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Dr. Teresa Casal is an Assistant Professor at University of Lisbon Centre for English Studies. Her main research areas areIrish Studies, Health Humanities, Narrative Medicine, Literary Translation, and Narrative Studies. With a PhD in Literary Studies (English Literature) earned in 2007, she studies the intersections of literature, health, and human experiences.

VISITATIONS

The consultant comes into the room with eight or nine others. We are so new to this, barely twenty-four hours new, we don’t yet know what this augurs. (…) Our son is a full-term baby of nine-days old, and we’re still hoping this is nothing serious, a little bug, a false alarm. (…) [W]ithout any preamble the consultant has started talking and the first words she’s said are, It’s not good news. (Caldwell, p. 155)

We read these words and worry. We hold our breath. We are with these new parents, “still hoping this is nothing serious”, then hearing “It’s not good news”. Whatever that means. The various degrees of “not good news”. The room for bargaining, now that “good news” is not an option. Is it a “not good news” that you can deal with, recover from, live with, or a “not good news” that crushes hope, perhaps even life? 

We worry and wonder. Like these parents, but at a remove. It is not our newborn child. Perhaps we don’t even have children. Perhaps we belong to the fortunate parents whose children are born healthy. Perhaps we worry with a secret sigh of relief that we are not faced with the materialisation of our worst fears. Or, if we have not been so lucky, perhaps our heart races with a pang of recognition, because we have been there and it is all coming back, the time when we worried for our child, partner, sibling, parent, friend, ourselves. 

And if we are young enough and lucky enough not to have been there, perhaps it is not lost upon us that, at some point in the inscrutable future, our best hopes may be crushed by our worst fears, and that this is not what is expected to happen to new parents, in the twenty-first century, in countries with low infant mortality rate. Indeed, this is not supposed to happen to parents of children of any age. It is not in line with the natural course of events. It feels unfair and unthinkable.

We worry because, regardless of our personal experience, we are brought emotionally and mentally close to these parents’ predicament: we appreciate its magnitude, whether out of recognition (we have been there) or fear (we haven’t but are reminded that we may). 

We worry because these parents’ experience is vividly brought before us: it is told in the present tense, in short sentences that make up fourteen short fragments, each a vignette told from the “endless present tense” (p. 160) in which the parents find themselves overwhelmed by their newborn’s life-threatening condition, by the “new vocabularies” (p. 157) of medical jargon, and the uncertain prognosis. Then, when their child falls into “the right fifty” percent (p. 166) and is discharged, relief is laced with fear (“It feels too soon to be going home”, p. 166) and with the heightened awareness of how little they control: “chance, luck, Alexander Fleming in 1928, nothing we’ve done (…) makes us fearful” (p. 166). This brush with death makes the parents viscerally aware of the power and limits of medicine, of their child’s and their own fundamental vulnerability.

No matter how skilful the telling, the story will have more or less impact upon us depending on whether we stay with it and how hospitable we are to it. Perhaps the topic is too sensitive and the timing wrong and we refuse to read on. If we read on and allow ourselves to be permeable to it, perhaps we react viscerally and cognitively. Perhaps we feel a sudden knot in the stomach, a tightness in the chest. Perhaps we allow ourselves to have an intimation of what it feels like to face what these parents are facing. For that to happen, we have to listen attentively to what is happening in the story and to what is happening to us as we read it, as argued by Craig Irvine and Rita Charon. The story will be alive to us if the raw vulnerability out of which it is told meets the vulnerability out of which we listen to it. For, as Arthur W. Frank reminds us in King Lear: Shakespeare’s Dark Consolations, the wounded storyteller requires the vulnerable reader (p. 3). Indeed, for communication to happen, the teller requires a listener. Admittedly the first listener of the story is the teller – writing from the heart of chaos may help organise that chaos, make it intelligible to oneself and communicable to others. Similarly, active listening involves reaching out to the other and inward to oneself, in a process of other and self-awareness.

Viscerally and cognitively “moved” as we may be by Caldwell’s story, at this point we don’t even know if it is fact or fiction. It is the eleventh story in Multitudes: Eleven Stories. We have been reading the ten previous stories as fiction. Yet, in an interview with Susanne Stich, Caldwell reveals that “Multitudes” draws on her first child’s life-threatening illness and explains that she wrote it “in bursts, when [her] son was 7-8 weeks old”. She adds that, “It felt utterly transgressive, to write something so closely autobiographical, and yet at the same time utterly necessary. It felt like writing for survival”. She notes how the fragmentary form, the “intense bursts, seemed to fit both the way it was composed, and the experience itself I was trying to evoke”.

As the fiction writer and memoirist Éilis Ní Dhuibhne Almqvist points out, “In the hands of a skilled writer, the memoirs of illness, or of grief and loss, use the techniques of the novelist.” There may be moments of loss, grief, and illness when fiction fails us, as it did Caldwell (p. 164), and the urge to tell one’s story and/or read others’ testimonies prevails. Conversely, there are also cases when fiction may prove enabling – to preserve our own and others’ privacy or when the experience is too inchoate and inarticulate for the telling and requires a change of perspective to be accessed. Writing about Nora Webster, his most autobiographical novel to date, Colm Tóibín explains how he first tried to write a novel about his father’s premature death from his point of view as a young child only to find out that his own memory was too filled with silence and he needed to tell it from his mother’s perspective instead. As Ferrante claims, “We fabricate fictions not so that the false will seem true but to tell the most unspeakable truth with absolute faithfulness through fiction.” (p. 67) The indirection of fiction may therefore provide a means of accessing otherwise “unspeakable truth”.^[1]

Whether fictional or autobiographical, literary and/or visual or performative, “[t]o know my own story, I need to encounter stories that are not mine.” (Frank, King Lear, p. 12) Indeed, when plunged into chaos and loss, others’ stories may perform two basic roles: provide the fundamental recognition that what we are going through is part of human experience, itself not a negligible source of consolation and reconnection; and show us that no matter how alien it feels, this experience is somehow communicable, even if in Caldwell’s “intense bursts”, in fragments out of chaos and uncertainty. Story-telling and sharing is therefore a form of connecting to oneself and to those who have undergone similar experiences, as happens in patients’ groups or online forums. Yet stories are also, crucially, a form of communicating with those who don’t have a first-hand knowledge of what we are going through and yet may acquire an intimation of what it feels like, such as family and friends, formal and informal carers, and policy-makers. Martha Hall’s artist books are a case in point: they were a means for her to process her own experience of living with cancer, and a mediating tool for her to communicate with her family and with her doctors, sharing aspects of her experience that would otherwise have remained inchoate and unshared. In addition, as explained in the documentary I Make Books and discussed by Stella Bolaki, Hall regarded her books as a legacy for future medical students.

As Richard Kearney claims, historically human beings have resorted to stories to explain ourselves, create a shareable world, and make experience memorable over time (p.3). Our need for stories in the context of health and illness speaks to the fact that, for all the scientific and technological knowledge, we remain embodied, subjective creatures, born at a given time, into a specific environment, and ignorant of what it feels like to be in somebody else’s shoes (or skin, as we say in Portuguese). Though, as Elizabeth McCracken notes in The Hero of This Book, “you can never know what it feels like to be in somebody else’s body”, nor can you know “what another person dwells upon” (p. 21), you can have intimations of it, as she did as an attentive witness to her mother’s life in a body with limited mobility due to cerebral palsy. Such intimations, and the attending appreciation of the full implications of her predicament, were what Martha Hall tried to convey to her doctors by way of her books – provided they were willing to look at them.

Originally, as noted by Havi Carel, phenomenological accounts of illness reacted against “naturalistic descriptions of illness [that] exclude the first-person experience and the changes to a person’s life that illness causes” (p. 8). However, many illness and bereavement narratives seek also to redress the popular pressure for what Frank calls “the restitution story” in The Wounded Storyteller and Conway refers to as the “story of triumph”, which “rings false” but “holds an attraction” (p. 17). Symptomatic of a cultural attitude that avoids facing suffering and death, it may go hand in hand with a tendency to stigmatise illness and blame the patient. Such a tacit cultural assumption is internalised by patients and providers alike and limits the scope of what can be told and shared in a given society. Stories that account for the many-layered experience of illness or bereavement, as well as stories of caring for the ill and the bereaved, are therefore enabling tools. Telling them in their complexity and diversity is important to raise the awareness of patients, providers, policy-makers, and society at large. Yet narratives do not emerge in a void, since we need others’ stories to be able to articulate our own, nor do they matter unless they find attentive listeners, capable of being hospitable in their receptiveness and active in their engagement. If we all need companion stories, as Frank argues in The Wounded Storyteller, in the context of healthcare persons facing life-changing or life-threatening conditions need illness and bereavement stories to help resituate themselves; providers need stories about what it feels like to be in patients’ skin, as well as stories about being healthcare providers, exposed to others’ suffering and having the responsibility of caring as best as they can for them; researchers benefit from insight into patients’ priorities so as to establish their own; and policy-makers benefit from patients’ and practitioners’ stories in order to assess what can be improved in the interest of providing better healthcare systems.

Whatever our role, we can learn about the hushed grief of stillbirth in Elizabeth McCracken’s An Exact Replica of a Figment of My Imagination. We can learn about the ordeal of failed IVF treatments and dented hopes, of premature births and queer mothering, and the loving “mundane intimacies” of “[b]eing responsible for someone else’s ear wax” in Claire Lynch’s Small: On Motherhoods (p. 215). We may wonder whether such intimacies feel as loving when caring for the elderly, namely for the increasing number of people diagnosed with dementia. We may learn from Wendy Mitchell about the manifold implications of being diagnosed with early onset Alzheimer’s in her fifties and how to live with it. We may learn from carers such as Sally Magnusson or Nicci Gerrard about the challenges of caring for parents with advanced dementia and the questions they faced because, as Magnusson notes, “understanding dementia from the inside really is the key to making the right practical and policy decisions for people who live with dementia” (p. 381). We may learn further about life with dementia from creative works that seek to bring home to us what it may feel like, such as Florian Zeller’s play The Father, and Julie Otsuka’s novel The Swimmers. We may learn about the fear and suffering censored in the triumph cancer narrative from Martha Hall’s artist books, Sarah Gabriel’s Eating Pomegranates: A Memoir of Mothers, Daughters and Genes, or Paul Kalanithi’s When Breath Becomes Air, among others. We may learn from Susanna Kaysen’s memoir, Girl, Interrupted, about her experience as a young person diagnosed with mental illness and the difficulty of articulating it, decades later. We will be faced with the issue of trust and the power that she raises, and with the generational and gender imbalance between doctor and patient. We will encounter such an imbalance again in Hilary Mantel’s Giving Up the Ghost: A Memoir, an account of how the dismissal of her complaints as a young woman led to the belated diagnosis of her endometriosis with devastating effects.

These and other works by or about “wounded storytellers” call for attentive readers, ready to engage with the multilayered import of these narratives, willing to strip themselves of their white coats or healthy coats and acknowledge, like Rafael Campo, that, “I am not a real doc without my white coat. / I could be anyone” (p. 56). Whether we are fellow patients, healthcare providers, informal carers, researchers, or policy-makers, understanding the experience of illness matters. It matters to try to understand patients’ priorities so as to target interventions to attend to them; to understand what can be done better to prevent illness, to prevent error, and care better for patients in their particular circumstances; to understand how to create environments where effective communication, collaboration and teamwork improve patients’ care and professionals’ self-care.

As wounded storytellers we aim to be listened to and have our predicament acknowledged. As vulnerable readers, we are willing to listen, to appreciate the import of what is being shared, to feel and think with it, and to act accordingly. In their coming together, teller and listener share the awareness that we are embodied creatures, vulnerable in our aliveness and our mortality, and interdependent in our need for care. This is our individual and also our common lot.

Works cited

• Bolaki, Stella. Illness as Many Narratives: Arts, Medicine and Culture. Edinburgh UP, 2016.
• Caldwell, Lucy. “Multitudes”, Multitudes: Eleven Stories. Faber and Faber, 2016, pp. 155-170.
• Campo, Rafael. Alternative Medicine. Duke UP, 2014.
• Carel, Havi. Illness. Acumen, 2008.
• Casal, Teresa. ‘“Imagining Myself Out of Myself’: The Uses of Narrative Fiction and Memoir in Health Humanities.” Global Perspectives on Probing Narratives in Healthcare, edited by Teresa Casal and Maria de Jesus Cabral, IGI Global, 2023, pp. 113-137.
• Conway, Kathlyn. Beyond Words: Illness and the Limits of Expression. University of New Mexico Press, 2007.
• Ferrante, Elena. In the Margins: On the Pleasures of Reading and Writing. Translated by Ann Goldstein. Europa Editions, 2022.
• Frank, Arthur W.. The Wounded Storyteller: Body, Illness and Ethics. 2^nd ed. University of Chicago Press, 2013.
• — . King Lear: Shakespeare’s Dark Consolations. OUP, 2022.
• Gabriel, Sarah. Eating Pomegranates: A Memoir of Mothers, Daughters and Genes. Vintage Books, 2010.
• Greenhalgh, Trisha and Brian Hurwitz (eds.). Narrative-Based Medicine: Dialogue and Discourse in Clinical Practice. BMJ Books, 1998.
• Gerrard, Nicci. What Dementia Tells Us about Love. Penguin Random House, 2020.
• I Make Books. Directed by Hollis Haywood and Kari Wagner. Interview with Martha A. Hall. Martha A. Hall Collection, Maine Women Writers Collection, Portland, ME: University of New England. https://research.kent.ac.uk/artistsbooks/videos/ Accessed 8 July 2023.
• Irvine, Craig, and Rita Charon. “Deliver Us from Certainty: Training for Narrative Ethics”. The Principles and Practice of Narrative Medicine, edited by Rita Charon et al. OUP, 2017, pp. 110-133.
• Kalanithi, Paul. When Breath Becomes Air. Vintage, 2016.
• Kaysen, Susanna. Girl, Interrupted. 1993. Virago, 2000.
• Kearney, Richard. On Stories. Routledge, 2004.
• Lynch, Claire. Small: On Motherhoods. Brazen, 2021.
• McCracken, Elizabeth. An Exact Replica of a Figment of My Imagination: A Memoir. Back Bray Books, 2008.
• — . The Hero of This Book. 2022. Jonathan Cape, 2023. 
• Magnusson, Sally. Where Memories Go: Why Dementia Changes Everything. Two Roads, 2014.
• Mantel, Hilary. Giving Up the Ghost: A Memoir. 2003. Fourth Estate, 2010.
• Mitchell, Wendy, with Anna Wharton. Somebody I Used to Know. Bloomsbury, 2018.
• — . What I Wish People Knew About Dementia. Bloomsbury, 2022.
• — . One Last Thing: How to Live with the End in Mind. Bloomsbury, 2023.
• Ní Dhuibhne Almquist, Éilís. “Reflections on Memoir as a New Genre.” Irish University Review, vol. 50, no. 1, spring/summer 2020, pp. 153-163.
• Otsuka, Julie. The Swimmers. Fig Tree, 2022.
• Stich, Susanne. “An Openness, an Outwardness: Lucy Caldwell’s Multitudes and the Possibilities of Fiction.” The Honest Ulsterman, Oct. 2016 – https://humag.Co/features/an-openness-an-outwardness. Accessed 8 July 2023.
• Tóibín, Colm. “The Literature of Grief.” The Guardian, 2 Oct. 2014. https://www.theguardian.com/books/2014/oct/02/colm-toibin-literature-of-grief Accessed 8 July 2023.
• Tóibín, Colm. Nora Webster. Penguin, 2014.
• Zeller, Florian. The Mother and The Father. Translated by Christopher Hampton. Faber and Faber, 2015.