Blog Tour: Immortal Bird: A Family Memoir, by Doran Weber–Review

In Immortal Bird, writer Doran Weber narrates a heartbreaking memoir telling of his efforts to deal with the very serious illness of his son Damon. Weber seems to be attempting to create some sort of legacy for Damon, while demonstrating some of the significant shortcomings that can occur in terms of patient care, even in some of the best medical establishments in the world. And yet, Immortal Bird really reads like a father’s attempt to deal with the loss of his son and to try to find some sort of meaning in what can only be called a senseless, needless tragedy.
Damon Weber was born, his father tells us, with a serious heart condition, one that he was not necessarily expected to survive. And yet somehow, Damon manages to grow into an active, bright, and relatively healthy teen. After a series of seemingly minor health problems, Damon is diagnosed with PLE, a relatively rare condition that has to do with the body’s inability to process protein. After a series of procedures and much medication, Doron Weber with Damon’s doctors decide to pursue a heart transplant as the only way to combat PLE, which will be fatal if left untreated. Although Damon survives the heart transplant, a tricky high-risk procedure, and seems to be recovering, a relatively common complication is overlooked by Damon’s staff of doctors who are characterized as uncaring and incompetent, eventually resulting in Damon’s death, a death that could have been prevented if only the medical staff had been more attentive, as Weber writes it.
Immortal Bird as much as anything else strikes me as a father’s attempt to work through his own grief over the loss of his precious child. In some ways, this work is much more the writer’s story than it is Damon’s. Weber narrates his perceptions, observations, and experiences of dealing with his son’s illness. And although Weber certainly describes Damon’s physical and emotional suffering as well as the difficulties faced by Shealagh, Damon’s mother and Weber’s wife, this memoir is really more about what’s going on with Weber than it is about Damon directly. And it seems to me that this fact speaks in significant ways to the very nature of grief. I am reminded of Joan Didon’s Year of Magical Thinking and C.S. Lewis’s A Grief Observed, both classic works exploring the nature of grief. And yet, what we can see in both of these is that in important ways grief is not exclusively or even more significantly about the loved one who has been lost but about the subjective attempt of the survivor, the lover to deal with the world around her in light of the loss of the loved one. In a similar fashion, Immortal Bird is less about Damon himself and more about Weber’s years-long managing of Damon’s illness and Weber’s attempt to see the world again, anew after the loss of his son. In this way, Immortal Bird becomes an invitation to the reader to meditate on the nature of grief itself.
Additionally, Weber highlights some frightening shortcomings in terms of medical care in the United States. Weber makes it clear that from the time Damon is born with a serious heart condition Weber, Damon’s father, is Damon’s best advocate as Weber reads, researches, and becomes an expert on Damon’s condition. The Weber family is well educated and relatively privileged. And one gets the sense that Weber is able to educate himself and insist that his son receive the best care possible precisely because of factors directly related to socio-economic class. Yet, in the end, in spite of Weber’s best efforts on behalf of his son, Damon dies as a direct result of apparent negligence in one of the best hospitals in the United States. If this can happen to Damon, even with his educated, proactive father, how much more so to those who don’t have the opportunity to be so engaged in their own health care choices or those of their loved ones. If someone like Damon and the Weber family can fall through the cracks of the health care establishment, how much more so the majority of the American population who are relatively underprivileged. In this way, Immortal Bird reads like a call for health care reform and attention to patients’ rights that is a far cry from the current political debate regarding universal health care.
It’s always a bit challenging to evaluate a work that deals with intensely personal issues. This is doubly the case when it is a memoir dealing specifically with what feels like such an unjust death, the loss of a particularly vibrant, bright teenager with his whole life ahead of him. And yet, Weber’s writing does deserve a critique. There is something particularly self involved about this memoir, yet that seems to be connected to the very nature of grief. To write about loss is to examine how that loss affects the writer. One, however, feels sympathy for Sam and Miranda, Damon’s younger siblings, who somehow seem to get lost along the way; their needs seem to be overlooked because Damon’s are so much more pressing. I have to say, I’d have liked to hear more about Sam, Miranda, and Shealegh, Damon’s mother, rather than focusing almost exclusively on Weber’s own story, his attempt to deal with Damon’s situation. Additionally, although Weber is a skilled writer and a professional writer, there’s something about his descriptions of Damon that feel a bit trite. Damon is often described as bird-like in a variety of ways. This makes sense, particularly when we consider that he is much smaller and thinner than his peers because of his illness and that he seems to be wasting away before our eyes as the book progresses. But these repeated descriptions of Damon as “bird-like” don’t seem to fit with Weber’s repeated references to Damon as leonine, or lion-like, especially in reference to his halo of bright red hair. Although this description certainly captures something of the power and charisma of Damon that Weber seems to want to convey, it doesn’t quite fit with the writing of Damon as frail and bird-like. Also, Weber seems to repeat these descriptors so often that one finds it all a bit distracting.
My heart breaks for the Weber family and for Doran Weber in particular. Certainly, the loss of a child must be one of the most difficult things that any family must face. And the loss of Damon is particularly tragic. After facing and seeming to overcome so many serious health problems, it’s tragic and almost unbelievable that Damon ultimately dies because of simple apathy and incompetence on the part of those who are supposed to be some of the best doctors in the United States. Currently, the Webers have filed a wrongful death lawsuit against Columbia Presbyterian Hospital. As of April 2013, just after the eighth anniversary of Damon’s death, the suit remains unsettled. My heart is broken for this family and weeps on behalf of Damon himself.