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.