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NC athlete with cerebral palsy doesn’t need easy. She just needs things to be possible

News & Observer - 10/15/2023

Michelle Ballasiotes was in the womb when she heard her first “no.”

In an ultrasound, doctors found a brain abnormality – hydrocephalus, the buildup of fluid in the brain. Doctors recommended to her mother, Mary Kay, that her pregnancy be terminated. Her mother said “no.”

After Ballasiotes was born, doctors realized she had had a stroke in the womb. An exploding blood vessel in her head left a hole in her brain. It also prevented any further growth in the area, leaving her with life-long limited fine-motor skills.

At 3 years old, she was diagnosed with hemiplegic cerebral palsy (CP) in the right side of her body. Now an adult, Ballasiotes can get frustrated by the paralysis in her right hand and leg, though she considers herself lucky it is contained to one side of her body and that the stroke left her with few cognitive limitations.

“I get frustrated because I do feel more limited because of my disability, and I’m still trying to figure out how I can work around it,” said Ballasiotes, now 25 years old.

Limited by her paralysis, she deals with a weak grip, frequent blisters on her foot, and the lack of consideration she and others with disabilities face from society every day.

But Ballasiotes grins and moves on. Literally.

She rides cyclocross, a competitive-cross between mountain and road biking. It’s how she stays active and keeps her joints healthy. And she skids past societal expectations for those who have disabilities, whether it’s taking action in races, or directly creating more accessibility for others with a disability in sports and otherwise.

“You got to be out there, like being active, you can’t just sit on your booty all day,” Ballasiotes said.

Ballasiotes’ dark curls, wide-eyed glasses and lilt in her step paint the character of just another public health employee in the Triangle workforce. The consistent 70-degree bend in Ballasiotes’ right wrist, or the shrunken height and width difference of her right leg go unnoticed to most — though not all — in her job as a children’s occupational therapist (OT) in Cary.

“I’ve got people with a variety of physical disabilities. One of them is more cognitively affected, and she just knows, so she always points at my hand and goes ‘CP too!’” Ballasiotes said. “So it’s a bond with them, in the fact that I also have CP.”

In her job, those children struggle with the same physical, emotional and societal limitations she did growing up.

“It’s great working with kids – it can get tiresome – but she is just always a ball of positive energy,” said Lauren Ford, Ballasiotes’ coworker at Pediatric Therapy Associates. “It’s always great to have someone like that to work alongside.”

Helping children like herself

Being a pediatric OT wasn’t Ballasiotes’ first choice. After graduating from UNC-Chapel Hill’s Master’s in Public Health program, Ballasiotes wanted a position in a hospital. However, she couldn’t wear her wrist brace in the building due to infection risks, and there wouldn’t always be someone to help her when transferring individuals inside the hospital.

“It was just — it was really disheartening,” Ballasiotes said.

Despite the setback, Ballasiotes picked up pediatric practice naturally.

“She really cares about her patients and she will go quite literally the extra mile for them,” Ford said. “She’s even started doing aquatic therapy for them on Fridays, and we don’t typically work on Friday.”

Ballasiotes creates safe spaces for her clients because she knows first-hand those places aren’t always there for those with a disability.

As a child, she was frustrated and experienced emotional turbulence because of her disability and the lack of resources available. Most of the children she sees deal with the same problems.

With the barriers in healthcare, infrastructure and education, Ballasiotes also remembers every other facet of society working against her.

Ballasiotes recalls a childhood memory of her first attempt at riding a tricycle in Augusta, Georgia. She remembers the lack of desire to try to ride her “clunky” bike around with her friends. Even her first time on a bike at 5 years old ended with a face-plant at a basketball court neighboring her house in Chicago.

But now, the wheels are in her hands. Literally.

It wasn’t until she was 19 that she hopped on a recumbent bike for the first time, and hasn’t looked back.

How cyclocross works

Imagine a tricycle, but lay the pedals out in-front of the seat in a reclined position. A recumbent bike is made up of two large wheels in the back, and a small one in front. It’s a bit of a hassle to climb in and out of the device, but once Ballasiotes is in, she’s speeding ahead.

And speeding into the cyclocross race season.

“We don’t want them just to put a podium there for us ‘just because,’” Ballasiotes said. “Just because we ride a different bike doesn’t mean we’re not athletic.”

Raven Rock Ramble was the first bike race she competed in two years ago. That’s how she connected with many members of the current adapted athletes organization, North Carolina Adapted Sports (NCAS), an organization of which Ballasiotes is also a board member.

Ballasiotes met her coach Stephen Knight while training for her first bike race in 2021.

Knight was stunned upon learning Ballasiotes was training for a 30-mile bike race after having her bike for only a few months, and he expected a slower finish.

“I just laughed,” Knight said.

But he said that Ballasiotes aced the competition and exceeded all expectations, even her own, which consequently launched her into cycling and a regiment of weekly movement.

Monday, rest; Tuesday, pickleball, Wednesday, cyclocross; Thursday, climbing; Friday, aquatic fitness.

Knight looks forward to coaching her into newer and more difficult races; Ballasiotes looks forward to the long road of training for international cyclocross. Knight finds greater value in her spreading the lessons she’s grown from in her athletic recreation.

“I just want her to pass along what’s what I gave to her and provide the opportunity for someone else to have the same enjoyment that she’s having,” Knight said. “That’s my motivation to coach.”

Making Lake Crabtree Park accessible

Ballasiotes use free weekends for trips out to Lake Crabtree Park to keep training.

The park, which she and other NCAS athletes frequent together, is now about 80% accessible to adapted and recumbent bikes. Thanks to a project started and executed by NCAS, the trails are now widened and restored.

“‘Accessible,’ meaning I can get through it on my bike,” said Wes Hall, founder and CEO of NCAS. “But does that mean it’s easy? No, it’s still difficult, it’s still going to be a challenge.”

Hall is a para-athlete who also rides a recumbent bike. He was also the gearhead who adapted Ballasiotes’ bike to her shorter leg. For the four years Hall and Ballasiotes have known each other, they’ve enjoyed competing and practicing on trails and along climbing walls.

“She’ll school me on the climbs, but I’ll crush her on the downhills every time,” Hall said with a grin.

Hall asked her to join as a board member for NCAS about a year ago. Ballasiotes said yes, excited at the prospect of becoming Hall’s “boss.” She was, of course, also looking forward to more time on the trails, and recruiting athletes of all generations to join in on the fun.

Though Ballasiotes’ experimentation between various sports growing up never thrust her into any long-term athletic community or surefire Paralympic race, she was always willing to keep adapting and keeping an open mind about new ways to keep active.

Today, it’s her recumbent bike and NCAS team. In the past it was the support of her family and the adaptations they made to help her succeed.

Time out of their day to see doctors and therapists, even finding the right ones, energy spent making tools or helping her ease the pain of blisters or sore joints whenever the need arose.

“I’ve talked to a lot of parents (of stroke survivors) and they all worry about what the future is – but for some reason, I was just focused on the here and now and helping her in the best way we could,” said Mary Kay Ballasiotes, Michelle’s mother.

There are days Ballasiotes takes timid turns around trail corners, then there are days she flies on her bike, up and down the steepest of hills. Though sometimes she hesitates, her leg tells her no, her mind tells her no, she’s always pushing herself to move in more exciting ways.

“Movement is life,” May Kay said. “I mean, it just is.”

For more information about pediatric strokes, visit the American Heart Association website.

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