In an old-fashioned coffee shop in midtown Manhattan, documentary filmmaker Judith Helfand stops mid-sentence in the story of her DES-related cancer, laughing. Her forkful of chicken has just flown to the floor.
“The chicken,” she announces slowly, with clarity, into the tape recorder, “just flew off my fork and on to the floor.” The 32-year-old Helfand is obsessed with recording. For four years she worked for pennies on documentary films, following the lives of the homeless and mentally ill, sleeping on a friend’s couch for lack of funds. Then, within days of being diagnosed with cervical cancer—which ultimately claimed her entire reproductive system— she began filming the story of her own illness, and her recovery.
“All the years that I’ve been working on this film,” she said in November, seven years after her diagnosis and a week before the film’s opening at the Margaret Mead Film Festival, “on some level it was as if—I know it sounds ironic—I didn’t really have to deal with the cancer because I felt like I was in control.”
The film, accepted for presentation at the prestigious Sundance Film Festival in January and for a national airing on PBS in the spring, is entitled “A Healthy Baby Girl.” The title is rife with irony and grief, as is all of Helfand’s speech. She funny and dry and wry, and she tells the story of her illness with a certain humor and without tears. In her telling, it is the doctor who cries.
“I couldn’t even pronounce it,” she explains about the diagnosis of DES-related clear cell adenocarcinoma, “and I said to the doctor, ‘Well, listen, just do me a favor and promise me that while you guys are in there you just take out the tumor and you don’t, like, nick anything, because I really want to have a lot of children.’ And he looked at me and his eyes welled up with tears.” He told her she would never bear children.
The drama of the story that Helfand has recorded dates back to 1947, when the Food and Drug Administration approved use of diethylstilbestrol (DES), a synthetic estrogen, to prevent miscarriages. Despite research that questioned the wonder drug’s efficacy and indicated a link to some forms of cancer, the drug was prescribed to nearly five million American women—well-to-do, mainly white, many Jewish—before it “DES definitively tied to the cancer and taken off the market in 1971. Of the 2.4 million daughters of those women—many in the peak of their child-bearing years today—half have malformed reproductive organs, and one in 1,000 are expected to contract DES-related cancer. The Long Island Jewish Medical Center’s DES screening center, where Helfand had her check-ups for years, serves 150,000 people, half of them Jewish.
Helfand had been working on a film about DES when her own diagnosis came in, and it was to her peers on the crew that she first turned for support. She even considered taking them with her when she went home to her parents in Merrick, Long Island. “Luckily,” she reflects, “my therapist said, ‘Judith, are you out of your mind?'”
Today, Helfand rails against the corporate irresponsibility that left her, at the age of 25, recovering from a radical hysterectomy. “I would sit in, my bedroom and say, . . . ‘How did this unbridled corporate power find its way into the deepest part of my household and my heart and my body and my uterus and my relationship with my mother and my relationship with my mother’s womb?'”
The first thing Helfand thought when she was told that she had DES-related cancer was, this is going to kill my mother.
“I would say probably even before I thought about not being able to have children, I thought about how I was going to tell my mother. I mean, this was just going to ruin her life and she was never ever going to be the same. And that definitely took precedence before I thought about my health or the fact that I had a life-threatening disease that was coursing through my cervix.” After all, it was her mother whose best intentions for protecting her child had backfired. And it was her mother who would later say, “I wish it would have happened to me.”
“My mother,” says Helfand, “like all DES mothers, has lived with the fear that her child might get hurt, her child might get sick, her child might not be able to have a child. And even though they know that they did this for all the right reasons, they still feel, ‘Well, why did I take this . . . what if I questioned my doctor?'”
At times, in the film and in person, Helfand seems to have more sympathy for her mother than for herself Early on in the film, after her operation, Helfand and her parents sit around the dinner table, uncomfortably grieving. Her mother tells her why she must be depressed: she has no nice clothes or money or a decent place to live. And she asks her daughter, in a moment that could be heard as cruel, “So, uh, how long are you going to mourn?”
Helfand understands and, when questioned, she explains: “I’m like, ‘Hello, ma, and I don’t have my reproductive organs on top of that.’ [But] that’s just your mother scraping the bottom of the barrel. She’s trying to think, ‘Those are the things I’d be able to fix, those are things that are fixable, right?'”
Helfand’s mother’s voice echoes in her own, and it echoed in her mind as she resisted going home to heal. “It was like, ‘I’m not going to be able to feel because I’m going to be afraid that if I feel too much, it will hurt my mother.'”
But home she went, back to the room where all her “fantasies about having a Jewish family” began. And through her camera’s lens she watched her family in the “throes of a wild-ass psychological experiment.. . . It’s zany, it’s crazy, we’re not made for this!”
They may not have been made for this, but Helfand has made something out of it. She has made a deeply moving film about one family’s understanding of sickness and recovery. She has made a powerful argument for corporate and pharmaceutical responsibility. She has made a tool for a national outreach campaign, organized around the spring PBS broadcast and led by Rabbi Dianne Cohler-Esses, to inspire activism on the grass-roots level.
And she has created a very Jewish story. Helfand reflects on how her grandmother would respond—with disbelief— and on the generations of Eastern European families, “who have been trying to have families for eons.” Her film, co-written by Yiddish writer and translator Irena Klepfisz, is set to an original techno-traditional score by the Klezmatics, of which she says, “all the familiar instruments, the clarinet and the violin and the accordion, started to grind and started to morph and started to sound very synthetic. It was all about technology slamming up against family and continuity and taking it for a pretty awful ride.”
“This is about whether we live in the future or we don’t live,” she says. “So that’s what Jews have always written about. I mean, this is just different players but we’ve always written about how we can make it into the future and into the next generation.”