The Robins discuss life with ALS

By Sarah Gianelli EBS Associate Editor

BIG SKY – Last July, Mark Robin was mountain biking the Mountain to Meadow connector trail with a small group of friends and his son Micah when he experienced difficulty changing the bike’s gears. Mark attributed the weakness in his hand to an injury he sustained mountain biking in Israel the previous summer. Not all-too-concerned, Mark made an appointment with a hand doctor, unaware that come September, it would not be a hand specialist he would be seeing, but the first of many neurologists.

A few weeks later, one of Mark’s employees at The Hungry Moose Market and Deli, a hub of the Big Sky community since Mark and his wife Jackie started the business in 1994, brought it to Mark’s attention that he was limping. There were other small signs, too—difficulty grasping the deli tongs and scooping change from the register.

In August, unable to ignore the mounting physical symptoms, Mark went to see Dr. Jeff Daniels at the Big Sky Medical Clinic, who suggested he see a neurologist. On Sept. 1, 2016, Mark was diagnosed with Amyotrophic Lateral Sclerosis (ALS), a progressive neurodegenerative disease that attacks the nerve cells that control voluntary muscle movement, also known as Lou Gehrig’s disease.

When I arrived for a May 31 interview, Mark was sitting in a motorized wheelchair at the kitchen table in the Robins’ sunny Ramshorn home across from one of his three sons, Micah. Michele Geppert, a former “Mooser” who the Robins’ employed as she put herself through nursing school, spoons vegetable soup to Mark’s lips and raises a straw in a glass of orange juice for him to sip. Mark’s arms—a constant source of pain—are stretched out stiffly before him; and at one point Geppert has to come over to pry Mark’s curled fingers flat again.

In the nine months since his diagnosis, Mark, 55, has gone from a fully mobile, self-professed workaholic to the confines of a wheelchair unable to move the muscles below his neck. He relies on a ventilator to support his compromised breathing, a catheter to drain his bladder, and he recently had a feeding tube installed in preparation for the day he can no longer swallow. He is completely dependent on his caregivers, which include his wife Jackie, and a group of rotating “angels” who have rallied around the Robins to provide the around-the-clock attention Mark needs—although they are still in need of more.

Mark Robin crossing the finish line of Harbor’s Hero Run on June 3, flanked by his two primary caregivers, his wife Jackie (left) and longtime friend Candice Brownmiller. PHOTO BY HEATHER MORRIS

“I’ve lost the ability to do anything myself,” Mark said, his voice a low, strained groan at times difficult to decipher. “I used to wake up every morning and walk the dog, clean the kitchen, clear out the dishwasher. Now I can’t do a thing. I can notice the messy counter, but I can’t clean it up. I can’t even open up mail. If I have an itch, I can’t itch it. Everything has to be done for me.”

The tears flow freely—but, imbued with a poet’s sensibility, this is nothing new for Mark—and Jackie does not sugarcoat their acutely challenging circumstances, but the mood in the Robins’ home is not maudlin. It’s real; it’s honest; and, in true survivor spirit, is mitigated by a determination to maintain a sense of humor and gratitude for the positive.

For Mark, the positive has been twofold. The ordeal has resuscitated a lifelong passion for writing—shortly after his diagnosis Mark resumed a blog that had languished for years and has since become the primary forum for his extended community to stay connected to his daily life and the illness’ progression. Although he lost his ability to type in January, his friends continue to transcribe his poetic musings that are very much in line with the observational style that has always defined his poetry.

Although Mark has been behind a counter since he was 5 years old—his family owned a candy store that doubled as a luncheonette in the hamlet of Hewlett, New York—after studying economics and writing at Columbia University, he pursued a career in the literary arts. Mark’s post-graduate years included working in New York City bookstores, teaching in “Bed-Stuy,” and publishing books of poetry. He and Jackie met in New York—a touching vignette best described in his blog—and moved to Los Angeles where Jackie had a job with Tennis magazine. Settling in Venice Beach, Mark began working at Beyond Baroque Literary Arts Center. Eventually he would run their poetry workshop and publish poems in LA Weekly.

“I’ve always been a writer,” Mark said. “It’s played second fiddle to the stores and family. But now that I have ALS it’s become more of a focus for me and has given me purpose.”

But it has been the sheer outpouring of love and support from the people whose lives the Robins have touched intimately or tangentially—evidenced by the overflowing basket of cards and letters, many addressed in a child’s scribble to “Marky Moose,” and the constant flow of visitors through their home—that has truly blown him away, and in which he has found the strength to continue.

“I’ve struggled with the will to live,” he said. “But I don’t have a choice. Things have happened to me, but I really have no choice but to accept them and to work past them. Every day you battle through it but my strong will to live has made me accept my pain. I get my strength from all the people who love me and help me.”

Mark has no illusions about himself or his life before ALS. He knows he was sometimes referred to as the “grumpy grocer” and both he and Jackie get snagged on the fact that so much of their lives has been consumed by work and their business.

“There’s a lot of irony in my life,” he said. “It’s ironic that I ran my business 24/7 and now I’m out of the business 24/7. It’s ironic that I’ve never been able to let go, and now I’m forced to let go.”

But, he said, “I’ve never had any regrets; we make choices and we live by those choices. The positive thing is I’m still around and I’m still living a very full life. I could live for a week or another 10 years—we just don’t know. But I want to be around for my kids, my wife, my community, my friends—there are so many people who care about you and you stick around to enjoy them and have fun together.”

“You can sit around and talk about writing poetry and ALS all day long,” Jackie said after the half hour it took for she and two other helpers to resituate Mark in his bed for bodywork treatment. “But really it’s a lot of man-handling. It’s this, all day long. It’s hard. It still feels surreal, like an alternate universe. Then again it always feels like an alternate universe—I mean, Trump’s our president.

“You don’t expect to wake up one day and find your life has gone completely upside down. It’s been a complete exercise in contradictions—he’s writing this beautiful blog, visitors come stay for a week and say they’ve been transformed. On the other hand, the reality is it’s freaking bloody hard. He’s losing his ability to speak and eat and swallow, and despite all that he laughs and makes jokes.”

Looking ahead, the Robin family is preparing for the descent of nearly 40 family members for the Soul Shine carnival and ALS awareness fundraiser the Hungry Moose is hosting as part of their sponsorship of the first Music in the Mountains concert on Thursday, June 22. The festivities commence at 5 p.m. in Big Sky’s Town Center Park.

To follow Mark’s literary explorations of his ongoing journey with ALS visit markymooseinbigsky.blogspot.com. Those interested in offering their caregiving services should contact Jackie at moose@hungrymoose.com.