p r e f a c e
This is a book we did not want to write, about a proj ect that we did not want
to undertake, about experiences that were not framed as research and that
continue to create deep ambivalence within us. Nevertheless, there are times
when the world calls you and you must either respond or face the realization
that you have turned your back on it. This is our response to a call to “tell me
why my children died.”
The story we tell here looks into the depths of human misery, a nightmarish
tale centered in a Venezuelan rain forest. It focuses on the death of children—
sometimes one after another in the same family—from a disease that leaves
no survivors, tortures bodies and minds, was never officially diagnosed, and,
once symptoms appear, remains untreatable. Many of the words are not our
own— they were spoken by parents who want the world to know about their
children’s deaths, parents who refused to let their children’s deaths turn into
memories deemed to be of significance only to them, only recalled as people
lie in their hammocks in the darkness of rain forest nights. Other words are
spoken by the nurses and doctors who tried to treat their young patients— only
to watch them die in agony. Cuban and Venezuelan epidemiologists, in their
turn, tried to solve the puzzle, which was as baffling and unpre cedented as it
was per sis tent. Healers were equally unsuccessful. Politicians and public health
officials attempted to make the epidemic dis appear—or turn it into more evi-
dence of the supposed cultural inferiority of a population whose health they
were charged with protecting. Journalists told readers and viewers around the
world about the epidemic, only to drop the story after just two weeks, when the
government claimed to have resolved the situation— without even providing
the parents with a diagnosis or scientists with a scrap of evidence.
This book centers on a challenge that parents and local representatives
continue to pose whenever doctors, officials, or journalists will listen: “Tell me
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