Preparing for a bar or bat mitzvah is time consuming. A student in the throes of becoming a teenager has to learn Torah and haftarah portions, plus required prayers and blessings. Then there’s the speech, the mitzvah project and the weekly meetings with the cantor or rabbi, or both.
It’s a lot to sandwich between school and family life.
Now imagine preparing for such a momentous occasion while enduring the ongoing pain of juvenile rheumatoid arthritis.
Abby Ross, 13, had been struggling with aching joints since second grade, not long after she had a bout with chicken pox. And despite treatments that rendered her homebound for weeks at a time, Abby and her family were determined to not let her medical condition overshadow or get in the way of her ceremony last November at University Synagogue, a Reform congregation in Brentwood.
“When she sets her mind to it, she does it,” her father, Ed Ross, said.
When Abby was 8, her parents assumed she was lazy when she complained about the difficulty she had walking up stairs. Eventually, her knees hurt so much there were days she couldn’t walk. Her fingers began swelling, sometimes to the point that she couldn’t write. Although her fingers didn’t hurt as often as her knees, “when it hurt, it hurt bad,” Abby said.
A problem with Abby’s eyes led doctors to finally diagnose her condition.
At first, her parents thought she suffered from a recurring bout of pink eye. But a pediatric ophthalmologist found she had uveitis, an inflammation of the eye’s middle layer, which can lead to blindness and is associated with arthritis, among other conditions.
A rheumatologist diagnosed Abby with juvenile rheumatoid arthritis. Also know as juvenile idiomatic arthritis, this inflammatory disorder affects some 300,000 children in the United States.
Doctors put Abby on a drug used in chemotherapy, which left her fatigued and nauseous. She occasionally missed school for weeks at a time following the treatments, and her mother, Debbie, stayed home to care for her.
“Some days, I was like, ‘Why?’ when it was really bad pain,” Abby said. “Other days, it totally didn’t hurt.”
After more than four years, Abby switched from treatments at UCLA Medical Center and Childrens Hospital to having her parents give her injections at home.
“It became routine, but the first few times were tough,” Ed Ross said.
Abby studied more than an hour each night, five days a week in the nine months leading up to her bat mitzvah. She also wrote three speeches: one explaining her Torah portion, one detailing her haftarah and a personal speech reflecting how far she had come as a Jew and how she could be a better Jew in the future.
For University Synagogue’s community service requirement, Abby said it was a no-brainer: the Arthritis Foundation.
“I wanted to do something meaningful for me,” Abby said. “Throughout this process, I wanted everything to be equally important. If I did Heal the Bay like everyone else, it would’ve looked like it was something I had to do. I had motivation. I had pride. I wanted to do something that mattered to me.”
As a fourth-grader, Abby convinced most of the fourth- and fifth-grade class at Westwood Charter School to attend the annual Arthritis Walk. The next year, her fifth-grade class walked.
For her bat mitzvah project, Abby raised $1,500 for the foundation.
Her mother, Debbie Ross, said she has already started signing up people for this year’s walk at Emerson Middle School.
Rabbi Morley Feinstein said he was amazed by Abby’s growth as a Jew and her motivation to earn a Golden Kippah, taking on the extra work that included attending Shabbat services regularly and making amends with someone.
“When a child reaches out and helps someone else, they grow as a Jewish adult,” Feinstein said.
Abby and her family recently received word that her arthritis is in remission. Although it could return at any time — or never again — Abby said she doesn’t spend much time thinking about it. She’s busy living her life, and when it comes to her condition she keeps a practical outlook typically reserved for worldly adults.
“It’s kind of scary,” she said, “but I’m sort of, like, I’ve been through this before. It can’t be as bad.”