Wednesday, May 31, 2017

My Cousin Lynn Kellermann


Thursday, May 25th my cousin Lynnie
died of complications from brain cancer
she battled for three years

I was so happy to talk to Lynnie at Passover
every time we spoke I was somewhat aware 
it could be the last time we spoke
I really didn’t know what Lynnie’s day to day was like
I can only imagine how difficult it was

Lynnie told me she produced tv stories 
about people with ALS
she understood what I was dealing with
she felt terrible

we spoke for about half an hour
I don't remember what else we talked about
it was just so special
to hear her voice

I have many memories of Lynnie 
I adored the way Lynnie called Harold Rah 
growing up I always wanted to go 
to the house in Farmingdale 
spend time with Lynnie
it was very hilly there
I faintly remember sledding and biking
down the hills

Lynnie loved her time in Montana
I remember her distinctly 
at Micah’s Bar Mitzvah weekend
the Thursday night before
we had a more intimate gathering at our house
Lynnie was there
I remember her loving 
the double rainbow we had that evening 
outside the window
over the river by our house

when she came back to Montana with Nathan 
on vacation we took a hike together in Beehive Basin
Micah and Nathan slid on snow at the top
it was in August
I caught some fish in the alpine lake
Lynnie was beside herself in joy

I loved Lynnie
I always enjoyed seeing her 
spending time with her 
though in our lives we hardly ever saw each other

I will always treasure the time we did spend together







 



 






Tuesday, May 30, 2017

Memorial Day BBQ

the Rowley-Middletons
built me a ramp
so I could actually
get into their house
onto their back porch
to see the river rushing by
work on my tan
enjoy the sunny warm
unusual spring weather

now I have another house
I can get into
thank god for good friends

Howie's back from skiing in the Beartooths

Hanging out with Debby and Juliana
Getting some love from Barbara with Renee and Emma
Visiting with Renee on the back porch
Getting some love from Buddy
Getting some love from Jackie
The dinner scene

Monday, May 29, 2017

Things Are Looking Up And Down






feeding tube check
supra pubic catheter check
healthy yellow pee check
liquid hope, food for feeding tube ordered check

but the feeding tube needs to be flushed
every four hours
the supra pubic catheter causes bladder spasms
whenever I have gas
the ventilator which I need to use
eight hours a day
causes gas

I have had a low grade fever
for two weeks 

the pain in my arms is firing up
making me not able to think straight
we keep trying new arm pillows
but nothing seems to work

the ALS clinic in Salt Lake
was very useful
but in the end
nothing was truly accomplished
all my issues
are still here

but I don’t go pee anymore
well, I do
but straight from my bladder
into a bag

I don’t have to eat anymore
or swallow pills
but I still can
if I want to

things keep progressing
it’s a boxing match
I’ll never win
but I’ll stay on my feet
or in my chair


First Stop: In And Out Burger


Micah is learning how to use the cough assist 




























A long day at the ALS clinic
It's a potty party
Cousins Jessica and Hunter join the Robin family for a sushi party the night before my feeding tube procedure
After getting the feeding tube

Candice exhausted


Andrew says Good-bye as we leave Salt Lake City


Back from Salt Lake City
Out for a walk with Cece and Nahza







Blogging this post with Cece

Monday, May 22, 2017

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. 

Sunday, May 21, 2017

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










Friday, May 19, 2017

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.