A Beautiful Life
Immortal Bird, by Doron Weber. Simon & Schuster. 2012. 358 Pages.
Immortal Bird, whose title is taken from Keat’s meditative and fraught poem Ode to a Nightingale, is often painful and always heartrending. It is a father’s meditation on a son whose beauty and thespian skill astounded and moved him, a son who was born with a rare and debilitating heart condition.
What makes Immortal Bird so hard to read is Doron Weber’s painstaking account of the neverending hardship that accompanied witnessing his son’s initially gradual and then swift decline. Weber skillfully portrays how both he and his wife found their life centered around protecting and looking out for Damon, often to the cost of their other two children, and their own relationship. Weber’s wife, in particular, was severely affected by her son’s illness, her trauma taking an immense physical toll on her athlete’s body.
Weber is honest and blunt, even if his approach to parenting his son (“D-Man”) leaves you wondering at the propensity of American parents to treat their teenage offspring as precocious five year olds. He delves into the manner in which he and his wife, increasingly tense, fought in the years their child’s condition worsened. He pulls no punches in depicting his often confrontational conversations with the medical professionals he alleges bungled his son’s care. He allows us to see Damon as a typical teenager, if a teenager increasingly aware of his fraught condition, one who acts out and is occasionally disrespectful and hurtful in the way only a teenager can be. But we are always awed by Damon’s courage, his tenacity, his immense creativity, one informed by his terrible illness.
What makes for especially painful reading is Weber’s portrayal of medical professionals – and the world famous hospital that witnessed Damon’s death – as more concerned about public relations and saving their own skin. It is difficult to believe the extraordinary insensitivity with which Damon’s supervising physician behaved, as also a failing medical administration that failed to assign roles and responsibilities to its often offhanded and cavalier staff. Frankly, one does not want to fully accept Weber’s account. The prospect is too frightening.
Weber’s fury – and the mingled fury and acceptance of his son – are chastening. This is an extraordinary story and an extraordinary father, one who raises heaven and hell to find the help his child needs, often to enormous personal cost.
Damon Weber died at the age of sixteen, at the hospital supervising his care. Before his death, he had been recognized for his immense acting talent, and was a member of the cast of a popular television show. A sensitive, forthright and darkly ironic child, he was beloved to his best friend and romantic interest, as well as to his younger siblings.
Given how honest and direct Weber’s memoir is, one is disappointed by his closing chapters. Insensitive as this may sound, Weber forsakes his blunt and emotionally rich narrative for overwrought sensibility more appropriate to the work of Victorian sentimentalists. At Damon’s deathbed scene, one is reminded of Dickens’ Little Nell. Weber is also amazingly obscure on the subject of his two other children and their negotiation of Damon’s illness, as well as the manner in which they were often sidelined, neglected, or silenced. To make this memoir truly an authentic story about a lovely child and sibling, one precious in myriad ways, their voices – and their negotiation of closure – need to be heard.