The Meaning of Survivorship

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Breast Cancer Awareness
10 Jul 2007

Let me set the scene. I was recently at a survivor breakfast for Susan G. Komen for the Cure’s national affiliate conference. All the women in the room were breast cancer survivors. There were hundreds of us. Lot’s of pink. We were all staff or volunteers for a cause we’ve lived. There were thousands of other employees and volunteers at the conference, but this was our “special moment” as survivors. The mistress of ceremonies was a National VP of the organization who is a thirteen-year breast cancer survivor. I guess she is often put in the role of “official survivor” and her opening line is the spark behind this article. She said “I decided last year that I don’t want to be a survivor anymore.” Fascinating.

I know her personality and lust for life, and so I know that she does not mean that she hopes for a speedy end. I think she would just like to lose the label. She just wants to be Nancy, or Jane, or Miriam, or Darleen. She does not want to be the history of her disease. She does not want the pointed “How are you?” to which people expect something more than “Fine.” She does not want her doctors to treat a hangnail like a life-threatening symptom and order a battery of unnecessary tests. She might even want her body back “whole.” Alas, those things are not to be. As long as she continues to work or volunteer in the breast cancer arena she will wear that label. Among her friends, relatives and community she will wear that label. She has earned it, but she didn’t want it.

There are two things to know about me and survivorship. One is my relationship with my own survivorship. The second is my relationship with the word survivor.

First, my own very private and then very public survivorship. I had breast cancer at 40 when I lived in Rhode Island. People in my community and in my wider circle knew about it and still, to this day ask the very pointed “How are you?” which is answered with not just “Fine” – that is insufficient, but with “Fine, all’s well” or “Fine, nothing new” or “Don’t worry.” Soon after my diagnosis and treatment, I moved to the Boston area; new friends, new community, new work. No one knew me as a breast cancer survivor and generally I saw no reason to tell them. A few close friends knew. My physicians and family knew. But in my wider circle it was “privileged information.”

Then I started my new job. Six years after having been diagnosed with breast cancer I became the Executive Director of Susan G. Komen for the Cure’s Massachusetts Affiliate. Now being a survivor has become part of my public persona. I talk about it on the radio, with newspaper reporters and on television. I speak publicly about survivorship and as a survivor. Other cancer patients are comfortable talking to me about their travails as I have faced the big bad “C” and continue to be healthy and active. I am as a friend said “well adjusted for a person whose body has been mutilated.” O.K. – she doesn’t get the sensitivity award for that one… But what a huge change for me. With the exception of one strange incident, when I was in transition to this public role and a friend mocked the new public nature of my story, it has been a smooth transition. Strange, but smooth. My breast cancer history went from being “TMI” (too much information in teenager speak) to being Miriam May – Survivor. I still don’t consider it definitional, but like my colleague at Komen National, I can’t make it go away either.

So why does the word survivor carry so much weight with me? What is my other relationship with the word ‘survivor?’ Interestingly it is tenderer than my relationship with breast cancer, more like a toothache that you touch once in a while with your tongue. Not bad enough to deal with, not easy to ignore.

I grew up in a synagogue full of German Jews. I grew up in a family full of German Jews. Mostly they were refugees like my parents – folks who had “gotten out” before the war and the camps. Even as a child the distinction was very clear. Amongst them were those with numbers tattooed on their arms; those who were survivors. They mostly did not talk about their time in the camps. Perhaps not enough time had passed. I remember being visited by the parents of a childhood friend when I was a young adult in my first job in D.C. I knew she was a survivor. I had known that fact and only that fact for years. But only on this visit did I hear her story; her survival of Auschwitz, her sister’s sacrifice, her parents’ loss. Maybe I was old enough that she could tell it. Maybe enough time had passed. Maybe she had come to terms with being a survivor.

As the generation of Holocaust survivors’ ages and dies, as they largely will over the next years (as, with the exception of child survivors, the youngest are in their seventies,) there will be no “new survivors” to replace them. No more to tell those stories based on experience. To own it. Some of them waited too long to talk. Some never did. Therefore collective memory, witnessing, projects like the Spielberg’s Holocaust program and others are so important. It is sad they will be gone. It is such a glory that Jews, as a people, have not faced that particular kind of horror since.

And I work for the day when the same can be said of breast cancer; when there will be no new breast cancer survivors. Maybe that day will come speedily. In the meantime, I am willing to stand up and say I am a survivor now, because as all survivors learn, having people know doesn’t hurt and might just help others on their road to survivorship.

Miriam May is Executive Director of Susan G. Komen for the Cure, Massachusetts Affiliate; wife of Rabbi Professor Shaye J.D. Cohen and mother to their four children.

The words of this author reflect his/her own opinions and do not necessarily represent the official position of the Orthodox Union.