Axon: Creative Explorations

The illness narrative

In 1994, Lucy Grealy published Autobiography of a Face (Grealy 2003: 3; First Perennial edition), her memoir about childhood cancer and the resulting facial disfigurement she endured for the rest of her life. Her intention in writing it, stated her friend and fellow writer Anne Patchett, was not to be an inspiration to others who had suffered terrible illness but to have produced something of literary merit (Patchett 2003: 230). Nonetheless, Autobiography of a Face was received with much acclaim not only for its lyricism, but also for the in-depth way it explored notions of identity and self within the illness experience (DasGupta 2007; Mojtabai 1994; Zbar 1995).

Autobiography of a Face is classified as an illness narrative; the story of how a Ewing’s sarcoma embedded in the jaw of a nine year old continued to impact on Lucy Grealy’s idea of ‘self’ even after the cancer was cured. She was 27 when she wrote the book — an adult writing about her childhood. Grealy had reached an age, and a stage, where she could eloquently articulate her experiences. It can be assumed that nine-year-old Lucy would not have had the skills, nor the perspective, to communicate the depth of her story through a written text.

Grealy’s book is one of few reflections on childhood illness. While nonfiction illness narratives of adults are numerous, published paediatric illness narratives (those of children and young people up to eighteen years of age) are ‘a particularly small subgenre’ (DasGupta 2007: e1388) of memoir writing and remain relatively unexplored (Day 2012: 115). The reasons for this paucity are multifaceted: physically and neurologically, young children’s abilities to articulate their experiences are not as developed as adults’. Adolescents, too, suffer from a ‘social voicelessness’ (DasGupta 2007: e1388) that arises from the complexity associated with cognitive and social development (Bearman, Bowes & Jolly 2005). Most stories about childhood illness are written by ‘adults remembering … or (by) the parents of ill children’ (DasGupta 2007: e1388). Autobiography of a Face, with its ‘candid thoughts’ and ‘graceful and articulate prose’ (Zbar 1995: 949), remains the story of an adult reflecting on her childhood and adolescence.

The point of view of children and adolescents is most visible in works of fiction although adults write the majority of these published stories. These stories are non-peer texts; that is, ‘texts with an adult as implied author and a child as implied reader’ (Head 1996: 28). Children’s and young adult literature differ from ‘conventional’ literary genres in that they encompass a range of books that could be construed as a category referring to its intended audience rather than to a time, place or a specific type of writing (Nodelman 2008: 3). Nonetheless, these narratives are the subject of ongoing scholarly discussion regarding their role in cultural discourse (Bradford 2017; Garcia 2013; Nodelman 2008; Reynolds 2007; Rose 1984; Scutter 1999).

Books for young adults, in particular ‘positively transformative texts’ (Reynolds 2007: 77), play a significant role in helping adolescent readers negotiate ways of interacting with others and reflecting on their lives. The voices of young people are ‘heard’ in these texts, and they are where the reader can discover the experience of illness. I have labelled texts involving protagonists with chronic illness as young adult illness fictions.

Young adult illness fictions

There is a body of scholarly work around contemporary representations of young people in young adult literature that suggests an alignment of more recent texts with an understanding of youth culture (Reynolds 2007: 71; Trites 2000: 146). The connection has significance for young people because of its reflection on, and of, their lives (Potter 2007: 28), and has ‘contributed to reconfiguring adolescence’ (Reynolds 2007: 71). This reconfiguration includes a changed focus from stereotyped characteristics of adolescents as powerless individuals struggling with identity to broader reflections about culture and power dynamics (Trites 2000: 3), and changes in youth culture and gender (Reynolds 2007: 74). The resulting implication is that young adult literature can have the power to armour its readers, increasing their resilience to life changes though evaluation and synthesis of text content and characterisation (Bodart, Barrineau & Flamino 2011).

Although illness fictions are not the direct ‘true life’ stories of adolescents, they can be texts that provide a foundation for meaning-making about adolescents undergoing an illness experience. Within young adult illness fictions, there are two distinct sub-categories of texts that share a common foundation in the trend for realistic fiction that emerged in the 1960s (Reynolds 2007: 2). The first is a particular subset of issue-focused young adult problem-based novels that prospered in the 1970s and 1980s, and have been labelled ‘teen sick-lit’ (Elman 2012: 175). The second category still engages significantly with issues of illness as its basis but encompasses young adult literature constructed with the ‘potential to offer important critiques of ableist, ageist and heteronormative representations of sexuality, intimacy and recovery’ (Elman 2012: 177).

‘Problem’ or ‘issue-based’ novels arose out of early types of realistic fiction that placed importance on including many and varied problems for their characters (Sturm & Michel 2009: 40). Elman describes them as ‘sad books that “felt real”,’ with an emphasis on adolescent ‘emotional excessiveness as a natural (but pathological) condition’ (Elman 2012: 189). Problem novels as a sub-category of young adult literature have been ‘derided by literary critics for pedestrian language, superficial treatment of important issues, exaggerated problems and formulaic plots’ (Day 2012: 115) and often had ‘a nearly unrealistic number of problems, (and) poor quality of writing’ (Sturm & Michel 2009: 40). The focus on previously taboo subjects such as rape or death was criticised for prematurely foreclosing on childhood as readers were moved — via the characters in the story — towards more adult understandings of the world (Reynolds 2007: 2). ‘Teen sick-lit’ aligns itself with the problem-novel as an affective genre, states Elman, by often linking to a normative subject positioning framework of traditional social roles that include stereotyped gender, sexuality, wellness and emotional responses (Elman 2012: 176). The novels of USA writer Lurlene McDaniel are cited as popular examples of teen sick-lit, and are seen by some critics as blatant attempts to continue conservative and gender-traditional ways of being (Elman 2012; Kumbier 2005; op de Beeck 2004).

The formulaic structure of problem novels has waned to make way for realistic fiction characterised by better quality writing, more complexity and of a less predictable structure (McEntyre 1999: 37; Sturm & Michel 2009: 44–45). These texts forego what Alana Kumbier describes as tortuous depictions of illness coupled with sensationalised treatment regimens driven by formulaic plots (Kumbier 2005), and instead offer credible character development around the complexities of having a chronic illness.

Researchers report that the concerns of young people with chronic illness mirror the concerns of healthy adolescents. Ill adolescents have a strong desire to be accepted as normal teenagers even though they understand that their illness often creates social and management dilemmas, and therefore imposes limits upon ‘normalcy’ (Honey et al. 2009; Taylor, Gibson & Franck 2008; Van Staa et al. 2008). Reynolds, however, argues that young adult readers want realistic books about social issues and difficult decisions (Reynolds 2007: 79), and this suggests a desire for faithful portrayals of illness and its impact on a young person’s life (Saad 2004). Analysing illness fictions to ascertain this faithfulness is difficult without comparison to the real experiences of illness. In health and sociological research, sociologist Arthur Frank’s typology of illness narratives is an often-used framework for appreciating the experience of being ill. Understanding this framework is useful, particularly in the imagination of the creative work.

Frank’s typology of illness narratives

Frank presents an illness narrative typology in his book, The Wounded Storyteller (1995). While acknowledging that types of narrative are ‘analytic categories’ (Rimmon-Kenan 2002: 15) that confine stories into narrow groups, Arthur Frank’s typology with its three categories has nonetheless been adapted by other scholars to explore the oral narratives of people living with illness.

Frank’s typology of illness narratives arises from his observations that illness, acute or chronic, is a ‘call for stories’ (Frank 1995: 53). When you are seriously ill, he states, you tell your illness story regularly, particularly to health professionals or those looking after you. In each account, the individual presents a ‘self-story’ (Frank 1995: 55) which at the same time endorses their sense of identity. These stories, however, are told through the narrative templates (the ‘master narratives’) society and culture makes ‘available’ to the storytellers (Bury 2001: 269; Frank 1995: 75; Kleinman 1988: 5). Frank proposes that the three main narrative types framing illness in Western culture — restitution, chaos and quest — fit into master narratives understood by contemporary society, including the naming story (where a disease is named and therefore it is known how to manage it) and the hero’s story (a journey of quest and conquest, of becoming well again) (Frank 1995: 76, 117).

Frank’s first narrative illness type is restitution. Restitution narratives generally consider that for every suffering there is a remedy — as in ‘yesterday I was healthy, today I’m sick, but tomorrow I’ll be healthy again’ (Frank 1995: 77). Out of the three narrative types, restitution is generally the western culturally-preferred narrative since it heralds the triumph of modern medicine and human resilience (Frank 1995: 77; Nosek, Kennedy & Gudmundsdottir 2012: 997; Thomas-MacLean 2004: 1648; Whitehead 2006: 2238). Restitution has been called a ‘master narrative’ as from it arises the language of fight and survival, and being ‘successfully’ ill (Kleinman 1988: 5). In a restitution narrative, the body is presented as restorable, wanting to be cured, and disassociated from the identity of the storyteller (Frank 1995: 85). ‘Concrete hope’ is a feature of restitution, and reflects a desired outcome linked to specific results, such as transformative medical care or a positive technical outcome (Smith & Sparkes 2005: 1096). Restitution stories bear witness to the expertise of others and not the struggles of the self (Frank 1995: 92).

The second of Frank’s narrative types is the chaos narrative. Chaos narratives, in contrast to restitution narratives, tell amorphous stories in which life cannot be imagined improving in quality (Frank 1995: 97). In chaos, the body has no agency and the self has no voice (Frank 1995: 104). The absence of narrative order and lack of sequencing make chaos stories threatening to the listener, provoking an anxiety that ‘inhibits hearing’ (Frank 1995: 98) and keeps the storyteller distanced. Smith and Sparkes suggest that the key to these stories is their lack of concrete hope, and that they should be more accurately labelled as narratives of despair (Smith & Sparkes 2005: 1101). France et al. also prefer ‘despair’ over chaos as a definition, arguing that despair narratives have some structure (France et al. 2013: 1656), making them more likely to be ‘heard’. Whether despair or chaos in title, these narratives reflect the ‘narrative wreckage’ Frank describes in stories that have lost their sense of temporality (Frank 1995: 55).

Frank’s third narrative type is the quest. Quest narratives not only accept the illness but seek to make it useful (Frank 1995: 115). The storyteller has a voice. They use the telling of the story to return meaning to their life. Frank asserts that the self-story from a quest narrative is ‘how do I rise to the occasion?’ (Frank 1995: 128) and that ‘through the story the body offers itself to others’ (Frank 1995: 127) in a testimony to the gains that may come from having an illness. Most published illness narratives are quest stories because of the storyteller’s actions in their own recovery (France et al. 2013: 1650).

Frank’s typology is usually applied to oral stories or works of nonfiction but in the absence of these from adolescents, my research project focused on its use for illness fictions.

Researching young adult illness fictions

To gather a cohort of books for the project, I explored literary awards foremost, and then bestseller lists, book review websites and book review journals specifically related to young adult literature during the period 2003–2015 in order to identify illness fictions that demonstrated literary merit. I used Frank’s typology as a framework for text analysis, and discovered that, for adolescents, it did not embrace all types of illness experience.

I used an evaluation framework for content information gathering in order to identify protagonists with an attribute of chronic illness. This screening process identified nine books that met the central criteria of having protagonists with illness experiences during the allocated time period. They are Just in Case (Rosoff 2006), The 10pm Question (De Goldi 2008), How I Live Now (Rosoff 2004), On the Jellicoe Road (Marchetta 2006), The Absolutely True Diary of a Part-time Indian (Alexie 2007), The Dead I Know (Gardner 2011), Going Bovine (Bray 2009), The Astonishing Life of Octavian Nothing, Traitor to the Nation, Volume 1: The Pox Party (MT Anderson, 2006), and The Protected (Zorn 2014).

As well as these award-winning books, there have been other books published between 2003–2015 that I have also categorised as ‘literary illness texts’, using my subjective application of the descriptive criteria from the literary awards investigated. After a review of best seller lists, book review websites and book review journals, I focused on five literary illness texts that have been regularly discussed and critiqued, some in very public forums (Acuna 2014; Carey 2013; Yahr 2014). These books are The Fault in our Stars (Green 2012), Zac & Mia (Betts 2013), Before I Die (Downham 2007), Wintergirls (LH Anderson, 2009) and A Note of Madness (Suzuma 2006). This, of course, is not an exclusive list.

Using these fourteen texts as exemplars of literary illness texts, I asked ‘What is the story that the character tells about their illness?’ This allowed me to ‘read’ the narrative identity of the main character and therefore the text’s narrative type according to Frank’s thesis. Investigating narrative type also informed my decision-making in the development of my own creative works, and how I was going to represent the narrative identity of my protagonists. 

There were two stages to the analysis of the identified texts. The first involved the use of a rubric based on Frank’s illness narrative typology. It considered four elements: plot, the body, self-story and power. The rubric was used to reflect on three stages of the literary illness text’s story arc — the set-up, the complication or conflict, and the resolution (Disher 2001: 114). Frank acknowledges that, in illness texts generally, all of his identified narrative types are used ‘alternatively and repeatedly’ (Frank 1995: 76) but one is usually dominant for any given story. I used the dominant narrative type over the three stages in an attempt to classify the illness text into an illness narrative type as indicated by Frank’s typology. 

The second stage of analysis involved analysing the story told by the main character about their illness, and determining the effects of their illness upon their narrative identity. This more nuanced stage assisted in evaluating the initial results from the rubric. This is where Arthur Frank’s original three-part typology — comprising restitution, chaos and quest — did not fully support the results.

Extending Frank’s typology of illness narratives

What is absent within Frank’s typology are narrative types that acknowledge that some illnesses are present but relatively stable, and have already had significant influence upon an individual’s identity development. These illnesses are ever-present in the background of a chronically affected person and so are part of their ongoing life story (Frank 1995; Yates et al. 2010). The stories are not dominantly restitutive, chaotic or questing in intent but still frame the construction of the character’s narrative identity. An extended typology to include additional narrative types more indicative of a young person’s experience of illness would be beneficial for scholars and readers analysing existing works, and writers creating more complex, realistic illness fictions. I therefore propose two additional narrative types about chronic illness during adolescence: foundation and agentic.

Foundation narratives consider that life will always contain illness, as it was existent from its beginning. These illnesses may have been present from birth or have occurred during childhood but well before the experience of adolescence. In general, an individual cannot remember a time without the illness, or enters adolescence with an illness already established, and so has no previous ‘wellness schema’ for comparison. Foundation narratives are stories that present the body as it is now and has always been.

Agentic narratives are those in which the illness is empowering but not, as in quest or restitution, as a return to the meaning and purpose associated with wellness. These illnesses give new meaning to an individual’s life, and enable them to act with an agency not present before. Agentic narratives are therefore told through bodies armoured by illness.

This extended typology is inclusive of young adult illness fictions. Classifying texts according to their dominant narrative assists the reader in interpretation and understanding of the experience. Writers using the extended typology now have a more nuanced framework to assist in realistic creation of their protagonists’ illness experience.

Meaning-making through the extended illness narrative typology

Although my day jobs as a physiotherapist and an educator in medical education have exposed me to many stories of illness, I had not considered how these narratives were shaped nor how they influenced the listener’s (in my case, the health professional’s) perception of the narrator’s identity. Researching the narration of illness gave me a framework to reposition the stories I have heard over my working life, assisting in my meaning-making and enhancing my ability to re-create more authentically the illness experience in my writing.

The adult experiences of illness that I have witnessed regularly conformed to Arthur Frank’s assertion that illness is a disruption to an existing life and set narrative identity. The ill children I have observed were often not in that position. The extended typology is needed to capture children’s and adolescents’ voices; otherwise the illness experience will continue to be framed in literature by an assumption that its main emotional effect is a sudden disruption to normalcy.

Conclusion

Mapping the transformative texts that ‘fill the minds’ of readers requires purposeful interrogation and critical analysis. While enquiry into young adult literature can have many methodological alignments, I have focused on the textual analysis of illness stories using a narrative typology originally developed by sociologist Arthur Frank. By expanding Frank’s original classifications, the research project provides a framework for both the examination, and the creation, illness fictions; those texts that attempt to express the lived experience of young people with chronic illness.

The extended typology consists of five categories: the restitution, chaos and quest narrative types of Frank; and foundation and agentic narrative types developed from this research project. The inclusion of the latter gives voice to adolescent protagonists following an illness journey trajectory that does not replicate a general adult experience. From these classifications arises the protagonists’ narrative identity, the stories that they tell about themselves and how being ill has shaped them. By providing a typology for interrogating stories of adolescent illness experiences, readers and critics have been provided with a way of hearing the young and wounded storyteller’s call. Expanding Frank’s typology has also created a useful tool to guide the writing of illness fictions.