“Reading [Dostoyevsky's] novels should be the duty of all prospective epileptologists, in order to gain an intimate and subtile knowledge of the subjective side, of the inner world of epilepsy.”
Dieter Janz, How Proust can Improve your Practice of Epileptology
Over the past decade, the theoretical premises of narrative medicine have been effectively translated into specific programmes for different medical subspecialties. Megan Alcauskas and Rita Charon called for the introduction of narrative approaches in the treatment of neurological disorders in 2008: they claimed that neurology in particular could benefit from these strategies, because it heavily relies on the patient's history, notwithstanding the contribution of modern diagnostic technology. Epilepsy is a case in point, since it can be approached as a disorder that encompasses biomedical, social, and cultural discourses. Neurologists and family doctors know that successful treatment of epilepsy goes beyond seizure control—important as that is—and includes enabling patients to participate in, and be accepted by, society.
Despite advances in the treatment of epilepsy, the social and personal adjustment of patients to this disorder remains challenging on many fronts. Supplementing the approaches of epilepsy care with narrative-informed practices that are sensitised to the disorder's peculiarities, effects, and symbolic meanings, may valuably broaden the impact of traditional medical therapy. Many patients with epilepsy still find that the quality of their lives is affected by remnants of cultural taboos and fears about this disorder, which in the past was attributed to demonic possession or divine punishment. Negative reactions to witnessing sudden, unheralded loss of motor control, shaking and incontinence, and also to epilepsy's association with varying degrees of mental underdevelopment has resulted in epilepsy becoming a stigmatising disorder par excellence. Indeed, discrimination and prejudice towards people with epilepsy are still to be found worldwide.
Portrait of Fyodor Dostoyevsky (1872) by Vasili Grigorevich Perov
Various literary works have registered and explored the prejudices and superstitions that have been associated with epilepsy over the centuries. It is perhaps not surprising that cultural studies scholar Jeannette Stirling describes epilepsy as a stock narrative device, evocative of social or moral chaos. More recently, some writers have identified in epilepsy a vehicle for sharing experiences and creativity, and some of their texts can be profitably harnessed to engender greater narrative awareness of this disorder.
Valuable insights into the subjectivity of epilepsy are to be found, for example, in Fyodor Dostoyevsky's The Idiot, in which he imaginatively accommodates a personal view of the disorder in the complex character of Prince Myshkin, while acknowledging the constraints of social stigmatisation. Henri Gastaut's 1977 lecture on Dostoyevsky offers a fruitful cross-fertilisation of neurology, creative writing, and literary criticism: he claimed that only after reading literary scholar Jacques Catteau's work had he understood that Dostoyevsky may have suffered from primary generalised and not temporal lobe epilepsy. This revelation, together with a thorough reading of Dostoyevsky's novels, challenged Gastaut's notions of cognitive deterioration in primary generalised epilepsy and spurred his further work. Indeed, Gastaut offers an example of how written narratives and textual analysis may serve the advancement and practice of epileptology and neurology.
Charon coined the term narrative medicine to define medicine practised with narrative competence. Narrative skills, such as the capacity to hear, discern, absorb, and interpret stories, may enhance clinical expertise and offer doctors important evidence relating to the feelings and emotions surrounding the illness experience. Professionals' emotional involvement is no longer perceived as an impediment to their clinical acumen and reliability. On the contrary, recognition of such involvement is now encouraged as a way of improving clinical performance.
If the profound impact of neurological illnesses on patients' daily lives is often perceived as an insurmountable barrier to building a sincere, empathic clinician—patient relationship, analysis of literary and non-fiction texts and also creative writing may help to facilitate health professionals' appreciation of the feelings that accompany the onset and course of this illness. For example, experimental novels, such as Ray Robinson's Electricity—in which raw typographic and graphic devices are developed, elaborated, and played with in an effort to visualise seizures on the page—challenge traditional textual modes of processing information. Learning how to accept and interpret fragmentary narratives might prove particularly helpful for students of medical history taking. In this context, reflective and creative writing in medical curricula should also be encouraged. On the model of narrative oncology projects, medical students and other health professionals in epilepsy care could benefit from gathering together and reading to each other their own creative responses to clinical work—these practices foster collegiality and coping strategies to the emotional fallout of epilepsy practice.
Clinician—patient communication is a crucial factor in caring for patients with epilepsy and achieving satisfactory treatment adherence. Narrative competence in both fiction and non-fiction may be one tool that helps health practitioners to become aware of some of the diverse ways misunderstandings in communication originate and how to encourage patients' contributions to the discussion. Mismatches between patients' expectations or concerns and clinicians' knowledge and interpretation of their worries can negatively impact on the outcome of consultations. For example, The Spirit Catches You and You Fall Down, Anne Fadiman's memoir of western medicine confronting Hmong traditions, highlights the importance of these competencies in the treatment of epilepsy in a crosscultural context. Reading and discussing extracts from her memoir can alert physicians to broader issues, such as popular interpretations of treatments and various lay explanations of epilepsy that influence patients' and carers' treatment choices. Furthermore, a training in close reading and stylistic analysis might foster future clinicians' personal engagement with how clinical work intersects with different sorts of discourses to develop interpretive expertise. In this respect, some knowledge of more fine-grained levels of linguistic analysis, provided, for example, by conversation analysis and interactional sociolinguistics, may clarify how to identify, prevent, and repair common misunderstandings in clinician—patient interactions.
At the same time, supplementing epilepsy care with narrative-informed approaches can help patients and their carers make sense of the condition. In The Wounded Storyteller, medical sociologist Arthur Frank explains that patients' depersonalisation during illness and treatment affects their ability to tell their own story: full recovery thus entails the recovery of one's voice. This is particularly true for people with epilepsy, who frequently experience the appalling contradiction of not being aware of, or able to recount, their seizures: Lauren Slater's controversial memoir of living with epilepsy, Lying: A Metaphorical Memoir, addresses the inbuilt incommunicability of epilepsy and the difficulty of retrieving language adequate to the task of reconstructing what has happened.
Learning about real or fictional patients' experiences can be instructive, comforting, and destigmatising for patients, as well as for their family members, friends, and carers. Literature that deals with epilepsy can help to encourage patients' self-expression, particularly works written towards the end of the 20th century when the shift from the traditional victimisation of characters with epilepsy and towards some degree of empowerment takes place. Inspired by fictional or semi-fictional accounts of the disorder, patients can devise their own narrative tools to help them to come to terms with their illness. William Fiennes' The Music Room, for example, tells the story of his brother's experience of frontal lobe epilepsy, while surveying the most significant diagnostic and therapeutic achievements in the history of epileptology. Not only does this memoir address the behavioural aspects of epilepsy treatment, it explores the family dynamics engendered by a relation's chronic illness.
Stories can also maximise the impact of educational materials, since they are more engaging and memorable than general recommendations. A notable example is a German educational manga on epilepsy, Epilepsie?—Bleib cool! [Epilepsy?—Keep cool!]. Adolescents are seldom offered health-information materials tailored to their needs, but this booklet specifically targets teenagers by means of a comic style that they are familiar with. The story focuses on the effect of epilepsy on major aspects of teenage lifestyle, such as education, driving ability, alcohol consumption, relationships, sex, and contraception.
Narrative medicine in these various forms offers current epileptology a framework for appreciating the interdiscursive position of epilepsy as a medical, social, and symbolic phenomenon. A viable training in the skills of reading and discussing narratives about epilepsy may help health professionals to facilitate patients' agency in the management of their own disorder and to minimise patients' depersonalisation over the course of a long-term, stigmatising illness. The considerable corpus of literary works on the theme of epilepsy and the centrality of narration in the practice of neurology would seem to endorse this call for more narrative-based epileptology programmes of care.