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Silence at the end of life: Multivocality at the edges of narrative possibility

2023; Wiley; Volume: 125; Issue: 4 Linguagem: Inglês

10.1111/aman.13922

1548-1433

Annemarie Samuels,

Grief, Bereavement, and Mental Health

“If God wants her to get better, she will get better,” Nila said in a comforting way.1 We were in a major public hospital in the city of Banda Aceh, standing at the bedside of a young woman suffering from AIDS-related toxoplasmosis, and talking to the mother who nodded acquiescingly while gently rubbing her unconscious daughter's cold legs. Back in the hospital corridor, Nila whispered that it was extremely rare that anyone would recover from such a grave condition. Nila was one of the HIV-support-group workers with whom I conducted participant observation during my ethnographic fieldwork on HIV care in the Indonesian province of Aceh. Her soothing religious words were exemplary of a way of talking that characterized interactions and stories of end-of-life care. Rarely would caregivers directly refer to the end of life as nearby, or dying as a process one needed to start preparing for. Life and death, people in Islamic Aceh cautioned, are in God's hands, so one could never know with certainty whether the last phase of life had started. In recent decades, there has been a growing societal and academic interest in silence around death and dying. With the growing medicalization of death, social scientists argue, dying has become at once further postponed and more difficult to discuss, giving rise to countertrends that encourage an open discussion of dying.2 Yet, if the unspeakability of dying is increasingly thought of as a problem, anthropologists have also nuanced the emphasis on speech in end-of-life care models, showing how people may care in and through silence (Shohet, 2021), how different cultural and ethical notions of (not) discussing death and dying meet (Arkin, 2020; Aulino, 2019; Stonington, 2020) and how nondisclosure of terminal illness may be a way to cope with social and psychological demands, by temporarily living “as if” healing would still be possible (Banerjee, 2020). As processes of dying are culturally diverse and always socially situated, so are the affects, experiences, and moral evaluations of the silences that permeate the social worlds people navigate at the end of life. Extending this line of inquiry, in this essay I attend to modes and moralities of (not) articulating dying in situations of advanced illness, highlighting the multivocality of narrative praxis in silent reverberations. Drawing ethnographically on the narrative of one HIV-positive Acehnese mother caring for her two critically ill children, I explore expressions in between articulation and nonarticulation, the affordances and limits of such multivocal expressions, and the histories that they reverberate. Zooming in on end-of-life caregiving as a practice in which the ethical work of articulation and nonarticulation is particularly salient, this exploration of silent reverberations also underscores ethnography's potential for broadening narrative horizons by listening to silences in a way that, as Dragojlovic (this collection) suggests, neither celebrates silent agency nor assumes speech to be “the only pathway for achieving equality and empowerment.” As Mary Steedly (1993, 2013) has shown in her work on Sumatran Karoland, attending to expressions beyond dominant narrative conventions helps us hear ephemeral stories, stories that are at the limits of narrative possibility but also reshape those limits. Hearing silent reverberations within and beyond narratives requires, as this collection suggests, an affective and relational practice of attuned listening (see introduction, this collection). As narratives entangle personal and socio-historical silences, an attuned listening to narrative expressions may help us attend to the silent reverberations paradoxically present in words, sentences, and gestures that reconfigure—if ever so slightly—narrative possibilities, even, or perhaps particularly, at the end of life. One of the many remarkable women I met through Nila's support group was Amira. During my fieldwork (2013–2014), I often walked through the hospital corridors with the young widow and mother of two. We waited together at the policlinics, at the pharmacy, or in the restaurant, her eight-year-old daughter Zarah eager to practice speaking English with me, while five-year-old Ulfa was running around. Amira told me how her husband, Hafiz, had died when she was eight months pregnant with Ulfa. He had been diagnosed with AIDS only a few weeks before his death, and Amira and Zarah also tested positive for HIV. Her cesarean section could not prevent Ulfa from contracting the virus as well. Hafiz had likely been infected during his long time away from the village during the decades-long violent separatist conflict that had been going on in Aceh until the peace agreement of August 2005, eight months after the devastating 2004 Indian Ocean Tsunami. Amira told me that after receiving the diagnosis she felt like the “sky had collapsed” and there was no place for her anymore. Coming from a poor rural background, she had limited financial resources. Social support was scarce as well. Her in-laws only very rarely came to check on them, neighbors who had heard about the HIV diagnosis avoided them, and after her mother's death, Amira's younger sister was the only person she could rely on. Amira regularly spoke about her faith, telling me how she had become more pious after her husband's death and how she tried to lead the life that God had given to her and trust there would be a way forward. At the same time, she often wondered why she had to face this trial and how she could possibly keep going. In the following years, we kept in touch through social media and phone calls. Ulfa and Zarah were often sick. Using all her meager resources, Amira frequently undertook the five-hour bus ride to visit the hospital in the provincial capital. While some medical staff were attentive, she told me, others scolded her, telling her that her daughters’ illnesses signaled that she was not taking good care of them. Amira's predicament of limited mobility and family support was strongly shaped both by gendered inequalities and by moral judgments about her parenting and her limited capacity to speak up to those on whom she depended for medical care. In 2017, Ulfa was hospitalized several times. Amira told me desperately that the physicians rarely spoke with her and never examined Ulfa, instead prescribing medications that seemed to have no effect. While Amira did not herself refer to the colonial and postcolonial histories of mistrust in biomedicine in Aceh (see Smith, 2015), these legacies of strained relations between patients and biomedical caregivers resonate in her experiences of entangled violence and care. When in December Ulfa could not bear being in the hospital any longer, crying with pain every time a nurse tried to insert an IV, she asked her mother to take her home. This did not mean giving up on healing, Amira emphasized both then and later, for they kept visiting local healers. Still, Ulfa passed away 10 days later, sitting on a motorcycle in between Amira and Amira's sister on their way back from a trip to one such healer. After Ulfa's passing, Amira said she (Amira) had felt death was coming, because during those last days Ulfa had kept holding on to her firmly. Before Ulfa's death, Amira never talked about the possibility of dying. In our conversations, she would at most use a passive grammatical construction to say, “Hopefully nothing undesirable happens.” This was common for the people I spoke with in Aceh. Rather than openly discussing the dying process and concomitant care trajectory, they often looked for physical signs or behavior that would indicate the imminent end of life and that, many argued, the dying person might articulate without being aware they were doing so. Some people told me how they had recognized such signs in retrospect, after the death of their loved one. Others explained how recognizing the signs of dying had led them to particular actions, such as calling the family and reciting the Qur'an in the final hours before death. Affectively announcing the nearness of death, such signs exceeded verbal articulation at the time of their expression. Silence was integral to the “affective effects” of these signs (see Cassaniti, this collection). Amira's retrospective narrative of the last day of Ulfa's life was colored by regret. Regret because, as she told me, although she had felt that death was coming, if she had better interpreted the sign of Ulfa wanting to be carried by her, she might have held on to her while she died, instead of driving the motorcycle to visit another healer. In the midst of grieving, illness kept troubling the family. After Ulfa's death, Zarah's health started to deteriorate quickly, and half a year later she was in the same hospital in the same condition her sister had been in, floating in and out of consciousness. Again, Amira told me how she experienced a lack of medical attention. “It was at that moment,” she told me on the phone a few months later, “that a doctor took me aside and said: ‘Madam, don't cry in front of her, in this condition anything may happen. You can interpret my words yourself, right? Don't cry in front of her, give her everything she wants now.’” I asked Amira why the doctor had told her not to cry and she answered that her crying could have increased Zarah's burden. I later learned that this doctor, whom Amira never referred to by name, was the nutritionist on the caregiving team. She was the only medical caregiver Amira had directly quoted during our phone calls. I thought of the taboo on crying during a relative's transition to the afterlife and how the nutritionist had literally asked Amira to read into her words that which she could not say directly. Strikingly, in Amira's retrospective narrative this nutritionist's advice came right before an almost miraculous turn of events. The pediatrician changed Zarah's combination of antiretroviral medicine to an adult regimen, after which she started to slowly recover. When Amira recounted the whole story to me on the phone, she was back home with Zarah. Almost a year later, Amira told me the same story again. This second narration was similar to the first, and yet—perhaps due to the later moment in time or our conversation now taking place in person—Amira was even more explicit, both about the possible meaning of the nutritionist's words and about what the nutritionist's attention amid the silence she experienced from most other caregivers had meant to her. It was August 2019, and we were sitting on the wooden platform in front of her house. Now-13-year-old Zarah was eyeing me from the opposite bench, her loose headscarf barely concealing how thin she had become. Amira said that Zarah was still weak; sometimes she could go to school, sometimes she could not. Recounting the previous year's hospitalization, she again brought up the nutritionist, right before describing Zarah's recovery. “Madam, don't cry in front of her. Give her everything she wants now.” I asked again what she might have meant, and Amira sighed, “She had seen Ulfa before, so perhaps she thought [Zarah] would not have a long life anymore.” Then she smiled faintly and reached for her phone. She had sent the nutritionist pictures of Zarah through WhatsApp, she said, to which the nutritionist had responded with pleasant surprise. The nutritionist's words were the closest a caregiver would usually come to suggest the dying process might have started. While they could be read as an indirect way to announce dying, a reading the nutritionist herself indeed appeared to invite, their affective force may also have resulted from the dynamic of articulation and nonarticulation that they engendered. She had translated the unspoken bodily signs into a verbal message that retained the uncertainty of the signs. Perhaps, then, like Nila's religious dictum, by not directly referring to dying, the nutritionist's words confirmed both the possibility and the uncertainty of the approaching end of life, recognizing Amira's predicament by articulating a future perspective, but not definitively so. As suggested by their sustained contact on WhatsApp, these words that both did and did not speak of death and that contrasted sharply with the silence of some of the other medical caregivers were indicative of the affective relationality in and beyond that moment, and perhaps the reason why Amira recalled them precisely in her multiple narrations of a period that she herself later described as “worse than trauma.” All narratives rely on exclusions, exclusions that have historically affected some more than others in what Mary Steedly (1993) has called the “social production of ephemerality”—a concept that she used especially to highlight “the iterative nonrecognition of women's contributions” (Spyer, 2020, 39). By listening to and narrating those stories that do not fit dominant narrative conventions, Steedly (1993, 31) suggests, we can move “(slightly) against the grain of official discursive practices.” Similarly, for Saiba Varma (2020, 31), a different “politics of hearing” requires that we listen beyond public discourses that limit the ways in which stories can gain meaning. These insights inspire me to reflect on Amira's story in the socio-historical context that shapes (im)possibilities of speech and silence in her care trajectory, as well as to attend to those specific moments in her narrative that sit between articulation and nonarticulation and that both silently reverberate histories and challenge the limits of narrative possibility that socio-historical structures create.3 In the context of end-of-life care, attuned listening to such moments of narrative praxis may reveal the multivocal modes of (non)articulation with which people navigate advanced illness. Such listening to the unsaid or partially articulated therefore requires, as Shohet (2018) has recently noted, more rather than less attention to narrative and discourse, and, as she shows in this collection (Shohet, this collection), a careful navigation of our interlocutors’ stories within their unspoken and unspeakable historical contexts. In Amira's narrative, I hear the nutritionist's words as lingering in between the articulation and nonarticulation of dying, referring to its possibility but not giving it the “definite form” that characterizes the act of articulation (see Throop, 2010, 8). Her words draw on the painful memory of Ulfa's passing, and yet, like Nila's religious invocation, leave space for other interpretations, other imaginations of the future. The multivocality of such utterings is sustained by embodied signs of dying that, exceeding the possibilities of verbal articulation, communicate affectively, providing certainty only in retrospect. Reflecting uncertainty even though acknowledging the possibility of dying, the nutritionist's words complicate a rigid distinction between speaking and not speaking about dying at the end of life. The affective force of these utterings and their narrative reiteration in the story Amira told me, moreover, invoke dimensions of the social world beyond the interpersonal encounter. These include a long history of colonial and postcolonial violence, health-care hierarchies, and gender inequalities that contribute to figuring a powerful, if perhaps ephemeral, affective relationality amid a mother's fraught relation with biomedical silence/violence. While the nutritionist's spoken words, like Amira's, are not silent, attuned listening to such narrative acts may help us hear the unspoken futures and histories that permeate the possibilities of articulation. In such multivocal narrative interactions, silences may reverberate strongly. The ethnographic effort of writing with these moments within narratives, writing from the gaps and in the subjunctive mode rather than searching for narrative closure, may offer an opening for thinking with silent reverberations at the edges of narrative possibility. I am most grateful to “Amira” for sharing her story with me and trusting me to recount it in this essay. I thank Merav Shohet, Ana Dragojlovic and Julia Cassaniti for their thoughtful comments on previous versions of this essay and for the inspiring conversations that shaped this piece and the collection as a whole. For helpful comments on parts of this essay and Amira's story I am also thankful to Saiba Varma, Nicholas Harkness, Natashe Lemos Dekker and audiences of talks at the Anthropology Departments of the University of Zürich, the University of Vienna, Queen's University Belfast, and The Graduate Institute, Geneva. For research and writing I have received funding from the European Research Council (ERC) under the European Union's Horizon 2020 research and innovation programme (grant agreement No 707562 and No 851437), the Gratama-Stichting and Leiden University Fund, and the Dutch Research Council (NWO), grant no. 452-10-014.