Stories of dying and death enter digital spaces with narratives of illness. My research focuses on life-writing by those living with terminal cancer. The term life-writing denotes biographical and autobiographical writing, images, film and many other forms of constructing selves and narratives of lives (Lee, 2009; Smith & Watson, 2024). Over the last fifteen years there has been a transition from blogging to platformed life-writing. During this period a new amalgamation of autobiographical narrating around cancer and its treatments has entangled with digital illness and wellness narratives. Younger women have especially come to participate in digital cultures of illness whereby they create videos, images and text as Instagram-posts and stories, YouTube-videos and many other social media updates. These posts/narratives/fragments participate in affective and emotional production, which then circulates according to the platformed logic of what draws audiences. By the logics of the platformed digital life-writing culture I am referring to the current iteration of commercially operating platform-based social media, underlining the medium as a co-constructor in the narratives of selves and lives.(see for example Hearn & Banet-Weiser, 2020)
Grief appears online by way of illness narratives. In my postdoctoral research I have identified a substantial lack of knowledge about the grief of the dying in research, care and in culture at large (Joutseno 2024). Most often, grief has become synonymous with bereavement. Until recently, we have been tethered to beliefs that grief should be kept private and dealt with swiftly in five stages, so as to move on. This idea has been interpreted from and credited to Elisabeth Kübler-Ross’ research from the 1960s when she studied the grief of hospitalized terminal patients (On Death and Dying 1968). Kübler-Ross herself did not propose such prescriptive approaches to grief and although her research focused on the grief of the patients who were dying, theories referring to her are always about the bereaved. Over the last 50 years, the grief of those dying has remained peripheral.
I want to suggest that despite the objectionable reputation of digital platforms, they can (and have) become places where alternative narratives and interpretations circulate. So, while master narratives of cancer and illness are re-iterated online, the same platforms and same posts/accounts/identities can resist hegemonic and narrowing representations via counter-narratives. In the case of grief, digital life-writing practices have allowed for new autobiographical perspectives to be found by wide audiences. This impacts the kinds of narratives that become possible regarding illness, death and dying.[1]
Experiences of illness became the content of digital life-writing in the form of blogs pretty much as soon as blogging began. This followed on the heels of “a memoir boom”, an expansion of interest in the publication of narrated lives of the famous and the ordinary of all kinds (Rak 2013). According to Ann Jurecic, early 20th century silence around experiences of illness (such as the flu that killed more people than died in WWI) first began to evaporate as medicine developed and birthed the category of chronic illness (Jurecic 2012). Meanwhile theories and expressions of individuality and selfhood were also taking hold, and the questions of whose life stories are worth telling became central.
Whether illness is considered part of platformed “identity construction” (Poletti and Rak 2014) or as “narrative construction” (Meretoja 2018 and Meretoja & Freeman 2023), it can be depicted and made sense of online.[2] This happens in negotiation with the frameworks that we culturally associate with illness. Therefore, depictions of hospitals, treatments, and in relation to cancer, for example, hair loss are easily located within the “correct” framework. We have master narratives and visual cues that aid in constructing a narrative of an illness experience.
I am interested in something that appears to be largely missing from these frameworks: grief. In my research I ask,
a) Can the grief of the dying be marked and interpreted in these platformed expressions of living and dying of cancer?
b) How is this happening?
From my digital research material (which I will publish about next year), I have come to the preliminary conclusion that identifying and reading the grief of the dying on the platforms is possible. Yet, the lack of interpretive frameworks and shared cultures around expressing one’s own grief makes grief’s presence ghostly. Instead of being written and depicted explicitly, grief is usually between the lines, layered between what is being said and visualized. Grief is present through its absence. Perhaps it is also in the transmission between the narrator of their own life and the viewer/follower/reader. This appears crucial to thinking about grief in a digital context.
The platformed life-writing practices present in my research material display opportunities for addressing grief: a cancer narrative can be told from the hospital bed, during treatments, while living life’s final days in hospice care, or while enjoying life at home, on holiday, or from the moments of caring for others. The latter is pertinent for parents who are living with metastatic cancer and preparing to die, leaving their families and young children to go on without them. In these examples, life with incurable cancer can be ordinary and mundane, cause suffering, or it can be celebratory. Grief is present in multiple ways: alternating between explicit expressions of despair (for example, the hospital tapes of Dame Deborah James published on the podcast “You, Me and the Big C”) and the arranging of special moments with family to create memories (grief of the dying as motivation to live fully). The grief of the dying can also exist where there is no expression of it. For example, in the case of Nalie Agustin her continued underlining of hope in the face of death invites the grief of the follower: the lurker as witness grieves for the dimming light, the visual metamorphosis of the author ravaged by end-stage metastatic breast cancer and the unexpressed loss she is living through while publishing posts.
Finally, I believe it is insufficient to continue to operate under the premise that grief’s temporal orientation is solely towards the past. That we grieve after death loss and define this limit situation narrowly so that it cuts out forms of grief that have to do with living losses. Inspired by the reparative reading practice put forward by Eve Kosofsky Sedgwick (2003), I am developing a style of reading grief, which aspires to locate it in life-writing of many kinds (e.g., digital, literary, musical). I find that life-writing is a practice and a form that makes space for exploring the territories of grieving. With my work I wish to propose that recognizing and naming lived forms of grief has wide implications for culture and society.
[1] With identity construction digital life writing is viewed as means of constructing subjectivity. Narrative construction underlines the formative role of storytelling as a means to building and interpreting lives and selves.
[2] With identity construction digital life writing is viewed as means of constructing subjectivity. Narrative construction underlines the formative role of storytelling as a means to building and interpreting lives and selves.
Astrid Joutseno/Swan is a researcher in the Finnish Research Council project Counter-Narratives of Cancer (2023-2027), a Visiting Scholar of the University of Turku at Oxford Centre for Life-Writing (2024-2025), University of Oxford.
Agustin, Nalie. n/a. Instagram @nalieagustin. https://www.instagram.com/nalieagustin/?hl=en
----------2021. The Diary of Nalie. Self-published.
Hearn A. and Banet-Weiser S. 2020. “The Beguiling: Glamour in/as Platformed Cultural Production” in Social media + society, vol 6 (1), pp. https://doi.org/10.1177/20563051198987
James, Deborah. n/a. Instagram @bowelbabe. https://www.instagram.com/bowelbabe
----------2022. How to Live When You Could Be Dead. Penguin Books.
Joutseno, Astrid. 2024. “Grieving in the Everyday: Metastatic Cancer, Life Writing and the Grief of the Dying” in Narrative Medicine: Trauma and Ethics, Rasmussen & Sodemann (eds.) Wilmington: Vernon Press, pp. 27-36.
----------2021. Life Writing from Birth to Death: How M/others Know. Helsingin yliopisto. http://urn.fi/URN:ISBN:978-951-51-7459-8
Jurecic, Ann. 2013. Illness as Narrative. Pittsburgh: University of Pittsburgh Press.
Kübler-Ross, Elisabeth. 2013/1968. On Death and Dying. New York: Routledge.
Meretoja, Hanna. 2018. The Ethics of Storytelling: Narrative Hermeneutics, History and the Possible. Oxford: Oxford University Press.
Meretoja, Hanna & Freeman, Mark (eds.). 2023. The Use of Abuse of Stories: New Directions in Narrative Hermeneutics. Oxford: Oxford University Press.
Poletti, Anna & Rak, Julie (eds.). 2014. Identity Technologies: Constructing the Self Online. Wisconsin: University of Wisconsin Press.
Rak, Julie. 2013. Boom! Manufacturing Memoir for the Popular Market. Waterloo, Ontario: Wilfrid Laurier University Press.
Sedgwick, Eve. 2003. Touching Feeling: Affect, Pedagogy, Performativity. Durham: Duke University Press.