Notes on Pathographies

Notes on Pathographies: An Arabian Nights’ Experience
David J. Elpern*

* The Skin Clinic, Williamstown, Massachusetts Email

         A few years ago, a group of us gathered in the Osler Library at McGill. Osler guided us with his words: The practice of medicine is an art, not a trade: a calling not a business; a calling in which your heart will be exercised equally with your head. Often the best part of your work will have nothing to do with powders or potions, but with the exercise of an influence of the strong upon the weak, of the righteous upon the wicked, the wise upon the foolish… Courage and cheerfulness will not only carry you over the rough places of life, but will enable you to bring comfort and help to the weak-hearted, and will console you in the sad hours when, like Uncle Toby, you have ‘to whistle that you may not weep’

We are gathered to honour Osler, not to imitate him. The haiku poet, Matsuo Basho, wrote:

Don’t imitate me;
it’s as boring
as the two halves of a melon.

Osler was a great lover of books. An inveterate collector and bibliophile, he was curator of the Bodleian Library at Oxford. “In Oxford he taught only once a week, did a small amount of practice, and spent most of his time on his books. His library became one of the best of its kind, and after his death it passed intact to McGill, where it is specially housed.” We were privileged to sit among his books and near his ashes. He would have appreciated these words by the 14th century Buddhist monk, Yoshida Kenko:

To sit alone in the lamplight
with a book spread out before you
and hold intimate converse with men of unseen generations –
such is pleasure beyond compare.

“Divide your attention equally between books and men. The strength of the student of books is to sit still – two or three hours at a stretch – eating the heart out of a subject with pencil and notebook in hand…”

he goes on, “Of the three well-stocked rooms which it should be the ambition of every young doctor to have in his house, the library, the laboratory and the nursery – books, balances and bairns – I would urge him to start at any rate with the books and balances…

Every day do some reading apart from your profession… you will be a better man and not a worse practitioner for an avocation. I care not what it may be: gardening or farming literature or history or bibliography, any one of which bring you in contact with books.”

Herein, I am going to discuss one of my avocations: the study of Pathographies.

In 1899, at a gathering of medical students in Albany, NY, Osler said: “There is a strong feeling abroad among people – you see it in the newspapers – that we doctors are given over nowadays to science; that we care much more for the disease and its scientific aspects than for the individual. I don’t believe it, but at any rate, whether the tendency exists or not, I would urge upon you in your own practice, to care more particularly… for the individual patient than for the special features of the disease… Dealing as we do with poor suffering humanity, we see the man unmasked, exposed to all the frailties and weaknesses, and you have to keep your heart soft and tender lest you have too great a contempt for your fellow creatures. The best way is to keep a looking-glass in your own heart, and the more carefully you scan your own frailties the more tender you are for those of your fellow creatures.”

         Reading pathographies, allows us to do just this.

I remember when this idiosyncratic side-interest of mine developed. Around 1994, I came across a review of Arthur Frank’s important book: “At the Will of the Body.” Since then, I have read scores pathographies and they have taught me a tremendous amount that I was not exposed to in medical school or my so-called “postgraduate” education.   I’ve prepared an eclectic list of pathographies that has resonated with me and will briefly discuss a subset of these. My list is housed in The Pathography Blog (www.pathography.blogspot.com )

Osler would probably not have approved of this topic. In “Nurse and Patient” he wrote: “Things medical and gruesome have a singular attraction for many people,… To talk of diseases is an Arabian Nights’ entertainmen.

Osler felt it was “one abominable practice in recent days… I refer to the habit of openly discussing ailments which should never be mentioned. This open talk about personal maladies is an atrocious breach of good manners. I have heard a young woman at the dinner table relate experiences which her mother would have blushed to have told to the family physician. Everything nowadays is proclaimed from the house-tops, among them our little bodily woes and worries. We doctors are great sinners in this manner, and among ourselves and with the laity are much too fond of ‘talking shop.’ “

From this, I infer that Osler might not have been enamoured of pathographies. However, “the times they are a changing.” Willie would have agreed that, in the words Emerson, one of his mentors, “A foolish consistency is the hobgoblin of little minds, adored by little statesmen and philosophers and divines.”

 

         I will briefly discuss five pathographies that illustrate some points we have covered this far. They were selected almost at random from my collection and do not denote any special bias.

         At the Will of the Body. Arthur Frank

With this book, I was formally introduced to this genre. About, AWB, Frank writes: “In 1989 I was trying to put life back together after my wife and I had gone through three years of what I now call deep illness, that is, illness that you believe will change forever who you are and how you understand the world you live in. I had a virally induced heart attack in 1985, then was diagnosed with testicular cancer in 1986, and my mother-in-law, Laura Foote, died of cancer in 1988. My response was to put these events into a story, which became my first book, At the Will of the Body. The story became a kind of container for the events; it held them in memory, but also gave my life some distance from illness.”

AWB is short; it reads like a meditation, devoid of excessive verbiage or cant. Frank, a medical sociologist went on to write a scholarly book called, “The Wounded Story-Teller” which is dry, academic and rough going for the dilettante (such as I am). In the latter, he defines three types of pathographies.

  • 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 stories: 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.

Anne Hawkins, a medicine and literature scholar wrote a brilliant article: Pathography: Patient Narratives of Illness (which can be read in full on line). She breaks pathographies into four groups.

  • Didactic
  • Angry
  • Alternative Medicine
  • Ecopathography

Both of these schemas are useful. Some of these books can be grouped under more than one heading.

At the Will of the Body – for me, the Urpathography, was an introduction to the country of the sick. Frank feels that “illness is an opportunity, though a dangerous one… Critical illness offers the experience of being taken to the threshold of life, from which you can see where your life could end. From that vantage point you are both forced and allowed to think in new ways about the value of your life… Illness takes away parts of your life, but in doing so it gives you the opportunity to choose the life you will lead, as opposed to living the one you have simply accumulated over the years.”

Four Random Snippets from Pathographies:

Profound: Death Be Not Proud: 1948

In Death Be Not Proud, John Gunther explores the process of his teenage son’s death: discovery, fighting, living on, and then dying. The process becomes just a little bit easier, as humor, human kindness and courage all are woven in. More than just about dying, this memoir becomes a study of living. Johnny was 17, he would have attended Harvard. But, none of that mattered, as everyone who knew him remembered his life. This book asks the big questions: “What does it mean? What can it mean, now?” It draws upon the universality of death.” Today, it is little read, but still has great power and immediacy.

Funny and Tragic: It’s Always Something, Gilda Radner:

Hers is an ultimate chaos story: Comedienne Gilda Radner’s losing struggle with ovarian cancer. She describes her marriage to Gene Wilder, her struggle against ovarian cancer, and her involvement with the Wellness Community, a cancer-patient support group. One comes to appreciate however famous one is, one can still suffer at the hands of the medical community. Ivan Illich said, “The greatest threat to the health of the commonweal is the medical profession.” Some of Radner’s care epitomizes this. She summarized this well in a poem that was published in the New England Journal of Medicine shortly before her death:

Doctors are whippersnappers in ironed white coats
Who spy up your rectums and look down your throats
And press you and poke you with sterilized tools
And stab at solutions that pacify fools.
I used to revere them and do what they said
Till I learned what they learned on was already dead.

Closing the Chart, by Steven Hsi, has a sad ending, but is a Didactic story and has an element of restitution.   At age 40, when most physicians are just hitting their professional stride, Dr. Steven Hsi, a young family practitioner in Albuquerque, New Mexico was diagnosed with Takayasu’s arteritis–a rare, poorly understood multisystem disease that mainly targets the aorta. At that moment, he entered a parallel universe as a patient with a major serious illness. Over the next four years, he chronicled his life as the disease and the effects of three cardiac surgeries and numerous drugs played themselves out. After his death in 1997 at age 44, his wife discovered her husband’s extensive illness narrative journals. She and a journalist friend of Hsi’s fashioned these writings into a remarkable book as a tribute to Dr. Hsi — a true labor of love.

Hsi writes: “There is a place in our busy lives for spending a little time with a dying patient. When I have taken such time, I have seen painful things and good things. My patients have expressed their anger and their hopes to me. And I hoped with them, for a cure, and for an end to their pain, and for peace.

I laughed with them, too. They faced death as I had faced it. We had nothing to lose by laughing. Quirky, eccentric funny — my patients were a joy to be with and I cherish the time I spent with them.”

In this book there are lessons on every page for all of us, lessons to make us better care givers, more discerning patients, and better advocates for family members and friends who are sick.

The Camera My Mother Gave Me: Susanna Kaysen

This is a very literate, funny, chaotic story by a young author with vulvodynia, a poorly understood pain syndrome. Being famous in Boston as Kayse was, she was shuttled around from pillar to post between gynecologists, pain specialists, behavioral psychologists and a potpourri of “therapists” and alternative healers, none of who seemed to understand nature of her problem. Her frenzied adventures underscore how tenuous the lot of the orphan patient is. The far-thinking dermatologists Walter and Dorinda Shelley define the orphan patient as: “… one with a unique, inchoate, baffling and often disabling disease not yet clearly discernable in the medical literature. She is an outlier, standing alone.” Kaysen’s pathography is the sad song of such an orphan patient. For more on this concept, refer to “Studies of Orphan and Unique Patients” by Walter and Dorinda Shelley.

*********************

This essay is meant to whet your appetite for this literary genre. Pathographies have enhanced my appreciation of medicine and helped to make me a better, more attentive caregiver. They impart the opportunity to spend hours in the company of talented, articulate story tellers and learn about illness from primary sources: breast cancer in the “graphic pathography” by Marisa Marchetto, bone marrow transplantation from dermatologist David Biro, locked-in syndrome from Jean-Dominic Bauby, living with facial deformity from Lucy Grealy and so many more.

The Pathography Blog is my attempt to compile a list of those that were meaningful to me. If you have favorite pathographies that are not on my list, please share them with me. The Pathography Blog is a repository of these stories that may serve to help students, caregivers and seekers.

There is much more to write about this genre; but I prefer to heed Yoshida Kenko who wrote: “Even when building the imperial palace, they always leave one place unfinished.”

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