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Lunch » Tags » Books » Reviews » Rachel in the World: A Memoir » User review

So Much, for a Piece of Toast!

  • Sep 6, 2010
Rating:
-3
Pros: Rachel's goal is ultimately accomplished...

Cons: But not without heartache on the part of mother, daughter, and readers.

The Bottom Line: You want rage to usurp the pain, but it doesn't. You want to stop mourning, but you can't. You want to help, but it's too late...

     “Ma? Ma? Can I have tea? I want tea with sugar. Ma? Can I have tea? Ma? Can I have cereal? Can you please help me with my sweater, please? Ma? Ma!?”

     This is your daughter. Logically, you understand why she constantly demands the attention, never drinking the tea you set before her and keeping up a continual stream of talk. You know that much of what she says has no meaning to her--that it is pure mimicry of others’ speech. You’ve seen the therapists, worked with the doctors, heard the prognoses. Rachel has hypo-optic dysplasia, a condition resulting in visual impairment and cognitive impairments. You comprehend these things, yet you’re still frustrated. Can’t you ever read the newspaper without these endless questions? If the entire newspaper is too much to ask, what about an article--just a few pages? But no--even as you reach for the plastic-wrapped news, you hear it: “Ma? Can I have cereal?”

     At least, these are your thoughts if your name is Jane Bernstein, author of Rachel in the World. This sequel to Loving Rachel is a Naturalist portrait of raising her daughter. Naturalists were known for painting things as they were--warm country kitchens, raggedly-dressed children with bleak prospects, rundown cottages--mostly the more desperate aspects of existence. So, too, with Rachel in the World.

     “And if my name is not Jane Bernstein?” you ask. If that be the case, as I rather hope it is, then be prepared to grieve--not to weep over a fictional book, but to ingest the trials and traumas of a severed relationship.

     Relationship--where does it begin? Bernstein held that it begins in early childhood, when parents are still attempting to discover who their children really are. The trouble is, very little could actually be learned about Rachel. At five, “Rae-Rae” was a docile child who seemed neither pleased nor perturbed until her first experience in the water. Swimming seemed to thrill her, with its normalizing tendencies and toning abilities... Wait! Who am I discussing--Rachel or her mother? Throughout this chapter, Bernstein demonstrates the many characteristics of hydrotherapy that might, in fact, be satisfying to a child of Rachel’s ability--the entertainment, the socialization, the independence. Yet, even after Rachel suffers several prolonged seizures in the water, Bernstein insists on taking her daughter anyway--no longer for Rachel’s benefit, but for her own. Rachel must participate as one of the family--she must! So begins a protracted struggle to “normalize” Rachel while simultaneously keeping her at a distance. After all, whoever wants a child constantly tagging after you and talking about tetrazini?

     So Jane Bernstein thinks, asks, proposes. When she is not taking her daughter to evaluations, leaving her at the local community center, or enrolling her in classes for mentally-challenged children, she is trying desperately to escape Rachel. Yet, Rachel struggles to attach to her mother. So it is that Jane’s weekends are spent in fruitless attempts to write while also trying to distract her young daughter. Rachel’s cognitive difficulties, paired with her lack of sight, render this a challenge.

     With the passing of the years, Jane’s views of Rachel become more caustic. When a hormone therapist and family friend suggests that the tiny Rachel be treated with hormones that will allow her to develop physically, Jane writes something akin to, “I’ve just adjusted to a little retarded kid. Now, I’ll have a big retarded kid.” These are her terms and, while it sickens me to write them, my readers should know what they will be reading should they choose to become involved with this book.

     Then, there’s Rachel’s own desires to be considered. It’s not always easy to distinguish true desires, since Rachel often repeats what she hears others say without comprehending. “I want a driver’s license. I want to go to college,” she remarks when she sees her friends preparing for independence. Yet, her cognitive functioning does not allow for such neurotypical ventures. One thing that Rachel does want is an apartment of her own. Tired of Jane Bernstein’s constant nagging--“You can’t wear a sweatshirt to school. You’ve already worn it. It’s summer. Put on a different shirt”--Rachel is quite vocal about her desire for freedom from parental conflicts. And, of course, Jane wants to be rid of her daughter as quickly as possible. Upon hearing that insurance will not facilitate Rachel’s moving into an assisted-living environment, she pens an angry letter: “If you don’t take Rachel by June 1, 2005, I will leave her on your doorstep!”

     If this were fiction, as I wish it was, I would end by asking a series of intriguing, rhetorical questions. “Will Rachel find her apartment? Will Jane find the love of her life in a romance with Solitude? Will the partners in crime against kindness be able to escape undetected? Will the police figure out who murdered Loyalty before it’s too late?” I’d end with a teasing, “Read the book to find out!” I’d shed a few tears, then go on my way knowing that this is, after all, “just a book”.

     Alas! This is not a lightsome novel. We don’t have hero and heroine, and I can’t warn you about poor character development or implausible situations. This is nonfiction--grievous truth that actually left me on the verge of tears, so cruel are the comparisons. The next few paragraphs may break your heart, so you may wish to avoid them if you’re feeling particularly sensitive. Please note that all of the following are paraphrases, since finding the actual quotations would take some time. However, the important words--animal, fridge, normal, baby, etc.--are Jane’s personal property.

     While Jane searches for a place to kennel her daughter--first in Israel, then in various living facilities in the United States--she keeps up a running commentary on Rachel’s behaviors. First, she observes Rachel’s class while the students are making toast. Take out the bread, put it into the toaster, turn on the small oven, decide what you want on your toast (butter? Jam? Honey?), wait for it to be done, find an oven mitt so you won’t be burned, take out the toast... Should you use a knife or a specialized spreader? So much for a piece of toast!

     While Jane enjoys this perspective, all is well. When, however, she is faced with the difficulty lurking at her own door, she becomes less loving. Each morning, despite Jane’s remonstrances not to awaken anyone until Rachel’s alarm goes off, her daughter awakens her with a series of requests. “Ma? Can I have cereal? Ma?” Sometimes, Ms. Bernstein punishes Rachel by giving her toast instead--a food she does not particularly care for. Could it be--just possibly--that Rachel is afraid of something--the dark perhaps? Could it be that she misses her mother and can only see her in the wee hours of the morning before being toted off to a community center? Why does Rachel do what she does? Yet, Jane never pauses to investigate but instead chooses to punish a child who literally has no understanding of cause/effect relationships. She cannot understand her mother's need for sleep; she is simply incapable of following "quiet time" directions.

     Sometimes, Rachel simply gets in bed with her mother. Keep in mind, you’re reading the account of a two-year-old mind in a seventeen-year-old frame. Let's examine what happens, shall we? 

     Jane: “I tried to tell myself to be nice, but she was kicking and scratching. She was like a little animal.”

     While dealing with breakfast issues: “She loved breakfast. I can imagine what she was thinking--“Oh, darling breakfast! How do I love thee?””

     Listening to Rachel’s request for a bottle of water that she may not drink, but that she enjoyed having in her possession: “She wanted that water as much as a normal person wanted a baby or a house.” That day, too, instead of buying Rachel some water, Jane compelled her to walk around town and only reluctantly bought her something to drink.

     And finally, in a moment of celebrating silence: “...after I had pushed my daughter out of the house. It was like trying to move a fridge.” Is that the way we remove our children from our houses--not with farewells, but with physical force?

     Rachel was essentially no more than “the family business”. Jane recorded her duaghter to use “funny” quotes in her writing, while Rachel’s older sister made a none-too-flattering documentary about Rachel’s life. I’m not sure whether to e enraged or to crumble into a mosaic of fallen, jagged pieces.

     Even Rachel’s ultimate liberation from this hostile environment provides little comfort. Rachel’s repetition of familiar words and phrases leads her to make angry remarks in the tone and style of her mother: “Why don’t you leave me alone?” or, “Just go away!” Although Jane insists that she understood little of what she said most days, surely some sentiments were real. Though she couldn’t understand the meaning of “driver’s license”, we all know what anger and hurt are. Suppose that Jane had filled her speech with “I love you” and “you’re special”, allowing each word to serve as encouragement? Would Rachel have emulated this, too? Though she now knows nothing of how to love, might she have learned under different tutelage?
     Too, the word “retarded” makes a frequent and unwelcome appearance. I’m not sure that this was ever a kind term--used in the medical community, perhaps, but not compassionate. In the nineteenth century, children were also diagnosed as “idiots”--the correct scientific term for the era. Does this make it appropriate for me to make the designation during the twenty-first century?

     And what of Rachel’s unnerving behaviors--her constant attention-getting strategies, her inappropriate enthusiasm with strangers, her often-nonsensical chattering? I’m not a psychologist, and I don’t play one on TV. This, though, I have learned: In Parenting the Hurt Child, Regina M. Kupecky and Gregory C. Keck identify various symptoms to be aware of in struggling children:

“* Superficially engaging and "charming" behavior
* Indiscriminate affection toward strangers
* Lack of affection with parents on their terms (not cuddly)
* Little eye contact with parents (on parental terms)
* Persistent nonsense questions and incessant chatter
* Inappropriate demanding and clingy behavior
* Lying about the obvious
* Stealing
* Destructive behavior to self, to others, and to material things (accident-prone)
* Abnormal eating patterns
* No impulse controls (frequently acts hyperactive)
* Lags in learning
* Abnormal speech patterns
* Poor peer relationships
* Lack of cause-and-effect thinking
* Lack of conscience
* Cruelty to animals
* Preoccupation with fire“
       --Kupecky and Keck, pp. 27-28, italics mine.)

     Emphasized symptoms are all characteristic of Rachel. Do you know what this indicates? Reactive attachment disorder! RAD, as it is often known, generally occurs in children who have been physyically or emotionally abused or neglected. Certainly, many of Rachel’s individual behaviors likely arose from her cognitive challenges, but the fact that her symptoms so clearly mirror those of RAD is rather alraming, wouldn’t you say?

     All of this would be tolerable--albeit ever so slightly--were the writing engaging. In this work’s predecessor, Loving Rachel, the writing was warm and descriptive, with rich details woven among captivating emotional patterns. Not so with Rachel in the World. The book consists of sixteen chapters that each open with a quote from therapists, taped dialogues between Jane and Rachel, etc. Next come the complaints--a monotonous series of them--with little outside detail to interrupt the flow. When I shared some of the text with my own loving mother, she was horrified and agreed that neither the writing nor the author’s character rendered the book accessible to a broad audience.

     In a previous review, I shook with rage at the treatment of a fictional little girl. Now, I can only sag with weary sorrow, wondering how such a child as Rachel could have been left in the care of Ms. Bernstein, how social services did not intervene, how therapists did not diagnose Rachel as being inappropriately detached--how, how, how... I am too agrieved for anger, too dismayed to plaster this with one star. One-star reviews are reserved for wrath. But what do you award something that merely causes you a deep sense of hollow mourning—three stars? You can’t do that either. I’ve read several positive reviews in which this author was acclaimed for her forthrightness, but I cannot agree with the majority. It would be a challenge—I shan’t deny it. But let’s imagine a different scent, one that I will never have the opportunity to enact:

     “Nicole! Nicole! Can I have some cereal? Will you please help me with my sweater, please? Nicole! Nicole, I love you, Nicole.” (Ah, she can be taught.) “Nicole, can I have tea? Nicole, I want some toast. Nicole!”

     Just a minute, Rae-Rae, I’m coming...

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Nicole ()
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I am, first and foremost, defined by my faith in Jesus Christ. All else is secondary. I am passionate about writing; this is akin to worship, and I strive daily to use this gift to glorify Him.   … more
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In LOVING RACHEL, Jane Bernstein wrote about the challenges of raising a mentally-disabled child. Now, nearly a decade later, she describes how those challenges only mounted as Rachel grew up from a babbling baby into a blind undersized young woman. The story of Jane's determination to give her daughter an independent life, and the excruciating obstacles faced by both mother and daughter, result in an painful yet inspiring tale.
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Details

ISBN-13: 978-0252032530
Author: Jane Bernstein
Genre: Psychology, Biography & Autobiography, Social Science, Family & Relationships
Publisher: Univ of Illinois Pr
Date Published: August 13, 2007
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