Narrative, Mental Distress, Care and Family in Jerry Pinto’s Oeuvre – the polyphony

Kirti Verma explores the critical connections between literature, mental health, and the emergence of medical humanities in India through the work of writer, translator, poet, and editor Jerry Pinto.

Medical Humanities in India: Global Frameworks and Local Narratives

The field of medical humanities, an interdisciplinary domain that brings literature, philosophy, ethics, and the arts into conversation with medical practice, has gained significant traction globally. Klugman has described it as a “field concerned with understanding the human condition of health and illness in order to create knowledgeable and sensitive health care providers, patients, and family caregivers” (Klugman and Lamb 2019). Rooted largely in Western academic traditions, the medical humanities contribute to a more humane, reflective approach to medicine by emphasising the subjective dimensions of illness, the moral complexity of care, and the cultivation of empathy through narrative.

Western frameworks like Rita Charon’s concept of narrative medicine (2002, 2006) and Arthur Frank’s focus on patient storytelling (1995) have emphasised the clinician’s role as a listener and moral agent. Similarly, Arthur Kleinman’s distinction between disease and culturally situated illness (1989) resonates with Indian realities, where the experience of illness is often communal, shaped by family, religion, class, and stigma. These frameworks centre the doctor-patient relationship, assuming the doctor is trained to interpret narratives compassionately. Together, these theories highlight that healing involves recognising how illness is experienced and not only treating the disease. However, applying these theories to the Indian context is not always seamless. Medical care in India is frequently inaccessible, distrusted, or financially unaffordable, leading families to become primary caregivers.

In the Indian context, applying these models requires recalibration. One’s access to clinical care is often limited, fragmented, or financially unaffordable. The medical institutions may be distant physically, socially, and emotionally, leaving families and kinship networks to become primary caregivers and interpreters of illness. In this setting, the work of narrative care shifts from clinician to family. This raises critical questions: What does narrative medicine look like without a consistent clinical listener? Who interprets the patient’s story? Often, it is the family who takes on this role, navigating care through expectations and economic constraints. The patient’s narrative does not disappear; instead, the task to interpret it gets relocated. When clinicians are unable to engage with or respond to the patient’s account fully, this crucial responsibility often transfers to those providing continuous care; most commonly, the family. To adapt these frameworks to India, we must recognise how care and meaning-making are embedded in the home, not the clinic, and shaped by familial rather than professional listeners.

In the Introduction, Pinto recounts his own experience growing up with a mother who had bipolar disorder, which inspired Em and the Big Hoom. The reaction to the book, especially from those with similar experiences, prompted him to collect the stories shared in the non-fictional anthology called A Book of Light. Pinto reflects on the difficulty of discussing mental health conditions and the role of writing as relief. He urges his readers to talk about their pain as well “If you have a story that you would not like to share but still would like to commit to the word, write it down, record it, draw it, paint it, shape it in some way. I cannot assure you that it will help but it will not harm you” (Pinto 2016).

In India, medical humanities is still negotiating its relevance within a healthcare system and cultural landscape distinct from those in which it first evolved. This article proposes that the work of Indian writer, translator, and journalist Jerry Pinto offers critical contributions to the emerging Indian medical humanities landscape. In particular, his semi-autobiographical novel Em and the Big Hoom (2012) and the non-fiction anthology A Book of Light (2016) deeply engage with themes of illness, caregiving, and familial endurance.

Pinto’s narratives foreground the invisible labour of care within homes where psychiatric treatment is either stigmatised or unavailable. His works not only reflect Indian realities but also challenge and enrich global theoretical frameworks, insisting on a medical humanities that is both universal and deeply rooted in local specificities. Pinto’s writing demands that healthcare students and practitioners cultivate narrative competence, which helps “to follow the patient’s narrative thread, to make sense of his or her figural language, to grasp the significance of stories told, and to imagine the illness from its conflicting perspectives” (Charon and Montello 2002). Additionally, Pinto’s work shifts the narrative focus from clinic to home. Pinto adds complexity by centring the caregiver’s voice, particularly the family members, through lived experiences in A Book of Light and the semi-fictional world of Em and the Big Hoom, which shows how caregiving involves sustained emotional labour, shaped by love, frustration, duty, and silence. His work highlights how mental illness transforms everyday relationships, especially in societies where gender roles and family hierarchies shape care practices. This expands global frameworks by insisting that the caregiver’s suffering and narrative must also be part of the picture, not just the patient’s.

Em and the Big Hoom: A Semi-Autobiographical account of living with a bipolar parent

Em and the Big Hoom is an emotional account of a family’s struggle. The son narrates the semi-autobiography as he pieces together his mother’s life, personality, and history through memories and conversations. The story is about Em (Imelda), the vibrant, unpredictable, witty, and mentally ill mother of the narrator. She has bipolar disorder, goes through periods of depression and psychosis, and has attempted suicide multiple times. The novel is non-linear, jumping between different time periods and memories. Her mental illness is a constant, looming presence, but it never fully defines her. Em’s relationship with the Big Hoom (her husband Augustine is central to the novel. The nonlinearity of the novel mirrors the nature of memory as the narrator is reconstructing his mother’s life from fragments.

Memory is rarely linear, especially when dealing with trauma and mental illness. According to Arthur Frank, “Lives and groups require constant reassembling, …and stories reassemble, both individually and collectively. But reassembly is as much about change as continuity; the act of reassembling does not mean keeping things, including memories, as they are” (Frank 2010). The scattered timeline mimics how we remember people in moments, impressions, and emotional snapshots, not in tidy chronology.

The structure, moreover, reflects Em’s mental state: it is episodic, sometimes manic, sometimes depressive, and always layered. This fragmentation gives the reader a sense of the confusion and intensity of living with or near mental illness. By revealing details out of order, Pinto lets us see who Em was, not just as a patient, but as a woman: complex, witty, fierce, and loving.

The narrator seeks to understand Em better, not just as a mother but as a person. He questions her, reads her letters, and uncovers stories from her youth, trying to understand when her illness slowly took over. He wrestles with guilt and frustration, trying to make sense of a parent who is both deeply loving and heartbreakingly unreachable at times. Throughout the book, the family copes with Em’s erratic behaviour: her outbursts, her delusions, and her suicide attempts. These moments are portrayed with stark honesty, yet Pinto’s use of humour provides a delicate balance, never diminishing the pain but allowing room for tenderness. The novel gives a rare and raw portrayal of bipolar disorder in conservative Indian society.

The novel could hold a significant place in Indian medical humanities as it highlights taboo topics like suicide, psychiatric admission, and medication in a way that is culturally grounded yet universally resonant. The author writes, “It occurred to me then that the mad in India are not the mentally ill, they are, simply, mad. They have no other identity” (Pinto 2012, 196). Em and the Big Hoom also narrates the debilitating state of psychiatric hospitals in India. The narrator comments, “On a college trip to the Thane Mental Hospital, I had seen what I thought was the worst of India’s mental health care system” (194). Moreover, Pinto explores other medical issues, including an intense conversation about abortion, seamlessly weaving them into its portrayal of what it was like to be a woman in India, in Imelda’s time. However, for most parts of India, things do not seem to have changed much. Pinto’s use of humour, non-linear storytelling, and deep emotional insight makes the narrative both accessible and profoundly affecting. The novel complicates the notion of caregiving. Her son, who is also the narrator, loves Em deeply, but he also feels burdened, frightened, exhausted, and even resentful. In one of the passages of the book, he says, “This was what made everything about her illness so difficult to understand. If she had had a paranoid attack last night, where was it now?” (202), further adding that “Em was not mad. She was simply another malingerer. Like any other malingerer, she wanted to evade her ordinary responsibilities” (203). There is no easy virtue in caregiving here, only loyalty, necessity, and a complicated, enduring love. Pinto shows how mental illness becomes a family condition, not because everyone is ill, but because everyone is entangled in it.

For students and practitioners of medicine, Em serves as an essential text that bridges empathy with understanding, making space for more humane, reflective, and culturally aware approaches to care in the Indian context.

A Book of Light: Personal Stories of Carers and Patients

A Book of Light: When a Loved One Has a Different Mind an edited anthology by Jerry Pinto. The anthology comprises of deeply personal essays and stories from various contributors who have lived with or cared for loved ones with mental illnesses. It not only sheds light on the human psyche but also deals with the emotional labour required to support those whose minds diverge from the norm. The central concerns of the book revolve around complexity, pain, and the emotional turmoil involved in caring for someone with mental illness, especially within the Indian middle-class context. Each essay tells a unique story. ‘Papa, Elsewhere’ by Sukant Deepak is a powerful story of the author’s father, Swadesh Deepak, a celebrated writer with bipolar disorder who eventually disappeared without a trace. The narrative is laced with pain, irony, and brutal honesty.

‘My Mother’s Breast’ by Amandeep Sandhu focuses on the intersection of physical and mental illness, portraying his mother’s schizophrenia and later battle with cancer. It is a moving reflection on caregiving and filial devotion in the face of suffering. ‘Abhimanyu, Our Son’ by Madhusudan Srinivas is a beautiful story about a parent trying to understand their autistic son’s world while being supported by friends and neighbours. The collection contributes to critical conversations about the stigma surrounding mental health, the confusion and guilt of caregivers and a quiet, persistent hope for compassion and understanding. Rather than prescribing solutions, the anthology invites readers to bear witness to some profoundly human stories. Pinto writes, “The stories in this book do not seek to hold out answers. They tell you what happened and how it was dealt with. You may often disagree with what was done or how it was done. This is inevitable” (12). Teaching this anthology in a classroom invites students to see the human side of patients as well as those who care for them. The book offers unflinchingly raw and deeply unsettling accounts, marked by their stark realism and emotional intensity.

Conclusion

While scholarship on medical humanities in India continues to draw on theoretical frameworks from Western scholarship, it can be effectively taught in Indian institutions with locally rooted narratives penned by Indian authors. As an emerging field, we can find enough material to initiate a conversation about the subject in our languages and contexts that are capable of bringing in further scholarships and even rediscovering Indian literature in a new light. Like Pinto’s works, as this article has explored, Indian literature is rich with other such intimate explorations of mental illness that move beyond clinical definitions to embrace the emotional, linguistic, and social dimensions of suffering and survival. These narratives not only complicate the dominant biomedical discourse but also offer a more humane and culturally resonant understanding of mental health in India.

By incorporating such texts into the medical humanities curriculum, especially those that are written in or translated from Indian languages, we can begin to reframe how mental health is taught and understood. Literature, thus, not only reflects illness, but also becomes a method of inquiry. This literature, moreover, reimagines empathy, interrogates stigma, and foregrounds the ethics of care in everyday life. In doing so, it opens space for a more inclusive, context-sensitive, and emotionally attuned approach to mental health education in India.

About the Author

Kirti Verma is currently pursuing her PhD in English Literature from the University of Delhi, India. Her current research is focused on autobiographical writings of illness. Her academic interests lie at the intersection of the sciences and humanities, with a particular focus on how multidisciplinary approaches can enrich our understanding of the world. Find her on Instagram or email her at iamkirti822@gmail.com.