Immortal Bird: A Family Memoir

Immortal Bird: A Family Memoir

4.0 10
by Doron Weber
     
 

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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

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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

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
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
“Apowerful and lyric portrait of a son and a vibrant family.”—Toni Morrison

“I was seized by Doron Weber’s prose….We’ve gained a book of rare passion.”—Nancy Milford, author of Savage Beauty and Zelda

“I found it almost impossible to read this book, or even to see the pages, at times, through my tears. It was equally impossible to stop reading it—to turn away from its red-haired teen hero or the voice of his adoring father. The boy Damon, whose lifeis delimited by his damaged heart, emerges here as the grandest spirit in a small body since Antoine de Saint-Exupery imagined The Little Price.”—DavaSobel, author of Longitude

Immortal Bird is the best portrait of a childhood I’ve ever seen, and a moving and unforgettable evocation of the intense love between a father and a son.”—Richard Rhodes, author of The Making of the Atomic Bomb

“In language at once vivid [and] heartfelt…Weber recounts the medical battle that followed [his son’s heart condition] while powerfully conveying his love for his son. This one will disrupt your sleep.”Library Journal Pre-Pub Alert

“A heartsick father's poignant account of his heartsick son, and a primer on the fragility of life.”Kirkus Reviews

“[A] detailed, harrowing narrative…a tender, clear-eyed profile of his son…Weber’s heartbreaking story gives us both a tragic cautionary tale and a moving account.”—Publishers Weekly

“Ferociously tender…lovely and heartbreaking.”People Magazine (3/5 out of 4 stars)

“Heartbreaking.”—Entertainment Weekly

“Beautifully written…[As] the end approaches, so does a sense of the miraculous: Like the brightest stars, Damon’s energy consumed him, even as it galvanized others. It’s that luminosity, carefully expressed by a devoted father, that makes this memoir so transporting."—MORE Magazine“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.

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Product Details

ISBN-13:
9781410445414
Publisher:
Gale Group
Publication date:
02/15/2012
Edition description:
Large Print
Pages:
623
Product dimensions:
5.80(w) x 8.60(h) x 1.40(d)

Read an Excerpt

Immortal Bird

  • Chapter 2

    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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  • What People are saying about this

    From the Publisher
    “Apowerful and lyric portrait of a son and a vibrant family.”—Toni Morrison

    “I was seized by Doron Weber’s prose….We’ve gained a book of rare passion.”—Nancy Milford, author of Savage Beauty and Zelda

    “I found it almost impossible to read this book, or even to see the pages, at times, through my tears. It was equally impossible to stop reading it—to turn away from its red-haired teen hero or the voice of his adoring father. The boy Damon, whose lifeis delimited by his damaged heart, emerges here as the grandest spirit in a small body since Antoine de Saint-Exupery imagined The Little Price.”—DavaSobel, author of Longitude

    Immortal Bird is the best portrait of a childhood I’ve ever seen, and a moving and unforgettable evocation of the intense love between a father and a son.”—Richard Rhodes, author of The Making of the Atomic Bomb

    “In language at once vivid [and] heartfelt…Weber recounts the medical battle that followed [his son’s heart condition] while powerfully conveying his love for his son. This one will disrupt your sleep.”Library Journal Pre-Pub Alert

    “A heartsick father's poignant account of his heartsick son, and a primer on the fragility of life.”Kirkus Reviews

    “[A] detailed, harrowing narrative…a tender, clear-eyed profile of his son…Weber’s heartbreaking story gives us both a tragic cautionary tale and a moving account.”—Publishers Weekly

    “Ferociously tender…lovely and heartbreaking.”People Magazine (3/5 out of 4 stars)

    “Heartbreaking.”—Entertainment Weekly

    “Beautifully written…[As] the end approaches, so does a sense of the miraculous: Like the brightest stars, Damon’s energy consumed him, even as it galvanized others. It’s that luminosity, carefully expressed by a devoted father, that makes this memoir so transporting."—MORE Magazine

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