Turning a cancer diagnosis into a time of luminosity

Sandra Butler has a political agenda. But unlike most activists, she uses the medium of love to promote her issues and it suits her well. Tall, slender and attractive, the gray-haired Butler has a smile that exudes warmth and comfort. But behind that motherly exterior is a courageous heart that takes on hard, painful issues.

Currently Butler is co-producing "Ruthie and Connie: More Than A Love Story." It's a documentary about two Jewish women who fell in love with one another in the mid-1970s and left their marriages so they could be together. It's a story about internal struggles of self-acceptance as well as external struggles against bigotry and homophobia. In 1988 Ruthie and Connie became national heroines when they sued the New York City Board of Education and succeeded in getting domestic partner benefits.

"It's about two Jewish, aging lesbian activists," said Butler, "who I imagine Barbara and I might have become had she lived."

That's Butler's own story -- the one about her partner, Barbara Rosenblum, who died of breast cancer in 1988. "Cancer in Two Voices," which was published in 1991 and recently reissued in paperback, tells that story.

"We started keeping journals immediately [after the diagnosis] with the understanding that I would shape it into a book," said Butler, 62, who lives in Berkeley. "It would be in both voices and honor a lesbian community that had not been included in any discussion about women with breast cancer."

That was in 1985, before breast cancer was discussed openly, before there were breast cancer support groups, before there were healing centers and before there was a body of literature about what it was like to live with the devastating effects of the disease and its treatment.

"I am only the first among our friends to have cancer," wrote Rosenblum. "There will be others. As the graphs and statistics show, we will hear about more cases as we grow older. Such a weighty responsibility to be the first, yet it gave me a purpose. I am trying to live self-consciously (and perhaps die self-consciously) in an exemplary manner. Many of my friends will see their future in the way I handle mine."

Rosenblum died at 44 on Valentine's Day in 1988.

"Cancer in Two Voices" is a road map for those of the future. In excruciating detail, it describes the course of the disease. But more than that, it's a love story of two women who, with the support of their friends, rabbi and Jewish community, faced death with dignity. They never wavered in their commitment to each other. It was a period that Butler describes as "luminous."

When she was first diagnosed it was clear Rosenblum's breast cancer was terminal. The cancer was aggressive and had already invaded her lymph nodes. It was also a case of medical malpractice. Although Rosenblum had consulted doctors on several occasions about lumps she had found during self-examinations, she was met with indifference and dismissed. The diagnostic tests that would have diagnosed the breast cancer earlier, giving her a better chance at survival, were never administered.

Although their medical malpractice suit was settled for a substantial sum that freed Rosenblum and Butler from financial worries, it was little consolation for a life needlessly cut short.

The couple also faced a world that was often homophobic. Whether dealing with insurance companies, doctors or other medical personnel, they were not afforded the same rights and privileges as heterosexual couples.

Although it took a year after Rosenblum's death before Butler could touch the paper her partner had written on and view her words, she distilled their journals into book form.

"Cancer in Two Voices" is a courageous and bluntly honest account of the day-to-day experience of living with breast cancer, from both the patient's and survivor's perspectives. The work confronts and explores the whole range of emotions the two women experienced, no matter how intense or unpleasant.

The reader is not spared any of the details about how the disease and treatment ravaged Rosenblum, from the initial mastectomy and hair loss, through the sometimes grotesque swelling of her body and rampant sores in her mouth. At one point Rosenblum comments that the measure of true intimacy is not who you sleep with but who you can vomit with.

It's also about how Judaism came back into both women's lives and the sustenance they derived from its spirituality, tradition and ritual. And it's about how they learned not to let the future ruin the present.

To live in the present and enjoy the gifts it brings, whether it's chocolate, sushi, a trip to Italy or a bad pun.

"Our relationship deepened enormously after the diagnosis," said Butler, adding that before the diagnosis they always assumed there would be time to work out any disagreements. "After the diagnosis we realized we were in a primary relationship with time. [Working things out] was not how we wanted to spend the time we had left. So we really stayed in the present with its blessings."

Although both women were born Jewish, neither knew much about Judaism. Rosenblum, a sociologist, was raised by working-class, immigrant parents in New York. Butler came from a middle-class, assimilated family in Boston. But as the breast cancer progressed, so did their yearning for spirituality.

"After her diagnosis, there was the agony of her death and mine about losing her. We wanted to engage the possibility of faith," said Butler. "We joined [San Francisco Congregation] Sha'ar Zahav and found a welcome home there and a rabbi, Yoel Kahn, who was accessible and welcoming to our baby steps. Over the three years, our deepening sense of being Jews, taking on a spiritual dimension as well as political and cultural dimension, grew."

Judaism, said Butler, gave them understanding and meaning, providing an anchor during their agony. Until her death, Rosenblum studied with Kahn weekly. She even planned her own funeral, opting for a traditional Jewish ceremony.

Since Rosenblum's death, Butler has continued and expanded her relationship with Judaism.

Reflecting on the course of Rosenblum's illness, Butler says she could have been a little less protective, but other than that there is nothing she would do differently.

"It was an absolutely luminous time. It was a time when we both elicited the best in one another. In the largest way it was so much a time of being utterly alive, utterly conscious, utterly in the present tense, utterly aware of the love we had as we were dealing with a more and more diseased-filled body."

These are lessons that continue to govern Butler's life, the concept of time providing a framework for how she views herself. Like she had done with Rosenblum while they prepared for her death, Butler said, "I think of myself in a primary relationship with time.

"How I inhabit time. How I use it. How I illuminate time so it's a blessing...filled with the divine every moment. How to be conscious. How to be present and how to connect to what is the divine in each moment, in each person, in each possibility."