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Swimming in Uncharted Waters

Perfectly Normal: A Mother's Memoir - Marcy Sheiner

“Perfectly Normal,” the story of the growing pains of a handicapped boy and the mother who loves him, packs a wallop. Ms. Sheiner writes with such clarity and passion that I got several lumps-in-throat along the way. Yet the compelling story of her son's struggles and her constantly evolving responses to those struggles is leavened with some detachment, a sharp observational eye, and humor.


Despite the concise prose and short length overall, much ground is covered. For this story is not only about Sheiner and her son, Daryl, but about the profound changes over the last 50 years in the diagnosis, treatment, understanding, and outcomes of the cruel medical condition formally known as hydrocephalus and commonly known as “water on the brain.” Toward the end of the book Sheiner begins to realize the pioneer role that Daryl and she played. In fact, he was one of the first to endure and survive a shunt operation.


Having grown up in the 60s as did Sheiner, I can vouch for her pitch-perfect recall about the steel rollers in women's hair, the salmon-colored seats in waiting rooms, and the smells of Toll House cookies that wafted through this ostensibly “perfectly normal” time. Under the surface, however, the era was ready to erupt into someting quite different. Sheiner's path was just as turbulent as the era, and she shares her personal growth toward consciousness and radicalism unstintingly. The personal story and the larger picture are tied together with great finesse.


Even if personal opinion should be allowed great latitude in a memoir, there appear to be a few too many villains in the piece. Nearly every main character comes in for harsh criticism, whether for failing to notice Sheiner's plight or for failing to do anything about it. This creates an uncomfortable sense that parts of the memoir may represent “payback time” for these perceived failings of her inner circle.


This is not to say that the author merely unloads her pain onto others, for she is equally unsparing toward herself. For example, on pg. 117: “...I, a middle-class American girl, suffered from malnutrition substantial enough to cause a birth defect in my child...” Sheiner bases this startling self-accusation on recent studies which have shown that a lack of folic acid (found in green leafy vegetables) is a primary cause of diseases of the central nervous system in newborns. Having “...lived primarily on chocolate chip cookies and Coca cola...” throughout her adolescence, and having continued this regime during her pregnancy, Sheiner has “...no trouble believing that Daryl's hydrocephalus resulted from my poor nutritional habits.” For what it's worth, this reader, who was raised with 8 sisters, many of whom had woeful eating habits not too different from those described by Sheiner, finds it difficult to believe that the author's eating habits were the certain cause of her son's condition.


Engagingly written and emotionally honest, this book pulls no punches. On the contrary, her presentation will land solid blows to the ignorance and complacency of many an AB (able-bodied) reader, if they are willing to learn from her hard-won experience. We are better off for Marcy Sheiner having written this book.