I would like to thank Mona Baker, John Ødemark and the anonymous reviewers for their sensitive reading and helpful comments.
Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place. (Sontag, 1992, p. 3)
Often quoted yet largely undeciphered, Susan Sontag’s words reveal a new understanding of the nature and experience of illness.1 A fundamentally alienating condition, one that turns us into “strangers to ourselves” (Kristeva, 1991, p. 1), illness presents us with the foreign and the unfamiliar. In an attempt to cope with the feelings of exile and incomprehensibility elicited by this experience, we try to process it into something intelligible and tellable, that is, into discourse. This is why as patients we become foreign speakers of our own mother tongues, resisting standard language, and resorting to figurative speech, as disease confronts us with the challenges of inexpressibility (Scarry, 1985, p. 4).
Narrative medicine, an intellectual and clinical discipline systematized by physician and literary scholar Rita Charon in the early twenty-first century, has foregrounded the essentially narrative nature of the patient-provider encounter. Drawing on “a confluence of narrative studies and clinical practices”, this discipline aims to “fortify healthcare with the capacity to skillfully receive the accounts persons give of themselves—to recognize, absorb, interpret, and be moved by the stories of others” (Charon et al., 2016, p. 1).2 Even though translation is evoked both subtly and overtly in the two seminal volumes that mapped the field (Charon, 2006; Charon et al., 2016), insights from translation studies have been excluded altogether from this discipline’s theoretical and practical foundations. Similarly, recent developments in narrative medicine have emphasized the relevance of, and role played by, patients’ and providers’ linguistic and cultural backgrounds in the provision of narrative care (Marini, 2019; Ritivoi, 2023). Yet, despite these important developments, a systematic appraisal of translation as a fundamental principle of narrative medicine remains overdue.
This essay aims to invoke a translational turn in narrative medicine. My argument is grounded in two primary considerations: first, that illness is a fundamentally estranging experience resembling that of speaking a foreign language, and second, that discourses of and around health and disease have been dominated by narrative paradigms that have failed to capture the essentially translational (as in foreign and foreignizing) speech, or lack thereof, of those who suffer. Hence the need to turn to translation in order to better comprehend the alienating dimensions of illness. These estranging aspects become apparent not just in our difficulty, at times incapacity, to articulate suffering, describe our symptoms, and make sense of what is happening to and in our bodies and minds in the face of disease. A sense of alienation also surfaces in our interactions with health providers whenever the technical languages of medicine prove to be incomprehensible to us (Arnaldi, 2022a, p. 301).3 As a result, patients’ words are not simply texts, as narrative medicine posits. Crucially, they are foreign texts that can at times elicit, call for, and/or resist translation. My argument challenges the master plot of illness as narrative in favour of a disruptive idea of illness as translation as I contend here.
To support my hypothesis, I proceed as follows. First, I make a case for reimagining narrative medicine as translation by developing the idea that illness is essentially foreignizing. I then outline and discuss the features of narrative medicine’s translational design by analyzing an exemplary case of translational epistemology of health and disease avant la lettre: Margherita Guidacci’s Neurosuite (1999a). This is a collection of 80 poems recounting the poet-patient’s experience of incarceration in a psychiatric hospital, patterns of (un)communication with health providers, as well as the obscured, opaque forms of psychiatric knowledge brought about by suffering.
Poetry is indeed a privileged site for exploring the connection between illness and translation precisely because of its non-narrative and metaphorical use of language, as well as for its capacity to exploit ambiguity as a source of knowledge.4 In its deviation from standard linguistic and narrative codes, poetry inherently acts as foreignizing discourse. This understanding of poetry as alternative discourse is reminiscent of Julia Kristeva’s (1984) distinction, or rather tension, between the semiotic and symbolic order (p. 22). The semiotic is associated with a preverbal or averbal dimension (e.g., rhythms, tones, and metaphors), thus reflecting a lyrical and narrative-resistant mode of communication which for Kristeva corresponds to the feminine. Conversely, the symbolic associates with structured language and referential meaning, i.e., with syntax and grammar. From this perspective, poetry (the semiotic) and narrative (the symbolic) are different forms of storytelling as well as distinct genres. Indeed, there can be prose texts that challenge syntactical and grammatical rules, thereby adopting a poetic style that makes them lyrical. And vice versa, narrative poetry can make little if no use of metaphors, rhythm and metre, thus reflecting standard codes of expression. In this essay, I refer to poetry not simply as a genre but as a storytelling mode that allows us to better attend to the narrative-resistant discourse of those who suffer. Concepts from translation studies will help us decipher the opaque and meaning-resistant zones inherent in this form of communication.
Written by a woman in a non-anglophone language (Italian) and context (twentieth-century Italy), Neurosuite will shed light on the peripheries of narrative medicine, a discipline that, in addition to being dominated by a narratological reasoning that neglects “other modes of reflecting upon and representing experience” (Woods, 2011, p. 202), has remained largely Anglocentric (Wilson, 2023; Arnaldi & Forsdick, 2023). Analyzing these poems through the lens of translation studies will enable me to connect the poet-patient’s experience of illness with ideas of foreignization, against the triply non-normative background of Guidacci’s non-English, non-narrative, woman’s perspective. The chosen psychiatric context thus highlights a further element of marginalization and estrangement (Yakeley et al., 2014; Arnaldi, 2024). Additionally, it provides an ideal setting for discussing dynamics of narrativization, and lack thereof, in that consultation—a narrative-based process by definition—lies at the heart of psychiatric diagnosis and treatment.5
The experience of the foreign: Illness and translation6
The experience of illness encompasses several encounters with the foreign which, I argue, call for critical engagement with translation. Among these foreign encounters are the patient’s involvement with the alien and incomprehensible presence of the disease, the struggle to express such experience and symptoms verbally, and the unfamiliar language of medicine.
I use the concept of translation as a philosophy and an epistemology that enables us to better understand, express, and communicate (with) the foreign, rather than as a linguistic operation. This capacious vision of translation applies not just to logical and/or verbal communication but also to bodily language(s), omissions, silences, images, intuitions, perceptions, and glimpses; in other words, to the array of ‘languages’ verbalized or not verbalized by the diseased body. This implies that the diseased body communicates or expresses itself in various ways, some of which might not be verbal or traditionally recognized as language (as noted earlier, Kristeva defined them as “semiotic”).7 This multimedia, corporeal, and Other-oriented understanding of translation does not downplay but rather enlarges common definitions of translation as the semantic transfer between a word/concept in language A to a word/concept in language B. It is grounded in a solid historical tradition within translation studies and translation theory, one that started with the German Romantics (especially Friedrich Schleiermacher) and was further developed in the twentieth century by Walter Benjamin, George Steiner, and Lawrence Venuti, among others. This tradition, which foregrounded the idea that translation is a way of thinking about alterity as well as an instrument for communicating (with) it, is still relevant today, as demonstrated by its ecocritical and biosemiotic applications in contexts of human and non-human interaction (Cronin, 2017; Marais, 2019). For example, in addressing questions of animal communication, Michael Cronin (2017) highlights the essential role that translation can play as a fundamental framework for comprehending what other sentient beings express, thus pointing to novel, translational approaches to the science of animal communication (p. 71).
A historical discussion of the link between translation and alterity exceeds the scope of this essay.8 Here my aim is to pinpoint the key arguments that emerge from this line of enquiry and can help us consider illness and translation as comparable discourses on the basis of their engagement with the Other.9 The first is the idea that translation is the mode of alterity, one that, according to Walter Benjamin (1968), manifests itself not just in literal and/or unidiomatic renditions of an original text—“the interlingual version of the Scriptures [being] the prototype or ideal of all translation” (p. 81)—but also in a shift of focus from the familiar to the foreign, and from the target culture and its readers to the source and/or erased text. In contexts of healthcare, this shift is palpable on two levels: on the one hand, patients lose their sense of connection and familiarity with their own body and mind, thus feeling estranged; and, on the other hand, the providers strive to perform patient-centred acts of care. In this case, patients’ experience and speech can be seen as the original text whose features and authenticity should not get lost in translation. As we shall see, Guidacci’s poems document both of these aspects while also engaging with spiritual themes in ways that resonate with Benjamin’s mystical and metaphysical interpretation of translation.10
The second argument I would like to highight concerns George Steiner’s idea that translation is the mode of human communication, even when it is intralingual or monoglot (Arnaldi, 2022b, p. 6). In After Babel (1998), first published in 1975, Steiner postulates that
Translation is formally and pragmatically implicit in every act of communication, in the emission and reception of each and every mode of meaning, be it in the widest semiotic sense or in more specifically verbal exchanges. To understand is to decipher. To hear significance is to translate. (p. xii)
This statement invites us to rethink what constitutes communication, meaning-making, and perhaps even language. In the consultation room, patients and providers may find communication a challenge; even when they share a common language, a linguistic and cultural gap between them often arises—for example, when the specialist’s jargon remains incomprehensible to the patient. This difficulty is particularly problematic in psychiatry since, in this clinical context, “language“ can be a resource for treatment as well as a source of affliction (Tay, 2019, p. 1). As we shall see, Guidacci’s poems offer compelling examples of what we might call “the foreign language of medicine” even when uttered in monolingual settings which do not require interlingual translation.
The third and final argument relating to translation encapsulates the previous two. Lawrence Venuti defined as foreignization the strategy in which the uncanny and often disturbing existence of the Other is not lost, manipulated, and/or effaced in the transmission of texts, concepts, and/or experiences; domestication, the opposite of foreignization, refers to a type of translational vision and practice in which the original, foreign elements are concealed and/or eradicated in order to create a familiar experience for target audiences (Venuti, 1995; 1998). Venuti (1995) argues in favour of foreignization as a stronghold against “the violent, ethnocentric risks” of domesticising, especially in postcolonial settings (p. 20). He observes that “foreignizing translation is a dissident cultural practice, maintaining a refusal of the dominant by developing affiliations with marginal linguistic and cultural values in the receiving situation” (Venuti, 1995, p. 125), including those values that, emerging in the midst of suffering, are created in contexts of healthcare. By enabling and heralding “difference” (Derrida, 1982), foreignizing translation can be an ethical act that preserves the plurality of languages and cultures in which we are immersed. By extension, Venuti’s vision further asserts the superlingustic and Other-oriented nature of translation to suggest ways in which we can better attend to the marginalized voices of patients by complementing, rather than discarding, the specialist knowledge of providers. As Guidacci’s poems will reveal, patients’ lived experience offers alternative epistemologies—grounded in self-perception, intuition, and/or doubt—that, thanks to the significance of their subjective dimension, have much to contribute to the science of psychiatry. In this sense, concepts such as foreignization can be borrowed from translation studies to help advocate for a deeper involvement and consideration of patients’ voices, thus resisting forms of epistemic injustice (Kious et al., 2023; Drozdzowicz, 2021).11 Even though the provider’s and the patient’s goal is to suppress symptoms, this does not implicate the eradication and/or domestication of the patient’s (original) discourse, or lack thereof. In fact, the patient’s and provider’s joint efforts aim at a serious consideration and evaluation of it. Patient text (words, images, non-verbal cues and their absence) is what enables treatment, especially in psychiatry. From this angle, it is always more than a description of signs.12
I now turn to putting into practice the concept of the foreignness of illness by critically engaging with, and potentially reimagining, the disciplinary and methodological foundations of narrative medicine. What happens if we introduce values from translation studies when attending to, talking with, and learning from those who suffer?
Narrative medicine and/as translation
If illness, like translation, can be conceptualized as a foreignizing experience, then perspectives and tools from translation studies are arguably as well suited to the investigation of the expressive self (as Other) as perspectives drawn from narrative theory and narratology. This can be demonstrated in two main ways: by analyzing tropes of translation evoked in Charon’s and colleagues’ discussion of narrative medicine, and by reimagining narrative medicine’s principles in a translational fashion.
The writings of Charon and her colleagues are punctuated with images of translation, which are used to evoke patient-provider dialogue, collaborative healthcare, and patients’ speech figuratively. Yet, the essential contribution of translation as a strategic concept and practice to improving accuracy and justice within healthcare goes unmentioned, as if translation were just a metaphor and not a coherent vision. As my examination of Guidacci’s poems illustrates, foreignizing approaches from translation studies can prompt us to reconsider the provider-patient power structure. Such perspectives highlight the dangers of a ‘colonialist’ healthcare model, where the provider’s gaze dominates in a similar manner to the colonizer’s while the patient remains subjugated like a colonized subject. What is important to achieve, instead, is not for a nurse or a doctor to ‘read’ us, a process that suggests domination, but for us—the patients—to translate and co-author with them the story of our recovery.
For example, Charon and her colleagues (2016) describe the health professional as an interpreter and translator of patients’ ‘foreign’ speech. Thus,
It is as if I somehow become an interpreter between the patient’s body and self, those two entities that, in times of illness, cannot on their own communicate. They speak different languages. […] I see now […] that when I translate between the patient’s ‘self’ and ‘body’ I might function as an intermediary between them. (p. 279; emphasis in original)
Similarly,
If the professional listens […] for what the person says and also what the body says, he or she has the rare opportunity not only to hear the body out but also to translate the body’s news to the person who lives in it. (Charon, 2006, p. 99)
It is certainly true that the clinician mediates between the patient’s self and body, but a vision that does not bring to the fore the patient’s labour as translator of their own foreign tongues as well as of the different languages spoken by nurses, social workers, researchers, friends, family, and policy makers fails to capture the full picture. I would argue that this vision still privileges the knowledge and authority of the health provider over those of patients. By foregrounding the voices of the “translated” (Venuti, 1995), the concept of foreignizing translation can contribute to a more just and democratic epistemology of/in healthcare.
That Charon and her colleagues emphasize the provider’s perspective over the lived experience of patients (despite taking the latter as a point of departure) is also manifest in the prominence given to the medical profession. For example, Charon and colleagues present a compelling piece of student writing, drafted during a student’s Medicine rotation. Here, an argument for foreignizing translation can be convincingly made in view of the student’s portrayal of the physician as a “traveller” and the patient as a “refugee of sorts” (Charon et al., 2017, p. 250). Despite being united by the shared condition of being a foreigner, providers are positioned at the top of the hierarchy in that, being defined as travellers rather than exiles, they can return to a safe homeland—an opportunity not afforded to the refugee-patient. An excerpt of this student’s piece of writing discloses the provider’s dominant gaze over the patient-refugee:
My experience on the wards could be best described as a sort of cultural immersion. Like any traveller in a foreign land, I’ve felt an ever-present tension between the excitement of taking part in new experiences and the fear of revealing my otherness. [Also,] it is important to appreciate the patient’s status as a refugee of sorts, who finds himself in a foreign land with concerns far more pressing than assimilation. Perhaps greater efforts to actively inform patients of the physician’s role […] would help alleviate the consequences of this cross-cultural misunderstanding. (Charon et al., 2016, p. 250)
As evident in this passage, the student describes the linguistic and cultural divide between clinicians and patients as insurmountable.13 This disconnect arises from a tension: on the one hand, patients feel neglected because they expect a more significant physician presence “at the[ir] bedside”; on the other hand, the physician feels “under-appreciated for his efforts away from the bedside” (Charon et al., 2016, p. 250). The student aspires “to alleviate the consequences of this cross-cultural misunderstanding” by suggesting that “greater efforts” are needed to “actively inform patients of the physician’s role away from the bedside” (Charon et al., 2016, p. 250). As desirable and well-intentioned as this solution might be, it tends to serve the clinician’s needs more than the patient’s. Even though narrative medicine has raised awareness of the challenges and unhealthy work patterns of professionals in important ways, a more equitable interpretation of patient-provider expectations is required. By illuminating margins, the concept of foreignizing translation can support advocacy for justice by erasing hierarchies of power between doctors and patients, thus fostering patient-centred dialogue and interventions.
Overall, rich in translational imagery—from the clinician’s “cultural immersion” into the patient’s “foreign land” to “the fear of revealing [his] own otherness”—the student’s passage demonstrates that the concept of translation is indeed central to Charon and colleagues’ idea of narrative medicine. Yet, it remains a leitmotif or a trope that is not developed into a coherent vision.
Shifting the focus from themes and language to theory, similar issues can be raised in relation to narrative medicine’s foundational principles, also called the “five narrative features of medicine” (Charon, 2006, p. 39): temporality, singularity, causality/contingency, intersubjectivity, and ethicality. Here, even though the translational emerges as a theoretical tenet elsewhere, Charon’s critical discussion omits any mention of translation or of translation studies as essential and/or complementary contributors to the discipline’s conceptual foundations.
The first pillar of narrative medicine is time, a “necessary axis” in “diagnosis, prevention, palliation, or cure” (Charon, 2006, p. 44). According to Charon (2006), “we need time and continuity to understand what disease afflicts a patient, to let a disease declare itself”, and also to accept the fact that we will never govern it, no matter how skilled we become (p. 44). In particular, a typical way of experiencing time in illness is “an accentuated focus on the present, amidst a shrinking away of the past and the future”, both of which become alien to us (Svenaeus, 2000, p. 399). The present is the temporal dimension of illness—that is, a time in which we experience and respond to a crisis.
Homi Bhabha’s distinction between two forms of temporality—the pedagogical and the performative—might be used to suggest that such forms also correspond to two modes of existence in and knowledge of the world (Arnaldi et al., 2022, pp. 397–398). Whereas the pedagogical form of temporality refers to “a linear, ‘continuist [and] accumulative’ concept of time”, performative temporality “relies on a temporality that is liminal, ‘repetitious [and] recursive’” (Arnaldi et al., 2022, pp. 397–398). From this perspective, if “the pedagogical-diachronic form […] proposes a unified model of time that is heavily dependent on tradition and the past, […] the performative-synchronic form articulates the complexities of heterogeneity, cultural difference, and fragmentation” (Arnaldi et al., 2022, pp. 397–398). Patients inhabit the performative space associated with illness, the time of crisis through which they experience a fragmentation of the self, a state of urgency, as well as the anxiety and risks brought about by a plurality of outcomes and futures, some of which can be fatal. With its focus on plurality and regeneration (in the sense that being distinct from each other, the possible translations of a text can be virtually infinite), translation offers a conception of time, present-oriented and multiple, that can help us investigate the diverse and fragmented temporalities of the self in illness.
Similarly, the categories of causality and contingency can be reimagined and enriched with notions of opacity and incommensurability drawn from translation studies. Clinical practice, Charon (2006) points out, “is consumed with emplotment” to the point that “diagnosis itself is the effort to impose a plot onto seemingly disconnected events or states of affairs” (p. 50). The plots that “we encounter and create in medical practice”, moreover, can be “irrevocably about their endings”, that is to say that providers utilize these plots “to understand or to imagine the vectors of life, […] the inevitability of death, and the narrative connections among us all” (Charon, 2006, p. 51). Yet, I argue, stories of health and illness are not only or not much about endings; rather, they are about processes (Gardini, 2023), and processes indicate that a form of translation is taking place (Marais, 2019, p. 5).14
An understanding of translation as process can support a vision of health and disease as unstable and evolving conditions. As Kobus Marais (2019) persuasively put it, “‘translation-ness’, or the translationality of all the ‘inter’ and ‘trans’ process-phenomena” (p. 5)—from interpretation to transcreation and from intermediality to transformation—reveals the stages through which meaning is transformed into form and/or things, thus illuminating the processual nature of meaning making, which is essential, and often lost, in sickness.
Finally, as determinants of narrative medicine, singularity, and intersubjectivity can also be examined through a translational lens. Charon (2006) defines singularity as what “distinguishes narrative knowledge from universal or scientific knowledge”, that is as the “ability to capture the singular, irreplicable, or incommensurable” (p. 45). The illness text, she explains, “remains a zone of indeterminacy, of the pleasure of the new, the never seen” (Charon, 2006, p. 45). The focus on the narrative-I and its epistemic energy is then problematized in Charon’s discussion of intersubjectivity. Charon (2006) observes that literary scholars “probe the complexity that results when one human being engages with another in transmitting and receiving texts. Like medicine, narrative situations always join one human being with another” (pp. 51–52). In the intersubjective meetings that take place between the “relative strangers” who are patients and providers, complex texts are shared and co-produced; these texts “encompass words, silences, physical findings, pictures, measurements of substances in the body, and appearances” (Charon, 2006, pp. 54–55), thus revealing the translational/transmediatic nature of these dialogues. As the “science-art of relationality and alterity” (Arnaldi, 2022b, p. 2), translation provides tools that enable us to become “fluent in the language[s] of another”, “to give and receive simultaneously and ethically” (Charon, 2006, pp. 55, 60).
Towards a translational epistemology of health and illness: Margherita Guidacci’s Neurosuite
The 80 poems which constitute Margherita Guidacci’s Neurosuite (1999a) embody narrative medicine’s translational core on a number of levels, serving as a primary source of psychiatric knowledge. A prolific poet and translator, Guidacci is celebrated for her deeply spiritual verse as well as for her ability to master various poetic styles. Her work ranges from accessible and clear writing to cryptic lines that are reminiscent of the Italian Hermetic movement.15 Guidacci is also known for translating works from English, including John Donne’s sermons and Emily Dickinson’s poetry. Her writing is richly intertextual, incorporating references not only to authors in translation but also to key figures in Italian literature, particularly Dante.
Stemming from the mid-period of her career, Neurosuite explores Guidacci’s experience in a psychiatric institution, combining all of the elements discussed above, from spiritual themes to intertextuality, and from clarity of expression to laconic and mysterious lines.16 My aim here is to deepen the analysis of this poetry collection by extending its reading beyond religious themes and intertextual elements. Specifically, I will examine how translational thinking can help us better understand Guidacci’s experience and portrayal of psychiatric suffering. I will concentrate on selected excerpts from the collection, rather than on entire poems, using a thematic and argumentative approach instead of traditional textual analysis. This method will help me pinpoint clusters of translation and areas of translational epistemology as they appear throughout the collection, seeing them as part of a continuum rather than as isolated pieces.
To begin with, Guidacci’s Neurosuite17 deals with the ways in which illness can estrange the sufferer from themselves and others, thus revealing its foreignizing effects. Specifically, patients may feel alienated due to experiences of terror, nightmares, and monstrous visions encountered during hospital stays or moments of crisis. In addition to their impact on patients’ sense of self, these experiences can alter their perception of society and nature (primary and atmospheric elements are often described in altered form), producing imagery that borders on the planetary and interstellar. Table 1 outlines these dimensions of alienation that are associated with illness, beginning with a general sense of estrangement, progressing through monstrous visions, and culminating in altered reality.
Table 1. The foreignizing experience of illness in Guidacci’s Neurosuite
Dimension of alienation |
Examples |
|
Estrangement |
Io non sono il mio corpo. Mi è straniero, nemico. Ancora peggio è l’anima, e neppure con essa m’identifico. (“Madame X”, p. 190) |
I am not my body. It is foreign to me, my enemy. The soul is even worse, and I cannot identify myself with it, either. |
Io restavo sotto—non vi fu alcun segno della mia presenza fuorché il segno altrui su di me. (“Una storia ingloriosa”, p. 189) |
I remained underneath–there was no sign of my presence apart from the sign of an other on me. |
|
Guardano anch’essi il loro corpo con stupore e oppressione, sentendosi straniati da quella macchia biancastra nello specchio come se fosse una forma mai vista. (“Stupore e oppressione”, p. 189–190) |
They, too, look at their body with wonder and oppression, feeling estranged from that whitish spot reflected in the mirror as if it were a shape never seen. |
|
Terror |
In fondo ai loro occhi si accendono fiammelle di terrore. (“Sala d’attesa”, p. 173) |
At the bottom of their eyes flames of terror ignite themselves. |
Avvinghiati Minosse [il medico], cingiti con la coda. (“Accettazione”, p. 174) |
Twist Minos [the doctor], tie yourself with your tail. |
|
In un fruscio confuso si levano i nostri demoni. (“Iniezione serale”, p. 174) |
In a confused rustle our demons rise. |
|
Altered reality |
Neri brandelli di nubi strappate, erba dolente, frustata dal vento. (“Nero con movimento”, p. 171) |
Black shreds of torn clouds, Suffering grass, lashed by the wind. |
Ancor meglio essere nuvole, non legate a una forma […] e soprattutto senza dolore dissolversi. (“Stupore e oppressione”, p. 190) |
Being like the clouds is even better, without being bound to a form […] and especially without suffering dissolving. |
|
Il mondo è un’acqua dondolante dove calano lunghi riflessi, senza fondo. (“Insonnia”, p. 196) |
The world is swaying water where long reflections fall, bottomless. |
|
Diventeremo acqua anche noi. (“Variazioni su un tema d’acqua”, p. 198) |
We, too, will become water. |
|
Fissando il nostro pianeta lontano con il tuo rozzo telescopio. (“Al dottor Z”, p. 178) |
Staring at our distant planet with your rough telescope. |
|
[…] la Galassia dei tuoi globuli empirà mappe di consultazione. (“Un caso clinico”, p. 179) |
[…] the Galaxy of your cells will fill consultation maps. |
|
Vanno i pianeti silenziosamente lungo monotoni millenni: un giorno a un tratto si frantumano. (“Doveva esservi altro”, p. 191) |
Planets silently move along monotonous millennia: one day, all of a sudden, they crumble. |
|
Sai dirmi a che mondo appartieni? (“A che mondo”, p. 202) |
Can you tell me to which world you belong? |
It is interesting to note how living on the “planet of illness”, or as Sontag (1992) put it, “in the kingdom of the sick” (p. 3), can flatten our experience of time: “planets silently move”, Guidacci says, “along monotonous millennia” (p. 191). As is evident in the quotes from Guidacci in Table 1, the individual’s confinement to an inescapable present, monotonous and unreal, is a fundamental characteristic of disease. In this context, notions of time such as Bhabha’s idea of temporality as repetitious and recursive can help us better capture this halting of the temporal flux.
Similarly, ideas of untranslatability prove useful when dealing with the incommunicable aspects of suffering. Patients become translators of incomprehensible tongues, in my sense of inner translation as the form of translation which occurs when the poet-patient translates the doctor’s medical jargon into a comprehensible language (Arnaldi, 2022a, p. 301). These incomprehensible tongues include the languages of medicine, which contribute to creating the “diseased communication” that takes place in the asylum (Arnaldi, 2021, p. 17). To represent physicians’ foreign discourse, Guidacci’s poems draw on the idea of translation in various ways, as evident in the excerpts in Table 2:
Table 2. Translating the foreign language of medicine in Guidacci’s Neurosuite
Sono chiamati ed entrano e ricevono tutto il conforto che di là era in serbo: un nome greco per il loro male. (“Sala d’attesa”, p. 173–174) |
They are called and enter and receive all the comfort that was in store for them over there: A Greek name for their illness. |
Ci sezioni e ci pesi mentre i tuoi dizionari con i più dotti termini alimentano l’eloquenza ippocratica. (“Al dottor R”, p. 178) |
You dissect us and weigh us while your dictionaries with their most learned terms nourish a Hippocratic eloquence. |
Ci perdiamo nei tuoi simboli magici e lo stupore ce ne rivela il senso: come ci stia uccidendo il pungiglione che i tuoi diagrammi rappresentano. (“Al dottor R”, p. 178) |
We lose ourselves in your magical symbols and it is wonder that reveals their meaning to us: the way in which the sting represented by your diagrams is killing us. |
These passages explore the linguistic and cultural gap between patients and health providers (Kortmann, 2010, p. 203), thus calling for a translational reimagining of narrative medicine’s pillar of intersubjectivity. Given the nature of this gap, concepts and theories from translation studies may be more effective than narrative theory when analyzing patient-provider interaction. To borrow a sentence that Donna Haraway (1988) used with reference to feminism (another form of non-normative knowledge), narrative medicine “loves [indeed] another science: the sciences and politics of interpretation, translation, stuttering, and the partly understood” (p. 589).
Because of her ‘foreign status’ as an individual and a speaker, the patient is often compared to an exile. Neurosuite is punctuated with images of this kind, some of which describe Guidacci’s existential struggle in terms of pilgrimage, detention, and guesthood. This emphasis on outcasts and peripheries further supports the idea that illness is fundamentally foreignizing. After an electroconvulsive therapy session, which is described as an unknown “revolution”, the poet finds herself suffering the aftermath of a “long exile” (Guidacci, 1999a, p. 198). A similar sense of frailty and wandering emerges from passages populated by images of walls, chains, and cells, often accompanied by counter-images of doors, thresholds, and vast spaces; it is worth noting here that the word foreign derives from the Latin word foris, meaning “outside”. Table 3 features examples of the exilic imagery used by Guidacci to portray patients.
Table 3. Exilic imagery in Guidacci’s Neurosuite
Da che rivoluzione emergi? […] Forse ti hanno promesso ancora gloria Di là da un lungo esilio. (“Incoronazione – Elettrochoc”, p. 198) |
From which revolution are you emerging? […] Perhaps you have been promised glory still beyond a long exile. |
Questo nodo di pietra, questa città murata! La medesima ansia fa cercare una porta a chi è dentro, a chi è fuori. (“Città murata”, p. 171) |
This stony knot, this walled city! The same anxiety makes those inside and those outside look for a door. |
Girare sempre intorno tastando muri e sbarre […] sognando di smisurate vastità. (“Scelte”, p. 177) |
We keep going around touching walls and bars […] dreaming of a boundless vastness. |
Tu confini con l’aria […] E sei tu stessa la tua prigione che cammina. (“Prigione”, p. 205) |
You border with the air […] And you yourself are your own walking prison. |
[…] o pellegrino puoi domandarti tante cose ma una sola importa: è l’ultima casa dei vivi o la prima dei morti? (“Clinica neurologica”, p. 173) |
[…] pilgrim you can ask many things but there is only one that matters: is this the last house of the living or the first of the dead? |
The epistemic perspective offered by the exiled patient can be defined as translational because it originates in the experience of dwelling in an in-between zone suspended between the ill and the healthy, the dead and the living. This “transformational awareness comes from the [patient-migrant’s] ‘way of seeing’ […], one that is blurred and fragmentary as much as it is sharp, just like the image reflected by a ‘broken mirror’, or the vision of a reversed tower of Babel” (Arnaldi, 2022c, p. 211). This broken glass, or reversed world, is not merely a mirror of nostalgia; it is in fact a useful tool with which to work in the present, rebuild it, and see it with fresh eyes. As Donna Haraway (1988) observed, the divided self is capable of questioning established positions and assuming responsibility, as well as engaging in logical discussions and imaginative explorations that transform historical narratives; in this sense, “splitting, not being, is the privileged image for [translational] epistemologies of scientific knowledge” (p. 586).
Another translational manner in which the exilic patient gains knowledge is opacity. I borrow this term from Édouard Glissant, a Caribbean poet and philosopher of translation. In The Poetics of Relation (1997), Glissant claims that “opacities must be preserved” (p. 120); “opaque”, here, is not “the obscure, though it is possible for it to be so and be accepted as such”. Rather, it is “that which cannot be reduced, which is the most perennial guarantee of participation and confluence”, i.e., of relationality, translationality, and (epistemic) justice (Glissant, 1997, p. 191). He concludes by saying that “widespread consent to specific opacities is the most straightforward equivalent of nonbarbarism. We clamor for the right to opacity for everyone” (Glissant, 1997, p. 194).18
Here I use the term “opacity” in three main ways: (i) as a synonym for splitting, fragmentation, and loss (the opaque offers but a glimpse of the whole); (ii) as a form of untranslatability and epistemic obscurity; and (iii) as a form of unknowability that, far from being reduceable to (psychiatric) ignorance, supports epistemic wonder, tension, and doubt. Table 4 provides examples from Guidacci’s poetry to demonstrate each of the inflections proposed.
Table 4. Opacity as Episteme in Guidacci’s Neurosuite
Type of opacity |
Examples |
|
Fragmentation |
Tu non puoi ricomporre un disegno spezzato. (“Al dottor Y”, p. 179) |
You cannot recompose a broken drawing. |
[…] solo un piccolo strappo che nessuno ha saputo ricucire fa intravedere la verità. (“Arance”, p. 181) |
[…] only a little tear that nobody was able to mend allows us to glimpse the truth. |
|
Il nostro crollo non finiva mai. […] eravamo […] l’atto stesso del crollare. (“Crollo”, p. 208) |
Our fall never ended. […] we were […] the very act of falling. |
|
Obscurity |
[Dottore,] Sei all’oscuro di tutto come noi. (“Al dottor Y”, p. 179) |
[Doctor,] you are in the dark about everything, just like us. |
Solo il buio è quello ch’io vedo. (“Il cerchio deserto”, p. 205) |
I can only see darkness. |
|
Tutti i vostri strumenti hanno nomi bizzarri e difficili, ma io vedo chiaro. (“Non voglio’” p. 195) |
All your instruments have strange names, and difficult names, but I can see clearly. |
|
Siamo noi i guardiani del mondo: noi che vediamo trascorrere le ombre. (“Di notte”, p. 196) |
We are the guardians of the world: we who see the shadows passing. |
|
[…] in una danza elettrica, razzi sfrenati [vanno] nell’interna tenebra. (“Incoronazione – Elettrochoc”, p. 198) |
[…] in an electric dance, uncontrolled rockets [move] |
|
Almeno sia la notte di mia scelta! (“Accorgimenti contro la notte”, p. 197) |
May at least night be chosen! |
|
Unknowability |
M’impastano le dita della notte […] segno che tu non conosci e neppur io conosco (“Il segno”, p. 186) |
The fingers of the night knead me […] A sign of the fact that you do not know and that I do not know, either. |
Ma tu non sentisti la morte […] E dunque cosa conosci? (“Atlante”, p. 184) |
But you did not feel death […] Therefore what can you know? |
|
Sconfitto è il gnothi seautón […] Tagliati fuori dalla conoscenza solo dell’ignoranza ormai cerchiamo la chiave. |
The ‘know thyself’ has been defeated […] Cut out of knowledge we can only look for the key of ignorance. |
|
Il mondo è divenuto così opaco o siamo noi che non abbiamo più volto? (“Per noi nessuno specchio”, p. 189) |
The world has become so opaque or we do not have a face any longer? |
These examples reveal that a semantic continuum underpins the three types of opacity presented here, since aspects of each category are present in the others, thus making any attempt to draw a clearcut distinction between them unhelpful, if not impossible. At the same time, such categories can help us visualize the high levels of ambiguity with which Guidacci approaches ideas of epistemic clarity and darkness, on the one hand, and explores experiential and specialist knowledge, on the other. Notably, the poems suggest that both health providers and patients can be victims of acts of epistemic obscurity, and that only through a synergistic encounter between different types of knowledge can we achieve healing.
Standing neither with patients nor with providers, Guidacci embraces the paradoxical and complex thinking that is the domain of translation (Arnaldi et al., 2022, p. 397), thinking that promotes a shared and non-hierarchical model of epistemology. Here, not only are the situated and embodied knowledges of the many actors involved in the communication (patients, providers, friends and families, social workers, etc.) equally considered, but the incommunicable and the incomprehensible are also taken into account as forms of knowability. Epistemic opacity should at times be protected for the medically just project to succeed, and notions of (un)translatability can help us deal with the losses incurred through the lack of clear semantic content.
As evident from the examples discussed above, in Neurosuite poetry itself becomes a function of translation—that is, a language of difference capable of revealing the foreign connection between alienation and disease.19 The lyrical register expresses this phenomenon in several ways, not only by making use of metaphors and similes, but also by developing a poetics of error (in Latin, the noun “error” and the verb “to err” have the same etymological root); such a poetics supports ideas of deliberate obscurity, opacity, and deviance from epistemic norms. On the linguistic level, this is reflected, for example, in the frequency of words such as zigzag—“Like drunks, they guide us / in the zigzag that belongs to no-one” (come ubriachi ci guidano / nello zigzag che a nessuno appartiene) (Guidacci, 1999a, p. 191)—and “maybe” (forse). The latter emblematically provides the title of one of the poems—“Too many of our questions received only/one answer: ‘maybe’” (Troppe nostre domande ebbero solo/una risposta: ‘forse’) (Guidacci, 1999a, p. 188). On the thematic level, psychiatric illness is explored as nostalgia for a homeland – “Can you tell me to which world you belong?, ‘To Which World’” (sai dirmi a che mondo appartieni?”, ‘A che mondo’) (Guidacci, 1999a, p. 202)—or for a god—“Faith doubt disbelief / are the three knotted threads / that we cannot untangle, ‘Threads’” (la fede il dubbio l’incredulità / sono i tre fili annodati / che non riusciamo a districare, ‘Fili’) (Guidacci, 1999a, p. 191), thereby highlighting the translational connection between the experience of exile and that of disease. This reading enriches our current understanding of Guidacci’s poetry as “highly spiritual” (Wood, 2005) to underscore the fundamentally therapeutic dimension of faith as a form of healing, and the role of translation as a way of engaging with the Other by definition, that is, God.
Conclusions: In praise of epistemic darkness
By developing the intuition that illness is a foreignizing experience, I have suggested that certain insights and concepts from translation studies can be deployed to study non-narrative accounts of illness, given two facts: first, that translation is by definition the “science-art” of being/becoming an Other, and second that illness narratives more often than not defy ideas of narrativity, meaning making, readership, authorship, and plot. With its non-normative use of language, poetry helps us better understand stories of illness by uncovering their translational dimensions, as the analysis of Guidacci’s Neurosuite movingly reveals. Taken as a body of work, Guidacci’s poems offer a synthesis of the many ways in which a translational turn in narrative medicine may bring into focus and under the same lens the very values that inform the discipline, from its focus on ethics to its patient-oriented vision of healing. The poems function as a site of lyrical perception and epistemic disruption by documenting a type of non-narrative, poetic knowledge produced by, and for the benefit of, the margins of the healthcare system. Concurrently, these poems disclose how translation is inherently a self-critical concept and practice that invites us to question our beliefs and values, including the assumption that translating is always beneficial and harmless. As the analysis presented here has demonstrated, there are times when we are called upon to preserve the incommunicable and the untranslatable as ethical and just forms of knowledge, especially in contexts of psychiatric suffering.
Guidacci’s poetry took us “to the centre of the night” (nel centro della notte) (Guidacci, 1999b, p. 175). It pointed to some of the ways in which a translational epistemology—one that privileges non-linear, non-hierarchical, complex, and multivocal possibilities of knowledge—can contribute to more equitable theories and practices of narrative medicine, even (and especially) when the task of understanding and treating those who suffer seems almost impossible to accomplish. As a medium for understanding non-narrative accounts of illness, translation accounts for the ‘black holes’ into which psychiatric knowledge may fall, not to celebrate ignorance nor to incite resignation, but rather to accommodate different forms of storytelling and modes of knowledge, including those produced, or failing to be created, in the midst of suffering.
I have invoked a translational turn in narrative medicine, not with the intention to challenge or reinvent narrativity as an episteme, a genre, and a concept, but rather in the hope of foregrounding narrative medicine’s essential, translational nature that encompasses all of the above. I believe that concepts from translation studies and the languages of poetry should be systematically incorporated in narrative medicine, its theory and practice, and I aspire for this article to contribute towards achieving this critical integration.
Dov’è l’oscurità
di cui tanto piangevi? Sei tutta illuminata (Guidacci, 1999b, p. 214)
Where is it the obscurity
that caused your great weeping? You are fully illuminated.