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Life stories through the lens of illness

New medical non-fiction tackles a host of issues, from political interference in health to being a caregiver

There is an emerging trend of books being written by reputed doctors and healthcare professionals as well as patients. Photo: iSTOCKPHOTO

By Kinshuk Gupta

LAST PUBLISHED 20.08.2023  |  05:35 PM IST

Growing up with a grandmother whose body was failing her, I was terrified of diseases. To me, they were strange events of probability, catching a person off-guard, leaving them with pain, medications and many needle pricks. And yet, they made me curious. I would feast, rather obsessively, on the American physician-author Robin Cook’s medical thrillers—they let me enter engrossing and morally slippery territories where the stakes were always high.

Soon, however, I began to realise that these stories were very different from what I was watching on TV, in film, or in my doctor father’s hospital in a small town in Haryana. My disconnect from these stories widened when I became a medical student. I saw that despite there being many reputed medical professors—and circumstances that affected health and healthcare—not many in the medical field in India write about these. I longed for literature, both fiction and non-fiction, that I could relate to.

A few books that came out this year—like Private And Controversial by Smriti Parsheera; Most Of What You Know About Addiction Is Wrong by Anirudh Kala; The Invisible Enemy: A Global Story Of Biological And Chemical Warfare by Girish Kuber, translated by Subha Pande—had me excited. And over the last few weeks, Heartfelt by P. Venugopal, Silver Lining by Kamal Shah and My Father’s Brain by Sandeep Jauhar only cement my faith in the country’s emerging trend in medical non-fiction. Here’s a look at these three.

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‘Heartfelt’, P. Venugopal

Honest and heartrending, it traces the journey of P. Venugopal, a cardiac surgeon, as he goes on to set a record for performing India’s first successful heart transplant. During his service at the All India Institute of Medical Sciences (Aiims), Delhi, which spanned over half a century, he was instrumental in creating a world-class heart transplant unit, devising new techniques for operating on cardiac myxomas and Tetralogy of Fallot, a birth defect affecting normal blood flow through the heart, and others, training multiple generations of cardiac surgeons.

While the personal story of tenacity is immersive and uplifting, for me it was the stranglehold of politics and politicians on medicine that is the highlight in Heartfelt.

'Heartfelt' traces the journey of P. Venugopal, a cardiac surgeon, as he goes on to set a record for performing India’s first successful heart transplant

Dr Venugopal recalls how, when Dr Christiaan Barnard, famous for inventing the University of Cape Town Lenticular Prosthesis, visited Aiims in 1965, a rumour spread that the health minister would be questioned in Parliament because a “surgeon from an apartheid country" was being hosted. He had to be whisked back to South Africa the same night. In 2005-06, when Dr Venugopal became the director, a political intrusion led to the displacement of major office-bearers without any notice; this had to be fought off in the Supreme Court later. Deeply reminiscent of the doctors’ resistance to the introduction of the Right to Health Bill in Rajasthan or the National Medical Commission’s (NMC’s) confused stance on the NExT (National Exit Test) exam, such incidents set in stone the fact that political intrusion into medicine without apt expertise can have baffling ramifications.

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‘Silver Lining’, Kamal Shah

This book, which came out shortly before Heartfelt, is a saga of a patient’s perseverance and desire to bring change.

In July 1997, author Kamal Shah’s world suddenly shrank to home and hospital. Just weeks before he was to leave for the US, the grim diagnosis of a kidney disorder had him hooked to a “machine bigger than a washing machine" in “an enclosure meant for tortoises in the zoo". From one doctor to another, from seeking a cure in Ayurveda, to homoeopathy, to moving to Mumbai to try water treated with magical spells, the idea of a normal, healthy life eluded him.

The book lays bare Shah’s struggles, which drove him to partner with his entrepreneurially-driven engineer friend Vikram Vuppala to set up NephroPlus, now a leading dialysis provider in the country.

In July 1997, author Kamal Shah’s world suddenly shrank to home and hospital

The fact that chronic kidney disease (CKD) is a silent killer in India—it is pegged at a staggering 15%, as opposed to a global 9%, and dialysis is the only affordable and accessible solution—and little is known about it, is what makes this largely personal memoir urgent and important. Never dabbling in research to present a broader problem statement, the writing is simple, easy to read. However, as the focus shifts from a personal story to NephroPlus, the writing turns dull and tiring.

‘My Father’s Brain’, Sandeep Jauhar

Jauhar, a US-based Indian-American cardiologist, deals with his scientist father’s patchy memory, slip-ups and squabbles as his consciousness gets clouded with Alzheimer’s.

Jauhar’s fourth book, this has to be one of the best memoirs on illness by doctors—including, but not limited to, When Breath Becomes Air by Paul Kalanithi and Being Mortal by Atul Gawande. These books show doctors as human beings, vulnerable and impuissant, as they slip into the shoes of a patient or caregiver and take difficult decisions. The objective distance, the act of depersonalisation a doctor learns during rigorous training, is suddenly lost. Emotions take over.

For a year and a half, Jauhar, despite being a doctor, misses all the red flags and attributes his father’s forgetfulness to old age. A big chunk of the book questions the slippery boundaries of autonomy—and a host of ideas on memory, personhood and end-of-life care.

When the other two siblings, Rajiv and Suneeta, tired of the father’s goof-ups and tantrums, think of sending him to institutional care, Jauhar rejects the idea outright. He is also against therapeutic deception—a practice where a patient is told lies to complement their fabricated stories—because he believes this will take away power from his father, turning him into a “miniaturized version of his former self". Such deliberations in the book made me wonder about the brain defining the self, and how even a minor defect is sufficient to erode one’s entire personhood.

Sandeep Jauhar, a US-based Indian-American cardiologist, deals with his scientist father’s patchy memory, slip-ups and squabbles as his consciousness gets clouded with Alzheimer’s

This memoir stands out because the writing is not only slow, sharp and sympathetic but also brutally honest. Jauhar uses elements of fiction, like Adam Kay’s bittersweet 2017 memoir, This Is Going To Hurt, or Siddhartha Mukherjee’s explorative dive into cellular biology with The Song Of Cell (2022), to weave a visceral tapestry of words. His matter-of-fact descriptions of grief, grousing and regret plough into a caregiver’s core. At one point, the thought of choking his father to death crosses his mind. Next, he is overwhelmed with love and care for him.

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The ultimate moment of poignancy takes hold when Jauhar, never having been on the receiving end of a doctor’s clinical and rational suggestion to take a patient off a ventilator, is riddled with indecision and feelings of resistance to accepting an inevitable end. His years of experience in the field are now almost irrelevant. The force of the inevitability of life, and its end, as seen through his experience, is nothing short of enlightening, gutting and humbling.

Kinshuk Gupta is a resident doctor and the writer of Yeh Dil Hai Ki Chor Darwaja, a book of LGBT-themed short fiction.