Babylon mom Jennifer Shea is still dancing despite MS diagnosis

Watching Jennifer Shea gracefully glide across the stage on tiptoe before balancing on one foot at Tanner Park in Copiague, it’s hard to imagine that just a decade ago she couldn’t even walk the few feet from her couch to the kitchen.

Shea, 42, of Babylon Village, spent much of her life studying Classical ballet and always longed to return to the art form as an adult. But a diagnosis of multiple sclerosis at age 31 left that dream a seeming impossibility.

This summer, with her health stabilized, Shea decided to take a grand leap back into her youth and into the ballet studio that first ignited her passion for dance.

Multiple sclerosis, known as MS, is a disease in which the immune system attacks the protective sheath that covers nerve fibers and can eventually cause permanent damage to the nerves. There is no cure.

The fact that Shea made it back to the stage is a testament to her will and also advances in treatments for MS, said Shea’s neurologist, Dr. Mark Gudesblatt. While every person can experience MS differently, according to the National Multiple Sclerosis Society, the most common symptoms include fatigue and mobility issues. The group says nearly 1 million people in the United States are living with MS.

“It’s been a hard road, and MS can be very, very unforgiving,” Shea said. “Ballet has just been the biggest blessing and gift anyone could have given me.”

The first spark

Shea was 10 years old when Classical ballet first lit a spark in her.

“You just have that feeling as a kid, of passion and fire,” she said, before turning to a famous saying: “‘Dance allows you to find yourself and lose yourself at the same time,’ and that was definitely true for me.”

Shea credits Lumiere Ballet in Bay Shore with bringing out “the best in me” as a young student of dance. She was so enamored with the art form that she would practice seven days a week and majored in dance when she started attending Hofstra University in Hempstead.

Shea eventually switched to a goal of teaching and became a reading specialist in the North Babylon school district, where she continues to work. Marriage and children soon followed, and like so many artistic endeavors, dance fell victim to life.

It was during this time that some of the possible first signs of the disease began to surface. But they were easily dismissed as collateral damage from a life spent pursuing an artistry that can leave brutal imprints on the body. That feeling of pins and needles under her arm? Probably just a pinched nerve, Shea told herself. That numbness in her toes? The years of pressure of her feet dancing en pointe, she thought.

“It would go away as quick as it would come on,” she said. “I thought, ‘Oh it’s nothing.’”

In 2012, Shea started experiencing vertigo. Then extreme fatigue set in.

By 2014, Shea said, her legs became so unsteady that she struggled to walk a few feet. After numerous scans and tests, she received an MS diagnosis in September of that year, just five months after the birth of her second daughter.

“I thought ‘Oh, OK, it’s MS, it’s not a brain tumor, this is great,’” she said. “I had not a clue what I was in for. All I knew is that I wasn’t going to die the next day.”

She started treatment, but said things got worse before they got better.

“My nerves were misfiring, and I felt like there were bugs crawling on my feet,” she said. “I was having tremors, and there was the numbness, the weakness, the fatigue, the stroke-like symptoms.”

Her health eventually stabilized thanks to monthly infusions of a medication called Tysabri, which can slow the progression of the disease and which Shea calls a “miracle drug” that helped ease her daily symptoms. But she still experiences unpredictable flare-ups with periods of extreme fatigue, headaches and unsteadiness on her feet.

Her two daughters, Danielle and Nicole, ages 11 and 14, and husband Steve, 46, also had to adjust to the disease.

“My kids would say, ‘Why does mom sleep so late or why is she going to the doctor so much?’” leaving her feeling guilty that she couldn’t make them lunch or see them off to school, she said.

Childhood studio

Shea’s daughters were taking ballet lessons at Lumiere Ballet, the same school she had attended, and a couple years ago, the allure of dance tugged at her heart again.

She began dabbling in a class here and there, her legs so weak they would shake, she said. But she pushed on and longed for something more. In July, she took a three-week intensive class, training three days a week, four to six hours a day, with the goal of a live performance.

Gudesblatt, her doctor, said he encouraged her to pursue her goal.

“It’s OK to fail, but it’s not OK to not try,” he said. “That’s the whole growth curve of, ‘What can I do with my disease or disorder?’ . . . In my mind she’s a hero, she’s awesome.”

The training has been as beneficial to her body as to her soul, Shea said, helping with her core strength and flexibility.

“When I would close my eyes over these last 10 years, I would sort of sway,” she said. “Now I can close my eyes and stand there without falling.”

Her instructor, Lumiere director Svetlana Caton, said Classical ballet requires “discipline at the highest level” as well as an innate love for the art form. When Shea returned after years away, she still had both of those characteristics, Caton said.

“She really surprised me,” the instructor said. “I wanted to do everything I could to put her back on the stage.”

The performance

Shea got her opportunity in August during Lumiere’s annual show at Tanner Park in Copiague, where she and other, mostly young, students performed scenes from the 19th century ballet “Paquita.”

“I was really worried,” Caton said, that Shea would lose her balance. “When you work in the studio is one thing, being onstage is another. But she pulled through and it was really wonderful.”

Her daughter Nicole agrees.

“I didn’t know she was going to be as good as she was,” she said of her mother, who gracefully outstretched her arms and precisely extended her legs from one end of the Tanner Park stage toward the other in a red, yellow and white costume.

Shea said she broke down in tears after the performance.

“It was defying the odds, in a sense,” she said. “There’s so much that goes into [performing], and the biggest things MS compromises are memory, cognitive function, balance — all of these things that you need for ballet.”

For Shea, returning to the stage last month was just the first step in resuming her ballet quest. She is continuing to take classes and hopes to perform in “The Nutcracker” with her daughter Danielle in December. She said she plans to “continue to go as far as I can with it” and hopes others take away from her story to always follow their passions, no matter the obstacles.

“It was the best thing I ever did,” Shea said. “I felt like I got a piece of myself back.”