“You once told me you wanted to be a doctor,” the physician told her 6-year-old patient, making conversation. But the boy lashed back, screaming and throwing an empty syringe at her. “I’m not going to be anything!”
When the attending nurse asked what he was going to be then, the boy replied, “A ghost.” With those words, he turned over in the hospital bed and looked away.
This 6-year-old boy was well aware that he was dying of leukemia—one of many heart-wrenching cases from The Private Worlds of Dying Children, the groundbreaking book by Myra Bluebond-Langner, a 2009 LAS Alumni Achievement Award winner. His story was also just one of many cases illustrating the extent to which dying children are aware of their illnesses.
Bluebond-Langner, an anthropologist at Rutgers University since 1974, is nationally known for her work with seriously ill children, which began while pursuing her PhD at the University of Illinois in the early 1970s. In fact, her PhD thesis at U of I became The Private Worlds of Dying Children—a work still referenced today because of its innovative style and the rarity with which the topic was studied at the time.
“Back then,” she says, “most people had studied children not by talking with the children themselves, but rather by interviewing others about children.” This led to a serious misconception; most people did not think that young children were fully aware that they were dying. Bluebond-Langner’s work was the first to shatter that myth.
All of the children she studied “knew that they were dying before death was imminent,” she says. “Some children said directly, ‘I am going to die.’ Other children were less direct. They talked about never going back to school, of not being around for someone’s birthday, or of burying dolls.”
The children also knew that adults did not want to talk about the illness; they knew the taboos. But they still managed to acquire considerable knowledge about their condition, sometimes pretending to be asleep so they could eavesdrop on conversations between doctors and their parents. After one child died, her parents found a list she had kept of other children in the hospital who died of the same disease.
However, Bluebond-Langner stresses that it is too simplistic to make a blanket statement that dying children should be made aware of everything or they should be kept completely in the dark.
“I think it is of the utmost, utmost importance that we keep in mind that the question is not whether to tell or not to tell the child,” she says. “The question is rather what to tell, when to tell it, and who should do the telling. Different children have different needs at different times.”
Bluebond-Langner grew up in Philadelphia, where her parents regularly took her to museums on Sundays and first introduced her to the mysteries of other cultures. In high school, after she expressed an interest in exploring how people think about the world, her history teacher pointed her in the direction of anthropology.
Bluebond-Langner did her undergraduate work at Temple University, a double major in both anthropology and English. Her English background created a desire to look for new ways in which to write ethnographies, and her instruction from U of I professors ensured that her writing would be jargon-free. As a result, much of the material in The Private Worlds of Dying Children is presented in the format of a play, something that had not been done before in ethnographic research. The dialogue was drawn from extensive recordings of conversations among children, parents, hospital staff, and herself.
“I was interested in finding a way to immerse the reader in the experience of what it was like for these children,” she says. “It was very important to me that people begin to hear the voices of children.”
Bluebond-Langner has continued this innovative approach throughout her career, such as in her second book, In the Shadow of Illness, published in 1996. The book presents portraits of families with children suffering from cystic fibrosis, a life-shortening genetic disease; and this time she uses a narrative style—as if one is reading a novel. The narratives are taken verbatim from transcripts of interactions among family members, as well as interviews with parents, children with cystic fibrosis, and siblings who all talk about living with the illness. Then she follows with an analysis of the study’s results.
“In the Shadow of Illness explores how siblings and families adapt over the course of the illness,” Bluebond-Langner explains. “It’s about how they contain the intrusion of the disease.”
It is also about the fear. Two months after their daughter was diagnosed with cystic fibrosis, one mother said, “We haven’t had our other child tested yet. I am afraid to even kiss him.” Children with cystic fibrosis secrete large amounts of salt, so this mother was afraid she would taste the salt if she kissed her healthy son—a sign that he too might have the disease.
Bluebond-Langner’s research has greatly influenced pediatricians and other medical personnel, improving communication between families and physicians. In addition, she founded the Center for Children and Childhood Studies, home to programs in literacy, family and physician education, and a graduate program in child development. She also founded and edits the Rutgers University Press Book Series in Childhood Studies—the first multidisciplinary book series in childhood studies.
Throughout it all, Bluebond-Langner is often asked how she can handle such a difficult subject as dying children. But as she explains, she does not have the burden of living with the illness or the physician’s burden of treating the children.
“The difficulty for me stems from a sense of obligation to get it right, to make sure that their voices are heard and that I’ve interpreted correctly what’s going on,” she says. “I have the burden of making sure that my bearing of witness is right.”
By Doug Peterson