That Good Night

Life and Medicine in the 11th Hour

by Sunita Puri

As the American born daughter of immigrants, Dr. Sunita Puri knew from a young age that the gulf between her parents' experiences and her own was impossible to bridge, save for two elements: medicine and spirituality. Between days spent waiting for her mother, an anesthesiologist, to exit the OR, and evenings spent in conversation with her parents about their faith, Puri witnessed the tension between medicine's impulse to preserve life at all costs and a spiritual embrace of life's temporality. And it was that tension that eventually drew Puri, a passionate but unsatisfied medical student, to palliative medicine--a new specialty attempting to translate the border between medical intervention and quality-of-life care.

 

I have notes on Google Docs.  If you want them, email me: DJE 

 

The Invisible Worm

A women’s right to choose an alternative to radical surgery

by Rosalind Campion (1972) 

I found this book when I was looking through my bookshelf. I don’t recall when I bought it.  It must’ve been years ago. But, I sat down and read and found it a revelation. It’s beautifully written. It tells the story of the patient, her family and her medical and surgical journey. It would be a valuable book for all medical students and physicians to read.

This little volume, only 96 pages, is a gem. It’s the story of a woman in the early 1970s who discovers a lump in her breast and her surgeon in New York City recommends a radical mastectomy if it turns out to be cancer. By serendipity, she learns of an article by Dr. William Nolan is going to be published within a week or so recommending a simple lumpectomy for early breast cancer. When she discusses this with her New York surgeon it is clear that he didn’t want to hear any of this. 

She gets the feeling that there is not really much emotional difference between prisons and hospitals. The New York surgeon tells her “Now, you are being a very silly and stubborn woman. You ask too many questions.” “It took me a while to figure out that there really wasn’t anything else he could’ve said.  He had spent most of his working life performing these operations and, often, saving lives. How could he possibly admit that at times there might be a better and simpler way without denying his skill and his entire career?“ 

She makes an appointment to be seen at the Mayo Clinic. It turns out that. The Clinic is much more open-minded. They listen to her concerns and she has a simple lumpectomy and does not even need radiation, based on pathology. The Clinic doctor told her, “The trouble with most surgeons is that they won’t take the time to look into every possible method of treatment applicable to each patient’s case.“ He was talking about patient – centered care which in 1970 was not a term that had been used.

She writes, “My feeling, as he talked calmly and pleasantly at his paper-strewn desk, was that in addition to the obvious blessing of local excision, severe trauma, both physical and emotional, is spared the patient who has been thoroughly informed.” She continues, “It had occurred to me that the attitude of most surgeons in defending mutilation so wholeheartedly was like that of the Serengeti tribe in Africa who practice female circumcision. There is a mysterious element of punishment involved, and perhaps guilt as well.” 

That was a prevailing attitude of medicine and those days with regards to a woman’s choice for breast surgery. We’ve come a long way, but still there are areas where chauvinism plays a role in medicine today. She writes, “It is doubtful that cancer occurs psychologically, but resistance to it may somehow be tied up with the nature of the spirit.” [I’m not sure how one can unpack that statement, but there may be a kernel of truth there.] 

Towards the end, she writes “Are women really so timid that they think it immoral to question authority?”  She ends wit,“I’d like to be a living tribute to the belief that a surgeon and his patient owe each other mutual respect. Each avenue of cure for each individual must be considered.“  That’s a good a protocol for physicians wanting to provide patient-centered care. 

Hollow Bones

 by Jodi Picoult. (2026)

Hollow Bones was published just after the Lindsay Clancy trial's hung-jury.  The book's major teaching points have to do with postpartum psychosis, which today is still poorly understood and often mistreated by the medical profession.

This is a masterful book by a consummate storyteller. I could not put it down.

Hollow Bones is timely and relevant.  Anyone who has followed the Clancy trial would be captivated by it.  Prosecutors and judges would do well to read it. 

Wikipedia's page on PPP is thorough and helpful. 

 

 

The Survivors

A Story of War, Inheritance, and Healing  

By Adam P. Frankel

This memoir explores the impact of his family's Holocaust experiences on their lives and identities. Through personal narratives, Frankel delves into themes of trauma, memory, and the complexities of familial relationships shaped by historical events.  It touches on epigenetics and transgenerational trauma.

 

A short, recent documentary brought to my attention by Charles Katz gives some important background information: How Trauma Gets Passed to the Next Generation.  The concept of Transgenerational Trauma and Epigenetics is important.

Etna

 by Paul Yoon

While not strictly a pathography, the novella will appeal to animal companions, especially, lovers of dogs.  

From Amazon: 

"Set in a fictional country in the present day, this is a story told through the eyes of an ex-military dog, Etna. After surviving years of a devastating war, Etna decides one night to leave the men he has fought alongside for years and return home—to the place where he was taken from when he was young, in the thin but persistent hope that if a home exists for him, it might be there.

Thus begins an exhilarating odyssey told through the eyes of a dog as he traverses across ruined landscapes and fights to survive in a world that, even in peacetime, proves to be just as precarious. Along the way, he encounters other animals and humans who are attempting to figure out how to start again. What makes a life when there is no home to go back to? How do we begin to trust each other again after such profound loss?

This is a novel about the power of an idea, about never giving up, and ultimately a novel about finding hope in the most dire of times."

This is a poignant story told from the vantage point of a dog.  It reminded me of Watership Down.  

 

The Elusive Diagnosis

Doctors, and the Diagnosis Crisis 
by Alexandra Sifferlin (2026)

This is an interesting and important book for all health care professionals including students.  Good Reads says: "A compelling, necessary, and timely investigation into the diagnosis crisis in the American healthcare system, from the patients living with undiagnosed illnesses, to the doctors searching for answers, and what their quests reveal about our flawed medical system

My notes can be found on GoogleDocs. 

There are a number of similar books books on the market; but this is the latest and it's well-written and informative.

Poisoned: How a Crime-Busting Prosecutor Turned His Medical Mystery into a Crusade for Environmental Victims

 by Alan Bell (2017)

Amazon Synopsis:

After years of prosecuting hard-core criminals, rising legal star Alan Bell took a private sector job in South Florida's newest skyscraper. Suddenly, he suffered such bizarre medical symptoms, doctors suspected he'd been poisoned by the Mafia. Bell's rapidly declining health forced him to flee his glamorous Miami life to a sterile "bubble" in the remote Arizona desert.

As his career and marriage dissolved, Bell pursued medical treatments in a race against time, hoping to stay alive and raise his young daughter, his one desperate reason to keep going. He eventually discovered he wasn't poisoned by a criminal, but by his office building. His search for a cure led him to discover the horrifying truth: his tragedy was just the tip of the iceberg. Millions of people fall ill and die each year because of toxic chemical exposures - without knowing they're at risk.

Stunned by what he discovered, Bell chose to fight back, turning his plight into an opportunity. Despite his precarious health, he began collaborating with scientists dedicated to raising awareness about this issue. Soon, he also found himself drawn back into the legal field, teaming up with top lawyers fighting for those who had already fallen ill.

Both a riveting medical mystery and a cautionary tale, this book puts a human face on the hidden truths behind toxic dangers assaulting us in our everyday environments - and offers practical ways to protect ourselves and our children. 

We hear one side of the Multiple Chemical Sensitivity story here.  This is a captivating book, but I recognize there are doubters about MCS out there.  Reader, keep an open mind!

 

Magic Pill

The extra extraordinary benefits and the disturbing risks
of the new weight-loss drugs. 

by Johann Hari. (2024)

 

 

 

Johann Hari has the gift of making a complex subject clear 

and easy to read about.  This book is no exception.  GLP-1 

drugs highlight the brain-gut inter-relationship.  They have
taken the world by storm but in reality they are a fix to
changes in how and what human populations consume.  

Most of this has taken place over the past 50 years.

At the outset, Hari admits that he had an eating disorder, 

especially in relation to KFC. Rigorous scientific studies
have shown that there is a new generation of drugs, working
in a completely new way, that causes people who use them to
lose between five and 24% of their body weight. For people 

with severe obesity it is the Holy Grail. The maker of the most
popular of these drugs, Novo Nordisk, is the most valuable
company in  the European Union at present. 

 

This is a fascinating book. You can read my extensive notes
on Google Docs.

 

The Golden Age

The Golden Age (2014) is a novel by the Australian author Joan London.

Frank and Elsa meet at a rehabilitation clinic in suburban Perth in the early 1950s when they were ~ 12 years old. Both have been stricken with polio, and Frank is a Jewish refugee from Hungary. The novel follows the relationship between Frank and Elsa at the rehab center.

Polio is like love, Frank says, after many decades.  Years later, when you think you have recovered, it comes back."

 This is a quiet, beautiful book. It was a gift to read it. 

 

The Lost Art Of Dying

"The Lost Art of Dying" (2020) by L.S. Dugdale is an insightful exploration of life, mortality, and the human psyche’s relationship with death. Inspired by historical wisdom, Dugdale revives the medieval ars moriendi tradition, a concept that views dying as an art, complete with preparatory practices to facilitate a good death. This book is both a philosophical treatise and practical guide, compelling readers to question modern medicine's approach to prolonging life at all costs. Dugdale, a physician herself, uniquely balances the medical with the existential, urging a return to conversations about death in order to better enjoy and appreciate life.

Her writing is thoughtful and compassionate, providing a fresh perspective on a topic often shrouded in fear and avoidance. Rather than focusing solely on medical solutions, she emphasizes the importance of community, spiritual reflection, and acceptance. This book encourages a paradigm shift towards understanding dying as a natural part of the human experience, prompting readers to live more fully. "The Lost Art of Dying" is a poignant, inspiring read for anyone seeking deeper understanding of life’s final journey.

Second Life

Second Life: Having a child in the digital age
By Amanda Hess (2025)

This was an interview with the author on Fresh Air, May 7, 2025.  These are my notes from the podcast.

This book addresses how technology has changed having a baby. It takes to control our relationship to our own health, our children, etc.
Blame and guilt are baked into the medical system.
With regularity, patients encounter pseudoscience on the Internet. Every weirdness is out there.

Hess describes a website, Flow, that purports to help women through gestation. It has hundreds of millions of users and yet it provides mis- and disinformation.

What spurred her to write her book was that in the early third trimester of her first pregnancy her baby was diagnosed with Beckwith-Wiedemann  syndrome.

She discovered that disability can be divorced from the human side. Her experiences give insight into the patient’s mind. The Internet preys on vulnerable people. It creates a context for patient expectations.

Our culture highly stigmatizes disability. Questions are raised about the ethics and business of pre-implantation genetic diagnosis (PIGD).
See the book Mercies in Disguise by Gina Kolata
There are aspects of eugenics in all of this.

Today, for those who can afford it, their babies are always being monitored by machines, such as the the “robotic crib” — Snoo Bassinet (discount price ~ $1200 and up).  Surveillance is now confused with care. There is an intrusive element to all of this.  For sure there are some positive features, but the negatives may outweigh them.

Hess sees Internet parent groups as a positive feature of the web.

Technology is not being developed for the betterment of mankind; it is being developed to drive profits for individuals and companies.

This book explores how the digital age impacts on pregnancy and child rearing. It’s an introduction to thinking about how the Internet impacts all aspects of our lives and health.

Mercies in Disguise

Mercies in Disguise: A Story of Hope, a Family's Genetic Destiny, and the Science That Rescued Them
By Gina Kolata (2018)

If your family had a disease that caused significant illness or early death, would you want to find out if you carried the fatal gene?

This remarkable book follows the Baxley family of Hartsdale, South Carolina. It is a medical mystery, beautifully told by Gina. Kolata. The family harbors a mutant gene that causes a progressive neurological disease (GSS). There is science, there is genetics, there is medical ethics, there are questions of faith, and how individuals in their families can react to this life altering realities.

 In Mercies in Disguise, acclaimed New York Times science reporter tells the story of the Baxleys, an almost archetypal family in a small town in South Carolina. A proud and determined clan, many of them doctors, they are struck one by one with an inscrutable illness. They finally discover the cause of the disease after a remarkable sequence of events that many saw as providential. Meanwhile, science, progressing for a half a century along a parallel track, had handed the Baxleys a resolution―not a cure, but a blood test that would reveal who had the gene for the disease and who did not. And science would offer another dilemma―fertility specialists had created a way to spare the children through an expensive process.

A work of narrative nonfiction,     this is the story of a family that took matters into its own hands when the medical world abandoned them. It’s a story of a family that had to deal with unspeakable tragedy and yet did not allow it to tear them apart. And it is the story of a young woman―Amanda Baxley―who faced the future head on, determined to find a way to disrupt her family’s destiny.

The Lady’s Handbook for Her Mysterious Illness

 Sarah Ramey’s book, The Lady’s Handbook for Her Mysterious Illness (2020), was an eye-opener for me.  I asked Chat-GPT for a precise of WOMI.  Here it is, as I edited it.  

"WOMI: Woman with Mysterious Illness" while not a defined entity,  refers to the phenomenon where women experience undiagnosed or misdiagnosed medical conditions. This is an issue many women face, often due to biases in medical research and practice.

Synopsis: Many women suffer from health issues that are not easily diagnosed, sometimes leading to prolonged periods of uncertainty and inadequate care. These mysterious illnesses can include chronic fatigue syndrome, fibromyalgia, autoimmune disorders, and more, which are often under-researched or not fully understood. The experience of dealing with these conditions can be frustrating and emotionally taxing for both patients and healthcare providers.  A smaller number of these patients are Men with Mysterious Illness (MOMI).

Greater awareness and more dedicated research into women's specific health concerns can lead to better understanding and treatment options.
1. Education and Training: By educating healthcare providers about potential biases and the need for a more holistic approach, care can be improved.
2. Listening to Patients: Encouraging open communication and actively listening to women's experiences can help build trust and lead to more accurate diagnoses.
3. Advocacy: Supporting initiatives that advocate for women's health can lead to policy changes and increased funding for research.
4. Empathy and Support: Understanding the emotional impact on patients can foster empathy and provide the support they need during their health journey.


For Patients: Understanding WOMI can empower women to advocate for themselves, seek second opinions, and gain more control over their healthcare journey. -

For Providers: Understanding the concept of WOMI offers an opportunity to improve diagnostic accuracy, cultivate better patient relationships, and provide personalized care.

By fostering a more inclusive and attentive healthcare environment, both patients and providers can benefit from a more effective and compassionate approach to dealing with mysterious illnesses.

[I took notes on The Lady’s Handbook for Her Mysterious Illness and will share the pdf with anyone who is interested. DJE]

A Body Made of Glass

 A Body Made of Glass: A Cultural History of Hypochondria
by Caroline Crampton

As a physician, this book is of great import.  If you want to see my notes on the book, go to A Body Made of Glass and I can give you access.

From Harper Collins' website:

Part cultural history, part literary criticism, and part memoir, A Body Made of Glass is a definitive biography of hypochondria.

Caroline Crampton’s life was upended at the age of seventeen, when she was diagnosed with Hodgkin’s lymphoma, a relatively rare blood cancer. After years of invasive treatment, she was finally given the all clear. But being cured of the cancer didn’t mean she felt well. Instead, the fear lingered, and she found herself always on the alert, braced for signs that the illness had reemerged. 

Now, in A Body Made of Glass, Crampton has drawn from her own experiences with health anxiety to write a revelatory exploration of hypochondria—a condition that, though often suffered silently, is widespread and rising. She deftly weaves together history, memoir, and literary criticism to make sense of this invisible and underexplored sickness. From the earliest medical case of Hippocrates to the literary accounts of sufferers like Virginia Woolf and Marcel Proust to the modern perils of internet self-diagnosis, Crampton unspools this topic to reveal the far-reaching impact of health anxiety on our physical, mental, and emotional health.

At its heart, Crampton explains, hypochondria is a yearning for knowledge. It is a never-ending attempt to replace the edgeless terror of uncertainty with the comforting solidity of a definitive explanation. Through intimate personal stories and compelling cultural perspectives, A Body Made of Glass brings this uniquely ephemeral condition into much-needed focus for the first time.

Chronic Itch Is Miserable

Journalist Annie Lowrey suffers from primary biliary cholangitis (PBC), a degenerative liver disease in which the body mistakenly attacks cells lining the bile ducts. The result is a severe itch that doesn't respond to antihistamines or steroids.

 
This 45 minute November 12, 2024 NPR Fresh Air interview is a great introduction to the topic of Itch.

It is based on Ms. Lowrey's October 2024 The Atlantic Article, " Why People Itch, and How to Stop It."

What Does It Feel Like?

 by Sophie Kinsella

 BLOODY, BRILLIANT
            BRITISH!

This book is Ms. Kinsella's glioblastoma multiples (GBM) pathography told as a roman a clef.  It is a poowerfull story that is well-worth the time spent reading its 144 pages book or listening to the 2 hour audio version.  Kinsella's journey illustrates the classical illness trajectories* of GBM patients: physical, psychological, spiritual and social.

When she writes, "All my words disintegrated in my brain" one can appreciate that and feel for her.

Kinsella was diagnosed with GBM in December 2022.  A recent Instagram post from her contains this paragraph:

To everyone who is suffering from cancer in any form I send love and best wishes, as well as to those who support them. It can feel very lonely and scary to have a tough diagnosis, and the support and care of those around you means more than words can say.

All care providers, and some patients, will benefit from engaging with "What Does It Feel Like?"

* Scott A. Murray. Social, psychological and existential well-being in patients with glioma and their caregivers: a qualitative study,  CMAJ. 2012 Apr 17;184(7):E373–E382. PMC

Be Mine by Rishard Ford

from Good Reads: [with] "Be Mine" Richard Ford has crafted an ambitious, incisive, and singular view of American life as lived. Unconstrained, astute, provocative, often laugh-out-loud funny, Frank Bascombe is once more our guide to the great American midway.

Now in the twilight of life, a man who has occupied many colorful lives--sportswriter, father, husband, ex-husband, friend, real estate agent--Bascombe finds himself in the most sorrowing role of all: caregiver to his son, Paul, diagnosed with ALS. On a shared winter odyssey to Mount Rushmore, Frank, in typical Bascombe fashion, faces down the mortality that is assured each of us, and in doing so confronts what happiness might signify at the end of days.

In this memorable novel, Richard Ford puts on displays the prose, wit, and intelligence that make him one of our most acclaimed living writers. Be Mine is a profound, funny, poignant love letter to our beleaguered world."

  From a  medical point of view, this book is a picture of a family dealing with ALS.  Bascom finds himself as care giver to his son. Most of the book takes place at the Mayo Clinic and there are many memorable scenes in and around Rochester, MN..  Ford, I believe, was a patient there when he was being treated for prostate cancer.  I thoroughly enjoyed this book and learned a bit about care giving from it.

In My Time Of Dying

In My Time Of Dying: How I Cane Face-To-Face With The Idea Of An Afterlife

by Sebastian Junger (2024)

 

 This is the pathography of the author who had a near death experience (NDE) after the rupture of a pancreatic artery.  His medical problem was probably the result of a pancreaticoduodenal artery aneurysm (PDAA), which is often associated with celiac axis stenosis caused by median arcuate ligament syndrome (MALS).

 

Junger is a well-known writer, and the book is quite interesting. However, for me, The In-Between was more instructive about NDEs. Junger's book has many useful references and the Vlados book has none.

 

If you want to see my notes, I put them on GoogleDocs. Just email me and I'll send you a link. 

About This Blog

Pathographies are illness narratives and have become increasingly popular over the past few decades.  This blog contains references to illness narratives that I have found helpful.  The genre is interesting and important.   

There are three main types of pathography (and they may overlap):  Quest, Chaos and Restitution stories.  Pathographies are an essential adjunct to learning about the illness experience.

·      Quest: a person journeys through and faces suffering head on in the belief that something is to be gained from the illness experience.

·      Chaos: The rarest type and often the most important.  When people are overwhelmed by the intensity of their illness, to speak coherently becomes impossible. The underlying message is that life does not get better. All this provokes anxiety as the mask slips off to reveal human frailty and vulnerability. No Hollywood endings here.  

·      Restitution: In the West, we are mainly preoccupied with the restitution narrative, which goes: "Yesterday I was healthy, today I am sick but tomorrow I will be healthy again." There is a belief in restorable health.  Planet Hollywood rules.

Arthur Frank wrote a book about pathographies called "The Wounded Storyteller" (1995).  Notes on this can be found at Google-Docs. It's more than most people will want to read, but if you do, contact me if you need an invitation.

Illness Narrative Collections

Illness narratives, aka Pathographies, instruct health care professional about their patients’ experiences of being on the flip side of medical care: recipients, not providers.

Tamar Hudson, in a JAMA essay about her breast nodule opines, “On the other side of medicine, when the physician becomes the patient, the chasm between delivery and receipt of care becomes evident. Standards of care can stand in stark contrast to quality and even reality of care.” (1) Her experience led her to “redouble efforts not only to counsel more and listen more but to meet patients where they are. The vulnerability of placing one’s health in someone else’s hands requires a trust fall.”

There are three collections of doctors’ illness narratives that we know of:

1. Pinner M, Miller BF.  When Doctors are Patients. 1952

2.  Manedell H, Spiro H.  When Doctors Get Sick, 1987

3. Klitxzman R. When Doctors Become Patients, 2008

In my opinion, the most accessible is Mandel and Spiro’s “When Doctors Get Sick.”


Reference
1. Huson T. Being Patient. JAMA 2023;330(22):2163-2164