NEW YORK (JTA) — Roni Bibring was 15 when she was diagnosed with leukemia. Four years later, her treatment completed, she says her biggest challenge — having lost touch with many of her friends — is making new friends who understand what she’s been through.
“Most people don’t even realize that they’ve completely lost touch with you and that’s the thing you need the most,” said Bibring, of Englewood, N.J. “They think because you don’t text them every day that you don’t want them in your life, but you might not even be conscious,” adding that “You could be asleep for days in a row.”
Through R-Mission, a support network for Jewish cancer survivors that held its inaugural event in New York last month, Bibring is finding people who do understand.
“I have a lot of scars, and they would never judge me for it because they probably have similar things on their body, too,” said Bibring, who is featured on the group’s website. “Just not having to be judged and to have friends that understand why you look a certain way is the best part.”
Cheryl Greenberger said her work as a psychologist at Chai Lifeline, which provides support and a camp for Jewish children with life-threatening illnesses, spurred her to create R-Mission — as in remission — as a Chai Lifeline program.
“What people were asking for and looking for was a way to connect with other people who could relate to them and understand them in a way that even close family members and close friends couldn’t relate to them,” Greenberger said.
The group’s website, r-mission.org, includes a discussion forum open only to those who have registered, as well as a resource section with links to everything from cancer research foundations to support groups to organizations that give scholarships to young people who have had cancer.
Although events will be held in New York, Greenberg points out that the discussion forum can reach a global audience. More than 100 people already have registered, many of them from outside the United States.
An online community, she says, gives “people the opportunity to really be open and honest with the questions they had without publicly announcing themselves.”
Bibring says she is glad to meet people who have had experiences similar to hers.
“All of us went through the same thing,” she said. “They understand what you are going through and they are not going to ditch you. They are there for you when you aren’t feeling well.”
Melanie Kwestel, Chai Lifeline’s director of communications, anticipates that R-Mission will draw its initial members from Chai Lifeline. But she says the goal “is to reach people of all types of cancer beyond just pediatric cancer, and with online advertising we can reach a bigger audience.”
For now, the majority of those involved in R-Mission are Orthodox, but through online advertising and word of mouth, officials hope to reach Jews across the denominations.
David Pelcovitz, a professor of psychology and education at Yeshiva University’s Azrieli Graduate School and a member of the R-Mission advisory committee, said a stigma long surrounded cancer. In Yiddish, cancer was referred to as “yenem machla,” an affliction from the other world.
“It was almost too dread a reality to even face and name,” Pelcovitz said. “We’ve come a long way since then, and this is another example of being able to openly discuss, openly support, and to openly name the monster.”
The stigma, however, remains and it is most prevalent in the Orthodox community, Kwestel said, pointing in particular to a culture in which matchmakers are common. Before the couples meet, they learn much about one another’s background.
“There are people who aren’t going to date someone who had cancer, but it’s just not acceptable in the non-Orthodox community to say that,” Kwestel said.
Unlike Sharsheret, a nonprofit founded a decade ago to focus on young Jewish women who have or were treated for breast and ovarian cancer, R-Mission is the first Jewish organization dedicated to connecting Jewish survivors with all types of cancer, according to Greenberger.
Kwestel says that many who have survived cancer are seeking a sense of community.
“Sometimes people say I’m not religious, I don’t do Shabbos, I don’t do kosher but I’m Jewish,” she said. “There’s still this feeling of affiliation and there is a feeling that in any kind of traumatic situation, we look back to our families and community.”
Bibring says that she is excited that R-Mission has been working closely with survivors to ascertain their needs.
“It’s like we are building our own organization by the means that we have. I think it’s awesome; it’s the best thing you can ask for,” she said. “Different people have different needs, so it’s nice that they are asking us.”
Greenberger wants R-Mission to be a program “for survivors by survivors.”
“I hope that we will develop a strong community where no one will feel alone anymore when they complete treatment, and that people will feel like there is a place they can go where people understand them,” she said. “We really want to empower survivors.”