Science writes its own patients' history. It is data and success-rate driven. Alongside these scientific reports are patients' stories, the personal lives of science. Though data-oriented, their criteria for success are far more complex than the ones elaborated in the labs and relayed in scientific journals. They are layered stories which narrate access and lack of access to care, as well as trust and distrust in the healthcare system due to social status, race, cultural differences, and history.All too often, they point not so much at science itself, but at the science of profit-making in the health industry.
Once in a while, you come across a cluster of stories that become smaller and fainter with time as they expose the evolution of outdated science in very real human bodies, a small body of aging human bodies. I belong to such a group of story-tellers who celebrate science's triumphs and aspirations while fostering vigilance toward science’s missteps and the greed of the health industry.
I was born the very premature daughter of Jean and Geneviève Magnan in Avignon (France), in 1970. My mother could see the color of my eyes through my eye-lids and when she lifted my disproportionally long fingers to the window, she could see the shadows of my bones through the flesh. When the paperwork to declare my birth emerged, both my parents signed the papers and my father took them to the City Hall. They claimed me, they gave a name to the tiny body "qui tenait dans une boîte à sucre" [that could fit in a box of sugar cubes]. Unbeknownst to them, I was silently claimed by science too. It gave a name to many young females like me across the world: DES daughters. It labelled our brothers, mothers, and children in a similar fashion too: DES sons, mothers, and grand-children.
Diethylstilbestrol is a synthetic estrogen which was used to prevent miscarriages. In the USA, this “wonder drug” was prescribed from the early 1940s to the early 1970s, even though its efficacy was questioned as early as 1953. According to the Center for Disease Control and Prevention “5 to 10 million pregnant women and the children born of these pregnancies were exposed to DES.” Because DES was thought to be safe by those who prescribed it liberally, identifying the women who took DES or the children who had been exposed to it in utero proved to be quite a challenge once the FDA issued a warning against its use in 1971. Females who were exposed to this endocrine disrupter in utero -- DES daughters -- have an elevated risk of contracting a rare form of vaginal and cervical cancer, reproductive tract malformations, infertility, and pregnancy complications.
Sometime in my early teenage years, my mother rushed me through the circumstances of my birth. The doctors had prescribed a medicine because her body was giving clear signs that she might lose me. Midway through her pregnancy, her doctor asked that she stop the medication; American doctors were starting to see birth defects in the some of the girls who had been exposed to it in utero. My mother was terrified to lose another baby, she was equally tormented to carry a baby physically impacted by the medication, but she did as she was told. I was born a few weeks later. Many years passed. As I was getting ready to conceive, I approached my mother for more details. A conversation followed, akin to the exchanges many DES children had with their mothers. "Do not worry about that" was the answer I received. I insisted and asked for the name of the medication. She claimed she did not remember. I gave her the name I had found. She responded: "You have no symptoms, don't look into it any further." She had her reasons to prevent me from doing more research as she suspected I would. And I knew exactly what she was trying to avoid. My being a DES daughter made her a DES mother, which increased her likelihood of getting breast cancer by thirty percent. She had resolved not to let me carry that kind of guilt. It was science's issue, not a blood-related issue. My birth and her potential sickness or death had to stay separate. Like many of my DES sisters, I wonder: would breast cancer have claimed the life of my mother had she not been a DES mother too?
I chose not carry that guilt to concentrate instead on the many powerful ties that constitute our mother-daughter bond. Because I am more fortunate than some of my DES sisters and brothers, I can joke about my reproductive tract, to conceive of it as a more evolved, radical, and wiser part of my body than my Ph.D. brain. I claim that my uterus is ultra-feminist, that it naturally welcomes sex for sex, but rejects sex for reproduction. Naturally or, perhaps, with a nudge from science. I’ve come to respect my body’s sensitivity to hormonal changes as a form self-protection, even though this involved miscarriages.
Still, like many, I look at my body as a palimpsest of science and consider my connection to science as an evolving relationship. The science we ingest is part of our individual and collective stories, and the acts of researching, story-telling, and listening can provide a form of healing, a sense of agency and community. It is a form of activism emphasizing responsibility, that of the patients, of the healthcare system, big pharma, and policy makers.
Anne Magnan Park is a literary translator who teaches English and French at Indiana University South Bend.
Music:
Anne Sylvestre – “Ma chérie”