A sister’s keeper, a sister’s witness

Most of us probably haven’t had occasion to learn about perinatal hypoxia. Like many other forms of suffering, this one can escape our notice until it becomes intensely, persistently personal. Oxygen deprivation in the womb or during birth, when it isn’t fatal, redirects the entire life course not only of the child but of the whole family. The brain damage it causes can result in developmental delays, cognitive impairments, behavioral disorders, and physical challenges ranging from epilepsy to cerebral palsy.

Effects less frequently named or acknowledged include the wakeful nights, emotional stress, bewilderment, spiritual wrestling, and the social shaming that brain damage brings for both the affected person and her family members. Those chronic challenges generally leave little energy for creative work in addition to caregiving. But now and then, a parent or sibling or loving witness finds the words and the time to tell stories about the long aftermath of perinatal hypoxia. We need those stories to deepen our understanding of what sustained care and spiritual resilience require.

Kathleen Norris wrote more than a dozen books, several of them widely acclaimed, before deciding to write and publish her sister’s story. Rebecca Sue is not so much an illness narrative as a series of reflections, vignettes, and recollected epiphanies gathered from 60 years of intimate relationship with a sister whose brain damage became a formative factor in the writer’s own life. To call the book a loving tribute would be true, but that way of putting it would gloss over Norris’s sometimes gritty honesty about what it took to live with Becky’s recurrent periods of rage, dissociation, despair, and wild public behavior—all of which coexisted with reciprocal affection, emotional vulnerability, and a surprising capacity for faith in a God who seemed so fundamentally to have let her down. Loud noises upset Becky, but her own outcries and angry monologues penetrated walls and kept family members wakeful and troubled many nights. She longed for a boyfriend and tried in complicated ways to be attractive, but abuse by a ship steward as the family traveled to their new home in Hawaii when she was a teenager left her confused, unstable, and uncertain about how to invite and enjoy male company. The family learned of that abuse only after she had been haunted by the memory for years.