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 

Rearranged

An Opera Singer’s Facial Cancer and Life Transposed
By Kathleen Watt, Heliotrope Books, New York 2023

Full many a gem of purest ray serene
The dark unfathomed caves of ocean bear;
Full many a flower is born to blush unseen
And waste its sweetness on the desert air.
                                 T. Gray, Elegy Written in a Country Churchyard


Would this not be the fate of Kathleen Watt’s riveting and important pathography.  The topic is her decade-long odyssey of treatment for, and recovery from, osteogenic sarcoma of the jaw.  

As a physician, I have found that textbooks are of limited value.  They are essential, but take one just so far.  They tell us about the disease, but not about the person with the disease.  It is a truism that it is often more important to treat the person with the disease than it is to treat the disease the person has.  Our job as physicians is to work with the patient to craft a treatment for the problem that suits the individual with that problem.

Kathleen Watt was an aspiring opera singer when she was diagnosed a malignant tumor of the maxilla.  Originally thought to be a chondrosarcoma, eventually it was reclassified as an even more dangerous osteogenic sarcoma (OS), a tumor with an incidence of < 1 per million in adults.

Watt is a gifted story-teller who tells her narrative with humor and insight.  There are many lessons for physicians, patients and caregivers in Rearranged.  Her medical/surgical team was gifted, but human, too.  Their sometimes messy personal and professional lives impacted patient care.  She suffered surgical complications and major upheavals in her private life.  Watt is candid about her own life and that of her long-term partner, Evie.  Rearranged is much more than a story about a tumor.  We learn about Watt’s 
personal relationships and how they were impacted by years of disease and some hapless life choices.  We learn how important it is for patients to have functioning support systems.

Physicians’ Continuing Medical Education (CME) is heavily weighted towards the technical, towards what can be measured.  Perhaps, that’s because the editors of prestigious journals and medical teachers suffer from their own brand of tunnel vision.  We need open-ended narratives such as Rearranged to supplement our narrow professional educations.

For instance, in dealing with her cadre of physicians, we need instructors such as Kathleen Watt to redid us that:
 
New doctors are specifically and exhaustively trained to repress natural impulses, like sympathy with the humans in their care. Such impulses are referred to as “humane bias,” and a young doctor's objective is to master it, effectively severing emotion from executive function. Human bias only makes a muddle of the physician’s clear eyed observations.

Over the past three decades, I have studied illness-narratives (pathographies) and collected  many of them on a website. There are common themes that run through pathographies and they fall into one, or a combination of, three narratives: Quest, Chaos or Restitution. ? Ref  Watt’s narrative encompasses all three.  I felt privileged to have taken a master class in patient care from Kathleen Watt.

Rather than blather on, you can visit a document containing some excerpts I took from Rearranged. If you want to open this link and can’t, email me and I’ll send the link.  djelpern@gmail.com

Having finished Ms. Watt’s brilliant, convoluted journey, I feel like the wedding guest in Coleridge’s “Ancient Mariner.”

He holds him with his glittering eye—
The Wedding-Guest stood still,
And listens like a three years' child:
The Mariner hath his will.

Addendum
There are similar books dealing with facial surgery and disfigurement.
Autobiography of a Face by Lucy Grealy (1994)
2. The Facemaker: A Visionary Surgeon’s Battle to Mend the Disfigured Soldiers of World War I by: Lindsey Fitzharris (2022)
3. Truth & Beauty: A Friendship  by Ann Patchett (2004)