ElliptiGO rider Barbara Burke and her husband, Dan, bought an RV and planned to travel. But life had other plans. Barbara shares how exercise helped her gain self-confidence, and how she’s ridden thousands of miles on her GO while being a caretaker to her mother, daughter and granddaughters, and also facing her own health challenges. Now she’s ready to celebrate being exactly who she is.
Growing up, Barbara’s family moved a lot. Her father was an aerospace engineer, and they followed his various government contracting opportunities. They moved so often that Barbara attended 18 different schools before graduating from high school. Eventually, she and her husband, Dan, settled in Texas, and they thought it would be their forever home.
Barbara was a proud stay-at-home mom for many years, but she also had occasional part-time jobs and worked full-time after her daughter was in college. She calls herself a “jack of all trades” and notes that her favorite job was working as a ranch hand in Texas. Barbara explains, “I was out in nature, with horses. It was good exercise, and I was being paid for it!”
But after 15 years in Texas, they needed to be near family, and Barbara and Dan moved to Iowa to care for Barbara’s parents. Barbara helped care for them both, until her father passed away at the age of 101. She still helps take care of her mother.
The role of caretaker isn’t a new one for Barbara. Her daughter was born with severe allergies that could cause anaphylaxis, a potentially life-threatening reaction. Barbara taught herself and her daughter what to watch out for in order to avoid triggering her allergies. Barbara proudly notes that because of that self-education, her daughter has never experienced anaphylaxis.
Unfortunately, in adulthood Barbara’s daughter developed a rare autoimmune disease called Addison’s disease. Her adrenal glands don’t make the hormone cortisol. Cortisol helps the body to respond to stress, including injuries, illnesses and even emotions, both positive or negative. She can take synthetic cortisol and she has a medical response dog that alerts her when she needs to take the medication. “But we never know when she might need to be rushed to the hospital,” says Barbara. And so, Barbara and Dan’s daughter and two granddaughters now live with them.
Barbara is an advocate for Addison’s disease. She says, “Awareness and education are crucial for rare diseases.” And Barbara knows that very well, because she herself has a rare disease.
As a child, Barbara had en coup de sabre (ECDS), a rare form of localized scleroderma. Scleroderma is an autoimmune disorder that affects connective tissue and causes thickening and hardening of the skin and other tissue. ECDS can affect the head, face or both. Barbara was left with a scar on her forehead that appears like a discolored dent, as well as some bald spots on her head and a missing left eyebrow. She also recalls that she experienced some stiffness in her neck.
Children can be cruel, and young Barbara was teased. She wished she could hide her scars. She describes herself as being “incredibly shy” as a child.
Around 1982, she was introduced to weightlifting, and she loved it immediately. “Weightlifting and advocating for my daughter’s allergies built self-confidence and brought me out of my shell,” says Barbara.
Now she can’t imagine not exercising. She prefers working out alone, calling exercise her “meditation and stress relief.” Walking, resistance training, weightlifting and yard work are all ways she stays active.
One day, Barbara was walking on the High Trestle Trail in Iowa. She recalls, “I saw this really cool, weird bike go by, and I had the reaction that people now have when I ride by on my ElliptiGO.” She told herself she had to have one of those bikes. But when she saw the price, she put that dream on hold.
Then that neck stiffness she had experienced when she had ECDS as a child resurged. “Luckily, I have an awesome medical team,” Barbara says. Ultimately, she was diagnosed with cervical dystonia, a painful neurological disorder in which the muscles in the neck contract involuntarily. Barbara and her doctors believe that it’s possible the ECDS caused her dystonia.
Due to the dystonia, there was no way Barbara could ride a traditional bike. But she says the stars aligned and she finally was able to get an ElliptiGO bike, a red 8C.
Her first ride was on the High Trestle Trail bridge, the same place she had first seen an ElliptiGO bike. She was nervous and excited, so she took just a short two-mile ride. She loved it. “The ElliptiGO bike is actually good for my neck,” notes Barbara. “I’m standing, hopefully with good posture, looking ahead and around.”
She named her bike “Des ja GO.” Barbara explains, “I like the French language, and I translate that as, ‘For now, GO.’ Meaning, when I ride, that’s what I’m doing.”
But she does stop to answer questions. “ElliptiGOs attract attention, and you end up chatting with all sorts of people,” says Barbara. “Kids are especially interested in it. They ask if it has a motor, and I point at my heart and say, ‘There’s the motor.’”
That motor has powered Barbara and her Des ja GO to reach 7,000 miles. “It’s a milestone for me. A lot of those miles were on the trainer, indoors, because it’s a long winter in Iowa. And I did it with all of these challenges in my life, so I put it out there,” Barbara says, meaning that she posted reaching that goal on the ElliptiGO Facebook group. She felt that the mileage might have seemed paltry when compared to the riders who have racked up 10,000 miles or more, and she was pleasantly surprised when her fellow riders celebrated her accomplishment.
Barbara has also found inspiration on social media by following positive influencers like Paige Lauren Billiot, a model who proudly shares her port-wine stain birthmark. That made Barbara realize that she didn’t want to hide her ECDS scars anymore. “Now I want to decorate, to celebrate, instead of cover up,” she shares. “After all, I wouldn’t be the me I am without this.”
So she stopped penciling on a left eyebrow. She says that if people ask questions about it nicely, she gladly uses their curiosity as an opportunity for education. And if they don’t ask nicely?
“I just blow it off,” says Barbara. “If people don’t like it, too bad. We don’t have to comply with the beauty standards that are being shoved at us. Who says we have to wear makeup? Why should you have to cover your face up?”
Barbara is a passionate volunteer for the National Scleroderma Foundation, and she recently became a support group leader for localized scleroderma. The localized scleroderma group has members from across the country and even an international member. They meet on Zoom, and Barbara is working to find out what the members need and how they can best be supported.
As for her future goals, Barbara says, “My goal is to just keep GOing. And to just keep myself as healthy as I can.” She and Dan, whom she describes as her best friend, have their 47th wedding anniversary to look forward to.
She notes that each day is different. Caring for her mother, her adult child, her grandchildren and herself is a lot of responsibility. “Our plan was to travel, but life didn’t work out that way,” says Barbara. She says that yesterday when asked to describe her life in one word, she chose “complicated.” But today her word would be “RESILIENT.”
She says, “Yes, I get down sometimes. But I always get back up.” She vows, “Each day is different. Every day I will just do my best.”
Barbara, your best is truly great! Thank you for bringing awareness to scleroderma and Addison’s disease and for sharing your inspirational story with us. We know you’ll keep GOing! And we’ll keep celebrating you!
You can contact ElliptiGO with nominations to Rider of the Month or share your own story. It may just be the next feature!