Thursday, October 13, 2016

Bonesetters, fish-ingesters, caregivers: some books about healthcare and medicine

[my latest Forbes Life books column]

Readers gravitate to certain types of books depending on what they are experiencing in their lives at a given point, what the old mood is like, and what they need to prioritize – escapism, profundity or some unknowable mix of both. But at times it can feel like certain books are seeking you out, pressing for your attention. In the past three years I have spent a lot of time as a caregiver in hospitals and at home, handling medical situations for family members. Two months ago, even as things escalated dramatically, the online catalogues I received from publishers seemed suddenly full of books involving either healthcare at a macro-level or intimate narratives about living with illness.

The connections got spooky at times. Just a week after my mother was diagnosed with metastatic cancer that had spread from the breast to the bones and other places, I received a copy of the Jerry Pinto-edited anthology A Book of Light: When a Loved One Has a Different Mind, opened the contents page and found my eye alighting on the title of the third story, “My Mother’s Breast”, by Amandeep Sandhu. Then, a day after my mother had a surgical procedure to repair a crack in the spine – the source of the crippling back pain that had belatedly alerted us to the cancer – I waded through a stack of books at home and found my hand on a dust-covered copy of Aarathi Prasad’s In the Bonesetter’s Waiting Room: Travels Through Indian Medicine.

One could call this coincidence, or say that my antennae were tuned to seek out this kind of literature. However, it is also true that the Medicine and Healthcare category has seen a lot of publishing activity in recent times. Among the most popular of these books – capacious, informative but geared to the general reader – are the works of the surgeon-cum-writer Atul Gawande (Being Mortal: Medicine and What Matters in the End and The Checklist Manifesto being the most recent) and Siddhartha Mukherjee’s Pulitzer-winning history of cancer, The Emperor of All Maladies. And there are other, lower-profile publications, not as ambitious in terms of prose or narrative structure, but still worthy and important.

Among these is Dissenting Diagnosis: Voices of Conscience from the Medical Profession, co-authored by the doctors Arun Gadre and Abhay Shukla as an expose of malpractices in private healthcare. Unsurprisingly, I learnt of its existence around the time I was making umpteen visits to a corporate hospital, grappling with the spirit-sapping demons of apathy, inefficiency and profit-mindedness, as well as the demands of having to be in many different places at once. The book became a companion during subsequent hospital stints, and I was tempted to wave it about each time a senior doctor passed by.

This is a neatly organized primer to issues that are seriously undermining the Hippocratic Oath and the view of medicine as an innately noble profession. These include the nexus between pharmaceutical companies and corporate hospitals (or senior doctors), the lack of transparency and accountability in the private sector, and the self-perpetuating system of commissions or “cuts” by which doctors and companies often profit at a patient’s expense. The book draws on the testimonies of nearly eighty doctors (around half of them agreed to have their names published) who were troubled about the flaws in the system. If you have spent a lot of time in hospitals, chances are you will identify with some of the anecdotes included here; if you haven’t, you might be aghast but you’ll also be better prepared to deal with a medical emergency when it does crop up. Given that most of us in such situations are under pressure to act in haste – and not always in a position to think calmly – it is useful to have read something like this beforehand.

While Dissenting Diagnosis deals mainly with modern practices – rooted in the germ theory of medicine and endorsed by internationally approved scientific benchmarks – Prasad’s In the Bonesetter’s Waiting Room takes a more wide-ranging look at the many avatars of healthcare in India. This includes a clear-eyed, occasionally sceptical but mostly open-minded examination of alternate therapies that fall under the collective term AYUSH (an acronym for Ayurveda, Yoga, Unani, Siddha and Homoeopathy): treatments that most corporate hospitals would have little truck with, but which people disillusioned by exorbitant medical practices often turn to, if only to supplement Western medicine.

Prasad’s travels (this book is also a journey of discovery for someone who is of Indian ancestry but doesn’t live in the country) took her, among other places, to the Bathini Goud family in Secunderabad – practitioners of a mystical but hugely popular form of therapy that involves the ingesting of live fish whose mouths have been stuffed with herbal medicine. Here and elsewhere, the author – a biologist by profession – brings a good journalist’s seriousness to her material, even as she speculates about the usefulness of esoteric treatments: do these methods work in the same way that placebos do, with good faith and optimism as driving factors, or are there real, measurable benefits that have eluded the grasp of Western medicine?

Throughout these essays, Prasad provides a sense of her own dual value systems, as someone who has been trained in modern medicine but has also – through the influence of family and friends – stayed open to other forms of healing. This commingling of the personal with the general gives a special texture to many such books, even a work as mammoth as Siddhartha Mukherjee’s latest, The Gene: An Intimate History. Though this is nothing less than a history-cum-biography of the gene, which has so advanced our understanding of the building blocks of life, Mukherjee begins his narrative with a very personal story about mental illness in his family and his resultant obsession with genetic legacies and perils.

Which brings me back to the anthology A Book of Light. Amandeep Sandhu’s piece about his mother’s breast cancer was a reminder that even when the specifics of a case vary, many things about the daily business of caregiving are despairingly familiar. Sandhu was more intimately involved with his mother’s care on an hour-by-hour basis than I (so far) have been, but I could relate to some of the mundane details, such as the business of coping with bathroom flushes that don’t work on full pressure, or a patient’s embarrassment that can soon yield to stoicism.

Other moving pieces in this book include Nirupama Dutt’s “Mothers and Daughters” (the full scope of which is only just about captured by that simple title) and Sharmila Joshi’s poignant “The Man Under the Staircase” about a dimly remembered uncle who, because of mental illness, was confined to a secluded spot under the house’s stairway. The story’s end is heartbreaking: no photo remains of her unfortunate uncle, Joshi tells us, only her own fragmented memories and a drawing he did for her long ago – a sole indicator that he existed and had an inner life, even if it is one that most of us wouldn’t be able to identify with. If there is a single thread running through all these books, it would be empathy – both for the ailing and for the “normal” or “healthy” people who care for them.

[Some other ForbesLife columns are here. And here's a detailed review of Dissenting Diagnosis]


  1. Dear Jai
    I have been a reader and frequenter of your blog for close to 3-4 years now. Yours was one of the few blogs that I felt comfortable sharing the information of my dad's passing last year in a comment (the other being Brangan's blog). Your post today almost compelled my fingers to start typing this note. The reason is two fold: firstly, I too had an ailing father until last year who had metastatic cancer of the prostate that was diagnosed after it had spread to his bones. Just the sight of these words about your mom's diagnosis brought tears into my eyes, renewing my sense of the magnitude of the challenge and loss my family and I went through. As someone newly acquainted with my own theism, I said a silent prayer for you and your mom. I hope the gods heed it.
    Secondly, since my dad's passing, I found solace in reading. I was always someone in love with the idea of reading and books, but I was also and continue to be a distractible reader, with websites like Youtube and its ilk, ready to distract me into wiling the hours away. But in the month after my dad's passing, I would read (often silently and occasionally aloud) in front of my dad's picture (almost compulsively), and that brought on a sense of immense peace. It also seemed as if my dad was guiding me through the words my eyes would fall on. For example, after a row with my mom, as I sat reading in a huffy silence, the book I accidentally opened was one my dad (usually not a reader) loved and listened to even in his last days, and the sentences my gaze fell on were about kindness, and forgiveness, a lesson I felt I needed to be reminded of. Since then, this has happened many times, so much so that I have come to the same conclusion as you have: that it is not only I who find books. Instead, often the books and stories are starting to find me, even if I am buried under a pile of silly gossip websites virtually never frequented by readers or connoisseurs of books and skilful writing, and haven't read a wink in months. This is how I found a book on Rumi (which was filled with stories I had only heard through my own dad) found me in a website devoted to vile gossip about vapid celebrities. A younger and less experienced me would have never believed this and chalked it down to coincidence. But now the word just doesn't have any heft for me anymore. Anyhow, thanks for the post and I hope you and your family stay strong as your mom's treatment progresses. With all my affection and prayers, Your regular reader, Sev

  2. Thanks very much for the comment, Se V, and condolences on your loss. Every situation is so different in the specifics, despite the superficial similarities. It's been an incredibly tough time, with so much to handle at home. Hoping it gets easier at some point, though I don't dare imagine how long that will take.

  3. Dear Jai:

    My wishes and prayers for your mom.

    On a complete tangent, I await your post on PINK/PARCHED and the wait seems to be never ending. I wonder why you haven't still touched upon those films.

    Hope you do so.

    Another regular reader,