Medical students' first-person narratives of a patient's story of AIDS

Soc. Sci. Med. Vol. 40, No. I, pp. 67-76, 1995

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MEDICAL STUDENTS' FIRST-PERSON NARRATIVES OF A PATIENT'S STORY OF AIDS PATRICIA A. MARSHALL' and J. PAUL O'KEEFE2 ~Medical Humanities Program and 2Department of Medicine, Loyola University Stritch School of Medicine, 2160 South First Avenue, Maywood, IL 60153, U.S.A. Abstract--Fourth year U.S. medical students' first-person narratives of a patient's experience of AIDS are analyzed using a conceptual framework that builds on the interactive model of narrative critique. Relational and affective convergence and, conversely, relational and affective dissonance, reveal imaginative reconstructions of emotional and interactional themes depicted in the patient's original story. Attention is focused on representations of isolation, contamination, shame and fear. Elements of indeterminacy and openness in the patient's description of his experience with AIDS provided students with opportunities to create an imagined response to HIV infection in their own narratives. The narratives describe social interaction that is tainted and constrained by the presence of infection and its associated stigma. The emotional content of the student narratives portrays an affective landscape that resonates, elaborates and, in some cases, distorts the feelings expressed in the patient's story. The narratives call attention to the way in which individual meanings are externalized, objectified and projected onto a socially and morally salient 'other'. Using the first-person narrative approach in the seminar on AIDS proved to be an effective method of sensitizing students to the experience of living with HIV infection. The challenge for medical educators lies in creating opportunities for students to develop increased empathy toward individuals with AIDS. Key words--AIDS, narrative, medical education

Now there is nothing in life that serves as a narrative beginning; memory is lost in the hazes of childhood ... As for my death, it will finally be recounted only in the stories of those who survive me. I am always moving toward my death, and this prevents me from ever grasping it as a narrative end [1, p. 160].

ing in an area of very low prevalence [6--9]. Fear of contagion among medical students [10-14], misconceptions about HIV infection, and a reluctance to train in a hospital or a specialty with a high percentage of A I D S patients [5] underscore the need for education about A I D S in medical schools. Investigators [15-18] have repeatedly called for activities that promote contact with A I D S patients and courses that address negative and prejudicial attitudes towards persons with AIDS. To date, efforts to provide HIV curriculum in U.S. medical training have been inconsistent. Teaching efforts are often limited to the biology and epidemiology of H u m a n Immunodeficiency Virus and opportunities to discuss underlying fears about A I D S may be omitted. Although competition for time in an overburdened medical curriculum is an important consideration in developing educational programs on A I D S and HIV-infection, the knowledge and empathy gained by students suggest that the effort is worthwhile

I'm just saying that we all believe in something. You may believe in eternal life ... you may believe that this life is it and once you're dead it's all o v e r . . . I believe that I'm going to spend eternity in heaven and I believe that God's healing hand is on me and that you, ladies and gentlemen, are going to hear my name mentioned again.., when I am totally set free from this disease [AIDS patient interviewed by medical students, 1989]. The escalation of the A I D S pandemic has raised concerns among U.S. medical educators about appropriate and effective medical training on HIVinfection. Health professionals are continually challenged to provide adequate and compassionate treatment to the growing number of individuals infected with the A I D S virus. Yet, studies have shown that some physicians and other practitioners are reluctant to treat A I D S patients [2--4] and there are indications that U.S. residents are choosing medical specialties less likely to expose them to the virus [5]. Other surveys reflect a growing desire to avoid the problem by broad scale testing of patients or practic-

[19, 20]. In this paper, we present the results of using a narrative technique in a seminar on A I D S for fourth year U.S. medical students. The seminar was conducted in October of 1989. It was attended by 13 students in partial fulfillment of their medical 67

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humanities requirements.* The seminar met for 2 hr on a weekly basis, for a period of four weeks. The purpose of this course was to increase the students' knowledge about HIV-infection and to provide them with the opportunity to discuss issues such as fear of AIDS, the stigmatization of AIDS patients, and the physicians' duty to treat.t At the second session, a patient with AIDS was invited to talk with the class about his infection and subsequent illness. Students were asked to write a short narrative, not more than five pages long, based on the patient's description of his experinece and their group interview. They were requested to write the narrative in the first person, as if they were actually the patient talking [21]. During the last session, students read and discussed their first person narratives of the patient interview. Nine of the thirteen students wrote their essays based on the patient who described his experiences with the class; four of the students wrote first person essays based on their interactions with patients they had met during their medical rotations. Material presented in this paper will be limited to the patient's narrative and the student essays representing him. The class session was audiotaped and transcribed. The patient with AIDS gave us permission to use material from his 'story' and students have given permission to use direct quotes from their essays. In this paper, the patient's name has been changed to 'Joe' in order to protect his confidentiality. THE NARRATIVE APPROACH IN MEDICINE

The relevance of narrative for medicine has received increasing attention in recent years. Brody [22], for example, explores the life altering capability of illness and the moral relevance of stories of sickness. Kleinman [23] examines the construction of illness narratives by physicians and patients with particular emphasis on sociocultural context and meaning. Parables and narratives are used by Reich [24] to exemplify moral conflicts in the medical arena. Others [25-27] have investigated narrative aspects of *We have held the seminar on AIDS every year since 1989. Each year someone with AIDS is invited to tell their story to the class. The individuals have come from different backgrounds (e.g. a woman who was an IV drug user, married and with two children; a woman in her early twenties who became HIV-infected as a teenager). Students are asked to write the first person narratives based on the group interview and share them with the class during the last session. Our evaluations of this technique have been consistently positive. tThe seminar was sponsored by the Medical Humanities Program at Loyola University Striteh School of Medicine. In partial fulfillment of their medica; humanities requirements, students elect two seminars which are offered on a range of subjects, including literature and medicine, the history of medicine, health law, and medical ethics. The seminars meet for two hours on a weekly basis; each seminar last four weeks. The number of students is normally limited to twelve.

the medical record, viewing it as an interpretative 'text' that articulates the multiple voices of the patient and the health care team. Hunter [28, p. 209] suggests that narrative construction is "the principle way of knowing in medicine". Indeed, a medical encounter normally begins with a narrative act. The informative power of narrative as a clinical tool is illustrated explicitly in the process of taking a patient's history. When the physician asks the question, "Can you tell me why you are here today?", the patient is invited to tell a story about her illness [29]. Literary devises such as plot, intentionality and character are evident both in the patient's description of her illness and the physician's retelling of it in the medical chart or at a case presentation. Thus, the doctor and the patient become dialogically engaged in the act of 'reading' and 'writing' the medical 'text' [26, 30]. Bruner [31, 32] has argued extensively that life experiences and memories are organized primarily in narrative form which is culturally transmitted and culturally defined. In his essay on the narrative construction of reality, Bruner [33, pp. 9-11] discusses two contextual domains that influence narrative interpretation: intention attribution, "Why a story is told how and when it is, and interpreted as it is by interlocutors caught in different intentional stances themselves," and the background knowledge, "of both the storyteller and the listener, and how each interprets the background knowledge of the other." Bruner [33, p. 13] suggests that sensitivity to these contextual features make narrative discourse in everyday life a valuable tool for cultural mediation and negotiation. Polanyi [34, p. 217], like Bruner, argues that the substance of a story is culturally constrained and that, " . . . the point of the story is not necessarily fixed, but rather may change in the course of the narration and surrounding conversation as speaker and audience negotiate for what the story will be agreed upon to have been about." Within the context of illness narratives, the substantive and symbolic language of the story teller and the listener construct a cultural landscape of personal meaning and underlying social ideology [35, 36] that is both fluid and transformative. In discussing the complex relationship between narrator and audience, Brody [22, p. 16] draws on Bruner's [32, p. 25] recognition of the importance of the listener in reconstructing the story: Bruner takes the reciprocal nature of storytelling one step further by arguing that the reader or listener is necessarily involved in the narrative. 'The story,' so far as the listener is concerned, is not the actual text--the words uttered by the speaker--but rather the virtual text that the listener contructs for himself according to what the utterance means to him; and it is the virtual text that the listener will recount when asked to repeat 'the story' at a later time. 'That is what is at the core of literary narrative as a speech act: an utterance or text whose intention is to initiate and guide a search for meaning among a spectrum of possible meanings. Consequently, the symbolic meaning attached to

Medical students' first-person narratives of a patient's story of AIDS illness and articulated in all clinical transactions is intrinsically tied to imagination, translation and narrative expression. Reader response theorists have focused a t t e n t i o n on the phenomenological act of discerning a story as it unfolds in what Ricoeur [37] refers to as 'narrative time.' The appropriation of the story by the audience requires participation and engagement with the narrator. Thus, as Iser [38] argues, this dynamic and interactive quality enlists the reader in the inherently creative and imaginative act of determining the potential meanings of a text. In their examination of epilepsy narratives in a Turkish village, Good and Good [39] illustrate that the construction of illness is a fundamentally intersubjective process engendered by interpretive practices. Epilepsy is shown to be a central organizing theme in individuals' lives. Good and Good's [39] careful exploration of 'subjectivizing' [32, p. 26] elements in the epilepsy narratives--their indeterminancy and openness to multiple readings and outcomes--suggests that the story tellers were absorbed in an ongoing process of making sense of their illness. Good and Good [39] argue persuasively that the epilepsy narratives contain subjunctivizing elements not only because of their narrative structure and their elicitation of an imaginative response, but also because the narrator is "in the midst" of telling their story. Thus, the narrators were actively involved in creating possible worlds in which healing remained a conceivable outcome. In her unique application of reader response theory to medical education, Charon [21] encourages students to record patients' stories of illness using the first person. Several important goals are achieved using the first-person narrative technique in medical training. First, a context is created for close identification with the personal character and concerns of the patient. The signifiers of 'him/her' change to 'I/me,' and the emotional distance between the patient and the student is reduced. Second, as Charon notes, the 'writer' of the patient's story has a stronger investment in the patient's future and the outcome of medical care. Finally, the use of the first-person narrative technique challenges students to ask questions and raise issues that might not have been addressed.

THE PATIENT'S STORY After being introduced to the students seated around the large table in the conference room where the course was held, Joe was invited to 'share his story.' Joe began his narrative at the biographical moment of learning he had tested positive for HIV: I was first diagnosed in September of 1987 with the HIV infection. I was living in Las Vegas at the time. The reason I got tested is because I was dating a young lady and she was really serious about marriage and every time we would walk

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by a chapel in Las Vegas, of which there is a lot of, she was tugging at my arm ... I knew that I was at risk ... prior to .., 1982 because at that time I became a Born Again Christian and I left that homosexual life style. After learning the test results, Joe was unable to discuss his concerns about HIV/AIDS with anyone, " . . . there was a period of about fivc months that I had no one to talk to about it." Wanting verification, the students asked, "Wasn't there anybody you talked to? .... Nobody, nobody," he said, "I talked to my cat and, you know, you don't get too much response." At the health department where he was tested, individuals received counseling that was limited to information on safe sex practices. "I was going bonkers . . . , " Joe said. He felt as if he, " . . . had been given a death sentence which for me not knowing that much about AIDS, when they said I was HIV positive, you know, I thought I was going to die in a year or two. I really didn't know." At the end of several months of emotional and social isolation, Joe became involved as a volunteer coordinator with a support group for persons with AIDS of Nevada. He said that the AIDS clinic then became his "primary focus." Eventually, Joe began having cramps in his legs and was told by his physician that he needed to cut back on his hours at work, When asked by his supervisor why it was necessary to work fewer hours, Joe told him he had cancer, "It is easier to say I got cancer, than it is to say I have AIDS." Later, Joe experienced guilt, "about telling him a lie," and he went back to his supervisor to explain that he had AIDS. Joe had not expected his employers to be responsive to him, but he said that they were supportive and allowed him to change his work schedule. Joe experienced difficulties with his girlfriend after he tested positive for HIV and they ended their relationship without her knowing. He left Nevada in 1988 and moved to Oklahoma, to attend Bible school for approximately a year. When he began to have recurring headaches that prevented him from attending school and work, he moved to Chicago. At this point in the narrative, Joe described his hospitalization and his subsequent need to share his diagnosis of AIDS with his church community: So, on December 26th I had one of those attacks, or whatever it was with my head... I didn't want to deal with those headaches anymore, I was just fit to be tied.., they diagnosed me as having toxoplasmosis ... when I got out of the hospital I was on treatment.., taking medications and everything and the Lord was dealing with me to he open with my Church, because I needed their prayers. At that time, I was very very sick and I needed their prayers. So in front of the church from the pulpit... I shared with them my diagnosis of A I D S . . . and asked for their prayers and that the elders lay hands on me and anoint me with oil and I believe God did heal me. This event marked a turning point in JoCs experience of himself as being someone with A I D S - simultaneously 'sick' and 'healed.' Members of Joe's church invited him to come to a prayer group:

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I went to their home and as I walked into their basement I felt the presence of the Lord there... He touched me at that time because up to that point I had absolutely no appetite whatsoever. I was losing weight, I would eat three or four bites of food.., and I just couldn't take any more food. So when they prayed for me, instantly, within that hour I went upstairs and I've been eating like crazy ever since and to me that was a sign from the Lord that He had touched me. Joe's belief that he had been healed prompted him to request another test for HIV. When the Western blot came back positive, Joe said he was unconcerned, " . . . I believe that God's healing hand is upon me and that He is using Dr O'Keefe and the people h e r e . . , to heal me, to touch me and if nothing else, His sustaining hand is upon me because I feel great and the symptoms are gone . . . " When a student asked, "What will happen if you get sick again?," Joe said, ' T l l start all over again . . . you know, I don't live by sights. I don't live by the fact that test says I'm positive. I live by the fact that God says that He is a healer . . . that I could be healed and that's what I believe and that's where my faith lies . . . I pray that a cure comes quickly." Joe's story is about transformation and transcendence. At the time he told his narrative, he was fully engaged in a quest for spiritual and physical redemption. As with Good and Good's [39] epilepsy narratives, the indeterminacy of Joe's narrative, its 'subjunctivity,' suggests unknown, but not unknowable, possibilities for healing. The future is an imagined world of potential change and the temporal horizon extends into infinity, as Joe reminds his audience, "I believe that I'm going to spend eternity in heaven . . . when I am totally set free from this disease." Joe died in 1990.

THE STUDENT NARRATIVES

A key aspect of the first-person narrative is that it provides the opportunity for a juxtaposition of two points of reference for interpreting a person's experience with AIDS. First, the patient tells his story. He speaks for and about himself in his choice of metaphors, context, events, explanations for events, information expressed and information withheld. The narrative construction is his own and through it he informs the audience about the way in which he has subjectively internalized and socially externalized the meaning of AIDS. The student narratives echo the patient's voice and mirror his concerns; they also tell us something about what is important, what is culturally valuable and salient for the student. Thus, the students add to the patient's interpretation their own beliefs about the meaning of AIDS. In our analysis of the student's first-person narratives, we use a conceptual framework that builds on the interactive model of narrative critique. We are

interested in exploring what we call relational convergence~relational dissonance and affective convergence/ affective dissonance. In our use of the term relational convergence, we are referring to the mirroring that occurs between the patient's and students' representation of social relationships in their narratives. In relational convergence, the interactional world portrayed by the patient is literally or symbolically replicated in the students' reconfiguration of the narrative. We use the term relational dissonance to refer to divergent constructions of the social world described by the patient and the students. In relational dissonance, the 'reader' of the text imagines a social interaction in which characters are attributed with intentionality and background knowledge that did not exist (literally or metaphorically) in the original story. In this case, the recreation suggests a story in opposition to the one first told, rather than, as is the case with relational convergence, a story that compliments and is compatible with the earlier construction of plot, character definition, and intentionality. Similar to our formulation of relational convergence, we use the term affective convergence to denote the likeness between patient and students' constructions of emotions and feelings in the narratives on AIDS. Affective dissonance is analogous to relational dissonance in that it suggests a fundamental reconfiguration of the sentiments--and beliefs about their source and intentionality--expressed by the patient in the student narratives. Relational and affective convergence or dissonance illustrate the 'subjunctivizing' elements of narrative in that alternative 'readings' of the text produce imaginative reconstructions of the interactional and emotional themes found in the original story. The relational content and the emotion superimposed by the students on the patient's story of AIDS may approximate that expressed in the patient's narrative, and the recreation may also reflect their understanding and beliefs about the social and effective experience of AIDS. In this paper, we concentrate on the students' narrative constructions of isolation, contamination, shame and fear. We do this for two reasons. First, alienation, beliefs about contagion, and anxieties associated with being HIV-infected, are defining characteristics of the social and affective configuration of HIV/AIDS. Second, these themes are mentioned repeatedly in the student narratives. It is important to recognize, however, that other themes are equally important. For example, in our analysis, we do not explore themes representing social support or coping strategies. Joe's strong commitment to his church, his belief in God as a major source of strength in his life, and the compassionate response of family and friends---these thematic elements are represented in Joe's story and the students' rendition of it. A thorough discussion of these elements, however, is beyond the scope of this paper.

Medical students' first-person narratives of a patient's story of AIDS Relational convergence and dissonance In the domain of social relationships, the student narratives emphasize two themes. The first theme depicts an interactional environment of isolation. The second, and related theme concerns the issue of contamination. Drawing on Joe's description of learning he was HIV-infected and his expressed concerns about transmitting the virus, the student narratives construct a portrait of social interactions that is tainted and constrained by the presence of infection and its associated stigma. Each of these themes are discussed below. Isolation• Relational convergence is illustrated by the students in their narrative constructions of personal and social alienation. When Joe learned that he tested positive for HIV, he said, "I really didn't feel I could talk to anyone about it because it was not like cancer, you can talk about cancer, but AIDS is a venereal disease . . . and it's difficult to talk to people when you first find out and everything." Mimicking Joe's account, the students represent his social world as diminished and confined. They describe his interactional life in terms of what is missing--his lack of communication with others, the absence of social connectedness. One student suggests that, "Ties were severed." Another student said, "I really need to talk to someone . . . I need to share my despair." Indicative of "being in the subjunctive mode" [32, p. 25], and thus open to alternate 'readings' of Joe's story, the imaginative response of the students in some cases stimulated an expanded vocabulary of experience, which was often expressed dramatically. In these instances, relational convergence is not depicted literally, but rather symbolically. The students built on what Joe actually said, embellishing their own story with the projected emotional force of social isolation. For example, one student articulates an intensity not expressed by Joe, but certainly implied in his narrative, "Over the next five months, the loneliness was unrelenting, engulfing... I became reclusive, withdrawing from even by closest of friends and more importantly, my church . . . " In depiciting Joe's isolated condition, another student describes the emotional barriers existing between Joe and his girlfriend that were insinuated but not confirmed, "I wanted so much to tell her . . . but I could not . . . . Finally, after begging me to give her a clue . . . she screamed at me to open up and pounded her fists on my chest as if it beat down the doors which now stood before my heart." Relational convergence is also exemplified in the students' references to Joe's cat. When asked by the students if he had talked with anybody after learning he was HIV-infected, Joe said, "Nobody, nobody. I talked to my cat and you know, you don't get too much response•" While several students refer directly to the cat in their narratives, as the three examples below illustrate, the students append the reference with expressions of profound loneliness and a cornSSM 40/I--F

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pelling need to communicate with others: " F o r months I became withdrawn, my apartment became my world, my cat my only friend; . . . . I now feel completely isolated and alone. My only confidant being my cat. But my cat cannot answer my questions; . . . . For days now I haven't been able to eat, sleep or go to work. I haven't been able to tell anyone No one will u n d e r s t a n d . . . At least I have my cat, she is such a good listener... I need someone to talk to . . . I want to tell someone everything. I want someone's love and understanding . . . I am really all alone." Both relational convergence and dissonance are found in the students' depictions of Joe's relationships with his family. For example, when asked, "What did you think (your family) would say?", Joe replied, "Well, I thought, there's my sister . . . who l've been real close to over the years. From the conversations I've had with her regarding AIDS she's liable to tell me not to come back into her home." Exemplifying relational convergence with Joe's description of what he anticipated his sister's response would be, a student imagines a nearly identical incident, "I know that my own sister-in-law wouldn't even let me in the house if she knew I had AIDS." Although Joe expected his sister would be upset when she found out he was HIV positive, he described her reaction in a very different way, "I told my sister while I was out in Las Vegas. She was the first one I talked to . . . after four and a half months . . . I did break down and started to weep and shared with her what I had been going through and she was real supportive of me but there are people within my family that I have not shared with because I feel that they would not be able to handle it in a positive way." Joe did not mention the individuals in his family who might be unsupportive. In fact, in his narrative, Joe commented on the overall acceptance he experienced from others, "I haven't had anybody reject me because of this disease and I give God the glory for that because I have seen people with this disease, their family departs from them, they can lose their jobs. It can be really devastating, and I haven't had anything like that. Nobody has rejected me." The indeterminate and somewhat ambiguous nature of Joe's representation of acceptance and rejection allows for several multiple interpretations. One student, projecting the imagined response of a homophobic father, constructs a scenario in which the potent force of rejection is underscored by a recognition of love--but not acceptance, "My father rose, his face red. 'What the hell are you saying? Are you saying you're a faggot?' His fists crashed down on the table. Damn it! He sank into his chair as if defeated, his head in his hands. He looked up at me slowly; I knew then how much he loved me." Contamination. According to Douglas [40], beliefs about pollution and contagion are important expressions of social regulation and morality. These beliefs offer normative guides for behavior, sustaining •

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ideology concerning what and who is 'clean' or 'unclean.' Persons with AIDS may be viewed as potentially dangerous because they can transmit a deadly disease and because they represent an underlying threat to social order. At the heart of contamination is the fear of touching someone or something that is perceived as unclean. This, of course, has significant implications for social relationships in every sphere of life. In his narrative, Joe described his apprehensions about being someone with a stigmatized infectious disease, someone capable of'contaminating' others, "I read in an article about an individual trying to get dental work done but because he was HIV-positive, dentist after dentist after dentist refused to treat him and you know, that scared me ... reading those articles you put yourself in that position. You think about, like going swimming in a public pool, like what would they do, scour the pool if they found out? Thoughts like that go through your head." This passage illustrates Joe's heightened sensitivity to community reaction and his belief in the extent of its power in two ways. First, he repeats the phrase "dentist after dentist," suggesting an ongoing and continual denial of treatment from a multitude of practitioners. The reaction is not imagined to be an isolated incident. Second, in using the metaphor of the swimming pool, Joe implies that people would be so afraid of infection, they would not only get out of the water, or drain the pool, but that it would be necessary to "scour" the pool. In this context, the use of the term 'scour' signifies an aggressive performance of symbolically wiping away any residue of toxin. Relational convergence is indicated in the students' mirroring of Joe's concerns about the intensity of the fear and hostility associated with HIV-infection. The student narratives suggest that Joe understands that AIDS categorically defines him as socially 'untouchable'. In a forceful representation of what this means in a communal existence, one student says, "I am treated as a pariah. After a while, I began to accept this treatment, and would 'warn' people of my condition. 'Outcast. Unclean,' I said." Another student asks the question, "Who in their right mind would want to be near me? All those stories that I have heard of all those men who are shunned by their families . . . Will I be like them? . . . What woman in her right mind would want me." A third student imagined the possibility of quarantine, "I hear so many stories about people with AIDS being shunned from communities. How can God let this happen?... I hear of religious leaders calling for mass quarantining of AIDS patients. Will people of my church want to do the same thing7" The social vocabulary expressed by these students echoes the potency insinuated in Joe's description of imagined public response. The words 'pariah' and 'outcast' are used to describe someone who is 'shunned' by others. The students' language eloquently captures the spirit of a dis-

embodied figure in a community determined to ostracize, repulse, and avoid. Perhaps the most powerful allusion to the social consequences of being someone 'infected' is a student's representation of Joe's fear that others will reject him because of his power to defile their world, 'Though they have accepted my past I do not know if they will now reject me. Will I be allowed in their homes or are they going to be afraid to be near me? Afraid I will contaminate their world?" Here we see a merger of the symbolic and actual manifestation of pollution in an anticipated social reality. In telling his story, Joe expressed concern about transmitting HIV-infection to others. He described talking to his roommate about the need to avoid the possibility of accidental exposure to the virus, " . . . at that time I didn't have a beard so I made sure my razor was not in the bathroom so that he wouldn't pick it up and use it." Regarding physical contact with his niece and nephew, Joe said, "When my niece would come to greet me she'd always kiss me. So I would turn my cheek so she would have to kiss me on the cheek. And I wouldn't let them drink out of my cup or anything like that. Even to this day they still ask me if they can and I say no." Joe's presentation of his cautious behaviour regarding personal contact was matter-of-fact and unemotional. In the subjective mode of the 'reader,' however, a student recreates the scene, attributing Joe with a longing for physical closeness, and an awareness of the social consequences, "I couldn't bear it anymore. Today I (phoned by sister-in-law). I spoke to the children ... I can't wait to hold them, to kiss them. No, No, I cannot kiss them. What if I transmit the virus to t h e m ! . . , once again a chill went through my spine. What if she stops me from seeing her kids. What if she never lets me play with them or hold them?" The interactional life as it is represented in both Joe's story and the students' retelling of it is rich with social texture. We have focused our attention on the thematic content depicting the experience of isolation and beliefs about contamination. Our analysis is not meant to suggest that Joe's story and the students' narratives are limited to these thematic elements. Expressions of social support, for example, have not been explored. A more complete analysis of the stories would necessarily document the relational aspects of both socially sustaining and socially disruptive elements of experience.

Affective convergence and dissonance Two important affective themes emerge in the student narratives of Joe's story of AIDS. The first theme calls attention to the experience of shame associated with having HIV/AIDS. The second theme centers around fear. In their narratives, the students build upon Joe's discussion of his homosexual past. They also extend his narrative account of fears related to being infected with the AIDS virus,

Medical students' first-person narratives of a patient's story of AIDS Shame. The experience of shame within the context of AIDS is significantly associated with the notion of contamination. At its core is an affective state of 'unworthiness,' in this case, because the self has become someone 'contaminated,' someone 'untouchable.' As Tompkins [41] points out, the essence of shame is a sense of inferiority in relation to others. Shame manifests itself only in the context of a real or imagined social life [42]. Thus, shame refers to an individual's, " . . . experienced or anticipated emotional discomfort arising from his understanding of the evaluation made by other actors of his acts, omissions, or qualities" [43]. Shame is forcefully represented in the students' portrayal of Joe's affective response to AIDS. Illustrating the way in which shame is embedded in the framework of social relationships, one student describes Joe's desire to talk with his girlfriend about testing positive for HIV, "The shame of my previous life was too great, and although I felt I would eventually lose h e r . . . I also knew that to tell her now risked instant detachment." The power of shame is imagined to be so great that to say anything at all would bring an immediate, an 'instant' end to his relationship. Other students' narrative constructions suggest that the force of Joe's shame is so compelling that Joe knows in his heart people can see by looking at him that he has AIDS. Two students, for example, imagine the following: I am so afraid to step outside my four walls because of the fear that people will recognize the fact that I have AIDS. They will take one look at me and know that I have AIDS. I have looked at myself in the mirror a thousand times. I don't look any different, but I know that they will see it. It is as if the word AIDS, with all it's taboo, is branded on my forehead. No, I cannot leave this apartment. Once they realize that I have AIDS, they will lock me up, never come near me and put me away. Suddenly, the homosexual lifestyle I had fled five years earlier and done my best to erase from my mind was rearing its ugly head ... This made it impossible for me to be with other people or out in public. I thought because I could not erase this ghoul from before my eyes, they too must see it, and therefore know of my disease and the reprehensible acts from whence it came ... I was too ashamed to even think of attending services or speaking to the Pastor. In his narrative, Joe does not use the word 'shame,' nor does he mention ever experiencing shame. Moreover, he does not describe specific incidents in which shame is insinuated. In this regard, the students' narrative constructions of shame indicate affective dissonance--a fundamental reworking of the affecrive content in the original story. However, in several narratives, a causal link is shown to exist between shame and punishment for a social transgression--in this case, Joe's past as a homosexual. Joe himself implies such a connection and this could account for the students' representation of shame. One student, for example, asked the question, "Do you blame anybody (for having AIDS)?" Joe replied, "No, not at all, you know, I got the disease because of a consequence of my action, you know, I lived as

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a homosexual and the consequences of that brought on the disease." Yet, when Joe described his feelings about homosexuality, he indicated that, while it may be a lifestyle acceptable to some, for him it was immoral, " I ' m not here to say homosexuality is wrong or right, but for me at that time it was wrong because I was trying to live according to the b i b l e . . . so . . . I got out of that life style." Later in his narrative, Joe reiterated the biblical censure of homosexuality with an explicit reference to sin, "The bible says that homosexuality is wrong, that it is a sin and I felt that I wanted to live according to the word of God as much as I c o u l d . . . I needed to get out of the lifestyle . . . it's something you can be set free from because I'm an example of that. I've been set free." When asked, "Do you feel that it's in any way a punishment?," Joe replied, "No, no, I don't believe that AIDS is from God, that He is cursing the homosexual community, the drug community. I believe that he is using the disease AIDS to let people know that it's a wrong lifestyle." Illustrating a direct convergence with Joe's account, one student repeated the substantive content of his sentiment "I don't feel that AIDS is God's punishment on the homosexuals and drug abusers, but I do feel that He uses the situations to let people know that they are living in sin." Despite the fact that Joe was careful to avoid passing judgement on individuals who are homosexual, he is very clear about his acceptance of biblical dogma which defines homosexuality as sinful. In contrast to the more literal interpretation of Joe's narrative offered by the student above, other students represent Joe not only as having done something for which he is being punished but also as believing that the punishment is deserved. One student's narrative configuration reproduces Joe's framing of homosexuality as a sin, but, contrary to Joe's account, the student attributes him with an acceptance of AIDS as retribution warranted by his past behavior, "Lord knows I deserve to be punished for the sinful life that I had lived . . . Maybe this is my punishment from God. Yes! That is exactly what it is--a P U N I S H MENT. I deserve this. I asked for it." Similarly, another student reconstructs Joe's narrative in a way that suggests Joe believes he is being punished for an earlier lifestyle, "I had brought this upon myself through my sinful past life, but I could not understand why God had chosen to punish me now, after I had changed my way." These narrative reconstructions illustrate both convergent and dissonant interpretations of Joe's account. The students imagine that Joe has internalized a social morality that rejects homosexuality and defines it as a sin. Joe has told us this himself. However, in direct opposition to what Joe said, the students credit him with a belief that AIDS is a punishment. This exemplifies the fluid nature of interpretation and its transformative powers-although Joe denied repeatedly a relationship

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between AIDS and punishment, nevertheless, his frequent references to homosexuality as something 'wrong' and 'sinful' seemed to suggest a different view. Students were provided with a value laden vocabulary with which to articulate an imagined response. The ambiguity associated with Joe's representation of AIDS either as, or not as, punishment for sin is reflected in his attempts to clarify his position. Here, for example, Joe tries to explain his reference to the devil, "I didn't say that AIDS was from the devil. Earlier I said that I had gotten AIDS from my actions. I believe that the devil can manifest symptoms in my body and I can fight them through prayer." The articulation of religious ideology by Joe presented the students with potent tools for interpreting and constructing an experience of shame. Fear. The essence of fear is an awareness of a threat combined with uncertainty about its occurrence and one's ability to cope with it [44]. The invisibility of the AIDS virus and a pervasive sense that it is beyond control reinforce personal and social anxiety associated with HIV infection. An important aspect of fear in relation to AIDS suggested by the students' narratives answers the question, "How does it feel?" After hearing the results of his HIV test, two students imagine Joe's fear, as 'numbing,' 'paralyzing' and 'suffocating.' Joe is depicted as simultaneously backed into a corner and 'slumped' to the floor: I was HIV positive and my life would never be the same. I was numb, paralyzed, unable to think or move--the words of the anonymous caller echoing in my mind, reverberating again and again. The phone dropped from my hand as I slumped to the floor, back against the wall, staring straight ahead. 'Sir, I have to inform you that one of tests, specifically the one that tests for HIV, tested positive.., this doesn't mean that you have AIDS ... It means that you have been exposed to the HIV virus.' I was silent. 'Sir, would you like to talk to anyone?' I felt sick, my body numb. I could hardly breath. It's impossible! How did Joe actually describe his experience of learning the results of his HIV test? His narrative suggests a very different version of the story. When asked, "What was it like to hear it (the test results) over the phone?," Joe replied, "I think that a personal one-on-one is probably better . . . I don't think it affected me, how I took the news, because you know, at that point . . . I had been building up to this especially after I was tested . . . so in that two weeks I was in a personal (state) of like building myself up in case it was positive." The students' interpretations of Joe's emotional response to learning the results of his test illustrate affeetive dissonance. The potency of the feeling states expressed by the students represent a complete reconstruction and distortion of what Joe said he felt. However, the students' portrayals of affect appear to be more congruent with Joe's genuine mood when they are considered in the broader context of his

account of the several months following the test. As Brunet [33, p. 8] points out in his discussion of bermeneutic composability, "The act of constructing a narrative, moreover, is considerably more than 'selecting' events either from real life, from memory, or from fantasy and then placing them in an appropriate order. The events themselves need to be constituted in the light of the overall narrative--in Propp's terms, to be made 'functions' of the story. Thus, the constituent parts of a story rely on the whole narrative for their viability, and conversely, the whole is necessarily dependent on the events contained within it." Viewed from this perspective, the students' representation of Joe's affect correspond more closely to the isolating, 'suffocating,' emotional paralysis implied in his narrative. A second aspect of fear revealed in the students' portrayal of Joe's experience answers the question, "What are you afraid of?." Over and over again, the students envision Joe's fear of death, and more specifically, his fear of being left alone to die a painful death, a death without love. One student, for example, imagines Joe saying, "There is no one to love me and I will die with no one loving me." Similarly, another student said, "I am so afraid of being left alone to die." A third student characterizes Joe's apprehensions about death in this way, "When will I die? How will I die? Will my death be painful? Will my family be with me or will they abandon me? . . . Now my future is gone, all of a sudden being ripped apart by an illness I do not understand." Joe's actual references to death were quite limited. When he was describing the period of emotional isolation following his HIV test, he said, "During that five months I was just devastated, because I would look at my cat and start crying because the cat's going to live longer than me." Later in his narrative, Joe said, "I was making funeral plans in January because I was mega sick. I didn't want to leave the ordeal of funeral plans to my sister or m o t h e r . . . I wanted to take care of it m y s e l f . . , and someone came up to me and said she prayed about it a week ago 'cause you don't just go up to someone and (talk with them about funerals). She told me, 'God said that you are to stop. You are to stop making those funeral plans.'" Illustrating a metaphorical articulation of affective convergence, the students' reformulations of Joe's fear of death embellish and elaborate the emotional content intimated in Joe's references to dying. Joe did not say he was afraid of death, but he did note that looking at his cat was a reminder of his own mortality, and that this association would cause him to cry. In the same context, he reported feeling "devastated." Also, Joe had apprised the students of his sense of alienation during the months when he felt unable to talk to anyone. Additionally, Joe's narrative about the church member telling him to stop making funeral plans suggests that he may have appeared, at least to others, to be preoccupied by

Medical students' first-person narratives of a patient's story of AIDS thoughts of his death. In reference to this particular event, two facts suggest that Joe's concerns about dying were more than passing reflections. First, he was 'planning' his funeral. Planning denotes a temporal quality of thinking about and organizing a project over a span of time. Second, the woman from church waits a week before telling him to 'stop planning' his funeral. Once again a time interval is involved--she waits seven days before discussing the issue with him, presupposing that the 'plan' was still being contemplated. The emotional content articulated in the students' narrative constructions portrays an affective landscape that resonates, elaborates and, in some cases, distorts the feelings expressed in Joe's story. Although we have limited our analysis to a brief exploration of representations of shame and fear, the narratives are replete with a wide range of feelings. Further exploration is needed to consider fully the interpretive scope of the students' creative response to the emotional substance of Joe's narrative. CONCLUSIONS

In our analysis of fourth year medical students' first-person narratives of a patient's experience of AIDS, we have applied a conceptual framework that builds on the interactive model of narrative critique. Relational and affective convergence and, conversely, relational and affective dissonance, reveal the imaginative reconstructions of emotional and interactional themes depicted in the patient's original story. Attention is focused on the students' interpretations of isolation and contamination to demonstrate points of relational convergence and dissonance. Similarly, we limit our analysis to the emotional content expressed in themes of shame and fear to illustrate affective convergence and dissonance. The students' search for meaning in the patient's story is revealed in their phenomenological representations of his alienation, his beliefs about contamination, and his deep concerns about being a person with AIDS. Elements of indeterminancy and openness in the patient's description of his experience with HIV infection provide fruitful ground for the imaginative wanderings of the students. In 'becoming' him, they appropriate his story, but being who they are--intentional actors in a culturally constructed and morally defined world--the narrative interpretations also reveal something about their own beliefs and values in reference to HIV/AIDS. The students' constructions of the patient's story are powerful and compelling in their portrayal of what it means to have AIDS. The narratives call attention to the way in which individual meanings are externalized, objectified, and projected onto a socially and morally salient 'other.' In this respect, the language and metaphors used by the students denote underlying cultural meanings associated with HIV infection.

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A fundamental ingredient of the first-person narrative technique is that it allows for self-reflection. The students were able to explore their personal feelings about AIDS and share their feelings with other students. Some students had difficulty saying the words, 'I have AIDS.' Regardless of the students' ease or discomfort in taking on the patient's story, they participated actively in the intense discussions that followed the reading of each student's narrative. The students were exposed to their classmates' points of views and vulnerabilities in regard to the experience of being HIV-infected. Using the first-person narrative approach in the seminar on AIDS proved to be an effective method of sensitizing students to the personal experience of living with HIV infection. Course evaluations were extremely positive, particularly in relation to this assignment. The challenge for medical educators lies in creating and reinforcing opportunities for students to develop increased awareness of and empathy toward individuals with AIDS. Learning experiences that transform fear into compassion will be crucial in alleviating student anxiety about working with patients infected with the AIDS virus. It is only through the amelioration of fear surrounding HIV infection that students in training will be amenable to pursuing medical careers that bring them into contact with AIDS patients.

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