Twenty-nine years ago, Carol Moeller began a mad dash that has carried her throughout her lifetime. She ran almost every morning before the sun came up, she finished a Long Island Marathon, and for years, she cajoled her sons to run with her — around the block, to a finish line, to anywhere and everywhere.
And when you ask her why she runs, her eyes light up, her mouth twists into a wry, secretive smile, and she begins scrawling on the notepad she now uses to communicate. “I got tired of eating lettuce,” she wrote in elegant purple print. Everyone around her laughed, and kept laughing. Things can be a little sad these days, but there’s no shortage of laughter in the Moeller household.
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This morning, Moeller, of Westbury — who two months ago discovered she had Bulbar Palsy, a degenerative disease that has stifled her voice, along with her ability to swallow — will lace up her running shoes and run the Long Island Marathon 10K with her sons, Brian, 38, Kevin, 37, and Dennis, 33, along with two of their spouses, Kevin Creamer, 37, and Mary Moeller, 39. Some time after that — she’s not sure when — the 67-year-old Carol will have a feeding tube inserted, an operation she postponed just so she could do this, at least one more time.
“It means the world to me to run tomorrow,” she wrote Saturday, surrounded by her boys, the sounds of her grandkids playing in the background (she has five, and one on the way). “I don’t know if I will be able to run next year.”
Despite the disease sapping her strength, “I will do it!” she wrote.
Bulbar Palsy is a rare motor neuron disease sometimes linked to ALS, and though it primarily affects the throat, tongue and jaw, many who have it see it spread to their limbs, a symptom common to ALS. The prognosis can be grave, but the Moellers are undaunted. Their mother was in peak physical form when she got sick and they have embarked on a widespread search for a clinical trial that will accept Carol.
“It’s been really hard,” said Kevin Moeller. “It’s such a rare disease, there’s not a lot of information out there and even getting a diagnosis of what was happening to her took several series of doctors two months . . . Now we’re in the process of scouring the country and scouring the world to find clinical trials or potential stem-cell treatments that could reduce some of the symptoms.”
And so Sunday heralds the most important run of this family’s life. The Moeller boys — none regular runners — have been running the 10K with their mother since 2008. Carol has placed second or third in that race four times, in addition to running the full marathon in 1991, and 16 half marathons. Save for one year when she was injured, she has run a race in every Long Island Marathon since 1988.
Kevin said “I’m almost in tears” when talking about what this 10K means to his mother. “It’s the defining piece of who she is as a person . . . It’s challenging for anyone to have to deal with a disease like this, but it’s a shock to your system when you’re a very active person.”
“It feels unreal to deal with it,” he added. “It’s literally like New Year’s Day and ‘Hey mom, your speech is slurring a little’ and then in a month or two, an inability to speak . . . But she has a determination of continuing not only fighting the disease, but to (hold on to) as much as she can of normal.”
Which means she doesn’t mind ribbing her sons relative lack of preparation, of course.
How much has Brian trained?
“Oh, not much at all,” he said.
Kevin: “I’ve run a couple of times.” He paused. “In the last five years.”
Carol, eyes widened, wore her exasperation plainly.
But there’s little doubt that all six will get to the finish line at Eisenhower Park. “She’s going to support me,” Dennis said. “And I haven’t trained at all.”
Dennis, like his brothers, is eternally hopeful. He doesn’t necessarily think this will be Carol’s last marathon experience — neither does Kevin, and Carol doesn’t seem to think this is her final run, either. She’ll be able to jog a little after her operation, as long as her health is good. “We (could) walk” next year, Dennis said. “It doesn’t have to be a run.”
But for now, Carol will savor every moment. When asked what she looks forward to the most, she flips open her notebook. The sentence is already written: “I want to be in the picture.”
“The picture” is the one they take at the finish line every year. She produces a number of them — Carol, beaming in the middle, her sons, slightly worse for wear, all around her.
“I think it’s incredibly important, incredibly special, emotional,” said Creamer, who will be running his first 10K with the rest of the family. “I feel a lot of gratitude to be able to run with the family this year. There’s going to be a lot of love going into (Sunday).”
And so love will propel Moeller, who will do what she’s long loved with the people she will never stop loving. She’ll run. Her sons and their spouses will run with her. And she has no plans to stop.