Simon & Schuster, 2/5/2013
Trade Paperback, 358 pages
Trade Paperback, 358 pages
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.My Thoughts:
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.
Immortal Bird by Doron Weber is a father's tribute to his son, Damon, who died too early. Damon was born on August 8, 1988 with a congenital heart defect that required two open heart surgeries (the Fontan procedure) when he was a baby. Years later, a month after 9/11, it becomes clear to his vigilant and hyper-alert parents that Damon is not thriving and something else may be wrong. Damon has PLE, protein losing enteropathy.
After exhaustive medical checkups and intensive research by Weber, all signs seemingly point to the PLE being a result of the Fontan operation. Doron learns that if the medical community cannot find a way to stabilize Damon's PLE, he will eventually need a heart transplant. Finally it became clear that Damon needs the heart transplant, which brings in its wake a whole new set of concerns. One clearly evident failure was the medical community in charge of Damon's case - or rather their lack of taking charge and following through with the proper attentive need for care and concern - and even proper medication.
At the same time that his parents are seeking a way to help him, Damon is maturing and showing himself to have the potential to become a great actor. Even while clearly not well, he still manages to thrive socially as much as he is able to and explore his talents and abilities.
Is this a memoir for everyone? No.
For some people Immortal Bird would simple be too painful to read, especially if you have had a family member or close friends struggling to endure and maintain the attentiveness a long-term illness or condition requires. It is a tribute from a heart-broken father to his son that recounts the triumph and the pain. How fragile is our hold on life and yet even a life cut short has value and meaning. I just don't think this is a memoir I could recommend to some people because they couldn't emotionally handle reading it.
Members of the medical community might want to read it as a cautionary tale on what not to do. There were some cringe-worthy medical moments that could have been avoided.
Highly Recommended - but this is not a book for everyone.
Doron Weber is an American author best known for his critically acclaimed memoir, IMMORTAL BIRD (Simon & Schuster, hardcover 2012, paperback 2013. Born on a kibbutz in Israel in 1955, Weber is a graduate of Brown University (B.A., 1977) and studied at the Sorbonne and Oxford University (M.A., 1981), where he was a Rhodes Scholar In addition to his writing and his career in the nonprofit world–he has held positions at the Readers Catalog, Society for the Right to Die, The Rockefeller University, and since 1995, at the Alfred P. Sloan Foundation where he has created seminal programs in science and the arts–Weber has worked as a newspaper boy, busboy, waiter, and taxi driver, has competed as a boxer and triathlete, and, in the summer of 2012, biked 3400 miles in the Big Ride Across America.Disclosure: I received an advanced reading copy of this book from Simon & Schuster and TLC for review purposes.