Grove Press
Grove Press
Grove Press

Sick Girl

by Amy Silverstein

“[Sick Girl] shocked me. It was a revelation. I couldn’t stop reading it. . . . It’s a book that made me shake my head in disbelief with every chapter. What a potent reminder it was that quality is about more than walking out of the hospital alive.” —Avery Comarow, U.S. News & World Report

  • Imprint Grove Paperback
  • Page Count 320
  • Publication Date October 13, 2008
  • ISBN-13 978-0-8021-4387-7
  • Dimensions 5.5" x 8.25"
  • US List Price $17.00
  • Imprint Grove Hardcover
  • Page Count 304
  • Publication Date October 16, 2007
  • ISBN-13 978-0-8021-1854-7
  • Dimensions 6" x 9"
  • US List Price $24.00

About The Book

A fierce and provocative account of a twenty-four-year-old law student’s astounding medical journey to obtain and sustain a new heart, in the midst of a double decade romance that reads like a true-life version of Erich Segal’s Love Story.

An incredible journey into the life of a young heart transplant patient, Sick Girl is extraordinary both for its gripping story of a medical miracle and for its unique and forceful narrator, Amy Silverstein.

At just twenty-four, Amy Silverstein was your typical type-A law student: Smart, driven, and highly competitive. With a budding romance and a heavy academic schedule, Amy did not have time for illness—especially not one that caused her heart to pound violently and erratically in her chest, for her to black out, lose her breath, and even suffer temporary blindness. When her family doctor suggested that her symptoms were due to stress and diet, she was more than happy to drop a few classes, think calm thoughts, and eat fistfuls of salt. At such a young age, how could she have guessed that her heart was about to give out?

With a grace and force reminiscent of Lucy Grealy’s Autobiography of a Face or Susanna Kaysen’s Girl, Interrupted, Amy Silverstein—a surprisingly irreverent narrator—chronicles her harrowing medical journey from the first misdiagnosis to her astonishing and ongoing recovery. Her memoir is made all the more dramatic by the deliriously romantic bedside courtship with her devoted boyfriend, Scott (now her husband), and her uncompromising desire to become a mother.

Distrustful of her doctors and insistent in her refusal to be the “grateful heart patient” she is expected to be, Amy presents a patient’s perspective that is truly eye-opening and sometimes controversial. Amy’s shocking honesty and storytelling skills allow the reader to live her nightmare from the inside—an unforgettable experience that is both painfully disturbing and utterly compelling.


“[A] raw, often angry voice that comes through in her painfully honest narrative.” —Kirkus Reviews

“Feisty, insightful, improbable . . . Silverstein has cheated death to thrive in her post-transplant existence and to write about it with incredible courage, determination, self-scrutiny, and verve.” —Lisa Shea, Elle

“[Silverstein’s] unsentimental humor and spitfire response to mortality help [her] deal with a ‘time-bomb heart’ that has kept on ticking for nineteen years. With apologies to Adlai Stevenson, it’s not always better to light a candle; sometimes you need to curse the darkness, too.” —Cathleen Medwick, O, the Oprah Magazine

“[Sick Girl] shocked me. It was a revelation. I couldn’t stop reading it. . . . It’s a book that made me shake my head in disbelief with every chapter. What a potent reminder it was that quality is about more than walking out of the hospital alive.” —Avery Comarow, U.S. News & World Report

“[A] compelling memoir . .. Silverstein’s humor and devotion to her husband and son see her through, and by the end you’ll be rooting for her next 20 years.” —Kim Hubbard, People (3 of 4 stars)

“[A] mesmeric human drama of living life as a heart transplant recipient . . . A superb writer with a wry, biting sense of humor . . . Silverstein is a natural raconteur with a story so compelling readers won’t want to put this book down.” —Maura Sostack, Library Journal (starred review)

“Unsparing . . . the life of a heart transplant patient is an intricate, often frustrating duet with impending death. It sometimes seems that memoirs already have detailed every possible affliction and condition, but Silverstein’s tills new territory.” —John Marshall, the Seattle Post-Intelligencer

“Read this and promise us you’ll never whine about having a cold again.” —Colleen Oakley, Marie Claire

“Brave and candid.” —Glamour

“[A] tour de force memoir.” —Good Housekeeping

“A grueling, ultimately uplifting story of endurance.” —Kristin Kloberdanz, Chicago Tribune

“[Sick Girl] is frank and honest and spares no one.” —Ian Munro, Sydney Morning Herald

“Sets the record straight about a so-called medical miracle.” —Kirkus Reviews

“Truly compelling, Sick Girl sucked me in from the get go. Amy Silverstein’s story is amazing and inspiring.” —Mary Roach, author of Stiff and Spook

“Amy Silverstein is not an easy patient, with good reason. She has lived nineteen long years with a transplanted heart; much longer than any doctor could have predicted. And she has, arguably, done more with a transplanted heart than anyone else, including the publication of this remarkable book. It documents her fears, frustrations, anger and perseverance. She recognizes that the world expects a simpering bundle of gratitude. In her compelling memoir, Sick Girl, Amy delivers a searing insight into the arduous and often depressing battle to stay alive. And yet, there is also love and humor, and a radiant courage.” —Ted Koppel

“Heart transplant patients live along the jagged edges of the abyss that most mortals fear. By bravely peeking over the edge, Amy Silverstein shares with us the brutal reality of being a survivor.” —Dr. Mehmet Oz, Cardiologist, co-author of the best selling series YOU: The Owner’s Manuel and Professor and Vice Chairman of Surgery at Columbia University

“Silverstein is an inspired storyteller. Her engaging language and sharp insight make Sick Girl both compelling and moving. Few of us undergo a heart transplant at twenty-five, but we can recognize our own stories in this incisive, unflinching look at life, love, and extraordinary courage.” —Susan Cheever, author of Note Found in a Bottle and American Bloomsbury

Amy Silverstein on CBS This Morning


Winner of the 2007 Books for a Better Life First Book Award
2007 Borders Original Voices Non-Fiction finalist



My 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.

“Too low?”

“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.

When I walked into Dr. Clark’s office he was already on the phone. He smiled and gestured for me to take a seat. After finishing one phone call he immediately went on to the next and then the next. Each time he brought the receiver to his ear, he’d hold up a finger to let me know that he would be just one more minute; just one more phone call and then I’d get that talk I’d been promised. I looked on as Dr. Clark reached up again and again to rub the back of his neck, beginning each new phone call with an audible exhalation and a plea: “Can you do me a favor here?” He was trying to arrange for me to have tests done immediately, even though it was past five on a Friday night.

“There, now we’ve got it,” he said, handing me a sheet of paper with locations and times written on it. “I need you to go do these tests for me, if you would.”

“Tonight? Now?”

“If you would, please. I just want to check a few things out, okay? Go now, dear. Come back and see me when you’re done. I’ll wait here in the office for you.”

“But won’t it be late? It’s Friday night.”

“Doesn’t bother me a bit; I have a lot of paperwork to tackle. Don’t worry yourself about me.”

“All right, as long as you don’t mind,” I said, gathering my things together and heading for the door. I thought it was awfully nice of Dr. Clark to hang around just for my stomach problem.

“Some of these testing places are a couple of blocks away from here. You’ll have to do a fair amount of buzzing around. So please, dear . . . walk slowly.”

I lingered beneath the door frame for a moment. “Sure, okay,” I said.

I did not notice until after I’d spun through the revolving doors of the hospital and out onto the street that I had left Dr. Clark’s office without a big bear hug. He’d remained seated for the first time ever, elbows on the desk, fingers massaging both his temples. I thought I saw him reach for the phone again as I walked out.

My visit with Madame Clara predated the fateful appointment with Dr. Clark by just three months. I’d chosen to ask the fortune-teller about my health—a question that might have seemed odd coming from a young woman. But even back then, during my short weekend trip to Atlantic City with my boyfriend, I had a sense that I was not well. I’d been sitting with Scott at dinner in some casino restaurant in Caesar’s Palace, maroon velvet walls all around us and huge silver goblets on the table as symbols of a tacky Ancient Rome. A photographer dressed in a bedsheet toga wandered over and asked if he could take our picture. I wished that he’d skipped our table; nausea and light-headedness occupied my attention, and the last thing I wanted to do was strike a pretty pose. Scott did not know this, of course, and asked for one photo—of me, alone on my side of the booth—so he could have a memory shot for his wallet. We’d only been dating two months, but Scott already knew I was more than a little bit camera shy and would have to be coaxed into a smile. As the photographer stepped backward from the table and toyed with his lens, Scott leaned across and whispered to me in an accent he couldn’t have intended to come off so comically French, “You are my leetle Rom-an godd-ess! Your beauty could fill ze Coliseum!” I laughed, my chin resting on my palm, elbow on the table, and—click—the photographer caught me in a full smile. It was a pose Scott would carry in his wallet for the next seventeen years: his lighthearted Roman goddess always there at his fingertips, twinkle-eyed and lovely. He saw only happiness in the photo, but for me the image contained a painful memory; I had been concealing something from Scott that night. Even as I laughed at his comparing my beauty to a Roman sculpture, my mind was troubled: I really don’t feel well. This is something bad and I know it.

A haunting memory of the photograph came to mind as a car whisked me up First Avenue to my first-ever appointment with a cardiologist. I began searching my mind for signs that I’d missed or had ignored over the last year, ones that might have been responsible for landing me in the backseat of this car. I felt proud at first, for having been so courageous through months of symptoms that might have sent a weaker woman running back to the doctor who’d waved her good-bye with a hug and a saltshaker prescription. But then I thought myself a fool who just might have kidded her way straight into a medical emergency. As the city blocks rushed by and blurred, negativity and doubt began to set in. I shivered with regret and shame, recalling how I’d put my faith in a container of Morton’s salt. Deep down, I hadn’t fully believed Dr. Clark at the time he’d said it would cure my low-blood-pressure problem, but I’d found his jaunty prescription hard to resist and his bear hug reassuring.

The Friday-night circuit of diagnostic tests he ordered had revealed an unspecified something wrong with my heart; by Monday I had an appointment with a cardiac specialist, Dr. Daniel Bradley. My father and Beverly, as my parents, were the natural choice for driving and accompanying me. I would have liked for Scott to be with me as well today, but he was hours away at Penn Law School, caught up in hours of classes and a part-time job, so I’d told him to stay put; I was fine and would speak with him afterward. I’d also considered asking my sister to come but then thought better of it; Jodie was severely doctor- and hospital-phobic, averse to the point of true hysteria when faced with white coats and syringes (even when aimed at someone else). Her presence would only have added to the fear and anger that had been mounting inside me.

By the time my parents’ car stopped in front of the medical building, I had worked up a huff of angry disappointment that radiated far beyond the confines of Dr. Clark’s office and my own foolish denial. I was already irritated at my future cardiologist, Dr. Bradley, and I hadn’t even met him yet. I was also plenty leery. Thirty blocks northbound in my father’s car had given me enough time to arrive at a troubling conclusion: doctors cannot be trusted; they make awful, awful mistakes.

My father and Beverly, though, would keep the faith and hold fast to the idea of super-doctors, with Dr. Clark being the most illustrious among them. By extension, Dr. Bradley was raised high in their esteem for having been his top cardiologist pick. Were it not for Marvin (Dr. Clark’s first name rolled off my father’s tongue as if he were referring to a golfing buddy), it would have taken weeks to land an appointment with a cardiologist of such renown. My father insisted I was fortunate: Marvin was there when we needed him, with his sharp diagnostic skills and unparalleled web of best-doctor connections.

Lucky me. Lucky us.

“But he got it wrong,” I said, surprising my father. I hadn’t yet detailed for him the progression of my office visits with Dr. Clark, because up until this point it hadn’t seemed important. But now that my father was expecting me to worship this new cardiologist as a blessed offshoot of our family internist, I felt compelled to speak up and put both merely mortal physicians in proper perspective: neither one of them deserved our blind devotion.

My father appeared not to have heard what I just said—or else he was pretending real hard.

“I went to see Dr. Clark last year because I was passing out a lot. He said it was just low blood pressure. Obviously he was wrong.”

“Come on, honey, did you tell him you were passing out? Did you? Really, did you actually tell him?” This was Beverly talking. She turned her head to glance back at me from the passenger’s seat and threw off that high-eyebrow mother glare of hers, accusatory and questioning at the same time. It was a look she’d been flashing my way since I was eight years old, perhaps because Beverly understood that young girls needed to be on the receiving end of this kind of lingering stare from time to time. It was a sign of love. Beverly knew I had never gotten much in the way of affectionate maternal scorn at home. My parents’ divorce had left me at age five with a mother who wouldn’t bother expending the effort it would take to raise an eyebrow for my benefit; she was too busy fawning over a glass of scotch—and then another and another. I had begun mixing my mother’s drinks on request in the second grade; a hair-raising howl would float up to my room, and quickly as I could drop a Magic Marker in my lap, I would be down in the drinking den with the red-haired terror I was forced to call Mom. I’d count out three ice cubes into her favorite glass and then douse them with Johnnie Walker, poured to the level that matched the length of my ink-stained thumb.

This would all continue until it was time for me to go to college, at which point I left my bartending duties behind forever, along with the face, voice, and liquor-soaked rages of the exacting patron in the hell-pit cocktail bar that was my childhood home. I didn’t look back. Didn’t call. Didn’t write. Didn’t share my college academic awards, my law-school admission, or even my heart illness. It seemed to me I hadn’t lost much by running off this way; all I had really given up was a mother in the most attenuated sense. It was Beverly who had truly raised me and Jodie since little girl-hood, taking root as a nurturing presence in our lives—if only on weekends and school holidays, according to my father’s rights under the divorce agreement. In between visits, there were frequent conversations on the phone. Beverly showered us with attention, doling out love, guidance, and advice wherever Jodie or I ran short.

And today, in the midst of a tense car-ride discussion, I would accept Beverly’s insistent prodding begrudgingly, even as part of me was glad to be needled with so much interest and caring.

“Of course I told him.” It was a perfect place to throw in an eyeball roll, and so I did, with drama; it was the kind of roll a mother might expect from a daughter like me.

“Maybe you should have been more insistent,” she said.

“I told him what I was feeling. That’s all I had to do. Dr. Clark was supposed to figure it out from there.”

“And he did . . . eventually. We’re lucky he caught it, I tell you. So lucky.”

I slid across the backseat and out into the hard cold rain. My father and Beverly managed to make their way from car to doorway before I did because they ran like mad. At first I set out to jog the thirty feet along with them, but my strength gave out and I couldn’t catch my breath. Then I remembered what Dr. Clark had told me Friday about walking slowly, and it all began to sink in: the pelting rain, the cardiologist appointment, the horror and strange humiliation of watching my father and Beverly, both nearly sixty years old, make it inside a full twenty seconds before I could. They watched with patient smiles as I slow-stepped toward them through sheets of rain, wincing. It was in this moment that I experienced for the first time in my life what it was like to be dis-empowered by illness; I was not able to move as fast as I wanted or needed—my twenty-four-year-old body wouldn’t let me—and if I pushed through limitations with my usual stubborn strength, I feared it might cause my heart to give out. How terrifying even to think it: that I could die while trying to save myself from getting sopped by this rain! Thirty feet of distance from car to doorway appeared before me like a life-and-death choice. It was the first choice of this kind that I’d been forced to make in my life; it would not be the last.

It seemed I was caught in a rainstorm full of lessons: a momentous mind-altering downpour that would teach me with a slow, soggy trek up the steps of a medical building that youth is no protection from illness. It would also remind me—forever—that extreme weather can be an omen (for me, at least). Whenever I woke again to the sound of rain splattering sideways against my bedroom window, I would sense a portent of bad news to come. It was all I needed to set off on a slide—down, down—to a place of worry and fear about my body. I’d drop like a shot, ending at a black bottom no healthy person would ever understand, trembling beneath my quilt in secret panic.

I’m dying again. I’m dying again.

“Who wants to hear a joke?” My father was ready, as always, to distract with humor, pulling my attention away from this waiting room of cardiology patients three times my age.

“Sure, Dad, lay it on me,” I said, leaning closer to him.

“A doctor finishes examining this guy and says, “Look, I’ve got bad news and good news. Which one do you want first?” The guy tells him he wants the bad. “Okay, you’ve got two weeks to live. I’m so sorry.” Then the guy asks what the good news could possibly be, and the doctor answers, “See that blonde nurse down the hall there, the one with the big boobs? I’m fucking her.”

Good one, Dad.

My father always managed to get a laugh out of me, even with the crudest and most offensive jokes. He had a gift for lighthearted delivery and a comic sense that never failed—not even in a cardiologist’s waiting room.

Looking at my father’s face as the smile faded from his lips, I saw nothing in his expression but easy confidence, as if he were sitting with Beverly and me in a nice restaurant waiting for our menus to arrive. Maybe it was just optimism, or maybe a worried father’s denial all dressed up to achieve that casual appearance. But it was his ability to hold on to this nonchalance after our appointment that seemed to me most ludicrous. My father would tell me the details of a phone call he received later on from a friend, who’d reacted to my bad news by saying, “Gee, Arthur, that must’ve been a terrible day for you.” My father had told him, yes indeed it was a horrible day—for his stock portfolio.

It so happened that my appointment with Dr. Bradley fell on October 17, 1987—also known as Black Monday—the day when the stock market went wildly bad and took a giant nosedive. It was a downfall reminiscent of the crash that set off the Great Depression. As stockbrokers and securities analysts considered whether to jump from their windows just after the four o’clock closing bell, I rode the elevator up to the cardiology suite with my father and Beverly. By the time we rode down again one hour later, a few Wall Street lives had been lost and the value of innumerable stock portfolios stunningly obliterated.

There had also been a prophecy fulfilled: You have two daughters. One of them will get very sick.

Dr. Bradley’s findings on Black Monday marked the definitive beginning of my life as a sick person on the edge of dying. I would never again know any other kind of life again. The stock market, though, recovered and in time reached unprecedented levels of robust trading and widespread prosperity. Some of these profits would come to benefit me directly, helping to pay the massive medical bills that lay ahead.

Madame Clara had been right; she’d seen it all in my father’s palm years before: dark and light.

Reading Group Guide

Readers’ Guide by Barbara Putnam

1. Throughout the book Amy seeks to find her identity and protect it. What are the ways she establishes who she is? What are some of the assaults to her view of herself? How does illness inexorably set her apart? (Think about times people avert their eyes, isolating her. Her parents? A phalanx of residents around her bed? Even doctors whose expertise she threatens?) “This doctor couldn’t possibly be angry with me because I, Amy—the law student, the young woman, the whole person—wasn’t there anymore. His blank stare told me so” (p. 80). Imagine Amy’s speaking of “her diluted self” (p. 81) even before the transplant operation.

2. Describe Scott from the heady days of early courtship through the years of struggle and triumph. He is in many ways extraordinary, not only in his own achievements, but also in his almost unbelievable devotion to Amy at every crisis, every test. How does his dedication give us a measure of the woman he loves?

3. When is Amy faced with her biggest challenges? When is she absolutely flattened and ready to give up? Is the reader able to empathize with her despair based on her honest account? Who and what save her?

4. “Sick girl.” When and how is the label first stuck on Amy? (p. 70). How does she respond to the term? Is she delimited or rather challenged by the words? Has she chosen an apt, if provocative, title for her memoir?

5. Do you think Amy is “an ungrateful patient” (p. 73) as she herself sometimes worries? How do you react to her lambasting her doctors? Refusing to offer her heart as Exhibit A to the student doctors in Philadelphia? How does Scott try to protect her from her violent reactions?

6. Talk about Amy’s relationships with her doctors. How do her attitudes evolve? (p. 223). Yet, as in other aspects of her health and life, just when she thinks she has a handle on something, it shifts. Good news morphs into bad or ambiguous (p. 241). Does she ask for unrealistic support from her doctors? Are their own reservations about friendship reasonable? When we are ill, are we driven to consider our doctors infallible? “There were doctors who were supposed to know it all but who knew only enough about heart transplants to recognize that I presented a challenge beyond their comfort level . . . With a patient like you, it’s hard to be sure about anything” (p. 245). And the longer Amy survives, the more it is uncharted territory for everyone. Who are the doctors who stand out as humane individuals?

7. Is it normal that Amy is bitter about her childhood? What was her mother like? Having been ignored and exploited from the age of five on, is it another measure of her determination that she refuses to let that bitterness poison the rest of her life? How does the same strength of character reveal itself in her illness?

8. Amy takes enormous pride in her mothering of Casey (and in Scott’s and her parenting together.) Instead of recapitulating her own childhood disaster, what has she decided to accomplish with Casey? Who has been a rich surrogate mother for Amy? Can you recall examples?

9. What does friendship mean to Amy? Scott, of course, is closest and most dependable. Who are other essential friends? How do they support her? What is it about her illness and her pride that complicates relationships?

10. Amy is quick to observe a “self-serving” quality in others—and is often wickedly funny about it. Do you sometimes find a similar trait in Amy? Does her bone honesty compel her to include this less flattering side in her memoir? Is it necessary for her survival that she often needs to be her own cheering squad?

11. A large part of Amy’s character is her gratitude. She is generous in her appreciation of many people. Talk about these instances (even if she can sometimes be cranky about the same people.) Her father? Beverly? Her deep gratefulness to Scott is nearly constant. What are some of the many gifts he bestows on Amy, and at what cost? As depicted in her memoir, does Scott emerge nearly as heroic as Amy?

12. How much of the book is Amy’s need to reach out? Is a big impetus for the book her need to explain, from behind her loneliness and fear, not only how much she has suffered but also how much she has loved and been loved? Does she succeed in these goals? About Scott, she says, “There is still so much I want to tell him—about the limitations of this sick girl and the expansiveness of her love” (p. 292).

13. Contrast Ellen as a transplant patient with Amy. How does Ellen’s smug outsmarting of the doctors’ prohibitions differ from Amy’s idea of being a “smart patient”? Give examples of Amy’s extraordinary discipline, both mental and physical. Does her pushing herself (mountains, Pamplona) sometimes seem frightening or unwise? Do you think it is this beyond-the-boundaries physical testing that has preserved her?

14. How does Dr. Allen, himself a cancer survivor against dire odds, change Amy’s thinking? (p. 256). Is it not only what he says but how he says it? (Contrast him with all the other superstars in operating rooms, too busy to talk to her or hold her hand.) “As long as you live you must fight. Always fight . . . It’s not something that begins and ends. You must see it as a journey” (p. 256). What does it mean that he takes both her hands in his, shares his own story and talks to her, unlike other doctors, without science or statistics. “And I was off on my next journey” (p. 257).

15. When are times in the memoir that Amy does not feel like a sick girl? Are they times she can take particular pride in her achievement? Even when she is deceiving others about the ravages of her illness?

16. “If I listened to my heart sounds for too long, I began to imagine them coming together to form a death march” (p. 269). Is it a mark of Amy’s ingenuity that she devises a way literally to hug herself for company and comfort?

17. For someone who has always taken pleasure in her body and prettiness, the effects of prednisone and her monumental scar are a test. How does Scott always make her feel like a heroine in a love story, always dazzling in his eyes?

18. What is the essential, terrible paradox of Amy’s adult life? “There was just no saving heart-transplant patients without harming them as well” (p. 176). Amy rightly sees her medicines as poisons. “What had once been an integral and vibrant presence in my body—all those lovely white cells and T cells—was now the enemy of the pills I’d just tossed into my mouth. . . . It seemed that when I agreed to a heart transplant, I had made a deal with the Devil” (p. 263).

19. “It’s a rare patient who gets to have an autopsy performed on her heart without having to die first” (p. 222). What do doctors learn from the autopsy? How and when does Amy find out about this information? How does she now view her first twenty-four years? Do you think the doctors were right to withhold their analysis?

20. Is Amy unusual in seeking further “meaning” to her life? Beyond her long successful battle to stay alive, her law degree, her marriage, and her child? Do you think writing the book has helped her achieve meaning? How do you think going public about her life will influence future heart patients, doctors, and potential organ donors?

Suggestions for further reading:

Autobiography of a Face by Lucy Grealy; Man’s Search for Meaning by Viktor E. Frankl