Shannon Griefer ran a 135-mile ultramarathon in Death Valley in the middle of July, across the scorching hot terrain in the glow of the fiery sun.
And on April 13, she was slated to run 135 miles, this time to benefit reserch into a condition she was diagnosed with in 2005: multiple sclerosis (MS). Despite her illness, Griefer, a 52-year-old mother of three, doesn’t let the disease slow her down.
“My ultramarathon running is a metaphor for my life and for my disease,” she said. “It hurts to run 100 miles and you feel bad and you want to quit. But you can’t just quit and leave the race. You have to keep going. And you have to keep fighting MS. It’s the perfect thing for me to do to help others who have it a lot worse than me.”
It seemed natural, then, for her to be selected to kick off this year’s MS Run the U.S., a 3,000-mile relay beginning in Calabasas and ending four months later in New York City. Griefer’s assigned segment included the Santa Clarita Valley, Palmdale and Victorville, where temperatures dip to 40 degrees at night at this time of year. She expected to run to Barstow over the course of two days.
“If it’s 2 a.m. and I’m tired and freezing, I’ll sleep until sunrise or take a break until the sun comes out,” she told the Journal before the relay, which took place after this issue’s press deadline.
MS affects an estimated 400,000 in the United States alone, according to the National Multiple Sclerosis Society. It occurs when the immune system attacks myelin, the substance that surrounds and shields the central nervous system’s nerve fibers, as well as the nerve fibers themselves. The damaged myelin forms scar tissue, which interrupts the nerve impulses that go to and from the brain and spinal cord. Symptoms can include walking and balance issues, fatigue, cognitive dysfunction, pain and depression.
Griefer, an entrepreneur, owns Moeben, a sportswear company specializing in UV-protective arm sleeves, and swimwear business Jetanna. She also coaches ultramarathon runners on the side and volunteers at a children’s hospital. She said that nine years ago, when she was first diagnosed, she was having hallucinations, even while running. Her neurologist told her that an upcoming run she was set to compete in would be her last; afterward, she took a vacation with her husband at the time, who wanted her to relax before starting treatment. On the trip, she became pregnant with her third son. No new lesions appeared on her brain for a while, which the doctor told her was a miracle.
These days, she can still function well — every week she runs 20 to 30 miles while training around her home in Hidden Hills. But she does face physical challenges on a regular basis.
“My left side is mostly affected,” she said. “At times I wear a sling, because the arm becomes dead weight. I need help getting dressed sometimes.”
In the past, she’s also lost hair and gained weight when receiving injections of Copaxone, a drug designed to decrease the frequency of MS relapses. Right now, she has 60 lesions on her brain.
Maybe all of these difficulties are actually part of why she continues to run.
“When people are given this diagnosis, they get depressed and they don’t want to do anything,” she said. “It’s important that I run. It shows other people that you can run 135 miles in two days — or five miles a day.”
Ashley Kumlien, whose mother was diagnosed with MS in 1980, started the nonprofit behind the race in 2009. According to the Wisconsin native, there are 14 runners this year, some doing back-to-back segments, who will be passing off their batons across the country. Aside from Griefer, two other runners in the race have MS. Last year, $175,000 was raised for the organization.
Kumlien said she was impressed with Griefer and accepted her application to be a runner after Griefer found out about the relay online.
“It’s important that Shannon is participating because she’s living with MS and she’s an endurance runner,” Kumlien said. “She’s had some ups and downs recently with her symptoms. On some level, this event will give individuals living with MS a purpose.”
Many of the runs Griefer has taken part in have benefited charities for sick and/or autistic children. She said that one of the reasons she chooses to take part is to give back and set an example for her three boys.
“You never know what someone is going through until you’re given a diagnosis,” she said. “I’m glad it’s me and not my kids, but MS is hereditary. There are so many ways to run races to help other people. My kids should give back. I instilled this in them. I want to help others who don’t have it as good as we do.”
She hopes they pick up another lesson, too.
“I want to show my kids that there will be obstacles and hurdles and tough times in life. Never give up. Keep fighting.”
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