Couple inspires others with disabilities

Jana and Tom Gierke near the finish line of an event in Door County.

Tom and Jana Gierke seem to be having the time of their lives competing together in running, swimming, and biking events.

At first glance, that might be the last thing people would think this married couple is doing.

Tom, 48, has been a functional quadriplegic from birth and is largely confined to a wheelchair. Jana lost her right leg from above the knee when she was an infant because of a blood clot.

Neither factor has slowed these two down, nor has it diminished the smiles on their faces whether they are competing in an event or talking about their involvement with a group known as myTEAM TRIUMPH (MTT) Wisconsin.

Afraid of disabled persons

Jana said a lot of people are afraid of people with disabilities. Even Tom, a native of Kiel, said there was a time when he was uncomfortable being around people with disabilities. “I was sheltered from stuff,” he said.

But Tom added, “I was never brought up thinking about disabilities.” He said his father, Norman, urged him to never say he could not do something. “You’ve got to use all those things to your benefit,” Tom said.

Tom and Jana are planning to be present at Road America near Elkhart Lake this Saturday, Oct. 31 as Road America and myTEAM TRIUMPH Wisconsin are teaming up to host the Road America Classic—a four-mile walk-run to benefit myTEAM TRIUMPH Wisconsin which supports athletes with disabilities in Wisconsin.

Tom recently said he is not sure if he will participate in the walk-run as he may serve more as an ambassador of myTEAM TRIUMPH for this event which is so close to his hometown.

Live in Menasha now

The couple moved to Menasha from Kiel about five years ago to be closer to the Fox Cities medical specialists which Tom has to see. On a recent trip back to Kiel they reminisced about their time here and their ties to the area. Tom’s mother Carol still lives at Cedar Lake although his father passed away in the early 2000s.

Tom said he could walk for a while as a child but his condition affected him from his knees down and his elbows out. “I used to fall a lot,” he said. He added that doctors seemed to push him into a wheelchair, whereas today the focus would have been more on therapy and his outcome might have been different. Tom continues to undergo therapy to this day, although it has been interrupted by the pandemic.

Tom went to college for mechanical engineering and worked at H.G. Weber in Kiel for a number of years helping to design paper bag making machines. He later worked on refrigeration equipment at Stoelting in Kiel for a number of years and was involved at Kiel Alliance Church while living in this area.

Tom later worked part time for the Wisconsin Department of Natural Resources as a communications specialist. He said it was around that time that he finally started to embrace his disability as a gift. He became the executive director of an advocacy group based in Sheboygan, and in 2007 got an Advocate of the Year Award from the State of Wisconsin.

Employed full time

Tom said he took a part-time job with a program which had been providing him assistance. That job turned into a full-time job, which meant Tom had to go off financial assistance for his disability.

Working for a state program, Tom has a case load of people with a range of developmental disabilities. He works to keep them in their communities.

As for being a person with disabilities helping others with disabilities, Tom said, “It makes my job very unique.” He said it encourages and inspires the people he works with to do more. “We don’t really look at our disabilities,” he said. Jana added, “They’re assets—I can park in handicapped parking.”

He and Jana met on eHarmony and were married 13 years ago. It is the second marriage for both of them.

Finding MTT

Shortly after they were married, the couple happened upon information about myTEAM TRIUMPH. When they moved to Menasha, they discovered there was a Fox Cities chapter. Jana had been a competitive swimmer and was active in other things while growing up in Michigan, including gymnastics, skiing, and 4-H.

Tom and Jana get help when they participate in their various events. The people who help them are called “angels,” while the people with disabilities are their “captains.” Tom added, “You don’t have to be athletic to be an angel. You just have to show up.”

One of their angels has been son Zane (from Jana’s first marriage), who is almost 18 years old and a high school senior. Zane—who attended grade school at Zielanis Elementary School in Kiel—is finishing up his certified nursing assistant degree and is in an emergency medical technician course at Fox Valley Technical College. Jana said he hopes to become a paramedic or fireman.

Zane often serves as the bicyclist pulling Tom in a special race chair. Zane and other angels have helped Tom and Jana bike 56 miles, run a half marathon (13.1 miles), and do swims with Tom in a raft.

Tom recalled a time when Jana was swimming in an event and observers were saying, “She’s not using her legs to swim!” Tom said he yelled, “She’s only got one leg!”

But crowds also have screamed and applauded when Jana leaves the water and people see she has only one leg.

Jana sometimes rides in a race chair but also sometimes gets out and does her best using a crutch. While Tom rides in a chair, he said the events are also taxing on his body as there is constant moving, bouncing, turning—and heat. During a half marathon one time, angels were putting ice down his shirt to try to keep him cool. “You have to be in some sort of shape just sitting in the chair,” he said.

The couple does regular training runs with angels in Menasha. They also assist the MTT organization. Tom said he has always been “the planner and the fixer” and he serves on the MTT Board of Directors. “So I’m still a planner,” he said.

Presence at Road America

MTT was represented at the Road America 12-Hour event held on a hot weekend in late August. “It was just a super successful event,” Tom said, pointing out that people from all over the country were in attendance. He and Zane did 20 miles of bicycling that day, sometimes hitting 30 mph on the down slopes. “It was an amazing experience.” It also was the first time they camped as a family, with angels nearby to assist them if needed.

In a normal year the couple would participate in about three events per month. “We have several shoeboxes of medals,” Tom said. Jana has done a full marathon. There are MTT programs in other states so they could someday choose to travel to events in those places, with entry fees in all events covered by MTT.

“We love to meet new people,” Jana said. “I love the noise and the people. I’ve had little kids come up to me.” The couple has appeared on Good Day Wisconsin and, at a 5K in the Fox Cities, a little girl told Jana she had seen her on TV and felt like she was meeting a celebrity. Jana said she will sometimes plop on the ground to talk with children.

Their participation with MTT as well as Tom’s work experiences have helped him come out of his former shell. “I’ve changed so much since high school,” he said. “I was so quiet. I just sat in the background. That’s how I grew up.”

He had a lot of surgeries growing up and spent a lot of time recovering. “I got picked on a lot in high school and in grade school. That’s probaby what sent me into my hole.”

Coming out of his shell

Jana confirmed that Tom has changed quite a bit in just the last five years; in fact, the couple has done speaking engagements in local schools about overcoming disabilities and stopping bullying. “It’s just fun being able to do that sort of stuff,” Tom said, adding that they plan to resume once the pandemic is over.

Accompanied by Tom’s service dog Tamali, a yellow lab, the couple remains very active. Jana is on the list to get a service dog as well. “It’s kind of a real bridge between a person with a disability,” Tom said of service dogs.

Tom gets around in his specially equipped van, including sometimes driving to his workplace’s home office in Madison. He primarily works at home these days but has traveled to meet clients from Brillion to Neenah to Green Bay. “I don’t know where we fit myTEAM TRIUMPH in,” he said, but added he is glad they do “or else I’d just be working, working, working.”

The couple said they would love to see a Lakeshore MTT chapter open for the Sheboygan/Manitowoc area. They said they know well the benefits the organization has for people with disabilities.

“It’s cool to see the community involvement,” Tom said. “That’s what it’s about—getting people out and still being safe. It’s so cool to see people come out of their shells.”

Just like Tom Gierke has done.

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