This reading group guide for Immortal Bird includes an introduction, discussion questions, ideas for enhancing your book club, and a Q&A with author Doron Weber. The suggested questions are intended to help your reading group find new and interesting angles and topics for your discussion. We hope that these ideas will enrich your conversation and increase your enjoyment of the book.

Introduction

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.