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)