnnnmmm
including myself

i've been moaning and groaning
every day all day long
cough cough cough aaaah
oooooooooohhhhhhh

I can't take it anymore
something has to give
















Jackie: it's been a rough go lately
but we try to get out for a walk every day
we welcome a few visitors
in between or during coughing sessions
I think (hope) the coughing will slow down soon
next week ALS clinic in Salt Lake City

#whatwouldyougive

why does my body require

so many goddamn machines

the ventilator, the cough assist, the suction,

the oxygen, the power chair, the airbed

I also have two additional body parts

the feeding tube

the supra pubic catheter

I have a common cold

with a bad cough

it feels like I’m going to die

is it worth all the trouble

everybody in this town loves me

they want me around

I ended up in the hospital

last Saturday for

a common cold and a UTI

I guess there is something

nasty growing in my urine

I need to fight the nasty

whatever it is

stay out of the hospital

as soon as we got home

I was feverish

Dr. Daniels made

yet another house call

on a Sunday

he told us to take the antibiotic

three times a day instead of two

Ben came over from the store

with a selection of

over the counter cold meds

Dr. Daniels picked out a couple

for me to put through my feeding tube

three days later I realized

they were making me loopy

I think I took a turn for the better today

but I’m still coughing and spitting a ton

I still can’t eat or drink by mouth

ice chips only since Sunday

I ventilated for two and a half hours

watching House Of Cards

and the Mets

lose another one in the ninth

very little coughing

but as soon as I was off

I started hacking away

I moan and groan a lot

Jackie says I sound like

the old man next door

with the horrible cough

that just won’t stop

stay tuned

*

meanwhile there’s a new movement

TEAM BIG SKY

part of a bigger movement

#whatwouldyougive

on Wednesday Barbara and Katie

set up a table on The Moose patio

Barbara gave up her voice

Katie gave up her dominant arm

Jackie posed with donors holding the sign

Barbara wrote like a fiend

next time she will have to give up

her dominant arm as well

they raised a bunch of money

for a non-profit biotech company
working on

a cure for ALS

this Monday

Jackie is going to give up

five things for five hours

her voice

her ability to write

or use a device to communicate

solid food

her ability to feed herself

her ability to take care of me

she plans to start her time

at Community yoga at 11

across from the store

on the Town Center stage

then sit at the donation table

until 4pm

she will invite others

to take care of her

Learn more about #whatwouldyougive

http://www.als.net/what-would-you-give/#sarah-coglianese

donate through Team Big Sky (there are two of us with ALS in Big Sky)

https://www.classy.org/team/126614

If you can, take a photo of yourself holding the sign and post to social media with the link to donate through Team Big Sky and #whatwouldyougive

tag Jackie Roberts Robin so we can see it too

 Katherine "Kit" Watson the other half of Team Big Sky

Family Gone Fishing

 

Mr. Harder was wearing a red, white and blue pair of sunglasses at a Thursday night concert. Micah was talking to him and noticed the sunglasses. He used to have the same exact pair. They were vintage Iski sunglasses that Micah bought on Ebay. Mr. Harder immediately took them off and gave them to Micah.

Mr. Harder was given the sunglasses by one of his students who found them on the Gallatin. She told him he was the only person she knew who could rock those sunglasses.

Micah lost them on the Gallatin River. We were fishing together. I caught a couple of small trout. I fell inexplicably while walking on some dry rocks. That was a year ago.  That was the last time I cast a fly.

Andrew and Micah went fishing a few days ago. Jackie and I tried to follow but the trail was too wonky. Andrew caught a big brown trout using the caddis fly I picked out for him.

The evening before, we went fishing together with Ben 

Johnson one of my managers. Ben helped set them up off the 

bike path. Andrew caught a nice fish for a small stream even though he was wearing flip-flops.

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