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A Family Memoir
Table of Contents
About The Book
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: his father Doron’s relentless search for answers in a race against time.
Immortal Bird is a stirring, gorgeously written memoir of a father’s fight to save his son’s life.
I am walking up Prospect Avenue with my twelve-year-old son, striding side by side along the mottled sidewalk, when it strikes me he has not grown for a while. I look across at him. Damon’s head—that flame-red, leonine head—still falls below my shoulders, roughly where it had reached the previous year. He is so vital and engaging one easily forgets his size. But now his clipped stature feels like a withholding of fruition, as if his legs were young shoots held back by a clinging, invisible vine. I want to reach down and cut him loose so he can sprout. I don’t want a big change but I feel he needs a little nudge, one more click to get him over the next hump of development.
“So how was school?” I ask. Damon wears baggy jeans, a gray hooded sweatshirt, and Adidas sneakers, with a Walkman round his neck and a cell phone on his belt loop.
“Good. I got picked to read my essay for Kick Butts day.” He speeds up as we talk, swinging his arms to keep up with me, and explains that Hillary Clinton, now running for a Senate seat, is part of the visiting delegation for this stop-smoking educational campaign.
“Congrats.” I salute him. “Need any help with the essay?”
“I’ll do a draft and show you,” Damon says. We stop at Venus Video and select a musical for his audition. “Can Jon sleep over Saturday?” he asks.
“If you get your work done, I don’t see why not.” I pay for the rental.
“Yes! Thanks, Dad!” Damon smiles as we exit, his cerulean eyes dancing with open vistas. But as we continue strolling up the avenue, I again ponder his unsprung height.
He is due for a growth spurt—he is overdue—and I don’t need a tape measure or a doctor to verify my judgment. I can always gauge the slightest change in his body, to a hair’s breadth, and I have a built-in monitor of his progress embedded deep inside me, like a microchip—or is it a mirror? If we are not exactly joined at the hip, we have more than the usual father-son bond connecting us.
Damon is the oldest of our three children. Born on 8/8/88—a date so fortuitous that in China they performed premature Caesarians to snag this birthday—he was an only child for nearly five years before his brother, Sam, arrived. For most of this time, he also was a sick child who required, and received, extraordinary love and attention from his mother, Shealagh, and from me. Even after his sister, Miranda, appeared in 1995, a healthier Damon remained the focus of our family, the pacesetter.
He was born with a malformed heart, for no known reason.
Most notably, Damon lacks a second ventricle like you and I have. His good ventricle, the left, pumps red, oxygen-rich blood throughout his body. But when the blood returns from his body to the lower right chamber of his heart—blue blood now because it has given up its oxygen—there is no second ventricle to pump it back into the lungs, where it can pick up fresh oxygen and expel carbon dioxide. So Damon was a “blue baby” whose organs and tissues did not get enough oxygen. He was smaller and weaker than other infants and his gross motor skills developed more slowly. But his brain, his manual and verbal dexterity, and his imagination never lagged.
By age four, Damon had undergone two open-heart surgeries, and the second operation, known as a modified Fontan, alleviated his problem. A “passive flow” system, it bypasses his right side altogether and shunts the returning blue blood directly to his lungs, where it can take on vital oxygen and discharge carbon dioxide.
After the modified Fontan, Damon’s body received sufficient oxygen-rich blood, and he flourished.
He grew and scrambled back onto the growth charts for height and weight, even catching up to some of his friends. His color improved, his energy increased, and he became physically more active. He is a tortoise, not a hare, but he is intrepid and takes delight in activity of all kinds, from karate and kayaking to soccer and skiing.
Damon is in seventh grade now, attending the Salk School of Science in Manhattan, where he excels academically. He also is an actor who performs in every school play and then in more advanced theater workshops outside school. And he’s become increasingly popular in middle school, more of a star than he’s ever been. When he spiffs up his unruly red hair and dons a dress shirt for the school dance, cruising the room like a confident young blade, he makes an impression. He outshines the taller boys because he actually dances and talks to the girls.
Damon is never going to be the biggest kid in the class or run a four-minute mile, but otherwise he’s in great shape. He’s been healthy for the eight years since his last operation and free of all medications. He sees his cardiologist every six months and she marvels at his progress.
I am keenly aware of all this as we walk together this afternoon. We have lived through a protracted nightmare and survived to talk about it as a page from history, a backstory. I know all about patience and keeping your eye on the fundamentals. Shealagh and I have our own set of milestones for Damon, outside the standard configuration, and we feel inordinately proud of his advancement and the kind of person he’s become.
So on this early fall day of the first year of the new millennium, with the soft yellow leaves raining down from the sky and starting to blur the margins of the pavement, I dismiss my concerns as exaggerated, a common defensive ploy to contemplate the worst, just so you can say it ain’t so.
We turn into the wide embrace of Terrace Place, with the great park at one end, and walk up the front porch into our two-story brick house with its long driveway and small backyard that boasts a bona fide peach tree and a fig tree, our own patch of Eden.
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.
Immortal Bird Chapter 3
When the morning of his hernia operation dawns, we tell ourselves it is a routine procedure, but with Damon’s medical history, nothing is routine. We envy all our friends who freak out over their kids’ colds.
On the ride in, Damon and I discuss a new play I’m supporting with Alan Alda playing the Nobel Prize–winning physicist Richard Feynman. I work for a well-established philanthropic foundation and one of my roles is to help develop plays, films, and television shows with science and technology themes.
We arrive at the hospital, sign in, and go to the fourth-floor pediatrics ward.
The secretary makes several copies of our insurance and asks us to fill out the same form about Damon’s medical history, several pages long, for the umpteenth time.
A nurse takes Damon’s blood pressure and temperature, weighs and measures him, and exchanges his familiar jeans and T-shirt for a hospital gown that ties loosely at the back. A hearty, decent sort, she means well but her idea of small talk is to ask him three times if he’s nervous. “A little,” Damon says to mollify her.
Another nurse comes in to start an IV. Damon has pale, spidery veins and sticking him requires precision. After an initial adjustment, she gets the line in.
Then a young doctor, bright-eyed with self-importance, saunters in and beams at Damon. “Hi, I’m the resident. Have you ever had any serious medical conditions?”
At first, we think he’s kidding, but he’s not. Damon turns away, too polite to sneer, and Shealagh groans in disbelief. I fire off a rapid, testy medical summary. “Next time do your homework and read the chart!” I say. He slinks out of the room, red-faced.
We wait with other tense parents and their sick children until they send us to the preoperative holding area. A fountain of gurgling water, pink-lit, is meant to soothe our nerves. A tall doctor with a Hungarian accent walks in and mumbles that they want to put Damon under general anesthesia because a local injection could lower his blood pressure, and his pressure is already low. The anesthesiologist tries to rush our consent but we won’t give it until he answers each of our questions and reviews all the options. General anesthesia carries a known risk of mortality, compounded, like everything else, in Damon’s case, and we have learned not to take anything for granted.
The surgeon arrives in his scrubs and quickly runs through the procedure. An affable, highly competent man, he does not anticipate problems and wants to get started. We each ask questions, including Damon—“When can I go back to my karate class?”—before signaling that we are ready. The nurse releases the brakes on the gurney and the anesthesiologist, turning to follow the rolling bed, suggests we say our good-byes now.
“No,” I tell him. “We always go into the operating room with our son. It’s part of our routine.” Damon watches us from the gurney, upset—we touch his arm to calm him—before the surgeon tells the anesthesiologist it’s okay for us to accompany our son.
We quickly throw yellow moon suits over our clothes and don protective face masks before plodding down the corridor beside Damon’s gurney like a team of sterilized astronauts. We turn and push through sealed doors into the operating theater.
It’s a large, cool, brilliantly lit room with state-of-the-art medical equipment surrounded by a tinted observation booth. A lone bed rises in the center, with a giant stainless steel arm arcing above it. A modern setting for sacrifice and, hopefully, healing—a place for testing one’s faith.
I tell myself it’s not as dire this time—this is standard procedure for a hernia—but still, I can’t believe we’re going through this ordeal again.
I keep up a running banter with Damon as they wheel him into position and Shealagh chimes in with reassuring comments. Damon remains stoic and game throughout but he likes having us nearby. I want Mom and Dad to be the last thing he sees when he closes his eyes and the first when he opens them again.
Damon climbs onto the narrow steel bed and they immediately place a mask over his head and tell him to inhale. A team of nurses, doctors, and assistants attaches lines and sensors to Damon. They prick his finger with a needle and he says “ouch” through the mask, but then the nitrous oxide reaches his central nervous system and he begins to laugh. We watch his lips pull back over his large front teeth all the way to the gums as he giggles uncontrollably. His big face with the bright red hair and pale skin fills with induced mirth. Then he is out cold. An array of monitors reads live data input from his unconscious body. We kiss him one last time and leave the operating theater.
We sit in a common room with gray lockers and a coffeepot. We make our calls, try to read the paper, stare into space.
The wait that lasts an eternity.
At some point, the surgeon emerges and walks toward us. We scour his face and body language for clues to our son’s fate. He reaches us and immediately says, “Everything’s okay.” So time begins again, and now we can listen to what he says.
It was a surprisingly big hernia that demanded more surgery than anticipated—“The hernia of the week,” the surgeon confides with a trace of professional pride—but all is well now. We should see improvement within seventy-two hours. Damon will be sore for a few days but the rupture is repaired and the problem solved.
We thank the surgeon profusely, then go to the recovery room to see Damon.
“Hi, sweetie.” Shealagh hugs Damon, who’s groggy from the anesthesia.
“You did great, D-man.” I kiss his brow and congratulate him. He smiles weakly.
We sit by the bedside, each of us holding one of his pale, slender hands. We feed him ice chips until he’s permitted to drink.
The next morning we leave the hospital and take Damon home.
Everything seems to have gone well. Damon had a hernia, which any healthy person can get, and now it’s fixed. There is no apparent connection to his underlying heart disease, nor any long-term ramification. He’ll be back at school within a week and right as rain. We had a spot of bad luck but it’s behind us now.
We try to reassure ourselves with this official prognosis but sense in our depths that something has changed, some seismic but as yet undetectable shift.
Something has changed, but we do not understand it yet.
Reading Group Guide
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Damon Weber was born with a malformed heart. By the time he was four years old, he’d had two open heart surgeries. The second, an operation known as the Fontan procedure, seemed to solve his circulatory problems. But eight years later, teenaged Damon begins to experience new and puzzling issues. He’s diagnosed with a protein imbalance called PLE, a condition that occurs in approximately 10 percent of children who have had the Fontan operation. All of the Webers’ attempts to manage the condition come to nothing, and they make the weighty decision to put Damon up for a heart transplant—an operation that should both cure his protein imbalance, and eliminate all of his cardiovascular health problems. But in a wrenching reversal of expectations, an infection caused by the transplant costs Damon his life and the Webers their son.
Immortal Bird, written by Damon’s father Doron, takes the reader through Damon’s life, revealing a strong and talented boy who, despite enormous odds, lived a life more active and varied than that of many average teenagers. He chronicles their family dynamics, the vagaries of the U.S. health care system, and Damon’s spirited battle for wellness in the face of chronic illness, but above all this memoir is above all about the intense bonds between father and son.
Topics & Questions for Discussion
1. Children with chronic illnesses are often described as brighter, wiser, and more engaged in life than their healthy counterparts. Do you believe that suffering can shape personality in a positive way? Do acknowledged limitations prompt people to try harder, live more fully?
2. Was it difficult to follow the more technical passages concerned with Damon’s medical conditions? How did these passages affect your reading experience?
3. How do the bright moments in the book (for instance, the family’s trips to the Isle of Skye, Damon’s acting) balance with the darker episodes? Do you appreciate the happy moments more because of the dark ones, or do the dark moments only make the happy ones that much more bittersweet?
4. How did reading Damon’s blog posts affect you? Were you surprised that Doron chose to include them? What do they offer that Doron is unable to convey on his own?
5. Immortal Bird is a story narrated by Doron that focuses on his son Damon from the first to the last page. What did you think of the portrayal of Shealagh? What more might you have wanted to know about her, or from her perspective? What did you think of the portrayal of Sam and Miranda?
6. How does the depiction of doctors and hospitals compare to their depiction in with popular culture? For example, consider hospital/medical dramas such as ER, Grey’s Anatomy, House, and Nurse Jackie. What does the proliferation of these dramas say about our expectations of our doctors and caregivers?
7. Authors sometimes choose to deal with their grief via fiction, albeit fiction closely modeled on real life. Can you imagine reading Immortal Bird if it were a novel? How is the experience of reading a fictionalized true story different from reading a memoir, in which the author acknowledges that memory is faulty and that names and situations may have been changed?
8. The Webers had good health insurance to fund the best care available for Damon, but even that wasn’t enough to keep him alive. Discuss the differences personal funding makes and doesn’t make in health care. Does this book change your opinion of the U.S. system at all?
9. Aside from questions of funding, there are broader flaws in the health care system exemplified by the Webers’ experiences. The need for a patient advocate, access to doctors familiar with the medical details of the case, and the family’s limited access to information regarding Damon’s health, all play a role in Immortal Bird. What do you believe is the cause of these problems in the system?
10. A memoir is, by definition, a one-sided account. Would you be interested in hearing the doctors’ and hospital’s side of the story? If so, who in particular would you want to hear from?
11. In the epilogue, Weber notes that Dr. Mason testified that Damon’s records were lost. What do you think of that?
12. The process of writing Immortal Bird was redemptive for Doron, a way of honoring Damon’s memory, but there is a more universal value to the book. What about Damon’s story makes it relevant to more than just his family?
Enhance Your Book Club
1. Damon was a talented actor active in his school’s drama program. Support your local actions by going to see a show.
2. Watch “New Money,” the episode of Deadwood in which Damon appears (Season 2, Episode 3). Discuss the experience. Does it change the way you pictured Damon?
3. Doron works for the Alfred Sloan Foundation, which supports research in science, technology, and economics through grants. You can learn more about the Foundation and the projects it supports at www.sloan.org.
4. Immortal Bird takes us inside hospitals from a patient’s viewpoint, but what about the other side of the equation? For an inside view of a hospital, check out Complications and Better by Atul Gawande, which chronicled his experiences as a surgeon.
A Conversation with Doron Weber
In the epilogue, you say that writing this memoir “was the one gift I could still give him, and give to the rest of my family. And it was the only place I had left to go for myself, since I could not abide living in a Damonless world.” Has the writing process changed your relationship with Damon or your memory of him?
Short-term, writing allowed me to defy or circumvent Damon’s death by bringing him back to life and living with him on a daily basis for several years after he was buried. The book is, among other things, an expression of my love for him and since I didn’t ever get to tell him how much I loved him in life—I tried but it’s never enough—the book enabled me to more fully express that love in art. Damon is so vivid to me I can’t imagine ever forgetting anything about him but I know that’s an illusion that will be undermined by the ineluctable law of time and memory, so the book is also a hedge. It bolsters and consoles me to know that I can open this memoir on any day and find my son there, alive and vibrant on the page. It also means he lives on in the world, and other people will get to know him, even after I’m gone, so he has not been erased.
How were Shealagh, Sam, and Miranda involved in the writing of Immortal Bird? Did you consult with them on any incidents or experiences? Have they read the completed book?
Shealagh, Sam, and Miranda were all very supportive of my writing this book, but they were not involved in any direct way. Writing is a solitary activity. The memories are almost all mine but if I was unsure of something or if I just wanted another perspective, I would ask Shealagh or the kids what they remembered about a particular day or event. Shealagh is especially good on visual detail and might tell me it was his khaki hat not the blue one or she might bring up a detail I'd forgotten. Shealagh also provided some great memories of gathering costumes and props for one of Damon’s plays. But generally she found this process very painful so after a while I stopped asking her. She remained completely supportive of what I was doing but she could not bring herself to read the book until the very end, after it had been through several revisions and was about to go to press. She loved it and only asked for the minutest changes or corrections, all of which I made. As of this moment, the kids have not read the book, although I did read them the chapter when we first got our dog, Freddie, which they said they liked. I also consulted them about the title, Immortal Bird, and they insisted I keep it when others wanted me to change the title.
What compelled you to include some of Damon’s blog posts in the book? Was it a hard choice to make?
I wanted to get Damon’s voice into the book as much as I could and not have it be meditated by his father or by anyone else. Damon was a wonderful writer and had his own distinctive style and vocabulary and sensibility, and I wanted the reader to hear from him directly. Nothing I wrote about Damon could be as effective as Damon speaking in his own voice. Of course I was judicious in my selections and tried not to include anything too hurtful or embarrassing. I only wish there had been earlier blog posts so we could have had more of Damon’s voice in the book.
What other memoirs and/or authors did you look to for inspiration during the writing process?
I only read one memoir, or any book of any kind, for this book, and it was Death Be Not Proud by John Gunther, because I had read it in third grade and had never forgotten it. When I reread it after Damon’s death, I was astonished to learn that the protagonist was the same age as Damon and had actually been treated at the same hospital over 50 years earlier. (It was a different age but there is no hint of a misdiagnosis or mistreatment of any kind). The book still works for me and it could not be more relevant. Today it seems strange to me that as a happy-go-lucky ten year old kid with no experience of tragedy, I could have been so deeply affected by this book about a father’s loss of his beloved son. It shot a hole through my heart that I can still feel—as if the universe was sending me a signal from the future…I opened one other memoir while writing my book, read two pages, and stopped because I knew what I wanted to do and this author was doing something different. One gets very focused and pragmatic while writing, or at least I do. I also have a full time job that involves lots of required reading—books, plays, screenplays—so I needed to use every available minute I had to write, not to read. This book was drawn directly from life and shaped by my best recollection and rendering of events, but I did study literature in college and have written other books so I’ve been influenced by many writers who are invoked directly or indirectly.
Because your family had access to health insurance, you were able to afford procedures like Damon’s heart transplant, which many families in similar situations may not have access to. What is your stance on health care reform?
Our family could not have afforded Damon’s heart transplant if we did not have good health insurance, which I got through my job (as I explain in the book, the reason I went from freelance writing to a 9-5 job was precisely to get health insurance for Damon). Health care reform is a big subject and I am no expert but the fundamental problem in my view is that it is no longer about caring for patients but about the bottom line—it is no longer a system of health care but rather a health business. We need to return to the patient as the primary unit of focus and attention. The doctor’s role, their raison d’être, is to help the patient get better and the entire system must revolve around what is
best for the patient. There are many great, dedicated, and exemplary physicians but there are also terrible ones who should not be practicing. We should reward the good ones and throw out the bad ones because the stakes, as Damon’s care demonstrates, are literally life and death.
During one of your vacations to the Isle of Skye, you considered relocating your family there permanently but ultimately decided against it. City-dwellers lament the hustle and bustle, but also find it difficult to give up the benefits. Do you still feel this way? How does your family balance the conveniences of city living with the drawbacks?
The Isle of Skye is a very special, blessed place where my wife has roots and my family had been vacationing for many years, so that thought was specifically about Skye rather than about city-country living. There are advantages to each and ideally one’s life should strike a balance. Damon loved nature and Skye was a kind of paradise though he also loved our country place in the Catskills and he was very happy living in New York City with its rich social and cultural life. My point in that chapter is just how desperate we were to find a safe haven for Damon where we might be able to shelter our precious son and ward off the illness that was stalking him.
Due to your work with the Sloan Foundation, you’re a public figure. Yet you kept Damon’s health issues off the radar, without even your assistant knowing what was happening. Why was it so important to you to keep the situation private?
The pressure of managing Damon’s illness was relentless and it threatened to overwhelm our lives so I had to keep it fenced off from my daily job, which is also fairly demanding and on which we depended for our economic survival. I thought it best to be judged on my performance and as long as I continued to perform at a high level and maintain my professional decorum, no one needed to know about our private ordeal. Like many people with reasonably high profile jobs, I work in a competitive environment and misfortune, despite expressions of sympathy, can be construed as vulnerability. I was fighting on enough fronts already. Keeping things separate also allowed me to “forget” about my pain and isolation and focus on something besides Damon while I was at the office. Work offered me a reprieve of sorts and even when it didn’t, I felt I had no choice.
Your personal knowledge of science and medicine, along with the connections you had and were able to create, helped you understand what was happening to Damon. What advice do you have for parents dealing with similar issues without access to the same resources?
I think where a loved one’s survival is at stake, every individual must take personal responsibility for their care and educate themselves as needed. You don’t need any formal training and you should not abdicate this role to the “experts.” They generally know less than you think, though it’s more than you know, so you must do some homework. There are enough free resources to guide you and you should also consult with as many physicians, patient families, and consumer groups as you can. Ask questions and demand answers that you can understand and that make sense to you. No one will care as much, or be as motivated, as you. Remember that doctors are human and flawed. The best ones will admit how much they don’t know. And even when the doctors are good, the system is broken, so you must stay on top of things. Medicine is still as much art as science. You need to be personally involved at every level.
You and Shealagh made the difficult decision to pursue a lawsuit against Dr. Mason and the Columbia University Medical Center. Are you satisfied with the outcome of that suit?
I cannot comment on the outcome of the lawsuit because there has been no outcome. Columbia Presbyterian has not accepted any responsibility or accountability for its negligent management, in our opinion. Columbia Presbyterian has dragged its feet and avoided dealing with the facts for many years. As I report in the book, after stonewalling for over three years about producing the relevant medical records for Damon, Dr. Mason testified at her deposition that all those records had been shipped to an off-site storage and regrettably “could not be located despite all best efforts.” I think such an outrageous claim speaks for itself. This is unacceptable conduct from a supposedly world-class institution and people can draw their own inferences. I think Dr. Mason needs to be held accountable for her conduct and the institution needs to take corrective action to prevent such a tragedy from occurring again to other families.
What was the best part off the memoir writing experience? The hardest?
The best part was being able to spend all that extra time—several years—hanging out with Damon and talking and listening to him and being together. He was totally present and alive for me while I wrote about him. And as I say in the author’s note, he also guided me and kept me company throughout the writing, so that I never felt at a loss creatively. The hardest part was having to write many painful scenes where I literally had to stop in the middle and lie down to catch my breath and wait for the debilitating anguish to pass. Sometimes I would just have to leave the room and take a few days off until I could emotionally replenish myself. I burned up a lot of my insides going back into the inferno, but it was nothing compared to Damon’s suffering.
What one thing do you hope readers will take away from Immortal Bird?
Damon. This book is first and foremost about a remarkable, glorious young man and I want readers to get to know who he was and what his unnaturally short but full life was about. If they can come away with a palpable sense of that, then I will have succeeded.
- Publisher: Simon & Schuster (February 5, 2013)
- Length: 368 pages
- ISBN13: 9781451618075
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Raves and Reviews
“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)
“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
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