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  • Representing Chronic Disorders of Consciousness: The Problem of Voice in Allende’s Paula
Abstract

This article explores problems of voicelessness in Isabel Allende’s Paula (1995) through a focus on the story of Paula’s illness and subsequent death from porphyria in 1992. I argue that the language, categories and stories through which disorders of consciousness are constructed are central to ethical decision-making and shifting cultural understandings of these conditions. In Paula, Allende uses an experimental, hybrid narrative form that draws on illness narrative, magical realist novel, national history, letters, and memoir to challenge traditional depictions of “coma” and to create a new public space through which these issues of voicelessness can be addressed.

Isabel Allende’s Paula, published in 1995, poses a problem of voice. It does so through a hybrid narrative form that incorporates elements of illness narrative, autobiography, national history, magical realist novel, and testimony. In Paula, Allende tells the story of her daughter’s illness and ultimate death from a rare genetic disorder called porphyria. Much of the narrative is set during the year that Paula spent in a coma-like state as she was cared for by her mother, first in hospital in Madrid and then at Allende’s home in San Francisco. Writing in this “mysterious parenthesis,” as Paula lies suspended between life and death, Allende reflects on her own life story and its intersections with the wider metanarrative of twentieth-century Chilean history.1

In existing literary criticism on Allende, the figure of Paula herself is surprisingly absent: ironically, she is silenced in critical accounts of the text which bears her name. Instead, critics have often discussed Paula as a post-boom Latin American novel or a memoir of her mother, Isabel.2 The problems of voice, and voicelessness, function on a level of narrative and genre in Allende’s text but also raise important questions about medical care, end-of-life choices for patients and families dealing with conditions broadly termed “coma,” and the legal definitions and ethical arguments that structure debates about dying.

Approaching Paula from a medical humanities perspective helps to address this gap in criticism of the text but also to consider the wider significance of literary writing as a space in which the recently created medical category of “disorders of consciousness” can be explored through personal perspectives. More specifically, I argue here that Paula uses inventive narrative forms to explore the potential, and [End Page 133] the limits, of therapeutic modes of writing and their ability to give voice to a silenced patient.

Disorders of Consciousness and Voicelessness

In recent western medical contexts, diagnoses and prognoses for patients have been tied to shifts in the diagnostic criteria for “disorders of consciousness.” For example, it was not until 2002 that the “Vegetative State” (VS) was differentiated from the “Minimally Conscious State” (MCS).3 This distinction has implications for the provision of medical treatment and legal rights of patients: there have, for example, been cases in the United Kingdom where courts have authorized withdrawal of life-sustaining treatment from a patient defined as being in a permanent vegetative state, but the English courts have never yet authorized withdrawal from a patient in a minimally conscious state.4 The withdrawal of medical care is related to the specific classification; these categories raise complex philosophical questions about the point at which “death” occurs.5

Allende’s Paula highlights the ways in which language and voice are central to understandings of disorders of consciousness. It depicts Allende’s experience of caring intimately for her daughter and poses questions about Paula’s understanding and experience of pain. These questions are the subject of current and highly contested scientific research.6 Allende takes them up directly: “What goes through your thoughts? ... Nothing must make any sense to you. I know you hear because you flinch at the sound of metal on metal, but I don’t know whether you understand what it is. Do you want to live, Paula?”7 In this way, Allende, a best-selling author with sales figures of over thirty million books, brings to an international, non-clinical audience the practical and ethical complexities of constructing a voice for an individual who might flinch at loud noises, track an object across a room with her eyes, groan, cry, or even utter single words, but who cannot articulate her own wishes or story.

The complexities of constructing a patient’s voice are central to sociologist Arthur Frank’s work in The Wounded Storyteller (1995). Frank suggests that the “remission society” is a marker of “modernist medicine,” and writes:

The triumph of modernist medicine is to allow increasing numbers of people who would have been dead to enjoy this visa status, living [End Page 134] in the world of the healthy even if subject to expulsion. The problem for these people was that modernist medicine lacked a story appropriate to the experience it was setting in place.8

It is certainly the case that medical advances, particularly in emergency care and then in long-term treatments such as delivery of clinically assisted nutrition and hydration, mean that patients who would not previously have survived are now living on for decades in minimally conscious and vegetative states. Yet recent sociological data suggests that the “triumph of modernist medicine” Frank celebrates becomes, in certain cases of disorders of consciousness, what interviewed family members have called “a catastrophe constructed by modern medicine by funding, by legal frameworks.”9

In fictional narratives available in the public sphere, there is a tendency to use “coma” as a convenient plot device to allow a state of suspended animation before a miraculous awakening. For instance, Douglas Coupland’s Girlfriend in a Coma (1998) begins when the central character, Karen, falls into a coma-like state as a teenager. The novel tells the story of her group of friends as they come to terms with her absence and grow older. Upon awakening, seventeen years later, Karen retains the same teenage mind and character as before.

By contrast, interviews and memoirs written by loved ones and family members of those with disorders of consciousness have begun to allow a space in which the complex relationships between survival, best interests, and quality of life can be explored from personal and philosophical perspectives.10 In her text, Allende frames this tension between survival and quality of life through the form of a reported conversation between herself and her friend Juan:

“Paula doesn’t belong to you. You should not prolong her life artificially, but neither should you shorten it.”

“How far does ‘artificial’ go? Have you seen the hospital I have downstairs? I control every function of her body.”11

In this way, Allende takes up the nuanced medico-linguistic definitions of artificiality and of vegetative and minimally conscious states that are fundamental to ethical decision-making about end-of-life care. Her narrative reinforces the importance of focusing on the “remission society” as a social consequence of contemporary medical practices but also highlights the ethical, personal, and philosophical difficulties that this increased survival rate poses. [End Page 135]

Writing in the mid-1990s, Frank identified a lack of stories appropriate to modern medical contexts. He argues for a new era of patient-centered storytelling that is focused on asserting an “active voice”; giving “voice to the body”; and cultivating an authentic “voice ... [people] can recognize as their own.”12 While more recent scholarship in the field of narrative medicine has theorized, diversified, and complicated the process Frank advocates, scholars have only recently begun to consider the ethical and aesthetic challenges of recuperating a voice when conventional narration is not possible. G. Thomas Couser uses the term “vulnerable subjects” to name those who cannot speak for themselves because they are too ill, are mentally or intellectually unable, or are dead.13 Notions of “agency and self-determination” associated with autobiography, he argues, are complicated in such cases by the need for collaborative modes of writing.14 Rebecca Garden takes up Couser’s term to explore some of the ways in which their inability to voice their own views leaves these groups vulnerable to having their stories appropriated by others.15 Taking this critique a step further, Angela Woods challenges the dominant model in the medical humanities in which stories are told through an “agentic, authentic, autonomous storyteller” and calls into question the universalizing assumption that everyone shares “an innate ahistorical narrative identity.”16

As survival rates increase, western populations age, and medical technologies advance rapidly, this question of how to give voice to “vulnerable subjects” such as the intellectually disabled, people with advanced Alzheimer’s Disease, and those with catastrophic brain injuries becomes ever more pressing. By definition, patients with chronic disorders of consciousness cannot communicate by conventional means and they are unable to give their consent for treatment, or for clinical or sociological research. Narratives such as Paula highlight the need to tell intimate, highly personal stories of illness that do not fit with the model of the “autonomous storyteller,” and that refuse to conform to conventional scripts such as the quest, the battle, or the narrative of overcoming.17 Linda Martín Alcoff explores the “problem of speaking for others” as one that is embedded in the very structure of discursive practice; “the options available to us are socially constructed, and the practice we engage in cannot be understood as simply the result of autonomous individual choice.”18 For Alcoff, anxieties about speaking for socially disempowered, or “subaltern,” groups should not mean a retreat from the social responsibility to do so in certain situations: “The problem is not that for some speakers the danger of speaking for others does not arise, but that in some cases certain political effects can [End Page 136] be garnered in no other way.”19 These political debates about the need to ventriloquize the voice of another intersect with the understandable personal urge among some carers to tell stories of their loved ones. This complex interplay of voices represents a challenge to writers of memoir and fiction in aesthetic terms, on a level of language and form, as well as ethically and politically.

There is also a legal impetus to explore such stories. It arises from the fact that, in the absence of a legally binding advance directive, carers and families of those with disorders of consciousness are forced to take on the role of advocacy and construct an account of their loved one’s life and wishes. Such a story, in which loved ones necessarily speak for the individual, is then used as evidence in clinical and legal decision-making about future treatment.20 The story-as-evidence is constructed from texts such as diaries, letters, and remembered conversations. Partially fictionalized representations such as Allende’s Paula provide another wide-reaching public “voice” in this complex contemporary debate about medical advance directives. The process of constructing and telling stories in these cases is not only an act of retrospective memorialization after death; it can be central to ongoing processes of medical and legal decision-making about a patient’s life.

Genre and Authenticity

In its depiction of the everyday details of care, Paula offers a nuanced counter-narrative to stereotypical “Sleeping Beauty” images of “coma” found in other cultural representations.21 Like Allende’s Paula, Pedro Almovódar’s film Talk to Her (Hable Con Ella, 2002) depicts young female patients in a modern Spanish hospital. In Talk to Her, the vague category of “coma” provides a useful plot device: the two parallel storylines become intertwined when both female love interests end up in vegetative states in the hospital. The voicelessness of the young women adds to the dramatic tension and the unsettling unrequited desire felt by their male carers. The title of the film itself highlights the difficulty of communication and, as it progresses, Talk to Her explores the problematic assumption that the apparently unconscious women can understand conversations held in their presence. Ultimately, however, it is the body rather than a verbal testimony that bears witness to the rape of Alicia, one of the young women. Throughout their illnesses, the idealized figures of both women remain beautiful, toned, tanned, still, and, crucially, completely silent. At the end of the film, this rare [End Page 137] spectacle of patients with disorders of consciousness is removed from the visual frame: Lydia dies off-screen and, in an unlikely twist, Alicia awakens and begins her rehabilitation to take up her previous career as a dancer.

Allende’s text, by contrast, depicts the ongoing details and difficulties of everyday care. The narrator registers the dominant cultural myths and discourses around coma in her narration, referring to Paula’s “angelic expression” and her hope that her daughter will emerge from her “cocoon” as a miraculously transformed “butterfly.”22 But these myths coexist with a focus on the intricacies of physical care which are recorded in intimate, often discomforting detail:

Four times a day I force you to move every part of your body. I begin with your toes, one by one, and work upward.... I sit you up in bed and pound your back to clear your lungs; I moisten the harsh hole in your throat with drops of water.... I separate your fingers with pieces of sponge rubber and try to keep your head straight with a collar improvised from a travel neck pillow and adhesive tape.23

The layering of clauses here reflects the detailed focus on the routines of caring for each part of the body in isolation with rigorous, slow-paced intensity. The physicality of Paula’s voiceless condition is reinforced by the description of the “harsh hole” in her throat. At one point, Allende suggests that this highly physicalized realism is the only form in which she can write about her daughter’s illness: “Ever since Paula became ill, a dark curtain has separated me from the fantasy world in which I used to move so freely; reality has become intractable.”24

Yet even as she invokes this mimetic, “intractable” realism, the multivocal form of the text itself calls into question the authority of Allende’s position as a reliable witness or transcriber of experience. In the very next line, she reminds us that: “Today’s experiences are tomorrow’s recollections.”25 In this self-reflexive aside, Allende highlights the coexistence of different time frames in the text. Although the start of the book has a striking present-tense immediacy, addressed to Paula and set at her bedside in the hospital, this narrative is intercut with episodes from Chilean history and Allende’s own personal family “legend.”26 In fact, the text emerges as a “metapathography”: an account of illness that incorporates the process of writing into its own story.27 Although Allende wrote the text retrospectively in the year after Paula died, she has carefully crafted the structure to create a [End Page 138] sense of urgency, alongside a slower-paced, wide-ranging familial and national history. At once writer, protagonist, and narrator of the text, she frequently reminds readers of the unstable, transformative nature of the processes of remembering and writing: “Don’t ask me to be precise, because inevitably errors will creep in. I have forgotten a lot, and some of the facts are twisted.”28

Sylvia Molloy suggests that Spanish-American autobiography and life writing are characterized by a particular “documentary imperative” and a “strong testimonial stance.”29 Paula responds to this documentary imperative in two senses: Allende records the details of Paula’s illness in painstaking detail, from the “humming of the respirator” in the hospital ward to the “irritating precision” of clinical routines.30 This personal crisis of Paula’s illness is set against the backdrop of the historical trauma of the coup in which President Salvador Allende, Isabel’s second cousin once removed, was ousted and killed as the Pinochet regime took power in 1973. The personal memories of Paula and the collective memories of the Chilean nation, frozen in crisis, are connected through the real-life figure of Omaira Sánchez. Sánchez, a young girl who was trapped in a landslide following a volcanic eruption in Columbia in 1985, is the subject of Allende’s earlier short story, “And of Clay We Are Created.”31 When she returns to the shocking story in Paula, this well-documented narrative from the public sphere becomes a powerful metaphor for Paula’s private state of helpless physical imprisonment: “My daughter was trapped in her body, as the girl had been trapped in the mud.”32 In this way, Allende extends her lifelong project of recuperative historical writing, in which she uses her fiction to fight against censorship and imagine perspectives of “the poor, the repressed ... the distressed.... those who don’t have a voice or those who have been silenced,” connecting it to her own personal struggle to give voice to her daughter.33

This realist “documentary imperative,” viewed as a marker of authenticity, is also often privileged in analyses of illness narratives.34 Authenticity has, in this context, been connected to a cross-cultural “truth” that remains stable across time and is seen to stand outside of the social and cultural powers that shape discourse.35 For Allende, by contrast, the personal is fundamentally intertwined with the political; the “truth” of Paula’s story is historically contingent and always shifting. The hybrid form of the text itself challenges its own authenticity, incorporating popular cultural genres of soap opera, romance or melodrama alongside historical critique and densely intertextual references to celebrated literary writers such as Gabriel García Márquez and Pablo [End Page 139] Neruda. A reference to Márquez’s magical realist short story, “A Very Old Man with Enormous Wings,” for example, prefigures Allende’s dream about Paula flying away and initiates a subtle magical realist thread in the text.36

These myths and stories, Allende suggests, do not detract from the authority of her depiction of her daughter’s illness, but are instead an authentic part of the fabric of her own everyday experience as a mother and a carer. The coexistence of fact and fiction in the text becomes an animating force, inviting creative imagination and suggesting a source of hope for the future. Addressing Paula directly, Allende suggests that they should “piece together the broken fragments of your past; better yet, we can invent memories that fit with your fantasies.”37 These stories are, for Allende as for Joan Didion in her The Year of Magical Thinking (2005), necessary fictions in coping with the absent presence of a loved one. Just as Didion famously insisted that “we tell ourselves stories in order to live,” Allende herself seems to take after her character, Eva Luna, as one who “invents her stories—her life—to survive the reality of her existence.”38 In another carer’s narrative, A Very Easy Death (1964), Simone de Beauvoir echoes this sense in which fiction is woven into the experience of everyday life while caring for a loved one during illness. Ideas of artificiality, authenticity, or straightforward realism are fundamentally destabilized: “When I crossed Paris in a taxi I saw nothing more than a stage with extras walking on it. My real life took place at her side ... I had the feeling of play acting ... of telling a white lie.”39

Therapeutic Writing

Paula can be seen as a complex response to a clinical setting in which both Allende and her daughter are denied a voice. During a visit from a professor with a group of medical students, Allende suggests that Paula is examined “as if she were already a cadaver,” spoken about as if she could not hear.40 Throughout Paula, Allende struggles against her own overwhelming sense of isolation, which she figures as an inability to communicate verbally: “I am forced to inaction and silence ... if I scream, no one hears.”41 Yet, through the process of writing, not only does she try to make known her own personal experiences of being a mother and a carer, but Allende also attempts to create an alternative space in which the voice of her daughter can be heard. Paula has a dialogic form: the first section of the text is [End Page 140] framed as a spoken conversation. The opening line, “Listen, Paula,” initiates a strong sense of intimacy and a call to active engagement, underscored by Allende’s frequent prompts to her daughter to look at a photograph or listen hard to the family history so that she will know what has happened when she wakes up.42

The second part of Paula marks a significant geographical and temporal break: Part One ends in May 1991 in Madrid and Part Two begins several weeks later, the setting changed to Allende’s home in California. The second part also marks a linguistic break in terms of the implied addressee: Allende shifts from the familiar second-person intimacy of “tú” used throughout Part One to the more distant third person of “ella” in Part Two. This shift in the mode of address in Paula has been seen by some critics as a moment at which Allende retreats inwards, into herself.43 The jarring shift in narrative voice certainly seems to mark a level of acceptance that Paula “is not going to wake up”; in a moment of metatextual commentary Allende reflects that “these are pages that Paula will never read.”44 Yet, in the next line she challenges the certainty and authority of this judgment through her own internal dialogue: “No! Why do I repeat what others say if I don’t really believe it?” Rather than turning into herself, the use of the third person means that Allende turns outward to address the reader. Paradoxically, this turn away from a direct conversation with Paula as addressee allows a greater space in the narrative for Paula’s voice to come through.

In Part Two of the book, Allende uses devices such as dream sequences and the discovery of a letter to animate Paula, and allow her to speak her own wishes. In her dream, Paula’s words directly echo the opening of the text: “Listen mama....”45 The letter that Paula wrote while healthy and happy on her honeymoon, in which she states that she would not wish to remain “trapped” in her body in the event of illness, is copied into the text in its entirety.46 Moreover, in an interview that follows the main text of Paula in the 2008 Harper edition, Allende has suggested that she also incorporated into the narrative whole paragraphs from love letters between Paula and her husband, Ernesto. This selective borrowing from a variety of different letters, which goes unacknowledged in the main body of the text, returns readers to the ethical problems, as well as the imaginative possibilities, of “speaking for” vulnerable subjects. Allende’s desire to recuperate the voice of her daughter is intricately bound up with the implicit power dynamic of her relationship to Paula as her mother, but also as the author of a text that blurs the line between fiction and [End Page 141] memoir. The ongoing significance of letters in Allende’s career, cited as the trigger for writing her first novel, The House of Spirits (1982), has particular pertinence in Paula, which, she has later revealed, was retrospectively constructed from the 190 frantic and despairing letters that Allende wrote to her own mother during her daughter’s illness.

The multiplicity of voices and genres in Paula are not integrated to create a single authoritative or cohesive narrative. The question of authorship is complicated by the gaps between Allende’s past and present selves, as well as by the ways in which she insists that both her mother and Paula are, in a sense, co-writers of the narrative. The process of telling her story, Allende suggests, has huge therapeutic significance for herself. In an interview included in the 2008 Harper edition, she suggests that “I wrote the [book] as a kind of catharsis.... I wrote it as a form of salvation: in the process of remembering the past, my soul was healed.”47 Allende’s attentiveness, not only to her own stories but also to the stories of her mother as a carer and her daughter as a patient, suggests her commitment to exploring forms of “narrative competence” as a direct response to illness. The urge to tell stories is irrepressible in Paula and the struggle to voice a patient-centered version of events becomes the main action of the narrative. Peterkin and Prettyman’s notion of “autobiographical competence,” as an extension of Charon’s “narrative competence,” is particularly relevant to Allende’s Paula given this focus on the process of writing itself: autobiographical competence “extends beyond its application in clinical contexts. Use of the term ... refers to autobiographical competence on the part of patients or clients who write as part of their self-reflection, healing or recovery.”48 Though neither a patient nor a clinician, Allende focuses on the personal value of recording experiences of illness: “Writing is a matter of survival: if I don’t write I forget, and if I forget it is as if I have not lived.”49

This commitment to narrative cannot be equated with a straightforward attempt to impose a sense of coherence onto the story of Paula or the narrator herself. For Peterkin and Prettyman, narrative competence is demonstrated through an ability to organize and tell coherent stories through the “integration of disjointed traumatic memories.”50 Allende’s view of narrative is much more radical and complex. Paula does follow a clear timescale, from December 1991 to Christmas 1992, ending with the death of Allende’s daughter. However, far from the traditional view of the “principle [sic] comforts of narrative—continuity, closure and containment,” Allende does not integrate the various past and present voices and genres into a single coherent version of events.51 Paula’s [End Page 142] own experience of her minimally conscious state remains the absence at the heart of the narrative, an absence which Allende cannot fill through her narration. She repeatedly returns to images of dissolution rather than resolution: “My past has little meaning; I can see no order to it, no clarity, no purpose, or path, only a blind journey guided by instinct and detours caused by events beyond my control.”52 Allende’s image specifically resists normative scripts of a linear restitution narrative or triumphant journey towards self-knowledge. Yet Allende’s reflective, retrospectively framed account also distances her narration from the first-person immediacy of speaking about oneself “without mediation,” as Frank describes the “chaos narrative.”53

After her death, Paula is not removed from the narrative frame. Instead, she remains an ongoing voice in Allende’s writing, inspiring the period of “gestation” in which Allende wrote both Paula and her next novel, The Sum of Our Days.54 Published in 2008, The Sum of Our Days returns readers to the dialogic opening of Paula, as it begins with a letter from Allende to her daughter.

Conclusion

This sense of an ongoing dialogue, and a multivocal response to disorders of consciousness, extends to the reception of Paula. Following the book’s publication, Allende received and replied to first hundreds and then thousands of letters from readers. This meant that she became engaged in dialogues with a huge range of different groups and individuals from around the world. In a text added to the 2008 Harper edition, she describes the range of communication she received: “From doctors who had changed their relations with patients, and said they would no longer look at them as cases but as people with a history and a family; from terminally ill patients who had found comfort in their last days; from others who suffered from porphyria or similar conditions.”55 Allende spent two years responding to each of these letters personally and collected them together for publication in Cartas a Paula (Letters to Paula), published in 1997.

This powerful afterlife suggests the pedagogical potential of Paula as a text that engages closely with a very modern and relatively unknown set of medical and ethical dilemmas around disorders of consciousness, a topic initially deemed by Allende’s agent as too frightening to be popular or indeed marketable. Narrative competence is an important part of this: Allende searches for experimental narrative [End Page 143] forms that are both personally and historically situated, but can also find a way of communicating complex and difficult experiences of illness through a variety of different voices. Allende’s refusal to integrate these diverse voices into a coherent linear narrative chimes with de Beauvoir’s memoir on her mother’s illness in which she insists that: “It is useless to try to integrate life and death and to behave rationally in the presence of something that is not rational: each must manage as well as he can in the tumult of his feelings.”56

In recording the tumult of her feelings, Allende raises important questions about the challenges relating to those suffering from disorders of consciousness and their families and carers. As a text, Paula is testament to the need to consider these challenges from personal, historical, imaginative, and philosophical, as well as biomedical, perspectives. As Allende explores the therapeutic potential of writing she simultaneously resists a view of narrative as necessarily coherent or self-enclosed, echoing de Beauvoir’s resistance to the over-use of rationality or the easy integration of death into life, or of the past into the present. The final lines of Paula bring together the multivocal nature of the text, the absent presence of her daughter and Allende’s ongoing commitment to dialogue: “As I dissolved, I had the revelation that the void was filled with everything the universe holds. Nothing and everything, at once.... I am Paula and I am also Isabel, I am nothing and all other things in this life and other lives, immortal.”57

Alice Hall

Alice Hall is Lecturer in Contemporary and Global Literature in the Department of English and Related Literature at the University of York, UK. She holds a PhD from the University of Cambridge and has taught at Université Paris-Diderot, La Sorbonne Nouvelle, and Cambridge. She is the author of Disability and Modern Fiction: Faulkner, Morrison, Coetzee and the Nobel Prize for Literature (2012) and of articles on autobiographical fiction, memory, and medical humanities.

Notes

I would like to thank Professors Celia Kitzinger and Jenny Kitzinger for their contributions to this paper. The work is part-funded by the Wellcome Trust [ref: 097829] through the Centre for Chronic Diseases and Disorders (C2D2) at the University of York.

2. See Lagos, “Female Voices”; Levine, “Defying the Pillar of Salt”; Perricone, “Genre and Metarealism”; Jolley, “Mother-Daughter Feminism.”

3. See American Congress of Rehabilitation Medicine, “Recommendations”; Wade and Johnston, “Permanent Vegetative State”; Giacino et al.,”The Minimally Conscious State.”

4. See Howe, “Management of Patients in Persistent Vegetative State.”

5. Kitzinger and Kitzinger, “Window of Opportunity,” 1.

6. See Bernat, “Natural History”; Vogel et al., “Can Mental Imagery”; Jox, “End-of-Life Decision-Making.”

9. This quotation is drawn from a database of interviews with family members of people in chronic disorders of consciousness, collected by Celia Kitzinger [End Page 144] and Jenny Kitzinger and shared with other members of the York-Cardiff Chronic Disorders of Consciousness (CDoC) Research Group. For further details see Kitzinger and Kitzinger, “Withdrawing Artificial Nutrition and Hydration.”

10. See Crane, Aidan’s Way.

13. See Couser, Vulnerable Subjects.

15. See Garden, “Telling Stories About Illness and Disability.”

17. Frank, The Wounded Storyteller; Sontag, Illness as Metaphor.

19. Ibid., For an account of the “subaltern,” see Spivak, “Can the Subaltern Speak?”, 66.

20. See “Mental Capacity Act.”

21. See for instance Wijdicks and Wijdicks, “The Portrayal of Coma,” 1300–303.

23. Ibid., 156.

24. Ibid., 260.

25. Ibid.

26. Ibid., 3.

29. Molloy, At Face Value, 8.

31. Allende and Peden, The Stories of Eva Luna.

33. Allende and Rodden, Conversations with Isabel Allende, x.

34. Shapiro, “Illness Narratives”; Jurecic, Illness as Narrative.

37. Ibid., 8.

38. Marketta, “Isabel Allende,” 185.

41. Ibid., 162.

42. Ibid., 3.

45. Ibid., 515.

46. Ibid., 321.

47. Ibid., x.

48. See Peterkin and Prettyman, “Finding and Voice”; Charon, “What Narrative Competence is For.”

49. Allende and Rodden, Conversations, x.

50. Peterkin and Prettyman, “Finding a Voice,” 82.

55. Ibid., xii.

57. Allende, Paula, 333. [End Page 145]

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Additional Information

ISSN
1080-6571
Print ISSN
0278-9671
Pages
133-147
Launched on MUSE
2014-06-24
Open Access
No
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