Long Island 'Curvy Girls' talk straight on scoliosis
A suit of armor. A boa constrictor holding its prey. A turtle shell. A medieval harness.
That's how nine young Long Islanders with scoliosis -- a condition that causes their spines to grow curved instead of straight -- describe the back braces they've been forced to wear in a new book called "Straight Talk With the Curvy Girls: Scoliosis -- Brace Yourself for What You Need to Know."
Tween and teen girls who have scoliosis wear braces for 16 to 23 hours a day for several years during middle and high school -- while sleeping, at school, at sleep-away camp, during extracurricular activities, on dates. The braces make them feel like football linebackers at a time when they'd rather look like head cheerleaders. The appliance is meant to stop their curves from advancing as they grow, but sometimes even when they comply with the edict they still wind up needing spinal surgery.
In "Straight Talk," the girls bare their souls in first-person essays about moving from dismay and wanting to "rip this thing off and burn it" to accepting their plight and, instead of trying to keep their braces secret, urging their friends to rap on their "abs of steel."
"When I was diagnosed, I felt like my body betrayed me. I didn't know anybody else who had scoliosis, so I felt totally alone," says one of the writers, Rachel Mulvaney of Mount Sinai, who began wearing a brace in fifth grade. She recalls people calling her "brace freak" and said kids didn't want to sit next to her because they mistakenly thought scoliosis was contagious.
Mulvaney, 19, is now a University of Rhode Island freshman and finished with treatment. She says she's hoping the book helps girls worldwide.
In addition to the nine memoirs, the girls' mothers wrote about what it's been like to deal with their daughters' emotional and physical issues. A second section offers fashion tips for brace wearers, and the last part is a question-and-answer section that addresses questions about the disease and lets scoliosis experts discuss cutting-edge treatment. The book was researched, compiled, edited and published by Theresa E. Mulvaney of Mount Sinai and social worker Robin Stoltz of Smithtown, both of whom have daughters with scoliosis. It came out this summer.
"I've been waiting for 35 years of practice to find a book as well organized and helpful as this," says Jim Dryden, an orthotist in the Los Angeles area who ordered 30 of the books to distribute to his patients and their families. An orthotist is the professional who measures girls and fabricates the braces. "I don't think there's anything that's been written that compares. This book is a major advancement in helping families assimilate all the information we throw at them as professionals."
Orthopedic spinal surgeon Laurence Mermelstein, who treats scoliosis patients at Long Island Spine Specialists in Commack, says the book offers tips girls can't get from a textbook or doctor's visit. "Simple things, like what type of clothes to wear if you're wearing a brace. That's something that's difficult for me to describe."
"Straight Talk" is for sale on curvygirlsscoliosis.com for $21.95. The book doesn't address boys with scoliosis because it's far more prevalent in girls. The ratio is 8-to-1, says Mermelstein. Doctors aren't sure why people get scoliosis. Genetic markers predispose some people, Mermelstein says, but "it's one of those medical mysteries."
THANKS TO NICKELODEON
The seed of the book began in 2009, when Leah Stoltz, then 17 and a senior at Smithtown High School West, was chosen by show host Nick Cannon for Nickelodeon's annual "TeenNick HALO Awards," a nationally televised program recognizing teens who contribute to their communities. HALO stands for "helping and leading others."
Cannon surprised Leah at her high school pep rally, pulling her from the bleachers to crown her while filmed by a crew. She was chosen because she had started a scoliosis support group for girls on Long Island called the Curvy Girls. During monthly meetings at the Stoltz home, girls sit in one room and parents another. The camaraderie and exchange of information is invaluable, participants say. The publicity generated from the broadcast spurred other girls with scoliosis to contact Leah, asking how they could start support groups.
In the four years since, Curvy Girls has mushroomed to 51 groups in 36 states and four countries, including Brazil and Australia. Leah and Robin Stoltz have Skyped with the Brazilians, and they traveled to Connecticut when Jamiah Bennett of Milford, now 16, started her chapter in 2011 to connect with others who, like her, faced treatment. "My sister was so excited," Jamiah says of her younger sibling, Asha. "She saw Leah on the HALO Awards and she was so excited because 'someone famous was coming.'"
The group has established the Curvy Girls International Convention, which drew 150 girls and parents to its first event in Hauppauge in 2012. The Curvy Girls expect more than 200 girls and parents at the second convention in June in Hauppauge.
Says Cannon in an email: "It's amazing how Leah's story continues to inspire others to create positive changes in their communities."
'GROUP IN A BOOK'
Next, Leah's mom and Rachel's mom decided to write a guidebook for parents and girls as a resource when they are diagnosed. "I would see parents looking for help. They come in not knowing anything," Mulvaney says.
Says Robin Stoltz: "We said, 'We really need to put all the information together so families who are not close enough to a support group would have a support group in a book.'"
The moms say they wanted the original nine Curvy Girls to tell their stories, and they wanted the stories to be honest.
Leah, who wore her brace but still wound up having surgery that left two titanium rods and 22 screws in her back, confesses in her essay to her sometimes bad behavior. "Having to wear a plastic encasement for hours on end, with no end in sight, felt like the end of the world to a 12-year-old," Leah writes. She describes taking her brace off during school a few times without her parents knowing, and to having to literally be pulled from her bed and shoved into the car by her dad when she refused to go willingly to a doctor's appointment.
"I know if I had known that I wasn't the only one reacting in this way to everything going on, it would've been a little bit easier," says Leah, now a senior at American University in Washington, D.C., studying sports entertainment business.
The book does make things easier, says Elizabeth Ocello, 11, of Commack, who was diagnosed with scoliosis in April and sometimes feels angry about what she faces. She's met some of the writers at the Long Island Curvy Girls meetings, and she's made new friends through the gatherings, such as Morgan Pozolante, 12, of Lynbrook. Says Elizabeth: "They have the same stories as you." Says Elizabeth's mom, Gina: "If I had the book at first, I probably wouldn't have made the mistakes I made medically. Knowledge is power."