I received this book for free from the publisher / TLC Book Tours in exchange for an honest review. This does not affect my opinion of the book or the content of my review.Immortal Bird by Doron Weber
Published by Simon & Schuster on February 5, 2013
Genres: Memoir, Nonfiction
Source: the publisher / TLC Book Tours
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A medical mystery and a remarkable passion for life lie at the heart of a gifted boy's fight to survive. Born with a congenital heart defect that required surgery when he was a baby, Damon Weber lives a big life with spirit and independence that have always been a source of pride to his parents and an inspiration to his brother and sister as well as his friends. But when Damon's triumphant coming of age is threatened by a new illness, his father embarks on a search for answers in a race against time and a seriously flawed system.
(from the back cover)
Damon Weber was born with a congenital heart defect–his heart lacked the second ventricle that pumps old blood back into the lungs to be oxygenated. By the time he was four, he’d had two open-heart surgeries, the second of which seemed to completely alleviate his problem. At age twelve he was still a little slower (physically) than other kids his age, and his growth had been stunted as a side effect of his abnormal heart, but overall he was a seemingly normal, healthy, active pre-teen.
Soon after he turned 13, Damon started to feel sick; he was tired, he was having problems breathing, and his face and abdomen were becoming bloated. After tests done at Columbia Presbyterian Hospital, the Webers found out that Damon had Protein-losing enteropathy (PLE), a disease that shows up in about 10% of the children who have had the heart surgery Damon went through as a toddler. No one knows why PLE occurs or how to combat it, really. There is no cure. All Damon and his family could do was try the different therapies that have had some effectiveness in other patients. If none of the other therapies worked, Damon’s last resort was a heart transplant…which comes with plenty of its own risks.
Damon ended up needing the transplant, which he received, and he seemed to be doing very well. He spent a month in the hospital, was able to go home to continue his recovery, and he felt good (compared to how he felt before the transplant). Things were looking up.
Damon went home from the hospital on February 22, 2005. On March 30, 2005, Damon died of a post-transplant infection that could have been taken care of–avoided, even–with proper medical care. Immortal Bird is a family memoir written by Damon’s dad that memorializes what a great, talented, strong kid Damon was, as well as an indictment of this country’s flawed health care system.
This book is truly heartbreaking, but it’s also uplifting and inspiring. Damon may have lived for only sixteen years, but he did everything he possibly could in that time. He very rarely let his illness stop him from doing all of the things he wanted to do. He was a talented stage actor who made friends easily and had big dreams of someday having a career in diplomacy. He was given a small speaking part in the HBO series Deadwood (that aired just a few days before he died). He and his family spent their summers in Isle of Skye in Scotland. It would take up too much room here to list everything Damon was able to do in his short lifetime, despite not feeling well for his last four years. Reading about Damon–his positive attitude and his accomplishments–was my favorite part of Immortal Bird.
I have a couple of issues with Immortal Bird, though, and because of the subject matter, I almost feel like a jerk even bringing them up. Regardless, I feel like they need to be pointed out. Both of my issues have to do with Doron’s (the author’s) general attitude.
First, the Webers are a relatively wealthy, privileged family. Most of what Damon was able to do during his lifetime–and the medical care he received–can be attributed to this privilege. Doron is well-connected and has resources to draw on that the average American doesn’t have. And that’s great in Damon’s case–I’m certainly not knocking all of the fantastic things he was able to do in such a short time. I’m glad that his short life was so full and rewarding. However, nowhere in the book is this privilege acknowledged. Nowhere in the book does Doron Weber say, “I know how lucky we were to even be able to get the expert medical care Damon needed. I know I was well-connected above and beyond the average citizen.” Maybe it was supposed to go without saying, but a little acknowledgement of their privilege would have been nice in the context of the story. The expert medical care ended up being extremely flawed, even for a privileged family like the Webers, so what does that say for all of the people who don’t have that kind of privilege? Even a short paragraph pointing this out would have gone a long way.
Second, nowhere in the book does Doron Weber acknowledge the heart donor or the donor’s family, aside from making a very tasteless joke that Doron’s 16-year-old son has to point out was just wrong. Nowhere in the book does Doron show any kind of appreciation for what the donor and his/her family must have gone through in order for Damon to have a new heart. This was a huge oversight in my opinion. Much of what Doron Weber does (or doesn’t do) during his son’s illness just makes him look like a selfish, privileged jerk. That’s not to say that I wouldn’t have done many of the same things in Doron’s position; I would have used my privilege in any way possible to make sure my son was being taken care of. But again, some kind of acknowledgement of the donor and his/her family would have gone a long way.
The best parts of Immortal Bird are the parts about Damon as a person. Although part of Doron’s attempt with this book was to point out how flawed our health care system can be in this country, the only people who that part of the book will benefit are the wealthy and privileged. If the average American is looking for advice about what to do in the same situation, they aren’t going to find it in Immortal Bird. Regardless, it’s a wonderful memorial to Damon and his time with his family, and it’s worth reading just for that. I highly recommend it to people who enjoy reading good memoirs.