Wednesday, June 28, 2017

Friday I Went Fishing or My First Eye Gaze Poem

I went fishing
Curly bought me a license
but Renee insisted on paying for it

We went to the green bridge 
to meet Ben and Alex
but the handicap access
was gone
there was no room for me 
on the bridge
so I suggested we go 
to Moose Creek

the handicap access
was no longer there 
but we rolled on the grass
To the river’s edge
where I could watch
Ben and Alex catch fish

Alex gave me full credit
for his big fish
because I picked the spot

Monday, June 26, 2017

Welcome to Soul Shine Celebration

Welcome to Soul Shine. Thank you for being here. I’m so happy that you all could make it, it means so much to me. It is such a beautiful day. I hope everybody is having a good time. I am living every day to the fullest and I hope you are too. That’s why we are here, to help each other, have fun with each other, enjoy each other, to have joy with one another. Life is too short. Let’s party!

 That was my speech at Soul Shine Celebration 2017. Jackie spoke before me and she gave quite a speech. Jackie was a rock star. I made my speech with my electronic voice. People were shouting, “We love you Mark!” and “Fuck ALS!.”  We didn’t speak until 8:30 PM, but the party began at 5:00 PM and ended around 10:30PM. I was there until the very end. Jackie and I are always the last to leave a party.

Everybody was there! All my brothers, nieces, nephews, all of Jackie’s siblings, even my mother in law, some aunts, uncles and a very special cousin who surprised me along with my friends and the Big Sky community. Jackie and I danced to the beautiful voice of Lauren Jackson. Jackie almost ran over Zion, Jamie’s two-year-old son with my power chair but only hit his head with my eye gaze computer. She almost threw me out of my power chair. But we danced and danced, and the rest of our family, friends and the community joined us.

Eventually I got tired and went back to the family tent where I had a safe place to rest set up. Candice was by my side all night. I rested there until it was time for Jackie and me to speak. After our speech, I went back to my spot in the family tent. Somehow a line formed to visit with me. I held court the rest of the night, one set of visitors at a time. Next year we should charge a fee to see me, like a kissing booth.

The evening was magnificent. There was so much more to the evening. I didn’t get to see any of the carnival nor the photo booth. I heard about it all from my relatives, so I got them to write about it:

“Seeing my mom and dad on stage talking to the entire community of Big Sky was the most touching moment of my life. After my dad’s speech the crowd was so pumped that the roar brought tears to me, and most everyone else’s eyes. I can safely say that everyone felt the love all night long. Love you so much dad. You are an inspiration to us all.” –Andrew Robin

“Not surprisingly, Soul Shine far exceeded all expectations.  We were embraced by the love of Mark & Jackie’s family & friends and the entire Big Sky community. People came in droves from all over and the deep emotions bound us together.  That comforting warmth will stay with us forever. My brother’s love of life is only exceeded by the love that everyone has given back to him. All our love to our extended Robin/Roberts family and the amazing Big Sky community with gratitude for all their support, with extra kisses to the special angels who make everything possible.”  - Cyndy & Harold Robin

“In an attempt to describe Soul Shine, the first word that comes to mind is ‘profound.’ The amount of love and generosity that poured in from the Big Sky community for the Robin/Roberts family – profound. The support offered by the local and national ALS organizations, emotionally & physically – profound. The music, the food, the energy and atmosphere of Soul Shine – profound. However, the most memorable, the most significant, and the most profound aspect of Soul Shine was witnessing Mark’s unwavering patience and strength; he has given us the gift of humility, and we are all better for it. Soul Shine was the perfect opportunity for all the souls of Big Sky to come together, and appreciate the beauty of life. But, of all the souls present, Mark’s shined the brightest.” – Erin Johnston (Andrew’s girlfriend)

“I am not great at keeping secrets, but I managed to surprise Mark and Jackie by showing up at Soul Shine unexpectedly. Mark’s smile and emotion when he saw me in his living room filled me with enough joy and light to last the year. Mark never fails to make me feel loved, adored, and grateful to belong to this family. Mark has always lived with his heart on his sleeve. His generosity and openness make the people around him feel more alive. This has only become more true in the last year. It is incredibly powerful to witness the love and support that Mark and Jackie’s friends, family, and Big Sky community have shown them, but it is no surprise - it is a reflection of the love and support they have offered to their many, many loved ones over the years. I love you, Mark.” –Ruthie Ballenzweig (Mark’s cousin)

Dear Mark,
We are thankful to you and Jackie for bringing us all together for the Soul Shine celebration.  It has been a wonderful, beautiful experience!  We enjoyed the concert, spending time with family, meeting your friends and exploring the beauty of Big Sky. We have soaked in the warm Montana sunshine (Shelby especially enjoyed the respite from NYC).  We actually got ourselves soaked while navigating the rapids of the Gallatin River (a first for Clay), and it was totally thrilling.  We traversed the rocky mountain terrain of Lava Lake (and witnessed Jacob almost kill himself at least 5 times).  The cousins enjoyed bonding in the “Lincoln-log house”, and it was so special since it has been a pretty long time since we were all together.  This has been such an amazing experience and we are so overwhelmed with happiness that we got to spend this time with you!
All our love, Ben, Stacy, Clay, Shelby and Jacob Robin

This weekend was beyond words. 
·      Over hearing Jacob tell Stacy he doesn’t want to leave Montana.
·      Watching Clay smile while he beat the Class 4 rapids on the Mad Mile.
·      Shelby and Jacob giggling uncontrollably with her cousins late at night when most of the grownups had gone to bed.
·      The kids discovering that Blue Grass is good music while dancing the night away at Soul Shine.
·      You and I watching the last few innings of the Mets game when I was supposed to be helping you nap.
I am so happy that Stacy, the kids and I were able to share this with the Montana cousins.
Love ya Bro,
Ben Robin

“All of the Robin Cousins (tweet tweet) came together this week for the first time in almost four years to reunite. More importantly, this week was dedicated to showing our unconditional love for each other and our entire family, which came quite easily. We are both overwhelmed with many emotions, but are so grateful to have been able to spend all of this time with everyone here. The connection and spirit we have felt with our family this past week is indescribable. After a week full of smiles and laughter in our home away from home, the time we had this week will never be forgotten.” Love, Matthew and Alyssa Robin

Thursday, June 22, 2017

The Night Before Soul Shine Celebration

we did a test run
at farmer's market last night
saw lots of people
got lots of hugs and kisses

lots of family have arrived
the celebration has already begun
The Family!
My Girls!
The Kids raising tips for ALS!
Jackie bought me a petrified wood necklace from the Gallatin from the Swenson's!
My Nephew Josh!

Layla's Bat Mitzvah

the power is in you
to do anything you want
that was the main message
at Layla's Bat Mitzvah

Wednesday, June 21, 2017

Explore Big Sky Article

This article about me appeared in the current issue of Explore Big Sky:

Tuesday, June 13, 2017

A Run, A Wedding , An Infection and An Injection

Harbor’s Hero Run

we arrived at the same time
as Candice
just in time
for the color guard
by the local boy scouts
Harbor’s classmates
the scout leader shouted out
friends of Harbor
Marky Moose
I burst into tears

the race began
Jackie ran my chair
off we went
up and down
over pot holes
Candice running by my side
Nettie and Ben Q too

it was hard on my body
being thrown sideways
by the cracks in the road

just before the finish
we parted the ice cream line
that was crossing the road
everyone clapped and cheered
the real finish line
was just ahead
more cheers and a photo op

I was exhausted
even though I was sitting the whole time
after the thrill of the finish
I burst into tears again

then held court at the covered bus stop
some of our staff came to say hello
other friends stopped by

Kristin and her eight month old
daughter, Freyja Harbor
born on Harbor’s birthday
hung out with us

Kristin let me hold Freyja
even though I can’t hold anything
Freyja ripped off my sunglasses
God Bless her

Shannon and Tyler’s Wedding

on the same day
we had a four o’clock wedding
it was a fast turn around
but I was determined

somehow we hit the road
by four o’oclock
the wedding was an hour away
we didn’t want to miss the ceremony
arrived just in time
greeted by the parents of the groom
the venue was on grass
so I was thrown around
in my chair some more

the ceremony was super sweet
Shannon was so excited
she kept pumping her fists

on to the reception
over more grass
we sat at a table outside
a short distance away
from the pavilion

Shannon and Tyler made their way
over to say hello
Tyler kept saying
how much it meant to them that we were there
Shannon kept kissing me
saying I love you

a young couple from Big Sky
came over to say hello
Holly told me
she had asked me
years ago
to sponsor
her Artscape project
for outdoor art

she told me
I changed her life
when I told her back then
I would sponsor her project
because she was persistent

her husband Matt who we knew
because he painted the walls
of the mountain store
told me it helped him as well
because he got to do his art outside

we drifted over to the pavilion
where we watched
Shannon and Tyler’s first dance
a super slow start that turned into
a lively choreographed performance
by the bride and groom
and the wedding party
it was so special
I felt honored to see it

The Infection

on Sunday I woke up
with a fever, chills and a racing heartrate.
turns out it was a UTI
when you have a catheter

as great as Saturday was
Sunday was awful
eventually Dr. Daniels
prescribed an antibiotic
paid us a housecall
by Monday I was feeling better
though my low grade fever
still persists

The Injection

my shoulders have been killing me
I also have pain in my biceps and triceps
At the ALS clinic in Salt Lake
the PT and doctor told me to get cortisone shots
two weeks later with no reduction in pain
I finally went in to see the orthopedic PA
Jackie, Micah and I were in the van by 7:30 on Friday
Got the shots. Shoulder pain less
but biceps and triceps
still ache and sometimes fire
they are super tight
and keep me up at night

Tuesday, June 6, 2017

On The Back Porch

a red tail hawk
in the white puffy clouds
soars up high
into the sunny pale blue sky
where it circles slowly
enjoying the windless time

suddenly it disappears
five minutes later
I find it flying
over the grassy hill and trees
across the highway
over the brown river

the river turned brown
because of last nights rain

swallows fly around the house
the trees in the yard
the unmade trampoline
the recently mowed green grass lawn

I am sitting on the back porch
for the first time
since I got my power chair

it has been at least six months
I could not get through the door
Josh and Todd put in a wider door

now I can enjoy the sunshine
fresh air
by simply rolling out on the back porch

a mountain bluebird
quickly flies by