Immortal Bird: A Family Memoir

( 10 )

Overview

Immortal Bird is a searing account of a father's struggle to save his remarkable son from a rare heart condidtion that threatens his life. It is a moving story of a young boy's passion for life, a family's love, the perils of modern medicine, and the redemptive power of art in the face of the unthinkable.

Damon Weber is a brilliant kid—a skilled actor and a natural leader at school. Born with a congenital heart defect that required surgery when he was a baby, Damon’s spirit and ...

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Overview

Immortal Bird is a searing account of a father's struggle to save his remarkable son from a rare heart condidtion that threatens his life. It is a moving story of a young boy's passion for life, a family's love, the perils of modern medicine, and the redemptive power of art in the face of the unthinkable.

Damon Weber is a brilliant kid—a skilled actor and a natural leader at school. Born with a congenital heart defect that required surgery when he was a baby, Damon’s spirit and independence have always been a source of pride to his parents, who vigilantly look for any signs of danger.

Unbowed by frequent medical checkups, Damon proves to be a talent on stage, appears in David Milch’s HBO series Deadwood, and maintains an active social life, whenever he has the energy. But running through Damon’s coming-of-age in the shadow of affliction is another story: Doron’s relentless search for answers about his son’s condition in a race against time.

Immortal Bird is a stirring, gorgeously written memoir of a father's fight to save his son's life.

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Editorial Reviews

Publishers Weekly
A father celebrates his son’s life while trying desperately to save it in this luminous character study­–cum–medical odyssey. Weber recounts his teenage son Damon’s battle with enteropathy, a usually fatal disorder, linked to a congenital heart defect, that starves the body of protein. Weber threw himself into researching and managing his son’s ailment, but nothing stopped the progressive debilitation and wasting; finally Damon received a heart transplant that brought new disasters in its wake. Weber’s detailed, harrowing narrative of Damon’s struggle is in part an indictment of modern medicine, which he depicts as a combination of miraculous technology with dangerously flawed basic caregiving; his furious accusations of substandard practice at New York’s prestigious Columbia Presbyterian Hospital—erroneous prescriptions, botched diagnoses, slipshod nursing, callous doctoring, “drive-by exams”—will raise eyebrows. But Weber reserves most of his energy for a tender, clear-eyed profile of his son. Small, sickly, but charismatic and a natural actor, Damon cunningly conceals his physical weaknesses while extracting every ounce of happiness from his straitened circumstances; even as he fades, this kid seems to own every room he enters. Weber’s heartbreaking story gives us both a tragic cautionary tale and a moving account. (Feb.)
From the Publisher
“Both heartbreaking and life-affirming, this is a tender tale of the love between a father and son.”—Booklist

“A heart-wrenching family memoir that describes the deep love between parent and child, while also celebrating the nobility and spirit of a boy who embraces life with a fiery passion.”—Bookpage

Library Journal
When Weber's son Damon was born, his heart lacked a second ventricle. Two open-heart surgeries allowed him to manage a full life that included a love of acting (he appeared in the HBO series Deadwood). Then, at age 13, Damon's heart rebelled. In language that seems at once vivid, heartfelt, and angry, Weber recounts the medical battle that followed while powerfully conveying his love for his son. This one will disrupt your sleep.
Kirkus Reviews
A father's intimate portrait of a dying son. In his debut memoir, Alfred P. Sloan Foundation program director Weber chronicles his son's monumental struggles with a malformed heart. Damon's coming-of-age amid his illness quickly becomes the narrative focal point, as well as the effects of a family worn thin from the strain of his suffering. Damon's father provides a voyeuristic view of a family in turmoil, serving as both patriarch and Damon's most dedicated supporter. Yet after 9/11, Weber reached a startling conclusion: "Why couldn't we stop this?" he writes. "What else can't we protect [the children] from?" The answer was, heartbreakingly, a life-threatening illness. After a series of surgeries and the near-constant seesawing of Damon's health, the family soon learned that a heart transplant remained his only option for survival. Weber faithfully recounts this struggle, but Damon's blog posts provide the most unadulterated view of innocence corrupted by illness. Weber's occasional overstep from intimacy to indulgence is easily forgiven by the characters he brings to life, even as he watches his main character "disintegrating before [his] eyes." In the climactic scene, as father and son met once more around the hospital bed, the author attempted a stoic farewell to his son: "There's no time for false modesty," he writes. "I'm only giving Damon is due." A heartsick father's poignant account of his heartsick son, and a primer on the fragility of life.
Reeve Lindbergh
…frustration and rage are not the story here. The story is Damon himself, his life, his loyalties, his courage, his eloquence (Damon's blog excerpts alone make the book worth reading) and his family, all rendered with love, humor, pain and exquisite clarity. Beautifully told and skillfully paced, surprisingly joyful at times, this memoir above all presents an extraordinary young life. In the brightness of this life, the realities of illness, pain and medical imperfection are secondary for the reader, and ultimately disappear. The radiance remains.
—The Washington Post
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Product Details

  • ISBN-13: 9781451618068
  • Publisher: Simon & Schuster
  • Publication date: 2/7/2012
  • Pages: 368
  • Product dimensions: 6.20 (w) x 9.30 (h) x 1.30 (d)

Meet the Author

Doron Weber was born in Israel, grew up in New York, and was educated at Brown University and Oxford. He has worked as a newspaper boy, busboy, waiter, and taxi driver and is the coauthor of three published nonfiction books and various articles. For fifteen years he has worked at the Alfred P. Sloan Foundation, a nonprofit that supports science and education.

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Read an Excerpt

Immortal Bird

A perfect spring evening at Yankee Stadium. The air is warm, with the slightest breeze ruffling the flag. The baselines and foul lines are stamped in fresh white chalk.

I have taken Damon and two of his closest friends, Kyle and Keith, to a night game against the Boston Red Sox. The stadium is packed, the fight songs blaring and the beer flowing, as befits these longtime archrivals. But the three teens don’t really care. They enjoy the aesthetics and ambience of the game as much as the competition.

“Check out the body-paint dudes!” Keith points at the bleachers, where seven rowdy males spell “Go Yanks!” in bold lettering across bare torsos.

“I think they’re drunk.” Kyle wrinkles her nose at the beefy, soft-bellied roisterers.

“Man with crazy chef’s hat, six o’clock!” Damon gestures three rows ahead, where a fan sits in a billowing, brimless white hat. “The Mad Hatter is blocking the view—”

“It’s called a toque.” Kyle corrects Damon with her sweet Natalie Portman smile.

“Duh, I think it’s a mascot for Sheffield—he’s ‘the Chef,’ ” Keith interjects, correcting Kyle.

“Really? Whatever . . .” Kyle giggles as she takes in the information.

“Hey, Dad, can we get Cracker Jacks? Kyle needs brain food.”

Kyle is Damon’s oldest and closest friend, a girl he rescued in kinder-garten when the school bus dropped her off at the wrong stop. They are the same age but Damon is a grade ahead, which makes him the sage elder. Now almost thirteen, Kyle changes her hair color every week—today it’s purple with blond streaks—and she wears bangles and bracelets and layers of colorful clothing. She is bright, vital, and quite beautiful, but her identity shifts like a kaleidoscope, with a propensity toward the darker hues.

The Cracker Jacks arrive in a giant box and Kyle and Keith dive in looking for the prize. “If it’s a ring, it’s mine!” Keith smiles.

Keith is a tall, wiry African American, wry, sensitive, and hyperarticulate. He and Damon attend Salk together. Handsome and fine-featured, like a model, Keith lives alone with his young single mother in Harlem and spends weekends with his grandmother in Queens.

“Okay, guys, we need to root for the Yankees,” Damon announces late in the game. “I think they’re losing”—he checks the scoreboard—“and we don’t want my dad to go home unhappy.”

And indeed, after eight lackluster innings, the Yanks rally and pull out the game with two home runs in the bottom of the ninth. The stadium erupts. Damon and I exchange excited high fives, connecting in the moment’s primitive ecstasy. Although not a committed fan, Damon appreciates raw emotion and the thrill of the come-from-behind. And he is impressed by my militant cheerleading for someone other than him. As he embraces Kyle in the pandemonium, I note he looks a little hamstrung, as if nursing an injury.

I wonder if it’s the aftereffects of his “fight.” Five weeks earlier, Damon came home from school with deep cuts and a grapefruit-sized swelling across his forehead. He’d gotten into an altercation with the school bully, a humongous lout twice his size.

“This kid kept shoving me and trying to get in my face,” Damon explained. “He bumped me with his chest: ‘Come on, little guy, fight me!’ ” I told him I wasn’t afraid of him but I didn’t want to fight, so I started to walk away when he rushed me from behind and smashed my head against the cafeteria table. I never saw him coming.”

Damon sustained contusions, a hematoma, and a concussion. Head injuries even in healthy people are notoriously complex, as both Shealagh and I know: Shealagh did research on war veterans with head wounds at the Radcliffe Infirmary Neuropsychology Unit at Oxford, where we met, and I boxed for Oxford University and learned about concussions firsthand. We kept Damon at home while I initiated disciplinary action against his attacker, a notorious troublemaker, and made sure this could never happen again.

Damon appeared physically traumatized yet stubbornly proud, incised with fresh, deep wounds he’s worn since like a badge of honor. He recovered, and his standing up to the class bully only enhanced his status in school as a leader. But the incident forced me to confront his vulnerability, and my own possible complicity in it. I had always taught Damon to stand up for himself and to hold his ground. But now I felt torn between a father’s pride at his son’s courage and concern that Damon not follow my example too closely, because he lacks the physical resources to defend himself. I quickly realized, however, that any cautionary advice at this stage was futile because Damon’s character had long been formed. All I could do was hug my brave-hearted bantamweight while privately resolving to watch him like a hawk.

We return from Yankee Stadium in high spirits, dropping Keith off in Harlem and Kyle in Ditmas Park. Shealagh, waiting up, gets a full report from her beaming son as we sit in the downstairs kitchen. Damon even eats his mother’s rhubarb pie as he fills her in on the triumphant game.

It’s been a good day. But now it’s late and there’s school tomorrow, so Damon moseys up to the middle floor, where he and Sam have adjacent bedrooms. Shealagh goes to talk to him and get a little private time—mother and son have their own very special bond—before she kisses him good night and leaves.

As I pass through on my way to the top floor, Damon cracks the bathroom door and calls to me from the doorway. “Hey, Dad, can you come here a minute?”

I can sense something amiss as I head to the bathroom. Normally Damon asks his mother about routine matters and saves me for the big stuff.

As I walk inside, Damon closes the bathroom door with mysterious urgency. I feel the burden of a pending revelation and brace myself.

“I wanted to show you this, Dad . . .”

Damon pulls down his pants and lowers his boxers under the overhead bulb.

“Oh man!” I shake my head. “What happened?” His testicles hang down, hugely swollen. They look four times their normal size. He’s a young kid and I am all for his sexual development, but this is alarming. “When did . . .?”

“I noticed it Friday but thought I should wait a day. But it hasn’t gotten better.”

“Poor guy . . . Does it hurt, D-man?”

He hesitates. “It’s uncomfortable.” Damon has experienced real pain and never exaggerates about such matters. “And it’s kinda awkward, you know—”

“Sure. Okay, this isn’t right and we’re going to take care of it. Pronto!”

I talk to Shealagh, then call a few doctor friends. Two scenarios emerge. A hernia, the most likely, or a twisted testicle, rarer and more urgent. And given Damon’s history, there’s always an extra element of uncertainty and fear.

We decide not to risk waiting until morning and call my parents to come over and babysit Sam and Miranda before we speed off to Columbia Presbyterian Hospital, which has treated Damon since shortly after his birth. It’s a long drive, but Columbia knows his complex case and we trust them. It’s past midnight when we reach the sprawling medical complex in Washington Heights.

Eons ago, we did hard time in this hospital and feared we’d never escape. Once, when he weighed only eleven pounds, Damon spent thirty days in the ICU, trying to come off the respirator. Now as we arrive, the dread memories rise up.

We walk past ambulances, EMT personnel, and two burly cops and enter into the perpetual twilight zone of the emergency room, a cacophony of coughing, moaning, shouting, and crying. We pick our way through the tumult and despair and request immediate care for our son. Damon’s cardiologist, Dr. Hayes, has called ahead and told them to expect us.

The admissions clerk nods, unimpressed, and gives us forms to fill out.

A well-organized unit, we establish ourselves on three plastic chairs. Shealagh distributes juice and snacks and fills out forms, I call home to check on the kids and gather intel from the staff, and Damon, after sweeping the room, disappears into his copy of The Subtle Knife by Philip Pullman.

Eventually an intake nurse admits us and we enter a more orderly if still-hectic space. Someone takes Damon’s vitals and he gets a bed with a flimsy half curtain. We wait until a young resident pops by. He checks Damon’s groin and instantly declares he has a hernia. A bona fide inguinal hernia, the gross rupture will need to be surgically repaired, but he finds no twisted testicle or undue cause for alarm.

I feel a measure of relief but continue talking to the doctor as he examines Damon. Because he is unfamiliar with my son’s anatomy—Damon’s heart is on the right side and several other organs are reversed—I fill him in while he asks questions and offers observations. I’ve long grasped that medicine is an imperfect art, fifty to a hundred years from being an exact science, so I gather information from every possible source. I’ve also learned that good doctors are not necessarily the senior people with fancy reputations—often quite the opposite—and a young resident, if he observes thoroughly and with an open mind, can tell me as much as anyone.

This resident—he has the gift; you can tell in the first thirty seconds—palpates Damon’s abdomen and casually mentions his liver is enlarged, which I’ve never heard before. When I inquire further, he lets me feel how the liver presses against the abdomen, its margins extending beyond the normal range. Damon watches us with quiet, alert eyes, always the model patient, and I wonder if this enlarged liver could explain why his belly protrudes, giving him a slouching appearance. Even in karate class, with his gi neatly belted and his back erect, his stomach seems to slump forward, and zipped into a black wet suit for swimming, he looks paunchy despite his leanness.

Shealagh and I have questioned his cardiologist about this anomaly and we once dragged Damon to a chiropractor to try to sort it out. We exhort our son to stand up straight and pull his shoulders back. Now it strikes us a protruding liver could explain his posture more than any deficiency of spine or will. We feel a stab of guilt that we held Damon even partially responsible. Later, when we pursue the oversized liver with the chief of surgery, he says it is completely normal for children with Damon’s heart condition and he sees it frequently. We wonder why no one ever told us this before.

We schedule the surgery promptly but try to minimize the disruption to Damon’s life. He hates to miss school and has started rehearsal for Charlie and the Chocolate Factory.

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Customer Reviews

Average Rating 4
( 10 )
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Sort by: Showing all of 10 Customer Reviews
  • Anonymous

    Posted March 31, 2012

    Immortal Bird is both a touching and wrenching portrait of many

    Immortal Bird is both a touching and wrenching portrait of many things - a father's love for his son, a gifted child overcoming incredible adversity, a family's love and support in the face of that adversity, the impotence of that family struggling to cope with hard-to-comprehend medical care and decisions, and the callous indifference of the doctor managing that care. It is impressive on all of those levels, but the last two (which particularly come to the fore in the last third of the book) are the most powerful. As part of that section, Doron Weber paints what seems to be a critical though fair portrait of a medical professional's decisions and decision-making process. Unfortunately for Damon, she displayed an ultimately fatal incompetence and stunning indifference in dealing with his his condition. The only thing that's left unclear, and that Weber and the rest of us can never know, is where the incompetence began and the indifference ended.

    What's frightening about the book is that the author was so perfectly positioned to learn and understand the issues at hand, yet despite all of his advantages was left in a position of dependence on an incredibly negligent doctor. Clearly an extremely bright and accomplished fellow, Weber could draw on personal and professional connections to learn all that a layperson could about appropriate and inappropriate approaches to treating his son. Yet he still had to depend on that lead doctor, who made crucially, grossly incorrect decisions that led to his son Damon's death after, all too ironically, successful heart surgery.

    I've read one critical review here at B&N that portrays the author as being misogynistic. That's unfair and unfounded. True, the lead doctor is a woman, as are (if I recall correctly) her junior associates. But incompetence and indifference know no gender boundaries. At no point does Weber even hint that the flawed medical treatment flows from their being women. And plenty of women in the book are portrayed in a very favorable light. In fact, as depicted on one memorable scene, a leading medical expert whose recommendations the lead doctor ignored was female.

    While I found the medical drama the most powerful and sad part of the book, Immortal Bird is of course about much more than this. Many will identify with the story on those other levels. The struggles, pain and yes, joy, that the family experienced throughout Damon's life, including in its closing stages, are touching. And Damon truly was a special guy, both for how he dealt with his condition and for many attributes that had nothing to do with that battle. Much of the book is about him, his spirit and his accomplishments, not about his illness and death.

    In the end, then, Immortal Bird accomplishes its purpose of immortalizing Damon Weber. But for many of us, as moved as we are by that individual story, the even more searing imprint is about how the medical profession, starting with medical education, needs to change to minimize the indifference and incompetence that cut short the life of a wonderful young person. It could happen to any of us. It could happen to any of our children.

    1 out of 1 people found this review helpful.

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  • Anonymous

    Posted February 19, 2012

    Immortal tears

    Wow. I honestly do not know what to say... i just closed the book and tears are still streaming from my eyes. This is the first book in a long time that has moved me so. This one will really change your prospective on a lot of things. Truly a beautiful story...just wow. Only thing i would like to say is that i think it is important to ignore Mr. Weber's tendencies... to be... well annoying and focus on the bigger notion of the story, if you can get past certain bits of frustration, you will really be touched! I applaud you Sir your son truly changed the world, and so have you by writing this book

    1 out of 1 people found this review helpful.

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  • Anonymous

    Posted October 27, 2011

    A must read!

    In Immortal Bird: A Family Memoir, Doron Weber shares the inspiring yet heart-breaking story of his son Damon's medical battles starting with him being born with a heart defect and culminating with a successful heart transplant gone awry possibly due to substandard practice. Doron goes beyond telling a moving story; he makes the reader feel as if he/she personally knows the family. Damon Weber was a truly gifted actor during his short life and touched everyone he met with his dynamic, upbeat personality. The excerpts from Damon's blog add to the "personal" feeling of the book by giving the reader an inside look into how Damon talks to his peers which reinforces his charismatic personality. I couldn't put Immortal Bird down, even while it made me laugh, cry and want to hug my own son a little tighter and I would highly recommend it to anyone.

    1 out of 1 people found this review helpful.

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  • Anonymous

    Posted October 18, 2012

    Powerful & Relevant

    It is practically impossible to explain to someone who has not read this book why they should read it. I dont' even remember why I bought it, but I am so glad that I did. This is one of those rare books that makes you proud at one moment to be a human being and completely ashamed at others. The message between the lines is in large font bold print. Loving each other is a gift that we all should share.

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  • Anonymous

    Posted March 28, 2012

    This book is an obnxious, misogynistic rant. The author is one

    This book is an obnxious, misogynistic rant. The author is one of these delusional people who thinks that money and influence were going to be able to save his child from an inevitable death (the child was born with a heart having only one ventricle). He name drops thoughout the book and allows his son and friends to look at what are supposed to be confidential applications (and make disparaging comments about applicants pictures). He makes insulting comments about how the female doctors look. He becames irate when a doctor takes a weekend off and does not provide him with her home phone number. Columbia Presbyterian hospital needed to call security because of his abuse of the staff. He is suing the hospital because his child died after a heart transplant (and of course somebody needs to pay for that). By the end of this book you end up having no sympathy for the child that died or the family left behind.

    0 out of 2 people found this review helpful.

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    Posted March 20, 2012

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    Posted October 18, 2012

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    Posted February 22, 2012

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    Posted November 7, 2011

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    Posted July 3, 2012

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