What the Kushnicks confronted in the aftermath of Sam’s death is a dispatch from a cruel, calamitous time. It started with the refusal of the hospital, Cedars-Sinai Medical Center, where Sara and Sam were born and where Sam died, to even acknowledge the cause of his death, let alone their culpability in it. The hospital wanted to list pneumocystis pneumonia, but the Kushnicks insisted his death certificate say AIDS. Helen and Jerry dedicated themselves to finding out what had gone wrong, if other children were infected (there were dozens from Cedars alone), and how to prevent further catastrophes. They met with stonewalling and denial every step of the way, from the hospital to the Red Cross to the government. When Sam died, there was no category for pediatric AIDS, so the Kushnicks were told his death would not count in official statistics.
Despite overwhelming grief, the Kushnicks brought attention to the dangers of contamination in the blood supply, the need for better research and treatment, and the horrible stigma and ostracism endured by AIDS sufferers. Eventually a report by Surgeon General C. Everett Koop on pediatric HIV infection issued in 1987 was dedicated to Sam “in testimony of how much ‘his life has counted.’ ” It included an essay from Helen on a parent’s perspective. Helen wrote: “In 1983 my family’s decision to go public with our story seemed courageous. To us, it was simply a question of not having a choice. It was clear to us then that AIDS was not a homosexual disease, but a virus.” It’s a truism now; it was a manifesto then.
Helen described how Sara, thriving and free of the virus, was thrown out of her preschool in a wave of hysteria. Two years after Sam’s death, no private school would allow Sara to be admitted to their kindergarten, despite repeated testing showing she was not infected with HIV. Helen wrote, “The most horrendous part of this disease is fear and rejection. It is hard enough for an adult to cope with and impossible to explain to a child.”
Helen and Jerry relentlessly fought the powers that be to bring about change and redeem Sam’s death. When I interviewed Helen all those years ago, she told me that she felt the agony of Sam’s death led to Jerry’s fatal cancer. When I spoke to Rosenthal recently, she told me she felt the stress and grief took them both.
In a 1988 story in the Los Angeles Times about the Kushnicks’ work on AIDS, 7-year-old Sara is quoted about her brother’s death: "Things get harder for me each year because I understand more."
As Sara has grown up, like her 7-year-old self, she keeps understanding more about what her losses mean. The walls in Sara’s small, neat office are dominated by pictures of her own two daughters. Nora, at 3, is the same age Sam was when he died. She points to one photograph of her daughters and makes a delicate allusion to her missing twin: “That’s a picture of Raia coming up the stairs the first time and Nora at the top. Raia will always have a cheerleader.”
Sara’s career has been shaped by the visit to the lab named for her brother. Three years ago she was named director of the Tikkun Olam Women's Foundation of Greater Washington. The foundation (tikkun olam is Hebrew for “repairing the world”) is a grant-making group that funds programs for women and girls in the Washington area and Israel for small-business training, preventing abusive relationships, advocacy for immigrant women of any faith, and more. In her time there she has almost doubled the number of major donors, professionalized their giving, and initiated collaborative grant-making with other Jewish women’s groups to increase their impact.
During our talks I prompted Sara to go over her past, but in her normal life, she says she does not dwell on it. I ask if she thinks of herself as an orphan. “No, not at all. There are orphans left alone and isolated, and I’m not in that category,” she says. “I’ve come to terms with marrying someone who would never meet my parents. I have beautiful girls who will never meet them.”
Licursi, who was her guardian, says of Sara: “She is a person who always loved and respected her past but never, never wallowed in the grief she had lived through.”
But the past has an insistent way of refracting itself through the present. Sara says, “I’m looking all the time for my mom, for approval from the women I’m working with, the sense that you’re doing the right thing.”
Sara has seen therapists on and off since she was 3 years old. “It’s hard for Nora and Raia to have a mother who’s a little hyperaware and sensitive,” she says. “It would be unfair to friends and family and the girls not to use a therapist.” Sara quotes her therapist as saying some people have a predisposition to anxiety “and that my life is a predisposition to anxiety.”
Sara recalls a time when she was visiting Nora’s nursery school and her usually ebullient daughter was lying droopy across her lap. A teacher came over, wondering if Nora was all right, and put her lips to the girl’s forehead, the mother’s universal method of checking for a fever. Sara, who had been a healthy child thrown out of nursery school because of mass hysteria, burst into tears. “It meant so much to me,” she says.
I asked Sara how she envisions her life in 10 years. “Hopefully, I’ll have real furniture,” she says. “God willing, I’ll be at Nora’s bat mitzvah. Ten years from now I see myself alive. I didn’t always think that. My expectations were pretty low. My parents didn’t make it out of their 50s. I thought I would get cancer and die.” She describes a harrowing time after Nora was born when she discovered a lump on her breast and was hurried to a mammogram. “I was convinced this it. I’m 30, I have a daughter and an amazing new job. And now I’m beginning my battle,” she says. Thankfully, the lump turned out to be a harmless cyst.
As they were getting to know each other, Sara took her future husband to California to see her childhood sites. They stopped at her family’s burial plot, and while there, Sara says she had an overwhelming experience. “I heard the voice of my mother saying, ‘Get tested.’ ” So Sara went to find out if she was a carrier of one the breast cancer genes. She wasn’t. She acknowledges that the good news is not a guarantee of future health. “Nothing is,” she notes, but it has been a source of great relief.
And she says of her mother, now gone half of Sara’s lifetime: “I hope I’m making her proud.”
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