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Perfectly Normal: A Mother's Memoir
Perfectly Normal: A Mother's Memoir
Perfectly Normal: A Mother's Memoir
Ebook159 pages2 hours

Perfectly Normal: A Mother's Memoir

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PERFECTLY NORMAL addresses with unprecedented honesty a mother's experience raising a child with a disability-hydrocephalus. This condition causes spinal fluid to accumulate in the head, making it grow, sometimes causing brain damage. A surgical procedure developed only a few years prior to Daryl's birth has kept him alive; he is now thirty-six and lives a fully independent life.

The author was nineteen when faced with this difficult life situation. She worked through years of denial, anger, resentment, and fear; she battled with the medical profession, the educational system, and the vast array of social service providers who invaded her life. Her journey radicalized her with regard to the way society treats people with disabilities; by the time Daryl reached adulthood she was involved with and writing about the Disability Rights Movement. She speaks with absolute candor about personal difficulties and social injustice. She tells her story with unflinching self-examination, with no attempts to be "inspirational." She shows what it's really like to raise a child with a disability in America, particularly in the uncaring social climate of thirty years ago, some aspects of which persist even today.

LanguageEnglish
PublisheriUniverse
Release dateJan 29, 2002
ISBN9781469757704
Perfectly Normal: A Mother's Memoir
Author

Marcy Sheiner

Marcy Sheiner’s articles, reviews, short stories, and opinion pieces have been published in print and online, as well as in many anthologies. Her short story collection, Love and Other Illusions, was published in 2013 by Rennaisance Books and is available as a Kindle book at Amazon. She has written one memoir (Perfectly Normal, available at iUniverse) and one self-help book (Sex for the Clueless, available at Amazon); collaborated with Brandon Wade on Connecting With the In Crowd (available at Amazon); edited a dozen anthologies of erotic fiction (also at Amazon); and has ghostwritten seven full-length works of non-fiction. She maintains two blogs: Dirty Laundry at http://www.marcys.wordpress.com, and Bookbuster at http://www.marcysbookbuster.wordpress.com.

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  • Rating: 4 out of 5 stars
    4/5
    “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 is a story 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.”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.

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Perfectly Normal - Marcy Sheiner

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