Master’s Thesis
Medical Anthropology and Sociology Graduate
School of Social Science
The lived experience of Dutch adolescents with acquired brain injury
Linda Sierkstra Email:lsierkstra@gmail.com
Student number: 10722343 Word count: 21868 Supervisor: Ria Reis Second Reader: Kristine KrauseAmsterdam July 11, 2018
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Acknowledgements
The past few months have been a tremendous experience, which would not have been the same without the help of so many people around me. First, I would like to thank my cousin, for being a wonderful young man; you accept my interest in your personal experiences with your acquired brain injury, despite your sometimes-noticeable annoyance with me. Your critical remarks and reactions always keep me reflexive and sensitive, and have often put me in my place.
A big thank you to all the participants of this research. Your insightful answers, willingness to participate and openness about your personal experiences, are what made this thesis possible. Thank you, Lisette and Jeremy, for taking me with you on so many occasions and making time in your schedules to show me what your lives look like. And thank you for opening up to me. A special thank you to Miriam, you have opened many doors for me to do my research and contact participants. Your work on grief and the participants you put me in contact with have provided me with insights that have been invaluable for my argument. Next, I would like to give attention to all the people from the University of Amsterdam who have supported me. Firstly, a big thank you to Ria, my supervisor. The discussions we had have always been inspiring and critical. Your compliments on my work have given me confidence and have kept me enthusiastic throughout the fieldwork period and the thesis writing period. To Callum, our over coffee discussions have been wonderful. To my classmates, thank you for the mutual support and positive involvement we have had in each other’s personal and academic wellbeing. This year has been wonderful and that is also greatly because of you. The same goes for my professors. The Medical Anthropology and Sociology staff is immensely open and supportive. Your positive support and guidance during this academic year have taught me a great deal. Lastly a shout out to my friends and family. Your interest in my work and willingness to read it and provide it with feedback have always been helpful. Maaike; my unfailing cheerleader, Sjors; my always present editor, Mom, Dad, Roel, Tanja, I cannot thank you enough for all of your help!
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Abstract
This thesis is part of the master program Medical Anthropology and Sociology at the University of Amsterdam. It is a descriptive work that focusses on lived experiences of Dutch adolescents with acquired brain injury (ABI). Adolescents with ABI are often grouped together with either adult or paediatric populations. There is not a lot of specialised care for adolescents with ABI, nor are their experiences given a lot of attention in the social science and medical literature. Despite that, on an annual basis, 300 out of 100.000 adolescents in the Netherlands suffer an ABI, and despite that adolescence is considered to be a unique developmental stage, which constitutes specific needs. This thesis is an attempt to start exploring the lived experiences of Dutch adolescents with ABI. It is based on two months of anthropological research, in which two adolescents, and one health-care professional, were joined in their daily lives, for participant observations, and 15 adolescents, and two health-care professionals were interviewed. In this thesis, the lived experiences of adolescents with ABI are considered concerning three, theoretically distinct, fields of their lives; their experience of their sense of self, their bodies, and their surroundings. Within these three fields of their lives the changes caused by the ABI are considered: what are the losses and gains they experience and how do they appraise these? Throughout these fields, the results of this research have shown that Dutch adolescents with ABI express ambiguous feelings about their illness experiences. On the one hand, they express positive attitudes about personal gains and a sense of accomplishment. On the other hand, they express negative attitudes towards all they cannot do anymore.
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Table of contents
Acknowledgements 1 Abstract 2 1. Introduction 4 1.1. Background 51.2. Problem statement 6
2. Theoretical framework 7 2.1. Conceptualising ambiguity 7
2.2. Ambiguity in the sense of self 9
2.3. Ambiguity in the body 11
2.4. Ambiguity in the surroundings 12
2.5. Concluding remarks 14
3. objectives 14 4. Methods 14 4.1. Getting acquainted with the field 15
4.2. Semi-structured interviews 16
4.3. Finding participants 18
4.4. Data handling and analysis 18
4.5. Reflexivity 19
5. Ambiguity in the sense of self 20 5.1. Biographical disruption or flow? 21
5.2. Narrative strategies 22
5.2. Ambiguous appraisals 25
5.2.1. Appreciation of life 25
5.2.3. Ideas about oneself 27
6. Ambiguity in the body 29 6.1. The body they are 30
6.2. The body through which they experience 33
6.3. The body they have 35
7. Ambiguity towards the surrounding 38 7.1. Entering the health care system 38
7.2. Jobs and educations 40
7.3. Family and friends 44
8. Discussion and conclusion 47 Literature 50
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1. Introduction
That day I came home from school late, it was around five p.m. when I hung my coat on the hanger and walked into the kitchen. While I walked through the kitchen into the living room I loudly yelled ‘Hello!’, as I always did. I glanced into the extra room we used as an office, but no one was there. Normally my mom would be either behind the computer, playing a card game, or she would be in the kitchen with my dad, drinking their ‘after work beer’. But today the computer was not even on. There were used coffee mugs on the dinner table, next to one of them lay the phone. On the kitchen counter, someone left their dirty plates. As I walked towards the living room I heard someone coming down the stairs, from the rhythm of the steps I could tell it was my younger sister. I walked towards the telly and grabbed the remote. As I sat down my sister entered the living room. I said ‘Hi sis! Had a good day?’. A bit startled she looked at me and asked ‘Has anyone told you yet?’ No one told me anything so I looked at her and shrugged. She continued ‘Roan has had an accident with his moped, he is in the hospital’. It was not uncommon for my cousins to get themselves into trouble, it still isn’t. Not sensing the severity of the situation, I chuckled, shrugged again and asked ‘And what? He broke his leg? Jeez those guys.’ After a short silence, my sister replied ‘I don’t know, maybe, amongst other things. He is in the VU.’ Another long silence. ‘He is in a coma, i- it’s pretty bad.’ We looked at each other for a while, I turned my head to look away, not knowing what to say. After a few seconds, I dared to ask ‘But he’ll be out in a few days, right?’ It was my sister who shrugged this time ‘They don’t know, but it’s doesn’t look good.’ Back when I was studying to be a florist, my cousin, then 16 years old, was involved in a traffic accident. He suffered severe head trauma, which left him with acquired brain injury (ABI). He ended up in a coma, and when he woke up, six weeks later, he was barely able to breathe on his own, let alone eat, walk, move or speak. He had to recover from severe cognitive and physical impairments. During his first year of rehabilitating I started studying anthropology. During that year he recovered tremendously, yet it became clear that he had also changed. This led me to think about identity change after an ABI, and how my cousin might think about this himself. At the end of that year I realized that the topics I struggled with concerning my cousin’s recovery, were things I could research from an anthropological perspective.After my first literature studies on the subject of ABI I discovered there was a lack of knowledge considering the experiences of adolescents. Especially from a social science perspective there were still a lot of questions unasked. I dove into medical sociology and anthropology literature, disability studies and feminist theories about health, sickness, and care relationships. I read and got inspired by
5 literature about biographical disruptions (Bury 1984), narrative reconstructions (Williams 1982) and therapeutic emplotment (Mattingly 1994). In the literature, there seemed to be a focus on the disruptive and confusing effects of acquiring a disabling chronic illness. These resonated with how I, as a close relative, had experienced the changes my cousin had undergone.
In the third year of my bachelor I finally had the chance to interview my cousin for an assignment. For this interview, I was inspired by theories about biographical disruption and narrative reconstructions. I wanted to know how my cousin’s sense of self had been influenced by his experiences. Packed with these social science theories I started interviewing him. But, from the get go, I noticed how the questions I asked did not seem to resonate with his ideas. My ideas about a biographical disruption, about his identity being changed, and the struggle he might have with this, were discarded by him. These theories that were so influential, in the work of so many social scientists, did not seem to hold up for his life experiences. My cousin said he did not feel like a different person, that he felt like he had changed, but not to the extent that his actual identity changed. I felt there was a gap between the lived experience of adolescents with ABI and the social science theories that had inspired me. But how can we begin to understand the lived experience of adolescents with ABI? I decided I had to begin with understanding it from their point of view. Leaving room for their interpretations during the research process. This thesis has therefore become a very descriptive one. During the research I found that, much like my cousin, the adolescents I spoke with rarely described their lives as solely sadness and strive. As we will see, they often sketched a nuanced view in which positive and negative sides of their experiences are weighed against each other.
1.1. Background
An ABI is brain damage that occurs later in life. It can be caused by external factors, such as head trauma, or by internal factors, such as a stroke.1 It is a leading cause of mortality and disability among adolescents (aged 15-24) in high-income countries (Finfer & Cohen 2001: 77, de Kloet et al. 2013: 843). De Kloet et al. estimate that on an annual basis 300 out of 100.000 adolescents in the Netherlands suffer an ABI (2013: 846). Severity and location of the impact, the time spent in a coma, the quality of the care received and personal characteristics all influence the permanent outcome of the injury. The disabilities caused by ABI can differ greatly, from minor concentration disorders to complete dependency (Middleton 2006: 61). Due to their hospitalization and rehabilitation adolescents with ABI 1 Often a distinction is made between traumatic and non-traumatic brain injury. Traumatic brain injury is caused by external factors, such as a head trauma, non-traumatic brain injury is caused by internal factors, such as a stroke. I do not make this distinction, and choose to refer to ABI in general, as the long-term effects can be the same (Middleton 2006). Not making this distinction has also made it possible to include more participants in this research.6 miss out on school and time with friends. Their personality or cognitive and physical abilities might have changed so much that previous education, jobs and networks no longer fit them (Gauvin-Lepage & Lefebvre 2010). When writing about adolescence it is important to consider what it is that we are talking about. Adolescence is the period in an individual’s life in which (s)he transitions from childhood to adulthood (Blakemore 2008: 267; Curtis 2015: 1; Sharp et al. 2005: 768; Steinberg 2014: 9). ‘“Adolescence” is a dynamically evolving theoretical construct informed through physiologic, psychosocial, temporal and cultural lenses’ (Curtis 2015: 1). This implies is that ‘adolescence’ can be defined in different ways. The lens one chooses to apply influences the age range we wish to discuss, and what it is that we consider adolescence to be. It may include ages ranging from 9 till 26 (ibid.). Furthermore, there are cultural as well as biological definitions of adolescence. The maturation of the brain and body are given meaning in the sociocultural context of the individual. The meaning that is ascribed to this process can vary in different cultural, historical and social contexts (ibid.: 2). For the purpose of this research project I considered adolescence as a category of 18 till 25 year olds. This subcategory is interesting because of the expected roles these individuals are to fulfil in Dutch society. This age category is widely considered the age of maturity, in which individuals become more socially and economically independent. It is a developmental phase in which individuals often do not yet have great responsibilities. In this sense, it is also a phase that often entails a lot of freedom in the choices one makes (ibid.: 19-24). An ABI can interfere with this new freedom and autonomy, interrupting the biological and sociocultural development and expectations of these individuals (Gagnon et al. 2017: 161, Swaine et al. 2008: 581).
1.2. Problem statement
According to several authors adolescence is considered to be a unique developmental stage, which constitutes specific needs (Blakemore 2008; Curtis 2015; Gagnon et al. 2017; Swaine et al. 2008). Yet in healthcare, in disability studies and in anthropology and sociology, there seems to be a gap in the knowledge regarding the lived experience of adolescents with ABI (de Kloet et al. 2013; Swaine et al. 2008). This gap in the knowledge is puzzling for several reasons. Firstly, ABI is one of the leading causes of disability in adolescents in high-income countries (Finfer & Cohen 2001; de Kloet et al. 2013; Sharp et al. 2005). Secondly, the experience of living with a disability is different for people living with ABI than the experience of people who have lived with a disability all their lives. Thirdly, adolescence is widely considered a unique developmental phase. This leads me to conclude that more insight is needed to better understand the lives of adolescents living with ABI.7 When people are struck with a chronic condition, as an ABI in many cases is, they might have to reconsider several of aspects of their lives. According to several authors the effects of a chronic illness can influence how we think and feel about ourselves. It can influence our identity, or sense of self in a profound way (Carroll & Croetzer 2001; Collings 2008; Lawton 2003; Nochi 1997; 1998; Van Bost et al. 2005; Yeates et al. 2008). Due to the physical impairments of the ABI, self-evident ways in which individuals with ABI used to use their bodies might have to be reconsidered. Furthermore, due to these impairments the social surroundings may change (Sharp et al. 2005; Bedell et al. 2004). Adolescents with ABI might be faced with increased dependence on others, at a time when they are supposed to become more independent (Sharp et al.: 768). Research has been done on the incidence rates of ABI with adolescents in the Netherlands by de Kloet et al. (2013). They concluded that the estimated occurrence of ABI in children and youth in the Netherlands is substantial. Therefore, they find it puzzling that there is no previous research done on the occurrence of ABI specifically in youth (14-25). Swaine et al. (2008) and Gagnon et al. (2017) have researched the needs of adolescents with ABI from a health-care perspective. Their conclusions were that more insight was needed in the specific needs of these adolescents. Both the health-care professionals and the adolescents experienced a lack of knowledge concerning the needs of adolescents with ABI. Extensive research has been done by Nochi on the narrative reconstructions of people with ABI (Nochi 1997; 1998; 2001). Others have argued for a more nuanced view on ideas about identity change after an ABI. They claim that there is more stability in the sense of self than is often sketched in social sciences (Gelech & Desjardins 2011; Medved & Brockmeier 2008). Yet what misses in the literature is research on the lived experience of adolescents with ABI. As this is an attempt to fill in that gap in the literature, I have deliberately kept my research questions and theoretical perspective broad and open. This research will be descriptive of nature. In it I will try to grasp what the main issues are for the participants I have interviewed, leaving room for their own interpretations and explanations.
2. Theoretical framework
2.1. Conceptualising ambiguity
An ABI is a chronic condition caused by brain damage that occurs later in life. The effects of an ABI can be far reaching; social, cognitive, emotional and physical abilities can be impaired in different ways. The ways these impairments are experienced by the individual him- or herself can differ. Socio-cultural understandings of the illness and personal characteristics of the individual can make the individual illness experience one that is hard to make generalising claims about (Faircloth et al 2004: 244).
8 Authors argue for the complex experiences and the ambiguity of living with ABI, both negative and positive effects of the ABI are mentioned (Faircloth et al. 2004; Gelech & Desjardins 2011; McGrath & Linley 2006; Medved & Brockmeier 2008). It is ‘one of the most profound life events a person can experience, resulting for many in significant changes’ (Caroll and Coetzer 2011: 191). After an ABI people’s lives can undergo change, the extent of this change can be greater or smaller in accordance with the effect of the ABI. Certain capabilities in physical or cognitive functioning may change, and these changes causes having to reconsider ideas and expectations about oneself. People have to come to terms with these changes and losses (ibid.). The type of loss that might be experienced by adolescents with ABI, is ambiguous loss. The difficulty with this type of loss is that the physical person is still there, yet part of the personality is absent or has changed (ibid.: 138). This poses a problem because there is no space for closure or grief (ibid.: 140). This results in conflicting emotions, one feels joy for the continuing of life, yet also feels sadness for the part that has been lost (ibid.: 143). This type of loss is considered by some to be the most difficult of all losses (Boss 2010). Boss calls ABI one of the ‘catastrophic examples’ of ambiguous loss (ibid.: 140).
Although I do not dismiss the profound effect these losses can have on individuals, I also believe that within the ambiguity of ambiguous loss there is space for another appraisal of the challenging experience of living with ABI. It is argued by numerous authors that individuals who live through a traumatic event undergo positive change (Hefferon et al.: 2009; McGrath & Linley 2006; Powell et al.: 2007). This positive change is conceptualised in psychology as post traumatic growth (PTG). In their review article Hefferon and colleagues (2009) found that people who lived with a chronic illness expressed different kinds of PTG. Often, they revaluated their priorities in life and saw new opportunities. Their appraisal of social relationships changed as well, it is mentioned in the literature that people report stronger, deeper relationships. Furthermore, ideas about themselves changed, participants expressed that profound life lessons, learned during the illness experience, had made them stronger (2009: 371). Their changed outlook also influenced their ideas about their bodies; participants were more aware and took better care of their bodies (ibid.: 372). Throughout all the literature they found that participants reported a new and deeper sense of meaning in their lives (Barskova & Oesterreich 2009; Hefferon et al.: 2009). As McGrath and Linley state, PTG is different from coping and resilience, as it entails ‘incremental psychological change’ (2006: 767). As is shown in the literature PTG is noticeable in all aspects of life, personal, emotional, relational and in ideas about and experiencing the body. In the PTG literature reviewed the participants were adults who suffered from different chronic illnesses. One might wonder whether or not PTG would be experienced by adolescents in the same way. Taku and McDiarmid have researched the relevance of PTG for adolescents (2015). They state
9 that for this age category the experience of overcoming challenging events can have positive effects on personal growth (ibid.: 224). They further argue that the PTG experience of adolescents might be different than that of adults, as adolescents have different life goals and perceptions (ibid.). One of the examples they give is that adolescents rated the question about ‘personal strength’ as highly important. Taku and McDiarmid argue that this might be due to their age and expected role in society to develop into more autonomous individuals (ibid.: 228).
Considering PTG when writing about ABI asks for reflexivity about particular effects of an ABI that might influence the relevance of PTG. In their article on the relevance of PTG for people living with ABI, McGrath and Linley state that impaired cognitive functioning might cause difficulties, as people with ABI might be less capable of self-reflection, which is necessary to be able to identify PTG. Furthermore, supportive social surroundings have proven to be a great beneficial factor for PTG; relational difficulties due to an ABI might therefore interfere with PTG. Yet in their results it is shown that PTG was highly relevant for their participants, PTG strongly resonated with their experiences (ibid.: 771). As I will show in the following sections, in my research this notion of post-traumatic growth can be relevant in several aspects of the lives of adolescents with ABI.
2.2. Ambiguity in the sense of self
The common idea in the West is that an individual’s personality resides in the brain, thus neurological pathologies are considered to have a profound effect on one’s identity (Gelech & Desjardins 2011: 64). Because an ABI damages the brain the idea is that actual personality change occurs (Medved & Brockmeier 2008: 470). But as authors have stated there are problems with this way of thinking. First of all, it turns the ‘self’ into the ‘dependent variable’, when the brain changes, the ‘self’ changes with it. Furthermore, it denies the agency of the ABI survivors, by taking away their own active responses in dealing with the effects (ibid.). With this way of thinking all individuality and nuance is taken away; individuals are overshadowed by the biomedical ideas about how a brain works (Gelech & Desjardins 2011: 64). This type of reducing the individual to the brain does not tell us anything about the personal experiences of living with ABI (Gelech & Desjardins 2011; Medved & Brockmeier 2008). Living with a chronic condition is about more than the condition itself (Faircloth et al. 2004; Hyden 1997). In social sciences, an often-used method to access the experience of living with a chronic illness are illness narratives (Hyden 1997; Medved & Brockmeier 2008). The narratives as told by lay persons are a means to access the illness experience (Bury 2001: 264). Narratives are a way to express the meaning of living with a chronic condition. It is a way to reflect about oneself (Medved & Brockmeier 2008). Yet they are not only a way for individuals to reflect and express: these narratives are a fundamental part of individual’s self-concept (Bury 1982; Mattingly 1994; Nochi 1997; Williams10 1984). And a chronic illness, such as an ABI, can have a profound effect on these narratives, changing an individual’s ideas about one’s past, present and future, causing a ‘biographical disruption’. Bury’s notion of chronic illness as a biographical disruptive event has been very influential. According to Bury a chronic condition causes a disruption in one’s life, which leads to a rethinking of a person’s self-concept. Bury shows how everything that once was normal suddenly becomes abnormal. A chronic illness invades every aspect of life (Bury 1982: 173). This leads to a profound rethinking of the self-image, or ‘narrative reconstructions’ (Williams 1984: 197). In the social sciences Bury’s notion of a biographical disruption has been extensively used in research on stroke survivors (Faircloth et al. 2004: 256). A stroke, which is a disruption in the cerebral blood flow, is often the cause of an ABI. According to several authors, the suddenness of a stroke and the unexpected changes and uncertainty it brings with it cause people to reconsider their normal life trajectory. It causes their identity, or sense of self, to suffer as they have to come to terms with a new identity as a disabled person (Carroll & Croetzer 2001; Collings 2008; Ginsburg & Rapp 2013; Lawton 2003; Nochi 1997; 1998; Van Bost et al. 2005; Yeates et al. 2008). In these studies, the effects of a stroke are considered to have a profound disruptive effect on the individual’s life and identity. Other authors consider the notion of a biographic disruption too harsh and hypothetical. And although it has been very influential there are some who find it in need of nuance. According to Faircloth et al. the notion of a biographical disruption is also not generalizable, as individuals have their own illness experience (Faircloth et al: 2004). As they state ‘the lives of people who have had a stroke are not inevitably disrupted, and different symbolic significance may be attached to this experience’ (ibid.: 244). Some people may feel their lives are disrupted, others may feel their sense of self has stayed intact, embedding their illness experience in their life history as a part of their story instead of a disruption in their story. They call this a ‘biographical flow’, rather than a disruption. As they show a stroke, and the resulting ABI, are often seen as some of the many events that might happen in one’s life (ibid. 256). The same is argued by others, who show that their participants maintained a sense of self throughout their experience with ABI, regardless of the profound changes in their lives and functioning (McGrath & Linley 2006; Medved & Brockmeier 2008).
In a similar vein, several authors call for a more nuanced view of the experiences of ABI survivors. In the ABI literature ideas about a destructed sense of self are seen as a key part of the illness experience. Too often a disabling injury is only viewed through a negative lens, that they state is too simplistic (Gelech & Desjardins 2011; McGrath & Linley 2006). Gelech and Desjardins argue that ABI survivors seem to make a distinction between the public and the personal self. The public self, which is constructed in interaction with others and by our roles in society, is threatened by the disabling effects of an ABI. People’s inability to participate in previous (expected) roles, causes them to feel like they have lost certain aspects of their selfhood (2011.: 63). The individual self, as it is commonly seen
11 in the West, is a homogeneous, autonomous stable character, that is defined by the characteristics of the individual (ibid.). This self seems not to be disturbed by the ABI. According to them, the inner self even undergoes a moral growth process, after an ABI, instead of a process of loss and grief (ibid.: 70). They argue that the illness experience is more ambiguous than the ABI literature sketches, loss and grief are interchanged with growth and stability. They state that experience of identity should not be reduced to either continuity or disruption, and that these experiences are individual and not necessarily generalizable (ibid.: 72). In my research, I consider narratives as a window into the experiences of adolescents with ABI. Yet they are not only a window to access their experiences, these narratives are a fundamental part of individual’s self-concept (Bury 1982; Mattingly 1994; Nochi 1997; Williams 1984). But how is this self-concept influenced by the ABI, do these adolescents with ABI experience a biographic disruption, or might they speak about their life story and illness narratives in a biographical flow? In this research, I will try to stay close to the individual illness experience and try to shed a light on how this sense of self can be influenced by the ABI.
2.3. Ambiguity in the body
When I want to research the lived experience of adolescents with ABI I must also consider the physical aspects of living with a chronic condition. Lived experiences are not only accessible through narratives, and as Lawton states: ‘Opening the door to a broader range of methods and methodologies may also give access to a more broad-ranging and comprehensive picture of individual illness (and health) experiences than has typically been achieved through the use of research interviews’ (2003: 35). Living with a chronic illness means coping with a body that does not function the way it used to, which has its implications for how one thinks about oneself (Gelech & Desjardins 2011; Lawton 2003). Throughout the field of disability studies there has been a call to bring back the body and embodied experiences as indispensable parts of living with a disability (Hugh & Paterson 1997: 326).But how to conceptualise the body, and how to think about embodied experience? The way I conceptualise the body chimes with Scheper-Hughes and Lock’s notion of the individual body-self: ‘The phenomenological sense of the lived experience of the body-self […] as existing apart from other individual bodies’ (1987: 7). In the Western context, the experience of the individual body-self is influenced by the dialectical Cartesian distinction between body and mind (ibid.: 9). When writing about ABI this dualism creates a difficult analytical task: an ABI, a physical injury to the brain, influences cognitive, emotional and physical well-being. The mind, that ‘resides’ in the brain (ibid.), can be influenced by the ABI. The Cartesian body-mind dualism is something social scientists have struggled
12 with and have tried to overcome. Authors have tried to show how body, emotion and identity are interconnected (Scheper-Hughes & Lock 1987: 9, Wainwright & Turner 2011: 18).
As Hugh and Paterson state: more than living with a body, a body is also the apparatus through which we experience, it is our ‘window on the world’ (Hugh & Paterson 1997: 335). We have our bodies, as an object to reflect upon, as an object to mend and conform to our wishes. Yet we also are our bodies, and it sets the limits to our possibilities. But we also ‘do our bodies’ (Mol 2004: 46). In the mundaneness of everyday lives, we live with our bodies and use them in everyday practices. These practices are internalised, we enact them without giving them a second thought, and as such, they are taken for granted (Bury 1982: 173). This links to Leder’s notion of the ‘absent body’ (Leder 1990). Before a disruptive event people rarely consider their body as such, in everyday activities it just ‘is’. Living with a chronic condition changes these everyday practices. It renders them difficult, or impossible, people have to adjust to these new (in)capabilities. After a while these adjustments might become everyday practices as well, people learn to use their bodies in new ways and new everyday practices arise.
The ambiguity of living with a body after an ABI resides in the growth and loss that is also experienced in the sense of self. As shown in the PTG literature, when people live with a chronic illness they often revaluate aspects of their lives, including their bodies and the way they appraise their bodies. Individuals who live with serious impairments express a greater appreciation of all the things they are still capable of doing. They show a greater interest in mending the body in positive ways, learn to take better care of their bodies and are more aware of the way their body functions (Barskova & Oesterreich 2009; Hefferon et al. 2009; Taku & McDiarmid 2015). At the same time, other authors argue that people express grief over the loss of certain functioning of their bodies (Ellis-Hill & Horn 2000; Lawton 2003; Leder 1990). With this research, I hope to add to this discussion in showing how the body and the way it is experienced is of indispensable importance for the everyday experience of the self. Especially when living with a chronic condition which can influence the way one is able to use his or her body. I will try to do so by using the three conceptualisations of the body we have, are and experience through, and show how the body is experienced by the adolescents with ABI in different ways in each of these three conceptualisations.
2.4. Ambiguity in the surroundings
In social science, some theories consider the far-reaching effects of pivotal experiences on self and identity. Giddens notion of ‘fatal moments’ is one of these theories. Giddens states that ‘fateful moments are times when events come together in such a way that an individual stands, as it were, at
13 a crossroads in his existence’ (Giddens 1991: 113). In a similar vein, an ABI can be conceptualised as a ‘vital conjuncture’. According to Johnson-Hanks (2002) vital conjunctures are ‘a socially structured zone of possibility that emerges around specific periods of potential transformation in a life or lives. It is a temporary configuration of possible change, a duration of uncertainty and potential’ (Johnson-Hanks 2002: 871). An ABI can be defined in such a way, it is a pivotal, ‘vital event’ in an individual’s life that creates uncertainty and possibility. Life trajectories can be profoundly altered by the injury, and thereby also the social surroundings, nothing is certain and there are many possible outcomes. The notion of a vital conjuncture has to be nuanced when considering the lives of adolescents with ABI. The idea of a vital conjuncture is ingrained with limitless possibilities (Johnson-Hanks 2002). The effects of an ABI on the other hand are limiting. There can be numerous difficulties that might obstruct one’s possibilities to engage in certain behaviours. Yet at the same time the exclusion of certain choices leads to the consideration of other options that one might never have thought of before the ABI. As Vigh states: ‘the fact that our social environments are in (sometimes rapid and uncontrollable) motion is part of everyday life. We act, adjust and attune our strategies and tactics in relation to the way we experience and imagine and anticipate the movement and influence of social forces’ (2009: 420). New directions that an individual’s life might take, can cause their surroundings to change, but how are these changes appraised? To access the care they might need, adolescents with ABI enter the health-care system as a person with a disability. This means accepting the label ‘disabled person’ (Gelech & Desjardins 2011: 68). Accepting this label and the care, also means accepting the limitations that this brings with it. According to Gignac and Cott ‘the State has a direct impact on independence and dependence in its legislative efforts […] and in providing certain kinds and levels of opportunities, compensation, services, and programs’ (1998: 739). Often health-care professionals have a gatekeeping role, they choose whether or not one has access to certain opportunities (ibid.). This poses a problem in some cases, as becoming an autonomous individual is an expected developmental goal for adolescents in Western societies (2015: 228). This can create conflict for the person living with an ABI, on the one hand they need help and might appreciate the help they receive, on the other hand asking for help labels them. Which might bring limitations with it in the form of rules and societal expectations. In these changes, there is again a noticeable ambiguity. For example, as Hefferon et al. show, living with a chronic illness sometimes causes people to build stronger bonds with their friends and family. The support of family and friends during challenging times can deepen relationships (2009: 371). Individuals express that they felt supported by their social network. At the same time, other authors maintain that the need for support makes people more dependent on others. This dependence is not always appraised in a positive way, the role of a ‘dependent person’ is not always easily accepted (Gelech & Desjardins 2011; Lawton 2003). The changes in social relationships that a disability brings
14 with it can strengthen bonds, whilst at the same time cause a feeling of loss for the inability to exercise previous roles (Bury 1982; Estroff; 1989; Lawton 2003; Williams 1984).
2.5. Concluding remarks
In this thesis about the lived experience of adolescents with ABI, I want to consider the ambiguity that might be experienced throughout several aspects of their lives. How is this ambiguity noticeable in their narratives about their sense of self, in their experience of their bodies and in their experience of their surroundings? In their experience of the sense of self I will use theories about biographical disruption and biographical flow, to look at the ways these adolescents speak about and experience their illness. The way they experience their bodies I will try to untangle by using three theoretical notion of the body, and by discussing ways in which adolescents with ABI experience or talk about these notions. Lastly, I will discuss the ways in which these adolescents speak about and appraise their surroundings. Within these three aspects of their lives I want to look at the changes: what are the losses and growths they experience and how do they appraise these? As Gelech and Desjardins show the balancing of this ambivalence between loss and growth is a complex and individual process in which losses and the maintenance of meaning are constantly negotiated (ibid.: 62).3. objectives
By gaining insight into the experiences of adolescents with ABI, I hope to contribute to better assistance and care, and thereby their overall quality of life. The main question with which I have entered the field is: ‘How do Dutch adolescents with an acquired brain injury (ABI) experience and shape their everyday living with ABI, in the chronic phase of their condition?’ This question I divided in several sub-questions: • How do Dutch adolescents with ABI experience their identity? • How do Dutch adolescents with ABI experience their body? • In what way do Dutch adolescents with ABI experience changes in their social surroundings?
4. Methods
Anthropological fieldwork consists to a great extent of trying to take part in everyday activities. But depending on the type of fieldwork and the questions one is trying to answer, it can be combined with other types of data collecting (Erikson 2010: 28). This has also been the case for this research, in which15 the field has been explored with different methods such as (participant) observations, semi structured interviews and deep hanging out with the main participants. In this research, I deliberately entered the field with a broad view, starting with observations, narrowing this down to unstructured interviews and later to semi-structured interviews based on previous discoveries. In the following pages, I will describe the fieldwork period, the methods used during this period and the ups and downs of doing research, and how these were dealt with.
4.1. Getting acquainted with the field
In December 2017, I contacted an assisted-living facility in the Netherlands, to do volunteer work as a buddy. I became the buddy of an adolescent with ABI to become acquainted with the subject and to give my research proposal a sounder footing in real lived experiences. The idea to become a buddy proved to be a good one, as adolescents with ABI are a very dispersed group, especially in the chronic phase. There are not a lot of support groups, nor is there a lot of specialised care. This is also why this research does not have a clear-cut ‘field’; I met with adolescents from all over the Netherlands. Starting volunteer work gave me a head start in building a network for this research. In February, the official fieldwork period started. During the first month, I did participant observations with health-care professionals and with adolescents with ABI. The adolescents with ABI I was able to follow in their daily lives had a role as co-researchers, which will later be discussed in more detail. Furthermore, I was able to plan several interviews with health-care professionals and adolescents with ABI. The data collected in this explorative phase structured the rest of this research. The following paragraphs will give a more detailed description of the steps that were undertaken to get acquainted with the field. In February, I joined my main gate-keeper, Miriam2 – a client counsellor at the assisted-living facility in the Netherlands, where a lot of this research has been conducted – to three meetings and two workdays. During these days, I was able to do participant observations, in the form of ‘negotiated interactive participation’ (Wind 2008). As a researcher, I was not able to help in her work as a client counsellor, or to become fully emerged in the daily life at the assisted-living facility. Yet I was present and helped with little things. My presence as a researcher was always made clear to Miriam’s clients and this research was often the topic of conversation. Coincidentally five of Miriam’s clients fell within the age category of this research. The days shared with Miriam were therefor rich in data. In this first month of doing explorative research I met with the co-researchers, Lisette and Jeremy, who were introduced to me by Miriam. Their role as co-researchers has been inspired by participatory research methods, that tries to engage the participants in the research process (Cargo &2 All names mentioned in this thesis are pseudonyms that I have chosen to use to ensure anonymity for all participants.
16 Mercer 2008: 326). Their role consisted of being my main participants with which I shared my findings which they then reflected on. They have helped in forming a more nuanced understanding of the differences and commonalities of adolescents with ABI. I joined them in their daily lives, attending their work and/or school days. We planned days out and had dinner together. These days allowed me to observe how they handled themselves in their daily lives and showed me moments when they encountered limitations caused by their ABI. The frequent contact with the co-researchers and the duration of our relationship gave me a deeper understanding of their daily lives, their social surroundings and their own personality. Furthermore, it has created space in this research for their own interpretations.
In this explorative phase of this research I also conducted unstructured interviews with two health-care professionals and two adolescents with ABI, not counting the co-researchers. These interviews helped in getting acquainted with different aspects of living with ABI and considering which aspects were most interesting, and what the participants thought was most relevant. These interviews, combined with the data collected from the participant observations with Miriam, Lisette and Jeremy, were the base on which the semi-structured interviews were later built.
4.2. Semi-structured interviews
Based on the knowledge gained in the first month of this research a semi structured interview was designed. In designing this, it not only mattered what I wanted to know, but also what could be expected from the participants. Speaking about a topic that might have a big impact on someone’s life can be emotionally challenging. On top of that the participant might have difficulties with speaking, concentrating, short term memory, or energy levels. All of this can cause methodological difficulties (Gelech and Desjardins 2011: 65). Therefore, the designed interview structure was comprised of different methods. Using different methods made it possible to switch: if one of the methods would not work out, another method could be used. The interviews were practiced with the co-researchers and provided with feedback, before interviewing others. From these tests, it became clear that for Lisette the interview was too long. Yet for Jeremy it was easy and he doubled the time of the interview. This meant I had to stay extra sensitive towards the participant’s capacities during the interviews. The interview covered three subjects, related to the sub questions formulated in chapter 3. It was divided in questions about the experiences of adolescents with ABI concerning their sense of self, their body, and their social surroundings. The first part of the interview was about their life history, who they are, their experiences with ABI and their general ideas about life. In this their illness narratives were elicited. The second part of the interview was about their surroundings. With the help of Miriam, a social mapping method was created. This consisted of a stack of cards with different social17 institutions or personal relations written on them, things like ‘parents’, ‘school’, ‘church’ and ‘siblings’. The participants were asked to place the cards on three sheets of paper with ‘my past’, ‘my present’, ‘my future’, written on them. The cards were placed in line with the distance the person or institution had to them. In this way, they could make the changes in their surroundings visible, this gave us a way to discuss these changes (image 1). The last part of the interview was a body mapping method (image 2). This method was used as a way to speak with the participants about their body and the effects of the ABI. It was based on a head to toe interview style, from the unpublished document: ‘Chemical Youth Interview Guide’.3 This is an interview style with which the body is used as the guiding tool for the interview. Starting from the head and ending with the toes, questions were asked about the effects of the ABI the participants experienced. With these guiding questions participants would add more images to their drawings.
Image 1
Image 2
3 https://chemicalyouth.org/18
4.3. Finding participants
A big part of the research time has been spent on networking, sending emails to numerous individuals and organisations. I have been in contact with 21 different individuals and organisations. All of them were very helpful; even if they were not able to help directly they often pointed out new directions. Some allowed me to post messages on forums or in Facebook groups, which led to a few reactions from individuals who wanted to partake in the research. Other ways in which I searched for participants was by accessing my own network of friends, family and acquaintances. The last way I found participants was via snowball sampling; when I went along with my co-researchers I met more adolescents with ABI who I could then ask if they wanted to be interviewed. Finding participants was a difficult task. Eventually 15 interviews were conducted. The people who participated in the interviews ranged from 17 years old to 72 years old, most were in their early twenties, all had suffered their injuries between the ages of 17 and 25. Six women and nine men were interviewed. Most participants were met in person, in their house or in public places. Three out of 15 interviews were performed using different media; one took place via skype, another was a phone call and one was written and handed in.4.4. Data handling and analysis
At the beginning of each interview I would introduce myself and the research. Participants would read and fill in the informed consent form, furthermore their permission would be asked to audio-record the interview. All but one interview were audio-recorded with a smartphone. This one interview was with a young woman who struggled with dysphagia. This caused her voice to sound different, which made her very self-conscious. To prevent damaging the rapport the recordings were turned off. During this interview, a lot of notes were made, which were transcribed in a summary. All other interviews are recorded and transcribed. Each interview transcript is introduced with a short summary of the observations done during the interview. These summaries are about the way a participant looks and behaves. In these summaries, I tried to grasp the physical, noticeable aspects of their ABI. I was not able to record all days I tagged along with either Miriam, Lisette or Jeremy. The days that could not be recorded are transcribed in summaries. These transcripts were based on memories and on short memo’s written during the day.The collected data has been analysed using dedoose.com, an online qualitative data analysis tool. The type of analysis that has been done is thematic analysis. From the data, interesting and relevant excerpts were selected and categorised according to fitting labels or codes. Within these categories connections and patterns were made. This allowed me to reflect upon the data in a thematic way (Seidman 2006: 125). During the research, I have stayed busy with transcribing and noting
19 interesting recurrent themes in the interviews and observations. This led to preliminary results which guided my interests during the research. These preliminary results have also been the starting point for the rest of the analysis and this thesis.
4.5. Reflexivity
Researching adolescents with ABI has asked for a reflexive approach. I dealt with people who had often suffered from their injuries and some had emotional and mental difficulties due to this. Therefore, I have made sure my participants were informed about the topic of my research. There has always been informed consent. Aside from making clear that they did not have to answer and that they could exit the interview at any time, I was always sensitive towards the participants, not probing further when I noticed distress or hesitation. I stayed attentive to their feelings by asking them whether or not I could ask questions about a certain topic. Furthermore, I avoided terms that they might feel stigmatize them, such as: disabled, disability or handicapped. In the interviews, I always tried to adjust to the vocabularies the participants used themselves, sometimes even asking how they would formulate something. By practicing the interview format with the co-researchers, I had a test run in all of this. The sample of participants I have been able to interview lived with divers physical, cognitive and emotional impairments. All participants were capable of communicating and of self-reflection. This was a prerequisite for me to be able to interview them. This has influenced the data I have been able to collect, as people living with more severe physical, cognitive and/or emotional impairments have been excluded from this research. I have tried to get in touch with care facilities where more severely disabled adolescents lived, but I have not been allowed access. It is possible that adolescents who have to deal with more severe effects have a different understanding of their lives. Being capable communicating and of self-reflection was necessary for me to be able to interview someone. Yet some of the participants were less capable of self-reflection. For example, one time I had the feeling one of the participants had a different view of reality, which I discussed with one of her coaches. In this conversation with the coach, it became clear there was a gap between their understanding of certain situations. As I was interested in the way adolescents with ABI experienced life, her answers have not been less valuable to me than the ‘objective truth’. During my research, I had to be aware of my personal characteristics. I researched people from my own age group. This created similarities between me and my research population, that could have had positive and negative influences. A positive effect of the similarities is that I have been able to relate to them. Often there were some shared interests. These shared interests often lead to better rapport. Flowing in and out of the interview, mixing it with normal conversation, has sometimes led to interesting information. Yet, as stated above, the similarities between me and my research population20 could have had negative effects, which I always took into account. My age, high educational level, and in general my ‘normal’ life, might have led to a negative comparison between themselves and me. To avoid this, I never spoke in depth about my own life and always tried to stay close to their stories. My age and gender also made me cautious about possible romantic feelings of male participants. In two cases participants started to give me compliments, which I accepted but gently countered with a comment about my boyfriend. Lastly, I have been reflexive about my own ideas and my emotional well-being. The subject ABI is something that I am personally involved with. My cousin suffered an ABI when he was sixteen years old, I was twenty-one at that time. This has influenced my thinking on the subject. I have not shared this information with all of my participants, only when I was asked why I was interested in the topic of ABI, did I tell about my personal experiences. I chose to only speak about it in those circumstances because the interviews were not about me or my cousin, they were about the person I was interviewing: I did not want to take attention away from their stories. Despite this personal involvement with the subject I have not experienced any emotional downfalls, if anything I have been able to better relate to my participants. The illness narratives and hospital experiences hardly shocked me, I knew a lot of the procedures and common effects of an ABI, which allowed the conversations to become more in depth. Often it provided me with knowledge that made it easier to probe for more information. Yet I feel confident my results are not biased, the variety within this group of people has asked a lot of openness to possible interpretations from my part. Often my preconceived ideas turned out to be in need of quite some nuances.
5. Ambiguity in the sense of self
Ideas about the sense of self are a central topic in anthropology. Identity, personhood, roles, what is it that makes a person feel like him or herself? One of the ways this is conceptualised in social sciences is by seeing one’s identity as a coherent biographical story. We have stories of our past, present and future with which we construct our identity (Bury 1982; Mattingly 1994; Nochi 1997; Williams 1984; Yeates et al. 2008). A sudden change in this story line can cause confusion and chaos in the sense of self. Stories and ideas we had of ourselves may no longer be relevant (Bury 1982; Collings 2008; Lawton 2003; Nochi 1997; Williams 1984; Yeates et al. 2008). The sociologist Bury (1982), and many social scientists after him, conceptualised this phenomenon as a biographical disruption. On face value the concept seems appropriate for understanding the effects of an ABI. After an ABI, it is thought that people face a rupture in their sense of self, everything that once was normal has to be reconsidered and people have to learn to live with a ‘new me’. Although the notion of a biographical disruption has been very influential, in this chapter I would like to nuance it in two ways.21 Firstly, in the data that I will present I have not only heard stories of disruption, but also of continuance and of a ‘biographical flow’. Sudden as they may have been, people nonetheless consider the changes a part of their ongoing life story. Secondly, the experience in living with ABI is not only characterised by personal losses, but also by personal growth. In the following pages, I would like to show how my participants not only speak about the effects of an ABI as disruptive, but also as self-enhancing.
5.1. Biographical disruption or flow?
A common popular and scientific assumption is that after neurological damage identity change occurs. Due to an ABI people’s characters can change, they might become more impulsive, less self-aware or obsessive in their behaviours (Middleton 2005: 63). Aside from the changes in character, people’s physical and cognitive abilities can be affected, which can also have an effect on how we feel and think about ourselves (ibid.). But do these changes necessarily cause confusion in the sense of self? And if this is the case, how is this experienced by adolescents with ABI? Does the term biographical disruption reflect real life experiences? Yes, I mean, it is quite hard actually, you really have to build a second life. […] Everything has changed really. And you have to rebuild everything, your whole life. – Lisette I would say it really is like being born again. In a sense, I also think of this as a 2.0 version of me. Brian version 2.0. Yes, you really are reborn. Because especially in the beginning, you have lost everything, I couldn’t do anything, I was like a baby, including the diapers. – Brian In these excerpts Brian and Lisette speak about the profound changes they have experienced. Brian goes as far as saying that he was reborn in a way, having to completely relearn everything. Often the adolescents I interviewed spoke about the immense changes they experienced. For example, to Jeremy it was one of the core aspects of living with ABI: The ABI, yeah it really is, you just have to deal with a complete change in everything. – Jeremy One could say that the previous examples show that the notion of a biographical disruption is relevant for the experience of the sense of self to adolescents with ABI, as some expressed a feeling of22 immense change and interruption of normal life. Yet another trend was visible in my data. In the same interview Brian, later on continued by stating: I mean, my rehabilitation phase, I don’t feel like that person anymore, but it’s still a big part of what I’ve experienced in my life. And I think I am still growing every day. And I notice this in everything, which feels great. But still it is, you’re always busy and, yeah, you never really know how it’s going to end. But that’s the thing with life, right? You just have goals that you set for yourself and you try to reach those. And I mean every human is always developing, changing. And you, like you have no impairments, but you are always growing as well. Developing into new life phases. And I mean, five years from now, you might be a completely different person from who you are now. You learn, you go forward, at least that’s the assumption. Everybody improves, so I don’t really know where my story will end. I will never become who I was, that’s impossible. But I also don’t know in what direction my new self will develop. – Brian In this excerpt Brian clearly talks about his sense of self in the past, present and future in a coherent way. He does not feel like the same person but he acknowledges the fact that the rehabilitation was a part of his life. Furthermore, he talks about how everyone is always changing and developing in life and how he does not know where his story might end. The way in which Brian speaks about his ABI experience was a recurrent trend in all the interviews. When talking about their life story and their experiences, more often than not my participants embedded their ABI in their ongoing life story. For that reason, I propose to use the term biographical flow (Faircloth et al.: 2004) to conceptualise the experience of the sense of self for adolescents with ABI. In their narratives, these adolescents did not always speak about a disruption in the way they construct their sense of self. As we will see in the following section, there are several other ways in which adolescents with ABI spoke about their sense of self in relation to the changes they have experienced.
5.2. Narrative strategies
The adolescents with ABI I spoke with more often than not embedded their illness narratives into their ongoing biography. There are different narrative strategies with which they did so. These narrative strategies are conceptualised as narrative reconstructions by Williams (1984). These are the ways in which individuals try to place their illness experience in a meaningful way in their ongoing narrative. I choose to speak about narrative strategies as the notion of a reconstruction conveys the idea that a construct has been broken and needs to be mended. As the adolescents with ABI I spoke with did not
23 speak about their identities being disrupted, I find the term strategies more fitting to their own explanations. There are different ways in which my participants embedded their illness narratives in their ongoing life story. Some of my participants for example stated that the ABI is now part of who they are, and that they would not change their past if they could: Well before all this I could do anything. And now I can’t do any of it anymore. Yes, that’s a big change. But sometimes, you know, if you would ask me whether or not I would want to have had my accident. I don’t think I would have wanted to miss it. I have to live with the disabilities but they are a part of me and my life now. – Rianne I have had an awesome childhood and I wouldn’t change any of it! And yes, my accident is part of that. Sometimes people ask me if I wish it had never happened, but honestly, I wouldn’t know! For all we know if it hadn’t happened I would’ve been killed five minutes later. I could’ve been hit by a meteorite, or I could’ve won the lottery. Thinking about what could’ve happened is impossible, there are too many variables! If it would not have happened I would’ve studied business engineering, I don’t think that would have made me any happier than I am now! – Jeremy In these statements Rianne and Jeremy clearly speak about how their illness experience is part of their identity now, it has been embedded in their greater life biography and is not seen as an ‘eminent invader of everyday life’ (ibid.: 244). Instead they show how it has become part of what defined them.
According to Faircloth et al. people use different narrative strategies to place their illness experience in their ongoing biography. From my data, there were three general trends noticeable in which adolescents with ABI ‘melted’ (ibid.) their illness experience into their stories. The first I already discussed, which is that they show how it is an unchangeable part of their story. The second is that they speak about the fact that all individuals change during their lifetime: Yes, I, I experience myself as one and the same person. I mean, luckily, it would be weird if I didn’t, right? The person I was and the person I am, that’s the same person. And look, you know, everybody changes. Their looks, ideas and experiences, everybody changes. – John
24 For me I would say it is part of my life story. It’s not as if I am living a second life. I am still the same person I was before, I just changed a little. I do things differently and I have different ideas about life. – Paul These examples show that although the changes one might experience due to an ABI can be immense, there is not necessarily a loss of the sense of self. Paul and John rejected the idea of a changed sense of self and furthermore spoke about how ‘changes’ are a part of every individual’s life. In this way, they normalised the changes they have experienced and placed them in their ongoing narrative. In the following statement Roan expresses the same sentiment:
I went from nothing to something. You know, I was born and I grew and then I had my accident and I got thrown back. And now I am starting to climb back up. I think, I think everybody changes. Everybody changes and maybe the accident changed me a lot, but I don’t know. But I do know that everybody changes. – Roan As several authors have argued, the sense of self is fluid, we change over time and from situation to situation (Erikson 2010; Gelech & Desjardins 2011; Mattingly 1998; Medved & Brockmeier 2008). Life is always in fluctuation. Individuals change and we adjust ourselves to new situations and life phases (Vigh 2009: 240). That everything is always in motion and changing seems to be used as a normalising statement to place the illness experience in ongoing life stories. There is also another narrative strategy in which the notion of change is used. Some of my participants used their ‘growing up’ as a way to normalise the changes they experienced. This is the third way in which the adolescents embedded their illness experience in their greater life story: True, I used to go out three times a week. But it’s like, you know you’re young and you want to go out. But everybody does that and then at a certain point you have less interest in those sorts of things. You know you do it because everybody does it. – Jeremy Well I haven’t changed that much I think, obviously I’ve grown up a lot. And my clothing style has changed a lot as well. But I feel, I feel that now I am becoming who I really am, you know? I mean I was seventeen when it [the accident] happened, and at that age you are still developing into who you really are.
25 – Lisette Life experiences shape individuals and changes how one thinks, feels and acts. This fluidity seemed to be a way for these adolescents with ABI to make sense of the changes they had experienced and to maintain a coherent sense of self throughout their illness experience. They did so in three ways, the first was by explaining how the ABI had become part of who they were now. The second way was stating that everybody changes. And the third was that they stated they had changed due to the fact that they got older. These remarks made by my participants have a normalising effect; stating that everybody changes, or that they have changed due to their ageing, makes it a normal aspect of every human life (Faircloth et al. 2004: 247). They placed their experiences in the bigger narrative of ongoing life. This shows how the notion of a biographical flow, rather than a disruption, is more relevant in conceptualising their illness experiences. From the data it has become clear how the notion of a biographical disruption is not the most relevant conceptualisation for the way the adolescents with ABI spoke about their life and illness narratives. Often the adolescents I interviewed embedded their illness experience in their larger biography, expressing what I, and other authors, would call a biographical flow. In doing so they presented their sense of self, in their narratives, as stable throughout their life. Yet as others have argued this does not mean that this sense of self is always seamless and coherent (Medved & Brockmeier 2008: 476). This brings me to the next subject of this chapter about the sense of self, the ambiguity concerning the sense of self that is expressed by the adolescents with ABI.
5.2. Ambiguous appraisals
5.2.1. Appreciation of life
As shown in the previous pages adolescents with ABI often expressed that they maintained their sense of self throughout their life stories. They placed their illness experiences in their greater narratives as a part of ongoing life changes. Yet as authors have argued this process of narrative reconstruction (Williams: 1984) is not seamless (Medved & Brockmeier 2008: 476). It is a process in which both losses and growths are negotiated by the individual in his or her own way: It is such a negative experience, the rehabilitation is negative, all the long-term outcomes are negative. But there are also positive sides to it. For example, I have learned to enjoy the small things in life. Small things are so much more valuable to me now, mostly because I know it is such a miracle that I’m still around. – Brian26 In this short excerpt Brian expresses ambivalent feelings towards his life with ABI. In this excerpt, he mentions both the positive and the negative sides consecutively. While he is speaking it seems he is negotiating the balance between both sides, which shows his ambivalent feelings towards the illness experience. Like Brian a lot of my participants weighed the losses and the gains by mentioning both sides of the experience consecutively. As Mattingly shows, the narrative identity is always under construction and always in a state of being and becoming as the story is told (1998).
In the previous example Brian spoke about a new appreciation of life, stating that small things are much more valuable to him now. This new awareness is one of several positive changes my participants reported. The positive changes adolescents with ABI spoke about link with theories about post traumatic growth (PTG); after a traumatic experience people may also experience personal growth (Hefferon et al. 2009: 343). In the literature, these positive changes are categorised in several core domains. I will consider three of these domains in relation to ideas about the self: (1) a new appreciation of life, (2) self-understanding, (3) new dimensions of personal strength (Barskova & R. Oesterreich 2009: 1709). I will show how these gains are weighed against the losses by the participants. After a traumatic event people often express a new appreciation of life. According to Hefferon and colleagues (2009). the notion of ‘enjoying the simple things in life’ is expressed by participants in PTG literature. Furthermore, participants often reported a new appreciation of the past (ibid.: 370). In the following two excerpt Lisette expresses these sentiments: Now I just enjoy all the small things you know, those moments when you just feel happy for no reason? – Lisette When I was younger I didn’t think about any of that stuff, I didn’t care, I was young and foolish and I had not experienced yet that, in a blink of an eye, it could all be over! If I could turn back the time to before my accident I would definitely be so much more appreciative of everything. – Lisette Lisette speaks about how the near-death experience has taught her to appreciate, not only the small things in the present, but also her past life. This new appreciation of life due to the near-death experience was also expressed by Davey. He is a young man who has lived with mental disorders from when he was five years old. As he explained to me:
