By Edward Trentzsch
Loud pop music blasts down the hallway outside Taylor Bennett’s Chapel Hill apartment.
Bennett, 19, does not care about the numerous noise complaints she has received in the five months since moving in. Not one of her angry neighbors understands.
Inside the apartment, Bennett is soaked in sweat. She pushes her coffee table to one side of the living room transforming the diminutive space into a full-blown dance studio.
Bennett dances as if every movement could be her last. Her whole body shifts in fluid motion from the lightning-fast movements of her feet to the smile quickly spreading across her face.
As the music nears its grand finale, Bennett increases the intensity of her dance. She refuses to let the music leave her behind. Her rapid steps stand in stark contrast to the nightmare she lived through five years ago when she was diagnosed with a rare medical condition.
With the music still blaring, Bennett dances the night away on legs that remind her of both the past and present.
A passion for dance
Bennett grew up in Cornelius, NC, in a large house near Lake Norman. She poured her whole childhood into gymnastics until a friend invited her to a dance camp when she was 8.
Every camper wore bright costumes and danced with the type of freedom only a child could muster. Bennett became hooked.
After returning home, she quit gymnastics and never looked back.
“I had never danced before in my life, but I immediately fell in love with it,” Bennett said.
Dancing took on greater importance as Bennett grew older. At the age of 14, she averaged around 20 hours of practice each week.
One day while practicing for an upcoming competition, Bennett felt a sharp pain burning in the side of her neck while attempting a roll.
“It must just be some kind of muscle strain,” she thought. Certainly nothing to spend too much time worrying over.
Doctors ordered her into a neck brace as a precaution. Not one to be deterred, Bennett wore the neck brace at the dance competition where she competed in all of her routines despite the bulky constraints jutting out of her neck.
It was the last time she would dance for two years.
Bennett’s neck pain persisted throughout the next few days.
Her parents tried everything in hopes of relieving the mysterious stiffness, whether it was with heating pads, professional massages or muscle relaxers. Two weeks after returning to school, her arm went numb and turned a bright shade of purple. She could not move it.
“Honestly, I was like, ‘What the hell is going on?’,” Bennett said. “You don’t know what is happening, so I just brushed it off hoping my limbs would work again.”
The numbness in Bennett’s body bounced around between her arms and legs. Ignoring the issue was no longer an option.
The Bennett family visited doctors hoping to pinpoint what was happening to Taylor. She underwent nearly 50 tests looking to identify any rheumatoid diseases, three CT scans and multiple MRIs searching for brain tumors.
Still, nothing could be found.
“I think I lost 20 pounds over stress,” Julie Bennett, Taylor’s mom, said. “It was the scariest and most horrible thing we have ever been through.”
After three months, doctors diagnosed Bennett with Complex Regional Pain Syndrome, a rare limb pain developed after injury.
To cope with the stress of her neck injury, Bennett’s brain overreacted and shut down the rest of her body. CRPS affects fewer than 200,000 people in the United States per year and is not curable.
“It was hard not having control over my life”
Bennett spent most of the next year alternating between using a wheelchair and crutches.
She did not attend class for the remainder of eighth grade and endured physical therapy every day during the week. A few months ago, she had been jumping for joy on the dance floor. Now, she needed her mom’s help to brush her teeth.
“It was embarrassing,” Bennett said. “I couldn’t do anything on my own, and it was hard not having control over my life.”
Even after returning to school for her freshman year of high school, challenges remained.
When arriving in physics class, Bennett took her seat like she did every day. When the class ended and all her friends got up, Bennett remained. She could not move her legs, and her parents were called to bring her a wheelchair.
Bennett’s legs were both purple that day, but the only color she remembers is the red flush across her face as her friend helped her down the hall.
“She was at other people’s mercy and that definitely took a toll on her,” Madeleine Calcagno, a childhood friend of Bennett’s, said.
The cycles of immobility gradually grew better over time as Bennett’s body became more receptive to her medication. She entered remission at the end of her freshman year of high school and has not had a serious flare-up since the day in physics class.
When the disease first manifested two years ago, Bennett spent months waiting on a diagnosis while her body slipped away, making a difficult situation even worse.
Something needed to be done.
Determined to live life in motion
With the help of her family, Bennett started a nonprofit focused on giving families battling with CRPS a source of reliable information.
The nonprofit, CRPS Kids Foundation, raised $20,000 over three years.
When Taylor graduated high school, she decided to merge her nonprofit with Fight the Flame, another nonprofit in Charlotte raising awareness and money for CRPS. She sits on the company’s board of directors with her father.
“What I went through was really scary and I don’t want people to ever go through the same thing,” Bennett said.
Bennett is now a freshman at UNC-Chapel Hill hoping to major in business and journalism. She still loves to dance, and her past experiences have changed her into a person determined to live life in motion.
“I have no doubt she will find success in anything she takes on,” Lex Casciano, a college friend of Bennett’s, said.
As the music in her apartment fades away, Bennett takes a seat on her couch. She does not know if her legs will allow her to get back up. Either way, she will rise again.
Edited by Britney Nguyen