In raising awareness for the disease that changed her family’s life forever, five-time world champion lumberjack athlete
Shana Martin is Relentless
By Sarah DeRoo
Photographed by Chris Hynes and David Watkins
Hair and Makeup by Kendra Gassner
Standing in the shallow water near the Lake Wingra shoreline, Shana Martin is checking her watch. “About 43 seconds,” she says excitedly to a 15-year-old girl, who then gamely climbs back atop a floating log and begins rolling it beneath her feet. “Pick up your feet, pick up your feet. Keep them moving,” Martin calls quickly before the girl tumbles into the water. “Fifty-four seconds!” she cheers.
For Martin, a five-time world champion lumberjack athlete, fitness competitor, personal trainer, business owner, model and spokesperson, every second is a chance to keep moving.
Just days after taking second place at the Lumberjack World Championships in Hayward, Wis., Martin is back in Madison teaching classes through her business, Madison Log Rolling. Within the week she’ll be off to Connecticut to appear on ESPN, then out to Los Angeles for a national television show before heading home to lead fitness classes at Madison’s Supreme Health and Fitness, coach log rollers at the Lake Wingra Canoe and Sailing Center and compete in the final lumberjack competitions of the season.
It’s an exhausting schedule to keep, but there’s no rest for someone who may run out of time as a victim to Huntington’s Disease, the devastating genetic illness that affects 1 in 10,000 Americans, including her mom. The theory? If Huntington’s Disease wants to get her, it’s going to have to catch her.
Martin is 30. A milestone in the log rolling profession—and much has been made about her age. “ESPN ate that up last year,” she says, smiling. “They wrote this whole article about ‘the changing of the guard’ [in our sport]. It made me so angry! [laughs] But it’s true, I’m the second oldest competitor now.”
But turning 30 marked a quieter milestone for Martin. “I joke about [my age] all the time—that I feel old, that I need more time to recover between workouts. But the scary thing is…in general, the onset of Huntington’s Disease tends to happen about the same time it happened with your mom. My mom was around 30 when she started showing symptoms.”
Huntington’s Disease (HD), a rare and devastating brain disorder, slowly affects an individual’s ability to walk, talk and even reason. A genetic illness, it is passed through generations. Each child of an HD patient has a 50 percent chance of inheriting the gene. And every person who inherits the gene develops HD.
The disease hit Martin’s family as a shock; Debby, her mom, was adopted.
“During my birth, she had started moving around a bit, showing these irregular movements,” Martin says. “The most noticeable symptom of HD is called chorea, which is uncontrollable body movements where your arms are jerking, your legs are jerking, your face contorts. And the doctors noticed it.”
With no genetic testing available at the time, and no medical records from Debby’s birth parents, doctors were unsure what to make of the symptoms. When Martin was 5 years old, the family received an official diagnosis.
“We had been going through years of trying to figure out what was going on [with her],” Martin explains. “Finally [at the Mayo Clinic in Rochester, Minn.,] it was a combination of meeting with neurologists who agreed that her symptoms were HD—and finally finding her family records in what is called the HD Roster, a big roster of names of HD families.”
Together, Martin’s parents broke the news to their daughter.
“I remember being in our hotel room [in Rochester], and my dad set out a bunch of materials provided by the Huntington’s Disease Society of America (HDSA) about what HD is, what to expect and caregiving,” Martin says. “My parents sat down and explained to me exactly what to expect over the next several years.” Martin’s mom would begin to lose her ability to continue the activities of daily life.
“But they also showed me all the research that was happening,” Martin adds. “My dad said, ‘All these people are working really hard to make sure that your mom gets better.’”
Then her dad, George, a professor of forestry at the University of Wisconsin-Madison, flipped a coin.
“He said, ‘These are your chances of also having HD.’ My question was, well which one is it, heads or tails?” Martin says with a small laugh. “He said, ‘I can’t tell you that. But…he always went right back to: All this research is happening. He truly believed they would have a cure before it came to my time. Unfortunately they don’t yet.”
The Martin family headed home to Madison with their devastating news. “Right when we got back, my parents knew that I was going to have to become a caregiver to my mom,” Martin explains. “So they decided they were going to enroll me in a bunch of different sports…so that I could have my time to be with my friends and just live my life.”
Debby and George laid a YMCA of Dane County catalog in front of their daughter and told her to pick whatever her heart desired. “I picked swimming, gymnastics, log rolling and ballet,” she says. “And gymnastics and log rolling I stuck with and thrived on.”
The sad reality soon became that while Debby declined, Martin’s life was moving forward—and she was excelling. Sports became both her passion and her escape.
“[When] things at home were stressful, I would come to log rolling class and it would just be an hour of laughing,” she says. She poured herself into her sports.
Martin began traveling to log rolling competitions at a young age. By 16, she had won the amateur Lumberjack World Championships and was ready to compete as a pro. At Memorial High School, Martin joined the boys’ track team as the first female pole vaulter. She also became one of the first female pole vaulters at the UW-Madison, where she graduated with a degree in exercise science. At the age of 28, Martin won the Lumberjack World Championships in two sports—log rolling and the boom run—while competing with a torn ACL. Today, she can call herself a five-time world champion.
Debby was never able to see her daughter meet many of these goals in person.
“[When] I was 13, we had to put her in the nursing home,” Martin recalls. “That was probably the toughest year of our struggle because my dad and I had been caregivers as long as I can remember. All of a sudden our house was empty. And it felt like we lost.”
Both the stresses of managing Debby’s daily care that had filled Martin’s life—from helping her walk to the bathroom and dealing with anger fits common with HD patients due to their mental decline—to the fun times like singing along to Debby’s beloved folk music and traveling across the nation as a family, were done.
“My dad and I emotionally fell apart that year,” Martin says. “It was just a traumatic, awful, never-wish-it-on-my-worst-enemy year. My mom didn’t want to be [at the nursing home], and we didn’t want her to be there—but we could not protect her safety anymore. We were going to the emergency room about twice a week with her falling and cutting her head and things like that because she was so darn stubborn and independent, she wouldn’t wait for one of us to help her.”
Martin smiles when asked what her mom was like. “As far back as I can remember she was sick. But I do remember her stubbornness—I got that from her. She was extremely smart. Not super athletic, my dad says [laughs]. And she was absolutely beautiful.”
Martin pauses. “HD is the worst thing that can happen to a family. It slowly takes that person away from you. It’s long and painful and excruciating,” she says. “And much more than worrying about myself, I am upset about my mom. That’s what really angers me about this disease—that somebody so amazing had to go through all that…and that I was robbed of all those years with my mom.”
To cope with her frustration, Martin speaks out.
“When I was a kid, I didn’t talk about [HD],” Martin admits. “Kids made fun of me every day. At school they would call my mom a retard. [Because of the lack of reasoning skills as HD advances] my mom would come to my concerts or school plays and do something inappropriate like burp in the middle of it, or just be moving around the whole time because [of the chorea]. I literally came home crying almost every day.
“Until one day in sixth grade. We were given a research project and we got to pick our topic,” Martin says. “So I did a presentation on HD. I was so scared all the kids were going to laugh and tease me.”
The reaction she received was the opposite. “Afterward they just had so many questions. Nobody made fun of me,” she says. “I realized that all it takes is a little bit of education and awareness.”
As a teenager, Martin also found a network of support online and began attending the HDSA national conventions.
“There’s really not much else that relates to [HD]—to being at risk, to being young caregivers. We had all felt so alone. Thanks to the Internet and the conventions, we’ve found [each other]. And the feeling within the whole HD community is that half of us are going to get sick and get the disease, but the other half are always going to be there to support each other.”
Today, Martin is the group’s national spokeswoman, a role that plays to her strengths. Eternally optimistic and unflinchingly honest, Martin talks about the cause daily—and wears her blue HD awareness bracelet wherever she goes. “With awareness comes understanding, comes fundraising, comes treatment, comes a cure,” she says simply.
Despite her hectic schedule, Martin and her dad have a weekly tradition that they’ve carried on for the past 17 years. They head to Ingleside Nursing Home in Mount Horeb for a ‘family night’ with Debby.
The evenings typically follow a similar pattern: Nurses prepare Debby to head down the hall to the community room, where the threesome watches a movie. Sometimes they stick to documentaries, other times they analyze footage of Martin’s competitions while Debby fades in and out of sleep. “She can’t talk, she no longer makes eye contact. In fact, she’s at the very advanced stage of the disease where there’s no movement at all, you’re just completely rigid,” Martin says.
But on a recent week, George popped in a documentary on Woody Guthrie, a famous folk singer whose music Debby loved. “And her eyes popped open when the first song came on,” Martin says. “Normally, in the back of my mind, she’s not there anymore. But we knew for sure that she recognized the music. I cried. I was so glad to know that at least she’s still there.”
So Martin and her dad continue to visit. They both reminisce and talk about the future with Debby.
“My dad reminds me every single week what my priorities are,” Martin says. “There have been many weeks where I’ve called and said I cannot go to the nursing home this week. I’m losing my mind. I’ve got 732 e-mails to respond to. We’ve got a fundraiser this weekend and I have a competition the week after. And my dad will immediately get this tone of voice and say, ‘Shana, what are your priorities?’”
Martin laughs. “Then I feel really guilty, and I remember that my priority is my family,” she adds. “It’s been my dad that’s held us together.”
Martin says her dad is her rock. “He is the most important man in my life,” she says. “He’s the dorkiest man you’ll ever meet…but he’s a saint. My mom was his one true love and she always will be. He’s dedicated his life to her and to me.”
It’s that kind of dedication—a trait that must also run in her family—that Martin harnesses in her career.
As she leaves the nursing home each week where she witnesses the decline caused by HD, Martin adjusts to a life that keeps moving forward. There’s always a class to teach, a fundraiser to plan, and, of course, a competition to train for. “I’m going to keep competing until I’m 80—as long as I can walk,” she proclaims. And she means it.
Does she worry about her future?
“I talk about future stuff with people and this little voice in the back of my head says, ‘Well is that going to happen?’” she admits.
A genetic test was developed for HD in 1993. So far, like a majority of those at risk for HD, Martin has declined to be tested. Because there is no cure, most at risk individuals don’t want to know. The only thing to do is to wait.
“Early signs of the disease are something as simple as [twitching], tripping and falling or just general clumsiness,” Martin says. “[This] is really freaky for people at risk because you do stuff like that all the time.”
She stops for a moment. “[But] I’m not always worrying about it,” she assures. “For now, my decision is [to not get tested]. The next time that decision will come into play is if I ever get married, because then it’s no longer my decision. It’s a team decision then.”
But one thing Martin makes clear in any conversation about her life is how much she enjoys it. Her life is full of laughter. As she works with her Madison Log Rolling students or when she competes in any number of competitions each year, Martin’s smile is always present.
“There are so many things to be excited about and to look forward to,” she says. “That’s what my parents taught me. My mom always had a smile on her face. That’s how you have to live your life. And that’s why I’m so busy.
“As long as I can walk, and as long as HD doesn’t get me, then I will keep competing.”
•••
Join Martin for the Madison-Team Hope walk/run to benefit the Huntington’s Disease Society of America on September 26 at Elver Park. Find more information at hdsa.org/teamhope.