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Being positive: women living with HIV and AIDS in British Columbia Howard, Carol H. 1993

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BEING POSITIVE:WOMEN LIVING WITH HIV AND AIDSIN BRITISH COLUMBIAByCAROL HEATHER HOWARDB.A., The University of British Columbia, 1987A THESIS SUBMITTED IN PARTIAL FULFILLMENT OFTHE REQUIREMENTS FOR THE DEGREE OFMASTER OF ARTSinTHE FACULTY OF GRADUATE STUDIES(Department of Anthropology and Sociology)We accept this thesis as conformingto the required standardTHE UNIVERSITY OF BRITISH COLUMBIAApril 1993© Carol Heather Howard Donati, 1993Department oThe University of British ColumbiaVancouver, CanadaIn presenting this thesis in partial fulfilment of the requirements for an advanceddegree at the University of British Columbia, I agree that the Library shall make itfreely available for reference and study. I further agree that permission for extensivecopying of this thesis for scholarly purposes may be granted by the head of mydepartment or by his or her representatives. It is understood that copying orpublication of this thesis for financial gain shall not be allowed without my writtenpermission.(Signature)Date ^7 /5-)DE-6 (2/88)IIABSTRACTThe following study is a phenomenological inquiry into five white, middle classwomen's experiences living with HIV and AIDS in British Columbia. The purpose, ratherthan describing AIDS as a medical phenomenon, is to document how being diagnosedREV positive has affected the women's lives, health, relationships and livelihoods. Acontext for the women's stories is provided through a critical review of the biomedicalmodel, as well as biomedical and community organizing perspectives on women andAIDS. Mostly verbatim accounts drawn from taped interviews conducted with the fivewomen sescribes their lives with HIV and AIDS. Experiences surrounding their diagnosis,sources of information about their illness, strategies for coping, management of health, andmanagement of personal and social identities are the themes explored. The women'sparticipation, the role of the researcher, and the work produced are considered parts of aninteractive process, demonstrating shared authority between the researcher andparticipants in the ethnographic process. Documentation of the women's experiencesleads to a discussion of the ways in which they successfully manage and control their ownhealth care and well being within the context of larger social forces of sexism, medical biasand stigma. The women are given the last word in the study. In conclusion, a review oftheir situations three years after their initial interviews contributes a significant emotionaland descriptive time-depth to the study.iiiTABLE OF CONTENTSAbstract^ iiTable of Contents^ iiiAcknowledgments vDedication^ viForeword viiIntroduction^ 1Chapter One Why Women and AIDS^ 3The Biomedical Model 4Biomedical Perspectives on Women and HIV/AIDS^6Community Organization Perspectives on Women and HIV/AIDS 9Critical Medical Anthropology, Phenomenology and Ethnography 11Locating Women With HIV and AIDS in BC^12Fieldwork^ 14Volunteer Response^ 15Interviews 18Representations: Allison, Lynne, Laura, Heather and Julie^19Chapter Two Living With HIV and AIDS^ 24Allison^ 26Lynne 52Laura 73Heather^ 96Julie 129ivChapter Three Personal and Social Identities: Managing or Being Managed?^153Personal Identities: Managing^ 154Sources Of Information 155Coping Strategies^ 156Managing Contact With Medicine and Health CarePractitioners 157Managing Intimate Relationships^ 158Managing Social Relationships 160Financial Impact Of Illness 162Social Identities: Being Managed^ 163Gender Bias In AIDS Definition and Research^163Lack Of Diagnosis and Misdiagnosis^ 164Public Images: Women As Vectors 167Speaking Out^ 168Chapter Four Where Are Allison, Lynne, Laura, Heather and Julie Now?^169Allison^ 169Lynne 173Laura 176Heather^ 178Julie 182Bibliography^ 187Appendix 1 Request For Volunteers^ 202Appendix 2. Volunteer Consent Form 203Appendix 3: Interview Questionnaire^ 204VACKNOWLEDGMENTSI would like to thank my committee for their direction and assistance in completingthis document. In addition, I thank my husband, my parents, our families and friends fortheir loving support and encouragement.viDEDICATIONFORC.viiFOREWORDIt is my hope that the following study will be read as a celebration of the fivewomen who participated in its making. Fundamental to this view is the recognition thatthey are ordinary women. Ordinary in the sense that none hold credit to greatappointment or public acclaim. The glimpses into their life stories offered here providevarious views of essentially middle class, white, urban, female realities -- impacted byHIV.None of these women assume any pretense to be a heroine. None have beenimmune to the burdens of stigma, isolation, fear, and suffering added to their lives withHIV. You may, however, note a lack of explicit anguish in what they have to say. This isa deliberate omission by the women themselves. Perhaps too private, the worst of theirsuffering is not a portion of the different experiences they have chosen to share.With courage and generosity they have spoken out in order that others mightbetter understand the difficulties confronting women diagnosed with HIV. They areanxious not to be perceived as victims. They wish to inspire, not sympathy, butconstructive practical support from communities and government, which to date havedone little to recognize their plight. Perhaps, most importantly, through this document thewomen seek a means of offering hope, support, and positive possibilities for women newlydiagnosed who must confront their own struggle, and find meaningful ways to carry on.Due to the nature of the disease and the complex diversity of women themselves,there can be no predictable script for women with HIV or AIDS. These stories constitutea brief, but significant, contribution to a much needed literature.It has been both an honor and a privilege to work with Allison, Lynne, Laura,Heather, and Julie. Any weakness in this text can be attributed to myself.1INTRODUCTIONAcquired Immune Deficiency Syndrome. (AIDS), was first recognized by themedical community in North America as a distinct disease category just over a decadeago. Understood in biomedical terms as a disease induced by a virus (Human ImmuneDeficiency Virus, or HIV), AIDS should be seen as presenting an equal threat to allhumans. A significant feature of the representation of AIDS as a disease in North Americais, however, its association with certain categories of people. AIDS is still depicted asessentially a man's disease, affecting homosexual, bisexual and intravenous drug usingmales. But women also die from AIDS. Although this topic has received attention only inthe last few years, women have been counted among AIDS cases since early on inreporting of the disease (Mays & Cochran 1988:949). The impact of HIV and AIDS ontheir bodies and their lives, however, is rarely considered. So far the trend in medicalstudies and literature is to treat women as a "special interest" topic, mainly focusing ontheir potential role as conduit for the disease through prostitution or childbirth. Whileincreasing concern over the heterosexual spread of AIDS has prompted someinvestigation, women's own experiences with the disease are consistently overlooked.How women themselves perceive and define their illness, how they inform themselves,what treatment choices they make, what their coping strategies are, how they manage theirrelationships, how they live and how they die are all topics that have yet to be sufficientlyunderstood or documented. Critically informed studies, particularly ones that take theperspective of those living with HIV and AIDS, are urgently needed to locate women - theotherwise missing persons - in the AIDS epidemic.The following study is a phenomenological inquiry into five women's experiencesliving with HIV and AIDS in British Columbia. Its purpose is not to focus on AIDS as amedical phenomenon, but to reveal women's experience of being diagnosed HIV positive:2how it has affected their lives, their health, their relationships and their livelihoods. InChapter One a context for the women's stories is provided through a critical review of thebiomedical model, and the current study is situated in comparison to biomedical andcommunity organizing perspectives on women and AIDS. In Chapter Two, the women'sperspectives on their diagnoses, sources of information about HIV and AIDS,management of health, management of identity, and strategies for coping are documentedand explored. What they have to say appears in their own words, as verbatim excerptsfrom the interviews. The women's participation, the role of the researcher, and the workproduced are considered parts of an interactive process, demonstrating shared authoritybetween the researcher and participants in the ethnographic process. Chapter Three offersa discussion of the ways in which the women successfully manage and control their ownhealth care and well being and contrasts this with a discussion of larger social forces ofsexism, medical bias and stigma that impinge upon their lives. The concluding chapterprovides further insight into the women's lives by updating their situations two and a halfto three years after their first interview.3CHAPTER ONEWhy Women and AIDS?The lack of reference materials on women and AIDS was a primary motivatingfactor for this research. Very few medical studies have been conducted specifically onwomen and AIDS, and, similarly, relatively few academic references exist on the topic. Ofthe articles that do exist, most originate from the disciplines of science, medicine, andpublic health. While it is generally acknowledged that AIDS involves both biomedical andsocial concerns, social science perspectives on the subject are significantlyunderrepresented. A small, but growing, selection of works, however, has recentlybecome available, written by women with HIV and AIDS themselves outside academia.Often these texts are grassroots inspired anthologies including brief selectionsdocumenting a variety of women's experiences. Both kinds of writing, biomedical andgrassroots inspired, represent important aspects of the overall picture of women andAIDS. It is the imbalance of volume, credibility, and coverage between them that is mostsignificant in reflecting society's emphasis and response to women living with HIV andAIDS.AIDS, including its biological and medical aspects, is fundamentally a socialphenomenon involving people in social and cultural contexts. Confronting the disease andits consequences requires a range of theoretical approaches extending beyond the limits ofbiomedical concerns. In particular, anthropology and sociology have much to offer,including ethnographic descriptions of women's experiences, and models for reflexive andcritical investigations of medicine and medical practice.I will introduce the notion of the biomedical model as a basis for criticallyassessing much of the existing writing on women and AIDS. After a brief look atbiomedical approaches, I will also consider some of the community inspired works4published in the last few years. These two general categories of writing will be presentedas contrasting, if not conflicting, perspectives on women and HIV with the latterdeveloping in part as an antidote to the former. In summary to this discussion, I willsituate the present study in terms of the two previous categories of literature described.The Biomedical ModelA theoretical perspective can be simply understood as a set of assumptions thatlend shape, focus, and definition to an abstract representation of events. A perspectiveindicates what constitutes data, patterns for collecting it, and means for its interpretation.Directed by a distinct perspective, modern western medicine is based upon a set of culturalassumptions known as the biomedical model.Dependent upon the concepts and methods of biological sciences, the biomedicalmodel is characterized by four main assumptions 1) the definition of disease as deviationfrom normal biological functioning 2) the doctrine of specific etiology - the notion that theexplanation of illness is more complete if its description has moved through several stagesfrom symptom, to syndrome, to identification of specific disease - 3) the universality ofdisease taxonomy, where each disease is believed to have distinguishing features,observable across different cultures and historical periods, and 4) the scientific neutralityof medicine, including the notion of medicine as objective science independent fromsociety (Mishler et al. 1981:1-19). Illness, from this perspective, is viewed as anautonomous entity, defined by universal criteria and isolated from the lives andexperiences of patients and physicians (Mishler et al. 1981:2).Acquired Immune Deficiency Syndrome has only recently achieved status as adistinct category of western biomedical thought. Its definition has been constructed interms of the four main assumptions of the biomedical model.Attention was first drawn to the illness as a result of an outbreak of unusual healthproblems among a small group of otherwise healthy young men in Los Angeles and San5Francisco. Evidence of deviation from normal biological functioning was sufficient toinvolve the US Centers for Disease Control (CDC), marking the beginning of an officiallyrecognized illness category. Clusters of symptoms were correlated, leading to theidentification of a syndrome and, in 1983, the discovery of the human immunodeficiencyvirus (HIV). Discovery of the virus provided researchers with evidence of a specificcausative agent.1 The legitimization of AIDS as a medical problem was made completewith the formal adoption of the label "Acquired Immune Deficiency Syndrome" torepresent the disease. Standardization of the AIDS definition in Europe and America leadto the recognition of the disease in countries around the world, as well as retroactivediscovery of HIV in frozen blood and tissue samples from as far back as 1956 (Shilts1988; Ross 1991)Science and technology, credited for current descriptions and understandings ofthe disease, are foci for both funding and hope for an eventual cure. There is anestablished belief, supported by science and medicine, that AIDS can eventually beconquered through advances gained through laboratories and clinics. Althoughbioscientific understanding of the disease has progressed at a rapid pace, optimism aboutthe possibility of discovering a cure in the very near future has waned (Maddox 1993:13).Lack of a scientific "magic bullet" cure has shifted emphasis to preventive measures as ameans of controlling the spread of AIDS. The social rather than the scientific contexts ofAIDS are increasingly recognized as a priority for understanding (Walters 1988: 239).Epidemiology is the branch of medicine specifically geared to investigate the spread,prevention and control of disease in groups or communities (Glanze 1985: 263). It is alsothe source for most of the information about risk practices, transmission routes and1 That HIV is the virus that causes AIDS is currently being challenged by a small, butgrowing, number of researchers. In the United States 20 people have been documentedwho have AIDS but not HIV. A full 45% of persons with AIDS in the U. S. have neverbeen tested for HIV, so it cannot be said with confidence that anybody who has AIDS isalso HIV positive (Ross 1991).6methods of risk reduction which, from a biomedical perspective, are considered to be thesocial aspects of AIDS.Biomedical Perspectives on Women with HIV/AIDSEpidemiological studies provide most of the statistical information available onwomen and AIDS. The large majority of these studies are conducted in the United States.American statistics on AIDS, including those specific to women, are not representative ofthe Canadian situation due to social and political influences, such as demography andhealth insurance, that are unique to that country. For example, in the US. the primarymode of transmission of HIV to women is through intravenous drug use, whereas inCanada it is heterosexual sex (Hankins et al 1988: 11; Health and Welfare Canada1990:11)Canadian statistics reveal that the number of female AIDS cases has grown steadilyover the last decade. Although this number is smaller than that of male AIDS cases, it isanticipated that the relative rate of new female and male cases will even out in the 1990's(Health and Welfare Canada 1990: 3). Women and AIDS: A Challenge for Canada in theNineties, (1990) a framework for AIDS education produced by National Health andWelfare Canada cites the following breakdown in female AIDS cases in Canada (allstatistics are as of October 1990): 227 female cases have been reported nationally, 139 ofthose have died; 59% of female AIDS cases are in Quebec, with another 22% in Ontario,7% in B.C., 5% in Alberta and 7% in all other provinces and territories2 . About 60% ofthe female cases for whom this information is available are Caucasian, with the remainderfrom a range of other backgrounds. About one-third are between the ages of 15 and 29years, one-third are between 30 and 39 years, and one third are 40 years or older (p. 3).2 Interpretation of these statistics can be misleading. The percentages shown are notnormalized in relation to population totals for the provinces. For example one mightassume from the percentages quoted that Ontario has a higher rate of female AIDS casesthan B.C. Actually, B.C. has a higher rate than Ontario despite lower actual numbers.7AIDS statistics tell only part of the story. It is worth clarifying the differencebetween HIV and AIDS. AIDS is the latter stage of HIV infection. To be HIV positive,or antibody positive, does not mean that you have AIDS. When someone is infected withHIV, antibodies are produced in the bloodstream. These are the antibodies revealed by anHIV test. AIDS is the result as HIV attacks the immune system over a period of time. Asthe immune system weakens, opportunistic infections, that is infections that already live inthe body but which are otherwise controlled by a healthy immune system, may take over(Positive Women's Project (Victoria) 1992: 16). HIV progresses to AIDS when one or anumber of the thirty-nine, CDC identified conditions recognized as "life threatening"combine with HIV (O'Sullivan and Thomson 1992: 190). Many people with HIV are"asymptomatic", they feel fine and do not have any health problems. They may fluctuatebetween ill-health and well-being over a long period of time (Positive Women (Victoria):16). It is estimated on average that there is an 10.6 to 13 year lag between HIV infectionand the onset of full-blown AIDS (Hankins 1990: 6). Projections estimate thatapproximately 30,000 Canadians of both sexes are infected with HIV. At this time,however, there is no means of accurately measuring the number of HIV cases (Health andWelfare Canada 1990:3).An indication of the impact of HIV on women can be gathered from studies ofperinatal transmission. It is possible for a pregnant woman to pass on HIV to her infanteither before or during childbirth. Although perinatal transmission only occurs in only oneout of three cases, all babies born of an HIV positive mother carry FEW antibodies in theirblood at birth.- It takes up to eighteen months after birth to determine if a child is actuallyinfected, or if her status is only the result of antibodies which will eventually disappear(Health and Welfare Canada 1990: 4).Large population-based studies in several provinces reveal the rate of HIVinfection in childbearing women. The highest rates have been documented in Quebec,where one woman in 1,638 who delivered a live infant in 1989 was infected with HIV8(Hankins 1990: 7). The rate in metropolitan Montreal was one woman in 616 (Health andWelfare Canada 1990: 4)3 . Comparable rates in Ontario for a nine month period ending inJune 1990 are one in 3,195 (Hankins et al 1990). The rate in metropolitan Toronto wasone woman in 1,976, and in Ottawa-Carleton was one woman in 899 (Health and WelfareCanada 1990: 4). Among pregnant women in British Columbia in 1989, there was onepregnant woman in 3,704 who was HIV-positive (Schechter 1990). The rate inVancouver and Victoria was one women in 1,300 (Health and Welfare Canada 1990: 4) 4 .Seroprevalence studies give evidence of the magnitude of the HIV problem amongwomen in Canada. They do not, however, provide information about risk factors or thecharacteristics or the needs of women who are infected. The primary mode oftransmission of HIV to women in Canada is unprotected sexual contact, either vaginal oranal, with an infected person. Sixty percent of reported female cases are attributed toheterosexual contact. The second most important means of transmission is injection druguse with needles which have been contaminated by HIV when they are loaned orborrowed. Only six percent of female AIDS cases are attributed to injection drug use.Twenty-five percent of women have been infected through blood transfusions (Health and3 The high rates of infection in women in Quebec may be related to slightly highernumbers than in the rest of Canada of reported cases of AIDS among women who are IVdrug users, and significantly higher numbers of women who are of Haitian origin (Hankinset al 1988:11). The Quebec study (quoted in the main text) also revealed a clearassociation between socio-economic status and HIV infection among women, withresidential areas on the Island of Montreal with median revenues below the provincialmedian accounting for 71 percent of the infections (Hankins 1990:7).4 A different perspective on Canadian statistics can be gained by comparison withnumbers from the US. A study conducted in November 1987 indicates that New YorkCity shows a higher rate than any Canadian city to date, with one women in 61 beinginfected (Campbell 1990:409). The same study shows that the figure is even higher forthe Bronx where one women in 53 is infected. More recent data (July 1988) reveals astaggering figure of one in 22 women infected in some parts of the Bronx, Brooklyn andManhattan (Santee 1988:13). San Francisco, one of the earliest cities recognized in theAIDS epidemic, on the other hand has a lower rate of infection among women givingbirth, one in 777, than Montreal (Health and Welfare Canada 1990:4).9Welfare Canada 1990: 4)5. No clear risk factor is indicated for the remaining nine percentof women (Health and Welfare Canada 1990: 5).Biomedically founded, epidemiological studies on women and AIDS are clinicallyoriented in the sense that they are usually based upon information gathered from a medicalor hospital context. Understanding of women is limited to a clinical setting and theirphysical symptoms. They tend to be perceived primarily in terms of their potential fortransmitting the disease. The term "women" appears to fulfill a mainly biomedicaldefinition by suggesting a physiological category distinct from males and associated withthe functions of pregnancy and childbirth. Those living with HIV and AIDS need theknowledge and information that science and epidemiology can give them. Much is still tobe learned, however, about how HIV infection manifests itself in women. The social,cultural, and institutional contexts of their illness, from their perspective, how theyexperience HIV and AIDS in the majority of their lives outside of the doctor's office, arenot properly taken into account in biomedical understanding of AIDS as a disease.Community Organization Perspectives on Women and H1V/AIDSSince the late nineteen eighties there has been a modest, but expanding literaturewritten by HIV positive women and the community group organizers who work toprovide services for them. This specific subset of literature on women and AIDS ischaracterized by multiple authorship and usually takes the form of thematically organizedchapters featuring a variety of different women's perspectives. Authors for the texts areeither drawn from the membership of a local HIV positive women's group or are puttogether from submissions solicited by the editors from HIV positive women nationally oreven internationally. Two examples drawing from local organizations are Women, AIDS5 This mode of transmission is considered eliminated since November 1985 when theCanadian Red Cross instituted special treatment precautions for blood products (Spurgeon1988:92). Future statistics should reveal a decreasing trend in this category.10and Activism, (1990) written by The Act Up/NY Women and AIDS Book Group out ofNew York City, and Positive Women: Women With HIV/AIDS Speak Out, (1992),authored by the Women's Health Resource Collective out of Victoria, Australia.Currently there are two Canadian books available. Canadian Women and AIDS: Beyondthe Statistics, (1990), edited by Jacquie Manthorne includes selections in both English andFrench from across the nation. Positive Women: Voices of Women Living WithAIDS, (1992), edited by Andrea Rudd and Darien Taylor draws from a wider range and ismade up of submissions from fourteen different countries, including Canada.While statistical information is often included in such volumes, the emphasis of thewritings is to highlight women with HIV and AIDS speaking out in their own voices abouttheir experiences. A variety of expressive mediums may be represented, for example Ruddand Taylor's volume includes photos, poetry and drawings, in addition to written passages.In contrast to biomedical writings, these texts are highly emotive, filled with pain, anger,sorrow, understanding and celebration. The volumes are produced from a feminist/activiststandpoint. Explicit avoidance of a medical or academic context is undoubtedly one of thefundamental goals of such writing. Their purpose is to directly address what is otherwiseoverlooked or left out of establishment writings about women and AIDS and to do so in away that is the most accessible to those concerned.Due to the nature of their compilation, these texts tend not to follow any overtlyexpressed theoretical framework. Despite the valuable descriptive and anecdotalinformation included, they are generally dismissed by the formal discipline of academiasince they are not produced within the strictures of their domain. The purpose of thisstudy is to provide a means of bridging the gap between these two bodies of literature bybringing women's voices within a social science framework. I do not see this process asone that attempts to "legitimize" what women have to say in any way. Authority naturallyresides in their experience. My wish is to contextualize, through conventions acceptableto academia, information and experience largely undocumented and unexamined in that11realm. The challenge has been to provide a meaningful, critical analysis that will prove theanthropological enterprise legitimate in representing the cause of those marginalized,without perpetuating the trivialization of their concerns and the balance of power againsttheir favor.Critical Medical Anthropology, Phenomenology and EthnographyCritical medical anthropology's perspective on illness considers the social, cultural,and institutional contexts of patients' experiences, as well as medical practice, to be topicsof interest and study (Mishler et al. 1981:1). In these terms, AIDS is understood as asocial as well as a biological fact. Social, rather than biophysical, constructions of AIDSas a disease are the primary consideration of this work, with individual ethnographicrepresentations of five women's illness experiences providing the primary foci of interest.Fundamental to the study is a phenomenological approach to collecting and representingthe women's stories. This approach pays close attention to experience as it is lived, priorto any second-order determinations. The aspect of phenomenology used in the presentwork is what Kestenbaum refers to as "non-philosophical phenomenology", that is anexploration of experience, consciousness meaning and subjectivity (Kestenbaum 1982:27). Verbatim transcripts from the women who volunteered to participate provide thebasis and direction for the study. Although a critical perspective is taken as the overallframework, the participant's commentary on their experiences lend the main power andemphasis to any critical perspective the study has to offer. The women's self-directedchoices in dealing with their illness, in themselves, offer significant critique to medicalapproaches to the treatment of HIV and AIDS. The study engages several issuescurrently debated in medical anthropology, such as the importance of the role of theresearcher, the need for adequate connections between micro and macro-level analysesand the problem of merging theory and praxis (Singer 1990; Scheper-Hughes 1990;Frankenberg 1988; Richters 1988; Bibeau 1988). As researcher/author, I have made a12conscious effort not to remove myself from the ethnographic representation provided. Anexplicit accounting of myself in the work is intended to create a more direct connectionbetween the active fieldwork phase of the study and its formal written presentation. Thenotion of ethnographic authority is engaged throughout the overall interactive process ofthis study, specifically in the editing phase where each contributor reviewed sectionsrelevant to her interviews as they were written up. The balance of authority betweenmyself as researcher/author and the women participants is, I believe, successfullymaintained by a written format that does not shy away from lengthy interview excerpts.HIV and AIDS present significant challenges to science, medicine and especially tohealth care. As perhaps has not been so evident in the past, in the case of illnesses thathave been successfully "controlled" through conventional medical means, AIDS drawsattention to the limitations of the biomedical approach to illness. This study begins at theboundaries of medicine. It begins where medicine has no jurisdiction to provide ablueprint for survival for the women who's stories you are about to read. Through thisdocument they provide their own models for living with HIV and AIDS.Locating Women with HIV in B.C.Although the British Columbia Sexually Transmitted Disease (STD) ControlProgram estimates that there may be over 500 women infected with HIV in the province(as of March 26, 1990) , 29 cases of women with AIDS have been officially recorded (asof September 30, 1992) (B.C. CDC 1992: 4). The small number of documented cases andtheir random isolation by geography contribute generally to the lack of profile of womenas a group. Not surprisingly there are few organizations or service groups specificallycatering to women's needs. Even those women who have access to existing services, notall are interested in joining an organized support group. Some women may prefer privatecounseling, others no contact at all with AIDS organizations. Personal preference, fear ofnegative consequences - losing a job, friends, an apartment - or the wish to protect a13spouse, family, or children may keep a woman from disclosing her HIV status. In somecases, individuals may not even confide in their own family. Finally, it is quite probablethat a woman diagnosed HIV positive may not know, or even have heard, about anotherwoman in the same circumstance. This situation creates a context of solitude anduncertainty for the women involved. And presents a challenge to the researcher.Voluntary access to women with HIV and AIDS, and the ability to ensureadequate means of confidentiality were the two main problems I confronted inrecruitment.Women for this study were purposely not recruited through hospitals, City HealthDepartment, Ministry of Health, or Ministry of Social Services and Housing administrativechannels. Although any of these avenues could have provided a roster of identifiablesubjects, in all cases I perceived undesirable contingencies related to potential control orsubject coercion.To gain access to patients through a hospital or agency I would have had to gainapproval from and associate my study with, either a hospital administration or the City orProvincial Health Departments. Working through a hospital would entail conforming toadministrative directives and rendering my study open to their review. The notion ofbeing introduced to HIV patients through the health care team responsible for their well-being struck me as potentially coercive. Access to women through a social service agencyseemed to suggest a similar compromise and potential for coercion. In addition, socialservice access might tend to reinforce existing stereotypical categories of persons withAIDS such as intravenous drug users, sex trade workers and street youth, whileoverlooking those less susceptible to government intervention. Women able to affordprivate consultation and medical care are not targeted by social service agencies and areable to protect their identities.My goal was to be as much as possible a peer to the participants in the study. Iwanted to avoid being a member of an establishment influential to their lives as HIV14positive women. I also wanted my work to be as free as possible from the bias oforganizations I might otherwise wish to assess or criticize. How to contact women insuch a way that their participation would be voluntary was my primary concern.FieldworkI began my fieldwork by volunteering to participate in the B.C. Task Force onAIDS: Women and Children. The B.C. Task Force is an informal group of interested andconcerned parties that meet bi-monthly in Vancouver to exchange information aboutwomen, families, and AIDS. Operating as a resource organization, rather than a supportgroup, the group has no funding, no official mandate or membership, and no formalhierarchy. It is constantly inspired by the energy of its founding member, Kathleen Smith,who is also responsible for organizing the practicalities of minutes, mailouts, and meetingarrangements.Begun modestly in 1987, the group has grown to include over forty participants.Represented are a broad array of health care professionals, social workers, street nurses,educators, councilors, volunteers, persons with AIDS (PWA's), as well as representativesfrom the B.C. Coalition For The Disabled, the Hemophilia Clinic, Greater VancouverMental Health, AIDS Vancouver, and the Vancouver PWA Coalition. Members bring tothe meetings information, videos, books, and handouts from their respective associations,or from conference and international conventions they have attended.With its diverse membership and assorted political perspectives, the Task Forceprovided me with a unique opportunity for meeting others active in dealing with issuessurrounding women and ADS. At every meeting I was able to introduce myself and mystudy, and to make contact with the volunteer organizations offering support servicesspecifically for women living with HIV and AIDS.To recruit women for my study, I chose to target non-medical and non-government AIDS support organizations whose membership is voluntary.15Volunteer ResponseI submitted an advertisement (see Appendix 1) calling for female volunteers toAIDS Vancouver, AIDS Vancouver Island, the Vancouver Persons With AIDS Coalition,as well as The B.C. Task Force on AIDS: Women and Children. Care was taken inwriting the advertisement to outline the terms for ensuring the participant's anonymity andconfidentiality. I received special permission through the University Ethics Board forvolunteers to sign the required consent form (see Appendix 2) with their initials only.It is difficult, however, to introduce oneself adequately through a briefadvertisement. It is also almost impossible to inspire the confidence and trust required forthe intimate and often painful disclosures about living with HIV. I had hoped to attractten volunteers from a variety of socio-economic backgrounds. As a result of myrecruitment procedure, I had to accept that my sample would be biased towards thoseaware of their status, those in contact with the groups targeted, those responsive to theterms of the advertisement, and those willing to participate.Five women responded to the advertisement and volunteered for this study. As itturned out, the women fell within a predominantly middle-class economic category withgross incomes ranging between $20,000 to $70,000. All had been aware of their statusfor at least two years (range between 2 and five years), had achieved a sense of personalacceptance with their diagnoses, and none were, at that time, in a state of medical crisis.The manner in which the women responded is, I believe, significant. It revealedthat, below the surface of public reserve and secrecy, and in the absence of formalorganization, women living with HIV are forming communication networks, life-lines ofinformation and support, among themselves.My advertisement for the study was posted. I was actively involved with the B.C.Task Force and the Women's Network, lobbying for the urgency of documenting women'sexperiences living with HIV. Of course, included in this work was the promotion of my16own project and the search for potential volunteers. For three months I received noresponse. No volunteers.I realize now that I had been undergoing a necessary trial period. I was beingwatched and assessed by those around me. All those I came in contact with at the TaskForce and the Women's Network agreed with the importance of HIV positive women'svoices being heard. It was myself as a person-- my sincerity, my values, my role as aresearcher, my social background, and my sexual politics -- rather than the purpose of mystudy, that were being assessed.I was aware that in the eyes of some people I did not always make a goodimpression. I found all organizing around AIDS highly politicized. It seemed I foundmore acceptance among the establishment-oriented workers, such as social-workers,hospital staff, city and federal governmentt workers than I did among the more grass-rootsorganizers. This had less to do with my convictions than with my being a white, middle-class, heterosexual, university student. It is possible there were those who chose not toparticipate in the study because they could not empathize with me as a person.The first person to approach me, disclose her status, and express her interest inparticipating in the study, was Allison. Allison was well-known to me as a co-member ofThe B.C. Task Force. We had spoken together regularly at meetings and even taken thebus home together. The Task Force had sponsored me to attend the annual AIDSConference held by the University of British Columbia in November 1989. I saw Allisonthere and we sat together for some of the presentations.During one of the morning coffee breaks Allison drew me aside from the crowd ofdelegates into a quiet hallway. She told me that she was interested in my study, that sheagreed with the importance of HIV women speaking out for themselves, rather than beingrepresented by others. She asked me if, as of yet, any women had come forward. I saidno. Then she told me she would like to volunteer: that she was HIV positive.17 •It was a powerful moment for both of us. I was very moved by her disclosure. Iwas also surprised because I had known her for so long without truly knowing hersituation, and concerned because I knew her to be pregnant. I had many questions to ask.Allison explained to me her concerns about confidentiality. We agreed not to further ourconversation that day, but rather I would contact her at home and we would makearrangements for an interview. Then Allison told me that there was someone else:someone she had heard about through the PWA society and had spoken to on thetelephone. This other young woman also happened to be attending the conference thatday. Allison said she had mentioned my study to her and that she might be willing tospeak with me. In mentioning this other person to me, Allison was careful not to revealher name. I did not know the woman's identity until she later made herself known to me6.The chairperson of the Task Force had arranged that those interested in the topicof women and AIDS were invited to meet over an informal lunch. About eight womenshowed up, including Allison and myself. Lynne was one of the other women there.Meeting me in this select, but public, grouping gave Lynne an opportunity to sizeme up in a safe, relatively anonymous setting. We each introduced ourselves around thetable, stating our name, affiliations, and our interests. Lynne spoke out last, introducingherself merely as an HIV positive woman. At the conclusion of our luncheon meeting,Lynne passed me her telephone number on a piece of paper and told me I could call her.Over the next two months I met the other three volunteers in a similar manner,through an introduction via another participant in the study. Allison played a key role inmaking my work known to others with whom I would have otherwise had no contact.Allison told me about, Laura, a grandmother with HIV, who was willing to hear more6 I did not, in fact, know any of the women's names or particulars until they themselvesrevealed them to me. I will make use of pseudonyms for the volunteers in the followingdiscussion, however, for the ease of narrative.18about my study, if I wished to call her. I did, and after introducing myself over thetelephone, Laura agreed to meet with me and tell her story.I met the last two volunteers for the study through Allison, as well. As part of herwoman and AIDS networking, Allison went to Vancouver Island to meet with the AIDSVancouver Island's woman's group. I wrote in advance of her trip to the director andgained permission to post my advertisement at their organization. Allison offered topersonally make my poster available at the private meeting she was attending. At ournext B.C. Task Force meeting there was a reciprocal visitor from the AIDS VancouverIsland's woman's group. Allison introduced me to Heather after the meeting. Heather saidshe was willing to talk with me, so we exchanged addresses and phone numbers.As a result of Allison's passing on my call for volunteers at the AIDS VancouverIsland meeting, I received a letter in the mail from a woman who said she had already gonepublic with her HIV status in her workplace and a local newspaper. She expressedinterest in also speaking with me. I dialed the number given in the letter and first metwith Julie over the telephone. We made arrangements to meet at a later date at her homeon the island.Allison proved to be a vital asset to my study by communicating information aboutmy work within a confidential network of HIV positive women. The integrity of thewomen in protecting each other's privacy and identity demonstrated a high standard ofconduct for myself as a researcher to maintain.InterviewsAn interactive approach between myself and the volunteer participants has been acentral feature of this study, and has been encouraged throughout the three year durationof the thesis project.One to three open-ended interviews were conducted, depending on the individual.Interview sessions were arranged at the volunteer's convenience and in a location of their19choice. Sessions varied between one and a half and three hours duration. These weretape recorded and the volunteers each received a taped copy of their interview. Later, allthe tapes were transcribed into verbatim written text. To ensure confidentiality,volunteers' real names do not appear in any of the taped or written materials. Pseudonymswere selected by each volunteer and have been used throughout the text. In addition, Ihave chosen pseudonyms to replace the names of friends or family members mentioned inquotes used in the following pages7.Each person participating in this study has had her own reasons motivating herinvolvement. I believe it is fair to represent that involvement as having two levels, onepersonal and one collective. While the five volunteers' personal situations vary widely,they are all similarly affected by the particular ignominy, ignorance and fear that comeswith being a woman diagnosed HIV positive. They are motivated as much by reasons ofthe social context around them as by their own unique inspirations.For my own part, my personal purpose has been to complete a Masters thesis inAnthropology. On a collective level, my commitment is to the importance and beauty ofindividual voices. My choice of topic represents a sincere concern for the cause of womenliving with HIV and AIDS.The volunteer's different personal motivations for speaking out about women andAIDS resulted in five powerful interview transcripts. Although eloquent in themselves,my responsibility is to contextualize their voices in meaningful academic andanthropological terms.Representations: Allison, Lynne, Laura, Heather and JuliePerhaps the most frequent response to knowledge of a person's havingcontracted HIV is, "How did you get it?" The significance of how an individual7 The exception is Laura (a psuedonym), who chose to use her family member's realnames in her account.20answers this question reflects an important aspect associated with this disease.Blame. The curious want to know the way someone contacted the virus becausehow they respond will be contingent upon such knowledge. Contracting the virusthrough a blood transfusion, tissue transplant, or serum, as is required byhemophiliacs, does not garner the same response as someone who has contractedthe virus through intravenous drug abuse, or sexual, particularly homosexual,contact. There is a hierarchy of "victims" of HIV, some are considered to be moreinnocent than others. In introducing the five women who tell their stories in thefollowing pages, I have purposely omitted to respond to the question of how theywere infected. It is not a defining feature of any of them. Not wanting the readerto fall into the trap of seeing the participants in terms of their illness first, I haveprovided the following brief representations of the women that do not includeexplanation of the known or suspected means of their infection. I let the womentell their own stories in the following chapter.Although this study focuses on circumstances and experiences surrounding theirstatus as HIV positive women, it is important to keep in mind that the introductionsoffered here, and the later profiles, are but brief glimpses into the larger drama of thewomen's lives. These descriptions and quotes can only hope to, at best, imply theirpersonalities and to suggest the fuller scope of their everyday lives and responsibilities. Asa basis for their descriptions I requested standard details of personal history from eachvolunteer, including age, education, marital status, employment, and date of HIVdiagnosis. Some specifics may have been left out or altered, as negotiated with theindividual, in order to protect their identity and confidentiality:ALLISON is a thirty year old, university educated professional. Married for justover two years, she and her husband live in a recently purchased apartment in the city.Since learning of her HIV status, Allison has given up her downtown job and does21freelance contract work from her own home. She devotes considerable time and energy totwo AIDS organizations focusing on the concerns of women and families: one is a TaskForce providing information exchange on topics relevant to women and children and theother is a grassroots organization aimed at directly assisting women living with HIV andAIDS. She is eight months pregnant with her first child.Allison was diagnosed HIV positive in 1988.LYNNE is twenty-nine years old and has long been active in organizationspromoting rights for women and gays. Her educational background includes vocationaltraining and she currently works as a full-time clerk in a medical services industry.Engaged and in the midst of planning a late summer wedding, Lynne lives with her fianceein a rental home in an older city neighborhood. Aside from her involvements with theNational Leather Association and the gay and lesbian newspaper, Angles, she is veryactive in a local Person's With AIDS (PWA) Coalition. She has participated in a "buddy"program, visiting PWA's in the hospital and, since her own diagnosis, has been involvedwith counseling and public education efforts.Lynne was diagnosed HIV positive in 1988.LAURA, fifty-eight years of age, is retired and lives with her husband in theirfamily home in an ocean-front community just outside the city. She worked as a secretaryup until a few years ago when she was forced to retire for health reasons related to cancersurgery. She and her husband of thirty-nine years have three children and fivegrandchildren. Just prior to her own diagnosis, her son, a professional living in the UnitedStates, was diagnosed HIV positive. Laura does what she can to educate her family andpeople she meets. While she has not had much contact with AIDS organizations, she wasrecently approached by one and has agreed to participate in education programming.22Laura was diagnosed as being HIV positive in 1988. At that time she wasinformed that she had been infected for the last six years since 1982.HEATHER is twenty-nine years old and lives in the city with her five year olddaughter. She grew up in a rural community where she completed grade eleven bycorrespondence. Heather ran a successful day care center from her rental home untilrecently when she lost her license due to her HIV status. She is divorced and currentlydepends upon a social service income to support herself and her child. After learning ofher HIV status, Heather founded a support group specifically for women living with HIVand AIDS in conjunction with a local AIDS organization.Heather was diagnosed HIV positive in 1987. After contracting Pneumocystiscarinii pneumonia (PCP), she was diagnosed with full-blown AIDS in 1988.JULIE is a forty-five year old health-care worker. Born and raised in Europe, shereceived her training there before immigrating to Canada in 1966. Since moving to thewest in the early 1970's, she has worked as a psychiatric nurse in an acute care section of alarge urban hospital. Currently she is on long-term disability from her job for healthreasons related to HIV. Julie is single and lives with her cat, Pumpkin, on a property sheowns with a large garden just outside the city. In an effort to educate others she has gonepublic about her HIV status at her workplace and in the local media.Julie was diagnosed HIV positive in 1985.In the following chapters, two levels of analysis will be demonstrated on the fivestories provided. Chapter Two, comprised of a selection of quotes from the larger bodyof the complete interview transcripts, provides the first level of analysis. Chapter Threeprovides the second level through discussion of the major themes arising from thewomen's stories. The themes pursued are sources of information about HIV and AIDS,23contact with doctors and medicine, coping strategies, health treatment choices, managingsocial and intimate relationships, financial implications of being ill, and speaking out aboutwomen and AIDS. Both personal and social influences affecting the women's lives andlivelihoods are investigated. The final chapter, Chapter Four, returns to the women'svoices. During the three years duration of the study much has happened to those whoshare their stories here. Chapter Four, providing significant emotional and descriptivetime-depth to the documentation of the women's experiences, updates their individualsituations two and a half to three years after their first interviews.24CHAPTER TWOLIVING WITH HIV AND AIDSPrinted transcripts of the taped interviews conducted with the five women in thisstudy amounted to approximately two hundred and fifty pages of single-spaced text. Thetranscription process was a laborious and time consuming task. With assistance from myhusband who transcribed half of the tapes, all the interview material was transferred fromthe tape cassettes to the computer, using my small hand-held tape recorder, manybatteries, and almost constant action of the forward and rewind buttons. Once the textwas entered into the computer, I went through all of the tapes again, by myself, matchingvoice to written text in an effort to achieve a verbatim representation of the spoken words.Spoken conversation is, of course, much different from written text. It is rich withinflection, repetition, pause and incomplete utterances which, along with intonation,expression, and body language, convey instantaneously what the written word can rarelyachieve. My strategy in attempting to follow as closely as possible to the spoken word asit was captured on the tapes, has been to offer as honest as possible a representation of theindividuals as they speak. To this same end, I have chosen to present each woman's storyas a complete vignette, rather than separating their voices in order to follow a commontheme, such as their different responses to medical treatment or relationships. This holisticformat allows the reader to best sense the personality of each Woman and, in turn, bestallows the integrity of each woman's experiences to be maintained.In presenting the five vignettes, I have tried to retain a standardization of formatthat generally follows the outline of the interview questionnaire that directed the originalinterviews (See Appendix 3). As all of the interviews tended to follow this format, aminimum amount of editorial intervention was required in ordering the quotes selected. Inmost cases, uninterrupted quotations have been selected. In some cases where, for25example, the volunteer spoke about the same topic in more than one place, sentences fromseveral areas in the interview on the same topic may be placed together. Where editorialintervention was required to make proper sense of a passage, words or inclusions appearin brackets within the particular quote. Rounded brackets ( ) enclose an aside orinterjection from the speaker herself. Squared brackets [ ] enclose words, explanations or,omissions for the sake of confidentiality added by myself as editor.26AllisonAlthough I had known Allison for over six months and we attended many of thesame BC. Task Force meetings, the day I interviewed her was the first time I had visitedher home. She lives with her husband, David, in a low rise apartment building in a wellestablished city neighborhood that slopes down towards the water. On the morning wehad arranged to meet it was raining. I stood in the shelter of the entrance to locateAllison's family name on the board outside the front door, and rang the buzzer. Allisonsoon appeared in the foyer to let me in.It was a friendly meeting. I noticed since the last time I saw her that Allison'ssmall frame was transformed by her pregnancy. At eight months into term, the front ofAllison's denim jumpsuit was round and full with the promise of her soon-to-be-born child.I commented on how well she looked as we entered her ground floor apartment and welaughed together as she demonstrated the difficulties of bending over.Allison made some tea for us, herbal for herself and regular for me, while I lookedabout the living room. Mementos from Allison and her husband's travels decorated thebookshelves and walls. Allison does consulting work from her home. So we would notbe disturbed, Allison turned on the telephone answering machine in another room to takecalls. We sat at the kitchen table.Allison had already looked over the volunteer consent form and signed it. On thisoccasion I gave her back a photocopy of the form, for her records. For my informationshe passed on to me a tape cassette of an anonymous interview she had given in 1989 onCBC radio about living with HIV. I planned to transcribe this tape as well as my owninterview with Allison for use in my study. Although I did transcribe this earlier interview,I ended up not using material from it. Our interview was much more in depth than theradio spot and covered more ground, in particular Allison's thoughts and decisionsassociated with her pregnancy.27With the assurance of confidentiality, Allison was happy for the opportunity to talkof her personal experiences living with HIV. A thoughtful and articulate speaker Iimagine she suffers considerable frustration participating in activist and support work forwomen and AIDS while remaining secretive about her own status. She conducts herself ina matter-of-fact and professional manner. The confidence that carries across.a conferencetable is present here from across the kitchen table too, but there is also vulnerability.Perhaps it is just my own impression of seeing her in her own home. Allison is the sameage as myself and we have much in common. I am anxious about her health and thepotential health of her unborn child. What she and her husband must bear through thistime is hard to imagine. We do not speak of these things. She appears relaxed andcollected, as always. I knew that she had another appointment for later on that morning.We had one and a half hours to complete this session.I set up my small tape recorder between us on the marble topped table. I began byasking Allison if she recalled the first time she ever heard about AIDS. She said shethought it was sometime around 1985. She heard about the screening of blood for AIDSby the Red Cross:The thought flickered through my mind. I wondered if there wasany possibility that I might have it, or have contracted it, because I had thisone relationship with a guy who was bisexual. It really just flitted throughmy mind and then it flitted right out again. I really never thought about itany further. I didn't feel that it touched me at all. It wasn't one of themajor issues of my life.Unfortunately, for Allison, this was to change. Three and a half years later, inNovember 1988, on the way home from work she saw a blood donor clinic and decided todrop in:28I just happened to be walking by a clinic, a donor clinic, and Ithought, Oh, I've got some time. I'll go and donate some blood. I cameout feeling good about myself for having made my social contribution.About three weeks later I got this call from the Red Cross saying, Couldyou come in. We'd like to talk with you and take another sample of blood.I think I actually had to come out and say, Is it the AIDS virus?Allison vividly recalls the moment of her diagnosis. Small everyday details of timeand place were rendered suddenly significant and unforgettable at the borderline betweenher life before HIV and the life she lives now:I was at work. It was probably about 4:30 in the afternoon on arainy December night. I had to go somewhere else and pick something up,and I remember I was traveling on the bus. I have a very vivid image ofthat evening, traveling on the bus, sitting on a side seat, the single seats,looking out the window and, of course, it's all fogged up because - youknow how it gets when it rains and all the lights outside..? It was dark andall these bright neon lights reflecting off the street, and sort of sitting therefeeling only half real and that this was a dream I would wake up from, andyet the other half of me knew that it wasn't. I was just Somewhat matter offact about it. I realized that it was possible it was a mistake. It could havebeen a mistake. I guess in one way I suspended all belief and all feeling fora while, because I had to let it go through my mind a bit before it couldreally sink in.29It wasn't until she got to the safety of her own home that Allison could dare tocontemplate what she had been told. As soon as David arrived she told him. He was verysupportive and they went to the Red Cross together the next day for a retest.8 Davidtested negative. Allison tested positive again:I went to work right away. I couldn't think of just going home andsitting and moping. I didn't know what else to do. I had to go on. I hadcommitments to make, meetings to go to and deadlines to make. I went towork and it was a miserable day. I didn't get much done. I thought aboutit in the course of doing all the rest of the normal things that I would havebeen doing in my life. I decided I would contact a counsellor and just talk.I needed to talk. I didn't have any information, but more than information Ijust needed to get it off of my chest and share it with somebody.Allison and David had spoken to the doctor at the Red Cross for about an hourand half that morning. The doctor had recommended that Allison get in contact with acounsellor at AIDS Vancouver. The counsellor was helpful in providing understandingand information. As Allison and David had only recently moved to the west coast fromback east, Allison did not have a family doctor yet. The counsellor was able torecommend someone and advised Allison to make an appointment to take further bloodtesting. To Allison the most important thing the counsellor gave her was the phone8 The test the Red Cross uses to screen all donated blood for HIV is called the enzyme-linked immunosorbent assay test or ELIZA test. It is inexpensive, rapid and easy to use(Spurgeon 1988:36). A non-reactive, or negative, result from an ELIZA test veryaccurately demonstrates that a blood sample contains no HIV antibodies. A reactive, orpositive, result, however, may sometimes be false and is always repeated more than once.A consistently reactive ELIZA test can be confirmed by one of several confirming tests,usually the Western Blot (other tests are the immunoflourescence assay, WA and theradio-immunoprecipitative assay, RIPA). The Western blot test distinguishes samples thatare true positives from those that are falsely positive (Pinsky et al 1992:7-8).30number of another women who was HIV. positive. Allison met with her just beforeChristmas:The counsellor put me in touch with this other woman who wasHIV positive and I met her. She was marvelous. She was so positive.She had a very strong sense that one could do things for oneself. Becauseshe was the first person that I met who, in any capacity, was able to giveme some concrete information about what it was like to live with it, I wasvery buoyed by that. Psychologically, it was a very good thing that I metwith this woman before, for example, I went to the doctor for tests anddiscussions and blah, blah blah. Because it completely cemented myattitude and my resolve that I could deal with it. I feel that that's whathappened. I probably was susceptible to a whole range of possibilities atthat point, but because that first person I was able to deal with wassomebody who was herself positive and doing things that were helping her,I felt I could do that for myself too.Allison credits this early meeting with another HIV positive woman as providingher with the resolve to find a meaningful way to carry on with her life. The woman wasliving proof that being HIV positive was not an immediate death sentence. Allison alsofelt optimistic because this woman was coping well, even though her immune system wasalready compromised and she had experienced some medical complications. Allison felt atan advantage since she was not even sick. Despite the inspiration the woman provided,however, Allison still suffered a period of severe depression:I thought I was coping quite well, but I had been dragging my butta bit and I wasn't able to find too much to be joyous about in life. It was a31difficult time. There are a lot of things that go through your mind. I mean,as much as anything I am a person who likes to have information, concretefacts and information to deal with a situation and, in some ways, I wantedthe information first before I started making any decisions about how I wasgoing to deal with things. It wasn't that I consciously said to myself, Howam I going to deal with this? But it's just that it kind of happens, becausehow you deal with things is how you live. About the end of January, thebeginning of February, I started to snap out of it and I was starting to feel alittle bit more informed about the whole issue. I had done some reading,such that I could, in-between working and everything else. I became moreknowledgeable as time went on about how HIV affects your body, andabout where my body was at in terms of. What the status of my immunesystem was.Finding out information about HIV and AIDS was one way that Allison found tohelp herself Newspapers, medical journals, popular magazines and books, providedample material about AIDS. AIDS Vancouver had a collection of reference materials.To find out the status of her immune system, Allison went to see a blood specialistat the hospital who conducted a whole spectrum of tests on her blood. The testsestablished a base line of information that subsequent tests would be compared to, in orderto gauge the effect of HIV on her system. The most important test for doctors, Allisonexplained, is the T-4, or helper cell, count9. In British Columbia a person qualifies to take9The T-4 lymphocyte count, or t-4 count, or simply T-4's, is the prognostic marker mostcommonly used to measure the immune deficiency of HIV disease. The test measures theabsolute number of T-4 lymphocytes per unit volume of blood. While values vary, ahealthy person's count can range between 600 to 1400. After HIV infection the T-4 cellcount usually drops below 800 and continues to drop smoothly and steadily downward atan average drop of 40 to 80 per year. As immune deficiency worsens, the drop may beaccelerated. Most physicians recommend anti-viral medication to persons with T-4 cell32AZT when their T4 cell count falls below 30010. At the time of her testing, Allison's T4cell count was just around 300.While the information Allison received from her doctors gave her a picture of howher body was coping with HIV physically, they did not provide her with a way of dealingwith her everyday life. Again, Allison found her early contact with another woman livingwith HIV useful in providing insights into strategies for coping on a day to day basis. Keyto her strategy for coping was regaining a sense of control over her life, otherwisediminished by her illness:One of the things this woman whom I had met who was also HIVpositive had told me about, what she was doing a lot of was what shecalled "mind-body healing". Essentially, it is using the techniques of self-hypnosis. Using your mind to help heal your body.. So, I found thatintriguing. I did some reading on it, some of it was guided by her, andsome of it was just on my own. I read Bernie Seigal's book, Love,Medicine and Miracles, that was recommended to me. It's about cancerpatients who have cured themselves - quote - of cancer. A lot of reallypositive stuff. I felt that people are doing this, why can't I? Essentially,that's the course I began to follow last year and I've been pursuing it eversince. Whatever medical science has to say about these, somewhatunproven by scientific standards, techniques like self-hypnosis, mind-bodyhealing, I have a sense of control over my body now. It seems to beworking.count below 500. The possibility of life-threatening opportunistic infections begins whenT-4 trends drop below 250 (Pinsky et al 1992:41-44).10Since the writing of this study, the criteria has changed in British Columbia and a T4cell count of 500 qualifies an individual for AZT.33Allison found she had to make some changes in her life, even in her personality,when adjusting to living with HIV. She made it into an self-empowering, rather than avictimizing, process:It's sort of interesting because, I think you'll hear this from anypeople who are faced with a life threatening disease, that all of a sudden itforces you to reassess your priorities and say, Hey, what is really importantto me? Then you start thinking, Why am I getting so excited aboutsomething that isn't that important? Or, Why am I spending my time doingthis if its not that critical? We should all live our lives as though we weregoing to be run over by a truck tomorrow. And when I say that I onlymean that you have to give the best to each day that you have and then younever feel that badly about the last day that you have. It allows you to saythat, I did the best that I could. So, I'm not going to really think that todaywas a wasted day, even though I didn't get everything done that I wantedto. You look for something good that happened in each day. That's whatI'm really trying to start doing. Looking for something in each and everyday that is good.Actually, it may sound.. its very simplistic to say that.. It wasn'teasy for me to do that, because I wasn't the person who would.. I wasn'tthe little ray of sunshine in everybody's life. I've been quite a moody personover time. I have, and do, let things get to me. I fret over things Ishouldn't fret over, but I made a concerted effort beginning aroundFebruary of last year, about three months after I first found out about this,Okay, its time I got on with my life. I still have a lot to contribute. Howam I going to live my life? I'm going to live my life the best I can, given34what I know. That's when I started looking for something positive in everyday.It's almost ..actually, going through the depression was goodbecause I tended to be oblivious to the good things during that time, butafter that I was able to get up and look out the door and see that it was afresh, crisp, March day and the snow was sitting on the mountains and theylooked like they were right next door. You know how it is when there'ssunshine in Vancouver? It's wonderful. I would feel wonderful aboutsomething little like that. About hearing a bird singing in the back yard orrunning into a friend and having a nice lunch, or even something as trivialas making someone smile on the bus. That's how I coped with it.Coming to terms with being HIV positive and finding a way to reorient herthinking for the future are intensely individual processes with which Allison continues tostruggle. A significant influence upon this self-journey includes the response and supportof those around her. Allison was diagnosed only shortly after she and David weremarried. His initial supportiveness aside, because David tested HIV negative, Allison triedto prepare herself for the possibility that he might rethink his option to stay in therelationship:Really, I was prepared for anything. I was prepared that he woulddecide he couldn't cope with it. We'd only been married for two years. Itwas a lot to ask of someone that you're just committed to spending the restof your life with: that they commit themselves to spending the rest of theirlife with somebody that's possibly not going to be around, or possibly couldpass on a life threatening illness to them. I had to be prepared. In my ownmind I understood that if he made the decision that he wasn't strong35enough to deal with it, that I would have to accept that. I knew it wouldbe really difficult and for a while there it was really touch and go. I didn'tunderstand how he really could leave the relationship, but I was preparedto let him go if that's what he wanted to do. He was able to work it out inhis own mind that he was in a good place in terms of relationships. Hewanted to stay.David's wholehearted and unconditional support is an important aspect of Allison'swell-being. Allison had to inform her family of her HIV status over the telephone, as all ofthem live out of the province. She empathizes with her parents response of shock andsadness:They were really upset. They didn't know really.. I think that anyparent when hearing about something happening to their kid that maythreaten their life., it must be devastating. They would be touched by it ona very emotional level. I'm sure for different people it's different. Somepeople would be more concerned with the fear they would feel becausethey don't know much about it. I think my parents just were upset becausethey've never had to deal with anything like this before. But they reallylove me and they continue to do so. There was no sense of rejection.Dealing with the response of others, even when that response is not somethingnegative, can be a burden. Allison explains that coping with another person's trauma andgrief at the news of her illness is a factor she has to consider when planning to disclose herstatus:36It's hard for people to hear that you have HIV. Mostly they don'tknow much about it. They know something, but what they know isgenerally more frightening than comforting. And so I feel that when I tellsomeone that I have this, that I have to tell them that I'm okay, too. It'sokay. Don't cry for me. On the average that takes from one to two hours,at least in my experience so far.Allison is very selective about who she tells, and who she doesn't, about being HIVpositive. One of the risks she tries to protect herself from is being identified in terms ofher HIV instead of as a person:More than anything I don't want people to feel sorry for me,because I don't feel sorry for myself. I don't want to go through my lifebeing pinned down. I don't want to go through my life being identified asthe person with HIV, because I feel that there is so much more to me thanthat. It's just one part of my life.Allison had much to say about her relationship with her husband, and how this hadbeen changed by the decisions they have made together since she was diagnosed:It has brought us closer together. I think he, as I, has realized thatevery day together is precious and every experience is precious. Not thatwe go through life thinking always about this, because we don't anymore.We did for a while. It was very, very prevalent in our thinking, but we'vegone on to other things now. It's in the background, but what it does is, itenriches our lives. It makes us appreciate everything we do together. In37the physical sense we have had to make some adjustments in our sexuallives, but that has not been a problem.Safe sex requires changes in attitude and practice. Allison describes thatknowledge, perseverance, and patience are helpful in dealing with the stresses of having toalter patterns of intimacy:I thought it would be more of a problem than it was. It's anongoing thing. We certainly didn't come to terms with that right away. Iwasn't even comfortable with, you know.. latex before, but you get used toit after a while. And the more information you have the easier it is to dealwith. I find that the more information I read about safe sex and what issafe sex and what isn't. .the more I read about it, the more comfortable I amabout the idea of safe sex. And David has sort of followed along. It hasn'tbeen easy for either of us. Its evolved. I mean we didn't just throw up our'hands at the first try. We've just sort of kept at it. It certainly hasn'tnarrowed our concept of sexuality. If anything it has broadened it, andthat's been good. There's definitely a learning curve.I think one piece of advice I would give to people who findthemselves in the same situation is not to be afraid to seek out professionalhelp for any kind of problem you have to deal with. There's certainly noshame in not being able to deal with things yourselves. Another thing is itdoesn't happen over night. I mean, we're talking a year and a half since Ifirst found out and we're still working things out. But if you understandthat its not going to get better over night, that its okay to be upset, its okayto not know for sure whether you're going to be together for a long time,its okay to take life one day at a time. Not only is it okay, it is almost38essential. Only that way I think can you cope with all the different things.You don't deal with one problem at a time, generally speaking, you know.And then this thing throws all kinds of different problems at you all thetime.One of the problems that Allison had to confront was the possibility of havingchildren. Allison and David were thinking about having a family just at the time she wasdiagnosed. The change meant that they had to rethink their options:For a while we thought about not having kids at all. I really didn'tknow if I could do that. I thought, well, okay. I'm prepared not to havekids biologically, but I'd like to have kids some way - through adoption,through fostering, or something. It became apparent, I didn't do a lot ofinquiring, because of my physical condition.. It is so difficult to adopt kidsanyway, even if you're healthy. So I thought, Oh, gosh, I'm not going to beable to adopt a kid! And I haven't had any children of my own, so the ideaof fostering a child that may have emotional problems or other kinds ofproblems that are common with foster kids, I was a little bit nervous aboutthat. And, also, there's my husband to think about. I think I was moreprepared to deal with problem kids that he was. It didn't deter me as much,but if we were going to do this as a partnership then we both have to be100% committed. I wasn't clear in my mind that he would be committed tothat route. So, we talked some more about having children and I did a lotof research.Allison went to her doctors, specialists, and the library to find out what they had tosay about pregnancy, childbirth and AIDS. The risk involved is perinatal transmission or39infection of the child with HIV through the mother during pregnancy or childbirth. Whilethe little information available would appear discouraging to many, and the commonattitude of medical practitioners at this time was to discourage pregnancy, or torecommend termination of pregnancy to those already pregnant (Anastos & Mane 1989:10), Allison weighed the evidence and made her own decision:I did a lot of research to find as much information as I could on thestatistical risk and probabilities and so on. What specific factors wouldcontribute to risk. I came away from that feeling, yes, there definitely wasa risk, a significant risk. The statistics I was able to find were showingrates from 15 to 50% (transmission of HIV to the baby) roughly,depending upon the study. The problem with all the evidence I could seewas that most of it was done either in New York City on women who werepoor, drug abusers, or minority women, economically, and probablyphysically compromised as well, or African women who, again, you aredealing with people who have a socioeconomic superstructure that iscompletely different than mine. I felt in terms of what the statistics weresaying, that I was probably on the better than average side of the statisticsbecause of my access to health care, my knowledge base and so on. And,secondly, I looked at the statistics and thought Okay, supposing you have a30% chance of passing it on. Well, that's a 70% chance of having a healthychild, isn't it? You know, for me, I thought, I'm a bit of a risk taker. Iguess I'd be willing to take that chance.The decision to try to have a child was, of course, not merely a matter ofacademics. Allison had to consider all the consequences, including the possibility that herhealth might be seriously compromised or that she would give birth to a baby that might40itself die from AIDS. The decision is a tremendous one to carry. Allison would not knowif her baby was free of HIV until six to eighteen months after its birth, when the effect ofthe antibodies she passed on to her baby wear off and the child's own immune systemtakes over:Both David and I had to think of it in terms that were not just riskstatistics, but very personal experience. So, you have a kid. What happensif the kid turns out to be HIV positive and dies on you after the first year?I thought, Can I deal with that? I've got a fairly good imagination, so - yetI don't pretend to say that I knew what it would be like if that kind of asituation would happen - I just knew that I was prepared to deal with that.And I understood even in making that decision that I would be puttingmyself at risk for some phenomenal hurt, but I also, in the back of mymind, knew that if I did not try it, if I didn't take that risk, I would alwayswonder whether it would have been possible. And I wasn't afraid of thepain I might feel about losing a child. I decided that any part of theexperience, for whatever the experience is worth, for me, it would beworth it. Even if the child lived only a year. I wasn't prepared to passjudgment on the value of my child's life, but I knew it wouldbe anenriching experience for me whatever the circumstances were and I wasprepared to do my damnedest to make sure that it worked out to the best.And here I am, nearly eight months pregnant, and I still don't know and Iwon't know for nearly another year what the circumstances of my child'shealth are. I am very confident that I have done the best that I possiblycould, and will do, to make sure that my baby is born healthy. Even if itisn't born healthy, I'm going to love it just as much and make sure that itslife is every bit as meaningful as the next child's, the next person's. That's41really the only way that I personally can cope with that decision, to knowthat I was going to make the best of it. But I'm confident. I'm fairlyconfident that I'm going to have a happy, healthy baby. The other thing Ican say about my pregnancy, I am very aware that my decision to have ababy is controversial in some people's eyes.Her own and her husband's feelings aside, Allison is concerned about otherpeople's attitudes towards their decision:I'm sure that there are people out there who would feel that itshouldn't be for me to put another life at risk, if you know what I mean. Imean, this little baby is a separate person, its not me. Do I have a right toput someone else's life at risk like that? I don't pretend to have an answerto that one. Obviously, for myself, I made a decision. I'm not going tocounsel anyone else to do anything else, either differently or the same as Ihave done. I think everybody has to choose for themselves, with abortionor any other controversial issue. For me, having a child is a very importantpart of fulfilling my personal goals. That's why I - we - came to thatdecision.The possibility of criticism or harassment to herself or her unborn child addsurgency to Allison's wish for confidentiality about her HIV status:Because of the fact that I realize it is a potentially controversialdecision, I am very protective of my baby's status and therefore, at thispoint, particularly of my own status. I'm not prepared to come out and tellpeople about it until I can completely trust them. I don't want to create42undue stress for myself and I don't want to risk my baby's confidentiality.The child has a right not to be pin-pointed as an HIV baby. We'll see whathappens. It's quite conceivable that it will be a perfectly healthy child and,in that case, I don't want it to be subject to all sorts of potential harassmentand discrimination.Allison also had concerns about the response of her doctors to her choice ofaction:I found that the doctors I spoke with were definitely swayed by theprevailing medical line which is that women who are HIV positive shouldnot have children because the risk of transmission is fairly high. I knew Iwas going to run into that resistance so it didn't phase me particularly. Ifound it a little frustrating because all I was really looking for then wasinformation. I knew that ultimately the decision was mine to make, nottheirs, and I would take their opinions into consideration, but basically Iwould make my own decision. I made my decision based on theinformation that was available, which I just told you before, I felt that I wasbetter than the statistical risk figures were showing or I had a betterchance. But I found after I made the decision to get pregnant, I told mydoctors (I have many of them), that they supported me wholeheartedly anddid everything possible to both get me information and make my passagethrough the system easier, and help me find the best of medical care.Allison has an excellent working relationship with all her doctors. She takes anactive, rather than a passive, role in her own health care. She takes what could be called aconsumer's approach to health care. It is not uncommon, she tells me, for her to get a43second opinion on health issues. This is not meant as criticism, but rather an effort on herpart to inform herself of the prevailing views. She finds that many doctors do not havemuch experience with REV among women. As much as possible she tries to work withher doctors, passing on the latest journal articles and medical information she has located,and attempting to recognize the doctor as a person, as well as a professional. Allisonhopes that her investment in time and effort into her relationships with her doctors will bereciprocated:I think of my family doctor as my primary care physician and that'swhere I go first if I have a problem. If she can't satisfy my curiosity oralleviate my concerns, I'll pursue another line. But I must admit I've takena very proactive role in my ovvn health care. I've definitely made it my.. Itsmy health. If I'm not happy with what my doctor tells me I'll either pursueit by going to do some more research or by asking someone else's opinion.I think you really have to do that. I mean, let's face it, doctors are onlyhuman beings. They only have a finite amount of time to do research andthey have a dozen different patients and problems to be familiar with. Youcan't expect them to devote all their time to researching your particularproblem. Whenever possible I give my doctor, my family doctor,information on AIDS, so that she can be informed, as I try to be myself Iknow she appreciates it. I also try and make sure that I have humanrelationships with them as well as professional relationships, as well as theclient-patient relationship. I try.. .1 make a very conscious effort to ask mydoctor how she is doing and how is her family life, and so on, so it is justnot a one way street. I want her to realize that I look at her as a personbecause I think in reaching out to somebody, whoever they are, you make44that connection with the person and then they see you as a person in return.For me that is really important.Allison's proactive role extends beyond doctor's office when it comes to a healthregime. She makes use of several alternative medical practices, including consulting witha native Indian healer. She has found alternative medical practices more encouraging thantraditional medicine, especially in that their diagnosis tends to involve recommendationsabout what to do to improve one's condition, as opposed to diagnosis of how poorly oneis doing. The difference may seem only one of perspective, but it involves key life-affirming aspects of hope and control. For Allison, the results speak for themselves:I was feeling very comfortable with my meditation and the mind-body techniques I was using. I actually felt better than I ever have in mylife. I have been very conscious of my physical fitness and my nutrition andgeneral health and so.. Actually my clinical markers, as they call them, myblood work, has been showing improvements, other than decline, which iswhat they normally would expect if you are not on any sort of medication.They expect you to get worse. I wasn't getting worse. I was stable.Allison is concerned about the lack of public profile of women with HIV andAIDS. The general perception that AIDS is not really a women's problem results inignorance, fear, and lack of appropriate services for women who desperately need supportand services. Allison, like many others, feels that women with HIV and AIDS comingforward into the public spotlight about their needs and concerns would have a positiveimpact on the problem. The nature of the secrecy and stigma inhibiting such action isrevealed in the language used to describe the process. Allison speaks in terms of women45"coming out", a term usually used to refer to a gay person's public revelation of theirsexual preference:Being a woman is difficult in some ways. There are so few otherwomen available to talk to about it. I think that more women need tocome out. I feel on the one hand moved to reveal my story, on the otherhand (pause) not guilty so much.. chicken, perhaps because I want toprotect myself as well. I certainly know that if I were to come out andspeak publicly about it, I would get a lot of attention. In some ways Iwould be a good candidate to come out because I am reasonably articulateand I have a strong sense of social obligation and I feel very strongly that Ishould do something about it, but I also have to live my own life. Rightnow it is more important for me to do that. The other thing about it is, ifyou come out and speak about it you can never go back and be your ownquiet little person, so you don't want to do that too soon or without a lot ofthought first.Allison is appreciative of her own situation of emotional and economic stability.She suggests, however, that not recognizing that women too are at risk of HIV and AIDScan have traumatic repercussions on individuals when they are diagnosed:I have never, ever encountered prejudice, or reluctance to help forthat matter. But I think it is very difficult for women because there are somany characterizations of this illness - disease, condition, whatever youwant to call it - that exclude women and exclude some of the things thatwomen are concerned about. I think it is really important for women whoare testing positive to be able to feel that they are not alone. I think there46are a lot of women out there who are feeling very alone and not knowinghow to cope, and feeling angry because its not their disease somehow.That its not fair that they got it. Its not like that really, it shouldn't be likethat. I'm very fatalistic about it. You get what you get: the hand that waspicked for you. You have to make the best of it, whatever it is. But ithelps to have support. I've been very lucky. I've had lots of support. Ithink I'm doing very well so far.The need for support and services are constant themes in Allison's discussion aboutwomen living with HIV and AIDS. I asked her about what services she has used and howhelpful she found them. What she does not say is that her own efforts in committee workand organizing for women and AIDS is considerable:I think because I had so much support from my husband and family,I perhaps needed less in the way of outside support than otherwise. Ifound the People With AIDS (PWA) Society very helpful whenever I'vetried to use their resources or access them. I know they have a lot ofpeople who are really good at support there. I haven't really needed to turnto them. I mainly use them for information and they have lots of that, too.Very welcoming people, too, I must say. Other than that, I have reallytried to go out on my own and make connections with people. There are anumber of groups around town that are working toward working forwomen with HIV and I've associated myself with those groups, so now Ihave access to those resources. You know, there're are a lot of reallywonderful people out there who are putting a lot of volunteer time to it, tofind women who are HIV positive and help them.47One of the main areas not adequately provided for in most AIDS organizing issupport for family concerns, in particular issues surrounding childbirth and children. Oneof the issues for HIV positive women is concern over whether they might be able to everhave children. Even if a women might not have considered childrearing before, thethought that there might be obstacles imposed can inspire grief, depression, or a sense ofloss:I think a lot of the issues are family issues, the notion of having kidsis a big one. Its more than a women's issue, but its somehow uniquely awoman's issue, too, because for many of us our fulfillment is tied up in ourreproductive role whether we chose to use it or not. Some of us chose notto use it. Its funny when something is taken away from us, you think -Hey, wait a minute, maybe I wanted that after all!In British Columbia where the official number of women infected with the AIDSvirus is still relatively low compared to the infected male population. Allison remembersthe importance of her early contact with another HIV positive woman:There are a lot of women who are HIV positive who do not knowwhere to access each other because there is no natural community. That'sdifficult because whenever you are isolated and alone and dealing withsomething, it is so much harder than if you have some support and help.I'd like to.. One of the reasons why I'm involved with these women'sgroups - the women's groups helping, looking out for HIV positive women- is that I think it is really important to make those connections with otherwomen. I'd like to be able to lean on and be leaned on.48While safe sex is widely advocated, Allison feels that more information should beavailable about what safe sex actually is and how to practice it. More dialogue on thesubject is the minimum effort required. Allison suggests a whole pattern of socialbehavior needs to be altered so that women can have more control over their lives andtheir bodies:It would be nice if there was a place where you could findinformation that pertains to how HIV effects women's bodies, how HIVcan be dealt with sexually, not just for people who already have the virus,but for those who maybe want to try not to get it. How do you deal withsexuality in the face of HIV? That's a really tough one. Our society has somany hang-ups about dealing with all kinds of sexual things to begin with.Throwing this one on top does not make it any easier. I'd like to see, Idon't know exactly how it would be done, but I would like to see somekind of a new sexuality for women. An exploration of the topic. I mean,how can women deal with taking charge of sexual relationships, so theycan prevent themselves from being put at risk? We can't let men direct oursexual relationships. If they have strong opinions about it one way or theother, which generally speaking men do (more than women, I think) Imean, within relationships.. Oh, I'm generalizing. I think a lot of womenprobably can take control of their own sexual relationships, but I thinkthere are a lot of women that don't and can't, who feel inhibited or afraid toeven ask a man to use a condom or don't feel comfortable about it, or laughabout it, or can't go to the store and buy them. It doesn't have to be thatway, only it is hard to deal with that on your own. Its nice to be a be to49say, well, here's one way that I can do it because so and so did it that way.Or even little things like eroticizing condoms.11If safe sex is the way of the future, then steps must be taken to remove itspresentation from the antiseptic realm of medicine to a more sensually appealing genre:One person, one women, I know who is HIV positive told me thatshe likes to keep her condoms in a really nice container beside the bed, youknow, a nice pretty, little container. I thought, that's a really great idea.It's so much nicer than reaching for this sanitized box with a picture of, youknow, a sunset. The packaging for condoms is pretty sterile and medical,you know what I mean? It's hard to eroticize safe sex. Who in their rightmind today feels comfortable about going into the drugstore and buyingrubber gloves? There are a lot of inhibitions about it, and being able todeal with that, such a resource is non-existent for women of any stripe.1211 Condoms and lubricant are standard equipment for safer sexual contact betweenpartners. Condoms of different varieties are now commonly available e.g. thin onessuitable for vaginal sex, heavier ones for anal sex. Dental dams, originally invented for usein dental surgery, are now recommended for oral sex on females (O'Sullivan 1992: 270).As one of the goals of safer sex is to avoid contact with body fluids, commercial lubricantsare necessary to use as a substitute. Water-based lubricants are recommended since oil-based products degrade latex.12Similar to condoms, latex gloves are used to protect one or both partners from contactwith potentially infected body fluids and to safeguard the health of the HIV positivepartner. In this case, David wears rubber gloves to protect himself from any chance ofinfection through contact with Allison's vaginal secretions. Although there is no clearevidence to suggest that a person can become positive from finger contact with vaginalfluids, except theoretically through open sores or cuts, the use of gloves is a safeguard thatrelieves worry for those concerned (O'Sullivan 1992: 271). Equally as important asprotecting David, wearing latex gloves helps to protect Allison from the harmful effects ofany germs or bacteria entering her system.50Allison's confident manner falters somewhat when I ask her whether she hasconsidered the possibility of her dying. It is a difficult question for me to ask and,obviously, not an easy one for her to consider. Since the moment of her first diagnosis shehas been dealing with just such a possibility. She has found within herself a means ofbuilding for a future, including her hopes for the child she caries within her:I would say that in the last year I have not dealt with it fully. Ithought about it and put it aside. I made a decision, I'm not going to die,basically. I do not want to die for another twenty years, so I'm not goingto think about it. On another level, I think I am ready to deal withwhatever comes next. As long as I'm healthy. I have this mind set that Iam going to be healthy for the next. - I arbitrarily picked 20 years becauseit is an easy nice round number - and so I said I'm not planning on doingany (pause).. I'm going to be around for the next 20 years, is what I say topeople if they ask. So, I am not ready to die. I am not so much afraid ofdeath, because I believe in.. Part of me believes in reincarnation, part ofme also accepts that when you die there is something more, somethingbeyond, something greater than what we're doing now. Here. For me, Idon't really.. I'm not afraid of death because I don't see it as the end. So..Imean, its hard to say. Maybe my opinion would change if all of a sudden Idiscovered that I was getting sick, you know? But I.. As I said before, Iam living one day at a time and I'm going to enjoy every day as it was mylast. I would like to be able to say that when I leave, people will think wellof me. That's as far as I can get with it at this point. I try not to be afraidof it. I'm not afraid of it at this point, but I am also not convinced that Ihave fully dealt with it, because I'm not at the stage where its confrontingme face to face.5 1For me the way to deal with it has been to say, okay, the potentialis there for it to be life-threatening. But what is not known, it's almost likeno news is good news. The total experience of AIDS is ten years and Ican't look beyond that because there is no previous history to go on. All Ican do is say I'm planning to be around in 20 years and maybe by then theywill have found a cure. That's how I choose to live my life. To look forthe positive things. Some days I get.. I have thoughts about it, not morbidones, but I'll think, you know, I might not be around. .not specifictimes. .but, for example I've talked with my Father about the possibility(pause) that I might die before he does. I don't think he is very comfortablewith that idea, but I've accepted that., that possibility is.. there. Now, if Ireally have to face that, then I will cross that bridge when I get to it. Forthe time being I choose to look only to the positives because I think if I'mlooking for the positive things, I'll find them, and if I look for negatives, I'llfind those too. So, I'm not looking for negatives. I've chosen not to lookfor them, but when I have to deal with those things I will deal with them. Iam prepared at least that much, to say that when it rears its ugly head atme, I'll look it in the eye and deal with it. But for now I am onlyconsidering the positives.52LynneI met with Lynne in her own home early one spring evening. I arrived by taxi tothe door of the comfortable house she and her boyfriend rent in a quiet, older cityneighborhood. We had set the time for around seven PM, to give Lynne a chance tounwind after work and have her dinner.Lynne welcomed me in. She directed me through the living room to the kitchen,where she wished to conduct our interview. She made tea, moving around the kitchenfrom the cupboard, to the sink, to the counter, as I set up my tape recorder and note padon the small arborite table in front of the kitchen window.This would not be Lynne's first interview about living with HIV. A year earlier shehad given an interview about being HIV positive to a reporter from a small local paper.She was not pleased with the way it had been handled, feeling that she had been a bitmanipulated and that she had not had sufficient control over what eventually was printed.Lynne made this known to me and then, together, we reviewed the consent form I hadbrought and discussed the terms of our interview process. Lynne explained that she feltconfident in giving this interview because the terms appeared to safeguard her concernsabout shared involvement and editorial control over the taped interviews.By raising the issues of responsibility and control at the beginning of our session,Lynne set the tone for our future collaboration by emphasizing not only the cooperativenature of our partnership, but our different roles as well. This helped to put us both atease by directly addressing the formally contrived nature of our meeting. That we werenot real friends, with a history of shared knowledge and understanding between us, wouldsoon be easy to forget as Lynne revealed the intimate details of her story.Cradling our cups of hot tea, we began the interview. In her soft, even voice,Lynne spoke about the events surrounding her diagnosis, her past and presentrelationships, her family, her health regime, her hopes, and her fears. She was open and53frank about her feelings and experiences, creating an atmosphere of closeness and trustbetween us. We had spoken for forty-five minutes, filling one side of my ninety minutecassette, before I realized that I had not set up the recorder properly. The tape was blank.It was a considerable setback for the both of us. I was extremely disappointed andembarrassed. Lynne must have felt just as disappointed, even betrayed. The error brokethe atmosphere of our discussion.. Lynne got up and made another pot of tea. We talkedoff the tape for quite some time before Lynne suggested we move to the more comfortablechairs of her living room and start again. I suggested that we briefly review what we hadcovered previously. Lynne demurred, saying that she was tired and preferred to continuefrom where we had left off.After my most careful attention to the workings of the tape recorder, wecontinued our discussion in the living room. We spoke together for another hour. Theprevious sense of intimacy in our discussion was quickly regained. It was almost as if insome way, my mistake made me easier to talk to. Although incomparable to the personaland emotional risks taken by Lynne in speaking out to a virtual stranger like myself, myerror made me vulnerable, and therefore approachable, too. In any case, Lynne did notloose faith in me. We stopped taping when Lynne said she was tired and wished to finishup for the night. She agreed to meet with me again to go over the material I missed in thefirst hour of our discussion. We did not set a specific date for that meeting, however, butleft it open. I was to call in a couple of weeks to make further arrangements.My next meeting with Lynne took place in my apartment. Lynne chose to meet methere as it was a convenient stop-off that fit in with other errands she was doing that day.We spoke for three hours more on tape about a variety of subjects relating to her ownHIV status and issues relevant to women and AIDS in general. I realize now that wenever really did go over the information from our first hour of talk. There seemed to be somany more things to say.54In the end, I never transcribed the tapes from our second interview. I spoke withLynne on tape longer than any of the other women in the study and our discussions rangedbeyond the outline I followed in other sessions. I did, however, review the issuessurrounding her initial diagnosis of HIV at a later date, when I began to write this chapter.I did not want to trust my memory of our first conversation. We agreed that, in keepingwith how our original interview actually transpired, I would paraphrase this section ofLynne's story without direct quotes.When I asked Lynne about the circumstances surrounding her diagnosis she toldme that in the spring of 1987 she began to feel run down and tired. These feelingspersisted and, after consulting her doctor, she subsequently underwent two mononucleosistests. The tests turned out negative, but her health problems continued. Throughout thefollowing year, she was plagued by ear and throat infections. Under the direction ofseveral different doctors at the clinic, she took eight courses of antibiotic treatment inalmost as many months. Although the doctors never seemed to question the reason for, ormake any connection among, her consecutive complaints, Lynne became increasinglyconcerned. Both her GP and her allergist had suggested that her immune system wasdepressed. In the back of her mind she thought perhaps there was something really wrongwith her. She suspected that something might be HIV.Lynne had both knowledge and experience to back up her concern. Lynne and theboyfriend she had recently broken up with were both bisexual and active in the city's gaycommunity. Lynne was involved in the distribution of the local gay newspaper, Angles,that has a province wide distribution. She also assisted her boyfriend in founding the firstCanadian Chapter of the National Leather Association, an American-based group involvedin education, and legal advocacy of consensual sex for adults, particularly sado-masochismand fetishes. Intelligent and well-informed, Lynne was already familiar with AIDS, itsimpact on the gay community, and its devastating effects on individuals' lives. Before her55own diagnosis, at the request of a friend she volunteered to be a "buddy" to someonehospitalized in the last stages of full-blown AIDS.Lynne knew her boyfriend had participated in a variety of high risk activities. Shealso was aware of his attitude towards HIV testing. She had asked him whether he wouldconsider taking a test. He was reluctant because he felt that, if his test turned out positive,there was no real medical treatment available to him anyway. His response was that whathe did not know could not hurt him.13Lynne felt otherwise and, once this relationship ended in December 1987, sherequested an HIV test from her doctor. She was tested on the 17th of that month. Shehad to wait four and a half weeks for the results. Lynne says she put any thought of hertest results out of her mind. The following weeks were stressful ones for her for severalreasons unrelated to her HIV testing. The office where she worked burned to the groundand was relocated to a different part of town. She moved, took a holiday, and found herapartment robbed, all during this period. On January 19, 1988, Lynne's HIV test resultscame back. The test results were positive. Lynne says she was not really surprised.13 The attitude that Lynne's boyfriend took is not unusual.for the late 1980's Soon afterthe introduction of the HIV antibody test in 1983-84, many AIDS service providersrecommended that antibody testing was not generally productive, citing potentialdiscrimination, personal distress, variability of test interpretation, and the lack of treatmentas the basis for their judgment. The argument in support of testing has always been thatthose infected have a duty to be so informed and to take steps to ensure they do not infectothers. In rebuttal to this, some AIDS service providers suggested that since people atsignificant risk are already encouraged to practice risk reduction, no additional benefit canbe derived from testing.Although the potential for discrimination, and personal distress are still factors toconsider when being tested, in the 1990's there are now compelling reasons for those atrisk to be tested. The problem of false or misleading test results has virtually beeneliminated. Perhaps even more significantly, however, medical treatments are nowavailable that have been proven useful before the appearance of noticeable symptoms. It isalso now recommended that those infected prevent themselves against infection fromexposure to other strains of HIV as well as against infection with sexually transmitteddiseases that may accelerate the progression of HIV disease (Pinsky et al 1992: 3-5).56Having seen AIDS first hand, she was well-informed with the both the physicalcomplications and the social stigma associated with the disease. Having PWA friends andknowledge about AIDS, however, did not fully prepare Lynne for the shock of her owndiagnosis and the challenge it presented to her:I think the hardest thing about being HIV positive is facing death,and making plans for the future. A lot of people who are HIV positive sayfor a period of time that they can't look ahead. And I had a period of aboutsix months like that. It was just awful. I couldn't - I think it was thesummertime - and I couldn't even see the fall. I couldn't imagine where Iwould be living or what I would be doing.Lynne found support and information available to her through her close associationwith the PWA Society. Through a strange irony, however, Lynne found that a previousexperience with personal crisis proved particularly helpful in dealing with her newsituation.As a yOung teenager Lynne had been raped. The trauma that she suffered then andher consequent journey, both personally and professionally-guided, toward healing andrecovery provided her with insights into how to best take care of herself:During the first phase, I went into heavy coping. What can I doabout this? The first thing I did was set up my emotional support network,and I learned as much as I, sort of, could absorb at the time. Which, in thebeginning, wasn't much. I couldn't read many articles or books. It was justtoo heavy, too distressing. But, I learned some basic stuff, you know, whatvitamins to take, what I could do. And I did those things.57Setting up a support network she could count on was a first priority for Lynne.She went to her family and a few close friends with the news. Although divorced, Lynne'sparents live in the city and were there for her when she needed them. Her mother helpedLynne to organize and educate a group of friends and family. They created an extendedfamily support network for her, planning to provide for Lynne's various emotional andphysical needs in the present, and as they may develop in the future.Support from others has been an important life-line for Lynne, however, it alsosignifies great change in her relationships with those around her. Although appreciativeof their concern Lynne finds, especially her parents' need for increased involvement in herlife now as she approaches the age of thirty, a little sad and even oppressive:There is a level of concern and a level of. .uh, uncertainty? I don'teven know what to call it. That's quite sort of unnatural, especially withmy parents. You know, I'm 29, and this should be a time in my life wheremy parents are around, but they're not a huge, immediate part of my life.When I was diagnosed HIV positive, somehow.. Well, I guess I needed itand also they needed it, but their parenting side kicked back into gear.And its a little hard. Its also hard because they worry. Particularly, myFather. Mom's a little bit more philosophical, more spiritual, willing to takewhat comes, but Dad is distressed by it. He doesn't show it, but I know itsthere. Its real hard sometimes to be just sort of natural andunselfconscious.Another priority for Lynne, in her strategy for coping, was to discover what kindsof proactive health measures she could take to maintain her health. Focusing positively onwhat she could do for herself, rather than negatively on what could in the worst scenariohappen to her, was a survival technique she had practiced before. Learning what steps she58could take personally to maintain, and even enhance, her well-being gave Lynne actualactivities to perform - taking vitamins, working out, getting proper rest - that helped herto get through the worst of her depression. Setting up a support network and taking anactive role in her health care helped Lynne to regain confidence and control in her life.Confidence and control are essential qualities of Lynne's ongoing well-being.Maintaining these qualities is often difficult. Lynne finds this especially true when facedwith ongoing contacts with medical practitioners and protocols. Even though Lynnedefines herself as "not sick", she has a daunting list of medical doctors and specialists thatshe sees on a regular basis. She has acquired a roster of eleven "caretakers", including hergeneral practitioner, an HIV specialist, a doctor who prescribes her AZT, a pharmacist, anallergist, a dentist, a chiropractor, a massage therapist, and a counselor:There's this huge medical event in my life just to stay sort of healthyand normal and keep a tab on things. I don't know, maybe I'moverreacting, but I don't think so. I've worked out this protocol with eachindividual specialist or practitioner and that's how often they want to seeyou. I mean, that's just the way it is. For me, its really a fortunate weekwhen I don't have a medical appointment on my day off, or I don't have totake time off work, or when I don't have to, you know. When I can justspend a whole week being me.About nine months after her diagnosis, Lynne found herself feeling better about herlife and her possibilities. Her sense of future, that initially seemed to telescope intonothingness, began to expand again into a farther view.Lynne had, by this time, become adept at managing her relationships with peoplearound her. While she felt most at ease with those who knew of her HIV status, she wasalso comfortable with those she chose not to tell, for example the majority of her co-59workers at the office. Having gained a sense of stability in her life, Lynne felt confidentenough to contemplate initiating new relationships with others. The prospect of meetingnew people, however, raised many questions for Lynne. One important consideration washer sexuality:After I tested HIV positive, I went through a whole period of, youknow, all the big questions - Will I ever want to be sexual again? Can Iever be sexual again? Who would ever want to be sexual with me again?Uhm, and the ethics and morals. You know, should I only get involvedwith other HIV positive people? You know, what should I do?Lynne came to the conclusion that she was not willing to be celibate for the rest ofher life. She had to decide how she would handle future sexual opportunities:I made some decisions, and one of them was that before I becamesexual with anybody I would tell them that I was HIV positive and wewould talk about that, and talk about safe sex. So, uhm, and I think, tellingfriends (about being HIV positive) helped open that door because I'd hadpractice telling people. I also had social support and acceptance.About a year and a half after her diagnosis, Lynne met someone she reallyliked through the science fiction club she belonged to. They began dating. Lynne was notsure of when to broach the subject of her HIV status with Ron, her new boyfriend. Shesuffered great anxiety over how to tell him and how he would react. She found herself inconflict, interested in being intimate but apprehensive of possible rejection. Finally, themoment came at a party one night at Ron's place:60We got to this kind of awkward point of, So, what are we going todo now? I finally said, Well, Ron, let's talk about dating. I like dating.Dating is good. I like dating and can we get together next week? Ithought, well, I really don't want to, in the middle of a party, in this guy'shouse, bring up this whole issue. Its kind of big and kind of heavy. Hewas being insistently interested and I finally said, Well, you know, Ron,there are a few things about me that you don't know and I'd rather havesome time away from the party to talk about them. I think he said, Well, ifits about your HIV, Frank already told me. Because I had talked to hisroommate who was my old friend and then Ron expressed interest andasked, Hey, what do you know about Lynne? and blah, blah, blah. AndFrank told him, which was fine with me. Actually, it was a great weight offmy shoulders, cause I was sitting there having a huge anxiety about howwill I tell him? And how will he react? I was doing this weird internaldance of flirting and being interested and stuff, but at the same time reallyholding back because what if I got this major rejection? It was hard. So,he said that, and it was like these gates opened. And he brought it up. Hesaid, Let's talk about it a little bit. And I said, Yeah, its true. And he said,Well, you know, I've been thinking about it and thinking about it, and whatI am interested in is you, not your disease, you know? HIV must be aproblem but there must be ways around it. I said, Well, yeah, there's lots ofways. He said, Well, I'm really attracted to you and let's basically try thoseways around it. Anyway, we continued to see each other and continued todate. And did a lot of pretty plain talking.Despite the intimacy of their ongoing relationship, Lynne says she did not initiallyshare all aspects of her life with HIV with Ron:61In the early parts of our relationship, there was a lot of my internalHIV life that I didn't show him. Like, when we had been dating for six oreight weeks, about ten weeks, one day I had a date with some family andfriends to sit down and talk about a living will and to do some willplanning. Well, I didn't say to him, Sorry, Honey, I have to go thisafternoon. I have to plan my will. It's kind of a damper on a relationship.But, I just went and I did it.Lynne and Ron's relationship progressed. Contrary to what she might haveexpected before her HIV diagnosis, Ron's proposal of marriage to Lynne precipitated acrisis of emotions:It was hard. I went through a lot of soul searching and basically, Isthis right? What kind of future can I guarantee this man? Will we ever beable to, for example, get a mortgage because my income at any time coulddrop? There was that whole sense of, Can I hold up my end of therelationship? Ron's line is, as it has always been, It's you that I love, and Iwant to have whatever time I can have with you, and if we have only acouple of years, I want that much. And if we have 50 years and I am luckyenough to be sitting by your side in our matching rocking chairs, I'm goingto be a fortunate male. I want what I can get.The couple decided to become engaged to each other, but not to announce it totheir family or friends for a few months, until the year anniversary of their relationship.This gave them a few months to "think and process". Lynne refers to this time as62"invaluable". Although Lynne agrees Ron didn't go into the relationship "blind", she wentout of her way to expose him to some of the realities of experiencing AIDS:I made sure a couple of times that I exposed him to what AIDS isall about. We went to see the Quilt Project,14 you know, and that waspretty nerving. And at one point I was organizing a memorial service for afriend that had died. I spent a lot of time at Ron's place doing that planningand stuff, and needed hugs, so he's seen the down side. (long pause) He'swilling to do it, so that's fine.As with any couple, Lynne and Ron's relationship is an evolving process. Animportant aspect that they have both had to adjust to is changes in the kind of physicalintimacy they practice. Their sexuality is fraught with stresses which they have no choicebut to confront. Ron is not HIV positive so there is always an underlying concern for hisprotection, the practice of safe sex involving the use of lubricants and latex barriers,including condoms and rubber gloves, precludes the type of spontaneity regular couplesmight take for granted:We talked a lot about what is safe sex. And in the beginning, andtill now, have practiced quite conservative safe sex. I've always said to himit's up to him to pick the limits he's safe with and I'll honor those, whatever14 The NAMES Project is a national effort to create a hand-sewn tribute to the tens ofthousands of Americans stricken by the AIDS virus. Thousands of three-by-six footbanners have been submitted to make up THE QUILT, each celebrating the life ofsomeone who has died of AIDS. Initiated in 1987 in San Francisco, the NAMES Projectfirst displayed THE QUILT in October 1987 in front of the United States Capital inWashington D.C. where it covered a space larger than two football fields. The Quilt hassince toured throughout North America as a visible manifestation of the tremendous socialimpact of AIDS (Ruskin 1988). THE QUILT was displayed in the Vancouver Art Galleryin 1989.63they are. And, uhm, like one of the things we've given up is oral sex onme. And, actually, in the beginning that was my limit, which I think helearned. Now, all the clinical stuff shows that oral sex is okay, but we'restill both really shy.There's only been a.few times when the mechanicalness of having tohave condoms and lube and all that stuff . there's only been a couple oftimes when its been an issue. I can remember once or twice when wewould be getting sexual and getting out the equipment and stuff, and Iremember once or twice where I just kind of shut down sexually. I think itwas resentment and anger at HIV, and it was just coming out at themoment. But we are very good at talking about things, and we just cuddleand cool out a bit, and talk and sort things through.Safe sex requires an openness and commitment not commonly anticipated orexperienced between couples. It is a learned behavior. Lynne finds that knowledge,practice, experimentation, and a sense of humor, are the key to comfortable proficiency:We're very knowledgeable. You know, use water-based(lubricant), don't use hand cream, don't use Vaseline don't use, you know,or anything like that, or massage lotion, anything that could be oil-based.So, we know how to use condoms. And I think that makes a bigdifference.Quite ironically we had a condom failure the first night we spenttogether because we were using really old condoms and one broke. Talkabout the test of a relationship! (laugh)64Lynne is fortunate to have the support of her partner, but there are many aspectsof living with HIV that cannot be fully shared. Perhaps the most significant change inLynne's life brought on by being HIV positive is her sense of reduced possibility. Lynneoften feels confined by the requirements enforced on her by being HIV positive. She feelsthat to maintain her health she must lead a carefully controlled way of life. Concerns overproper diet, exercise, health regime, safe sex, contamination and even future carerequirements, despite her best efforts, tend to drain vital aspects of choice and spontaneityfrom her present life:I feel like one of the effects of HIV in my life is I have to live mylife much more consciously and rigidly. You know, I have to take myvitamins, I have to exercise, I have to, you know, blah, blah blah... And Ireally get tired of it. I remember saying to somebody else who is HIVpositive, I'm really tired of being good all the time, you know? SometimesI'd like to go on a weekend tear. Stay up till five in the morning, sevennights in a row, if that's what I want to do. I don't think that's quite what Iwant to do (laugh) but, you know, it would be really nice to not have to beso consistent.Although her health is stable now, she is apprehensive about her future. IronicallyLynne's close contact with the PWA Society, both as a peer counselor and in attendingsupport group meetings, and her close friendship over the years with others living withHIV and AIDS, has given her vivid portraits of the difficulties that could lie ahead for her:My fear level is high and my anxiety level is high. Every time I goto a meeting -I described it once like looking down the barrel of a loadedgun - and part of that, for me, just comes from seeing other people my age65who are sick and so on. And I feel it could be me. Or, you know, maybeit will be me. And part of it comes from the more I find out about HIV andAIDS, the more there is to fear. Information and knowledge are a tool, butrealizing how many different ways I'm vulnerable, um, is hard.Aware of the prejudice often directed at people suffering with HIV and AIDS, andhaving experienced uneven treatment at the hands of heath care professionals, Lynne hasparticular concerns about dealing with doctors and hospitals. There are even morequestions for Lynne as a woman, since little research has been done to document howHIV and AIDS effects women's bodies:I'm doing okay, but if my health deteriorates I feel like, uh, I'm atthe mercy of several different levels of chance. One is, who will be myhealth care professionals? What will, you know.. What kind of care will Iget in a hospital? And, what kind of medications and treatments are thereand how effective are they, and what are they going to do to me in the longterm or the short term? It's pretty scary to face all of that.Lynne has concerns particular to being a women living with HIV. Issues aroundpregnancy and childbirth are important ones for her. Having decided that having childrenis not the right choice for her, she is still worried about accidental pregnancy. With therecent controversy over abortion legislation,15 Lynne is concerned about what thepossible outcome might be:15 Under the Social Credit government of Premier Bill Vander Zalm, conservative viewsabout abortion prevailed in the province of British Columbia. At the same time federally,the existing, more liberal, legislation on the subject was being challenged by those in favorof returning abortion to the criminal code in Canada (Lee 1988:5).66What if I have an accidental pregnancy? I've made the choice that Iwouldn't want to carry through with a pregnancy. I think it's a high risk formany reasons. And I also feel like I have a lot of .. I've had a lot of bigtraumas in my life. You know, HIV is kind of just another one on the pile.And I don't need to have a sick kid, or I don't need to have a healthy kidand me be sick and feel like I can't be a mom. So I'm.. my choice is not tohave a kid, but as far as I know, I'm still fertile. So what if I get pregnantand need an abortion? Am I going to have to go through the ringer and tryand see 20 different doctors to get an abortion?Despite her decision not to have children, Lynne suffers a sense of loss over howher possibilities have altered since becoming HIV positive:The chances of my having a fairly healthy baby are probably prettyhigh, but I've decided that I don't want to introduce that big a variable intomy life. And Ron and I have talked about it and have agreed. We can doother things other than having kids. That's O.K. But, it was a hardprocess. I had to go through a lot of mourning because.. Its funny, eversince I was a young teenager I had always imagined myself as a mom.Probably a single mom. And I had never ever, ever imagined myselfmarried. It was never part of my fantasy life at all. So, here I am gettingmarried in a few months, and I'm not going to have kids. But I.. I had toreally grieve. I had always wanted to be pregnant. I had always wanted tohave kids. I just had always wanted that experience. And, somebodyasked me once, Have you ever thought about getting your tubes tied orsomething so you wouldn't have to worry about accidental pregnancy?And I said, Well, I have, but there's always that possibility of that miracle67cure. Maybe tomorrow some research team in Japan will come up withsomething, you know, and maybe will cure the disease or contain it and Icould have kids. So, I'm not closing all my doors.As HIV is considered to be a blood born disease, anxiety around blood andbloodshed are understandable. Lynne finds she is fearful, often beyond reason, aboutaccidents or cuts that may put others at risk, no matter how slight, of contamination fromher blood:I still have a hyperawareness of my own blood and being reallycareful to keep other people away from it. If I cut myself at work orsomething I always bandage myself and that kind of thing. Actually, I hada milestone a couple of weeks ago. I got a paper cut at work and I didn'tthink about HIV till about two days later. And that, I mean, that wasliterally a milestone. The first couple of times I cut or injured myself after Igot HIV, uh, I had a real strong emotional reaction and a realhyperawareness. I would, sort of. until the area stopped bleeding, I wouldbe really cautious, really sensitive, about who was around. I didn't make abig issue of it, but I felt this big turmoil inside. A sense of my blood beingunclean.The sense of one's blood being unclean is not an uncommon one for person's livingwith HIV and AIDS. This perception takes on new significance when associated with awomen's menstrual cycle. Lynne sometimes feels uncomfortable about her periods now,and, where she did not worry before, she has new concerns about sexual activity duringthe time of her menses. While she recognizes her fears are greater than any real risk,menstrual blood has become a symbol encompassing several negative associations:68One of the issues that's really different from men, of course, ismenstruation. And so for a week to ten days every month, I have to dealactively with blood issues around sex and around... just personal cleanlinessand stuff. Technically, its not a more or less dangerous time than any othertime, as far as we know. I mean, yes, there is some residual blood productsor whatever around. But the theory is that my vaginal secretions and so oncould contain HIV virus, anyway, so if were using condoms and all thatstuff it shouldn't be a big issue. But, psychologically, there's this bigbarrier. On a practical level I do what I've always done in terms oftampons, or whatever. It's more, much more of an emotional thing. If Ihave feelings of self-dislike or if I'm struggling internally with HIV when Ihave my period, a lot of that will come out and it's directed at, Oh, I hatethis and I wish I could just turn it.. I wish I had an on/off switch aroundhere. Because it represents two things. It represents, uh, possiblefertility... Well, three things. Possible fertility, loss of fertility, which was abig issue for me, and the whole cleanliness and sex issue.For Lynne, living with HIV is an up and down experience. Since she has notdisclosed her status to everyone she knows, all those she works with, or even her fiancé'sfamily, Lynne suffers the stress of concealing her HIVness in certain situations:Well, I have good days and bad days too. And what I deal with ismy mortality, and my friends mortality. And death. And I deal with it alot.. And I can't talk about it and I can't take that to work. If I have, youknow, if I've got a day where I'm waiting to hear back on a blood test orsomething and I feel really spacey or really afraid, and I can't talk about it.69And that's really hard. Mostly it's hard because I worry that people willmisconstrue. People probably don't observe me as closely as I think theydo, but., uhm, I guess, I just want credit for doing as good a job as I do onthose days. But it's, you know, it's hard to, it's, it's, hard to know that I dosomething that's difficult sometimes and I don't get credit for it.Lynne is often frustrated because she believes that AIDS is still presumed by mostpeople to be a male disease. With her work at the PWA Society, she has heard of womenwho are HIV positive but who will not come forward for counseling:There's been a sense of isolation all along, and there's also a realstrong sense of invisibility. It's a gay male disease: it bugs me when peopletalk about it with that slant. To me it's a human disease and it doesn'tmatter who you are or how you got it. What matters is that it's people andwe all need to learn to deal with it. And then there's the other reality whichis, if you go in an AIDS organization in North America, it's going to beprobably 90% gay [male] staffed or volunteered. That's just the way it is.Lynne would like to see more women involved in AIDS organizing efforts,especially HIV positive women, coming forward. Based on what she has seen and heardthrough her own work in this area, Lynne is thoughtful about the reasons why this has nothappened so far:I think I have questioned a lot of times why are women so reluctantto [make] contact and the two answers I get, one of them makes sense tome and the other doesn't. The one that doesn't make sense is, Oh, womenare just really afraid and they really don't reach out. Well, I can sort of70understand that. I mean, historically women have been very self-oppressing around trauma and anything that would make them different or"other" and I think for any woman with a partner there's a huge level ofconcern about their partner. If I come out, everyone will know about him.But the other argument I heard that makes more sense to me is that oftenwomen find out [about being HIV positive] when they are in a state ofcrisis. Maybe their husband has just been diagnosed with AIDS, or a child,or sometimes multiple people in the family, and so they are dealing with areally high level of crisis and it's very hard to reach out when you are in themidst of that. I think sometimes when you come out the other side [ofcrisis] and can take a bit of a breath then you're ready to reach out and say,Is there anybody else out there who is in this boat? But I think sometimes,in the moment, you just don't have the energy.I asked Lynne whether she had thought about dying:I did a workshop on HIV and we dealt with several issues in death.And when we did our exploring death fantasy, the thing that became clearfor me is that I don't fear death. Dying itself doesn't bother me, whatbothers me is the idea of being sick and being helpless. The idea of beingout of control and uncomfortable and undignified is much harder to cometo terms with. And I think that's one of the reasons I've worked so hard atmaking helpmates of my friends around some of my HIV issues because, ifI come to a point where I can't do for myself through lack of energy or lackof ability, I feel I have people around me I can trust, and that's71Lynne thinks a lot about her future. She has serious practicalities on her mind.One of the conscious moves that Lynne has made since her diagnosis is to change jobs, toa place of employment that offered a union and health care benefits. Her salary is notgreat and Lynne anticipates health problems to confront her long before she has a chanceto build up enough savings to support her through her illness. A significant impact of HIVand AIDS on people's lives is economic:One of the ironic things about HIV is that it can be really laborintensive to be sick. (laugh) You know, trying to get a homemaker serviceand ensure that the homemaker will come on time or the community carenurse, or trying to find someone to install grab bars in the bathroom by thebathtub. You know, where do I buy, where can I borrow a commode? Ican't afford one for the bedroom. All this type of stuff, somebody has todo it.One of realities that many persons with AIDS must face is some kind of homehealth care, either from a paid nurse or a willing friend or relative. Home care is expensiveand not an affordable option for everyone. Lynne is concerned that her relationship withRon not change from what it is now to a health dependency:Even when I'm ill I don't want Ron to become some sort of primarycaregiver. I want him to be my partner still, but I don't think it would befair to him or our relationship if he had to do all of the feeding and liftingand changing sheets. I think it's really important for my dignity and stufffor him to not have to see all of that. I mean, we'll see. It may never haveto be like that, you know.72Lynne does not always have an easy relationship with her illness. Although she isgenerally accepting of her fate, she has moments of yearning:I waver back and forth. There are times when I am very acceptingand philosophical, you know, whatever comes, comes. And the other endof the spectrum is the fear of not having a future, not being able to finishprojects, have a relationship, you know, traveling, seeing your friends growold, and that kind of stuff.What would I do different if I was cured tomorrow? The thing thatI decided that would be different, I think, I would be a little moreadventurous, sort of live a little bit on the edge.At this point, two years after being diagnosed HIV positive, Lynne is philosophicalabout her condition. While she is willing to come to terms with HIV as part of her life,she is not ready to accept society's treatment of the disease or its victims. In her own lifeLynne has found a place for HIV and AIDS among causes that have long activated herconcern:I'd like to see a lot more social acceptance of (HIV and AIDS),purely as a disease, like any other disease and I would be really happy ifHIV were treated as matter of factly as any other disabilities. And I knowthat people with disabilities fight a continuing battle to be recognized andto be treated well, and be given more money. It's funny, in my lifetime I'vebeen involved in working with [disabled] people and involved in thewomen's movement. Really, it's not so much different, it's just it's anotherstruggle.73LauraI had only spoken to Laura over the telephone before the day I took the bus out tothe sea side community where she lives for our interview. Laura and her husband, Robert,of thirty-nine years live in a large, split-level home near the waterfront. Laura met me atthe front door and invited me in. Cheerful and welcoming, she lead me up the stairs to themain floor. The house is colorful and cozy with the furniture and collectibles of a busylifetime. She invited me to sit in her favorite room, a sitting room with a large skylight shehad specially designed as an ideal environment for her lushly growing house plants.Relaxed and confident in the attractive surroundings of her own design, Laura gave me theimpression of a person in the prime of her life. At fifty-eight, retired and already agrandmother of five, she has a full life behind her of raising a family. Laura and herhusband, who is planning to retire shortly, take every opportunity to partake of theirfavorite activities, sailing, traveling, and meeting friends.Laura's ability to live life to the fullest is, I learned, a response she has cultivatedthrough a series of crisis in her own and her family's lives. After hearing Laura's story Ifelt new admiration for her cheery disposition. We sat together in the sun room for threehours, taking only a short break from our conversation to have a drink of juice and forLaura to take her AZT. At the conclusion of out meeting, Laura drove me to the busstation where I caught a coach back to the city.Laura told me she first began to pay attention to news items and information aboutAIDS in 1984. She remembers the year because, at the same time, she was forced toretire from her job due to complications after surgery. She was interested in AIDSbecause it was referred to as a "gay" disease. Laura's son, Paul a professional working inthe United States, is gay. She felt she should educate herself about this disease, concernedabout the possibility that her son might at some time be affected.74All his life, their son has had heart trouble. As young parents, Laura and herhusband had to live with the chance that their infant might not survive. Throughout histeens, with a willingness to confront the worst and make the best of the time they shared,they weathered several critical operations on their son. Once his health stabilized, Paulgrew into a healthy and successful adult. Ironically, just before Christmas in 1987, hetelephoned home to say that he was infected with the HIV virus. It was a great blow tothe family, but one they felt they could deal with.Determination and experience with life threatening situations have helped to shapethe family's ability to deal with crisis. Laura and her husband have both had to come toterms with cancer. First, Robert was diagnosed with a cancerous polyp in his rectum in1977. Doctors gave him less than a year to live. That was thirteen years ago. Lauraherself was diagnosed with cancer in both breasts, in 1979, requiring a doublemastectomy. In April 1982, she underwent reconstructive surgery. The operation tooklonger than expected and Laura required a transfusion of blood. It was not a success andshe underwent four successive operations to try and correct the problems. The trauma ofpain and suffering she experienced over the years as a result of inappropriate surgery madean immense impression on Laura. The nightmare, unfortunately, was not yet over.Late one evening Laura received a telephone call from her general practitionerabout her original breast reconstruction surgery. He had some news about the operationthat had been performed on her almost six years earlier:In, uhm, '88, January the 5th, 1988 at 9:00 PM I got a phone call. Iwas reading the newspaper, thinking about getting ready for bed. Phonerang, it was my doctor. He'd been in surgery that day and he was back inhis office, and apparently he had had a call from [Dr. X] at VancouverGeneral Hospital (VGH) who was Head of Hematology. He had beencontacted by the Red Cross saying that blood sent to VGH on April 14th,75'82.. that some had come from a donor that had now come down with fullblown AIDS. And so everybody that received blood that day, ah, theirgeneral practitioners were contacted and told that these patients mustreport to the Vancouver General Hospital Lab the next day for bloodtesting. So, that was the first time [I heard].Needless to say, Laura found the late night call disconcerting:I was rather upset being told that time of night, and that I had to gothe next day. I thought.. He could have called me in. It's no time to tell apatient at night. I mean, if he had called me in the day, I could have calledAIDS Vancouver, I could have looked at things. You know, gottenmyself, maybe, some help or talked to somebody. But at nine o'clock atnight, who do you call or ring? I mean, after all, if I'd had it for six years,what was the rush to get there, you know? Ah, this., this is unreal! He'stelling me I have to go the next day? I had company coming for lunch thenext day and I had confirmed it in the afternoon. And I've got to gorushing to a lab? This didn't make sense. I mean, this was like.. It waslike a bad dream. And, too, my nightmare. Well, I didn't sleep too wellthat night. I kept reliving the surgery all over.Her doctor had recommended going to get tested the next day, suggesting that sheshould get her results back by the next week. Laura remembers that he said, "I'm surethere's nothing wrong with you." She followed her doctor's advice:I went the next day for the testing. They took my blood and I said,Will you phone me direct or my doctor on Monday?, and [the nurse] says,76You won't know for six to eight weeks. Well, six to eight weeks.. at myage too! I came home and my husband had got in from work and hewanted to know what was the answer. So, when I told him, he just aboutwent through the roof. He said, We're too old to wait for the other shoe todrop! So, he went upstairs and phoned our doctor and said, It must.. is itpossible to get an answer to this sooner? And, uh, the doctor said he'dcontact him the next day and see what he could do. So, he phoned him thenext day and he said, No, you'll have to wait for six to eight weeks.Laura and her husband could not live with the wait. They decided to try anotherchannel:My husband phoned another doctor down here [in the community]that was gay. We know him. He's a very nice doctor. And asked him if hecould do anything for us. So, um, I won't mention any names, but he saidto have me come into his office on Friday morning and he would retake myblood and I could take it directly over to the B.C. Provincial Health Laband he had a friend that worked there and they would watch my blood andhe could get me an answer within, uh, maybe five days. Maybe ten days atthe most.And uhm, so, that was a Friday I had had it taken. Well, by thefollowing Thursday my blood had come through: had been spotted and itcame up on the ELIZA test as "probable". And they did it again on Fridayand again it came up "probable". So, they did the Western Blot and it was"positive". There was no doubt about it.77Before going fiirther, I asked Laura to tell me about her series of surgeries,beginning with the procedure in 1982 that required the transfusion of, then unrecognized,infected blood:It was breast reconstruction which entailed a tummy tuck. And it'sa messy operation where they push the flesh up under the skin from thetummy, and they cut.. He cut my tummy muscles from each side. So I'mmissing all stomach muscles across there [gesture]. And they get pushedup under the breast to feed the tissue that's been pushed up. Otherwiseyour body would absorb the tissue, so the muscles have to come up. Andthen they put a piece of plastic mesh across your stomach muscle to replacethe muscle they have taken. Unfortunately, this was not sufficient to holdin my internal organs.He didn't know what he was doing. They would do it for a singlebreast. What they would do is they'd just take the one muscle and thenthey'd pull the muscle together and they patch it with mesh, and you're fine.You have a nice flat tummy. But I no longer have any stomach muscles, soI find if I'm lying on my back, I can't get up.So, anyway, he ran into trouble and instead of being a three hourssurgery, it was six and a half hours. And I lost a lot of blood. It was amessed up job. I ended up with four breasts instead of two, and chunks...I had breasts under here [gesture] and, as well, up here [gesture]. And Ihad a big chunk under my arm here [gesture]. It was just awful.For three months I was off work and had to walk around bent overlike an ape and slowly unroll, or I could have been in trouble. I followeddirections exactly right and I went back to work. Now, the surgery hadbeen in April and this was in October. I was finding it very difficult78standing on my feet at work. I had terrible pain in my left side and it wouldswell. So, my doctor sent me back to the plastic surgeon who said, Well,there's just a tenderness there. Come back to see me in January and youwill have forgotten all about it.Well, by January I was in worse shape. So, he says, I think you'vegot a hernia. Well, that's what I told him before. He sent me to anotherdoctor who examined me and he got me in the hospital. They opened meup. I had to have revised surgery. All the stitching he had put in with thismesh was coming undone right across. So, that had to be stitched up. So,again I was off work. It was about three months again I had to wait beforeI could get back.Get back and I'm still finding it's very difficult. This left side ofmine is really bothering me. I went back to the doctor. I guess it wasabout ten months and he decides, well, he'd better put me back in thehospital again. And he opened me up and found a hole in the mesh. Hesaid it was probably there when he did the revised surgery, but he hadn'tnoticed it.Finally, the last [operation] I went to Dr. [X] at UBC, who was inon the original operation of this type. He told me it should never have beendone for a bilateral mastectomy. So, anyway, he fixed me up as best hecould. I had liposuction under here [gesture] to get rid of these [lumps]. Iasked if they could put it back the way it was before [laugh], but theycouldn't do that. They said I'd have to be very careful lifting things. Icould, you know, have a hernia if I did anything that was a strain. I quitwork. [November 1983] I couldn't stand on my feet. I couldn't do my jobproperly. I thought, if I kept working I would go out of there in a box.79Laura's odyssey of operations and complications was shocking even whenreviewed briefly. She says she gets "riled" just thinking about it all, even now:[The original doctor] wanted to do that surgery. I was anexperiment. A guinea pig. My doctor and the plastic surgeon at UBC bothsaid I could have turned around and sued him. The reason I didn't was thathe made me so uncomfortable and I was so tied up with having to go in forsurgeries that I just felt I couldn't keep living that way: with a court case.And I mean, no amount of money was going to put me back the way I was,and I just figured I had to, uh, have a better quality of life and not dwell onsomething for money.Being diagnosed HIV positive as a result of the surgery brought the horror of herexperiences vividly back into her present life. She called her general practitioner to let himknow she had received her HIV test results. The memory of his insensitive reaction stillsurprises her:We told my doctor. My doctor was not too comfortable with HIV.What he said to me, he said, Oh, my goodness!! All those doctors thatoperated on you for these past six years! The poor doctors! So, that wasthe reaction I got. [Concern for] their safety. No compassion for me.Not surprisingly, Laura found a new doctor. Her husband, however, still sees thesame general practitioner.Laura tells me her diagnosis inspired her to think about suing the doctor whooperated on her. The statute of limitations allows a party six years from the time of an80event to take action. Laura was diagnosed in January and the statute of limitations wouldtake effect that April:So, I had a couple of months there that, if I hadn't found out I wasHIV positive, I could have run to a lawyer and started action. But, again,finding out you are HIV positive [in 1988], they were still saying that itwas a death sentence and I felt I didn't have time to waste, um, doingthings like that.Needless, to say being diagnosed HIV positive was an unexpected shock to Laura.Her husband, concerned over stigma and negative reactions, cautioned her not to tellanybody. Laura did not think she could do that:I felt like a time bomb ready to go off. That was my first reaction.And my husband is telling me not to tell anybody, family, nothing. I said Icouldn't live that way. I just screamed and shouted. I, I felt alone.Initially, I felt alone because I wasn't gay. I wasn't a male. I wasn't a drugaddict. And, as I say, you felt like a time bomb. You feel.. with myhusband's feelings coming out that nobody should know... And then you'rehearing on the radio about the houses being burned of children, you knowlike the hemophiliacs, the three children whose house was burned up. Andthey won't let these hemophiliac children into the schools. Uh, that does anawful lot to your self-esteem to make you feel, well, you've got to hide.You don't want to hide. And, uh, what's happening? It's a terrible period,but it lasted about four to six weeks: coming to terms and knowing you'renot dreaming. This isn't a bad dream or a soap opera or something, this isreality and you have to deal with it in a sensible manner.81Laura's husband went and took an HIV test. After six years of unprotected sexwith her, he was not infected. That, at least, was some good news. Laura telephoned herHIV positive son in New York:When I found out for sure, I phoned my son in New York and toldhim that we'd just heard. The next morning, from New York, he got intouch with the Gay Men Health Crisis, GMHC, and arranged for them tosend me Treatment News, He got in touch with Project Inform down inSan Francisco to send me literature. He phoned AIDS Vancouver andgave them my phone number to contact me. So, he started everything forme. And then, of course, I know lots of his friends here. And he had themphone me and they were the ones who got me my doctor who was nottaking any more patients. [The doctor] has [only HIV and ] AIDS patientsand he wasn't taking any more. And they talked to him about me and, uh,he agreed to take me on as a patient, which I am very grateful for.Her son arranged, via long-distance, for Laura to be put in touch with the feworganizations operating in Vancouver, as well as for her to receive information from AIDSsupport groups in New York and San Francisco. With support information madeavailable, and a sympathetic and experienced doctor Laura was in contact, almost from thestart, with more resources than most people with HIV have the benefit of. Finding all thiseffortlessly, with assistance from within her own family, helped to relieve some of theconfusion encountered by many in a similar situation.Laura still suffered a period of depression, however, as a result of her diagnosis,especially when thinking of all the moments she would miss with her family:82I went through about six, four or six weeks, of sadness. Mydaughter had gotten pregnant, she would have loved a little girl, she's gotthe three boys. And uh, she'd gotten pregnant and I was so sad thinkingwhat if I'm dead within the year and I don't see this child. And if she has ababy girl or I don't see the boys grow up. And, I mean, things that Iwouldn't, no matter how well I live today, I wouldn't be there at theirweddings, or see my great grandchildren, you know, and I'd get tears in myeyes.Uhm, and as I say, at that time, I had, I guess on a talk show, I hadseen Dr. Bernie Siegel and I went and bought his book [Love, Medicineand Miracles]. I bought it, highlighted it in yellow, and it was like mybible. And that put me on the right track. Got me over that.. I haven'ttime to waste worrying what I can't or won't do. As long as I keep ondoing, I could live to 104. (laugh) But it really won't matter.Laura took no time in telling her other two children of her HIV status. They andtheir spouses were supportive. The decision was made not to inform her grandchildrenright away. Laura was adamant, however, that they should know. She is not bitter abouther disease. She feels she has much to be thankful for. Laura describes the effect of herHIV status on her family and her wish to educate her grandchildren about HIV and AIDS:[It] brought us closer, though we were a close family. Uhm, myson-in-law is just really super. And my grandchildren just got told lastyear. I'd been trying to educate them, too, that not to be sorry for me orfeel bad for me, just be glad that I've got this time to do things I want to doand enjoy myself and that I'm going after the brass ring and having fun. I83want them always to remember that I'd never said, Why me? It's just Now.Now's the time to start living and doing.It's actually given me.. made my life better. I take better care ofmyself. I rest more. I don't feel frustrated that I haven't the energy that Ihad before. Whereas I used to get upset because of the surgery - I couldn'tdo this and I couldn't do that - I haven't got time for that anymore. So, it'sgiven me a lot of release in that way. I think I've got a better quality of life.I certainly, uh, take better care of myself. I don't deny myself of anything Iwant. My husband has been good. I just have to mention something Iwant and I've got it. I've got to be careful (laugh). I have things I reallydon't care whether I have or not!But, uh, I thought the children should [know]. It used to botherme. I'd talk to my daughter and son-in-law, and my son and daughter-in-law, and I'd say, Well, I just don't want the children to see these things onTV. What are they going to think if Grandma dies of AIDS? I mean, if..when Grandma dies of AIDS, that she was a prostitute or a drug addict? Imean, I don't think that's right. I think, you know, I wish if we couldsomehow let them know.It Was my daughter-in-law in [the U.S.] told my grandsons aftertheir visit with us last August. So, it was an opportunity to discuss AIDSwith them too. They are aged nine and eleven, or nine and twelve. Thenmy daughter got the opportunity to discuss it with my three grandsons upin [the Interior]. In November, something came up, and the opportunityjust presented itself. It's nothing you can come out with bluntly, you've gotto pick your times and ease it in. And the youngest boy is seven, the nextone is eleven, and the next one is thirteen. And they, uhm, took it verywell. They're very loving boys and they, they don't want anything to84happen to me, but they were so glad their mother had talked to them aboutit. And the youngest, the seven year old was, well, Grandma's going tocome for Christmas isn't she? So, but they understand, I'm tired and I rest.And just suddenly sometimes I just get so tired, as if someone had givenme a shot of sodium pentathol. Suddenly, I'm just absolutely exhaustedand at least now they know why Grandma has to rest and they don't haveto wonder. So, at least that's done. As I say, educating your family toaccept it and to enjoy things [is important]. I want people to talk to me.I'm not afraid of dying and I don't want them to be afraid of me dying.Laura felt motivated to go beyond just telling family about her experiences. Inpart, she felt isolated by being an HIV positive woman. AIDS in the media is so oftenassociated with men: gays, hemophiliacs, or drug users. She had been so surprised at herown diagnosis. She wanted to educate those around her about risks of HIV for all people,and, in doing so, overcome the stereotypes that excluded her own illness:I felt so alone. I felt a tremendous need [to speak out]. I knew Icouldn't be the only woman that it had happened to. And, uh, all theytalked about in the papers were prostitutes, hemophiliacs, drug addicts...All there was were these people, you'd either have gays or hemophiliacs.And, this isn't the face of it. There are other people that have it too, andthey're all probably afraid. Their families won't let them come forth.They're too afraid, and it's got to come out that there's other people. And,uh, I, I thought, well, crazy, but a reason for being. I wanted to shout out,I wanted to tell people, my friends. I didn't want to be with anybody thatwould have a bad reaction [about me being HIV positive]. Then, I'd just assoon know [their negative response], than waste my precious time with85them. I wanted to educate my friends. If you're hiding it, then you're notyou any more. And I think, and I think, too, that's a burden on yourimmune system. So, you're not doing your health really any good.In talking with other HIV positive women in similar family situations as herself,Laura realizes there are consequences to speaking out that must be considered. She doesnot feel that she would have as much to lose, however, as younger women, who haveyoung families to raise:Both [another HIV positive woman] and I talked and, uhm, we'reboth afraid. Like, you want to get out there and say something and yetyou're afraid to get too public. I mean, you can do so much amongst yourfriends, educating your friends and then.. I have taken.. I just took thespeaker's training with PWA and I'm going to speak to small groups. So, Ifeel I'm doing a start. And, too, I am, I am older. I've had a good life.Laura's urge to speak out, supported fully by her husband, is tempered byconsiderations for other family members. In particular, she is sensitive to the potentialimpact of her outspoken role on her spouse:When he knew how I felt and what it would do to me if I had tokeep it inside, he knew that I had to [speak out], otherwise I'd bedestroyed. I could not keep it within me. And he said he would back me100%. If I had to go knock on every neighbor's door, if I felt I had to dothat, well, it's not what he'd do, but he would be behind me all the way.And he is a great support.86And, too, I must remember my husband not only has a wife withHIV, he has a son with HIV. So, he's got a lot to handle. I appreciate thatand I can't be totally involved with AIDS. I can't, uh, I have another life tolive, too. If I didn't have any family.. If I had nothing, I would throw mywhole self in and be a crusader. But, as I have a life separate from it, andI'm not giving my life up because of it. My husband and family do comefirst.I asked Laura if being HIV positive had effected her sexuality. She suggests thepattern of their intimacy has changed, mostly due to her insistence that they use a condomduring sex:I won't have sex without a condom. We had a terrific sex lifebefore, and we still have good sex. My husband has a colostomy, he hadcancer, he had a cancerous polyp that had spread all through his rectum.And, uh, they felt that he would never be able to have., perform again, but,he surprised me when he got home. He, uhm, I think he would have sexwith no condom. He doesn't enjoy it as much with a condom. But hefigures for six years we got away with it.I don't know what he's going to be like if I'm gone. He figured,like, with this cancer, he's been in remission. They didn't give him a year tolive and that's thirteen years ago. And he always felt like, you know, hewas going before me. And the thought that there's a great possibility thatI'm going before him.. I says, Well, really, the reason you survived wasbecause I was going to need you. So. (laugh) I think, really, if anythinghappened to me he would just as soon go too (laugh). And I say, Well, it's,87uh.. we really can't afford both of us having this (laugh). So, we have sex,but we have sex with a condom.Safe sex had not imposed sufficient stress or inconvenience to interrupt the goodrelations between Laura and her husband. The couple were surprised therefore at theresponse from Laura's previous general practitioner, who still treats her husband:He goes to this doctor that I quit and he asked for [the HIV] test.He had it [again, six months after the first test] and the doctor said to him,Why do you want another test? You were negative. You're not having sexwith Laura anymore are you? And my husband said, Well, of course. Andhe says, What!, he says, that's like playing Russian roulette! He says. Ihope you're using a condom! So, anyway, you've got [an] attitude. I thinkwe've got to educate doctors, too.So far, Laura's health has been relatively good. She has experienced no recurrenceof cancer in her system, but she has endured an ongoing series of minor complaints typicalto HIV:When we got back from Japan, that was a year ago last October, Ihad gotten, I had my flu shots 'cause you get flu shots when you're HIV.Uhm, but I got the flu. I was so sick. And I couldn't get over it. Thecough was so bad. I was coughing and coughing. And I wasn't coughingup blood or anything, but I felt like I'd eaten ashes or something, I'd justget such a restriction there. My doctor sent me to the respirologist at St.Paul's. I had my chest x-rayed. My lungs were okay, but I had the tests for88bronchial asthma. And I have moderate bronchial asthma which is one ofthe things people with HIV can get.I've had eye infections. I have a wart up in my upper eyelid I've hadshaved off. They can't take it right out because you'd lose your eyelashesor something. But they've shaved it down, but it used to scratch my eye.And I've got a cyst in this eye that I can't clean up. I've had it over a yearnow, since a year ago January. I get it cleaned up, I go to antibiotics, bothdrops and cream, but it comes back again in about ten days. So, then Istart the treatment all over again. So, I have an eye specialist for that. Buteye infections are common for people who have HIV. I've been on AZTsince October. I would have gone on it the first of September. I qualified,my T-helper cells had gotten to 300 on July 25th of '89. And when I hadbeen diagnosed, my first ones, well, they were 320, but you couldn't haveAZT until you hit the 300. So, I got, oh, I got up to 400, then I'd go backdown 320, 340, 350. Anyway, as I say, in July I was at 300 so I qualifiedfor the AZT and I was to go on it the first of September, but we had aMediterranean cruise planned.We'd been to Japan, every three months I was running away afterhaving my helpers [T-4 cells] done. And so we went to the Mediterranean.Of course, I couldn't go on AZT and leave the country because you have toget, uh, the first six weeks anyway, you've got to get adjusted to it. Theycan't have you go out of the country and have you anemic. When you firstgo on AZT you must have your blood work done every week. This is so ifthere is a bad reaction they can adjust the dose, transfuse you or take youcompletely off. This is for your own safety. So, I went on it when we gotback. I think was the 14th of October, and on the 16th I was at the clinicand got my first AZT, which they told me to have on an empty stomach.89Try to have it on an empty stomach. And, of course, every four hours,except I can take two at 10:30 at night and my first one is at 6:30 in themorning. And, oh, it made me so nauseous. And I.. I couldn't, I wasthrowing up and I just.. I was determined I was going to take them. Andthen I'd try not to throw up until at least an hour and a half because (laugh)I didn't want to get rid of the pill. So, then I found if I ate somethingbefore I had my pill, and if I eat something about an hour after, it goes fine.I seem to be able to maintain it. And sometimes I don't get sick, but othertimes it comes up, you know, I keep throwing up in my mouth. And ittastes so terrible. Bitter, yeah. Almost more than just, almost like bilebitter. And then that tends to make you feel kind of nauseous. So, I eat alot of crackers.But my weight has stabilized, I'm not losing any weight. And myblood all seems healthy. I have my helper cells done every three months. Ijust had them done and they went up to 440 from 300 so, actually theywere 340 when I had them done in November, I think it was, or December.And [the doctor] said, Well, that they can make an error of 50, so shefigured they could probably still be at 300. And then I had them done thistime, it's up to 440, so the AZT and positive attitude and all that andmeditation.. Uh, I'm a figure of health.Part of Laura's personal health regime consists of taking vitamins:I'm big on vitamins. I take vitamin A, all B's, Zinc, vitamin C. Itake about 2500-3000 mgs of vitamin C. Uhm, I take potassium. I take adiuretic because I fill with water. And I take calcium and magnesium. AndI eat a lot of raw vegetables and lots of fruit. I always took vitamins after,90you know, the cancer, and my husband takes them. We feel that even ifyou urinate them out they still may be doing some good. And we feel thatmaybe if we hadn't been taking vitamins that we may not have survived thecancers we got. We've always taken vitamins, but I take them in a little bitbigger doses now. Not mega doses, uhm, I've always been constipatedsince this surgery and I have an awful time having bowel movementsbecause with no stomach muscles it's awfully hard. I can't push. So, I haveto have a soft stool and I was drinking herb teas and all that, but I foundthat the increased dosage of vitamin C I'm practically normal now and withthe roughage in it, it's fine. But one thing about too much vitamin C, it cangive you diarrhea. Let's see, what else do I do? I like my cranberry juiceand I drink lots of water. I have always drank at least 12 glasses of water aday.In addition to the more conventional medical care and vitamin regime, Lauraparticipates in a number of alternative health practices, including visualization therapy.Visualization therapy is an idea she gained from reading Bernie Siegal's book. It consistsof an imaginative journey inside one's physical system to eliminate the disease entity in thebody:I just close my eyes and I get into my bloodstream and I gosearching all over, just like you know if I'm, uh, Jack and his warriors orwhatever with swords. I go all the way through all my arteries and veinschasing, (laugh), trying to kill all this enemy in me. Well, it hides, it hides.HIV is very sneaky. I was chasing macrophages, no, I was getting mymacrophages, and then I found out that the HIV hides in the macrophages.So, I had to change my tactics then. So I decided I'd just visualize that I91was.. Did you ever see that movie where they had this, like a submarineand they were inside the human body? Well, that's what I was! So,sometimes I'm just like that, I'm in this submarine and I'm going aroundlooking.Laura also carries luck charms in her purse, gathered from friends, relatives andher own travels. They are physical representations of her own and other's wishes for hercontinued good health. Laura does not underestimate the power of good will and positivethinking to heal:I have, uh, a little Japanese good luck charm always in my purse.This is for health, wealth, longevity and everything else. Everything that'sgood. It's from Japan. And that's my wooden nickel somebody gave me, agood friend who's a chemist. That's for good luck. So, I always havethese, and most of the time I wear my healing crystals. I also have a longcrystal that I wear and I rub. I don't wear it everyday, but I wear it quiteoften about three times a week. It was from a cousin of my husband's fromEngland who was very dear to me. She passed away and left it to me. Tome, that's thy healing crystal. And I also have some crystals that were mymother's that, uh, I will wear as, you know, like pearls. And, uh, oh, if myasthma seems bad I always.. I put my crystals on and give them a rub. Andif they weren't any healing crystals, I've made them healing crystals. So,that's all that's important. But I take anything, I take prayers, anything.Anything! I'm not against anything that'll help.With an income of approximately $45,000 a year, and the support of family andfriends, Laura appreciates that she experiences less stress than many others might with her92same illness. Another significant difference between her and the recent majority of peoplesuffering with HIV is the way she contracted the disease. Blood and tissue products havebeen screened since November 1985 making the transmission of HIV via blood transfusiona rare occurrence. People who received the virus through medically assisted means, suchas blood transfusions, tissue transplants or blood serum, as in the case of hemophiliacs, areoften considered to be "innocent victims". Blame and stigma is more often associatedwith cases where the person contacted the disease though sexual contact or needleinjection.When Laura heard of a government sponsored program to compensatehemophiliacs who contracted HIV through infected serum, she wrote directly to the healthminister. She objected to the formalization of a hierarchy of victims of HIV where somewere favored over others:There is a compassionate relief fund that the Federal Government isgoing to give to people that got the AIDS virus through blood transfusionsor blood products. And it's $30,000. a year for four years, total of$120,000, tax free. The government is not accepting responsibility, youwaive any right to sue the government for getting it from a blood productby accepting this money. It is strictly a compassionate relief, cause youcan't get life insurance. So, I wrote a letter to Perrin Beatty [Minister ofHealth]. And I said I felt that everybody that contracted the HIV in thoseearly days deserved to get [money], because they didn't.. there wasn't theeducation. If they wanted to change their lifestyle, they never had theopportunity to do so. I also complained about B.C. being the onlyprovince to charge for AZT. Which is another thing. They don't chargefor cyclosporin if you've had a heart transplant, they don't charge forchemotherapy drugs, but they charge for AZT! I mean, you can't put it on93your extended medical insurance. It's not an approved drug. So, anyway, Icomplained about that in my letter too. I sent copies of the letter to theCanadian AIDS Society, and to PWA Vancouver and AIDS Vancouverand to the B.C. Health Minister and to my MP.Laura received a telephone call from Perrin Beatty's office in response to her letter.She received an application from Beatty's office for the compassionate relief fund.16 Thepolicy was not expanded, however, to include others.Despite the screen of social protection she benefits from as a result of themedically assisted means of her HIV infection, Laura advocates treating all persons withHIV equally. She finds the stereotypes and misconceptions about the disease particularlypernicious and wishes to dispel them. In particular, she is concerned with the notion ofcontagion associated with HIV that can inhibit people from getting close to those whomay need it most:The labeling just tears me apart. We are all persons with HIV andwe must be together as a group. It's all of us that are affected. It's notthese separate groups, prostitutes, drug addicts, hemophiliacs, gays,(laugh) and grandmothers. We are all together. There's no difference. Ifwe were blindfolded and all we could do was hear, I mean, you couldn't seewhat someone.. you couldn't touch them or something. That's who we are:Persons. We're human beings. We are members of the human race,whether we are black, yellow, you name it. We all bleed the same. We'vegot feelings and we all need loving and caring. And I think when you've16Laura was successful in her application for the tax-free compassionate fund. A total of$120,000 awarded in yearly installments increases Laura's yearly income to $70,000 forthe next four years.94got HIV you need lots of loving and caring. You've got to think you'reworthwhile. And if you just have negative things to hear, you're going toloose your self-esteem, if you had it to start with. And you've got to fightto make people realize that, this is a disease, a dreadful plague of a disease.But you can live with it and it's not [easily] contagious. You could drinkout of my mug, my glass, and you're not going to get it. I mean,hemophiliac families, the wives and children aren't getting it. So, I mean,living with my husband, my grandchildren. I mean, I have mygrandchildren all around me, loving, and hugging and kissing them, andmaybe letting them to share my toast. And they're all fine!After hearing her story, it struck me that HIV is not really an obstacle for Laura.Not to belittle what she has struggled with emotionally or the physical problems she hasencountered as a result of her disease, it would seem that there are things in her life Laurafinds more difficult to come to terms with than AIDS. One of these is dealing with theanger and resentment she feels towards the doctor who performed her original breastreconstruction surgery in 1982. Even now Laura is plagued by nightmares of heroperation and finds she often requires the assistance of medication to get to sleep at night:I don't like that doctor that did the surgery on me. I mean, I didn'tlike him before I found out I had HIV. I feel that he conned me and I wasnot happy with him. I'm even less happy with him now. I try not to let thatbother me. Now, it's in my subconscious. I have control of it in thedaytime, but at night, like., your subconscious never sleeps.Perhaps Laura has unfinished business in terms of dealing with her anger from thepast, but she is doing her best not to let this interfere with her wish to get on with her95present. As of April 1992, Laura has lived for over ten years with being HIV positive.She is considered among the AIDS community to be a long term survivor. To view hersituation now as successful survival or pushing the odds is a matter of interpretation.Laura is confident in her own perspective:I have just read everything I could on [HIV and AIDS] to makemyself more knowledgeable and I felt that the more I knew the less I had tobe afraid of. The more you know your enemy, well, you're more at peace.I didn't want to deny the fact. I mean, I'm quite realistic that anythingcould happen. My status could change to full-blown AIDS. I'm positiveenough that I'm not afraid and that there's things that I still want to do. Ithink, well, I've always had fun. I've enjoyed life. Generally, had lot's offriends. I tend to get along with people very well. And, uh, I intend tokeep on doing that. I can't sit down and say, Well, why me? and waste mytime. This is valuable time!96HeatherI made arrangements with Heather for when we would meet over the telephone.The day before our meeting, I took the ferry to Vancouver Island and checked into a smallhotel overlooking the harbour in Victoria. Heather had requested that she meet with meat the hotel. She preferred that I did not come to her house and she felt my hotel was themost private place where we could talk. The morning was best for her, as her five yearold daughter would be in day care.At nine the following morning, I waited in the lobby to greet Heather as she camein. It was raining, but mild. All the ornamental trees along the boulevard were in fullblossom. Although I had only met her once in person at a BC. Task Force meeting inVancouver, I had no trouble recognizing her. Heather came in from the parking lot with asmile, her slim figure wrapped in a coat and her long hair wet with rain. We said ourhellos. I suggested that before we go up to the room, we pick up a tray with some teafrom the restaurant. We did so and soon were settled into comfortable chairs in my room.We only had a couple of hours before check-out time, so we got down to business straightaway.Heather had previously mailed me her signed consent form. I gave back to her aphotocopy of the form, and then set up the tape recorder on the desk beside where wewere sitting. We spoke on tape without interruption, except to top up out tea cups, untilthe housekeeper knocked on the door just after eleven o'clock.Heather had much to say and seemed glad for the opportunity to talk about herexperiences. She has only in the last few months begun to disclose her status to peoplearound her, including her own family. Keeping her status secret has been a burden, butHeather is no stranger to difficult times. She has weathered considerable obstacles in herlifetime; teenage pregnancy, separation from her family, several years in a foster home, abroken marriage, and having to raise a daughter on her own. Resilient and resourceful,97she has an open, lively character and gives one the impression of being much younger thanher 29 years. While there is no doubt that she is strong and competent, in her brave face Isee a fragility in Heather. There is a poignancy about her story and her efforts, despite herillness, to provide the best for her infant daughter.Heather recalls with a certain irony the first time she heard about the AIDS virusand her reaction as a parent:I had heard about a boy having trouble going to school with AIDSin the States before I knew that I was HIV positivel 7. And I thought, Ohmy God! You know, 'cause I had a baby, then she was a little baby, and Ithought, Oh my God, you know, how would I really react? I mean, eventhough your head knows, you know, intellectually you know that you can..cannot catch AIDS from someone by having them teach school, or thestudent next to you, uhm, you know, that fear is still there. That fear inyour heart is still there. And you love your children so much that youwould just not even take the remotest chance that they could ever contactanything like that. And so, you know, my first reaction was, Oh, God, I'mglad that my daughter isn't school age yet, cause I don't have to make thatdecision, cause I wouldn't want her to be in school with someone with17 Heather is referring to the well documented troubles that the Ray family of Arcadia,Florida suffered in 1987. Townspeople attempted to bar the Ray's three HIV-positivehemophiliac children from the local public elementary school. The school board offeredthe boys three hours of tutoring a week if they would stay home, but the Rays felt that itwas inadequate compared to the twenty-five hours a week available in regular school.The family sued the school board and won. A community group was formed, CitizensAgainst AIDS in Schools, and joined with a school spokesman and local parents inexpressing outrage at the decision. Threats against the family increased in frequency andseverity as the children returned to school under the protection of a court order. At theend of the first week that the children attended classes, the Ray family home was dousedwith gasoline and torched. The Rays moved out of town (Corea 1992: 116-117).98AIDS. You know, and then. .(pause) Uhm, you know, now it's verydifferent.I asked Heather to describe to me the circumstances surrounding her diagnosis:Uhm, I.. I never really expected to test positive, even after I wastested. Uhm, and it's even hard for me to.. I have to really think about itnow. It seemed like such a long time ago. LI was, uhm, just talking witha boyfriend one night. We. .we were having a good time and giggling andlaughing about old drug days and experimenting with drugs when we wereteenagers and all the funny things that happened to us. You know, Godaren't we glad we're over that! And, uh..uh, I mentioned that I hadexperimented with heroin.We were talking about what our favorite drugs were. How we hadthe most fun. And I mentioned that, you know, Gee, isn't it too bad.Heroin is my favorite drug, but, of course, you know.. And he..he.. hestopped talking after and actually went white. And it scared him a lot. Ihad never even thought of it. That I may have contacted it. And I'm stillnot even sure if this is what did it.I only tried it one or two times and, I mean, it didn't, it wasn't evenprolonged. But because I wasn't into it, I used someone else's equipment.Because I wasn't into it, I just tried it for fun to see what it was like. It wasgreat, by the way (laugh). Uhm, anyway, uhm, the person that I.. who'sequipment I used, shared with lots of people. So, uh, there was a riskthere. Uhm, so I went to the doctor fully expecting that nothing would behappening, 'cause I was perfectly healthy. And when it came back positive,I was really shocked.99Heather's interview with the doctor who diagnosed her was quite traumatic. Shereceived no pre-test counseling and her doctor was terrifyingly abrupt. Heather is notbitter now. She rationalizes that in 1987, few doctor's had experience dealing with HIVand AIDS, particularly in women:She basically said that I would be real sick within five years and,you know, just. .just kind of sent me out and said, "Well, come back whenyou need help". So, I left the office believing that I had five years to live orthat I'd be very sick within five years.Uhm, too, I think I was only the second patient that she had everseen that had tested positive. She had tested lots of people but they werefine. And, uhm, the only other man that she had seen positive, was dead.So, you know (laugh). Uhm, doctors don't have a lot of information. Youknow, they have very, very basic information. They don't have lots of true,face to face, contact with people, especially women. And I think she wasjust as freaked out as I was, 'cause she didn't know how to treat me.The impact of the diagnosis on Heather was such that she could not come to termswith the possibility of what could happen to her in the future. She did not know what todo next. Fearing the worst for herself and afraid to confide in others, she was paralyzedinto an ongoing state of shock:I think I was in shock. I didn't know what to feel. I was reallynumb. I was.. I was really upset but couldn't show it. I was in a.. I was ina job. I was.. I had to just carry on. Uhm, I'd come home at night.. fromthe time I got home from work, to the time I went to bed, I'd drink. And100get up, and do the whole thing.. I was kind of on automatic. I was really,really unhappy but didn't know what to do about it. I thought that if I toldanybody I'd lose my job, I'd lose my friends, I may have to move out of thecity. I. imagined myself having to go underground. I got reallydepressed. And because I was depressed, I started getting sick, because Iwas depressed. I started getting yeast infections and, stupid little things,that because I was depressed, I was getting run down and I was drinking alot.The thought of telling people scared me. I was really frightened totell people. And this terrible fear of rejection, like they're going to stampeveryone's forehead or we're all going to be sent to a camp.18 And uh.. orelse spend the last two years of my life in a hospital, and it would behorrible, and what about my daughter?! You know, really blown-out-of-proportion fear because of the lack of, you know, really knowing what washappening.In fact, the lack of information and direction Heather.was given by her doctor,assisted her in forming an attitude of denial. Heather found information about AIDS fromnon-medical sources. She mailed away for some literature from an alternative health18 Heather's fear of repressive responses to being HIV positive are not unfounded. Therehas been much talk about harsh measures against people with HIV and AIDS. At a U.S.conference in 1985, a Harvard neurosurgeon and formerly a chief of service at BostonCity Hospital, suggested quarantining persons with AIDS who persisted in "irresponsible"behavior on a state-owned island in Buzzard's Bay that was once a leper colony. In 1986the conservative U.S. writer William F. Buckley, Jr., suggested that persons with AIDSshould be tattooed on the upper arm to protect needle users, and on the buttocks toprotect homosexuals (The underlying assumption to this statement is, of course, that allAIDS sufferers are male.) In 1988 in Canada a medical officer of Health proposed thatquarantine should be considered in some cases (Spurgeon 1988:61). Threat is fact,however, in Cuba where people diagnosed with HIV must live in AIDS sanitariums apartfrom the rest of society (Rudd and Taylor 1992:178).101magazine. The article she received suggested that AIDS was probably just another formof syphilis and not really life threatening. Heather latched on to this possibility. It allowedher to put her multitude of fears aside and continue on with her life, a necessity for her asshe had to make a living to support herself and her daughter.Heather had confided in no-one. However, her doctor requested that she notify allthe people she had slept with in the last ten years. As she did so, she found that none wereinfected. This reinforced her false hope, seeming to confirm that there was really nothingwrong with her. Eventually, however, she came to a new rationalization about how shewas infected. Rather than her brief experimentation with needle use eight years previous,she thought perhaps a more recent incident was the cause. The notion of a more recentinfection actually fit better with her clinical markers at the time of her diagnosis (Heather'sT-4 cell count was over one thousand when she was first diagnosed, indicating a recentcontact with the virus (Pinsky et al 1992:42)):The more I learned about HIV the better I felt. In fact, LI kindawent the other end of the pendulum about six months later. I thought,There's nothing fucking wrong with me!! You know, like this is all been abad joke. You know, I'm fine. It's just a little virus. I could live the rest ofmy life and never know it exists. And, and, uh, and I even got to the pointwhere I was confident that the test was wrong. Because, uhm, when Ifinally did begin to notify people that I had sex with. I sat down andthought, for the last ten years, okay, who have I had sex with? And I hadthis list of about eight or nine people and called them all and said, Look, Ihave the AIDS virus. You need to go and get tested. Everyone wastested. Everyone came out negative. My own daughter came out negative,and I thought, Oh, it's all been a bad dream. I'll go back and get tested.It'll all be.. I'm fine. And I would have passed it [the virus] in that time,102you know. If I was positive and I had unprotected sex with all thesepeople over the years, and one of them for like three years every night, youknow, and if he's not positive then there's something wrong, right? Gotanother test, also came back positive. So that's why I'm thinking it may notbe the drug use at all that, that... you know, I may have got it from a sexpartner just before I was tested, like within the last six months before I wastested. And that would make more sense cause.. no-one has.. I've neverpassed it to anyone.Heather does not focus much on the possible source of her infection. She has atheory, but she will never know for sure. There are two men that she had relations withthat she was not able to locate. What is more significant to Heather is that, as far as sheknows, she has not passed it on to anyone:It's not really important to me, personally, where I got it. It doesn'treally matter. You know, all I have to worry about now is.. is notspreading it to anybody else. I'm curious, but I'm not going to do any moredigging to figure it out.Heather expends considerable energy on efforts to withhold all indications of herHIV status to others. She is terrified of people's response to her. On an emotional level,rejection and isolation are her worst fears. Practically, at the time of her diagnosis,Heather was working as a live-in-nanny and feared any inkling of her status would resultin her immediate expulsion from the home. It was apparent to her employer, however,that something was amiss. Finally, the woman pressed her to talk about what wasobviously bothering her. Heather's first chance to reveal her problem to another person103was a disaster. Even though things worked out in the end, Heather found this incidentconfirmed her fears of rejection and stigmatization:When I first found out, about a month later, I was really unhappy inmy job. I was really unhappy everywhere. I hadn't told anybody and I wasstill keeping it inside and I just hadn't decided what I was going to do aboutit yet. And the lady that I worked for.. uhm, after about a month of thisbehavior, came to see and said, Okay, Lady, you know, this is it. What thehell is going on? Uhm, finally, I broke down and I told her. Sheimmediately went into panic, 'cause I was taking care of her children.Uhm, her and her husband went to the doctor, talked about it, the doctorassured them that unless there was blood involved that her Children couldn'tcatch it. So, she decided to keep her children with me, which was a hugerelief.The matter did not, of course, end there. Although the woman made a promise toprotect Heather's secret, Heather found that more and more people - even strangers - inher neighborhood were pointing her out as the person who "had it". After beingconfronted in the grocery store by someone who she did not know, but who knew abouther HIV, Heather embarked upon a campaign to rectify her damaged reputation. Shedenied her HIV status. She told people it was a mistake, an exaggeration. She did nothave the AIDS virus.After this negative experience, Heather vowed herself to silence, but not withoutcost:Very alienating. Like, it was a big stress keeping it a secretsometimes. Uhm, but when I looked at what would happen if they knew -104uhm, or what I thought would happen if they knew - keeping it secretseemed less of a stress than living with people knowing.Heather left the home where she had been employed as a nanny and decided toopen a day-care. When she found that the doctor who diagnosed her would not sign aninsurance medical she needed to get licensing to operate the new business, she tookdetermined action:The doctor who tested me in the beginning, when I went to her fora physical examination for my day care license, she refused to sign the formthat I was, uhm, physically well. I had passed the physical with flyingcolors. I was very healthy, uhm, but because of the HIV positive, shewouldn't sign my form. I got really pissed off. I went to another doctor.Told him I'd just moved to town. Needed a doctor. Needed a physicalexam to start a job. He did the physical exam. Did a blood work thing,whatever. It all came back perfectly normal. Uhm, he signed the form andI was on my way.So, I kept going back to him, 'cause it was really important to methat people hold me as someone who was healthy. I didn't want to betreated like someone that was sick. I do believe that people's mind setabout you does make a difference. They DO affect you greatly. And itwas really important to me that nobody knew. So he.. I kept going back tohim for anything else that I needed, which were just piddly things, youknow, ear infections, whatever. Uhm, I'd bring my daughter to him. So,he became my family doctor and he didn't even know. Uhm, I always hadin the back of my mind, what if I ever needed surgery? Of course I'd have105to.. I'd have to tell him. You know, but I just.. .that never came up, so Inever did.What Heather did do, however, was to look up the AIDS Vancouver Island (AVI)organization that offered support groups for those living with HIV and AIDS. Ironically,she found this too to be an isolating experience. She was the only female, heterosexual inthe group. Out of her frustration came an idea. Eventually she transformed herdissatisfaction with the services the organization had to offer into new support group forwomen:I went to one of their support groups about six months after Ifound out. And, uhm, it was full of a bunch of gay - angry, gay men - atthe time. There were two of them that were okay, and doing okay. It wasjust bad timing, I'd have to say. It's a wonderful group, but I felt very outof place. I was the only woman. I was the only heterosexual. I was theonly one concerned about kids and that kind of thing. That's just not anissue for gay men. I was really searching out for some positivereinforcement and people that were healing and I found that, at thatmoment, the support group was involved in a bunch of people who weren'thealing. They were angry. They were pissed off. They were pissed offthey were dying. I remember one guy had slept with someone and not toldanybody 'cause he was so pissed off that he had it. You know, and it was..I.. I just couldn't deal with it. I couldn't.. I didn't feel like I was getting anysupport. I feel like I went to the meetings, I poured out a whole bunch ofenergy into trying to support these men into living, 'cause they were soconvinced they were going to die, you know, immediately. And uhm, Ijust.. it didn't work well for me at all. And so, I put in a request to meet106other women. But where are the other women? And I didn't know aboutthe other woman who had tested, like, two years before me. And she didn'tknow about me. So, uhm, I just kept squeaking about it.I went to few., a couple more meetings with the other supportgroup and they were getting better, like those men were settling down andlearning a lot and., and dealing with things. And anger certainly is a veryvalid, uhm, stage that you go through in dealing with this stuff But Iwasn't around to deal with their anger. Uhm, and so they were better, butit still wasn't really what I needed. I really needed women's support. Andso I just kept squeaking at them. I kept saying, Look, get some womentogether, you know. I want., give me some other phone numbers. Givethem my phone number. And it took months for us to finally connect witheach other and meet with each other and it slowly kind of came together.Finally, there were three of us talking on the phone who said, Okay, we'vegot to get.. we've all got to start talking to AVI and get somethinghappening. We want to use their office. We want to.. We want an in. Andthen they found Joan, who was a student willing to facilitate the group.And then the whole thing started. We had our first meeting I think inSeptember.Meeting other women with HIV and MOS was a great emotional relief forHeather. Finally, she felt some sense of recognition and affirmation of her experiences.Despite differences there might be among them, they had many things in common to talkabout and share. Heather made particular friends with the first other woman with HIV shehad ever met:107It was great. It was like, Holy Shit! I'm not the only person in theuniverse! It was neat. She's very much different than me. Uhm, but wehave a major thing in common. And, she's also another woman and I.. I 'mfeeling really connected to other women just because we're women. And itfelt really good to finally meet her. And, uhm, I know that a lot of the stuffthat I went through, she went through the same thing. You know, that itwas sort of a.. all of a sudden all the stuff that I thought I was completelyflicked up, that I thought that I was just going crazy and not handling itwell, and, oh, God, was really normal and everybody went through it. Andeverybody, hopefully.. well, a lot of people, the survivors anyway, popthrough the other side and.. and start learning about what they can do.Despite her role as founding member of the women's support group and hercontact with other HIV positive women, Heather still maintained strict secrecy about herHIV status in her everyday life. Not facing her condition also meant, not successfullyconfronting her fears:I mean, looking back on it now, I put out an enormous amount ofenergy to have people not find out. I have cold and flu symptoms a lot. Infact, I have probably about two to three week break between either a coldor a flu happening. And that's been going on for a year. Explaining aroundthose. Explaining, uhm.. disguising my Thursday night meetings [at AVI].Lying about where I'm going Thursday nights. Most of the energy outputwas just within my own head. Worrying about losing my daycare licenseand what the parents would do. Worrying about my daughter, prejudicesagainst her. Worrying about, uhm, my friends and, uhm, losing them ifthey were to find out, and that sort of thing. And to me, what's more108terrifying than dying, is being, separated from people and having peopleafraid to touch me, or hug me, or be with me, or work with me, or sleepwith me.Heather found herself in a strange position with her friends. She let everybodyknow that she was involved in support work at AVI, with no-one really knowing just howpersonally involved she was. She found herself becoming more interested in trying toeducate others about HIV and AIDS. At the same time, she was trying to escape the topicentirely and live like everybody else. Trying to balance the two perspectives, and whoknew about her and who didn't, was beginning to get complicated:It's funny, because you go to a party and the subject [AIDS] comesup sometimes. They realize that you.. you know a bit about it [because ofher volunteer work] and its like the whole party shuts down and everybodystarts talking about AIDS and asking you questions. Which is good. Whichis great. I'm glad people want to know about it, but, like, I want to party!I don't want to talk about AIDS tonight. I want to have a good time withpeople. I.. I feel like sometimes I sort of have to either dive head first andjust live it everywhere, or.. or not. It's hard to be in between. And whenI'm with the people who know, uhm, it always comes up. When I'm withthe people who don't know, I have to be careful that it doesn't come up.You know, I'm real conscious of what I am saying. And when I'm talkingto the people who don't know, I talk in a third person kind of context. Andwhen I talk to people I who do know, I talk about myselfComparing herself to all the talk she heard at parties and from her friends that don'tknow about her status, makes Heather angry. In her own opinion, she doesn't fit the109stereotype. According to others, as a female, heterosexual, she doesn't fit the stereotypeeither. She rages against this new obstacle in her life:[Before meeting other HIV positive women] I really felt like anoddball. A freak. You know, how come? This is a gay man's disease.How come I have it, you know? What the hell am I doing with this shit,you know? I don't need this shit, you know? In comparison to a lot of thepeople I know who are drug users or a lot more promiscuous, I'm a goodgirl, You know? Sometimes, I look back and I go, God, I should have justgone wild!! I should have had all the fun I wanted, cause I caught, like, theworse thing you can get, you know. I might as well have.. You know,what was the hell of being good all that time? Sometimes I miss being ableto go to Harpo's and pick up a piece of tail. (laugh) But.. Oh, well, youknow. I can live without it.Heather was getting used to feeling fatigued and regularly having flu symptoms.For any problems or infections she would go see her GP, the one who did not know shewas HIV positive. Then, quite suddenly, after two years everything changed for Heather.It started out as just another cold:I got this bad cold, uhm, I went to [the doctor] and said, Look, I'vehad a cold for two months it's getting worse. He said, Yes, you've got asinus infection, and you've got this and that, and that and the other. Gaveme some antibiotics and sent me home. The antibiotics didn't do anything.They made me sicker. Because the antibiotics tear down your immunesystem even more. Uhm, but I still thought, I'll get better. I still thought,I've just got a bad cold and I'll get better.110One morning I woke up, my lips were blue. I'd had troublebreathing all night. My lips and my fingernails were really blue. Uhm, Iwas having trouble staying conscious. Had to breath really hard to notpass out. Called a taxi. Went to the hospital. Checked myself in. Thefirst, uhm.. When they examined me, they took a chest x-ray first of all. Adoctor who was a respiratory specialist came back. The first thing heasked me was, Have you ever used intravenous drugs? Have you everslept with anyone with AIDS? Uhm, have you ever received blood in thelast ten years? Have you ever been in an accident where you receivedblood? And I lied. I was so frightened. I just lied. I just said, NO. No,no, no. No, I'm perfectly healthy. Just, like, give me some pills and sendme home. And when they wouldn't let me leave I started getting.. Theysaid, Look you have to stay in here. My daughter was just at daycare. Ihad no idea I was going to have to stay. And, uhm, I had seven kidsarriving at the door Monday morning [for daycare]. And, uhm, so the shithit the fan so to speak and everything had to come out.Not without a struggle, however. It took two days and a close brush with deathbefore Heather finally gave in and admitted to the respirologist who confronted her thatshe was HIV positive. The news set in motion a flurry of activity. "Everyone wentbonkers", Heather says. The respirologist who thought he recognized her condition hadseen PCP before associated with AIDS, but never in a woman. Heather had already beentreated with two different courses of strong antibiotics, with no effect. Now that she wasproperly diagnosed with PCP, she could be properly treated19.19 Pneumocystis carinii pneumonia is a lung infection from a parasite. Symptoms includefever, cough, rapid breathing and bluish skin (cyanosis). The death rate is near 100% ifuntreated (Glanze 1985:579).111It was a traumatic time for Heather. On the first day she was admitted, she had toscramble to make arrangements for her daughter. It was a difficult decision for her tomake, to ask other people to help her out. She did not consider calling family. They werenot that close. She contacted friends from a woman's support group she belonged to thathad nothing to do with AIDS:2°I phoned people. I phoned my women friends, on my otherwomen's team, and I said, Look, I really need your help. They took daysoff work to take my daughter. Uhm, uhm, some of them make quite a lotof money. That's a lot of money they would lose in a day to, to stay homewith my kid. Uhm, I didn't have daycare arranged for her or anything.They did all that for me. Almost two weeks she bounced from friend tofriend. Called me on the phone every day. Uhm, she came to see me in thehospital only once because I really looked horrid. I had tubes stuffing upmy nose and in both arms and.. that's kind of scary for a five year old. ButI kept in contact with her. They were just wonderful.Heather was too ill to be apprehensive anymore. She fought hard to maintainsecrecy, even to the point of jeopardizing her life. Then she gave in. Fearing the worst aspeople around her found out, she was surprised to find that reactions to her were notnegative. She found hope:Oh, everything changed, everything you know. And it was actuallya huge relief. It was like, okay, everything is going to fall apart.Everybody going to find out. But, you know, what's really going to20 Heather belongs to a local chapter of a women's support group called the SterlingCommunity. The group focuses on issues dealing with men and relationships.112happen? What's.. what's, like, really going to happen? Like, the worsething they can do to me? They can kick me out of my job. They can kickme out of my house. They can.. but really what's going to happen? Aslong as they don't take my daughter away from me. That was the worsething that I could think of happening. There are going to be some peoplethat are going to reject me. Let them reject me. This is, you know, Ican't.. I kind of can't run away from it anymore, you know. And I was verysurprised. Most of the people that I told or that found out, were reallysupportive.Heather found that her GP was supportive of her also. He was informed by thehospital of Heather's diagnosis and came to see her:He was a bit freaked out. And he immediately admitted that he hadno idea what to do and just referred me to other people. Which wasexactly what he should have done. But also he expressed him needing tolearn about it and told me that he would really like me to stay his patientand still liked to be my doctor and that this could be a way for him to learnabout it.. So, I said GREAT! FAR OUT! So, I delivered this enormouspackage of information to his office from my house. And I don't knowhow much of it he'll actually read. He's kinda learning along with me.Not feeling the pressure to hide her status from everybody marked a great changein Heather's life. She is still ambivalent about her illness, however, caught betweenacceptance and struggle:113I've gone back and forth. I.. like I say, there was, like, a two yearperiod there were I thought I was really handling it. I was really healthy.You know, I was, I was functioning normally. And very few people knewand it just sort of when on like it wasn't really there. I went to my meetingsand did that stuff but still felt pretty far removed from people with AIDS.Because I was doing great and na, na, na, na. And, uhm, everything wasgroovy, so to speak, until I got pneumonia and then the realities of havingHIV hit me again, and I went through the same shit all over again. And I'mjust.. I feel like I'm just pulling out of that now. I'm still struggling withcolds and things but, uhm, and I'm on a drug now, pentamadine, to stop thepneumonia and I'm supposed to start AZT in a couple of weeks. So thewhole thing's in my face all over again. And now I'm having to look at itall over again. Uhm, I kind of went from someone who was HIV positiveand healthy and kind of still far removed from people with AIDS, tosomeone with AIDS. And that's., that was a big shift.Heather is the only one of the women in this study who has contracted anopportunistic infection that allows her to be classified as a person with AIDS. Sittingtogether with Heather in the quiet hotel room, hearing her story for the first time, I had tomake a conscious effort not to betray the surge of grief I felt when she told me of herpresent health status:My T-cell count is under that.. that of most people that have cancerand are very ill. My T-cells are very, very low. Uh, uh, when I was firsttested, my cell count was in the thousands. The last cell count I had it was150. You probably know what that means from somebody. So, aroundthe 200 mark they start freaking out. (Laugh) Most people are quite ill114and, uhm, I'm not actually. Like, I struggle with cold things, but I didbefore, you know, I have all my life. So I feel like I was doing.. I was reallyhigh and positive there for a while and I've gone through another dip. It'sdifficult to be positive when you're physically ill. And I was really, reallyHeather's immune system is severely compromised. I found it hard to imagine howeasily the bright spirit before me could be snuffed by what to anyone else might be a trivialhealth problem. Heather is aware now of how information and attitude, particularlydenial, contributed to her current condition:I have to face the fact that there is really something going on.Where before it was, like, Well, I haven't given this to anybody. I'm notsick. Uhm, it was really easy to believe there was nothing happening. Andthere was all this evidence. I had this nice pile.. thick file at home of all thisstuff that says that HIV may not be nothing after all and that its probablysyphilis and that, uh, supporting me and believing that everything was cooland everything was going to be fine. When in fact that's not what washappening at all. And now, you know, I come face to face with, yes, HIVis eating my immune system and I have to do something about it. That'sthe really dangerous thing about not telling someone you're HIV positive.In your fear of the doctors freaking out and all the other stuff, what you dois you don't have the opportunity to prevent yourself from getting [sick].As a result of her illness Heather is required to take pentamadine treatmentsregularly, every two weeks, for the rest of her life. She has a new appreciation of her life115and is adamant about taking more personal action about her health. Included in thatthinking is her will to let others know not to be discouraged by ultimatums about AIDS:Uhm, I'm getting a lot more interested in the.. in the mind-bodyconnection to do with AIDS. I believe a lot of people are dying..thousands of people are dying out of the doctor telling them they will. AndI think that's really, really crucial in people's recovery and living with theviruses is, uhm, you know, believing that they can for one thing and thatthey don't necessarily have to get sick and that there's lots that they can do.Cause it's such a helpless feeling to be terminally ill and that's how yourkind of diagnosed. As being terminally ill or something. And it's aterrifying feeling because of the helplessness of it. And when you start tolearn that there is lots that you can do, it's really exciting.Heather is kinder to herself, health-wise now. She finds taking care of herself tobe a positive experience. She is fighting back against the helplessness:I stay away from negative stuff. I don't read the newspaper. I don'twatch the news. I don't listen to news reports about people with AIDS.I'm interested, but I don't buy them as absolute truth. I know statistics arenot all that accurate. I have a naturopath and we do a vitamin regime and,um, I try and stay away from alcohol and cigarettes. I'm not completelysuccessful in doing that. I don't beat myself all up when I do it. I'mconscious about how much of those things I use. I don't eat a lot of redmeat. I try to keep my system really cleaned out You know, I'm reallyeasy on myself with sleep. If I'm sleepy it doesn't matter what time of dayor night it is, I just sleep. I, you know, I don't automatically take it as a116death sentence. I keep telling myself, look, when I die is really up to me. Iabsolutely believe that mind has a lot more to do with it than the medicalprofession, especially, is willing to look at.That some people now know she has AIDS does not mean that Heather is openwith everyone she meets. She is still selective about who she tells, including her ownfamily. Heather only in the last month made the decision to tell her family of her illness:I still don't just, like, go out and tell people because, uhm, there aresome people that it just does not work to have them know. They're tooafraid themselves. I don't need that kind of energy going on around me.And I don't like people talking about me either, you know? I tell peoplethat love me (laugh), you know, that.. that I know there's a chance thatthey'll understand and they'll support me anyway. But I think that's a reallytransforming moment. When you go from being in hiding to telling people.It was difficult to tell my family.It was harder to tell my family than my girlfriend. Cause if mygirlfriend rejected me, oh, well, I'll get another girlfriend. I can't getanother father or brother, you know. Uhm, I haven't had a lot ofexperience with my father accepting what was happening in my life tobegin with. Ulun, this has been an ongoing thing with my.. Dad was thehardest. My Dad was the hardest. My brothers and my Mom were fine.They were upset, but they educated themselves and they're, they're fine.My Dad was the hardest.Ulun, I thought, what the hell is this guy going to do when I tellhim that I have AIDS? I mean, if he didn't talk to me for eight yearsbecause I got pregnant [as a teenager], what the hell is he going to do. I.. I117fully expected him to kind of just totally draw away from me, you know.He didn't. He didn't, he did the opposite. I.. I hadn't seen my Dad crysince my Mom left him when I was eight years old. He broke down andcried. He hasn't hugged me like that since I was a little girl, (laugh). Littlegirl, you know. And it was a major relief. Uhm, I haven't heard from themsince mind you but (laugh)..All of Heather's relationships have been affected by her HIV status. Particularlyimportant to her are her intimate relations with her boyfriend. Her efforts to maintainsecrecy about her status have helped to create additional complications in her currentrelationship:The man that I was lovers with when I found out, he was great. Hewas like, you know, we really kind of went on this journey together to findout about [HIV]. He really supported me in not buying the doctor'sdiagnosis. He really supported me in not reading newspapers and stayingaway from negative stuff..., and getting into alternative things. And hereally supported me in that he wasn't afraid of me at all. In fact, I think,you know, he should have been.. more than he was. He wasn't afraid of meat all. It was really good for me, you know, to have someone who couldmake love to me and not be afraid.The lover that I had next is the man I'm with now. And he's reallydifficult for me to talk about because, uhm, (pause) I ^ was so convinced,at the point when I met him, that I was perfectly healthy, that I couldn'tpass it, and that HIV was nothing, that I had never been sick with it, or atleast nothing had been connected with it, uhm, and I was really on a roll,really positive and confident, that I didn't tell him.118Uhm, and I'm really sorry that I didn't now. Uh, I know that thatwas wrong of me to make that kind of decision FOR HIM. That I exposedhim without him even knowing about it, which was really wrong. For himto expose himself, knowing about it, is another thing. But when he didn'teven have a chance to say no...I dated him and got to know him really well. I essentially practicedsafe sex with him 99% of the time. I mean there was, like, two nightswhen we were drunk, home from a party. Had a great time. But 99% ofthe time we were practicing safe sex without him even knowing about it,anyway. When I finally did have intercourse with him on a regular basis,condoms were our birth control. But he didn't know that I was HIVpositive.It was r-e-a-1-1-y, r-e-a-1-1-y hard. I drove myself nuts, knowingthat I had to tell him. You know, I kinda.. in my head had, I'm either nevergoing to tell him and he'll never know, 'cause once I've made love with him,that's it. If I haven't told him by then, you can't tell him. How do you tellsomeone that you have exposed them to AIDS knowingly ? On purpose?That's a little.. much. But I did tell him. I fully expected him to run. To bereally angry. I was ready for that. Uhm. He went to his doctor. He pulledaway a bit. He was concerned about me mostly because I was an absolutebasket case. Uhm, he went to his doctor. He was tested. Came backnegative. Of course there was a window period and he had to wait anotherthree months to be tested. He actually waited four or five months and wastested again and was still negative. He's OK2121 Portions of this segment of my interview with Heather appear in Positive Women:Voices of Women Living With AIDS, Andrea Rudd and Darien Taylor, editors (1990),with Heather's permission.119Understandably, her disclosure has had a significant impact on her relationshipwith her boyfriend. In particular their intimate relations:That's the most horrible thing. I mean, I would really love to sithere and tell you that things haven't really changed. But the truth is that itjust totally screwed my sex life. No two ways around it. It just did. Nomatter how wonderful the man is. Since he's known, our sex life's gonedownhill from there. Its gotten worse and worse. Since I've been sick, itsbeen almost nonexistent. Cause he's afraid of me. He's very wonderfulabout it, but he's honest. He can't say he's not afraid of me when he is.He's got three children and a business. He's got too much to take care ofto risk. You know, his head and his heart disagree. So, basically what ishappening with our relationship is that sex is. .that sex is kinda slowlyphasing out and a.. and a good friendship is kinda taking over. Thatprocess has been very slow. I know that's what he's wanted for months andI haven't been able to deal with it. Because what to me looks like rejectionis to him just taking care of himself. (She weeps.) You know. So thatsexual relationship won't survive. There's just. .there may be six monthswhere it's real hard on him and he may get used to it or he may change hismind, but I'm not holding my breath for that. I know that he's... he's kindof . In his head he's wanted out, uh, since I got real sick. He's just wantedout. He just says, This is ridiculous. Why am I exposing myself to this?Heather has many worries about her relationship with her boyfriend. Moreimportant to her than concerns about the outcome of this relationship, however, are herfears about her infant daughter and her daughter's future with a mother with AIDS:120Another thing that I really think about a lot is my daughter. Youknow, what's going to happen to me is what's going to happen to me. Butwhat if I..what if I do die in the next three to five years? She's only fiveyears old, you know? Uhm, I think, God, I've got to live at least ten moreyears because it's going to take that long before this kid's ready to be outon her own. I have to live at least... You know, when I had this kid, Imade a contract. I had a contract with the universe that I would take careof her. And so, you know, I've got to live ten years because she needs meto take care of her. It's not fair for me to bring her into the world and thenleave her. It's.. it's not okay with me. At all. So, I think a lot about her andI think the deepest sadness around the whole thing for me is my daughter.She knows that I'm sick, but she's only five. She cannotunderstand, you know? And because.. I'm very discreet about who I tell. Idon't want to tell her, you know, Mommy has AIDS, because she's goingto go to daycare and say, My Mommy has AIDS. You know, that's kindof .. She knows that I'm sick and she knows that, uhm, there are sometimes when I'm too sick to be there for her. And that it's not that I don'twant to be. I just don't feel good. And, uh, it's terrible, but she's gettingused to it. She's, uhm.. I always had a daycare, so she never had to be indaycare. Like, that's why I created my day care. That's why I got into it.Because I didn't want to put her in daycare and go to work. Like, I didn'thave a kid to pay someone else to raise her. So, I just took more kids inand eventually became licensed because I had five kids anyway. And, uhm,she's had to go to someone else's daycare so that I can sleep in theafternoon. She's still a bit too young to be unsupervised in the house for a121two or three hour block, which has been hard for her. She's inkindergarten. Next year will be better because she's in school all day.She knows something's up. Kids are very sensitive and veryintuitive. They're very open. They.. she can.. she can, I think, yeah, itmakes her sad. She says, Mom it makes me sad when your sick.. I say,Yeah, it makes me sad when I'm sick too, (laugh) but I'm doing my best,and I'll.. I'll get better.". And she says, "Oh good".Heather suffers a great sense of loss over the thought of not having more children.She finds it difficult to come to terms with perhaps not being able to fulfill all her dreamsof having a family in the time she has left:I think I've, you know, very slowly and with difficulty, decided notto have any more kids, because I'm really a kid person. I am grateful forthe child I have. But there is no sense in bringing more children in when Imay not survive the pregnancy, or survive even their infancy.I wanted to complete my family. I don't like being a single parent.I wanted to get married, have a couple of more kids, buy a house and dowhat I wanted to do in the first place. And since I've been ill, that's kindof..ah.. fallen by the wayside. It's not likely that I will have more kids now,because I'm not willing to deal with what I would have to deal with if mychild were born HIV positive. I know women who are HIV positive whoare having kids and its because they're willing to deal with that, and that'sfine. That's great. If they're willing to deal with it, go for it. I'm not. Iwould not survive losing a baby. It would just absolutely tear me up.122I really want four or five kids. But I think that I'm having to justput my energy elsewhere right now. So, I'm probably NOT going to getmarried and I'm probably NOT going to have any more kids.Heather is adamant about the need for support groups specifically for women.Particularly at the times when she finds her role as single parent overwhelming due to theextra demands of her illness, she knows she can reach out to find what she needs to getby:Women need a lot of support around their families. Their kids.Uhm, what do you do with your husband? The one HIV positive womanthat I know who is pregnant, her husband is HIV negative. You know,how do they cope with that? Women need to be really encouraged tocontact other women, 'cause our power is really in networking. I think Iwould have gone bonkers by now if I didn't have the other women to talkto. Cause my potential for making good money is a lot less. I'm not ableto work as hard. I'm a lot more tired. I could never do the job I used todo. I could never do day-care for ten hours a day. I physically couldn't doit. So, income is a major problem. Taking care of my daughter when I feelsick is a major problem. (laugh) It's very lonely. That's why its veryimportant to get hold of other women and encourage each other. That wehave lots of work to do, that life goes on..That all HIV positive women may not be interested or willing to join a supportgroup comes as no surprise to Heather. She can relate to their need to distancethemselves from any reflection of what soon could be their own problems and fears. In123hindsight, Heather feels that denial is a common response that each person must growthrough, as she did, to a full and open confrontation of AIDS:I've talked to [some other HIV positive women] on the phone.They're not interested in being involved with the AIDS movement becausethey're still where I was, where the less they have to do about it, the lessthey have to think about it, the less they're effected by it.. I feel like,Sooner or later its going to catch up with you! It's fine that they're healthy.Its great that they're healthy. They don't want support. You can't forcesomeone to, you know, be part of support, but what happened to me wasthat I waited a long time and my immune system was really destroyed by allthat time that I did not have treatment that I could have had. And I wouldhave been better off. Because I figured, mentally, it was more harm for meto hang out with [other] people with AIDS. It's really, really depressing. IfI ever met anyone [else] with AIDS I thought, Oh, my God! I was just in adepression for a week, till I completely removed myself from it again.Now I work right in the office. I'm knee deep in this stuff. I love it! It'slike I can't do enough. I can't talk enough about it and I can't meet enoughpeople. [My attitude] has completely shifted. And what shifted that isbeing sick and having to face it, having to tell people. Its just.. like givingup fighting it. This is. .this is part of my life now. I've accepted it. I'mliving with it. I'm not just running away from it, pretending that it's notthere.Coming to terms with her own illness has fired in Heather a need to educate othersabout HIV and AIDS. She feels there is a need for more women to be visible and to speak124out about their experiences living with HIV and AIDS. She cautions that there are goodreasons why more women aren't speaking out:Fear of persecution. Someone could come and bomb your house.That sort of shit still goes on. They could hassle your kids at school. Youcan get fired from your job. Mostly, people loose their job. Or otherpeople refuse to work with them and quit. Uhm, occasionally, uhm, peoplewill get a lot of nasty treatment if they live in close quarters with people.Like if they live in communal homes, people will move out, or people willbe afraid to come in their homes, and stuff like that. It seems like people'semotions have not caught up with the facts yet. Like, in your head thefacts are that you can't get it from that kind of stuff, but their emotionalstate still plays a part in how they feel. So, I think the scariest thing forpeople about going public, besides from not wanting to hurt their loversand friends, is losing their job. It makes a major career difference. (laugh)And the fear of people being prejudiced.Heather has begun herself to participate in panel discussions about HIV and AIDS.Her intention was to take part as a resource person only and remain anonymous as an HIVpositive person. At one engagement, speaking to a large group of senior high schoolstudents, she suddenly found herself taking a more active role:There were 200 grade eleven and twelve students in a gym and Iwas on a kind of a panel of people. And they were allowed to askanonymously, we'd sent out papers and they'd ask questions and stuff, and Igot so moved - actually frustrated - by their lack of knowing about me thatI did tell them my status when I didn't plan on doing that. And everyone125was quite blown away that I did that. Here I just told 200 people, youknow. I had trouble telling someone that lived next door, but I just told200 kids and I, (laugh) you know? But the whole thing completely shiftedas soon as I said that. All of a sudden, everyone started really listening tome. And I felt a lot of power in it. Uhm, there are places when that's justnot smart for me to do that, and I still have an impact [even if I don'tspeak]. But there's no doubt that if they know I'm HIV positive. .whenyou're talking in your own context, from your own self, there's. .there's a lotmore to it than if your saying, Well, these people here, or Statistics say, orI've heard. .. it's different. Everyone else on the panel was either anurse or at least fifteen or seventeen years older than them, uhm, and theone man who did have AIDS was a gay man, which a lot of the kids, evenif they are gay, aren't real in touch with yet and don't really identify with.Yeah, high school. Uhm, and here I walk in, in my jeans and my tie dye t-shirt, looking pretty normal. I'm not that much older than them. It wasn'tthat long ago that I was in high school, you know, or high school age. AndI say, Look. I got it. I wasn't doing anything weird. You can get it fromsex. Uhm, and it REALLY hits home that they're at risk, when beforethey don't think that they're at risk. So, there's a lot of power in that.It has to be addressed publicly and openly. It has to start being apriority, you know, in education. Uhm, everybody that walks the street hasto know the risks. EVERYBODY. Everybody has to really get it: that just'cause they're straight, just cause they're white, middle-class and they don'tdo drugs, whatever, doesn't mean that they won't get it.126Heather does not want to talk about dying. She dismisses the topic quickly, sayingshe's not ready, she has too much to do. She has to raise her daughter. Heather has a lotto say about living:It's actually an enormous opportunity for people. I mean, when youget through all your own shit and your own fear of rejection and all theanger that you go through getting this in the first place, and, you know,and you learn about the technical stuff, understand a little bit about what'shappening in your body and what you can do about it, when you getthrough all that stuff, really coming through the other side, is realizing whata gift it is. Because it really is. I mean, even if I only live five more years,I'm going to really live it. At least now, my priorities are straight. I reallyfeel everything. If I want to cry, I go ahead and cry. I don't care where Iam. If I want to yell and scream, I do it. I do less dishes and I go outsidemore. I grow more flowers and I spend more time with my daughter.Really quality time. I mean, I used to spend all day with her, but I wasworking. Now, when I'm with her, I'm really with her. I really listen towhat she has to say. I really answer her questions. I really feel things.You know, even if I only live five more years, I'm really living it.I'm really feeling them. And, uhm, to me, that's more valuable than livinganother fifty years and playing the game. You know, chasing money takingcare of na, na, na, na, all the drama that goes on that just automaticallystops when something like this happens. And uhm, my relationships withpeople now are incredible, you know. There's a connection on such a levelthat I never knew existed before. The only thing I could compare it with is,you know, that intimate, close magic feeling that you have moments ofwith your lover? That kind of stuff happens with everybody. Like, you127really feel in love, in a heart connection with everybody. Even someonewho's really fucked up or misinformed, even someone who's acting in away that's inappropriate or that you don't particularly like, you love themanyway, cause you understand. Like you really hear what they're saying.You love the person, you may not approve of what they are doing, you thelove the person. Who they are. You know who the people really are, andyou begin to talk to that person from a place of who they really are and youstart disregarding the other stuff which used to really deeply affect me.Now, its like it just flies over me and I start talking to who they really are.And, uh.. I slip. There's times when I'm depressed. There's timeswhen I'm angry. There's times when I'm sick of struggling. But what'sstronger and what's under it is.. is really my deep commitment to living andwhat I want to do in the next five years - ten years. Who I want to bearound, what I want to spend my time doing. It's.. it really changes yourpriorities (laugh). And, uhm, it's scary and it's like living on the edge whenyou tell people, uhm, but it's.. I look at it like I'm giving them anopportunity to really grow a lot. Immediately. I'm giving them anopportunity to get through their own fear to learn about something reallyimportant, cause lots of times people don't really take the time to learnabout it until they know someone with it or they're affected personallysomehow.You know, I like that, that, uhm, expression "AIDS with a face".You know, nobody really pays much attention to AIDS until it has a face,until there's someone sitting in front of you, until your cousin has it, oryour son's friend has it, or, uhm, someone you know dies of it. It's adifferent thing when you know somebody. And then you learn about it.128And the more people that I tell, the more people will learn about it. Themore people that I have an opportunity touch.129JulieI had arranged to interview Julie on the same day as I spoke to Heather. Julie alsolives on Vancouver Island. She requested that I not come to her house until theafternoon. As a psychiatric nurse, Julie was used to working the night shift. Even thoughshe isn't working now, she still maintains her late night hours.^I arrived in herneighbourhood just outside the city at one PM. Her small house is set back from thestreet behind large bushes. As I walked up to the porch, I noticed that the blinds in thefront window were drawn. I rang the doorbell and waited. After a few minutes Iwondered whether Julie had forgotten our meeting. I had spoken to her on the telephonethe day before I came to the Island. I had not called, however, to confirm ourappointment that morning. I knocked on the door a few times. A cat appeared from thegarden and stood with me on the step. Finally, the front door opened and Julie stuck herhead out the door. I introduced myself. Julie told me she had been sleeping. I could seeshe was still in her house coat and wondered whether I should come back later. She saidthat it was not a problem and pushed the screen door back to let me in.We had not met in person before. We had corresponded through the mail andspoken together on the telephone. Julie had sent me an article from a local newspaperwritten about her from an interview she had given the previous year22. I had anadvantage then over her, as I knew something about her background and circumstances.Both from the article and in person, she struck me as strong and self-possessed, also avery private person. Julie did not, on the other hand, have an opportunity to know muchabout myself, except that which I had tried to convey through my written request forvolunteers and our few conversations over the telephone.22 Julie was interviewed by Leslie Campbell and featured in the Profile section of FocusOn Women (April 1990, Vol. 2, No. 27) in an article entitled "Growth, Hope and AIDS".130She went about her morning routine almost as if I wasn't there. She asked me toexcuse the disorder of her home, as she had only recently moved. The house lookedcomfortably cluttered, a large piano dominated the living room. She built a fire in thefireplace, leaving to go outside for a few minutes to cut some kindling. I feltuncomfortable that she was not prepared for my arrival. I stood about awkwardly. I triedto make conversation, following Julie to the kitchen where she prepared her morningregime of vitamin pills. I knew she had several passions: music, she sings in two choirs,playing bridge, she takes part in tournaments, and gardening. In her mid-forties and a self-described loner, Julie says she "doesn't care for chit chat" or "gatherings of more than twopeople". She speaks slowly and purposefully in a low voice that carries the lilt of herEuropean origin. I watched her swallow a small dispensing cup full of vitamins, several ata time. She put the water on for tea and we went to the living room.We sat together side by side, with a small table between us. I returned to Julie hercopy of the consent form and reviewed the terms of our agreement After setting up mytape recorder on the table, I found that with Julie's soft voice and her position in thelounging chair, I was not able to pick up her voice clearly. I suggested that, as myrecorder was the small, hand held variety, she could place it in her lap as she spoke.Before doing so, she produced her own tape recorder and set it up on the table betweenus. I was taken aback, yet at the same time appreciative of the turn of events where theinterviewer becomes interviewee as well. I told Julie that it was not necessary for her tomake her own tape, as I would be supplying her with a copy of mine. She insisted,however, and I acquiesced.I realized from her overall cautious response to me that I should have anticipated alonger interview time, to allow for us to get to know each other better. As it turned out,over an hour passed before we actually started to tape the interview. As I had alreadymade arrangements to catch the 4 o'clock ferry back to the mainland, we had little over anhour within which to conduct the interview itself. Julie is a thoughtful person of relatively131few words. Initially, I felt that perhaps our time together had not been that successful.However, when I eventually came to transcribe the the tape of our session, I wasimpressed again by the impact and richness of stories told in the first person.Before we finally settled down with mugs of tea and tape recorders, Julie offeredto show me a video of a news spot she had recently done on a local TV program. 23 Wewent to her bedroom, where the TV was and watched the short clip sitting on the end ofher king-sized waterbed. I noticed that in the article that she had sent me, in the news clip,and in our own conversations so far, she always avoided mentioning how she contractedHIV. On the news program she said that it was too personal, but qualified that it was notthrough either drug use or promiscuity.When I asked Julie about the circumstances surrounding her diagnosis, she toldme that she considers how she was exposed to be "confidential" information. Her reasonsare that she feels how a person acquired the virus is "irrelevant, except to that person",and that she doesn't like for people to judge those infected as "innocent' or "not innocent"according to their story. I was prepared for Julie not to speak further, but she offered todescribe what had occurred:I found that I had been exposed in the fall of '85. When testing hadfirst come out, or shortly thereafter. And, uh, I was quite shocked. How Iwas exposed? It was through artificial insemination. And I got a letterfrom the doctor that, ah, one of the donors had tested positive, that I hadbeen exposed to him, and that I should get tested. The testing was still inits very early stages and he referred me to a Vancouver doctor. Uh, andthen I found out that my GP could arrange for it, too, so I went and had itdone by my GP.23 Julie appeared on CHECK TV, Daily Edition on April 16, 1990.132I was struck by the early date of her diagnosis, and the unusual and tragiccircumstances of how she contracted the disease. Only a few cases of AIDS had beenreported in Canada in 1985, and I had never heard of a woman being infected in thismanner.Julie had been seeing a specialist on the mainland to try and get pregnant. She hasalways wanted children. A working professional who owns her own home, Julie didn'tfeel that being single should stand in her way. The artificial insemination was notsuccessful. It was six months after her last insemination, and shortly after her 40thbirthday, that the specialist contacted her about her potential risk from an infected donor.Julie decided to go see her GP about taking an HIV test. She had heard about AIDS,enough to know it was a matter for concern. Her doctor's response to her requestsurprised her:[The doctor] tried to talk me out of it. Yeah. He said, There aresocial and insurance ramifications and it might be better not to know. AndI said, No, way! I was almost mad at him. I just [laugh].. I wanted toknow. I couldn't possibly not know. Ramifications or not. So, I took thetest. There was some - quite a bit - of hope that it would turn out negativebecause, I was under the impression that it was not easy to, urn, to get it.For women to get it. But that was probably a misconception about, uh,homosexuals. You know, because most of the men who had it at the timewere homosexuals.Julie was lead to believe that she really didn't have to worry too much about thisissue. I was more of a matter of going though a routine check. She was to be rudelysurprised by her test results:133Just before Christmas I found out that it was positive and I was justtotally devastated. More than just devastated, I was just .. gone. I wentblank. I wasn't home. I was very closed. I barely functioned at work. Iwas, on the one hand, steadily preoccupied, on the other hand, I was... Iwas totally imprisoned. I built a self-made prison. Locked myself up.[laugh] And sometimes I felt that if I went and did my gardening I wouldbe able to get out of that. And that was a big illusion because when I gotinto gardening I got into the dilemma of, Am I going to plant annuals so Ican see them grow this year, or am I going to plant bushes and things thattake long to grow that I may never see grow old? So, you know, I wasback to the same thing again. Doom and gloom. And every little symptomI had, you know, I thought, Oh, this is it.Unprepared for the possibility of her test results coming back positive, Julie waseven less prepared to deal with the concequences. She feels her doctor did little toenlighten her about what to expect from the disease. No support or resources wereavailable. She remembers her doctor's response to her test results as follows:Uhm, well, O.K. The results are, you are positive. That doesn'tmean that you are going to have AIDS, blah, blah, blah. And when Iexpressed doubts and concerns, he just patted me on the back and said,You'll be alright. So, I thought, Oh, I see. I'm on my own now am I?Julie said she felt "like a leper" and particularly isolated as a woman, because sheonly heard of AIDS as a man's disease. She planned to keep her HIV status a secret. Oneof her girlfriends remembered to ask her how her appointment went:134Well, my friend happened to find out because I was getting theresults that day and it so happened that I drove her home. I wasn't goingto tell her, but she remembered and she asked. And I told her. But I didn'ttell anybody else. Even fairly close friends, I couldn't tell. I was evenafraid that the friend that I told here wouldn't have me over again. She haschildren, you know, and some people are paranoid about children andAIDS and, although I realize that she is not like that, it still went throughmy mind. Not for a long time. I didn't tell a soul until I was feeling good.Yes. I felt contagious, you know. I wanted to disappear. And I didn'twant to have anything to do with anybody because if they knew theywouldn't have anything to do with me. And here I was, a woman. NobodyI knew had AIDS or was HIV positive. And so, people.. I was probablythe first that they would know and they just wouldn't have anything to dowith me. That was my conclusion.Julie sought out information about HIV and AIDS at the public library. She didn'tfind it all that helpful. She recalls seeing a training video about AIDS at the hospitalwhere she works and remembers that the images of people suffering terminal stages ofAIDS came back at this time to haunt her:[The images] were of people that have wasted away, and weresuffering from malnutrition, and couldn't keep anything down, and hadlesions all over their body, and couldn't even stand to have the bed sheet onit, and things like that. It was just terrible. So, you wonder, am I going toend up like that? When? At least, at that time I did. Now I don't care.135Julie decided to concentrate on looking up material on subjects she was morefamiliar with from her own work experience. What she was looking for was strategies shecould use for coming to terms with her illness emotionally:I found it hard to understand this retrovirus business. I still don'tunderstand it. I was more interested in finding out about dying and cancer.And cancers are close to AIDS in many ways. So, I found out more aboutcancer, the psychological aspects of it, not the physical aspects, and peoplewho have survived cancer and things like that. What makes peoplesurvive.Julie found a major turn around in her approach toward her illness came almost ayear after her diagnosis through a situation that roused her anger:My dentist said, Sorry, I can't treat you. I had told him in Januarythat I was positive and he said, Oh, that's no problem. Hepatitis is a worseproblem. It's no problem. And then in September or so he phoned me andsaid, We can't treat you at the office anymore, because I feel I have to tellthe girls. And if I tell them then they'll refuse to treat you. They'll justfreak out. And, uh, of course, that was upsetting and maddening because Ithought dental hygienists and people like that, they had an association, andthey were professionals, and they would be informed, and they would be,uh, under obligation to treat people, like we are, like nurses, in completeconfidentiality.I also saw a peridontist. When I went to see him next, he knew mydentist had jinxed me, and he said, I don't understand why he did that?And I said, Can you help me find another dentist, 'cause I'm a little afraid?136And he did. He found me another dentist who was not intimidated byAIDS or HIV. And then - surprise, surprise - I made a comment to thegirl [at the peridontist's office] who was doing my teeth and she apparentlydidn't know what I was talking about, so I took it all back. And after I'dleft, she promptly went and asked the peridontist what this was all aboutand he told her. And she walked off the job. And [the peridontist] phonedme, Sorry, I can't treat you anymore. And to this day [my dentist] has beentrying to get [the peridontist to see me again.] And this peridontist saidthat there is no peridontist in Victoria who will treat me. However, he willtreat me outside of office hours, like on Saturday morning at 8 o'clock.Which I have done once, but its too stressful for me because it doesn't fit inwith my schedule.Julie had chosen not to reveal her status to others, except in the case of the healthprofessionals who treated her. She thought it was only responsible for her to do so, andshe expected she could depend upon their professionalism and confidentiality. Theresponse from her dentist and peridontist seemed more than rejection, it was also betrayal.Julie felt that these health professionals, no less than herself in her professional role as anurse, had a code of conduct they were expected to uphold. Her case should not be anexception. It was no comfort to her that the peridontist himself said he had no problemwith the situation, since he could not bring himself to inform or educate his staffThe outrage Julie felt shifted her thinking, reminding her that, in spite of her illness,she was still a person and she still had rights. She went so far as to contact a lawyer, andconsidered taking legal action. Her invigorated spirit was put to its best use in a newaggressive attitude towards her illness. Julie said she decided to fight back. She cameacross a book that seemed just right for her because it gave guidelines for how she could137go about doing just that. The book, The Immune Power Diet, gave recommendations forvitamin doses that could help to maintain one's immune system:So, whereas before I'd heard about vitamin this being good for theimmune system and this being good, like zinc, that was all fine, but howmuch zinc, you know? How much was enough? 10 milligrams? 70milligrams? What? So, this book gave me guidelines about how tocombine it, and what goes and all that. And I made it into a bit of a.. aproject. A positive project to figure out the combinations of things. Likeyou get a multimineral pill which has a lot of everything, but it might nothave enough of this, but it might have too much of that. So, I would figureout ways to make it right, that would be the cheapest and the easiest. AndI really enjoyed doing that, you know. I was really involved in that. Oh,now I've got something to put my teeth into! And I also felt that I wasn'tjust waiting for "IT" to get to me, I was out to get "IT". That was the bigturn-around. It didn't really matter if the vitamins helped, it was mypsychological turn-around that was important.Once Julie felt she was getting in control of herself again, she felt confident enoughto handle the risk of sharing the knowledge of her illness with others:-^It was after Christmas, so that was over a year, that I started tellingsome of my friends. Like, the ones in Vancouver. I had seen them, but Ihadn't told them. And this time I told them. But now I could be positive.Its much easier to tell somebody when you can tell it in a positive way,rather than, Oh, dear!, you know, I'm just devastated! You can't talk topeople when you feel like that. Then you feel somewhat excited and you've138got a grip on things, then you can say, Well, I've been through this mess,but I've come out of it okay. And I've got a bit of news (laugh).. somenews to tell you. They were okay. They took it, uh..well, not lightly, butthey didn't make a big deal of it either. It spurred their interest in HIV andAIDS.As it had affected other aspects of her life, Julie found that being HIV positive hadan affect on her sexuality. Although she was not in an intimate relationship with anyone atthe time of her diagnosis, she had not been closed to such a possibility. After herdiagnosis she found herself avoiding men:Well, it was a (laugh) sub-conscious thing. Like, uh, I wasn't readyto deal with that issue - having to deal with HIV and the possibility ofrejection - within a relationship. I didn't know what to do with it. So, Iforgot about men and my body sort of did it for me. It protected me. And,you know, my sex urge just went out the window. Uhm, now I feel that Icould handle a man. A relationship.I asked Julie whether she made contact with the local support group for personswith AIDS, AID Vancouver Island. She said she found out about the organization shortlyafter her diagnosis, but was initially cautious about contacting them. She wonderedwhether the group would be welcoming to her as a woman:I first called them a month or so after I had found out my status.And that was with a lot of fear and trepidation 'cause I didn't know whowas AIDS Vancouver Island. And it was at the time, five years ago, whenit was sort of a one man office and they had a line open evenings between139seven and nine. And not all evenings either. So, I phoned and I asked,Who are you? You know, who is AVI? And I didn't quite like the answer.There was a bit of an emphasis on gay men. And I thought (sigh), I'm nota gay man. And the person I talked to really wasn't listening to me as muchas he wanted to impart information. After this first question, I just wantedhim to listen and he didn't so I thought, scratch it. I probably got this froma gay person who wasn't being honest and put me at risk. I don't want toget involved with a bunch of gay people. That's where I was at then.And then later on, when I got into the vitamin business (laugh) Imade contact again with AVI and I talked with someone who was moreappropriate, I guess. And they were just starting up a support group andwas I interested in joining. And I said, Yeah. Gay men or no gay men,that's fine. I was over that. I just wanted to know other people who hadthe same problem. Who were living with the same thing. And I did, and itwas a very good group. All the people were very positive and responsible.And neat people. And the group was very inspiring. It helped me findmore things that I could do for myself.Julie practices a personalized health regime that includes attention to her diet,vitamins pills, surrounding herself with natural, rather than man-made, materials,consultations with a naturopath and a magnetic healer, and attempting to cut down onsmoking:Well, over the years I've done the vitamins and I've persisted withthem. I've been searching for the right kind of diet. I'm not sure that I'vefound it, but I've been searching (laugh). I do my best. Uhm. From wayback when I decided not to wear anything that is not cotton. At least not140next to my body. Or sleep on anything that is not natural. I've got awaterbed, but I have I don't know how many layers of woolen blanketsunderneath and a cotton thing. And when I remember, I turn the heater offbefore I go to bed, so I don't have the magnetic field.Vitamins. Diet. Uhm, no alcohol, no.. Well, almost no sugar. Atleast I avoid it. No meat or animal protein, except under duress.[Smoking?] Uhm. I've been struggling with that. I've quit about threetimes in the last three years or so. And it hasn't lasted. I quit a month agoand it didn't last. I was okay for about a week and then I didn't manage.But the times before I've quit for longer. So, I'll keep on plugging at it. It'smy only vice.Ah, I started.. I got a juicer and I started, when I had time andwhen I was so inclined, I started making vegetable juice. And I really feltpsychologically that that was of benefit. To have the raw, fresh juice.When, you know, I can't eat half a pound of cabbage, or a half a pound ofcarrots or even a combination. I mean, its just too much. But in juice youcan eat a lot. Mind you, you don't get the fibre, but you get the enzymesand all the other goodies. So, that has been a positive thing I did formyselfJulie enjoyed the health regime she took on. She found it empowering. Herdoctor had suggested that she should check back with him on a regular basis every fewmonths to follow up on the progress of her disease. Julie decided not to. She says shethought, Why? There's nothing they can do for me anyways, so why focus on it? Insteadshe sought out a naturopath:141I didn't know what they were at first, so I finally got over thathurdle and went to see one. And I liked what they had to say and whatthey were doing. They did not throw up their arms about HIV. So thatwas nice. They helped me find things to help myself; you know, diet-wiseand vitamin-wise. And other things I didn't do, like take a walk every day.(laugh) I do my garden every day.She did, however, go to Vancouver to see a blood specialist at St. Paul's Hospitalat her lawyer's recommendation. She needed to have the standard blood work up done sothat the doctors could follow the impact of HIV on her system:Ah, I went to see a doctor in Vancouver who is connected with St.Paul's to get the tests done for T-4 cell count. You can't get it done inVictoria. And that's over a year ago and my T-4 cells were beautiful!They were just wonderful. And they said I was good for another year. So,I was all happy and I thought well, maybe I won't have to get AIDS. I canjust go on being HIV positive. I made plans for moving. I moved here inOctober. I had lived in Sydney for 18 years and owned my own house.The doctor's report on Julie's T-4 cell count seemed very encouraging to Julie.Her T-4 cell count was 1,090. She felt under control. She felt she was adjusting well toher new situation and, perhaps there would be no problems for her. She moved herresidence, bringing with her all the shrubbery she could transport as well as a supply ofspecial compost material she had laboured to create. She had chosen the new propertybecause it had a large yard, and it was closer to work, her clubs and the support group. Itwas also easier on her financially because of the smaller mortgage, shorter commute towork and less wear on the car. During this time she maintained a busy evening-shift work142schedule at the hospital and continued to take part in her favorite extra curricular activitiesoutside of gardening: choir and bridge. She was settled in her new home by Christmas.Just after Christmas she flew to Reno, Nevada to attend a bridge tournament:On the way, I was very tired. Even in the airport. I'd brought abook and I was going to read it, because I'm not someone who can donothing, even at an airport. So, I brought a book, but I couldn't even readthe book! I just.. Mind you, I hadn't had a very good sleep, I just closedmy eyes. I couldn't sleep either. But all I could do was just sit there withmy eyes closed. And the same on the plane. I was just soo tired. Then Ithought, Well, that's probably the move and the winter blues. Usually, inthe winter I crash. I feel somewhat lethargic, whatever. It's the quiet afterthe storm. (laugh) I'd had my excitement and now I'd have to crash. And Iwent to the bridge tournament and, uh, inbetween sessions - and thesessions started at 1:00 PM until about 4:30 or 5:00 and start again atabout 8:00 til 11:00 or 12:00 - in-between the sessions you usually go andhave dinner, but I went and had a sleep. I felt I needed it. I never thoughtanything of it either.And then I came home after a week and I had to go back to workright the next day and I was s000 wiped. After another day and I was s000wiped, I took two days off, just because I was so wiped. And that'sunusual because I've never taken sick days off just because I'm tired. But Istill didn't think anything of it. And I went off in another week or two tothe Vancouver bridge tournament, which I hadn't realized was following soclosely after Reno, or I wouldn't have booked Reno. I couldn't not go toVancouver because it's so close by. And by that time I had learned to beeasier on myself and I didn't book myself all the games. I, uh.. When there143was an opportunity, I would play only in the evening. In the afternoon Iwent to bed.While she was over in Vancouver, Julie decided to contact the blood specialist atSt. Paul's. She had been told to come back in a year. She was slightly overdue for herappointment then, as a year had passed as of the previous November:So I went back to him. And he did my T-4 count. That was after,just after the tournament and I hadn't slept well. I think I'd had coffee theday before and I had been awake til all hours of the morning. I hadn't had agood sleep. And I was wiped anyways. He examined me, and then hesaid, Well, your T-4 count [has] dropped a lot from last time and you're onthe verge of qualifying for AZT and I think that if I ask [ the doctor whoreviews the qualifications for AZT] about it he'll approve it 'cause its such adrop. [Her T-4 count was 510 or 520. By this time a count of 500qualifies a person for AZT in British Columbia.] And I hardly heard whathe was saying. I was thinking, I don't understand why there has been adrop! I've been taking care of myself. I've been so good to myself. Whyhas this gone so low!? And, uh, (sigh) I didn't quite understand why hewas talking about AZT. And he explained about AZT, that, you know, ithelps more when you go on it early and blah, blah, blah. And he drew melittle graphs. And, you know, why is my count so low? Why don't youshut up and tell me that? Right?Julie was plunged into crisis in an instant. She remembers little of what the doctorsaid to her after his initial pronouncement. She was tired and in shock, with a long tripahead of her back to the Island. She got to the ferry terminal on time, but did not make144the ferry she planned because there was too many cars for the boat. By the time she wasback home she had planned her next moves::I had to wait two hours and I just laid down in my car and went tosleep. I've never done that! Then I got home and I went to sleep, nevermind anything else. But it was clear in my mind what I wanted to do. Iwanted to first of all see my naturopath, and second, but not least, go seemy doctor and get some time off work, because I realized I was wiped andnow that my T-cell count was low I needed to get that back up again. AndI needed what little energy I had to get that back up again.Julie went to her naturopath for advice, then went to see her GP. She informedhim of her new lower blood count and that she was suffering from chronic fatigue. Hewrote a letter to the head nurse of the hospital where she worked to allow her time offuntil further notice. Concerned about the report she had received from the specialist inVancouver, she had some questions for her doctor:Trying to understand this all, I asked him, Is this the beginning ofAIDS? And he said, Yes, I'm afraid so, and he had tears in his eyes. Youhave about three years to live, or you might go very quickly. And I cried.And I thought, What about my cat? What about my house? I can't handlethe garden. Its, you know.. I'm too wiped to do anything. And I'm notgoing to have the money to hire somebody. Uhm, I'm going to have to sellthe house! And those were my first concerns.145Julie's world again imploded with her doctor's limiting view of her future. Theshift from HIV to AIDS indicated a terrifying change for Julie, including her inability tocontinue working. At another time of her life, not being able to continue working wouldhave been more traumatic for Julie. Now, however, she was relieved. Work had beenstressful and now she would have time to devote to other activities, such as taking care ofher own health.Facing her own mortality, Julie's thoughts turned to her mother who had diedyoung at 49 years. She had sometimes feared that somehow the same fate might befall heras well. It was only in the last year that she felt she understood what had happened to hermother, and realized how different their situations were. Having just liberated herselffrom this fear, ironically she found herself thrown back into the possibility that she toomight die just before her 50th birthday. In despair she turned to her friend, the person shehad first confided in about her status. Her friend was supportive and comforting Sherecommended Julie read Bernie Seigal's book, Love, Medicine and Miracles. Julie foundit very inspiring, as it reviews the stories of patients that have achieved peace andsignificant control over their health problems through spiritual, self-healing techniques.Included in the book is an open letter from a patient to her doctor that is meant to assist apatient maintain control over her health and foster a meaningful doctor-patientrelationship.The book helped Julie to see her own doctor in a new light and to see that therewere different possibilities for how they could work together in the best interests of herhealth. She went to see him armed with Siegal's book:I read to him the open letter to physicians that's in the book.. I readhim the relevant parts like, Don't tell me when to die, that's up to me, and,uh, if I seek alternative medicine, don't desert me, I may need yourmedicine mostly when I'm the sickest, and, continue to teach me your146beliefs, I may convert at sometime when I need it, and that sort of thing.And, uh, he really took it very well. And he said, I must get that book!And while I was reading something else, he wrote down the details of thebook. So, I thought I'd done well in educating him. And that, I felt, wasthe beginning of my role in education.I also asked him, if my fatigue could have been caused by anythingelse other than AIDS, before I pulled the alarm. And he said no. So, thenI decided to call a meeting at work, which is rather unusual, for arevelation of your condition.Now on long term disability from work and having to come to terms with thepossibility of a limited future, Julie felt she would like to go public with her personalexperience with HIV. She had been surprised by the show of support - flowers, cards andcalls - from her colleagues at work since she had retired. No reason had been given forher absence and she was pleased to find that people did not pry. She decided she wantedthem to know:I called a meeting at work. Even the head nurse didn't know whatwas going on. There were three people at work who knew and they wereabsolutely trustworthy. They didn't leak anything. Other colleagues knewwho they were and tried to pump them, but it didn't work. Even the headnurse tried to rake one of them over the coals about what was the matterwith Julie, but she stood up to it very well. (laugh) So, it was a very wellguarded secret. The ones who knew I was HIV positive, they were on thephone the first time I was off The first DAY I was off sick. We areconcerned. Anyway, then I had my what you might call my day in court atwork. I was really looking forward to it.147I presented it, I think, fairly well. There were 20 people there andyou could hear a pin drop in that room for a half an hour. I had first toldthem that I understood that they were apprehensive about what I might sayand that this was an unusual way of communicating, but that it was theonly, to me, appropriate way to tell them what was going on, because Ididn't want it going through the grapevine. I didn't want to put it up on theboard. It had to be face to face with as many as possible. And I told themI would give them the bad news first, which I did. I said, I have AIDS.And I said, if you get over your shock for the moment, I will give yousome background. And I did. I told them what I'd been through in the lastfive years, up until the present time. And then I ended up on a positivenote. And I didn't tell them how I got it. But I made a bit of a joke aboutit. And that was spontaneous. I said, I didn't get it through drugs orpromiscuity, you can probably tell by knowing me. And then I sort ofchuckled and said, And I didn't even get it in anybody's bed, and I'm gettingto old to do it anywhere else. (laugh) Nobody laughed but me! So, youknow, I was very free, but they weren't.Julie enjoyed the drama of her presentation. She knew she was not what mostpeople would visualize when trying to picture a person with AIDS. She hoped the newswould shock them. She had reasons for speaking out in her workplace:For me it was important, because we have had HIV patients [in thehospital]. We've AIDS patients, HIV patients and, uh, the staff labelsthem. I mean physically labels them. They put yellow stickers oneverything [to signal the need for universal precautions] And also, when148someone is being tested for HIV or is a just a male homosexual, they putyellow stickers on everything.We had one person who was HIV - only HIV positive - and theygave her a private room, which was understandable because she was atranssexual, but they also had her eat out of paper things. They haven'tmade anybody else do that and I thought that was so weird. And she wasthe last one who needed that because she was not only coping with theweirdness of being transsexual, plus having HIV, she also had, uh, cerebralpalsy. So, she was really, uh, someone who was unusual and is beingtreated differently, and here she was being treated differently again. And Iwanted to make staff aware that AIDS is not just a problem of the otherside of the desk, it's right in their midst. Here I am, you know. In otherwords, not to look at the target groups only, but maybe its the 55 year oldwidow who had a trip to Hawaii and a little fling with the wrong person.Who knows, you know? Anybody can get it. You never know. And, youknow, that's my.. that's my lesson. Anybody can get it.Julie also would like others to realize some of the financial complications andhardships that commonly occur with the onset of HIV and AIDS. Since going on long-term disability from work, Julie receives only a portion of her regular $30,000. a yearsalary. She still has a mortgage to pay and added expenses of aspects of her healthregime not covered by health care. She has a message to the health ministries that have, todate, been focusing their funding on campaigns to prevent the spread of HIV:Not just women,but anyone who is in this position with AIDS, hasAIDS or is close to having AIDS, their money goes down. I'm on longterm disability. I'll have less money and I don't know if I can keep this149house. [Another woman with HIV] went from having her own business tobeing on social assistance. This is also true for men. [You] go on UIC orwelfare, so that's a financial hardship, but on top of that is what you pay formedical things that are not covered Medicare, like the vitamins, thenaturopath, the alternative treatments. And it really adds up. Somemonths I pay over $300. that is non-refundable. And that's a big concern.If [government] is going to distribute money, I think they should distributeit to the people who need it most, rather than for publicity or awareness. Alot of money has been spent on education and awareness, but allot ofmoney needs to be spent on people who are actually having the problems.Julie feels she is a good spokesperson for AIDS, just because she is what shedefines as "an unlikely suspect". Speaking out about her experiences helps her to copewith her recent diagnosis of AIDS. She has a new purpose. She says that even thoughshe suffered a brief depression, she knew she would come through it. She said she cameout of it feeling "very positive and very challenged". She refers to it as "the beginning ofmy emergence". Not only did Julie give up all efforts to hide her AIDS status, she madeherself available to speak out publicly about it. In this way, this very private person foundshe could retain a measure of anonymity through public speaking, and relieve herself ofthe stress of dealing directly with the feelings of others towards her as they worked outtheir responses. From a safe distance she can gain the sense of support and approval sheneeds from her audience:I did not, at that point, care who knew that I had AIDS. Actually,that same day somebody said to me, after I had said what I was going tosay at work, she said, Would you like an interview? Would you like to bein [Focus On Women, a local paper]? And I said, Sure! And she gave the150editor a call and arranged it. And that was fine. I was looking forward tothat, too.In a way it takes the burden off me to tell people. Its another wayof telling people, you know? Like, I can't tell everybody individually andthen have to take care of their feelings and their reactions. (laugh) And thisway I can reach a whole bunch of people. Plus, I can reach people whodon't know me, but do need to know that AIDS is right here and that it is areality. And it can hit women, and it can hit anybody. It's really my feelingthat I have to get that message across and I'm a good one to do it.Since she was first diagnosed HIV positive, Julie says she has thought about dying.At that time it was with "trepidation", but she has since come to think of death withoutfear, even playfully:When I was first HIV positive, I thought, Well, I guess that means Icould die sooner than most. So, I started reading more about dying. And Ifind wonderful books about dying. You know, most books you read aboutdying are really very beautiful. And this one was about a 20-some year oldwho had melanoma and her parents had written a book about what hadhappened and the progression. And the girl hadn't been accepting of herillness or death, but she came around to it just in time (laugh) so to speak..And it was very beautiful. And I said, Wow, this is fantastic! I thoughtabout what I want for a service and what I want to do with my body. AndI've had fun with it.Julie's fantasies about her death and burial are uniquely hers, reflecting herconcerns and interests:151I would like my body to be unstuffed and organic (laugh). Andburied, preferably, without a casket, and preferably in a spot where theworms will be able to transport the goodies to somebody's organic gardennearby. Most people freak out when they think of worms on your body.I've listened to the [Handel's] Messiah many times and I've participated in itand there's this passage "and though worms destroy his body" and, uh,well, that's the natural thing to do really. And I would like to be in theearth with the worms and anybody else who can use me, you know? Iwant to be in the earth. I want to be buried. And give off fumes anddestroy the ozone. (laugh)) I want to be environmentally sound. Itsprobably going to be hard to find a place that won't stuff you up withpoisons and that, uh, that, uh, has an organic garden nearby that the wormscan migrate to. (laugh) And I haven't researched that. Its sort of a fancy.I'll have to leave it to [the executor of her estate] when the time comes. Ormaybe I'll look into it myself.And then the memorial service. If I have time, like, its a littlepremature and I haven't been inspired yet, but what I would like to do ismake a tape for the memorial service that's kind of funny. Like, Hi!Nobody regrets not being here as much as I do. (laugh) But, however,who knows, maybe I'm here after all. And, uh, you know, be sort of, befairly light and yet very, uhm, very inspiring at the same time. I want to beinspiring in teaching about this.Julie is soon approaching a decade of living with HIV. In two years she willqualify to be described as a long-term survivor. Her life has been transformed in manyways as a result of her illness. She has gone from being a very private person to one152actively seeking a public role. Julie has come to a rationalization about her experiencesthat is positive and allows her a meaningful future:We all have to deal with, um, whatever comes up. For me, part ofthis is the finality of not having children, which is very sad. And, uh, thatmight of happened even without having AIDS or being HIV positive. Youknow, I might have had to face death. What I thought at one point is, youknow, some people would think it was very unfair or be very angry. I wentin to get a baby and I came out with AIDS. Basically, that's whathappened. There must be a reason for that. You know, other than theobvious ones. There's a cosmic reason for it. I thought, Well, having achild and raising a child is a great challenge, but I needed a biggerchallenge. And that felt right. That felt nourishing.153CHAPTER THREEPERSONAL AND SOCIAL IDENTITIES:MANAGING OR BEING MANAGED?Illness is a transformative experience, altering the borderlines of the self from whatthey were before, and limiting and impairing one's sense of wholeness (Kaufman 1988:345). In the cases of the women described here, every aspect of their lives has beenaltered by their diagnosis of being HIV positive. The unpredictability of AIDS and itsunique manifestations in each person adds an additional dimension of uncertainty andchange to lives already seriously disrupted. The women have no clear expectation of howtheir illness will affect their lives in the future. They have many fears. Illness shapes theirexperience even when they are asymptomatic, as any change in the self is scrutinized as apotential indication of the onset of their disease. Being HIV positive means movingbeyond the norms of their previous experience. The women appear to live in the sameworld as they always have and yet their perceptions are radically changed. To them it is adifferent world with different values. It is not easy to share this, even with sympatheticfamily and supporters. Being HIV positive is an isolating and alienating experience.Over time the women have learned to make this experience livable by carefullymanaging their personal and social identities. They pass as normal in certain situations andwith certain people, and for the other times carefully choose who they tell about their HIVstatus. Pretending to be what you are not is a strain, yet all the women seem to value thetimes that they try to put aside their illness for a while. On the other hand, to feelcomfortable with who they are now and their HIVness is, for all of them, an important,maturing necessity. It is also an ongoing process.Being able to come to terms with the new qualities of alienation and vulnerabilityin their lives is not a possibility for everyone. The women featured here have, each in their154own way, been able to take advantage of various aspects of their transformativeexperience through illness. If illness has set them outside of the norms they are familiarwith, they have found it has also provided them with opportunities to forge new prioritiesand values for themselves. As a result of what medicine cannot offer them in the way ofdirection or cure, and through their own actions to control their health and well being, theborderlines of medical care and intervention are also challenged and transformed.Personal Identities: ManagingBeing diagnosed HIV positive was not an expectation that any of the five womenin this study had imagined for themselves. All of them, even Lynne and Heather whorequested HIV tests from their doctors, blundered into their diagnoses with nopreparation. At the time none of the women were suffering symptoms that they mightassociate with AIDS, yet suddenly they found themselves defined as terminally ill. All ofthem remember the moment of their diagnosis vividly as the instance marking their livesbefore and after AIDS entered their lives. Accompanying their change in identity from selfto HIV self came a host of imposed labels - sick, contaminated, contagious, diseased,victim - that they needed somehow to address. What followed for each woman was aprivate journey of self-informing to discover what new self identity each would chose:what to accept and what to reject of the labels imposed upon them by their illness and theperceptions around them. They found themselves in a dilemma. One could notsimultaneously define herself as a sufferer or victim, and a worker, mother, daughter,caregiver, parent or lover. Finding room for a variety of selves, trying to restrain theillness-self from taking over all the roles one has to play, was a survival tactic all thewomen had little choice but to learn.155Sources of InformationThe difference between hearing about HIV as a disease and being diagnosed with itwas a rude awakening. Much of the information about AIDS that the women knew fromtelevision, newspapers, magazines and friends that had made the subject previouslyinteresting and conversational was suddenly, after their own diagnosis, revealed as useless,if not threatening. Despite the variety of ways that the women learned of their diagnosis,they all experienced a similar sense of disbelief. Diagnosed in 1985, Julie had not realizedit was possible for a woman to have HIV. She had heard of AIDS only associated withmen. Even three and four years later, at the time of the other women's diagnoses, littlewas available in print and the media to alter the stereotype of AIDS being essentially amale disease.AIDS was known to be associated with death, however. Certainly in Heather andJulie's cases, their physicians believed themselves to be delivering an almost immediatedeath sentence to their patients. That their doctors had so little to offer by way ofinformation or encouragement had a devastating initial effect upon the women. Used toconsulting their physicians for comfort and cure, this response was deeply disturbing andleft them with few options of where to turn for help.Most of the women were recommended to make contact with an AIDS supportorganization. In the 1980's this usually meant contacting an organization that specializedin services catering to the gay male community most hard hit by the epidemic. AIDSorganizations tend to provide a blueprint for survival for those living with HIV and AIDS.Prior to the advent of support groups specializing in their needs, women did not alwaysfind relevant role models or information and assistance adequate to their needs.The women are all different in the amount of contact they prefer to have withAIDS organizations in their areas. Most take part in a support group for women andparticipate in organized speaking engagements, but some, for example Allison, Lynne andHeather, are more actively involved in organizational efforts. Participation has benefits156and costs. Involvement with AIDS organizations ensures a reliable source for informationand contact with others who are HIV positive. As the category "women" is so inclusive,however, creating a women's group often means bringing people together who may haveonly their sex and disease in common. The efforts of all organizations to promote a focuson health and well-being is in part contradicted by the politically motivated choice todefine people in terms of their disease as Persons With AIDS, or PWA's. While this is auseful strategy for minority association, public profile, and political lobbying, it feeds astereotype of lives dominated by illness that many seek to overcome.Coping StrategiesHIV happened to these women in the midst of busy, everyday lives revolvingaround jobs, relationships, appointments and responsibilities. The moment after diagnosisthey all had to carry on. Running an errand, returning to the office, getting through thefirst few hours and days was automatic. Personal support, by way of a spouse, relative, ora friend was crucial at this time, but almost immediately all felt a need for moreinformation. Contact with an AIDS organization and counsellor was recommended bymost doctors. What the women were looking for were new possibilities. More or lessfamiliar with the negative, they needed to know if it was possible to carry on, and how.Diagnosis left the women feeling helpless, vulnerable, and ignorant.Meeting other HIV positive women was an event all women recall as having asignificant impact upon their sense of self and possibilities. Just knowing another womanin a similar situation was out there helped to reduce feelings of isolation and estrangement,contributing to their ability to cope. Making contact with another woman meant makingconnections in other ways, too. In some cases, it meant tapping into an information andexperience network, a private club with strict codes of confidentiality and almostunconditional emotional support. Informal women and HIV networks rely heavily on thetelephone to bring women with HIV and AIDS together from different parts of the157province. In Heather's case, talking on the telephone was not enough. In order to meetwith other HIV positive women she had to make it happen herself, with the assistance ofthe local AIDS organization group in her area.All women said that finding out more about HIV and AIDS made them feel morein control. Self empowerment is the key to coping - fighting back in some way. Takingan active role in their own health care was one means of overcoming feelings ofhelplessness. Lynne found planning meals, taking moderate exercise and communicatingwith an network of informed friends more than just a comforting routine. To Julie,working out her vitamin regimen rewarded her with a sense of striking back at her illness.Later on, community activism provided another level of empowerment for thewomen. All are currently involved in local AIDS organizations focusing on women'sissues. Public speaking, telling others their story, is a continually reaffirming exercise. Asthere is usually no set format to the presentations, the possibilities for the individual tocater to her emotions and needs of the moment allows for a cathartic and therapeuticsituation for the speaker.Coping strategies also include avoiding certain situations or persons that excitenegative feelings or stress. Since there is so much that cannot be controlled in life,developing the ability to take control over what aspects one can seems to have asignificant positive effect on health and outlook.Managing Contact With Medicine and Health Care ProfessionalsAs an aspect of managing their health care, many of the women control theircontact with doctors and health care professionals. The medical profession's focus onillness and disease offers little to women who are asymptomatic. Many find thatdiscussions of HIV and AIDS from a medical perspective overwhelms their efforts to livelife to its fullest. The difference between living with AIDS and dying with AIDS is asignificant, rather than a subtle, difference. What makes maintaining optimism and a158forward-looking perspective so difficult for the women is that they are fully socialized intothe beliefs and understandings of the medical system they are attempting to avoid.Physicians do not force their social and medical views upon us. We consult them becausewe already share their views. Even in deserting them for alternative health or self-helpperspectives we carry our shared culture alongside our rejection. Taking a different view,however, alters the normal relationship between doctors, medicine and the patient. Tostep out of the traditionally subservient patient or sick role is to take on a more powerfulrole.None of the women entirely reject what traditional medicine has to offer. Bypicking and choosing what health treatments they wish to participate in, the women havebecome, more consciously, consumers of what the health care system has to offer. Inaddition, their more active role allows them a greater potential for critically assessing whattreatments are available and what their risks and benefits might be. They see medicine asvalid for only part of their condition and seek other resources in themselves and thecommunity to learn to live with their illness.Managing Intimate RelationshipsAlong with their diagnosis women may have to struggle with personal feelings ofdiscomfort and self-loathing related to the notion of their having contracted a contagiousdisease. These feelings can intensify during times of the month that women have to dealwith mestrual blood. Few, if any, sources are available that offer discussion of theconnection between menstrual blood and HIV. Adding to the common culturalsecretiveness about menstrual matters, lack of information and lack of opportunity toexpress their feelings and concerns can encourage in women negative emotional responsesto their own natural processes.Aside from altering aspects of self-image, being HIV positive imposes manychanges on the nature of intimate relations between partners. Many women report losing159interest in sexual feelings and entering a period of celibacy. In part this can result fromundecided feelings, as in Julie's case, about how to deal with informing a potential partner.For those already in an intimate relationship with a partner, the difficulties experienced canbe compounded by the fear of rejection or the disruption of the overall relationship. Thesefears seem particularly prevalent when only one partner is HIV positive. In the case whereboth partners are discovered to be infected, there may be a tendency to prolong arelationship that might otherwise have ended due to the fears of both partners that theirchances of participating in another relationship are limited by their illness.Initiating new relationships poses dilemmas of when and how to inform a potentialpartner of one's HIV status. For Lynne, the situation was eased by her boyfriend havingpreviously learned of her being HIV-positive. Heather found it difficult to bring herself totell her boyfriend once they had started sexual relations. Knowing when and how toreveal one's HIV status is a changeable and highly personal issue, fraught with influencesof power inequalities and sexual politics between partners.There is little professional information available of how women's lack ofempowerment affects the heterosexual transmission of HIV. Prostitutes are frequentlyblamed for the infection of women whose spouses or partners are the clients of the sexindustry (Anastos and Marte 1989: 11). Responsibility is shifted away from the man whoengages in risk taking behaviors. The prevailing ethic that considers it a man's perogativeto have multiple sexual encounters contributes significantly to the transmission of HIV,particularly in the case of women who are not aware they are at risk (Anastos and Mute1989: 11).Education is only part of prevention. Even when a woman recognizes she is at riskshe may not be able to protect herself adequately. Current public health strategies relyheavily on the use of condoms. The key problem with a condom is that it requires thewoman to assert dominance in the sexual act. Almost everywhere such dominance is notthe traditional mode and imposes unfamiliar behavior on both members of the couple160(Stein 1990: 460). Ironically, women's control over their own fertility since the advent ofthe birth control pill, diaphragm and IUD has enabled men to relinquish activeresponsibility in birth control. Learning an interactive technique is a new experience formany couples. With the condom women are again responsible, however, on complianceby their male partners for their own protection. The condom has never been a particularlyeffective means of birth control (Zena 1990: 460). So far, research to provide reliablemeans that women could use to prevent HIV transmission has received little if anypriority.Sexuality is a key aspect of human identity. Problems resulting from the effects ofHIV, medications, fears and diminishing self esteem through illness are particularly painfulto the women. There is little opportunity or forum for them to discuss their needs andconcerns centering on issues of sexuality. Once when Lynne tried to consult a nurse in thehospital about the use of rubber gloves during sex, she was told she was "disgusting". ForLynne and the others, rubber gloves are something they have had to learn to becomfortable with in order to safeguard their own and their partner's health. Safe sex posesmany problems as whole patterns usually highly ritualized behavior must be altered toaccommodate new equipment and practices.Managing Social RelationshipsIn managing their social relationships the women have several goals in mind: theneed to maintain their identity as a "whole" rather than an "ill" person; to protect theirpersonal privacy; to safeguard themselves from rejection and negative responses; and toshelter those close to them from stigma. All the women were initially very selective aboutwho they revealed their HIV status to. While most responses to their revelations weresupportive, any negative response brought to bear a whole burden of societal stereotypesthat the individual would then have to work through. The re-education the womenthemselves had undergone as a result of their own diagnosis does not protect them from161the knowledge of their own previously held stereotypes and prejudices which may, withthe wrong encouragement, come back to haunt them.Informing others is not an easy task even if the person is anticipated to respond ina positive fashion. All the women commented on the time and energy it took to pass onthe bad news. Revealing one's status almost always seemed to include providing sufficientinformation to allow the person being told to properly contextualize the knowledge.Similar to their own experiences of first being informed, the women also find that tellingothers means dealing with people suffering a crisis of emotion who are not alwaysreceptive at that time to educational and explanatory information. It can be a timeconsuming and burdensome task.The women's need to let others know about what has happened to them meansopening their lives to the possibility of violations of their personal privacy. Heather foundthis to be the case when people she did not even know in her neighborhood began toapproach her and question her about her status. Allison is one who is very protective ofher family and is not willing to risk stigma being imposed upon her child before he has achance to grow up and come to terms with his mother's situation. While all the womenhave participated in public speaking on the subject of their HIVness, not all of them are soopen in revealing their status to even family members. Lynne, for example, decided notto inform her in-laws of her HIV status.Being asymptomatic encourages the disguise of one's status, and perhaps, as inHeather's case, a certain level of denial. Certainly, while the women are healthy or whilethey have no visible illness, they have better control over who does and does not knowtheir HIV status. Being able to live out a dual self-identity fulfills the special needs ofwomen living with HIV and AIDS: the need for empathy for their being ill and their needto escape it.162Financial Impact of IllnessAIDS can be considered a disease of color and that color is green. On personallevel, being sick is expensive even in Canada where health care covers many costs. Lossof employment earnings, loss of pension years, the need for child care, the need for homecare, travel to medical centers for treatments, and medical costs not covered by healthinsurance, such as AZT24 and alternative therapies, are some of the cost related issuesconfronting those living with HIV and AIDS.The impact of HIV and AIDS on one's livelihood can be significant. Even thoughHeather was not ill at the time and was able to work, she could not get insurance for herday-care because she was HIV positive. She lost her job outright as a result of herdiagnosis. Keeping up with medical appointments and drug treatments even before beingill was enough to interrupt the regular employment schedule for two of the other women.Lynne found it difficult to justify to her employer the amount of time off she required fordoctor's appointments. She had planned to keep her diagnosis private, but found she hadto inform her superiors in order to gain the leave she needed for participation in drug trialsat the hospital. Both Lynne and Julie eventually went on long term disability when minorsymptoms and fatigue interfered with the proper fulfillment of their duties.The economic significance of AIDS, extends beyond the personal. Despite thestereotype that AIDS affects only the marginalized and disadvantaged, those aged 20 to40 and most central to the work force are most vulnerable to the disease worldwide(Treicher :52). That AIDS is the leading cause of death in women of this age group insome of the major cities of the Americas, Western Europe and Sub-Sahara Africa(Hankins 1990: 6), not only represents a direct impact upon labor, but also upon child24 When AZT was released by federal authorities in 1986, British Columbia was the onlyprovince in Canada to refuse to provide AZT free to AIDS patients. Until 1991 it wasavailable free of charge only to those eligible for welfare (Rayside & Lindquist 1992: 70).163rearing and care giving, two labor and cost intensive duties culturally defined as theresponsibilities of women.Social Identities: Being ManagedIt is tempting to think of the women as individuals struggling on a new frontier ofexperience, except that women living with HIV and AIDS have been around for too longnow to be thought of as a new phenomenon. In addition, the difficulties they confront areas much a part of their social context as they are of their personal lives. The extent towhich they have learned to manage living with HIV and AIDS is shaped by the largerrealm of social and cultural influences surrounding them. Women's experiences of illnessare tempered by familiar and persistent conditions of sexism and marginalizationencountered by women at all levels of our society. The situation for women iscomplicated further by the fear, denial, and homophobia in response to AIDS that deflectsattention and understanding from a much needed focus on their needs and concerns.Despite the fact that over a decade has past since AIDS was first recognized as anillness, that women are at risk has received little acknowledgment or attention. Thereasons contributing to this are as complex and intractable as the disease itself and occuron a global scale: women are more often poorer than men; may have less access tomedical treatment; may be preoccupied attending to the care of others; and are more likelyto be in less powerful positions to negotiate relationships, in particular sexualrelationships. AIDS tends to highlight weaknesses in the social order. For women, theoverarching issue is sexism.Gender Bias in AIDS Definition and ResearchThere is significant gender bias in our scientific and social understanding of AIDS.The US. Centers for Disease Control (CDC) determines the combination of opportunisticinfections that justify an official definition of AIDS. The definition is based upon164symptoms appearing in mainly white, homosexual and bisexual men (McKenzie 1989: 5).Further research into HIV and AIDS has been based overwhelmingly upon studiesconducted upon men (Corea 1992: 76; Denenberg 1990: 32; Anastos & Marte 1989: 6;Ribble 1989: 35). Although this is not unusual in medical and scientific research, itoverlooks the obvious: that women are also affected, and that women's bodies aredifferent from men's. The differences affect both the consequences of HIV and the impactof medication (Scharf 1992: 189)Women frequently are disqualified from participation in clinical drug trials.Ironically, the reasons given for their exclusion, are exactly the reasons why more researchis needed. Exclusion is based upon the differences in physiology and hormones betweenmen and women. The impediment to exploring such differences are said to be that itwould require testing larger samples and increase the cost of studies (WARN 1989: 19).Many drug trials will consider as possible candidates only post-menopausal women orwomen who have been sterilized, due to possible risk to the fetus should a pregnancyoccur (WARN 1989: 19; Scharf 1992: 189). The assumptions are that all fertile-agewomen are at risk of pregnancy and cannot be relied upon to use birth control consistentlyand successfully for long periods of time (Santee 1988: 12). Although concern for apotential fetus inhibits the participation of women, no consideration seems to be given toany harmful affect participation in a drug trial may cause to male reproductive capabilitiesor the risk of male participants producing defective offspring.Lack of Diagnosis and MisdiagnosisAs a result of the exclusion of most women from studies, the clinical model ofAIDS refers to many symptoms that are common in men, but unusual in women, andomits the kinds of opportunistic infections that women do experience. In 1987 the male-biased definition of AIDS was expanded to include, among other changes, conditionsappearing specifically in HIV infected children. Ironically, although pediatric AIDS is a165reflection of AIDS in women, conditions exclusive to women are still ignored (Corea1992: 76). Lack of studies, lack of knowledge, and lack of awareness all haveconsequences.Not enough studies have been undertaken for confirmation, but evidence suggeststhat women have shorter survival times between diagnosis and death than men. Womenwith AIDS in Canada are twice as likely to have opportunistic infections than their malecounterparts (Hankins 1990: 8). With few epidemiological studies on women, it is notsurprising that doctors have difficulties recognizing HIV in their female patients (Hankins1990: 7). With little understanding available of how HIV effects women's bodies, it is notsurprising that women are often unable to recognize the onset of the disease in themselves(Taylor 1990: 10).Around the world women are commonly misdiagnosed or late diagnosed with HIV(Fischl et al. 1987; Hankins 1990: 7). They often find out their HIV status as a secondaryresult of another medical intervention, such as the diagnosis of a partner, a blooddonation, an illness, an operation or childbirth. In the case of childbirth, a woman may notlearn of her own status until she is tested as a result of her infant's diagnosis (Spurgeon1988:49-52; Hankins 1990: 448).Although it is not commonly appreciated, there are patterns of AIDS-relatedillnesses more prevalent in women than in men, as well as conditions specific to women'sreproductive systems (Scharf 1992: 191). Men and women have approximately the samerate of PCP. However, men are nine times more likely to get Kaposi Sarcoma (KS) thanwomen25. Only-2.1 percent of female cases report this malignancy (Hankins 1990: 8).Early, non-specific signs of HIV in women include fatigue, fever, weight loss, diarrhea,skin rashes and vaginal infections (Hankins 1990: 8; Positive Women's Project (Victoria).25 Kaposi Sarcoma is a rare form of cancer that first appears as purplish spots on the feetand slowly spreads through the skin to the lymph nodes and abdominal organs. It occursmost often in men (Glanze 1985:407).1661992)). Although the natural history of HIV infection has not been examined sufficiently,reports document that recurrent or persistent yeast infection of the vulva and vagina(vulvovaginal candidiasis), yeast infection of the mouth and esophagus (esophagealcandidiasis), abnormal pap smears, abnormal cell growth in the tissues of the cervix(cervical dysplasia) associated with genital warts (human papilloma virus, IIPV), persistentor recurrent genital herpes infections, menstrual abnormalities and pelvic infections (pelvicinflammatory disease, PID), are typical clinical complaints suffered by HIV positivewomen (Hankins 1990: 8; Pinsky et al. 1992: 163-164). Adding to the difficulty ofdiagnosis, all these symptoms are not uncommon among sexually active women inchildbearing years, except that in the case of HIV the ailments are particularly virulent andmay only respond temporarily to treatment.Lynne's repeated ear and throat infections over a period of eight months provides arepresentative example of HIV illness and its misdiagnosis by her doctor. Although Lynnehad been told she was immune suppressed, her doctor did not seem to make anyconnection between the repeated infections. It was not until Lynne, in frustration,requested an HIV test herself that she was diagnosed.Misdiagnosis often occurs as a result of lack of familiarity and knowledge ofwomen's symptoms. Opportunistic infections that occur similarly in both men and women,however, are often misdiagnosed in women merely because there is little expectation thatwomen get HIV and AIDS in the first place. PCP is the most common opportunisticinfection in AIDS patients overall and is a major cause of AIDS deaths. Study resultsindicate that women with PCP who seek medical help are more likely to be treated forminor respiratory ailments and let go, while the same symptoms in male patients arerecognized and treated as PCP (Anastos & Mane 1989: 7).Heather's experience in hospital supports these findings. She was not diagnosedwith PCP until two days after her admission to hospital when she revealed to the doctorsher HIV status. Her PCP had not been diagnosed even though she did not respond to the167treatments given her, and even though there were other (male) patients in the same wardsuffering from the same symptoms who were being treated for PCP.Public Images: Women as VectorsThe media has confused the issue of the need for awareness among women byfocusing on sensational headlines featuring the infection of female prostitutes (Taylor1990: 10). The focus on prostitutes as vectors of disease has a long social history. Thereare numerous precedents for women prostitutes being scapegoated. Perhaps the bestknown instances occurred during World War I in America and Britain as a result of thehigh prevalence of venereal disease among troops (Brandt 1987). Venereal disease wasthen medically defined as being transmitted by women, and police and judiciaryimplemented measures to force women into medical quarantine (Scambler et al 1990:264). Sexual bias is apparent in any metaphor that defines women as reservoirs of disease.The implication is that men are somehow innocent transmitters of sexual diseases, movinginfection from one woman (a prostitute) to another (female sexual partner) (Murphy 1988:72), rather than a potential source of infection themselves. Since the mid-1980's womenprostitutes have been defined as causal agents, rather than as markers or victims of thespread of HIV and AIDS in the heterosexual population (Scambler et al 1990: 264).Some studies indicate that the prevalence of HIV in prostitutes so far tends to parallel thecumulative incidence of AIDS in other women (WARN 1989: 16). It is the high risk useof IV drugs, among a small segment of the total population, that is related to HIV amongprostitutes (WARN 1989: 16; Scambler et al 1990: 264; Campbell 1990: 411). REVantibody prevalence is three to four times higher among prostitutes who acknowledge IVdrug use than among those who do not (Campbell 1990: 411).The effect of deeply ingrained societal sexism is such, however, that until recentlyone could gain epidemiological information concerning women and AIDS mainly fromperinatal studies and, to a lesser extent, from studies of prostitutes (Anastos & Mane1681989: 10). This has contributed to a skewed perception of the role of women in the AIDSepidemic so that they are regarded by the public and studied by the medical profession asvectors of transmission of the virus to their children and male sexual partners. This biaspersists even though evidence indicates that the risk of transmission of HIV is more likelyfrom men to women than it is from women to men (WARN: 6). And statistics show thatthere is only a 25 to 50% chance of transmission of HIV from mother to child thoughchildbirth (Campbell 1990: 410). There is little discussion of women's concerns as peoplewith HIV and AIDS who are often themselves victims of transmission from the men intheir lives. While she received the virus fom an anonymous source, the callousness ofLaura's doctor to the discovery of her being HIV positive provides a case in point.Overlooking her feelings entirely, the doctor only expressed concern for the surgeons whohad operated on her.Speaking OutAll of the participants in this study could be described a private people. Yet, as aresult of their experiences with AIDS, stereotypes and stigma they have been motivated tospeak out. Time is precious to them, but they are committed to educating others aboutthe risks of HIV and AIDS and the inequality, injustices and sexism suffered by womenwho find their lives suddenly transformed by this chronic, stigmatizing illness.For the participants, the study has provided an opportunity of several differentkinds. Speaking out is not always an option for women, wishing to maintain control overwho knows of their HIV status. This study offered the women a protected, anonymousopportunity to tell their stories. In addition to helping to document models for women'sexperiences living with illness, the women gained a sense of personal power andachievement from their participation. Through the study they have been able to affirm tothemselves and others what they feel is significant about their lives with HIV and AIDS.169Chapter FourWhere Are Allison, Lynne, Laura, Heather and Julie Now?It has been three years since I first interviewed Allison, Lynne, Laura, Heather, andJulie. Of course, their stories do not end in these pages, but continue on. Many changeshave taken place for each of them. I felt it only appropriate to give them an opportunity toupdate their situations. I requested that each of them send me a letter commenting onwhat changes have occurred in their lives with regard to their personal status and health,plus any additional comments they wished to add to what I have already included.In response, what the women have to say is full of promise and pain. Thecoexisting conflict between these two states is best represented in the way that all of themmake use of the expression "being positive". Allison, Lynne, Laura, Heather, and Juliethroughout the years of our collaboration have all used "being positive" at times to refer totheir HIVness and at other times to their commitment to carrying on meaningfully withtheir lives. Both illness and cure, being positive is not merely a contradiction, but anaccomplished way of living the women have struggled to achieve for themselves.AllisonWith energy and perseverance, Allison manages many roles in her current routine;that of busy parent of an active toddler, partner in a committed relationship, dedicatedworker for the rights of HIV-positive women, counselor to newly diagnosed HIV-positivewomen, and an HIV-positive self. She is often tired. Although she is not as well,physically, as she was at the time of our first interview, she is just as adamant as she wasthen about living her life to its fullest.170Allison and David have sold their apartment and purchased a large, stately homewith a rental suite in the basement and a large yard. David has been successful in a newjob that provides them with more financial potential and stability. Allison has now retiredcompletely from her professional career in favor of being a full-time mom and part-timeAIDS worker.Undoubtedly, the most significant change in Allison's life has been the birth of herson, Alexander. She is convinced that her pregnancy and labor did not adversely affecther health status, and with the confirmation of her baby's healthy immune system, she andDavid were spared any possibility that their worse nightmare - their child being infected -would come true. Raising Alexander is demanding, however, and Allison feels theinterference of her illness in her best efforts to provide for her family:I have a healthy happy two and a half year old boy who brings morejoy and benefit to my life than any chemical medicine could. I love beingwith him and know that it was a good decision for us to have him. I wouldnot necessarily counsel another woman in my position to do the same[however], knowing what I do now about the demands of parenthood aswell as the debilitations of HIV. I have more familiarity with [that] than Idid three years ago.While Allison's health status remains fairly stable, she is now persistently botheredby HIV-related symptoms. Well read and well-informed in the latest treatments andmedications available, she has become skeptical of the efficacy of new medications thatappear on the market at fairly regular intervals for treating AIDS. In the last year she hasdecided to take even more control in decisions effecting her health:171I stopped taking AZT last year and have really felt no difference,except freer psychologically. I have become more in charge of my ownhealth care, including exploring alternative or natural options. I am notprepared to let anyone else take responsibility for my health care decisions.This is sometimes extremely hard, as it would be nice to have someone say"Don't worry, just do this and everything will be all right". But it is not areality. AIDS is a very fashion-driven illness. The experimental drug-of-fashion this year will be out of style by next year. I am the only one withenough stake in my life to make the right decisions.As well as having to come to terms with her own health situation, Allison has hadto observe the debilitating effects of HIV on close friends around her. Confronting thedeath of others has left her little room to avoid facing the thought of her own mortality:In the past year I have faced the deaths and severe illness of someof my Illy-infected friends. Along with this has come a facing of many ofmy own fears. It has been a difficult time for me, and has brought home tome the fragility of my own life. I feel as though I've had to unlearn andrelearn many assumptions I've carried for years. In addition, I've developeda persistent rash on my neck, chest and ears, which has fed my fears aroundHIV, pain, and death.The onset of her first visible symptoms of HIV-related illness has had an impact onher relationship with David. The complexity of what a non-infected partner experienceswhen faced with a loved one's affliction, unfortunately tends to increase just at the timewhen his or her support seems most greatly needed. The intense evolution of values,emotions, and priorities that Allison feels as she deals daily with a heightening sense of her172own mortality is, not surprisingly, sometimes at odds with her spouse's feelings. Thepressures they experience, originating from a common grief, can pull them apart:I am struggling in my relationship with David. Our sex life is non-existent since I developed this rash. He is even reluctant to touch meunless I am clothed. With all the emotions and losses I've had to deal withrecently, I have moved into a place where I don't take anything forgranted, and I try and live my life day to day. He doesn't understand thisand feels I should be "more responsible" financially. He is focused on hisfinancial responsibility (we have a significant debt), while I am focused onexperiencing life. This difference in perspective means that he sees mydesire to go out for dinner once in a while as frivolous. I see it as nurturingour relationship and feel a great sense of loss. I no longer take mytomorrows for granted.Commenting upon her earlier contributions to this study, Allison wonders at thechanges she has experienced since then:Re-reading what I said three years ago, I am amazed at howoptimistic I was then. Although I am still optimistic, I suppose my view oflife is tinged with some of the sad realities I have learned in the interveningtime. I've spent a great deal of time in the last few months trying tounderstand my spiritual self, needs, and framework. It has been bothdifficult and satisfying.Allison finds great satisfaction in offering her own hard won knowledge andexperience to others newly diagnosed HIV-positive. She gains a sense of achievement in173knowing she is personally making a difference. Her work at the Positive Women'sNetwork (PWN) is an investment in her own, and other's, future:I have been contributing time (both paid and volunteer) to thePositive Women's Network. I find it satisfying to be able to talk to newlydiagnosed women and help them get accurate information, as well as be avoice of hope for them in a sea of negative advice. We have great plans.There are more and more HIV-positive women coming out of thewoodwork. Many have been infected by a man they sleptwith/dated/loved. "I didn't think it could happen to me", is still the mostcommon thing I hear them say. I am sorry for every one of them that Iencounter, but I am glad we are coming together more. These women areall my heroes. Our struggles have not been told yet. One day I willattempt this.LynneLynne and her fiancé, Ron, were married in August of 1990. Over the last fewyears, the love and optimism that brought the two of them together has been erodedsomewhat by the strain of living with HIV. Lynne is currently unemployed and living ondisability. She retired because of fatigue and general HIV symptoms. Although she hasnot yet suffered an AIDS defining opportunistic infection, Lynne's health is poor:My T-4 cell count is 180 on average and my energy level is low. Ineed to nap most days. I am currently taking AZT/DDC combinationtherapy, as well as a thorough vitamin regimen. I take Septren as PCP174prophylactic, Acyclovir for herpes, Losec for stomach acidity, and over thecounter (OTC) medications, e.g. Tylenol as needed.Increasingly physical manifestations of HIV illness place a mounting burden ofworry and fear on Lynne's relationship with her spouse:My marital sex life has fallen prey to MV dis - ease. As Ron hasbecome more aware of AIDS and my possible mortality he has becomeafraid. The fear of my death or of him catching the virus has taken its tollby shutting him down sexually. In the past two and a half years we havebecome less and less sexual, until now the agreement is we learn to livewithout. This change has been devastating for both of us. In a day to daysense we carry on much as before. We're affectionate, hug and kiss, andshare most of our lives, but I don't think the lack of intimacy will do usgood in the long run. I worry about both our futures - issues around ourmarriage's strength, and individual self-esteem are of great concern.Lynne is convinced that the problems she and her husband are facing are notuniquely theirs. She feels the need for a support group to share feelings and experienceswith, such as the changing responses within a relationship confronting HIV. She isworking to help organize a group to deal directly with personal issues.Lynne works two days a week at the Positive Women's Network (PWN) and alsodoes guest speaking on AIDS through the AIDS Vancouver Speaker's Bureau. Lynnefinds her volunteer involvement and public speaking to be "empowering". Yet, the energyshe expends in positive efforts for women and AIDS on a community level seems equallymatched by insecurities and doubts she entertains on a personal level:175It is tempting to make my life smaller - drop peripheral friendshipsand involvements, let go of casual hobbies etc. The desire to make myselfephemeral in my own life has been present and, I think, damaging to me inthe past year. By ephemeral I mean that somewhere deep inside I'vedecided that if I live my life leaving no permanent markers, those who areleft when I die will have less to miss, and therefore less to mourn. Thisdesire also comes from societal pressure to see myself as disabled, unableto contribute to society, of less value, "dying" and, therefore, in somesense, already gone and not to be included.Death, Lynne tells me, is by now a familiar subject and no longer a topic shewishes, or as a matter of fact can even try, to avoid:I have lost my immediate fear of death. I've lost so many friendsnow (thirty in six years), that I've had to really think about what deathmeans to me. I've come to a fairly consistent state of calm acceptance, anddeveloped a belief system around what will happen after I die. It's beencomforting.Comfort comes from strange places. Mostly, it appears, from within. Lynnedepicts HIV as an intensely personal journey, yet one that is constantly influenced bylarger society's cultural values and judgments. It is often a lonely experience:I face stereotypes in the media that tell me I have no right to a sexlife, [to] bear children, and [that I] should be grateful for whatever supportI get from others. It's hard to live a full, active life even though I live inVancouver which is a fairly developed city in terms of philosophy and176resources. I have a great deal of support from family, co-workers, andfriends, yet I still feel I journey with AIDS alone. I think this is becauseAIDS touches the deepest, most personal areas of my soul, body, andmind. They are reaches that are occasionally shared with others, yet I livethem every day. Somehow, this account feels incomplete, perhaps becausethe story is ongoing and- for me - has not ended yet.LauraSince the time of our first meeting, Laura has developed a passion for educatingothers about HIV and AIDS. To her busy social life that includes frequent trips abroadwith her husband, Laura has added an impressive schedule of public speaking. The firsttime she spoke before a group was in the spring of 1990. It was in an elementary schoolto a class of Grade six students. She spoke to them as a grandmother living with AIDS:They were so interested. Lots of questions. I had been warnedthey would fidget and not ask questions. I handed out paper for them towrite questions on. They were not needed. I now knew there was apurpose for my having this virus!Following this speaking debut, Laura went on to give numerous newspaper, radio,and television interviews. At first she went under the guise of a pseudonym, later shebegan to use her real first name and, now, she proudly uses her real, full name. One of hergrandsons, with permission from his parents, appeared with her on a CBC French TVnews program. The show was so successful the interview was shown on the English newsboth locally and nationally. Laura was featured on the front page of the Vancouver Sun177newspaper and in a poster to promote awareness on World AIDS Day, December 1, 1990.That year the World Health Organization sponsored event focused on the topic of womenand AIDS. She has spoken to AIDS Vancouver training groups, church groups, tocollege students and health care workers. Currently, Laura does telephone consultingwith women usually near her own age who prefer not to participate in group meetings.Laura's decision to go public with her experiences living with HIV carried not onlyherself, but her family as well, into the limelight. Initially, Laura's husband, Robert, wasnervous about what kind of response she and the family might receive. There was,however, no negative backlash, just Laura says, "support and lots of interest". Roberttook early retirement in October 1990. Despite Laura's fluctuating health, the couplecontinue to travel extensively.The letter Laura writes updating her activities over the last two years is unique inthe way it documents a seemingly incongruous combination of travel destinations andHIV-related illnesses. Laura seems to counteract every health setback she suffers with ajourney for joy:March '91, we flew to Orlando, Florida. I thought my legs wouldburst. My T-cells were below 200 now. We were meeting our son Markand his family in Disneyworld. They were coming from Colorado. We hada great time, but I was not well. I saw my doctor on return. He made anappointment with a specialist about my legs. The specialist said it lookedlike I'd had [varicose veins] for at least 10 years. He performed daysurgery, cutting the arteries on top of my inner thighs to relieve thepressure. My T-cell count had dropped to 140 and I was taken off AZT.I was put on DDI as I left on an Alaska cruise. All went well. Ibegan to improve. I kept on with my trips and speaking engagements. BySeptember '91, my T-cells were 400! My doctor thought I should try AZT178again with my DDI. I started feeling ill almost immediately. The third dayI couldn't get out of bed. I stopped the AZT, but now DDI wouldn't helpme anymore. My T-cells were falling again. February '92 my T-cells were140.March '92 we left on a Grand Circle Orient Cruise. I was justbeginning to feel better. We had booked in January '91. I had been sosick, I just had to have something to look forward to. Our 40th [wedding]anniversary was February 9, 1991. The cruise is what I wanted for apresent. My husband obliged. It was wonderful, worth every penny! Wereturned May '92. On return my 1-cells were up to 160.Laura writes that her son, Paul, has moved back to Vancouver from the UnitedStates. He works as a self-employed systems analyst, has much energy, and travels a greatdeal. So far, he has not been ill and his 1-4 cell count is around 700. She also tells of thebirth in February of 1991 of her sixth grandchild. The child, a little girl, is named LauraClare after her two great, great grandmothers.Laura suffers a range of HIV-related symptoms: an ulcerated esophagus andmouth, oral thrush, weight loss, xerostomia (lack of saliva in the mouth), fungal infections,and peripheral neuropathy (numbness) in her legs. As of December 1992, however, her 1-cells were 210. She says she "has never felt so well over a winter for a long time". Lauracontinues to plan for her future.HeatherAlthough poor health and chronic fatigue plague her, Heather entertains a tasteand vigor for life that is both cheerful and refreshing. Four months ago her T-4 cell countwas measured at 70. She has suffered two significant bouts of pneumonia and pleurisy179since then. Struggling now to recover from her latest illness, Heather did not feel she hadthe time or energy to send me a written update. Instead, we spoke together over thetelephone and agreed that I would paraphrase what she had to say. She also gave mepermission to use excerpts from a letter she had written to me in 1990 in response to herreceiving a copy of our interview tape. In the letter she described to me her satisfactionwith being able to listen to herself tell her own story:Listening to the tapes was really interesting. Besides not havingmuch opportunity to hear my own voice, hearing the whole thing frombeginning to end was really something. I shared the tape with a couple offriends. Their reaction was, Geez, it took us a whole year to get all of thatout of you!Shortly after she wrote me this letter, Heather moved from her rental home into agovernment subsidized apartment in a different part of the city. The move was not an easyone. It represented increments of loss in several ways to her: loss of employment, loss ofindependence, loss of space; loss of the way things were before:It was hard to let go of my house and move into an apartment.Sort of yet another process of letting go and accepting the changes thathave taken place in my life as a result of having AIDS. I suppose there willbe a few more [changes] even yet.There have been many changes, however, Heather and her, now eight year old,daughter are doing well. Her daughter has literally grown up with her mother being ill.Heather maintains an open dialogue with her, allowing her to express her anger andfrustration at her limitations and the times that she is just too sick to be active with her.180Heather is particularly grateful to her Sterling network. The eight-member, women'sgroup meets once a week and are more like family than friends in the way that they step into help out whenever necessary. Their unconditional assistance and support, Heatherbelieves, has allowed her to keep her daughter at home and in her care without socialservice intervention.Despite regular flu symptoms, frequent yeast infections and her recent bouts ofpneumonia, Heather describes her health as "good". She has not, aside from the PCPthree years ago, suffered any major opportunistic infections associated with AIDS. Shecredits her relatively stable health to her choice of a naturopath as her primary health carephysician and her decision not to take AZT and related drugs. Part of the success of herhealth regime is undoubtedly the strength of commitment she is willing to demonstrate insupport of her own choices.Social services provides payment for a wide variety of special health care needs forits recipients, but does not provide funding for any natural health care regimes. Heathertook Social Services to court on this issue three years ago and, along with three otherpeople in Canada, won the right to receive payment for alternative health treatment. Shefound the process of working through her claim with an advocate and making herpresentation to the tribunal energizing and empowering. Heather consults her naturopathtwice a week, but does not refuse more conventional treatment or drugs in critical healthsituations.The relationship Heather was struggling with at the time of our first interviewended shortly after. It was a painful time for Heather. She rallied, however, andeventually struck up a friendship with a man she met in the neighborhood. He moved in tolive with her, more as a house mate than a partner, for a year and a half. Their close, andsometimes intimate relationship, ended for similar reasons, Heather believes, her previousrelationship had. The cause being, as Lynne so eloquently described in her story, "dis-ease" with disease: fear of contagion, the discomfort of living with someone who is181believed to be terminally ill. Ironically, Heather finds that inhibiting feelings occur later,rather than sooner, in a relationship. The change from full intimacy to increasing physicaldistance is devastating as it happens. Heather's fears of being alone have not been livedout, however. She recently met someone else, also a single parent, through her daughter'sschool. While he is eager to formalize their relationship through marriage and have herand her daughter move in with him, experience makes her cautious of how long thesefeeling might last. She knows it is very difficult to watch someone suffer. She wants toprotect what control and stability she can maintain in her own and her daughter's lives.Heather tells me she feels that her family relations are growing closer. She is incontact with both her parents and her brothers. Her mother came over from the mainlandduring Heather's last hospital admission to stay at the apartment with her daughter. Thiswas the first time her mother had left her own home to come and help her out. Heathersays she regularly sees one of her brothers, also from the mainland, whom she hasappointed legal guardian of her daughter if she should die.The most frustrating thing with having AIDS, Heather says, is not being able towork. She tried to take a job cleaning an office for two hours a day, but found she couldnot keep up with the physical demands it required. She has kept herself busy, however,making her own opportunities. She and another friend have been sewing hats and sellingthem locally for some time now. The intermittent labor this entails better suits hercapabilities. A year and a half ago, she tells me, she quit her volunteer work at AIDSVancouver Island ( She still attends, however, the weekly meetings of the support groupfor women with HIV and AIDS.).. After five or six of her friends died within a shortperiod of time, she says she felt the need to get away from the focus on AIDS and channelwhat energy she had in a different direction. Feeling the need to express herself creatively,she took up acrylic painting on canvas. Soon she found herself with enough paintings fora one woman show, which she held in a privately owned space in the city. The show wasa great success. She sold all the paintings she had not already given to family members, as182well as over 100 greeting cards printed with photos of her work. Since her latest illness,Heather has not done much painting. She is confident, however, that her condition isimproving and she hopes to do more soon.Heather finds that achieving a balance between AIDS related interests and non-AIDS related interests is the key to successful well-being. She basically has two networksof friends, those with AIDS related interest other HIV positive people and people she hasmet through the AIDS Vancouver office, and other friends whose interests in AIDS areincidental. She is rightly proud of her efforts in sewing and painting, and gains much joyin their pursuit. Heather does not relish being ill, but she is enjoying life.JulieMuch has happened to Julie in the time between our first interview and now. In alawsuit that is the first of its kind in Canada, she sued the doctor who performed theartificial insemination that resulted in her contracting HIV. She sued for expected loss offuture income and reduced life expectancy. The doctor, a prominent Vancouverobstetrician and gynecologist, denied liability, claiming that medical science was not awareat the time she was infected that the virus could be transmitted in such a manner (Hall1991a). After two weeks of trial proceedings, a civil jury made up of seven women andone man, decided on November 20, 1991 that the doctor was negligent (Hall 1991d). AnAustralian immunologist testified that artificial insemination 'clinics were shut down in thatcountry in 1984 after it was discovered that four women and their children were infected.The doctor published an article alerting the medical world to the problem of transmittingHIV through infected sperm in the British journal The Lancet in 1985. The Australiandoctor testified that although the mode of transmission of HIV was confusing in the earlydays of AIDS, public health officials should have been more active in advising properscreening tests be done of blood and semen donors (Hall 1991c) Julie was awarded a total183of $883,800 in damages: $460,00 for pain and suffering, loss of enjoyment of life andreduced life expectancy, $3,800 for out-of-pocket expenses before trial, $65,000 for lossof income, $280,000 for future loss of income, and $75,000 for the cost of future care(Hall .1991d). The doctor has since filed an appeal on both the ruling and the damages.The results are still pending. Almost $200,000. of the award has been advanced to Julie.The remainder of the award is held in trust, pending the outcome of the appeal. Julie usedthe money she received to pay off her legal fees and to put a down payment on a newhouse (Canadian Press 1991).Although hopeful about its eventual outcome, Julie found the trial exhausting andwas glad to be back to her own routine. She has received many requests for interviews asa result of the publicity surrounding the trial. She has taken advantage of the opportunitythese requests have provided for her to talk about her own experiences and to promoteawareness of HIV and AIDS.Julie writes me that shortly after our first interview in 1990, she experienced a"transformation" in her inner self. This was precipitated by three events that, together,gained great significance for her:I found Love inside me. Surprise! Before this I always vaguelywondered what love was and if I had any, and how could you tell? I wasn'tlooking and I found it right inside. Very big. I had intuitively refusedAZT, feeling it would be destructive to my body. Later that year I stoppedusing a visualization tape that was a bit too hostile or destructive to thevirus. I was becoming a true pacifist. Later, again, I cut myself and had tobe stitched up before I went to a [choir] rehearsal because I could not gothere with all this "dangerous" blood around. When I came home thatnight I had a spontaneous chat with my blood, reassuring it that I like itjust fine, even if others were afraid of it.184Not until some months later when these three things came up in apresentation, did it hit me: I LOVE THE VIRUS - IT IS ME. There is nodistinction of 'you 'versus 'me'. We are all ME, and I love ME.Therefore I love the virus. Weird. Powerful.Julie comments that people may think she is crazy, but that she feels free to havenon-conforming thoughts about her illness. She continues to avoid doctors and thestandard medical treatment for HIV, such as AZT, in favor of alternative therapies. Herefforts to keep a positive focus, she explains, can be put off by a visit to the doctor:You go to the doctor feeling fine. He finds a little abnormalitysomewhere and has you bringing in all kinds of samples, [taking] X-rays,other tests, and seeing a specialist. He is ruling out the things, but thethings he is ruling out are HIS focus. And your schedule becomes focusedon illness, not health. Doctors look for trouble. If they persist longenough our bodies oblige miraculously.Julie has found that her emotions have a significant impact on her health. Shemakes a conscious effort to focus on good feelings and good thoughts, despite the deathof many friends around her. Julie tells me how she and another HIV-positive womanfriend compared their experience with frequent death with what it must have been like inwartime London during the blitz:A casualness about our friends dropping dead. "John and Anndown the street got hit. Too bad. Let's go get something to eat". Irealized that we live in a different world than most people now. ManyPWA's lose not only one close friend, but a whole bunch of their friends. I185thought the people [at my] bridge club would be different if 20 of theyoungish players had died in two years and [there was] no end to it.One death has particularly effected Julie. His name was Geff. She knew him onlybriefly before he died of AIDS in July of 1991. They had much in common, a love formusic, and, as it turned out, a distant family connection. With no relatives in Canada, and6,000 miles from her homeland, Julie feels the meeting was not a coincidence. Thespiritual connection she made with Geff and his remaining family continues.Julie's health has remained stable, although her T-4 cell count varies. In 1992 itdropped from 920 to 700 and then to 500 and 480. Her last count was up again to 480.Julie writes:I must add that [a] T-4 count is only a small part of the picture andnot too much importance should be given to it. People with T-4 counts of0.0 are alive and well. Some die with fairly high counts.Julie says she is still learning and developing in how she deals with HIV. She islearning to trust in herself and in her body. She still feels she has a message to deliver toothers. The message has changed somewhat from before, however:Since the courtroom I have had more publicity. Some I feel goodabout, some neutral, but I welcome the chance to say something importantand stay away from focus on how I got it. That was just the vehicle thatbrought me and publicity together. My message now is not only: Look atme - anyone can get it, but also HOPE for PWA's, an attempt to openpeople's minds to new possibilities of thought. I try to communicate whatthe bigger message is. I believe that AIDS is not necessarily fatal. The186more people leave a window open for that possibility, the more power itwill have. The outcome depends very little on what specific treatments aperson chooses or allows, but a lot on what one's mission is in life, whatone needs to learn, one's karma.It comes full circle: AIDS is here as a manifestation in our bodiesof what we have done to the planet and we are still not seeing the light.Not quite yet, that is. But there is hope that it will happen. I do notbelieve AIDS [will be] cured in a laboratory. It will go away whenhumanity learns to take care of its common residence, the Earth, and loveand accept each other.187BibliographyAct Up/New York Women and AIDS Book Group1990 Women, AIDS and Activism. 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Culture Medicine and Psychiatry 11:107 - 121.Young, Richard1989 Report From the Frontlines: Unsung Heroines of the AIDS Epidemic. HealthPolicy Advisory Center Bulletin 19(4): 16- 18.Zuckerman, Connie and Lauren Gordon1988 Meeting the Psychosocial and Legal Needs of Women With AIDS and TheirFamilies. New York State Journal of Medicine December: 619 -620.202APPENDIX 1** REQUEST FOR VOLUNTEERS **HELLO!Would you be willing to participate in an anonymous, confidential study aboutwomen living with HIV/AIDS in British Columbia?My name is Carol Howard Donati and I am a graduate student in Anthropology atthe University of British Columbia. I am working on my Masters Thesis onWomen Living with HIV/AIDS. I would like to interview women (the session willbe tape recorded) who have HIV/AIDS about their experiences living with theillness. Information from the interviews will be used in my thesis and possibly inother published resource or educational materials. The purpose of my study is todescribe women's experiences living with HIV/AIDS in British Columbia based onwomen's OWN descriptions. This work is intended to raise awareness and concernabout issues identified by women whose lives are most directly affected.Interviews with a range of different women will reveal common areas of concernamong women living with HIV /AIDS as well as important differences in theirexperiences and needs. Such a document will be an important resource forinforming and educating others.I am interested in hearing about YOUR experiences. The interview session willlast about two hours and will take place at a time and location that is convenient toyou. Your participation will be anonymous. The only person to know youridentity will be myself. So your real name will not appear anywhere on tape or inprint, your identity will be disguised by a pseudonym. If necessary, identifyingdetails of your personal history may also be altered to ensure confidentiality.You are not required to answer any questions you do not wish to, and you are, ofcourse, free to withdraw from the interview at any time you wish to withoutprejudice.If you have any questions about the study or you would like to take part, pleasefeel free to contact me. I'm looking forward to hearing from you. Thanks.Sincerely,Carol Howard Donati203APPENDIX 2.STUDY OF WOMEN LIVING WITH HIV/AIDSVOLUNTEER CONSENT FORMI agree to be interviewed in an anonymous, confidential session by Carol Howard Donatifor the study Women Living with HIV/AIDS.Information from my interview will be used in the production of a Masters Thesis inAnthropology at the University of British Columbia and possibly for further educational orresource publications. The purpose of the study is to describe women's experiences livingwith HIV/AIDS in British Columbia based on their own stories.The interview will last about two hours. If necessary I may participate in a follow-upinterview of no more than two hours. I agree that the session will be tape recorded and, ifI wish, I will receive my own taped copy of the interview.My contribution will be completely anonymous and confidential. The only person to knowmy true identity will be the interviewer herself My real name will not appear anywhere ontape or in print (although I agree to sign this form below with my true initials). Where Iam referred to on tape or in print my true identity will be disguised by a pseudonym. I donot need to answer questions if I do not want to and I may withdraw at any time from theinterview without prejudice.The interviewer is willing to answer any questions about the project in person, in writingor by phone.I have received a copy of this form.Date^ Name^* Only first and last initials of your real name are required.You may refer to me by this name: ^I can be contacted at :204APPENDIX 3STUDY OF WOMEN LIVING WITH HIV/AIDSSAMPLE INTERVIEW QUESTIONS(Note: These are sample questions. Wording etc., may vary depending on personbeing interviewed.)Introduction: I am interested in hearing about your experiences living with HIVdisease/AIDS.1. When did HIV disease/AIDS first become a concern in your life?Where did you first hear about AIDS?How did you find out about your own status?How long have you been living with HIV disease/AIDS?2. What experiences in your life do you feel are associated with your illness?3. HIV disease/AIDS affects every person differently. Tell me about yourexperience.4. Is confidentiality an important issue for you?What sorts of things do you do to keep your status secret?5. How has living with HIV disease/AIDS affected your life?Your relationships with others?Your work?Your attitudes towards yourself?6. What sorts of treatment have you been involved with?Medical? Non-medical? How do you feel about this treatment?7. What things have you found most helpful to you in coping with the illness?8. Have you thought about dying?9. Do you know other women with HIV disease/AIDS?10. How did you make contact with them?11.^Do you participate in any organizations or support groups forpersons with HIV disease/AIDS?Are they helpful?20512.^What services and/or resources would you like to see tohelp women living with HIV disease/AIDS?Thank you very much for participating.


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