‘Better Than Before:’ Congenital Brain Malformation Couldn’t Stop Young Skater
By Joanne Vassallo Jamrosz
Jennifer Jay finally has her layback spin back after 10 years. Chiari malformation took away most of this young adult skater’s basic skating moves, and kept her away from the sport she loves for a long time.
Jay, of Arlington, Virginia, first noticed Chiari symptoms at age 15. Diagnosis, however, did not come until she turned 26.
“Chiari is a congenital brain malformation, where the cerebral tonsils are herniated and disrupts the flow of cerebral spinal fluid,” Jay said.
Severe headaches are just one symptom of the disease. Jay experienced loss of balance, coordination, hearing loss and seizures.
She competed for 10 years while living in Florida and skated with coaches Irina Levitina and Maxim Frossin at the Pines Ice Arena in Pembroke Pines. She underwent brain surgery to correct the malformation and astounded her doctors when she went back on the ice just three months post op.
“Surgery gave me back my skating,” Jay said. “My PT [physical therapy] and OT [occupational therapy] post op quickly centered on skating goals, and within three months I was back on the ice and doing a layback spin for the first time in years. Skating brings me more joy now than ever before. I couldn’t ever possibly put it into words.”
Returning to competition by year’s end is one of her goals.
“When I was told I needed brain surgery, my only question was, ‘Does this mean I’ll be able to skate again?’” Jay said. “If the surgeon had said no, I don’t think I would have been able to have gone through with it. The first few weeks of recovery were rough, but after being discharged my therapy began focusing on what I would need to get back on the ice. Skating helped me make my therapy goals fun and attainable. I began tracking my progress and goals just as I did when I was growing up. It’s thrilling to measure my progress and recover and regain my old skills.”
Jay‘s other goal is to educate others about Chiari, a disease that is widely misunderstood and often overlooked.
“Chiari can be exacerbated by sports like figure skating,” Jay said. “I really hope this helps at least one person from becoming as symptomatic as me.”
Besides working on upcoming skating tests and programs, Jay spends her spare time traveling with a goal of skating on natural ice. Her most memorable skate happened on the third anniversary of her brain surgery. Jay visited Washington, D.C., just 15 minutes from her home, and skated on the reflecting pool between the Lincoln Memorial and Washington Monument.
“It wasn’t even ice anymore. It was slush,” Jay said. “The park police didn’t mind. They just said, ‘Don’t slice anyone.’”
That day on historic ice also served as her “Get Up” moment.
Read Jay’s full Get Up story in the May issue of SKATING magazine.