New Jersey Jewish News
MetroWest Feature
Local student spearheads illness-awareness program for teens
Two years ago, Rochelle “Rocky” Lipsky was an energetic and athletic young woman, a sophomore member of the
track team at Frisch Yeshiva High School in Teaneck.
One morning she awoke and found she could not get out of bed because of extreme pain in her joints. After visiting several doctors, she was diagnosed with pauciarticular JRA, a type of juvenile rheumatoid arthritis.
For the 16-year-old from West Orange, the physical pain of chronic illness has been only part of her ordeal. She also experienced what is often forgotten in the case of younger people: the social pain, including time lost at school and the simple pleasure of hanging out with friends.
“I missed about 40 percent of my sophomore year and 30 percent of my junior year because of it,” said Rocky, who is now a senior. Even when manifestations of the illness are less extreme, she still can miss two weeks of school at a time.
Perhaps worse, she suffered from the pity and ignorance of her classmates, some of whom believed JRA might be communicable. (Neither her sister, Miriam, 22, nor her brother, Michael, 20, has the condition.)
“People at school didn’t know how to treat me,” Rocky recalled. “There were countless times when I was running out of the [class]room upset that someone had made a comment about my disease.
“I told them, ‘I’m not evil; I’m not bad. Nothing’s wrong with me.’ So then you become very isolated.”
To help her classmates and other members of the community understand her condition, Rocky got busy. Working with Jewish Family Service of MetroWest, she applied for a grant from the Healthcare Foundation of New Jersey.
Her mother, Roz, a pediatrician, had worked on projects with JFS; her father, Marvin, is a gastroenterologist.
The result: a $15,000 grant that will be used to sponsor It’s FAB: For Teens, About Teens, By Teens. The program will take place Tuesday, May 9, at 7 p.m. at the West Orange High School and will feature presentations by three medical professionals — a pediatric endocrinologist from Saint Barnabas Medical Center, the director of hematology at Hackensack Medical Center, and the director of clinical rheumatology at Children’s Hospital in Philadelphia.
Three teens, including Rocky, will speak about their illness. “The evening will focus on what it’s like to live with a teenager with chronic illness and how you want to be part of everything but you can’t be, and what you need from friends and family members to make it an easier process,” she said.
Her particular form of the chronic disease is considered the most common and the mildest (the other two types — polyarticular and systemic — are characterized by fever and a light skin rash and may also affect such internal organs as the heart, liver, spleen, and lymph nodes).
That pauciarticular JRA is the “best” type to have and that there’s an 80 percent chance that Rocky will outgrow it haven’t made her life much easier. Twice a week, she has to give herself injections of enbrel, an immune suppressant.
As one learns quickly when speaking to her, Rocky lives up to her nickname. She’s neither shy nor embarrassed as she discusses her condition with a maturity that comes only from confronting a serious situation.
The determined student, the youngest in her senior class, drew on other resources to cope with her illness and her fellow students’ reactions. “I developed a sense of humor about it,” she said. “I could joke about it as much as anyone else can. I think that has been therapeutic.”
She credits her friends for sticking with her. “I’m the youngest in my grade, but they say I’m the oldest because of the arthritis.”
Rocky said some of her teachers were also “uncomfortable” around her. They meant well when they sought to make her life easier with extra-credit options during her lengthy absences, but she disdained special treatment. Her high school resume — laden with advanced placement classes, honor society memberships, and other extracurricular activities — reflects her perseverance and hard work. She will enter the University of Pennsylvania next fall.
The FAB program is about making students and teachers more aware of the challenges facing people like her.
“I want them to develop a better understanding of what it really entails when young people have to miss big moments in their lives,” Rocky said. “You can’t make them up…. No one wants to be pitied and nobody wants to be coddled or to receive that horrible sympathy glare.”
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