A search of the broader, brain injury narrative literature suggests it to be an area dominated by personal accounts often biographical in origin (see Chapter 3 for more on neuro-narratives). In contrast published journal articles and papers are often single case studies or individual accounts, by people who are in medicine, or professions allied to medicine (who in some cases have themselves experienced neurological ill-health or brain injury). Generally however there is a lack of medical and academic literature by or about people with an acquired brain injury (Jones and Turkstra, 2011; Lorenz, 2010), and there is certainly a dearth of literature concerning encephalitis and people's experiences following this acute illness (Easton, 2012).
In a co-authored paper (both authors having been affected by neurological trauma or disease) Smith and Squire (2007) consider how mentoring, narrative inquiry and reflection have influenced their academic work. It is interesting to see two authors writing research papers explicitly documenting how their changing selves are influencing their narratives and their work, and how through the cyclical nature of reflection their narratives continue to change. In it Squire acknowledges that using narratives provides a new component to psychosocial research which facilitates people's experiences in being understood from more than one perspective. She does however go on to caution about the difficulties in getting this type of research accepted, because of a biomedical dominance in the field. The difficulty of narrative research being accepted as a process with intrinsic scientific value was also one alluded to by Kreiswirth (2000) and illustrated by Lorenz (2010: p. 163) who recounts a conversation with a director of research at a renowned rehabilitation hospital in the US. Lorenz asked if he had room on his staff for a qualitative researcher. He responded by saying qualitative research with brain injury survivors was pointless because: “you just keep hearing the same story over again”! Some authors suggest that the contributions of people with neuro-disabilities are not considered reliable, valuable or important (Cloute et al., 2008; Lorenz, 2010; Segal, 2010), whilst others caution that the temporal nature of narratives mean that some people question their “authenticity, integrity, and believability” (Shapiro, 2011: p. 68).
This book is written in response to the sceptics, and the lack of literature around brain injury survivor experiences, in particular those who have been affected by encephalitis. The book takes you on a journey that explores what encephalitis is and how people experience the consequences of the condition (Chapter 2); why people's stories of their experiences have been important throughout history and how they change over time (Chapter 3); survivor and family member experiences of encephalitis along with professional reflections on them (Chapters 4–7); the impact of people's stories on those who engage with them (Chapter 8); how professionals engage with patient narratives and how they might be used to improve practice and the patient experience (Chapter 9); and a short final chapter containing concluding remarks (Chapter 10). Each chapter that follows this one ends with a useful box of ‘Key Messages’ in order to provide at-a-glance insights for learning.
Although encephalitis is the condition of focus for this book it does not mean the content is only appropriate in relation to this condition to the exclusion of all others. Whilst the book will spend some time identifying and illustrating the unique attributes of this population, much of the commentary can be applied to those affected by other neurological illnesses and disabilities, in particular by acquired brain injury from other causes, be they illness or accident.
Although the emotional and social impacts of encephalitis and any subsequent brain injury might become more clear after survivors are discharged from hospital and thus beyond their relationships with the medical and therapeutic professionals who treat them, their experiences after treatment – and our understanding of them – are areas that remain poorly understood and rarely given space for discourse.
This book argues that it is important to witness people's narratives and stories, to understand their reasons for reading and writing them, and the impact they have for those who use them. For some, they may reflect a way of coming to terms with their experience of illness, while for others they may be renegotiating a new sense of identity following ill-health. Narratives might, at certain times and in certain contexts, offer a means of support and comfort. Others might not see them as helpful or relevant to their experience. It is hoped greater understanding of people's experiences following encephalitis will help in addressing the gaps around a condition and in an area of work that has received little attention to date.
To begin the journey the next chapter (Chapter 2) examines the nature of encephalitis and discusses its consequences for those affected and their families; it looks at experiences common to brain injury more broadly; and considers implications for people's narratives (for example its hidden nature and issues affecting identity); and concludes by discussing why the stories of survivors, and those indirectly affected, such as family members, are important.
References
- Cloute, K., Mitchell, A. and Yates, P. 2008. Traumatic brain injury and the construction of identity: a discursive approach. Neuropsychological Rehabilitation, 18, 651–670.
- Easton, A. 2012. The Role of Written Narratives in the Recovery of People Affected by Encephalitis. PhD, University of York.
- Jones, C. A. and Turkstra, L. S. 2011. Selling the story: narratives and charisma in adults with TBI. Brain Injury, 25, 844–857.
- Kreiswirth, M. 2000. Merely telling stories? Narrative and knowledge in the human sciences. Poetics Today, 21, 293–318.
- Lorenz, L. 2010. Brain Injury Survivors: Narratives of Rehabilitation and Healing, London, Lynne Rienner Publishers.
- Segal, D. 2010. Exploring the importance of identity following acquired brain injury: a review of the literature. International Journal of Child, Youth and Family Studies, 1, 293–314.
- Shapiro, J. 2011. Illness narratives: reliability, authenticity and the empathic witness. Medical Humanities, 37, 68–72.
- Smith, C. and Squire, F. 2007. Narrative perspectives: two reflections from a continuum of experience. Reflective Practice, 8, 375–386.
I was discharged home and had to believe that my husband was the right person, but I had no sense of certainty about him. Although I could not recognize our children I did have the belief that they were mine. I have memories of that time which are very frightening and upsetting. I had no sense of belonging to this family who I was told was mine. I remember feeling very frightened about the identity of my husband in particular and very separate from a unit of individuals who seemed so intense and confident together.
Encephalitis survivor: Rytina, 2007: pp. 18–19
Introduction
Encephalitis is a thief. In the same way that we have watched in recent months Ebola rob people of their lives and those they care about, encephalitis has quietly been at work for hundreds of years, robbing families of their loved ones, and even in those families where the person survives, it robs them of the person they once knew. Encephalitis steals survivors' capacity to remember as well as their personalities and the types of abilities we generally take for granted: memory, concentration, attention, thinking, judgement, inhibition. For many there are additional outcomes such as epilepsy and levels of fatigue so great that returning to work or education will remain elusive. This is, of course, where the person survives; many don't.
This chapter describes what encephalitis is; considers its global presence; and the outcomes for survivors and their families. We look in brief at diagnosis, treatment and management of the condition. In particular this chapter considers the psychosocial implications for people affected and issues around quality of life. As this chapter draws to a conclusion we will have begun to develop an understanding of encephalitis and why people's narratives may be important. In order to give this a broader context Chapter 3 will look in more detail at narratives and their role in medicine more generally.
What is encephalitis?
Encephalitis is a complex illness in its presentation, diagnosis, prognosis and long-term consequences (Solomon et al., 2012). Encephalitis is inflammation of the brain tissue and is a syndrome with hundreds of potential causes. It can occur at any age, in any part of the world and is caused either by infection, usually viral, or by autoimmune disease. It is useful to think about encephalitis as having two primary causes: infection and autoimmune malfunction. There are two primary sub-causes of autoimmune encephalitis (post-infectious and other non-post-infectious causes) and finally there is a fourth type where people are progressively ill and sadly, in many cases, die. These descriptions can be a little more understandable if you think of them as four sub-sets (see Table 2.1):
Damage to the brain is caused by the direct protagonist (for example an infection) and also by the resultant inflammation and swelling of the brain.
Infectious and autoimmune encephalitides can present in quite dramatically different ways. Table 2.2 illustrates the symptoms that might present in the two different types:
