What do All’s Well by Mona Awad, Hot Milk by Deborah Levy, Em and the Big Hoom by Jerry Pinto, A Ballad of Remittent Fever by Ashoke Mukhopadhyay (trans. Arunava Sinha) and Small Rain by Garth Greenwell have in common?

I don’t know. That’s what I am trying to find out.

These are the books I chose for my PhD in the semiotics of illness, after a whirlwind of failed ideas, with a steadily growing indifference towards life and literature. It’s strange that I categorize life and literature separately. Since, my life is literature. Avoiding literature would mean avoiding life. Speaking of avoidance, I recently started a new section in my to do list notebook for the tasks that I avoid. My goal is to be kind and non judgemental towards my various failures and procrastinations. The goal is not to be productive, but to be kind enough to get by.

So, I thought I’ll write one of my growing lists of tasks on this blog – that is choosing my last primary source.

Reading Patients, Writing Care

“The constant glare of anticipatory grief leaves the labor of care bleached of self-forgiveness.”

 dementia campaigner and novelist Nicci Gerrard

• my eyes quirk up in joy. I immediately copy/paste her name onto the browser, hoping one of her books would fit the spot as my sixth primary source. It doesn’t matter that I have not read the whole article yet, or that I have not completely read the other selected books that I was supposed to read. I live in a bubble of indifference that only short bursts of fear and shame could break. This is no way to research. This is no real way of living one’s life. But I am getting by.

I wish for the sweet release of unearned results and mediocre solutions. It will eventually come. But Nicci Gerrard is not it.

Rachel Clarke’s Dear Life: A Doctor’s Story of Love and Loss

• This sounds ‘relevant’. But not a fiction.
• “That it does feature in Dear Life feels all the more significant to me, not simply because Clarke’s description facilitates a personal connection, poignantly reminding me of the strenuous demands of a somewhat taken-for-granted procedure, but also because it exemplifies Clarke’s effort to advance a form of writing that complements one key ambition of the “critical medical humanities” in recent years: to broaden “the sites and scales of ‘the medical’ beyond the primal scene of the clinical encounter.”² In so doing, Dear Life foregrounds the explicitly affective aspects of attending to patients as an avenue to political activism—pointing to the broader reality that it may be easier to look away from palliative care than to face it.”

• Should I change my theory from semiotics to affect. My guide said affect is outdated. But does that really matter?
• I imagine them asking me how my research is socially relevant. I want to weep. I should have been stubborn about doing my research on Ali Smith.
• Repressed and unaddressed regrets are one of the main reasons for demand avoidance (and no I am not going to cite that statement).
• [definition] ‘palliative care’ – Palliative care improves the quality of life of patients and that of their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social or spiritual. The quality of life of caregivers improves as well.

• “Released just before the COVID-19 outbreak started to escalate, the book retrieves the particularity of hospice communities from the homogenizing statistics under which they are too often subsumed—cordoned off as the high-mortality “segment” of the general population in the epidemic’s tragic graphs. | And this affecting particularism is one of Clarke’s standout strengths as a writer: it’s crucial to her mission to document the quiddity of illness beyond the threshold of medical rescue, where the familial devastation occasioned by imminent loss is unique for each patient and for each relative.”

• [definition] ‘quiddity’ – the distinct, peculiar feature of someone or something

1. Rachel Clarke, Dear Life: A Doctor’s Story of Love and Loss
2. Nicci Gerard, What Dementia Tells Us about Love
3. Christie Watson’s The Language of Kindness: A Nurse’s Story

• “What also unites these writers, though, is the ambition to reach beyond the impersonal discourse in which they’ve been trained, honing in its place what they consider to be a much-needed, affectively enriched vocabulary of patient-carer interaction. This impulse syncs with the disciplinary aims of fields that have come to be known as narrative medicine and the health humanities.”

Rita Charon, “Close Reading: The Signature Method of Narrative Medicine,” in The Principles and Practice of Narrative Medicine, by Rita Charon, Sayantani DasGupta, Nellie Hermann, Craig Irvine, Eric R. Marcus, Edgar Rivera Colón, Danielle Spencer, and Maura Spiegel (Oxford University Press, 2017), p. 157

• Rita Charon – the signature method of Narrative Medicine – Close Reading
• resisting desensitization
• “Dear Life sustains one of those conversations with its reader in an attempt to dispel the generalizing vocabulary of horrors that surrounds terminal illness. By returning affective specificity to seemingly hopeless situations of imminent loss, the book also counters what commentators from the health humanities and disabilities studies, such as Rebecca Garden, have called the “tendency to biomedicalise patients,” replacing “narrow mimetic” representations of “preselected” conditions with detailed portraits of “the intersubjective nature of illness.””

• [definition] pathography – the study of the life of an individual or the history of a community with regard to the influence of a particular physical or mental condition.

• palliative close reading

Reading List:

1. Aleksander Luria, The Man with a Shattered World: The History of a Brain Wound (1972)
2. Sigmund Freud, Fragment of an Analysis of a Case of Hysteria (1901)
3. Oliver Saks, The Man Who Mistook His Wife for a Hat: And other Clinical Tales (1985)
4. Premila Nadesan: Care: The Highest Stage of Capitalism (2023)
5. Sontag, Illness as Metaphor (1978)
6. Jeremy Farrar, Anjana Ahuja, Spike: The Virus vs. The People – the Inside Story (2021)

Resources:

1. https://medicalhealthhumanities.com/ (A Health Humanities Journal started by Arden Hegele
2. https://indianwritinginenglish.uohyd.ac.in/category/health-humanities/ (An Incredibly Useful Indian Health Humanities Resource)
3. https://www.publicbooks.org/will-care-save-us/

Digressions:

1. https://archive.org/details/kissoflamourette00darn/page/n1/mode/2up (Robert Darnton, The Kiss of Lamourette: Reflections in Cultural History)
2. https://www.publicbooks.org/falling-faintly-mcewans-latest/ (related to Hippocratic Oath Paper)

Decision:

My 6th primary source:
The Covenant of Water by Abraham Varghese