I have not blogged for several months but recently received such a long, beautiful letter from another father who lost his son that I felt compelled to post it (see below).
I am starting to outline some ideas for my next book but in the coming weeks I will try to catch up on Immortal Bird news including an article I published in Psychology Today about medical errors and the impact of Immortal Bird on the medical profession (“Can Physicians Learn from Their Mistakes and Self-Correct?“; a number of new, very positive blog reviews; and my upcoming reading at the Chautauqua Institution in the Hall of Philosophy the week of August 19, where Immortal Bird is one of nine official selections for the year from the Chautauqua Scientific and Literary Society and the featured book for Week 9, devoted to the theme of health care reform and innovation.
The letter below is from Daniel Abut, a man I met briefly when we both appeared on a panel for bereaved parents 18 months ago. Daniel lost his beloved firstborn son Santiago, a teen age boy like Damon, whose life was cut tragically short.
I hope that you still remember me. A couple of years ago, we were co-panelists in a panel of parents who lost children, which was moderated by Judy Pedersen at Overlook Hospital in Summit, New Jersey.
I wanted to let you know that, finally, I managed to read your beautiful book. I had wanted to read it for quite some time, but I could never find the right time to do it. I ended up using my 40-minute (each way) daily train commute to and from Manhattan to tackle it, which is not the ideal place to read something deep, because you often get distracted by passengers chatting, or the typical annoying girl talking on her mobile. But that didn’t happen with your book. Once I started reading it, I just couldn’t drop it. I was literally absorbed by it, so much so that, as I opened the book every day, the world around me disappeared, and I was kind of sad when the train arrived to the destination, because I had to stop reading it. And then I couldn’t wait for the next train ride, to see how the story would continue to unfold. I knew how it would end, but that didn’t make the story any less intriguing to read. As a reader, you wanted to see what was next for the two heroes (the son and the father), what new fight they would fight, what new challenge they would overcome, what everlasting memory they would share.
The book is extremely well written. Every word, every expression, every metaphor is in the right place. The book has poetry, has color, and overflows with love and emotion. Perhaps the best evidence I can offer to you of how well written I found your book to be is that, as I read it, the way you described Damon (both physically and in terms of his personality and character) I started to form an idea, in my mind, of how I imagined him. But I had never seen a picture of Damon. Until the moment when I had almost finished reading the book, and I found his beautiful photo in page 352. Damon looked exactly as you, using words only, had made me imagine him! His wild hair, his contagious smile, his expression of kindness, and love, and peace, and courage, and determination were all (almost to perfection) as I had pictured him in my mind.
There were many chapters and passages in “Immortal Bird” that I truly enjoyed. The description of the family vacation (without your wife) in the Isle of Skye, and the adventure of climbing Ben Tianavaig. The passage that discusses the visit of your old high school Shakespeare teacher, and the philosophical discussion that ensues. The chapters that describe the trip to California for the filming of Damon’s part in Deadwood. The magic chapter that talks about that snowy afternoon, only days before Damon’s heart transplant, when you had with your son the shortest (and at the same time longest and most everlasting) moment of shared love, when no words were needed. Talk about writing from the heart and with pure poetry! And I loved how, throughout the book, you kept calling Damon “D-man” (The Man)! Even the last few chapters, as the end drew closer, which were very painful to read (I cannot imagine how painful they must have been to write), do justice to the ordeal that you and your wife lived through, and, even then, you did not stop for a second to pour love on your dying child, until the very last moment.
One could inadvertently (and incorrectly) think that yours is a book about the death of a beautiful child gone too soon. It’s not. On the contrary, it’s a book about life, about how precious life is, and how much a courageous boy with fragile health was able to make of it. Damon may have lived only 16 years, but he lived them well, surrounded by love, exploring his passions, and touching and influencing a lot of people (you included). Too many people live 6-7 times longer that your son did, and largely because they take everything (life itself included) for granted, achieve a fraction of what Damon accomplished. Yours is also a book about love, about the unconditional, indestructible, everlasting love that an adoring father had (and continues to have) for his son, so much so that he would have gone to Mars, somehow, if a cure for PLE could have been found there.
While I was reading “Immortal Bird”, I couldn’t help noticing and identifying some common denominators and coincidences between your story and mine, some more important than others. We both lost our first child, which in both cases was a son. In both cases, the son gone too soon was a teenager. Both Damon and Santiago had Daniel as their middle name. And both of them died in March. Both D-man and Santi loved live, loved their families, loved spending time with their friends, loved traveling, and loved videogames. And both had a passion for theater! Both your son and mine had a health condition, but, ultimately, their undoing was not the health condition itself, but rather a horror chain of medical errors, malpractice and negligence that border lined on the criminal. Damon and Santiago had so much in common that I imagine them being best friends in heaven already, playing videogames together, and talking about theater.