Immortal Bird Postscript

Doron Weber on Immortal Bird Aftermath

Immortal Bird Readings & Talks: 10th Anniversary Update

Friday August 8, 2014 was Damon’s tenth birthday since he died on March 30, 2005 and also the date ten years ago when I started writing Immortal Bird. For me, the first decade went by in a flash. It has barely dented Damon’s image or my physical sense of him. But our family has splintered in the tragic aftermath, so Immortal Bird has become an unwitting testament not just to Damon but to all of us as we once were in that magical family.

I continue to get moving reader letters, a selection of which I will post in my next blog, and there is still a modest public interest in the book.
Below is a sample of readings, panels and talks related to Immortal Bird from the past three months.

On Thursday May 8, I was on a panel at LitTAP called True Minds–The Writer as Reason, Leader and Resource in Literary Arts Organizations. LitTAP is a part of the New York State Council of the Arts and seeks to “benefit the public and the art of writing by networking organizations, providing technical assistance, and helping literary arts presenters access the tools and resources they needed to succeed.” I was on the SESSION IV Panel: Writer/Editor + LIT Leader which took place at The Poet’s House in Battery Park. All the panelists were writers, poets or editors who also worked for cultural and arts organizations and we discussed this dual role. The panel was moderated by Michael Kelleher, Director, Windham-Campbell Prizes at Yale and included Ed Hirsch, Poet, President, John Simon Guggenheim Foundation; Brigid Hughes, Editor, A Public Space; Deji Olukotun, Freedom to Write Fellow, PEN American Center; and me.

On Friday May 16, I did a reading from Immortal Bird at the Daniel Pierce Library in Grahamsville, New York. Grahamsville is where we used to spend our summers and this fine, little town library was Damon’s favorite library in the world. He whiled away many a hot summer day in its cool alcoves and the wonderful librarian, Joann Gallagher, still remembers how Damon would come in with his Legionnaires’s hat and a determined reading list and send her and her staff scurrying to find each title. My reading was part of the Book Discussion Group’s Local Author Evening and took place in the handsome Reading Room on the Upper Level. The library has made major additions and modernized the premises since Damon’s day–there is now wifi–but the place retains its warm intimacy. The audience was unusually receptive and Damon’s connection with the library and the hamlet made the experience special. I sold a surprising number of books and fielded many excellent questions. Libraries in small towns play a bigger-than-normal role in the community and the Daniel Pierce Library in Grahamsville, NY, founded in 1902, is an exemplary town library.

On Thursday June 12, I was one of three authors featured in A LITTLE CONVERSATION: Medicine, Mystery and Martinis at the Writers Room, where I have been a member for over 25 years. I was honored to share the stage with two outstanding authors and fellow Writers Room members, Sheri Fink and Charles Graeber. All three of us had written books with medical themes. Sheri Fink, MD, is the author of the New York Times bestseller Five Days At Memorial: Life and Death in a Storm-Ravaged Hospital, winner of the 2013 National Book Critics Circle Award for nonfiction, and her reporting has won the 2010 Pulitzer Prize for Investigative Reporting. Charles Graeber is an award-winning journalist and the author of the 2014 Edgar Award-nominated The Good Nurse: A True Story of Medicine, Madness, and Murder. Victoria Rowan, the enterprising founder and Creatrix-in-Chief of Ideasmyth, moderated the panel, which can be viewed on YouTube. The evening was meant to offer the public a behind the scenes look at just three examples from the over 1000 books published by Writers Room members, which makes the Writers Room the most productive, as well as the oldest and largest urban writers colony in America. The audience was comprised of many distinguished people who could just as easily have been on stage.


Sundance, Immortal Birds & Better Angels

Last night I saw a remarkable film at the Sundance Film Festival that reminded me of Damon, as many things still do. The film, a visually arresting black and white narrative called The Better Angels, deals with the early hardscrabble childhood and formative family struggles of a young boy, age 7-10, who would go on to become Abraham Lincoln. The boy loses his mother to an early death from disease in the unforgiving Indiana wilderness, leaving him even more exposed to a harsh and uneducated if sternly principled father; but then he is saved when the father remarries a kind and sympathetic woman who becomes a loving second mother. Directed by A. J. Edwards, an editor and second unit director on several Terrence Malick films including, The New World and The Tree of Life–Malick is an executive producer of The Better Angels–the film features several extraordinary performances including first-time actor Braydon Denney as the young Lincoln. Denney, with his open, steady-eyed innocence and dreamy otherness, his obvious intelligence and sensitivity, and his quietly fierce determination reminded me of Damon.
I have worked with several people involved in the film, which also made it feel more personal: Brit Marling, who plays the birth mother Nancy Lincoln, won our Sloan Sundance feature film prize as co-writer for Another Earth and appears in this year’s Sloan winner, I, Origins: Diane Kruger, who plays the stepmother Sarah Lincoln, is developing a film about Hedy Lamarr with us: and executive producer Nicolas Gonda was involved with us on on another Terrence Malick project, Voyage of Time. Robert Redford, Sundance president and founder, slipped in quietly to the seat before me after the lights went out and watched the film in its entirety before slipping out after the Q & A.
One of the film’s signal achievements is to jettison all the traditional baggage of the historical biopic and plunge us directly into nature and the immediate lives of its protagonists, who have no names and could be us. It’s a bold approach that will make some uncomfortable but it rewards those willing to jump in and immerse themselves in this unique, and uniquely revealing, world.
Let the birds and the angels sing.

Immortal Bird Speaks for Patient Voice at Federal “Partnership for Patients” Meeting

Yesterday, I was the featured guest speaker, via webinar link, at a Washington DC meeting of the federal partners in the Partnership for Patients (PfP) initiative. My task was to tell representatives of about a dozen federal agencies–from the CDC, FDA, NIH and CMS to the DoD and VA–about my experience as related in Immortal Bird and to discuss my advocacy work since then on behalf of patients. I was also there to remind them why their work is so important and to bring a personal story into the bureaucratic mix.

The PfP is a public-private partnership dedicated to improving the quality, safety and affordability of health care for all Americans. It includes physicians, nurses, hospitals, employers, patients and their advocates, and the federal and State governments. The Partnership’s measureable objectives include reducing hospital acquired conditions by 40% and hospital readmissions by 20% (40/20).

Begun in 2010 and slated to end in 2013, this ambitious, 3-year program aims to:
• Make Care Safer so that there are 1.8 million fewer injuries and 60,000 lives saved
• Improve Care Transitions so that preventable complications during a transition from one care setting to another are decreased resulting in 20% fewer hospital readmissions and 1.6 million patients who recover without readmission

The three key components of the PfP are
a) 26 hospital engagement networks across the country which include 3700 participating hospitals
b) 82 sites in the Community-Based Care Transitions Program that include community-based organizations such as social service providers or Area Agencies on Aging, multiple hospital partners, nursing homes, home health agencies, pharmacies, primary care practices, and other types of health and social service providers serving patients in that community
c)The Patient and Family Engagement Network to share information and catalyze action among existing patient and family engagement leaders, especially at the community level.

Patient and Family Engagement is where I and my experience as the author of Immortal Bird comes in.
The PfP people heard my talk at Chautauqua this summer about the importance of “the patient voice” in the health care debate and invited me to join their efforts, which appear closely aligned with my own. The PfP mission statement reads:

“Patients, families and caregivers are essential partners in efforts to improve the quality and safety of the care they receive, including being active members of their own health care team; advocating for improved safety where they receive care; and helping to set the health care priorities in their communities. Patients and families have an important role to play in ensuring the patient perspective is part of every Partnership for Patients activity and must be supported in taking action with patient and family engagement best practices and tools.”

The meeting yesterday was intended to give the federal partners an open and collaborative forum for discussing and reporting their activities, especially how they are progressing towards the 40/20 targets and how PFP team can support them related to the PFP aims. The federal agencies represented at this meeting included

a)Center for Medicaid and Medicare Services (CMS), which has the operational lead
b)Agency for Healthcare and Research Quality (AHRQ)
c)Administration for Community Living (ACL)
d)Centers for Disease Control and Prevention (CDC)
e)Health Resources and Services Administration (HRSA)
f)Office of the National Coordinator for Health IT (ONC)
g)Indian Health Service (IHS)
h)Food and Drug Administration (FDA)
I)National Institutes of Health (NIH)
j)Occupational Safety and Health Administration (OSHA)
k)Substance Abuse and Mental Health Administration (SAMHA)
l)US Office of Personnel Management (OPM)
m)US Department of Defense (DOD)
n)US Department of Veterans Affairs (VA)

My role was to tell them about Damon’s story and how the health care system failed him, as a reminder of how urgent their work is. It easy to lose sight of the critical nature of such efforts–to save human lives that are lost due to preventable errors and remediable practices–just as it is easy to lose sight of the patient voice, and the centrality of the patient, in the health care debate. I discussed the diagnostic error–treating infection as rejection despite all signs and symptoms to the contrary–that led to my son’s death. And I listed some of problems our family encountered including lack of continuity of care, too little direct observation of the patient and the difficulty of getting good information, especially comparative outcome data. I also talked about my lobbying on behalf of the Adult Congenital Heart Association and Mended Little Hearts for more federal funding for research and data collection for Congenital Heart Disease and about the continuing impact of Immortal Bird on the medical profession, from its endorsement in Congenital Cardiology Today as must-reading for all pediatric cardiologists and cardiac surgeons to its adoption and use by universities and university medical centers.

It was a productive session and a positive experience and it also gave some of the federal partners a chance to speak in their own personal voice and to share similar family experiences. Our current error-riddled medical system is an equal opportunity destroyer and does not discriminate based on one’s place in the hierarchy or on one’s race, ethnicity or gender or whether one favors red or blue or works at the city, state or federal level.
A shout-out from me to these dedicated federal workers and this worthy nationwide undertaking to improve care and save lives.

The Biggest Mistake Doctors Make

Laura Landro has an excellent article in today’s Wall Street Journal about diagnostic medical errors and some innovative methods to address them: The Biggest Mistake Doctors Make . Landro, who described her own battles with the medical system in Survivor: Taking Control of Your Fight Against Cancer shares many of my concerns with our health care system and recently retweeted my column about my Immortal Bird talk at NYU, A Tale of Two Hospitals. Her article gives a very useful overview of diagnostic medical errors, both the dimensions of the problem in terms of lives lost and financial cost, and in terms of some creative efforts now underway to try and stem this epidemic. My own view is that automation, computer algorithms and new diagnostic devices and tests are all good and should be applauded but it’s changing the culture of medicine–and specifically the kinds of people who go into medicine and their motives for doing so–which holds the key to improving care and reducing errors.

Immortal Bird at NYU Medical Center or/ A Tale of Two Hospitals

–I have not posted for over a month but I continue to give talks about Immortal Bird and the issues it raises, particularly regarding medical errors and ways to improve medical care. And the medical establishment, to my surprise, continues to discuss Immortal Bird and the lessons it holds for patient care and communication. But this week, for the first time since Damon died in 2005, I felt our story was being heard by the medical profession in a new way, and I even received an apology for all the things that went wrong with Damon’s care.
–The apology, albeit eight years late, was sincere and heart felt. The hospital, its head and its leading physicians said they were deeply sorry for all the mistakes and mistreatment recounted in Immortal Bird and no one should have to go through what Damon and our family went through. It was a deeply moving experience, balm for a still-festering wound.
–Alas, the apology did not come from New York Presbyterian/Columbia University Medical Center–the hospital where Damon died!
Columbia University Hospital, charged by our family in a still-pending lawsuit with carelessness, negligence and malpractice in Damon’s death, persists in claiming to have “lost” all Damon’s relevant medical records and to deny accountability for his death. Instead, the apology about how the health care system failed Damon came from New York University Langone Medical Center, a facility not involved with his care, and therein lies a tale of two hospitals and two different philosophies of care and how to confront, and learn, from one’s mistakes.
NYU Langone has a dynamic Dean and CEO, Robert Grossman, a neuroradiologist by training, who has made quality care his number one priority. Grossman has instituted many innovative, data-driven methods for monitoring performance and outcomes by individual physicians in every department and he also holds weekly lectures and discussion series for his top medical faculty and staff to share what is right, and what is wrong, with current practice. Grossman believes in relentless self-assessment and self-improvement, and his aggressive efforts were recently rewarded when NYU Langone was ranked number one for overall patient safety and quality among leading academic medical centers across the nation.
–Grossman received a copy of Immortal Bird from a colleague and became so enmeshed in the story, he read it in two days. He then purchased 40 copies and made it assigned reading for the Wednesday lunchtime discussion series. He invited me to address his team and asked the bioethicist Arthur Caplan to moderate the discussion. The talk was not open to the public or the press.
–This Wednesday November 7, I was the guest speaker at a private luncheon of about 50-60 department chairs, head physicians and medical administrators at NYU Langone Medical Center. I spoke about Damon and about our experience in negotiating the health care system as we tried to save his life, and I included both the highs and the lows of our encounters with the medical system. I pinpointed continuity of care, direct observation of the patient and the difficulty of getting good comparative outcome data. The goal of this meeting was to learn from the mistakes made in our case in order to prevent them from recurring and to discuss ways of improving patient care in light of our experience.
–While I expected a certain defensiveness and professional “guild” solidarity as I faced 50 top doctors and told them what had gone wrong with my son’s care, I was surprised by how emotionally open and available this group appeared to be to Damon’s story. They had read Immortal Bird and listened to me as parents and family members first, physicians second. One senior doctor quoted passages I’d written back to me as only a fellow father could. Most of the people in the room seemed to understand and identify with my frustrations, pain, anger, and tragic sense of loss.
–I was equally impressed by the assembled medical professionals’ desire to learn from our tragedy and use it as a guidepost to institute a better and more responsive system of care. One physician asked me whether, given all my experience with such a wide range of doctors–from very good to very bad–I could suggest the best criteria for selecting medical students. What qualities should the admissions office be looking for in the doctors of tomorrow? It was an excellent question and cut to the heart of the issue, and it was asked in a spirit of genuine inquiry and desire for the right answer. I am not a medical expert and I had never thought about the question in this way, but my instinctive reply was that assuming a baseline of academic competence–courses, grades, MCATs etc.–the human element was paramount. They should be looking for top human beings, young men and women who were going into medicine because they cared about others and wanted to help them get the best treatment possible and who scored highest on the capacity for empathy, compassion and selflessness.
–We discussed other important issues such as who else in the treatment team beyond the physician could improve the patient experience and how to deal with the long-term fall-out, including grief and mental health challenges. There were experts in the room in each of these areas, and it was clear everyone understood there were deficiencies that needed to be addressed and improvements that needed to be made.
–“Quality defines individuals, and institutions,” Dr. Grossman wrote me after, “and without it there is no trust, no relationship and no responsibility–the core of medical CARING.” Let us hope that the NYU Langone Dean and CEO wins the day and that his humane, rigorous, patient-centered approach to running a hospital and ensuring the highest quality of care and safety for all becomes the standard of care in every medical center in America so that tragedies like Damon’s can be prevented in the future.

Weber celebrates son’s life in family memoir

Weber celebrates son’s life in family memoir.

Immortal Bird Alights in Chautauqua

I flew up from New York to Chautauqua today–you actually fly to Buffalo and drive another 90 minutes–for Week Nine geared toward “Health Care: Reform and Innovation.” This is a first-ever for the Chautauqua Institution, the beginning of a three-year initiative focusing on health care that includes an expanded program this week with 15 additional lectures at smaller venues intended to encourage more dialogue and Q-and-A.
As this week’s official selection of the Chautauqua Scientific and Literary Circle (CSLC)–“the nation’s oldest, continuous book club, founded in 1878”–I will have one of the traditional author presentation slots in the Hall of Philosophy on Tuesday August 20 at 3:30 pm where I will read from Immortal Bird. They’re giving me a little more time than I usually have, so I need to choose a few more passages to read, which I will probably do Tuesday morning.
On Wednesday August 21, I will be a presenter at the Young Readers Program in Alumni Hall at 4:15 pm which is aimed at young people in middle school or younger. The theme is how families cope with the terminal illness of a child. I will discuss Damon’s story in Immortal Bird and link it to two assigned books, The Fault in Our Stars by John Green and Out of My Mind by Sharon Draper. I am looking forward to the Q-and-A and hearing stories from the audience, always the most interesting part for me although I also find it rewarding to share Damon’s story with new audiences.

Immortal Birthday

Today is Damon’s birthday. He would have been 25 years old.

Immortal Bird: Reader Letter from A Father Who Lost His Son

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.

Dear Doron:

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.

Damon and Immortal Bird Anniversary Update

–Last week on March 30th was the eighth anniverary of Damon’s death. As readers of Immortal Bird know, he is buried at Woodlawn Cemetery in the Bronx, in the Day family plot. Damon was related on his mother’s side to Clarence Day of Life With Father fame and he is buried alongside Katherine “Peggy” Day, Clarence’s wife, who he knew well because she lived into her nineties and we spent summers with her in Truro as well as some Thanksgivings in New York.
–Those who have experienced similar loss know that even eight years is a trifle.
–On April 1, I did a reading from Immortal Bird at Claremont-McKenna College and introduced Damon and his story to more people, largely students and professors. For me, each reading is like a sacrament in which I spread his sparkling spirit like glittery ashes or pixie dust that is scattered a little further across the earth.
–On April 5, Damon’s brother Sam, nearly five years Damon’s junior, celebrated his 20th birthday. Damon was 16 and 3/4 when he died.
–The paperback of Immortal Bird came out two months ago and the book continues to have a life of its own.
–As previously noted, in February it was the lead story in a medical publication, Congenital Cardiology Today, where it was used as a study guide and basis for discussion groups by 36 doctors, nurses, fellows and surgeons in one hospital and where the medical director recommended that all pediatric cardiologists and cardiac surgeons in the country read the book because it could lead to improvements in patient care and communication.
–And in March, The New York Times Sunday Book Review selected the book for its Paperback Row column and wrote a cogent one-sentence summary: “With urgency and tenderness, Weber chronicles the efforts to save his eldest child, who was born with a congential heart defect, and their struggles against the received wisdom and arrogance of the American medical establishment.”
–Speaking of arogance, our lawsuit against New York Presbyterian/Columbia University Medical Center for Damon’s wrongful death remains unsettled.
–But readers continue to respond and send me beautiful letters and comments. Today I received this lovely tribute:
“Ohhh, my heart is raw and my spirit both crushed and uplifted upon having met Damon. Thank you for two wonderful gifts: having produced and nurtured him and letting the rest of us get a glimpse of him.
Please know that you brought him to life for those who don’t know him. I feel enriched for it.”
–Thank you to those who have kept Damon’s spirit alive by opening their hearts to his story.

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Doron Weber on Immortal Bird Aftermath

Doron Weber on Immortal Bird Aftermath

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