Sayendri Panchadhyayi reflects on a journey of waiting for recovery from a rare health condition, considering questions of selfhood and fractured time, provoked by the experience of malady.
“Pain and suffering erode meaning and deny dignity.”
Cassell 1976, 33
Timelines and the hourglass
May 25, 2023
For the last few months Mira (pseudonymised) has been experiencing a numbness and tingling sensation – vernacularly referred to as “jhi jhi dhora” – while turning to the left side. Together with this spasmodic sensation, headache has been a regular companion. The pain from the headache was intermittent, a malaise. Every time pain was triggered, her daily activities came to a standstill. Every time was pain triggered, her body turned to a stationary state from a state of motion, only to be wrecked from within. Initial investigations revealed there was a cyst in her scalp and her headaches were migraines, worsening with increased levels of stress. All these symptoms were dismissed as nothing alarming. Straddling between a teaching job in a far away, remote and idyllic place and life in the city where she grew up, Mira’s daily routine was hectic and itinerant, like many of her contemporaries. Commitment to her out-of-home working hours made her overlook and neglect her migraines. She deemed them simple headaches, something she was dealing with and would continue to live with.
I have known Mira, a former colleague turned close-knit friend, for the last 5 years and prolonged telephone conversations have been a defining feature of the friendship. This year, our telephone conversations were initially punctuated, later interrupted, by headache, blurred vision and loss of appetite due to her declining health. With a history of thyroid issues, she conflated her headaches with indicators of worsening thyroid-related symptoms.
August 24, 2023
It was June, a finding, based on an MRI that her father (her co-primary caregiver, together with her mother) had insisted upon, changed her life forever. She was diagnosed with a malignant osteosarcoma of the parietal bone, a rare bone tumour in the skull, whose long-term behaviour remains unknown (Ha et al. 1999). The preliminary recommendation of surgery, without the knowledge of this growing disease, could have jeopardised Mira’s life. Recounting her experience, Mira and her parents felt neglected and betrayed by the healthcare system in her home state. This feeling of betrayal set her father off in relentless pursuit of what would be lifesaving care: translocal travel to what was perceived as the right place for such treatment – and equanimity in the face of uncertainty.
Prelude
These vignettes from Mira’s life not only capture her tryst with an unknown, rarely-seen health condition, but poignantly track the timeline of her illness trajectory. Misdiagnosis lengthens suffering, making it appear to Mira as a never-ending and inescapable loop. This protracted timeline slowly dunks her into a cesspool of anxiety and trauma. Revisiting trauma whilst remembering how she could have died, flickering hope and mustering residual vim to go on, albeit “missing out” on going outside, carrying out her daily tasks without assistance and being in control of her life. Osteosarcoma smothered her being. The ordeal of living with a chronic condition can mean vitality is eclipsed, with the patient not fully knowing the acuteness of the disease, malaise sprawling from the source to the other parts of the body and the potential for disfigurement.
Mira was now adjusting to multiple timelines — prognosis of recovery made by professional actors; prognosis of recovery made by her parents, who were her primary caregivers and facilitated assisted daily living; and her own perception of a recovery trajectory, grounded in sentience and progress with mobility. This convergence of multiple timelines – at times competing and at others coalescing and complementing – calls for reflection on the concepts of time and temporality within the realm of medical disclosure and awareness of malady. In a close parallel with E. Mansell Pattison’s (1977) conceptual framework of the chronic living-dying phase[1], wherein the dying trajectory is lingering, Mira’s condition evokes the chronic resuscitation-relapse phase as she awaits treatment and searches for the missing piece of the jigsaw puzzle — what it entails to heal from osteosarcoma.
Time and identity in the reconstructed, storied text of illness
Mira’s iterative movements – from home to private clinics, diagnostic centres for tests and hospitals for consultation and, later, an operation – outline established patterns of movement for people seeking care, creating grids and circuits that develop around these medical-clinical sites. She had no clarity on the closure of these circuits, as check-ups, periodic testing and the seeking of multiple opinions from different professional actors became additional activities in the family’s itinerary.
Moreover, the countervailing force of Mira’s intermittent pain made it appear as a reified entity (Csordas, 1996), crawling its way steadily through her world, obfuscating the distinction between her and the pain that engulfed her, disconcerting her family, planting and casting doubts on the possibility of “complete” recovery. She felt she was not the same person she used to be; animosity towards people stemmed from a lukewarm to cold response from her wider family network, chronicling the revelation of osteosarcoma and then encountering their apathy when visiting her in the post-operative phase. Through this, we see time as a paradigm for her to understand her illness and illness as a paradigm to understand time.
Illness – a temporal discontinuity – blurs the difference between before and after, cause and effect (Reissman, 2015). A temporally informed position in understanding illness allows for reconciling the new and multiple relationships to time (Jowsey, 2015). For those with a chronic condition and swerving in uncertainty, temporal disruption often culminates in a meltdown – this was certainly Mira’s experience. Her dilemma: scepticism and distrust were conceived out of a series of bad experiences. Navigating and negotiating multiple spaces through her healthcare journey have disrupted time and space for Mira.
Chronicling her illness aetiology, Mira essentialised temporality or time in healthcare. Analysis of her narrative allows for a teleological understanding of the temporal aspect immanent to illness (Ezzy, 2000). This temporal dimension to healing, makeshift wellness or prognosis of relapse undergirds the entwined time, health and identity. Temporal concerns are consequential to understanding the tonality and texture of Mira’s encounter with osteosarcoma, words indelible in the memory archive, and her pausing to sift through salient vignettes. A personal narrative of illness progresses like a plot, revolving through a temporal sequence with consequential linking of events; a form of time travel, punctuated with flashbacks and flashforwards, establishing narrative as profoundly linked to time (Charmaz, 1999; Reissman, 2015).
Mira’s journey draws attention to the socially unmoored, affective experience of time, the unsettled temporality of care and the entangled bio-politics of subjects responsible for self-care (Cook and Trundle, 2020). Albeit the malady threatened to debase her existence, this narrative became the sum of her efforts to reclaim control and shape her future. This was also probably the reason why Mira kept on getting back to me every month, despite interruptions from coughing and exhaustion. She was all too aware of the multifaceted impact of osteosarcoma and wanted to share her story of its consequences for personhood, and of the medical triumphs and failures she experienced, with a wider pool of people. Recovering is a complex process wherein acknowledging competing desires and temporalities is essential to engage and empathise with the recovering body and identity. This is what Mira sought to do through our conversations.
Epilogue
Dealing with a malady disarrays the essence of time, space, body and identity. Right from the experience of malaise to the diagnosis, the individual begins the struggle with time as waiting for recovery, translated in the local cosmos as “bhalo hoye jaowa” (getting well), “thik hoye jaowa” (feeling better) and “sere otha” (recuperation). This waiting is often transformed into chronic waiting, as the doubt of complete recovery and its vestiges continue to lurk, portending to resurface at any time. As these permeate into the identity, time appears as ambiguous and fosters an ambivalent association with it. Since the inception of signs and indicators of this malady, time appeared as stretched and protracted for Mira, meandering towards an unknown, alien and uncharted territory. The temporal ruptures in quality healthcare interventions inject long-term fear, distrust and trauma, furthering the gap between the people seeking care and the actors and institutions responsible for care. Perhaps sharing stories, such as Mira’s, could be a profound way of looking at identity, personhood, care and embodiment while waiting for recovery.
Notes
[1] E. Mansell Pattison (1977) proposed the living-dying interval theory to understand the process of the dying trajectory, from the “crisis of the knowledge of death” to the “point of death”. He identified three such clinical phases – the acute crisis phase, the chronic living-dying phase and the terminal phase. In all of these phases, a person’s adaptation to their knowledge of death, and their dying trajectory, remained Pattison’s interest. In the case of Mira, the application of Pattison’s chronic resuscitation-relapse phase refers to the continuous struggle between the anticipation of feeling better and the decline in her general wellbeing, together with its impact on her recovery trajectory.
About the author
Sayendri Panchadhyayi is a member of visiting faculty at the National Law School of India University (NLSIU), Bangalore, teaching a self-designed course on ”Ageing, Lifecourse and Death Studies”, and a research fellow at IIM Calcutta, working on “Healthcare Inequalities in India: Mapping actors, logics and care practices”. As an interdisciplinary sociologist, her research dwells in the areas of medical anthropology, cultural gerontology, social geography, sociology of care, thanatopolitics and policy research. Her upcoming research activities include: (virtual) participation in a roundtable discussion on the topic of “Care in Crisis”, organized by Centre for Oral History and Digital Storytelling and the Montreal History Group, in November 2023; a keynote lecture at the “Gender and Demography” conference, organized by Manipal Centre for Humanities (MCH), in February 2024; and a (virtual) guest talk at the Global South Hub, Centre for Social Science Research, George Mason University, USA, in March 2024.
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