By Bella Butler EBS STAFF
BIG SKY – On Election Day 2016, two months after being diagnosed with amyotrophic lateral sclerosis, long-time Big Sky local Mark Robin took to his blog.
Under the name “Marky Moose in Big Sky,” Mark often wrote about his family, his business and his community. His posts were honest and poetic, much like the man himself. On this particular day, he expressed his feelings about the election results and then wrote about his current state:
“Everyday when I wake up
in the morning and I struggle
to get out of bed
I know that this is my reality
and there is no way out
except to be strong and positive
and to surround myself with people
I love and enjoy”
Mark lived with ALS for 13 more months before passing away on Dec. 18, 2017; 13 months surrounded by people he loved and enjoyed.
In 1993, Mark moved to Big Sky with his wife, Jackie, and the couple started their business, The Hungry Moose Market & Deli, the following year. As a longtime local and owner of a community centering point, the roster of people Mark loved—and who loved Mark dearly—was robust.
The Robins always embraced community. You couldn’t walk into the Moose without being greeted by Mark and enveloped in conversation with Jackie. They donated time, money and goods to various local causes, and their sons Micah, Andrew and Howie remember their dad frequently slipping free ice cream cones to kids over the counter.
When Mark was diagnosed, the community took on a whole new meaning—and necessity—for the Robin family.
“For Mark, he lost everything within nine months,” Jackie said. Everything included his ability to walk, talk and, eventually, to breathe. From friends like Tracy Jacobson and Candice Brownmiller, who took shifts caretaking for Mark, to others like Klaudia Kosiak, who would play piano for him, the Robins were inundated with Big Sky’s spirit.
Jackie split her time between mothering three sons, running a business and caring for Mark, and would assign willing friends tasks she didn’t have time to do, things like researching different technologies and tools to help Mark write and speak.
In summer of 2017, the Hungry Moose, a regular sponsor each summer for one of the Arts Council of Big Sky’s Thursday night concerts, utilized the show as a way to thank the community for its role in supporting their family and business, and to raise funds for ALS-related causes.
Four years later, the summer event, known as Soul Shine and still sponsored by the Hungry Moose—now owned by Kristin Kern—celebrates Mark’s life and reinvigorates the community.
“I feel like the spirit of Soul Shine is … allowing yourself to feel the emotions in a sense,” said Andrew, 28. “It’s there to be happy and sad.”
“It’s a kind of seeing the shine in a lot of things and keeping your head up,” added Howie, 21.
Mark’s sons say their father was the embodiment of Soul Shine. “He was never someone who was afraid to hide his emotions,” Andrew said. “Any speech he gave for bar mitzvahs or whatnot, he would tear up and cry with tears of joy. Always.”
Soul Shine as an event has seen numerous iterations over the years, but the Big Sky staple has remained steadfast in its local ties through community anchors.
Local band Dammit Lauren!, featuring longtime Moose employee and friend Lauren Jackson as lead singer, has performed at every Soul Shine and was this year joined on stage at the Aug. 12 event by local group and event opener Moonlight Moonlight.
Before the music, the Robins led a community bike ride through town, finishing at the Hummocks trail, a favorite of Mark’s and a local go-to. The parade of bikers, young and old, was decorated with riders donning ear-to-ear smiles and signature Soul Shine shirts from various years of the event; “vintage,” Jackie called them.
In between sets on stage at Len Hill Park, Jackie, Howie, Micah and Andrew hopped on stage as they have each year since the first Soul Shine when Mark was there to join them. Jackie shared a bit about Mark and how Soul Shine came to be.
“The element of Soul Shine is really all about gratitude,” she said to a crowd of an estimated 2,500-plus, “because the Big Sky community rallied around us like you wouldn’t believe. So, we created Soul Shine. It’s music, it’s fun, it’s celebration.”
This year’s event also raised funds for Team Gleason, a nonprofit that provides various kinds of support to those living with ALS.
The ALS Therapy Development Institute says approximately 30,000 Americans are living with the neurodegenerative disease. Yet Big Sky, a town of roughly 3,000 people, suffered another blow in 2019 when another resident was also diagnosed with ALS.
Eric Bertelson, 43, moved to Big Sky with his wife Janie and three sons in 2017. Two years later, Eric began to feel symptoms and was diagnosed with ALS. Emily Potts, Janie’s sister, remembers Eric telling her stories of the early warning signs.
“He was playing catch with his son Mac,” Emily remembers. “Mac [threw] the ball over his head and Eric went to go catch the ball, but his arms didn’t go up.”
The Bertelson family was largely private about Eric’s diagnosis at first, but as his condition worsened, Emily created a spreadsheet with tasks the family needed help with and a network of community members that had volunteered their time.
“I would email the spreadsheet out and the list of people just kind of grew and grew,” Emily said, “because people would text me or call me or reach out and say ‘Is there anything we can possibly do for the Bertelsons?’”
Two weeks before Soul Shine this year, Emily reached out to Jackie to tell her that Janie was looking for an avenue to express her gratitude to the community and wanted Emily to speak on behalf of the Bertelson family at the event. Jackie included Emily without question in a true embrace of the Soul Shine spirit.
“Taking hardship or really hard things and then being open and bringing in the community… I think that is what we did and what Soul Shine is kind of all about,” she said.
On the stage at this year’s Soul Shine, Jackie shared the mic with Emily.
“Eric has lived with ALS for 28 months,” Emily told the crowd. “And while it has taken almost everything from him, it has not diminished his heart, mind or indomitable spirit. He greets each new day with a smile. And he makes the most of every precious moment.”
Janie and Emily’s sister, Kate Gilbane, who lives on the East Coast, shared a video on social media of Emily and Jackie speaking at Soul Shine. The post raised nearly $11,000 for Team Gleason.
The Bertelson’s oldest son Mac, 12, is now a freeride skier with the Big Sky Ski Education Foundation. Micah, 24, is one of his coaches.
“It’s just kind of cool to have this connection with his family and be able to pick out his line and go to ski competitions and … take a video that I can send to his dad,” Micah said.
Not unlike the way the brightest wildflowers will grow where land has burned, a strong community often transforms hardship into vibrancy. Misfortune becomes a catalyst for community gathering, for basking in Soul Shine, and for expressing love.
In his 2016 blog post, Mark concluded with what can only now be considered a prophetic declaration; a gaze into future Soul Shines:
“I know that despite all this craziness
I will always be surrounded by love.”