CHAPTER 6
extremely close to one another. Nkosi took care of his mother at home when she was dying. His father had been very abusive when he was growing up and had deserted his mother after infecting her. Nkosi and his older brother went to live with relatives after her death but were thrown out of the house soon afterward. He felt that while some people in the community prayed for him and sympathized with him for his sorrow, others were not so kind when he had cried and they had ridiculed him. Nkosi had become a
"born again" Christian and was living temporarily with church elders. Although he had endured much hardship in his life, he tried to remain optimistic, relying heavily on his faith. He said: "I do things that will help me tomorrow ...I don't want to waste time - ever."
Monica:
A 25 year old Zulu female, Monica got tested a few years ago for HIV after learning that her cousin was HIV-positive. Her cousin, with whom she was very close, died two years ago and since then Monica had also experienced the loss of her sister's three young children to AIDS. Monica was HIV-positive and had two children of her own whose HIV status was unknown. She was shy and had difficulty expressing herself.She had not finished high school and had never really held any jobs. She had lived with various boyfriends over the years that had supported her. She said: "I've learnt a lot, because they have shown me if you are a woman you depend on them." She knew which man had infected her and when she told him that she was infected, he ran away.
Monica's parents were deceased and she had three sisters and two brothers who were scattered in different places. Monica helped take care of her cousin in the last months before she died. This experience had made her think about who would take care of her when she got sick, and particularly who would take care of her two children. She belonged to a support group at a hospital though she admitted she did not like to talk much about her feelings.
Doris:
58 years old, Doris was a charming, compassionate, and intelligent Zulu woman.She was a retired teacher and principal, and held an Honours degree in English. She had three children: 17, 27 and 29 years of age as well as three grandchildren. She had a close knit family and she was very active in her retirement, volunteering at the church and
working on a Masters degree in Communications. She had put two of her children through university by herself. Her 48 year-old husband died 10 years and although he had been sick with various ailments, his death had come as a shock. She only discovered that he had AIDS after his death. She immediately got tested and was found to be HIV- negative. Doris and her husband had problems for several years before his death as a result of his extramarital affairs. She kept silent about the cause of her husband's death for several years - no-one knew that her husband had AIDS, including her children. Then she joined a church five years ago and met people she could confide in. Today, she said she has put everything in perspective and is at peace with the past. She explained: "I am healed. I got healed when I forgave him. I only remember good things about him." A few weeks before our first meeting Doris's 60 year old brother died of AIDS. She found out that he had AIDS just before he died. None ofDoris's nine siblings knew that he had AIDS and she did not intend on telling them because of her fears that they were ignorant about HIV/AIDS and that they would probably cause problems for his wife.
Mthoko:
33 years old, Mthoko, a Zulu male, tested positive after his brother died of AIDS just over a year ago. His brother who was an alcoholic tried to commit suicide the year before his death. His brother had a baby who died just before he did and the baby's mother died shortly after the brother - both from AIDS. He was a quiet, introspective, and sensitive man who clearly was struggling to deal with both his brother's death as well as his own diagnosis. Mthoko was grateful for the opportunity to talk about his feelings.He was one of the saddest individuals I interviewed. He was unemployed and lived with his mother and sister. He had completed matric as well as some courses toward an engineering diploma. Although some of his six siblings knew of his HIV status, he had not told his mother because he was concerned about the effect it would have on her. He suspected that two of his sisters were infected as well. He did not have a girlfriend at the present time. Mthoko did not trust many people and appeared despondent even though he tried to sound optimistic about the future. As a result of the deaths he had witnessed
,
both with his brother as well as among peers, he realized that: "to live genuinely is very important. ..."
Prudence:
Prudence, a 25 year old Zulu woman, had been with the same man for five years. She discovered she was HIV-positive in 2001 shortly after giving birth to their son. Her baby died at four months of age from AIDS. Although she had earned a diploma in business management, she had difficulty finding a job. She was presently unemployed and lived with her mother and stepfather. Her boyfriend who worked in the prisons also helped her financially. She had two younger step-siblings. Prudence was open and honest in our meetings and deeply mourned the loss of her baby. She told me:"I have lost the most important thing in my life. Now I do not fear anything. I just take life as it is." She became pregnant again with the same man and gave birth to another boy who is now 14 months old. So far, he has testedHN-negative. Prudence is close to her mother and admires her compassion and generosity. Her mother has taken in several people sick with AIDS and taken care of them, even though her family struggles to make ends meet. Prudence said that her son and her mother keep her going. She hoped to get married soon. She was determined to live her life and not "waste the years."
Azon:
At 49, Azon was an HN-positive Zulu man who had lost his wife to AIDS six months ago. They had been separated for five years but remained civil with one another.Azon's life had been one of extreme hardship. Abandoned at five years of age, he was left to fend for himself at an early age. He had worked at a store for the past 20 years and earned a decent income. He had two teenage daughters who lived with a relative. Azon had been very ill for several years. His health had deteriorated drastically recently and he said that he was ready to give up two months ago. At the time of our meeting, he said that he was feeling better and was back at work. He did not know his wife had AIDS until shortly before she died. He had not told her either about his own HIV status.
Personable and self-reliant, Azon was a loner and had difficulty talking about himself.
His colleagues at his workplace knew about his HIV status and were supportive. His greatest worry was his daughters and what would happen to them if he died. Azon was a very sick man who was desperately trying to live a normal life. Sadly, Azon died a few months after our last meeting.
Zanele: A sweet, gentle, likeable Zulu woman who looked older than her 42 years. She was desperately poor and struggled on a daily basis to feed her six children who lived with her and her mother in a small house. Her husband left her when he found out that she was HIV-positive a few years back. She had little formal education and we conducted our meetings with the assistance of a translator. I knew we had established a bond by the end of our meetings when she tried to reply in English. I was moved by this gesture. Zanele lost one sister to AIDS in 1999 and another, the youngest, last year.
Another sister died in 2000 but it was not AIDS-related, apparently. Zanele belonged to a sewing group connected with a NGO for people with HIV/AIDS and earned some money doing this but not nearly enough to live on. She relied on a government grant for two of her children and reported that most people in her community were no longer willing or able to help her. Zanele was emotionally and physically drained and trying hard to keep despair away. Itwas hard to comprehend how someone could survive in the midst of so much hardship and tragedy - especially with so little support.
Felicity: 31 years old. A pleasant, self-assured Zulu woman, Felicity was happily married to a public health nurse and worked as a volunteer at a church that provided support services for people with HIV/AIDS. After matric, she had worked for several years at various hair salons. She lost her best friend ("sister") to AIDS four months before our meeting. She was a 42 year old single mother who refused to acknowledge that she had AIDS, even as she lay dying in a hospice with Felicity by her side. No-one in her family knew that she had AIDS until they saw the death certificate. Felicity believed that her friend may have died quickly because: "she was ashamed to be at (name of the hospice) because it was a place for people who also have AIDS." Felicity was respectful of her friend's desire for secrecy and understood why she was like that considering the way society was. Though she missed her a lot, she felt that she had gotten over her grief. She said: "I understand that she won't come back to life and life has to go on."
Phumzile: A beautiful, cheerful Zulu woman, Phumzile was 19 years old. She lost her mother and stepfather to AIDS four years ago. Her younger sister who was 15 years old
was now living with a boyfriend and Phumzile was living alone. She had recently broken up with her abusive boyfriend of three years. Two years ago he discovered that he was HIV-positive and Phurnzile decided to get tested too. She tested HIV-positive and her boyfriend immediately blamed her for infecting him. She had just gotten a job as a receptionist at a hospital when we met. Phumzile had to watch both her parents die of AIDS when she was 15 and she has had to take care of herself since then, without any support from her extended family. In fact, they had been nasty to her and jealous of her strong will and how she had handled life so far. She said: " ... they know the hell I have gone through and I am still surviving...." Phumzile radiated a need to be loved and taken care of. At one point, she asked me: "I want you to be honest with me. Do you think that I still stand a chance of me one day having my own children and my own husband?"
She gravitated toward older men and acknowledged that they were like father figures and that she relied on them for financial support.
Nomusa:
Nomusa, a 30 year old Zulu woman discovered that she was HIV-positive when she was 21. This was six months after her daughter was born. The child died of AIDS two years ago when she was nine years old, after a long struggle with the illness.Nomusa focused on the positive memories of her daughter. She remembered her outgoing and charming personality and how smart she was. Whenever her daughter was in the hospital she said: "I could see that they truly loved her." Her daughter died a few months before the father. He had not been close to the child and had not helped raise her.
Nomusa's parents were deceased and she lived with one of her brother's and his wife in her parent's house. They had made life miserable for Nomusa as she struggled to care for her sick daughter over the years. Yet, she had nowhere to go. Relations improved a bit recently when Nomusa got a part-time job and had some money. She was still burning with resentment about the way they had treated her and her two children in the past. She had been seeing a man for several years and had a baby with him, a girl, who was also HIV-positive. The child, now five years old, was responding well to ARV treatment. Nomusa's world revolved around her daughter and she remained upbeat about the future.
Sizakele:
A 45 year old Zulu woman, Sizakele was highly intelligent with a strong personality that belied the many hurts she had experienced in her life. She found out that she was HIV-positive in 2001. She had suffered the loss of several close family members to AIDS including two sisters and one brother. She had three children who were HIV- negative and she was very unhappy in her marriage. Her husband, also HIV-positive, was abusive and an alcoholic. Sizakele was perhaps the most articulate, open and smartest participant that I interviewed. She was fully aware of the many unresolved issues that continued to burden her. Her main concern, like most participants, was making ends meet. She had finished matric and held clerical positions over the years.She worked odd jobs and also sold food. There was no doubt that Sizakele was a leader and that she had a lot of untapped potential to succeed in a professional career - if things had turned out differently. She said that the most "painful" loss was that of her sister-in- law to AIDS last year. They had not been particularly close in the past but when her sister-in-law discovered that she was dying, it was Sizakele who she called first, and this gesture dissolved the problems from the past. Sizakele ended up being the person who took care of her in her final days.
Tuli:
Tuli was a 42 year old Zulu female. She had never married and had no children.She was HIV-negative. She was very reserved at first and acknowledged having difficulty trusting people all her life - especially men. She admitted during our meeting that she had prepared herself by not intending to open up too much. She said: "When I came here, I knew what I was going to tell you ... things that were general." Fortunately, she ultimately relaxed and she revealed a lot of painful feelings that she had kept hidden for some time. Her somewhat stem demeanor masked a sensitive and lonely person. She had worked as a secondary school teacher for many years but was currently unemployed after transferring to be closer to her mother. Tuli lost her 25 year old sister to AIDS three years ago. She left behind a daughter who is now five years old and whose status is unknown. Tuli worried that the child may be HIV-positive. Tuli has another sister who lives with her mother while Tuli lives alone. Her sister's death had made her even more suspicious of men and she had resigned herself to being alone because she could not risk
becoming infected. She was angry with her surviving sister who "talks about boyfriends and going out and sleeping over."
Ragani:
Ragani was a smart, personable Indian woman who looked younger than her 36 years. She worked as a project administrator for a medical research company and was studying for a law degree. She was HIV-negative. She experienced three losses to AIDS within her immediate family: her brother in 1996, his wife in 1998 and their daughter in 2002. Her sister-in-law found out that she and her one year old child were infected the day before her husband died. Ragani assumed total responsibility for the infected child and her three siblings (all girls) after their mother died. To a large extent, she had been forced to put her own life on hold, but she had come to terms with this over time. The other girls were found to be HIV-negative. Ragani did not have any children of her own.She had been particularly close to the child who was infected, and the little girl died in her arms at home. Ragani vividly recalled the horrific final days of her brother, sister-in- law and her niece and said: "I would never want anyone to go through something like this ... dying is one thing, but the suffering was bad for all three." Ragani lived with her mother and the girls as well as with an alcoholic brother. She had been dating a man for several years now and was just beginning to move on with life, trying to maintain a healthy balance between the burden that had been placed on her and her desire for a life of her own.
Bathokho:
Aged 28, Bathokho had been diagnosed with HIV two years previously, after being ill for some time. She was tested shortly after her older sister and her four month old baby succumbed to AIDS. Bathokho was frail and aware of just how sick she was. She was the sickest of all the people that I interviewed. She could not think too far into the future and said: " I have been sick for two years ... I don't know if in two years I will still be alive." Bathokho was very weak and spoke in a whisper during our meetings, but she insisted that we not stop as she wanted to share her story. She had a 10 year old daughter whose father had died several years before, but not of AIDS. She lived with her mother, younger sister, her daughter and three other family members.Bathokho's daughter did not know that her mother had AIDS. Bathokho lost her job last
year and the fact that she was unemployed as well as so sick, made her very depressed.
She was bitter that all the sacrifice and hard work she had put into getting a diploma in human resources had been a waste of time, now being too illtoo work and not being able to find a job anyway. Bathokho was prepared for the worst yet trying to hang on for her daughter's sake. She summed up her philosophy about life as follows: "You must expect everything... and hope."
Sibusiso:
At 25, Sibusiso was a friendly though immature Zulu man. He had lost his mother to AIDS in 1998 and his mother's sister in 2002. Most recently, he had lost his brother to AIDS. Sibusiso decided to get tested after learning about his brother's HIV status and he was not surprised to learn that he was H1V-positive, having played the field for many years. He had five children, all with different women. He said he was"celebrating" the day before our first meeting, as it was exactly one year ago that he tested positive. His brother who was 29 years old left behind a girlfriend who was H1V- positive and two children whose HIV status was unknown. Sibusiso had never held a full-time job since completing matric in 1999. He was not supporting any of his children as he was unemployed. He relied on a stipend he received for volunteering at an advocacy organization for people with H1V/A1DS. He lived with eight other family members. His grief over the loss of his brother and several other family members was offset by his attempt to maintain a carefree attitude toward life. He prided himself on being open about his H1V status - and the service this was providing. His naivete was demonstrated by statements such as: "I once told my mother that one day I'll be a star.
One day, I'll be a legend of H1V/A1DS by disclosing." His current girlfriend, who seemed to share similar personality traits, was also HIV-positive. Sibusiso admitted that he sometimes "forgot" to use condoms.