Silverstein's memoir offers a rare glimpse at life as an organ-transplant recipient. She was a young law student when the first signs of a deadly virus in her heart appeared. When her doctor said she merely needed to keep her stress in check and add salt to her diet, she happily complied. At 25, after several months of terrifying symptoms and misdiagnoses, she received a heart transplant. Like all organ recipients, to prevent her body from rejecting her new heart, she depends on high doses of immunosuppressants-bitter "poison" that leaves her nauseous, trembling, aching, and highly vulnerable to infection-for the rest of her life, which was only expected to last another 10 years. To better her chances, she heeded her doctors' advice, sacrificing everything from coffee to alcohol to pregnancy. Still, it seemed that the best she could hope for was the illusion of a normal life, so she kept her body's punishing blows from her friends, her adopted son and at times even from her loving husband, her "ever-confident coach" through years of devastating illness. "[T]o make myself 'normal' again would be the most extraordinary feat that I would never quite accomplish," she writes. Now, more than 17 years after her transplant, Silverstein reflects on the often misunderstood journey through "the torments of being saved" in a stirring story of survival and unyielding love. (Oct.)Copyright 2007 Reed Business Information
Sick Girlby Amy Silverstein
The hardcover publication of Sick Girl garnered tremendous attention, generated impressive sales, and ignited controversy. Both inspiring and provocative, reactions to the book ranged from inflammatory posts on a U.S. News & World Report blog, to hundreds of letters from readers, to a full-page review in People. Amy’s force,/i>/i>
The hardcover publication of Sick Girl garnered tremendous attention, generated impressive sales, and ignited controversy. Both inspiring and provocative, reactions to the book ranged from inflammatory posts on a U.S. News & World Report blog, to hundreds of letters from readers, to a full-page review in People. Amy’s force, candor, and her refusal to be the thankful patient from whom we expect undiluted gratitude for the medical treatments that have extended her life, have put her at the center of a debate on patient rights and the omnipotent power of doctors. At twenty-four, Amy was a typical type-A law student: smart, driven, and highly competitive. With a full course load and a budding romance, it seemed nothing could slow her down. Until her heart began to fail. Amy chronicles her harrowing medical journey from the first misdiagnosis to her astonishing recovery, which is made all the more dramatic by the romantic bedside courtship with her future husband, and her uncompromising desire to become a mother. In her remarkable book she presents a patient’s perspective with shocking honesty that allows the reader to live her nightmare from the insidean unforgettable experience that is both disturbing and utterly compelling.
Silverstein's autobiography draws readers inside her mesmeric human drama of living life as a heart transplant recipient. Make no mistake: the author, an Ivy League-trained lawyer and superb writer with a wry, biting sense of humor, immediately debunks preconceptions about a transplanted heart as a "cure" for a failed one (she was 24 at the time of the procedure). Indeed, she strips away the layers of her 17-year medical "recovery" and reveals her anger toward the "white coats" (as she refers to her physicians), her desire to one day have some semblance of a "normal" life, and her unshakable love for her husband, Scott, and their son, Casey. Silverstein is a natural raconteur with a story so compelling readers won't want to put this book down. Required reading for anyone involved with patient care and essential for the shelves of all U.S. medical and nursing school libraries; highly recommended for all public, academic, consumer health, and other health science libraries.
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By Amy Silverstein
Grove PressCopyright © 2007 Amy Silverstein
All right reserved.
Chapter OneMy heart transplant was there in the lines of my father's palm. Madame Clara saw it right away. She was not just another fortune-teller with a shack along the Atlantic City boardwalk; Madame Clara was a gifted seer (or so her sign said). She knew that a man like my father, middle aged with a fine leather belt and Gucci shoes, along with my stepmother, Beverly, a well-kept blonde with country-club good looks, would be likely to doubt her psychic advice even as they sought it. They were casual drop-ins: the kind of customers who wander in on a lark, husband pushing wife or vice versa, with a playful nudge. "Aw, come on.... It'll be fun." If people like this were ever going to take her seriously, Madame Clara figured they would have to be eased into believing. She'd first have to dazzle my father and Beverly with some facts, things only a true fortune-teller could read in the crisscross lines and intricate folds on the underside of my father's right hand.
"You are in a family business. There is stock involved," she said, offering up the first evidence of her clairvoyance.
"Well, you got me there. Score one for the great Madame Clara!" My father was in a playful mood as usual, ready to challenge the dark-haired woman sitting opposite him with fast quips and charming good humor. "Seems you know me like the back of your hand-or my hand, as the case may be."
She continued intently, her black eyes unwavering. "You have an important deal in the making; it will fall through. Do not feel distressed when this happens. Something bigger awaits you."
"Bigger than a bread box?"
Madame Clara laid her pointer finger on the center of my father's palm and traced a diagonal line slowly, stopping at points to whisper their significance. "Respect. The rewards of hard work. Bounty."
"Await me, right?"
She looked up from his hand. "Yes, but only after a disappointment. You will not get what you have been seeking."
These words had significance for my father. The year was 1984. He was in the process of trying to sell the family business that his father and uncles had started some forty-five years earlier, which had grown to become a publicly traded company on the Stock Exchange. On the day my father offered his palm to a fortune-teller for the first time in his life, he believed he held in his pocket a firm offer from a large conglomerate to buy the business for a share price that was more than respectable. It was an imminent coup; the company had fallen on hard times and my father was one of the major forces to save it, with tough decisions and careful maneuvers that included firing every last family member who had long become a useless fixture. He was not a popular manager at first, but his efforts breathed not only life but unprecedented productivity into the company. To pull off a sale at this point would yield a profit for shareholders, including the cousins he'd sent out the door.
Did Madame Clara just tell him that the deal would fall through?
My father grimaced.
"Oh, Arthur, don't be ridiculous," Beverly said. The sudden furrow in my father's brow told his wife just what he was thinking. She grabbed his forearm and gave it a little shake, followed by a couple of reassuring pats. "Well, for Pete's sake, there must be something else in that hand of his, Madame-ah ... Clara?" She forced herself into a grin but there was nothing cheerful about it; Beverly's expression was flat-out imploring.
It was time to change the subject, and Madame Clara was ready. She had been holding back but would now reveal the prophecy she may have seen and had been reluctant to mention: that one of my father's two daughters would become very sick.
My father had not told her he had any children at all, let alone two daughters; the fortune-teller had hit upon another truth. There was Jodie, who'd just graduated from college, and her younger sister, Amy, who still had two years to go. Both were healthy young women.
"There will be a surgery-a serious one. And a miraculous recovery. The daughter will be okay."
"Splendid," my father said. "Next time, let's stick to the collapse of my business deals. It's more fun."
Madame Clara shrugged. "I see what I see-dark and light."
"Maybe I should have washed my hands first," he said. My father reached into his pocket for a twenty dollar bill and handed it to Madame Clara with a wink. "Thanks for the memories!"
Or at least that's how I pictured it. My father had recounted his fortune-teller story so many times it ran like a movie in my head. The first time I heard it, Madame Clara's prophecy about the sale of the family business had already come true: the original deal had fallen through just as she said it would, only to be replaced several months later with a different buyout arrangement for nearly double the price. Dark and light-that's what she'd told him. Oh, she was right. Madame Clara was the real McCoy. What a story!
And what a nightmare: there had also been a prediction about an illness. My father had to keep this part quiet and hope with every bit of the skeptic still left in him that it would not come true. But the amazing Madame Clara had turned him into something of a believer. The best my father could do was push the sick daughter prediction to the back of his mind, stay silent about it, and wait for the passage of time to prove that the fortune-teller's insights had been imperfect.
Three years later, illness hit me hard and fast; I would undergo the serious surgery that Madame Clara had foreseen. My sister, Jodie, would remain healthy. In time, I would move on to a recovery that was every bit the miracle that had shown up in my father's palm. But the fortune-teller had also said that I, the sick daughter, would be okay; this part of her prediction was flawed. While I would, in fact, survive for a surprisingly long time after surgery, nothing about living with a fragile heart would ever be okay with me. This is not to say that Madame Clara was wrong. She was, after all, reading my father's palm, not mine, so whatever she drew from it would naturally reflect his perceptions and experiences to come. My father, like nearly everyone else in my life, would always see me as okay in my post-surgery body. Perhaps Madame Clara had not misread his future at all.
But she'd misread mine. Months before I would sense the first inkling of a heart problem, I took a short trip to Atlantic City with my boyfriend, Scott. On my suggestion, we sought out Madame Clara's shack on the boardwalk and there it was, right where my father said it would be. Scott was reluctant to go in. The whole fortune-telling thing gave him the creeps, he said, even while parting the glass beads that served as the door to the reading room. As Scott took his first tentative step inside, I reached down and pinched his butt cheek, hard and quick. Into the air he flew, with a gasp.
"And I didn't even have to yell boo!" I teased.
"I'll show you boo!" He spun around and grabbed the sides of my waist, squeezing in spurts that brought me to breathless laughter within seconds.
Madame Clara emerged from behind a makeshift curtain and sat, annoyed, behind her crystal ball. I squirmed out from Scott's clutches and brought the fun to an end, knowing I was in the presence of the great seer who'd predicted, with amazing precision, the fate of my family's business. It excited me to think of what she might say about my own destiny; I'd just finished my first year of law school at NYU, and I was in love-real love-for the first time.
I offered up my palm. This had to be good.
Madame Clara fell silent. Her eyes went soft and out of focus, almost as if she were refusing to look closely into my hand.
I felt the urge to help her along. "Um ... will I have children?"
"I see four," she said.
"What about health?"
She turned my hand over and patted the top of it. "Health looks good. You will live a long life."
This was the end of my reading with Madame Clara. She charged me only five dollars; it lasted less than three minutes. Scott kept his palm to himself.
A good fortune-teller is focused on the hand in front of her. Hands contain lines; they are simple to read. But faces-especially young attractive ones-are more complex. And when they're attached to lean, youthful, unblemished bodies, faces can be misleading. Even obscuring.
The diagnosis of my illness might have come about differently had my family doctor studied a little palmistry. Or maybe if he'd closed his eyes and just listened to what I was telling him instead of being blindsided by the pretty first-year law student sitting on the exam table wearing nothing but a light blue hospital gown. It does not take tremendous beauty to throw an Ivy League-educated physician off the scent of a menacing illness. It's the coming together of circumstances that will do it-with or without a mane of long wavy hair and a perky bosom. Take an admittedly studious, overachieving twenty-three-year-old woman at a highly competitive law school; give her tightness in the chest and a couple of episodes of passing out; send her to the doctor's office, cheerful and bright-eyed, with a bounce in her step; and have her giggling at his jokes and at the first touch of the cold stethoscope on her back. Together, these can be enough to make any doctor assume, at first blush, that there is nothing terribly wrong with this young woman.
Dr. Clark gave me the obligatory exam. He looked into my eyes with a light and my ears with a scope. He asked me to touch my nose and walk in a straight line. Then, after listening to my heart for a few seconds, he mentioned casually that he'd heard a slight clicking that I "might want to get checked out sometime." He was thinking mitral valve prolapse, a generally benign condition that could possibly explain the sound he'd heard. Then he took my blood pressure; his eyebrows shot up almost to his hairline. "Wow, that's low!" he said.
"Aw ... what's too low?"
I didn't know what was too low. That's why I was asking.
"Could it be why I've been passing out?"
"Sure! You should salt your food. Lots of salt. Salt it all, if you like." He told me I should consider myself lucky to be one of the people who didn't have to feel guilty when they reached for the salt shaker. Dr. Clark was an old pro at seeing the bright side.
Later, in his office, with me now dressed in my street clothes and sitting opposite him across a paper-ridden desk, my doctor pronounced me well, saying he couldn't find anything wrong except the low blood pressure. The stresses of law school were getting to me, he said. That's all it was. He gave me an empathetic "It's tough the first year, isn't it?" followed by "But not too tough for a girl like you, I bet!" Then, just before I slipped out the door, Dr. Clark held his arms out to me, just as he did for all his patients, and I knew I was in for one of his signature bear hugs, with that barrel chest of his so solid against me it hardly seemed to yield at all to the pressure of body against body. His hugs had been taking my family's breath away for years; and today especially I was glad to have the familiar comforts of Dr. Clark so close by-at New York Hospital, just a fifteen-minute cab ride from my law dorm at NYU.
On my way back downtown I bought a large blue container of Morton's salt and poured a good-sized mound of iodized blood pressure lifter into my palm. I licked it off in one swipe; I really didn't want to pass out again. But I did pass out again. And again-in the shower, waiting for an elevator, brushing my hair by the mirror. I didn't call Dr. Clark to tell him his salt cure was not working for me, and I never went to have that little click checked out either -not even after I started vomiting blood. I felt at fault for these body symptoms and was embarrassed that I couldn't bring my stress level down to the point where they would just disappear. Dr. Clark had told me I was healthy, right? I could only blame myself for not feeling well. Nervous law student. Must calm down. Eat salt.
I would look back on the early stages of my illness and wonder how many other young women had ever stared into a toilet bowl full of their own blood-streaked vomit, flushed it down, and dashed off to a two-hour seminar in Constitutional Law. Probably none. My brushing aside of symptoms was uniquely stupid. There must have been something-what was it, what was it?-that led me to ignore the obvious. Only in retrospect would I recognize that it was youth, coupled with the absence of serious childhood illness, that could dull down the medical-danger radar in a girl to the point where peril hardly registered at all. Add to this an obliging physician with the same defective detection system, plus a penchant for the jolly, and what you've got is a recipe for massive denial that cooks up into a ticking time bomb.
Back in Dr. Clark's office one year later, I would find my blind optimism blown to bits. This time my symptoms were different and more serious: I couldn't breathe. But strangely enough this was not the main focus of my complaint. It was more my chest that was the problem, or so I believed. It felt heavy and uncomfortably full, as if I'd eaten three years worth of Thanksgiving dinners in one sitting. I told Dr. Clark that there seemed to be something wrong with my stomach; food didn't want to go down. It felt worse at night when I lay in bed. I'd even heard a gurgling deep down in the center of my chest-like there was water in there or something. "My digestion isn't right. I feel it here," I said, placing my hand over my left breast without the faintest appearance of worry. There was nothing about my twenty-four-year-old life that would prompt me to make a connection between the location of my hand and the heart that lay beneath it.
The heaviness in my chest turned out to be due not to poor digestion, as I'd thought, but rather to a grossly enlarged heart that was literally bursting out of me. And the gurgling sound I'd heard? That was water in my lungs. I'd been listening to it night after night as I lay in bed, a crackling that came with each exhalation; it didn't scare me at all. I figured it must be part of that food "caught in my pipe." Such simple words and innocent explanations came naturally from a young woman who hadn't been sick since her childhood ear infections. I was understandably naive. My medical vocabulary was nonexistent and my self-diagnostic skills immature. Pipes and stomach trouble-that was the best I could come up with. My imagination could only go so far as a bellyache.
But Dr. Clark was probably able to conjure up a range of possibilities-and perhaps one horrifying probability-from the obvious severity of my symptoms. A quick step up on his scale showed I had gained eight pounds since weighing myself at home two days earlier (a sure sign that my body did not have the strength to expel water as it should). A blood-pressure check proved that a whole year of salting my food hadn't helped my numbers to rise one bit. An external palpation of my abdomen was normal except for one troubling discovery that had nothing at all to do with my digestive system: I wasn't able to catch my breath while lying down on the exam table. Even before he put his stethoscope to my chest, Dr. Clark had an idea of what he was dealing with, although he could hardly believe it. From what he'd seen so far, the young woman on his exam table seemed to have congestive heart failure, a disease found mostly in the elderly or in middle-aged people who'd suffered several heart attacks. A diagnosis of this disease usually meant that at least some portion of vital heart muscle had been damaged beyond repair.
The cause of this damage varied case to case in congestive-heart-failure patients. Dr. Clark could not imagine what might have been the cause of mine, but at the moment it didn't matter: left untreated, congestive heart failure could be fatal.
It must not have been easy for him to put his dark suspicions to the final test. "Let's take a listen," he said.
I opened the front of my hospital gown and lifted my chin into the air. Dr. Clark leaned his head toward me as he concentrated on the sound of my heartbeat. It didn't take long for him to realize that the little click he'd heard only one year earlier had turned into an ominous thud. Instead of the bright sounds doctors typically hear when listening to a healthy heartbeat, there were gallops-spurts of effort followed by a run of chaotic aftershocks-and then a short period of tortured lumbering. Dr. Clark knew he had just listened in on a sick heartbeat that was out of his league as a general internist. "Why don't you get dressed and meet me in my office. We'll talk, okay?" he said, without a hint of anxiety. It was important not to get me upset or excited-not with the way my heart was beating today.
Excerpted from Sick Girl by Amy Silverstein Copyright © 2007 by Amy Silverstein. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Meet the Author
Despite a ten-year prognosis, AMY SILVERSTEIN’s new heart has been beating strong for over twenty years. She is on the Board of Directors of UNOS (United Network for Organ Sharing) and lives with her husband and son in New York.
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It's not often that I enjoy a book so much that I feel compelled to write a review. "Sick Girl", however, is an exception. I can't put my finger on exactly why, but once I started reading this book, I couldn't put it down. I stumbled across it while browsing in Barnes & Noble. Intrigued by the title and cover art, I picked it up and started reading it right there in the aisle. By the time I got to chapter 3, still standing in the memoir section, I'd decided to buy it even though I was already in the middle of two other novels. It only got better once I got home and continued reading. I am astounded by the reviews from other readers calling Amy whiny, self absorbed, bratty, etc. Apparently none of these reviewers have ever dealt with a life altering illness or the burden of other peoples' expectations that all will be fine once you're "better." As someone who battled a terrifying and life threatening illness at an age even younger than Amy Silverstein (9 years old to be exact), I know what it's like to feel like your youth has been stolen. I know what it's like to put on a happy face for family and friends who think everything is okay when inside it feels like you're still dying. I was going to recommend this book to any book lover. But perhaps that is a misguided idea. If you are going to judge the author and every meltdown she has, you'll get nothing out of this book. But anyone willing to read "Sick Girl" with an open mind and heart will surely enjoy it as much as I did.
This book definately opened my eyes to the truths behind congestive heart failure. I have known many people who have had and died from this disease and had no idea what they went through. From the hospital stays to the dangereous infections that seem so minor to healthy people. I have the utmost respect for those who have to go through this!
Amy does a very good job taking you through the steps along the way to transplant and all the emotions accompanying each step. As I read her story, I was amazed at how closely it detailed my own story, nearly 20 years later. I am also a young woman of Jewish decent with the identical congenital heart defect that was also exacerbated by a virus that evenutally led to my need for a heart transplant. But Amy was 25 in 1988 when she had hers, and I was 35 when I got sick in 2003. Ironically, I was also just about to start law school as well. Given the similarity in our backgrounds, the story really touched me in a deeply personal way. I understood every step of her struggle, recognized the authentic emotions she channeled onto the pages. Even her despair was palpable to me. Really, the only thing close to a complaint that I might have is how she defines each medical procedure as a "trauma" or "violation" of herself. Each of these procedures is necessary to be a successful transplant recipient, and Amy is the definition of that success with 22 years of survival already. I should be so lucky. I recommend this book to anyone whose loved one has undergone any transplant, but especially a heart transplant. It exposes that inner pain and anxiety that we all try to hide behind the "everything is okay" smile. It addresses the issue of having an "expiration date" that you can't find on your carton but you know it's there and someday it's going to get you. I also recommend this to anyone in the business of caring for transplant patients - nurses, doctors and coordinators. There are a 1,001 books devoted to the caring for the body. This one addresses the soul. Good Luck Amy! In another 20 years, I want to see a book about your experiences as a grandma!
Forget everything you thought you knew about heart transplants..... Amy Silverstein's personal journey through heart disease, heart transplant and "recovery" is a tough but very worthwhile memoir that compels the reader to experience the day-in-day-out relentless fight for survival of the heart transplant patient. Just when you feel so weary of her daily routine to continue living that you want to put the book down, you consider the tenacity of this woman who never gets to take a break from it. It's an insiders look at doctors who don't have all the answers and don't always honestly give information when they do, of health care workers who get jaded by routine, and friends and family who struggle with being supportive over time with someone who will never get a break from her struggle. Yes, it's a hard story ~ but when Amy finds her voice, you're glad you are there.
The cover of "Sick Girl" grabs you. Not only does it appear to be a compelling, inspirationl, and touching story of a medical nightmare, but you truly feel that after reading it, you'll be grateful for your own health. But no - not even close! I finished sick girl, but with dread. The begining of the book paints a portrait of a girl raised to not deal with conflict, to keep emotions buried, to avoid conflict and completely ignoer any kind of communication whatsoever. Because she is raised like this, she becomes a complete brat after her diagnosis. The book is an entire pity party, nothing but her complaining and throwing monster sized temper tantrums about every little detail. The amazing thing is that she continues to receive support and love by those around her, but she completely ignores it. How her husband managed to stay with her is beyond me - I can say quite certainly that had I seen the nasty side of my husband, he would have been in serious therapy if he wanted out marriage to continue onward.
I have read the comments...I have read the book...I AM the mother of a child who is over 11 years post-heart transplant. Ms. Silverstein offers a realistic journey into OUR lives. I couldn't put the book down till I was finished reading it completely. I cried, I grieved, and then I knew that IF my child was ever in need of a second transplant - well, it would be very selfish of us to ask that she go forward unless SHE wanted to - pity, I think not, ungrateful - never. It amazes me how little "others" really understand the complexities that come with transplantation and the importance of understanding the dynamics of immunosuppression when related to other fields of medicine. It surprises me that there is very little clinical support in place for transplant recipients AFTER they are given this wonderful gift of life. "Off you go!" "Live!" I wonder how many are aware that many additional second transplants might have been avoided IF there was clinical support regularly in place say with annual studies? But few transplant centers have "real" clinical support in place because the funds are not available. Let's not pass judgement on something we don't live with - even if we are academically knowlegable - until you experience it AND live it. Thank you Ms. Silverstein - I was thankful to connect through your experiences - PTLD is a word we never want to hear...And I have passed your book to as many as I can so they might have a tiny glimpse into our world - real.
As as a healthcare professional, I have had many opportunities to work with chronically ill patients including post transplant patients & immunocompromised patients. I have never come across a more self-absorbed, childish, ungrateful, whining, self-pitying person. I found the details of her experiences to be far-fetched & exaggerated. Perhaps she could not recognize the empathy of those around her. She failed to realize the things in her life for which to be grateful. The pity I feel is more for her husband & her dedicated healthcare providers who put up with her ridiculous attitude! Perhaps she should consider if she had not have been fortunate to have received a healthy heart - many a patient would have traded places with her in a heartbeat.
I can't imagine living through and living with what this strong beautiful woman endures. At the same time this book will keep you on the edge of your seat like a horror movie!
What a sad story. Given her background, Amy was ill-equipped to deal with difficulty- never mind sudden illness and the challenges that follow a transplant. As an example of her family dynamics, Amy expresses her fear and anger after finding out about her terminal illness- and her father promptly stops the cab and leaves! I guess sharing and communication is just not a strength in her click. Toward the end of the book, Amy is shocked to find out 17 YEARS LATER that her husband was actually afraid while she was going through the surgery and recovery. Duh! It seems that she could not stop thinking about herself for long enough to figure that one out. Unfortunately, I would also have to agree with the other reviewer that called this a 'pity party.' Amy throws several tantrums and even THREATENS SUICIDE because she cannot bear taking her medicines any longer. It turns out, she is on meds that are three generations old and- when offered the chance to change over to new, more effective drugs with less side effects, she declines. I can only conclude that she enjoys being miserable. I, too, got sick of hearing it. When I heard about this book, I thought it would be powerful- living 19 years after a heart transplant with a husband and a child has to be an uplifting story of great courage and hope, right? I was wrong. Unfortunately, this poor woman is emotionally stunted and chooses to spend her life feeling sorry for herself, torturing others and belaboring what she lost. Most of the time I was reading the book, I just felt angry. I can only hope for Amy that something in her future life's path will help her see the joy in living and all the opportunities for personal growth that come with illness 'IF you choose to acknowledge them'. If someone is interested in learning about the negatives related to illness or transplant, this may be a good read. If someone is seaking a mentor/guide through the mental and emotional challenges of illness, I would highly recommend the book 'Sick Girl Speaks' by Tiffany Christensen. I think Tiffany's book 'Sick Girl Speaks' provides a great, constructive and hopeful model for patients, family members and medical professionals alike.
It's one big pity party, and I for one wish I had not attended. Don't waste your time or effort on this book. It is nothing more than a few hundred pages of whining and complaining by a very spoiled person who is overwhelmingly negative and angry.
Her true story is honest, amazing,frightening,sad, triumphant, and courageous. Her writing is simply beautiful.