Seeking closure in clinical spaces
Fieldwork, for me, has always been deeply personal and extremely difficult. Over a span of nine years – from losing my father to cancer in 2010 to conducting fieldwork until early 2019 in the same clinical spaces where he was treated – I have attempted to channel my grief through the time of my bereavement and, objectively, in understanding the clinical space. I returned to the same clinical spaces where my father underwent treatment, at times by chance and, sometimes, to seek closure.
On a humid September evening in 2009 in Chennai, India, my parents drove down to the dentist to enquire about the persistent pain that my father had been experiencing in his gums for about a year. Several tests later, a biopsy eventually revealed something that was diagnosed as oral squamous cell carcinoma: a rigorous cancer of the mouth, tongue, and lymph nodes. Within a month of his diagnosis, he was wheeled into surgery at a top private hospital in Chennai. The surgery was successful and was followed by a few cycles of radiation therapy to kill any remaining cancer cells. Radiation therapy cycles have side effects that include a loss in appetite and taste, fatigue, vomiting, and blackening of the skin where therapy is directed. I waited with him during these cycles, placed my hand on his blackened cheek as he lay on my lap, tears rolling down his eyes in pain. But the cancer returned in three months, stronger this time, almost spreading to his left eye. A decision had to be made about the second surgery, which involved a loss of the eye, within a twelve-day waiting period – after which the cancer would likely spread to the brain. This was a crucial decision because he was diabetic and recently recovering from the extensive first surgery. The only other option, gathered from a second opinion, was chemotherapy, a course we took instead. The decision-making process was excruciating for the family, with both options delivering painful, uncertain outcomes.
Once diagnosed, the cancer treatment and care cycle are long, time-consuming and involve waiting. Waiting as a method (Janeja and Bandak 2018) is crucial for anthropological inquiry as it offers critical insights into the everyday-ness of hope, uncertainty, and expectation. In the cancer ward, I saw patients and families write out forms, make payments. They waited to receive chemotherapy drugs and radiation therapy, a process that I closely followed in the ten months of my father’s treatment.
This was also the same hospital where I conducted fieldwork later in 2015, enquiring about how cord blood stem cells are used in the treatment of leukaemia (blood cancer) and thalassaemia (a genetic blood disorder). By returning to the same clinical spaces, re-living pain related to disease, and by being part of the same clinical processes of treatment, I intended to seek closure by normalising living with disease. In one such instance, I observed a bone marrow blood stem cell extraction and transplant from one sibling to another, to treat the elder sibling for thalassaemia. Across from me on the operating table was a boy, aged six. Dr. X walked in, as was routine, and continued expertly to turn the boy onto his stomach, enquired about the right dosage of anaesthesia. I watched as she injected a thick needle in the boy’s hip. The needle did not pierce the flesh easily. She winced a bit, tightened her grip, and turned the needle a little to the left and a little to the right, almost drilling through the flesh. The boy moaned a little. She continued this process until the needle touched his hip bone. Her assistant immediately brought the collection bag and placed it on a steel table near the feet of the boy. The plastic sheet around the boy’s hip collected the blood dripping from the fresh wound and the rest was transferred to the collection bag, continuously shaken to prevent clotting.
She turned to me as the child was turned onto his back, and the wound cleaned and closed with a white gauze. ‘This boy is saving his brother (aged seven-and-a-half) today. His brother is a thalassaemic and his sibling was found to be an exact match’. In this case, the sibling could be the donor but in other cases, the quest for finding an exact match for a blood stem cell transplant sometimes took months or years. Many backed out, did not respond when contacted for a transplant, or cited family reasons which were not necessarily true (‘parents do not agree’ or ‘wife will not allow’, for example). Having said this, Dr. X left the surgery room and the boy was wheeled out into the waiting hall. There, I saw the mother whisper a prayer in English and say ‘I’m here’ to the unconscious child while the father held the other sibling in his arms and kissed him in reassurance.
As I observed this, I felt tears drenching my green face mask and a sudden shortness of breath. Almost six years earlier, in the same clinical space, I had kissed the top of my father’s freshly shaven head in reassurance before his surgery. Grief has both an emotional and physical response (Charmaz 1980) but by observing these procedures and conversing with parents and healthcare professionals, I began to normalise life and body after disease. I saw the human body heal completely after a stem cell transplant, thereby attaining a new normal (Canguilhem 1990) of life and living. More importantly, an ethnography of waiting halls provided unparalleled insights into people’s lives, where my days were filled with compassion, love, and assurances from strangers who eventually became friends.
Michel Foucault (1994) would have pointed to the fact that the clinic is a space where disease and expertise meet, but it is also a space where emotions run high, loss has no measure, and hope is an ideal. Grief, as I have learned, has no timeline; there is a beginning but no end, and one learns to live with loss. Grieving for my father took me back to the spaces where I last saw him undergoing treatment and, in one of these field cases, where he passed. By going back and conducting fieldwork in the same spaces, I sought to normalise life surrounding dis-ease (Canguilhem 1990) by interpreting the after-life (Arif 2016) of cord blood stem cells through banking. In seeing patients return to health, I attempted to make sense of the ‘new normal’ that is life after disease, which provides some semblance of closure.
About the author
Amishi Panwar recently completed her PhD in the Department of Anthropology and Sociology at the Graduate Institute of International and Development Studies, Geneva. Her thesis, titled ‘Banking on Cord Blood: Decoding Amulets and Canisters in South India’, analyses regeneration as a scientific-cultural concept by examining the working of public and private cord blood banks with a special focus on traditional methods of cord blood storage.
Arif, Yasmeen. 2016. Life Emergent: The Social in the Afterlives of Violence. Minneapolis: University of Minnesota Press.
Canguilhem, Georges. 1990. The Normal and the Pathological. New York: Zone Books.
Charmaz, Kathy. 1980. The Social Reality of Death: Death in Contemporary America. Boston: Addison-Wesley Publishing.
Foucault, Michel. 1994. The Birth of the Clinic: An Archaeology of Medical Perception. New York: Vintage Books.
Janeja, Manpreet K., and Andreas Bandak, ed. 2018. Ethnographies of Waiting: Doubt, Hope and Uncertainty. London: Bloomsbury Academic.