I am completing a book on memoirs that refer to therapy, a project that has occupied me for the past several years. It has been a riveting to consume and probe such a rich trove of therapeutic encounters, some enthusiastic and even passionate, some skeptical and even dismissive. There are memoirists who feel their lives have been transformed by therapy, and others who land more equivocally, unsure how it has affected their lives. My hope is that the book provides candid depictions of what to expect for anyone who is contemplating therapy. In addition, my hope that is that mental health professionals might benefit from listening to patients speak in their own words, unmediated by our expectations or the constraints that researchers deploy in their work. It is salutary to tune into what patients can tell us about what therapy has meant to them.
Although my book engages around 50 different memoirs, I have ended up reading many more, including extraordinary ones that just did not fit in the final work. I will occasionally use this newsletter as a space to discuss books that, for better or worse, landed on the cutting floor. It has been an aim of this newsletter to bring new ideas to your attention, most often centering on the interrelated themes of emotions, mentalization, and therapy. However, I have also reserved space for taking on current social, cultural, and political topics that bear on our work and seem too pressing to ignore.
This month’s newsletter will discuss a book, Immortal Bird: A Family Memoir, by Doron Weber, which I happened upon, even though it was published a while ago, in 2012.[i] The book has had a powerful, even haunting effect on me, and writing about it, no doubt, is a cathartic exercise for the wide-ranging emotions that were generated.
Weber’s memoir tells the saga of his son, Damon, born with a congenital heart problem (missing a second ventricle), who undergoes two open heart surgeries, then fares well for several years (with a fortan surgery), only to develop PLE (protein losing enteropathy, a disease about which little is known),[ii] then undergo a procedure that had complications (fenestration), and ultimately requires a heart transplant (with a 1/3 mortality rate). Damon dies at 16 years old, after medical mismanagement misses an infection that he developed after the transplant. Weber is outraged by this and files a lawsuit, the result of which is not resolved, as the hospital cannot locate the records (see one of the questions about the lawsuit under A Conversation with Doron Weber: https://www.simonandschuster.com/books/Immortal-Bird/Doron-Weber/9781451618075).
Weber’s memoir is a sad tale representing what is a universal fear: the child dying before the parent. The memoir details Damon’s life and the extraordinary efforts of a parent who is completely devoted to seeking help for his son and to battle a frustrating healthcare system, where it is apparent that you must stay on top of things because no one else will do it. As Weber explains, “We track all his medications and monitor all his readings and we report all his symptoms. But no one seem to be monitoring us. The doctors are unreliable or absent, and the nursing is erratic” (p. 284). Weber is highly educated and fiercely determined; the family has access to the best doctors; so, it is especially disconcerting to hear that Damon’s care was so lacking.
At the center of this memoir is the fascinating account of the father-son relationship.[iii] Weber has a forceful character and is unrelentingly competitive (he was a boxer and former Rhodes scholar). His passion and pridefulness is evident from beginning to end. At times, Weber seems like a super-parent who especially delights in his son’s triumphs (like getting accepted to Brooklyn Tech, appearing in school plays. or learning how to ski), but he also enjoys when normal developmental milestones are met. Given Damon’s medical history, Weber avers: “I just want to have a healthy kid” (p. 80). He includes Damon’s own voice in epigraphs at the head of chapters that come from his son’s blog. The most touching example of the intimacy between them occurs before the heart transplant, when Damon snuggles with his father, and his father revels in being able to provide comfort to his son.
Other times, Weber’s intensity tips in a counterproductive direction. His family gives him the nickname of being “the barking dog.” After hearing the scary news about PLE from the doctor, he gets off the phone and screams: “You can’t take him from me…” (p. 55). His overzealousness is made apparent in many other interactions with doctors, when he turns up the intensity in ways that are intemperate. Weber has no patience for doctors who are trained to be optimistic and to minimize negative outcomes, and, in my opinion, he is justified in that the obligation of a good clinician is to discern how much (or little) to communicate.
Weber is not only hard on some of the doctors; he is hard on himself. For example, in grappling with the PLE diagnosis, he becomes unnerved by noticing his son’s reaction: “My son’s look pierces me. I’ve been his coach and his mentor from the start, and together we’ve developed a true collaboration and a careful winning strategy. But now we’ve run into a fierce hurdle I could not prepare him for because I knew nothing about it. By choosing not to warn me about even the possibility of such a setback—believing we were better off not knowing—Damon’s doctors have undermined my role and made me shirk my obligation to my son” (p. 65). Weber’s distress bleeds into his response to the doctors here, and leads him to judge himself harshly, a propensity that he later admits: “It could be my standards are too high or exacting, an occasional weakness of mine” (p. 260). Is it an “occasional” occurrence and is this appropriately characterized as “weakness,” or is Weber minimizing something about his character? Regardless, no one can blame a parent for being distraught and having such anguished thoughts. Underlying the severe self-judgement is the pain of not being able to do more to save his son.
As a mental health professional, it is natural to wonder if Weber or Damon or anyone in the family availed themselves of our help. There is only one relevant moment during the excruciating time, when Damon is dying. Weber mentions that “A psychologist appears and we send him flying” (p. 329). Timing is everything, and this might well have been the wrong time for the family. Still, the dismissive affect here made me wish that at a different time, Weber might be more receptive to receiving help in processing the howling emotions of losing a child.
In reflecting upon about the existential questions that are produced by such a tragedy, I found myself thinking about my own family history, which I am not equating with Weber’s. My sister died at 68 years old from multiple sclerosis, having lived fully, although her death affected my father’s will to live—he had aspired to live to 100, but died at 98, heartbroken at outliving his beloved daughter. Two other examples sprung to mind: Charles Darwin and Sigmund Freud. In John Bowlby’s biography of Charles Darwin (1809-1882), he argues that Darwin’s life-long struggle with psychosomatic complaints and depression can be tied to the illness and death of his mother when he was 8 years old.[iv] Darwin became depressed anew, after his father died at 82 years old in 1848; then more profoundly when his daughter, Annie, became sick in 1850 and died at 10 years old in 1852, a wound that Bowlby suggests “never healed.” He could not even bring himself to go to the funeral, and in his Autobiography, says that just thinking about Annie brought tears to his eyes (p. 297). Darwin reflected on how Annie’s death stirred up anxiety about the death of his other children. Moreover, he stressed the point that what could never be undone was that Annie’s bright future was obliterated (p, 297). Bowlby notes that “The suffering of others Darwin always found unbearable” (p. 298). In Weber’s memoir, he takes pains to establish Damon’s promising potential as an actor, so I would imagine that he might readily identify with Darwin’s pained sense of potential denied.
Freud lost his daughter, Sophie, during the 1918 flu epidemic on January 25, 1920.[v] She was an adult, married, with two children, living in Hamburg, but the loss was intensified because the family was not able to be together. In a letter to Ludwig Binswanger on April 12, 1926, Freud reflects on the loss with perspective: “Although you know that after such a loss the acute state of mourning will subside, we also know we shall remain inconsolable and never find a substitute. No matter what may fill the gap, even if it be filled completely, it nevertheless remains something else. And actually this is how it should be. It's the only way of perpetuating that love which we don't want to relinquish.” The emphasis on perpetuating love adds to Freud’s earlier reactions to the loss. In a letter to Oskar Pfister on January 7, 1920, Freud spoke of the devastating sense of loss, which included “a serious narcissistic injury,” and again in a letter to Sandor Ferenczi on February 4, 1920, where he concluded “Deep down I sense a bitter, irreparable narcissistic injury.” It is not obvious what Freud means here—is the narcissistic loss simply that the external loss feels like a part of oneself has died, or does it suggest that part of the experience is to glimpse that we will suffer the same fate? The latter would not have to imply an underlying selfishness or a lessening of grief for the other. However, the idea is a bit more challenging to our conventional social beliefs.
It is, undeniably, against the natural order of things for a child to die before a parent. It is an aberration, but it happens. This loss is not the kind of loss, even if anticipated. that can be digested easily or automatically. The meaning of the loss is likely to shift over time, and, in encountering it clinically, our job is, first and foremost, to make room for the vicissitudes, the narcissistic as well as altruistic pain, and the desire to preserve love as enduring.
[i] D. Weber (2012). Immortal Bird: A Family Memoir. New York: Simon & Schuster.
[ii] For more information about PLE, see: https://www.pennmedicine.org/for-patients-and-visitors/patient-information/conditions-treated-a-to-z/protein-losing-enteropathy-ple
[iii] Weber’s wife is also actively involved with caregiving for her son; Damon has two younger siblings; and there is a Holocaust background on both sides of the family.
[iv] J. Bowlby (1990). Charles Darwin: A New Life. New York: Norton.
[v] My account draws from original sources in J.W. Bernstein’s Freud, Spanish Flu and Covid -19 (https://www.freud-museum.at/en/blog-posts-details/articles/freud-spanish-flu-and-covid-19)
Thanks for writing and voicing support for my project.
Elliot
Elliott: what a fascinating project- the memoirs and all you intend to do with it!
I’m looking forward to reading more.
Christina