Soul Shine Celebration June 22 2017

we are throwing a big party
as a benefit for ALS
as a thank you to the Big Sky community
to listen to good music
to have good old fashioned fun
a carnival for kids of all ages
food, drink and more fun
we hope you all can make it
to learn more about the organizations
we encourage you to support
visit bigskysoulshine.org

SOUL SHINE CELEBRATION - The Hungry Moose Market and Deli Adds Carnival and ALS Awareness to Annual Community Event

June 22, 2017 Town Center Stage Park beginning at 5pm

As in past years, The Hungry Moose Market and Deli will sponsor the first Music in the Mountains Concert Series on June 22nd. But this June, the event has been enhanced to both thank and celebrate the Big Sky Community and to raise awareness about a disease that has hit home for The Robin family, the owners of the Hungry Moose.

Last September, Mark Robin was diagnosed with Amytrophic Lateral Sclerosis (ALS), also known as Lou Gherig’s disease. Since that time, the Robin family, along with their close friends, family and the community of Big Sky has learned first hand the devastating effects of this disease on a previously very healthy individual. “The disease is dark” says Jackie Robin “but the outpouring of love and support for our family has been nothing but light-filled. We are overwhelmed.”

The inspiration for the name Soul Shine came from one of many hand made cards Mark has received from local kids who know him as Marky Moose. It read, “you have Soul Shine. I love you”.

In honor of Mark, and as a thank you to the community for their outpouring of support, this year’s concert event featuring The L’il Smokies and the Gallatin Grass Project will also include a free carnival beginning at 5pm. Additional music by Lauren Jackson, complimentary food and drinks, games, a dunking booth, a balloon-artist clown, face- painting, cotton candy and more, are all planned.

“The Hungry Moose family—and the Robin family—have never been more grateful to our friends, employees, customers and community,” explains Jackie Robin. “our staff has done a fantastic job managing both stores, our customers have been loyal, and we’ve been overwhelmed with the help and support we’ve received from so many.”

The Robin family has identified two organizations working to support people with ALS and their famiies and one research facility working on treatments. The Evergreen Chapter of the National ALS society is located near Seattle but covers Montana and has been a great resource for the Robin Family. Team Gleason-founded and inspired by former NFL player, Steve Gleason focuses on the quality of life of the ALS sufferer providing technology grants and helping families realize dreams of travel and adventure. Massachusetts General Hospital ALS clinic is dedicated to finding treatments to ease the path of a person with ALS.

Donations to any of these three organizations are gratefully encouraged. There will be an information tent for all three at the Soul Shine Celebration or visit https://bigskysoulshine.org to learn more and contribute online.

To follow Mark Robin’s life with ALS, visit his blog, markymooseinbigsky.blogspot.com. or check out  Soul Shine on Facebook at https://www.facebook.com/BigSkySoulShine and link to the blog and giving opportunities. 

Operation Free Willy

Friday at 11:30 am

we headed to Bozeman

for my supra pubic catheter

the procedure was scheduled for 1:00 pm

we arrived early

for a change

Hanna, our nurse for the day

found us in the waiting room

took us away

to our small triage room

Hanna clamped down

my Foley catheter

she gave me an IV

in case I needed pain killers

met with the doctor

who went over the procedure with us

after that we went to radiology

there were at least six people

in the operation room

working on me

two guys from radiology hoisted me

on to the table from my power chair

firing up my shoulders

the clamp came undone

they had to put liquid into my bladder

computers showing x-rays into my body

hovered above

I was on my ventilator

breathing steadily

Cara, the second nurse

massaged my feet

Hanna, my cheerleader, kept

telling me how good I was doing

the doctor proceeded steadily

starting with local anesthetic

putting a hole through my waist

into my bladder

Hanna announced

the procedure was complete

she told me I had something on Jackie

I had done the procedure with no pain meds

Cara removed the Foley catheter

Willy was free

Jackie and Tracy came out

from behind the window and joined me

this time we put on a gait belt

the two guys from radiology

hoisted me back into my power chair

*

today is Sunday

I am still very sore

at the incision

Mimi and Kathy

arrived late Friday night

have been helping

with my recovery

Micah arrived late on Thursday

driving 15 hours home from college

in the snow and rain

he too has been helping

last night I moaned and groaned

all night long

as Kathy and Mimi

took turns

trying to make me comfortable

I’m impossible

*

I’m nervous about Salt Lake City

we leave on Tuesday

clinic on Wednesday

PEG tube on Thursday

home on Friday

I’m still not recovered from

the supra pubic catheter

yet I’m scheduled

for more

say a prayer for me

wish me good luck

I’m sure I’ll be fine

but I could use all the help I can get

in the meantime

Willy is free

A Visit From Dan and David

on a whim
I asked Dan and David
to do a guest blog
here it is:


May 18, 2017

Mark asked David (Chertok) and me (Dan Jaffe) to blog about him.
Here is a visitors-from-afar perspective.  I know this is too long, but I broke it up into categories (and David added his own to mine for a unified blog, so "I" is "we", well at least sometimes):

Courage

I have a colleague who says "courage" as a way to end every conversation.  It is a greeting, like a goodbye--see you later.  Now, Courage, real Courage, flows from Mark's every breath.  From the beginning of a conversation to its end.  From each movement; from each swallow of a bite or drink.

Where Have We Been?

Here is what we have reminisced about: Carman 12.  We all grew up together.  Mark remembers smoking the shit out of a joint on Carman 12 with David and me.  We both deny the memory, for professional reasons.  I recall Mark teaching me second semester calculus on the eve of the final exam, because until then I thought I did not really need to study.  Such patience as I crammed my way through.  The Carman 12 cast of characters, many still in touch—even if 1 degree removed.   Mark's Spring Semester Junior year in Israel.  He and David travelled to Turkey and Greece. Mark remembers that David met some Midnight Express heroin dealer-like person in Istanbul and brought him to meet Mark and Shelley Levine; David of course remembers no such thing.
More recently, we all reconnected at reunion 25.  I visited in Big Sky with my two sons a few years ago.  Howie has no recollection but he showed us the mountain.  Mark and Jackie and their Howie visited with David and Hannush in Tel Aviv a year and a half ago, and Mark and Micah a few years before.  They claim David knows all the best eateries.

How Is Mark?

He is still Mark.  He is the same Mark.  He still makes me laugh.  He still has a glimmer in his eye.  He still has a beautiful smile.  He still has a crazy-sweet disposition.  He still can make great conversation.  He still laughs.  He still has an incredible appreciation, understanding and acceptance of human folly.  He still loves, a lot.

How is Mark's ALS?

It sucks worse than I imagined.  I had never known a person with ALS.  Mark cannot control his muscles from the neck down.  His mind and his senses are completely intact.  The good news is that he can think, smell, taste, see (like an eagle) and feel (literally everything, clothing wrinkles included) just fine.  He enjoys food and we all enjoyed a great bottle of Willamette Valley Pinot last night.
Mark's inner organs seem to work pretty well (lungs need a little help now and again).  The cruel part is that even though Mark cannot control his limbs or torso, he senses pain whenever something is painful, just like the rest of us.  Imagine how stiff you would get being unable to move.  He feels stiffness, pain, discomfort.  Oh, and he sleeps poorly, when he sleeps.  Sucks.  These symptoms (pain, stiffness, can't scratch an itch, need attendants for routine needs) cause incredible frustration, torture in some ways.  Mark weathers it very well.  Despite the most frustrating of circumstances imaginable, he always knows and shows his love and appreciation.

How is Mark's Spirit?

Remarkable.  He takes incredible comfort from the love of/from his family and friends.  He has an absolutely astonishing group of caregivers and volunteers from his Big Sky community.  People who love him enough to feed him, help him with the bathroom, cook, clean, foot massage him asleep.  People who have taken the time to learn how to work the incredibly complicated chair Mark is stuck in.  And if Mark's Big Sky community is the periphery of support, Jackie is the Core (and Howie is in there too).  Courage and strength.  Courage and strength.
With empathy, and an outpouring of love,  Dan and David.

Mother's Day Weekend

Jackie’s Dad

still selling pools at 78

on the phone with customers 

once in awhile

hard of hearing

my voice so soft

I’m not sure

he heard a word I said

very attentive

to my needs

he fed me

with shaking hands

rubbed my feet

for hours on end

chief dish and bottle washer

as soon as we finished eating

the dirty plate disappeared

into the sink or dishwasher

Uncle Gordie

Jack’s youngest brother

59 year old

retired hockey player

we woke him up

during the night

for transfers to the commode

asked a lot of questions

was so helpful

when they left on Sunday

Gordie said to me

with a tear in his eye

before this visit I liked you

now I love you

he left me

an autographed photo

that said

My hero. Stay strong

The Morris Family

On Saturday night

in a snowstorm

Jackie, Gordie, Jack and I

went to the Morris’ new home

for dinner

their four kids had a welcome sign

above the front door

when we arrived

we discovered there were

two steps into the house

Heather was thinking when I asked

they had a flat entry

but no, the two steps were there

the driveway was full of snow and mud

totally dejected

I was ready to turn back for home

Jackie’s resilience plus

Matt and Heather’s determination

figured out a way in

through the garage

frantic moving of their car

and other items in the garage

allowed Jackie to manouvre

the van into a spot

where the ramp

could unload onto one step

enabling me and

my 500 pound

power chair

to enter the house

what a beautiful home

though I only saw the first floor

after getting into the house

I needed a break

so I went upside down

in a room off the living room

but everyone followed me in there

so excited to see me

in their home

dinner was delicious

Heather fed me

with such pleasure

even though I insisted

she didn’t eat a thing

the dinner conversation

turned from baseball to hockey

Jack told old time hockey stories

about himself, the young Gordie

and their dad

the four Morris kids 10 and under

paraded through the house

with smiles on their faces

joy in their hearts

it was an amazing evening

*

the next day Jackie, Howie and I

went out for dinner

spontaneously for Mother’s Day

arriving outside

the restaurant

I rolled out of the van

who was there

but the Morris family

the kids with big smiles

Heather with kisses

Matt with a hey buddy

Karin and Jason and their kids

were there as well

more smiles and kisses

the restaurant was full of locals

I was overwhelmed with love

Candice

in the morning

Candice came into our room

in tears, exhausted from the night

to help me get to the commode

Jackie wished Candice

Happy Mother’s Day

she burst into more tears

we were all crying

Jackie gave her a big hug

I gave her some kisses

we ended up spending the day together

taking a trip to Harbor’s tree

in the Big Sky community park

by the ball fields

Candice hung a dream catcher

and Tibetan prayer flags

Buddy jumped up on the tree

as if playing with Harbor

we took a walk along the river

talked about Harbor

learned he had a Paris pen pal

a boy he met in a Moab Brewery

I looked at the river

reminiscing of my fly fishing days

when we got back to the car

I looked at Jackie and said

let’s go out for dinner

it’s Mother’s Day