Jonatha and Josefa
Left to right: Jonatha and Josefa
By Jonatha, a Sister Study participant from Massachussets
When my youngest sister Josefa was born, I was four years old and happy to join my older sister to sell tickets to see “the youngest baby on the block.” Of course, our mother put a stop to the idea as soon as she found out and scolded us.We were surprised at her annoyance; we thought the new baby was an amazing addition to the family. As a family of four girls, close in age, we grew up sharing bedrooms and interests. We went on family trips, alternately restless and bored by hours in the car or united in singing, telling jokes, playing games, and asking if we could stop for ice cream. When I was fifteen, my sisters, our cousin and my mother all hiked the Appalachian Trail for a week. I still have a vivid image of Jo and our cousin—with whom she had a special relationship for the rest of her life—seated on a raft in the center of a cold mountain pond cupped in green hills and pine woods, turning in a slow circle and talking intently.
In April 1997, after a routine mammogram, my sister Josefa was diagnosed with Stage III breast cancer. She died April 15, 2001. My sister was not an easy person — “prickly” and “difficult” are words that even friends applied to her. At the same time, Josefa was a brilliant teacher and a charming, witty, and generous person. She engaged with people who interested her. She loved learning, antique glass, fabrics and embroidery, good food, and cats. Her life’s work always centered on language and its structures (editing, publishing, teaching) and her own writing. The beauty of the natural world sustained her. I asked her once if she really liked living in a tiny apartment on the twenty-sixth floor of a high-rise building. She replied that when she came home from a day of work and an exhausting commute, she would open the door and there, through the west facing windows, would be a brilliant sunset and the immensity of the horizon to greet her. She once gave me a gift of ten different kinds of rice that she had collected in the ethnic markets of her neighborhood.
I will not claim, nor, I believe, would she, that her struggle against the cancer, that invaded her lymph nodes and metastasized to her bones, made her unique. While she hated the indignities that her failing body subjected her to — the loss of privacy and control of her own destiny — she was brave, but so were others, and she admired that. One of her friends said of her that she was able to look on her experience as a cancer patient with the eye of a sociologist, analyzing the roles, systems, and rules of a special culture. Her reflections were always intriguing—and she enjoyed a passionate debate with anyone who challenged her, even her oncologist, whom she admired and who came to her funeral. Jo was never ready to give up the fight for her life, and she wanted others to know it.
My sisters and I belong to two groups—Ashkenazi Jews and French Canadians—that are considered to have elevated risks for breast cancer. When Jo was offered genetic testing as part of a treatment study she had joined, she accepted eagerly and was puzzled and interested that her profile showed no indication of the genetic markers for high risk. She wanted answers! That is why I was excited when a friend sent me an email to tell me about the Sister Study and to recommend that I look at the web site. I read the information with great interest. Here was the promise of an in-depth, scientific study that would enable me to honor my sister’s desire for answers. In concrete action—completing a questionnaire, giving a blood sample—there is satisfaction for me, and a sense of hope. Jo did not live to learn the answers to her questions about genetics, about diet, about the environment, but I along with others can help advance the search for scientific truths. Why one sister and not another? She wanted to know and so do I.
Responding to her own losses, Jo wrote a poem about the dead. She envisioned them not as ghosts or angels but as benign and humorous presences still existing just beyond our consciousness. “They roam, they roam,” she wrote, “around your sleeping borders. Embrace them. They are smiling in your sleep.”