How This Local Marathoner Perseveres Through a Debilitating Disease

A local basketball coach and high-flying athlete faced her biggest test from her own nervous system.

Mary Merg has always been determined. After graduating from UW-Whitewater as its all-time leading scorer in women’s basketball, she went on to compete in marathons and half marathons. The 30-year-old earned a master’s degree in school counseling; she’s now a counselor and girls varsity basketball coach at Wauwatosa East High School. She’s even crossed more than 30 national parks off her bucket list. 

But in September 2019, Merg began a journey that would demand more perseverance than life had asked of her before. When she noticed a strange tingling sensation in her legs, she chalked it up to that day’s tough workout. But soon, her thighs burned and she couldn’t feel her feet. The sensation only worsened. “If I sat down for even a few minutes, blood would pool in my feet, and nothing helped relieve the burning feeling but ice,” she says. “It was constant agony, plus the exhaustion of no solutions or treatments.” By December, she’d moved in with her parents in Greendale. 

Another hit: She couldn’t work out anymore. On top of losing a crucial part of her identity as an athlete, Merg slipped into a depression and battled through an eating disorder. “Not being able to be active was really hard for me and my mental health, because fitness and my body have always been part of my identity,” she says.

Merg, shown above in her Tosa East counselor office; Photo by Sara Stathas

 

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Still, Merg continued showing up for her players through the pain, often soaking her feet and legs in ice baths at practices and games. Tom Oleniczak, a fellow Tosa East basketball coach who’s worked with Merg for the last four years, says she has missed only one girls basketball game during her health struggles. “There were times she’d walk in and I’d say, ‘What are you doing here?’ and she’d say, ‘This is what gets me through the day,’” Oleniczak says. “Basketball kept her focused on wanting to get better.”

In early 2020, a doctor told her she might never run again, and that there was likely no cure for what she was experiencing. Around that same time, Mayo Clinic accepted Merg as a patient, but she returned from a week of tests with no answers but some high-dose steroids to manage the inflammation. 

Merg crosses the finish line of the Ironman 70.3 Steelhead in Benton Harbor, Michigan last June; Photo courtesy of Mary Merg

Andrew Wenz, who worked as Merg’s assistant coach, was surprised when she showed up to coach a game the night she arrived back from Mayo. “I was pretty sure I’d be coaching that night, but she ended up coming against my advice and doing her job like nothing was wrong,” he says. 

Merg was just as tenacious in her fight for a diagnosis – she says she kept a detailed file with all the notes from her physicians and relentlessly scoured the internet for medical research that could point her toward a clue about what she’d been experiencing.

In May 2020, eight months after her first symptom, she saw her 18th doctor at Northwestern in Chicago, a neurologist who specializes in nerve disorders. The physician took one look at her file and immediately diagnosed her with a condition called small fiber neuropathy. Basically, the doctor told her, her immune system had damaged nerves, causing the pain. She could suffer from the condition for the rest of her life, but Merg was relieved to have a name for her symptoms. “It was a very surreal moment,” she says.

Now, Merg gets steroid infusions every other month to relieve the inflammation and help nerves grow. With the help of physical therapy, massage and acupuncture, she slowly started regaining strength. By October 2020, she could run for five minutes. Then, to everyone’s surprise, she signed up for a half Ironman triathlon. Last June, 16 months after a doctor told her she may never run again, she completed a back-to-back-to-back 1.2-mile swim, 56-mile cycling course and 13.1-mile half marathon in Michigan.

The victory of overcoming an obstacle was sweet, but Merg says the lessons she learned through the process were just as valuable. For one, she learned how to rest when she needed it – something that didn’t come easily to a competitive athlete. She also grew in empathy. “You really just don’t know what people are going through, whether mentally or physically,” she says. 

Merg’s dedication had an impact on her students, too. Olivia Close, a junior at Tosa East who’s been on Merg’s varsity team for three years, says her coach’s journey was a study in perseverance, a skill she’ll use in basketball and beyond. Says Close: “She taught me that even if you don’t know [if] things are going to get better, make the best of everything and take the small victories.”


 

This story is part of Milwaukee Magazine‘s January issue.

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