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Perfectly Normal: A Mother's Memoir
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.
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.
140 pages, Kindle Edition
First published January 29, 2002
6 people want to read
About the author
Marcy Sheiner
34 books15 followersBorn in the Bronx. Stuck in California with the New York Blues.
M. Sheiner is also the editor of several anthologies of women's erotica.
M. Sheiner is also the editor of several anthologies of women's erotica.
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Displaying 1 - 3 of 3 reviews
July 22, 2014
“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.
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.
January 22, 2025
The honesty and emotional rawness of this book are powerful. The writing is clear, engaging, and personal; the word choice was intelligent and thoughtful, while at the same time I felt like I was listening to a friend. I started this book two nights ago and I didn't want to put it down. If work and the need for sleep hadn't gotten in the way, I would've read this in one sitting.
This book details a mother's experience raising a child with a disability (hydrocephalus), and I fear that most people aren't drawn to special-topic memoirs unless they themselves are going through (or know someone who is going through) something similar. That's a shame, because this is such a beautiful and honest book. It doesn't require knowing someone with a disability--or even being a mother--to appreciate. (I'm a stepmother, but I don't consider myself deserving of the title "mother." My role is a mix of friend, big sister, and quasi-parent.)
I hate it when people react to other people's suffering by forcing/expecting them to be positive (or by simply avoiding the issue). Other people don't know how to react to undeserved tragedies and it threatens their own belief in a just world, so they want the victim to find meaning in the tragedy (e.g., "Everything happens for a reason!" -- a viewpoint I disagree with and think can be harmful). So not only does the victim suffer the tragedy, but they are expected to cope with it gracefully. If they don't, then other people don't want to be around them and even criticize them for not "seeing the positive side." It's a horrible double burden. Because I feel this way, Marcy's description of how other people reacted to her situation really resonated with me. I appreciated the brutal honesty. It's a rare characteristic, but one that I admire and wish was more common.
As a side note, the parts of the book describing her experience with "consciousness raising" sessions and other aspects of the feminist movement were also really interesting to me. I don't know what I would've done as a young woman in the 60s and 70s. I feel so fortunate to live in an era where my career is just as important as my husband's (in fact, we have the same career). I've had numerous privileges, and I know how fortunate I am. I can choose (and have chosen) not to be a biological mother, and there's no gender role division in my marriage (we cook and clean equally, and I'm even the one in charge of finances).
In sum, I really enjoyed this book and highly recommend it. There is comfort in emotional honesty, even for outside observers.
This book details a mother's experience raising a child with a disability (hydrocephalus), and I fear that most people aren't drawn to special-topic memoirs unless they themselves are going through (or know someone who is going through) something similar. That's a shame, because this is such a beautiful and honest book. It doesn't require knowing someone with a disability--or even being a mother--to appreciate. (I'm a stepmother, but I don't consider myself deserving of the title "mother." My role is a mix of friend, big sister, and quasi-parent.)
I hate it when people react to other people's suffering by forcing/expecting them to be positive (or by simply avoiding the issue). Other people don't know how to react to undeserved tragedies and it threatens their own belief in a just world, so they want the victim to find meaning in the tragedy (e.g., "Everything happens for a reason!" -- a viewpoint I disagree with and think can be harmful). So not only does the victim suffer the tragedy, but they are expected to cope with it gracefully. If they don't, then other people don't want to be around them and even criticize them for not "seeing the positive side." It's a horrible double burden. Because I feel this way, Marcy's description of how other people reacted to her situation really resonated with me. I appreciated the brutal honesty. It's a rare characteristic, but one that I admire and wish was more common.
As a side note, the parts of the book describing her experience with "consciousness raising" sessions and other aspects of the feminist movement were also really interesting to me. I don't know what I would've done as a young woman in the 60s and 70s. I feel so fortunate to live in an era where my career is just as important as my husband's (in fact, we have the same career). I've had numerous privileges, and I know how fortunate I am. I can choose (and have chosen) not to be a biological mother, and there's no gender role division in my marriage (we cook and clean equally, and I'm even the one in charge of finances).
In sum, I really enjoyed this book and highly recommend it. There is comfort in emotional honesty, even for outside observers.
November 6, 2013
This book took me 25 years to finish, and tore out my guts.
Displaying 1 - 3 of 3 reviews