Young woman with cerebral palsy connects with others on a global scale

Teen blog leads to website and in-person meetings for better understanding.

Katy Fetters, who has cerebral palsy, is launching a campaign through her blog and website to help others with similar challenges. She walks on the Huntington Beach pier in Huntington Beach, CA on Wednesday, March 20, 2019. Paul Bersebach, Orange County Register SCNG

By David Whiting, Orange County Register March 20, 2019

If you’re a long-time reader, you may recall a young woman from seven years ago with cerebral palsy who dragged her foot yet managed to run like the wind when it came to helping others.

Well, look out world.

Katy Fetters has continued to bloom, will soon receive a master’s degree in media and public engagement from the University of Colorado Boulder and this weekend leverages her long-time cerebral palsy blog into a global campaign to help others with similar challenges.

“This is no pity party,” Fetters points out. “I want to re-articulate how disabilities are perceived. We need to give power back to people with disabilities.”

If Fetters’ mission sounds like an impossible dream, then you haven’t come face to face with this woman who drove with her boyfriend from the top of South America to the bottom, trekked the jungles of Columbia, hiked the Andes.

Heck, now 26 years old, she even stands two inches taller than when we first met at Soka University.

Armed with a new leg brace that goes from her foot to her thigh, Fetters bounds up stairs — something that seemed unlikely back when Fetters was in college.

You see, when doubters doubt, Fetters only sees possibilities. Appropriately, Fetters calls her mission, “Cerebral Palsy Strong.”

Katy Fetters, who has cerebral palsy, is launching a campaign through her blog and website to help others with similar challenges. She is at the Huntington Beach pier in Huntington Beach, CA on Wednesday, March 20, 2019. Paul Bersebach, Orange County Register SCNG

Struggling to crawl
Fetters and her twin sister, Sara, were born at 27 weeks. They each weighed about two pounds. Sara was OK. But Katy was different.

Doctors said she’d never walk, never talk. But they didn’t know Fetters and they didn’t know the Fetters family.

Fetters’ mother, Carolyn, was a rower at UCLA where she happened to study cerebral palsy. Her father, Paul, moved from Michigan to California to become a bodybuilder and went on to found The Training Spot gyms in Huntington Beach.

Still, doctors were right about one thing. Baby Katy never learned to crawl — at least not the way most babies do. Instead, Fetters made her way on her belly, pushing with her tiny legs, pulling with her tiny arms.

Later, she learned to skateboard on her stomach. It took her three years to learn to ride a bicycle, but ride she did.

Still, every day offered, and continues to offer, new challenges. Years ago, doctors operated on her left leg to lengthen a tendon. Next, a series of casts stretched her ankle. Then, she had to wear a brace on her leg every night — and still does.

To the outside world, it may have seemed that the only thing holding her together was perseverance. But when you grow up playing soccer with a leg that barely moves, join the cross-country team with a body that won’t cooperate, build a blog sharing your struggles, there’s something more.

Call it giving.

Simply put, Fetters chooses not to accept limitations for herself or for others like her.

Her teen blog, for example, saw 20,000 page views a month. Still, Fetters envisions a far wider reach with her new website and plans to combine social networking with in-person community building.

“Topics like shoes, dating, physical activity and high school,” Fetters explains, “gave way to a deeper understanding of what it’s like to enter into adulthood with a disability.”

During a wide-ranging conversation, Fetters shares that more than 50 people with cerebral palsy from around the nation will come together this weekend (it’s also Cerebral Palsy Awareness Month) to help shape the future of Cerebral Palsy Strong, also known as #cpstrong.

“I want to provide us all with the opportunity to meet one another, to feel understood, be seen and heard by those around us,” Fetters explains. “We often feel a bit lonely and largely misunderstood by our peers and even the medical community.

“I believe this is our chance to come face to face and to collectively work on building a vehicle of support for ourselves.”

Exosym newbie tips, June 19, 2018. Katy Fetters, Cerebral Palsy Strong

Life-changing device
No matter who you are, life is rarely linear and that certainly is true for people who face what many simply call CP.

A one-paragraph primer: Cerebral palsy is a non-progressive disorder caused by damaged motor control centers. It can occur during pregnancy and through age 3. Premature infants are especially vulnerable.

Fetters calls her condition mild. She explains that her brain has a difficult time connecting with the left side of her body. Unfortunately, there is no known cure.

“You make the best of it,” she says, “by working your butt off in the gym.”

Some days, however, are particularly tough.

Two years ago Fetters wrote in her blog, “Lately, I’ve felt pretty down about my body and all the lovely things cerebral palsy likes to remind me of — my squished toes, my crooked feet, my slow legs.

“CP seems to add an ‘extra’ to everything. It’s been stirring up a lot of negative emotions toward myself,” she confessed. “It is exhausting to be looked at every time I walk home or get onto the city bus.”

Fetters allows that one of the most difficult things about having a disability is fear of being injured. She confesses, “It was part of my identity.”

But that was then. This is now.

A relatively new device that is part orthotic, part prosthetic called an ExoSym has changed her life.

Only weeks after strapping on her carbon fiber, custom-made ExoSym two years ago, Fetters walked into the steamy Colombian jungle for a 28-mile, three-day trek to explore La Cuidad Perdida, a legendary “lost city.”

At first she felt invulnerable, performing what seemed like a miracle simply by keeping up with fellow hikers. But after a full day of trekking, muscles that had never been, well, muscles gave up.

Reluctantly, Fetters agreed to ride a donkey part-way. But when it came time to ascend the final 1,200 stone steps to La Cuidad Perdida, she was determined to try climbing on her own — and triumphed.

“My legs were shaking,” Fetters recalls, “but I was so incredibly happy to be there.

“My ExoSym may not have immediately gifted me with the athleticism I have so deeply hoped for all my life,” she reports, “but it did give me the lost city, and much more.

“Without this device, I would not have the confidence to go out in our world.”

Don’t misunderstand — Fetters is not a paid spokeswoman. But she is a fan.

“I’ve referred a dozen or so people with CP to Hanger Clinic,” says Fetters, who paid for her $11,000 brace with her own money and the assistance of a GoFundMe campaign. “That’s something I feel most proud of, mostly because (it) helped improve another’s quality of life.”

“I only wish this could’ve happened sooner.”

Jumping hurdles
Through it all, Fetters remains a determined optimist.

She doesn’t expect to ever be able to wiggle her toes, but she does hope for future strength.

“I’m still figuring out what this brace will do for me in the next five years,” Fetters says. “No one knows.”

After she tackles a series of stairs next to the Huntington Beach Pier, she explains, “I don’t present myself as a disabled person, but I do own the term ‘disability.’”

It’s a different way of confronting barriers which, for someone like Fetters, are just something to climb over.

David Whiting is the award-winning Metro Columnist at The Orange County Register. He also can be heard on radio, has served as a television news anchor and speaks frequently at organizations and universities. He previously was an assistant managing editor and has received Columbia University’s Race and Ethnicity Award, National Headliner awards and Sigma Delta Chi’s Public Service Award. He recently was invited to participate in an exchange program with Chinese journalists. He earned his undergraduate degree from the University of Michigan and his master’s from Columbia University’s Graduate School for Journalism. He is a two-time Ironman, a two-time Boston marathoner and has climbed the highest mountains in Africa and North and South America. Follow David Whiting on Twitter

Source Orange County Register

Also see
Whiting: Student with cerebral palsy blogs for teens in Orange County Register
Exosym newbie tips in Cerebral Palsy Strong
How physical therapy helped me achieve my goals in University of Colorado Boulder

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