Advocating for Women’s Health from the Women’s Health Symposium
REMARKS BY ROCHELLE L. SHORETZ
CHICAGO – JUNE 1, 2003 Thank you very much for inviting me to participate in this monumental event exploring the health issues faced by young Jewish women. It is fitting that I join you today, National Cancer Survivor’s Day, to introduce Sharsheret, a national not-for-profit organization I founded to link young Jewish women in their fight against breast cancer.
I’ll begin by sharing my own recent experience because, more than anything, it reaffirms the notion that safeguarding breast health is often, quite literally, in our own hands – the hands with which we do our monthly self-examinations. The self-examination I did in July of 2001 revealed a malignant growth that could have gone undetected for years because women my age are usually not candidates for yearly mammography.
The summer before last, just days before my 29th birthday, I was changing into a bathing suit when I noticed a small sliver of a shadow on my right breast. It was the size and shape of a bobby pin, almost, and gray in color. It looked as if the breast was indented slightly. And as I examined myself in the mirror, I remembered having read somewhere that a change in the shape of your breast could be a sign of cancer.
So I did a quick self-exam, looking for something that felt out of the ordinary. And I felt a lump. I compared it to the breast on the other side. There was no comparable lump.
I phoned a breast surgeon and made an appointment the next day. I had actually seen a breast surgeon twice before for other lumps I discovered while nursing my babies. Those lumps had turned out benign. This one was not.
And I remember asking the doctor: not “Why did this happen?,” but “How did this happen?” – How did an otherwise healthy young woman develop breast cancer? Before my diagnosis, and before my work on Sharsheret, I did not know of a single Jewish woman under 30 with breast cancer. Jewish grandmothers? Yes. Aunts? Maybe. But young Jewish women? Not one. And I have come to believe that more frightening than living with cancer is believing that you are the only person like you living with cancer. Immediately after my diagnosis, I struggled to find someone close in age with whom to speak. There were a lot of offers to speak with great aunts and grandmothers. But my issues were different from those of an older woman. I have two young children to raise, not to mention children I still want to bring into the world. I have a career—I am an attorney—I have a young husband. At the time of my diagnosis, I was not yet 30.
I called organizations I thought would be able to help me. But time and again, I was connected with women with whom I had only cancer in common. Aside from our diagnoses, our lives were nothing alike. One breast cancer organization connected me with a young woman who had no children, never wanted children, when almost all of my questions were not about my diagnosis, but about the effects of cancer on my children. In most support groups, I was the youngest woman in the room by an average of 20 years.
Then finally, a neighbor called to tell me that she knew of another young woman from a close-knit Jewish community, who was raising three children and undergoing treatment for breast cancer. And that is how I was introduced to Lauryn, who became my Link – what we now call our Sharsheret supporters. Finding Lauryn was like finding a sister. I finally had someone with whom I could discuss life as a young person with cancer in a small Jewish community; someone with whom I could discuss body image and sexuality, and someone with whom I could discuss the fears I had for my children, for my husband, and for myself.
And I remember, in one of the first of many, many phone calls, I asked Lauryn: where are the other women like us? We can’t be the only two young Jewish women fighting breast cancer. Unfortunately, we are not. And that is how Sharsheret was born.
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Over the past 15 years, the Jewish community has played an increasingly important role in educating women about the importance of early detection. We have shower cards in Mikvah preparation rooms in many cities. Organizations like Hadassah and Amit are sponsoring breast health awareness events. And I applaud the community for attempting to keep pace with early detection efforts. But when it comes to grappling with the issues women face once they are diagnosed, the Jewish community falls off the cliff a bit. I was shocked to discover that there are no national organizations dedicated to supporting Jewish women of all backgrounds in their fight against breast cancer.
I should not have been surprised. So many of the issues we addressed at the Symposium today were considered taboo to discuss in the Jewish community not twenty years ago – infertility, genetic disorders, hereditary cancers. My own grandmother would likely have felt uncomfortable in this very room. But we have welcomed a new era of information and education. And with it, comes a new responsibility: to alter the legacy of secrecy that has enshrouded women’s health issues in our community.
I am most proud of Sharsheret’s success in turning conversations that were once deemed a source of embarrassment into a source of empowerment. Our Link Program pairs young Jewish women, newly diagnosed, with volunteers who can share their personal and medical experiences as young breast cancer survivors. Callers benefit from the wisdom of our volunteer supporters, and those supporters, in turn, watch what was once a traumatic experience become an empowering opportunity to help others in need.
Our mission is premised on the notion that, often times, women who are diagnosed want to reach out to others who share not only their diagnoses, but also their life background. As we have explored here today, so many of our health issues are shaped by our experiences as young women and as Jews. Yet by far the most frequent question I am asked about Sharsheret is, “Why a breast cancer organization for young Jewish women?” I have learned to master my lists of concerns unique to young women and to Jewish women. And I have, at the same time, helped others learn to appreciate that although women of all ages and all religious backgrounds fight breast cancer, our experiences as cancer patients and as cancer survivors are to great extents shaped by who we are as young women and as Jews.
Being an advocate for the medical concerns of young Jewish women has meant having to do two things simultaneously: first, I’ve had to identify the issues unique to young Jewish women, and second, I’ve had to defend the right to identify the issues unique to young Jewish women. Although the medical community prides itself on its increasing ability to tailor medical treatments to the individuals it seeks to heal, it seems hesitant to explore the individual experiences of those who need healing. Events like today’s Symposium sharpen our advocacy tools by affording us the opportunity to appreciate the differences that shape our experiences.
Young women are confronting issues of self-image. We are dating, marrying, having children, and raising children. We are balancing careers and social lives. And when we face health crises, we are juggling medical appointments on top of all else. Jewish women who face health crises feel the impact on religious ritual and practice – using the Mikvah bald during chemotherapy, or ushering in the High Holy Days in the midst of radiation. And Jewish women must cope with the spiritual crisis that can accompany a traumatic diagnosis. We can advocate for the needs of young Jewish women only once we have taken the time to distinguish the circumstances that affect those needs.
I’d like to share with you an e-mail we received at Sharsheret not long ago because it highlights that which makes our experiences as young Jewish women unique, and simultaneously captures that which makes Sharsheret’s services invaluable. I’ve changed the sender’s name to respect her privacy. The subject of her message is: “Link me.”
“Hi. My name is Sara. I was diagnosed with DCIS a couple of weeks ago, and will be having a bilateral mastectomy with an immediate free tram in May. My mother currently has metastasized breast cancer, so doing the right side prophylactically makes me feel much better. By the way, I am 34 years old, I have four children ages 10, 5, 3, and 16 months, and my husband is a Conservative Rabbi.
“I have heard that your group has grown by leaps and bounds and I would love to be linked with someone who has been through a similar experience to mine. Actually, I was wondering if there are any other Rebbetzins in your group. I would really love to know how they handled telling their congregation and creating boundaries that they were comfortable with in relation to their congregants. Please call me or email me at your earliest convenience.”
We were able to find this young woman a Link – another 30 something year old woman, who has 4 small children, had a bilateral mastectomy, and the same type of reconstructive surgery. But more significantly, this woman’s Link was another young Rebbetzin, who had addressed the same issues of community and congregation when she was diagnosed with breast cancer 4 years ago.
Sharsheret’s outreach is to the entire spectrum of the Jewish community – Chasidic, Orthodox, Conservative, Reform, Reconstructionist, Unaffiliated. And the response has been overwhelming. We have received over 1,300 phone calls at Sharsheret in the 15 months since our inception: from Jewish organizations, women’s organizations, breast cancer organizations, and most important, from young Jewish women looking for support, or calling to offer their support to others.
I am disappointed that there are so many young Jewish women to be helped – there is nothing all of us would want more than to close up shop for lack of interest. But I am also heartened by the strength of the women who have joined our efforts to help others. Women are calling who are themselves ill from the effects of chemo, wanting to help others—now, not when they are feeling better, but now— knowing how scared and confused one feels when faced with a new diagnosis. Women are calling to volunteer whose lives have been touched by breast cancer – whether it has affected their mothers, their sisters, their aunts, their friends. And women are calling who are healthy and active, and who feel compelled by our mission and want to be a part of something that is already bettering the lives of women around the country.
Sharsheret is thriving not because one woman founded a national organization, but because that organization’s seeds were planted in a community prepared to respond to the challenges we identified. Women who initially called in for support are now calling in to volunteer as Sharsheret Links. And the chain is growing, with callers from California, Connecticut, D.C., Florida, Georgia, Hawaii, Illinois, Maryland, Massachussets, New York, New Jersey, Pennsylvania, South Carolina, Texas, Washington, Wisconsin, and even St. Thomas in the U.S. Virgin Islands.
All across the country, and in this very room today, we are generating conversations that will work to obviate the legacy of secrecy that has hindered progress in the area of health for young Jewish women.
And the consequences of those conversations will be enduring. Not too long ago, my son Shlomo and I were picking up a package when the woman behind the counter appeared wearing a baseball cap similar to the hats I wore during chemotherapy. Shlomo’s little body tensed, and I thought it would be a great opportunity to show him that cancer happens – not just to mommy, but to lots of other people. So I gently probed him, “I see that you notice that Cathy is bald. What do you think that means?” I expected him to answer “She’s sick.” Instead, he looked up and said, with obvious pride and admiration, “You’re helping her.” Sharsheret had turned cancer on its head – in Shlomo’s eyes, it was no longer about illness, but about healing and helping. Advocacy had shaped adversity into opportunity. And that is the legacy that we will all leave to our children.
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© Rochelle L. Shoretz