Damon Weber would have turned 25 on Aug. 8. The vivacious, red-haired boy wanted to be an actor and, unlike most of his friends, he was not afraid to talk to girls. Damon was also born with a malformed heart and had two open-heart surgeries by the time he was 4. At age 13, Damon was diagnosed with a rare, life-threatening disease called protein-losing enteropathy.
Damon died three years later, on March 30, 2005. He was 16-and-a-half years old.
Doron Weber, Damon’s father and former director of the Alfred P. Sloan Foundation, did not write about his son’s death until August of that year. Although the stretch of time was only five months, to him it felt like a lifetime.
“Damon was such a gorgeous spirit, and so infectious,” Weber said. “The book … it’s his. He gave it; I was the transcriber. It really did feel that way. He was just kind of perched on my shoulder, guiding me as I wrote.”
Above all, Weber wanted to preserve his son, to give life where it had been unfairly revoked. The fruit of Weber’s labor, Immortal Bird: A Family Memoir, is a celebration and a tribute to Damon. In Weber’s mind, it is the only way Damon lives on in the world, other than in the hearts and minds of those who loved him.
At 3:30 p.m. today in the Hall of Philosophy, Weber will present Immortal Bird, the Chautauqua Literary and Scientific Circle selection for Week Nine. While Weber will touch on the complications in the medical system that may have contributed to his son’s death, he will mostly focus on the kind of person Damon was in life.
“I regularly get beautiful letters from people living in Iowa or Brazil who write me about Damon as if they met him, and they talk about him as a person,” Weber said. “And that was the primary aim of my book … so that people who never would get the chance to meet him in life would at least get to know the kind of person he was.”
Although it has been eight years since Damon’s death, Weber’s experience remains true to what he wrote in his book: No one you love dies once, but they never stop being alive, either. The book was published a year and a half ago, and the process of writing and promoting it has in many ways forced Weber to relive the tragedy.
“It has not diminished,” Weber said. “It’s just more things intervene and happen, and people grow up and move on. My son Sam is now older than Damon ever got to be, so our friendship is in places that Damon and I couldn’t go, just because he never got to college age … But life goes on.”
The title of the book comes from the John Keats poem “Ode to a Nightingale.” Weber was also inspired by a passage from another famous ode by Keats, “Ode on a Grecian Urn,” which declares “beauty is truth, truth beauty.”
“For me, those were the two guideposts for writing the book,” Weber said, “which were really to tell the truth, to really keep my eye unsparingly on exactly what had happened, and be clear-eyed but also to find some beauty in the story.”
Weber drew a biographical comparison between Damon and Keats — both seemed to fit a great deal into a short time, as if their existences were concentrated, as if they were different than others.
“[Damon] was never hurried,” Weber said. “He didn’t rush, he had his own pace … In that sense, like Keats … Keats died when he was 26. And Damon was the same way — I mean, just seemed to compress a lot into a short span.”
Although the book focuses on Damon’s life and the years leading to his death, Weber’s choice to label Immortal Bird as a family memoir was very intentional.
“At the end of the day, it is a family story,” he said. “It’s a story of what happens to one family, and I’m convinced — certainly in terms of the medical system — that our story’s not unique in any way. I think that Damon was unique, but what happened to him and what happened to us, in terms of that part of the whole story, I think happens to people in America all the time.”
Weber said the core of the issue with the medical system, if one were to boil it down, is that the patient has been forgotten. Instead, as private equity funds have taken over hospitals, streamlining business and increasing revenue have become primary concerns.
One specific dilemma, one especially key in Damon’s case, is continuity of care. Patients can often be lost in the shuffle of nurses and doctors changing shifts. Consequently, critical information is not communicated, and no single person is held responsible for mistakes.
Medical communities have responded to Weber’s book. For example, an article published on the front page of Cardiology Today praised the book and suggested it as material for discussion.
“I have a lawsuit against the hospital,” Weber said, “but there were a lot of amazing doctors who took care of Damon. And the medical profession as a whole, I think, is remarkable in that they’re willing to learn from their mistakes and try to improve their own practice. I don’t know too many professions that take it upon themselves voluntarily to learn how they can do better and improve their practice.”