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A long path page three

Part of the problem that HIV people experience, is that you are told all the reasons how you can get or spread HIV, however there are few publications that I know of, that tells you NOW YOU ARE HIV, HERE IS WHAT YOU DO OR WHAT TO EXPECT.

No one informed me about shingles (warning signs). I still don‚t know what to expect next. The next five days were unpleasant but not that painful, as the tablets numbed the pain and there was no itch. However, the pain is now unbearable.

A week later, a friend phoned me and I told her about my shingles debacle. She freaked me out by telling me I could get shingles again and hepatitis. She had really knocked me for a six. I immediately got on the phone to the doctor who in his usually calm manner said ‰don‚t be alarmed, come and see me today‰. At 4.30pm I was there. Made to wait 50 mins to see him. He told me my shingles were healing well (this I already knew). He then got a tube of ointment and rubbed it on my tummy and back and then put plastic plasters over the ointment. He then said that would „be R35.00 and R15.00 for the cream‰. I was astounded, as I had enough tubes of cream in my flat and as a child I had known I could not have any plasters over my wounds, as they just do not heal. I paid the R50.00. As I was leaving he shouted to his assistant to give me tablets which cost R60.00. I asked him what they were for. He responded that they were for my stomach and food. I had not complained about my stomach or food. I have never taken those tablets and I need to return them because I did not pay for them.


I slept with the plasters on and went to work the next day. I was totally uncomfortable and in a lot of pain. At one stage I asked Gloria to check my back. But knowing Gloria, she did not want to alarm me, she said it was fine even though the plasters were saturated with green gunge. By 3.30pm I was feeling dizzy. At 4.25pm I asked a colleague to give me a lift home because I was too weak. I laid on my bed and took two pain tablets. While lying down, a neighbour came into my flat and realised immediately something was wrong with me. She checked my back and told me my wounds had turned green. I flew out of my bed, got into a hot salt bath and removed the plastic plasters quicker than I knew I could. She then cleaned the wounds. My flesh was now showing.


I phoned the doctor, I was furious. He said he had put the plasters on to protect my clothes. I certainly did not need my clothes protected, I needed my health protected. I realised he did not charge for consultation but only for medication. I was angry. When I arrived at his rooms my shingles were healing well, he even said so himself, so I therefore found it unnecessary for plasters to be put on as I was going from his hospital to my flat to bath and clean the shingles.

At 7.30pm, that evening, I decided to trek back to Addington. I went there with a towel around me, as I do not possess any dresses. What I looked like was not important, how I felt was and I felt much worse than I looked. I was finally attended to at 12h30am. The doctor told me my shingles had turned septic. I had to have an injection and dressings. I left Addington at 1h30am. The next week was to be a week of pain and I mean real pain. I would not wish shingles on my worst enemy. My shingles are now drying up but the pain, for the most part, is unbearable.

On the 11 January 2002, I attended a farewell party. I decided to stand outside on the veranda. About 10 mins later a female joined me. She asked me if the company was only sponsoring my vitamins. I was shocked with this enquiry. Firstly, I had never personally told this individual my status. I had remembered on the 30 November 2001 at the Christmas party, me being upset about waiting for my results. However, at that stage I did not even know I was HIV. My greatest concern at that stage was the throat cancer as I had just overcome cancer and we have a history of cancer in my family. I had noticed since that day she continually asked me how I was and how I was coping. The day I did receive my results she did come to my office to find out about my results and I lied to her and told her my blood had clotted as Gloria was in the office and I had not disclosed to her.


She proceeded to ask me if I had ever been married to which I responded by saying no. She then asked me if I ever had children, again I responded by saying no. You know how most women are not satisfied until they have rubbed all the salt in the wound and she demonstrated this by „then how do you become HIV positive‰. ..‰ I could not understand the correlation between having a husband/ kids and someone being HIV-positive. In the midst of my anger, I was able to see the ignorance. I straightaway realised the need for a heavy education drive. Not only was this conversation insensitive, it stank of ignorance. If this was the old Delarise, there probably would have been a verbal attack on this individual. However, I saw light at the end of the tunnel as I saw the opportunity this ridiculous conversation created rather than the limitation of it. There is a great deal of HIV ignorant people out there.


Confidentiality is normally a problem in corporates because some employees who have access to confidential information feel this places them in a position of superiority and in her case she wanted me to know she knew my status. Cattish women, sister rivalry. One wonders why employees do not disclose.


The most frequently insensitive question, people ask is, how did you become HIV positive? Do people in this day and age still not know how a person becomes HIV? If they are told the source of the HIV, what value would that add to their life or to the infected person‚s life? The source of one‚s HIV, is valueless to anyone, as there is nothing they can do with the information. No sorry I‚m wrong that can be a topic of conversation and lead to much gossip.


Who gave it to you? Do some people think HIV is a gift which comes beautifully wrapped and we just greedily put our hands out and accept the gift? Many people, who actually attempt to find out, get more miserable when they find out. I personally believe this adds unnecessary stress to infected people‚s lives. I think some people want to know the source because they want HIV + people to confront their past or really their past s.xual history. I also believe naming someone is discriminating against someone in a certain way. People will disclose when they are ready to do so. There should be no pressure on an HIV positive person to disclose we are all different and do things at our own pace therefore your time does not necessarily mean my time.


It was pouring with rain on Thursday, 24 January 2002, and I got sopping wet. I bathed and got into my bed. I forgot to dry my hair. At about 5pm my legs started getting very hot. I just assumed that it was because they were under the duvet. A half an hour later my whole body was boiling hot and I had an extremely high temperature. Certain places on my tummy and back, where the shingles were, were contracting. This was uncomfortable. Not only was there pain, there also was discomfort. At this stage the HIV debacle was now irritating me. I wanted to die. I hate this life!

On Friday, I woke up with sores on the sides of my mouth, my throat ached and my gums were swollen. I was petrified, as a lady, a few days earlier, had told me how her helper had shingles, then her gums were swollen, her teeth fell out and then she died and all this happened in a space of 1 month. Imagine the scenario. I could picture my teeth falling out and stared death in the face.


Saturday morning, I was up early to go and find the support group at McCord‚s Hospital but again my effort was fruitless. I decided to go and get the vitamin requirements I had seen in a publication called „Positive Living „. I went to a pharmacy and bought Selenium, Zinc, Magnesium and Vitamin C tablets. My mom had come for the weekend. So I had raw garlic (6 cloves and all the green vegetables possible) shoved down my throat. My mother „Can you see the garlic really works‰. By Monday morning my sores on the side of my mouth and my throat were better. However my gums were still swollen. I now live on 4-8 cloves of raw garlic per day. I also v.ginally insert a clove of garlic twice a month just so it gets into my blood quicker. I never realised the importance of it previously.


On Saturday, 9 February 2002, my perseverance paid off and I finally attended the McCord‚s Hospital Support Group. It comprises of all race groups, single and married people. This is the kind of support group I needed, as the misconception that HIV/AIDS is only a Black/ethnic disease is so wrong and this group proves that.


My Dad phoned me to find out how I was and if I had received my results. I told him I would post him something, this document, as I could not tell him over the telephone. My brother, sister-in-law and father came to see me on Saturday, 23 February 2002. I contacted my sister-in-law on Monday to find out how they were handling it. She admitted they had not expected me to look the way I did and because they were afraid of what condition I might be in, saw it fit to tell my niece to avoid her asking all sorts of questions. I think they thought they would really see a sick, dying person. Anyway my niece spilt the beans „Mummy said we must not ask you questions and if you look sick we must not say anything‰. When she saw her mothers face and the tears streaming down my cheeks she said, „Oh, oh, I‚ve caused trouble‰. Most people still have a perception that HIV people are supposed to be thin, sick or frail and you see the total confusion when they actually see you in the flesh. (Why is she not thin, if she is HIV)? I think I have awoken people close to me who never took an interest in AIDS. It can happen to anyone, (Any colour, race, creed, religion, etc.) ask me. What a reality.


On Friday, 1 March 2002, I was invited to conduct a presentation at the Marianridge Catholic Church. I did not plan a speech, as I was more concerned about my court case on 6 March 2002. I asked Wendy to come with me. I got there and did not expect so many people (adults/youth). I remember saying to my friend that this was the largest group of people I had to address and I probably would cry the whole way through and I definitely needed tissues. I definitely felt my talk had been informative but as I stood there I saw the pain of the people as well as the need for more information. I did not cry as expected but my friend and a lady sitting next to her cried throughout. Afterwards, my friend and I sat outside the church and she told me how proud she was of me speaking out and how she believed I would be famous from this disease and she would be walking behind me saying, „that‚s my friend‰. Money and fame will not give me inner peace. Understanding and knowing who I am and what my purpose in life is, will. I love my friend as she has such faith in me, sometimes more than I have in myself. I do things unconditionally and therefore do not fully understand the impact my words/actions have on people.


On Saturday, 2 March 2002, I was invited to a Counselling Training session at the Central Methodist Church to give my perspective on counselling. I think this was good as it gave potential counsellors a glimpse first hand of what they could be confronted with. I also saw the need, to activate a support group. People are hungry for support and information. I understand that many people have great intentions but not everyone is cut out to be a counselor.

As a result of my Friday night‚s talk a lady phoned me disclosing her husband‚s status to me. She explained her pain of not being able to disclose to others and the change in their lifestyle. They had not disclosed his status to their children. His family knew his status and treated him like an egg and ill-treated her and really to a great extent blamed her for his status. She told me that she did not have any s.xual relationship with her husband as she felt condoms were unsafe. His family attacked her for that as they believed it was a wife‚s duty to sleep with her husband and it must have been the reason why he had affairs and to some extent she needs to blame herself for her husband‚s status. Why is there always a need to apportion blame, where is the responsibility of the infected person in the equation. This was quiet an uncomfortable situation for me as I could just imagine what this lady was going through and also realised I am so blessed in my situation whereby I can talk to most people about my status. I think a discordant couple‚s relationship must provide many nightmares. Constant questioning: Why am I infected and why is she/he not when we have been having unprotected s.x for many years.

I still do not fully understand how two people, who had unprotected s.x with each other for years has resulted in one being infected and the other not. I know I‚ve been told about people‚s varying immunity but still don‚t understand it. Life is not always fair, but what is.


I faxed my story to Dr Zweli Mkhize as I refuse to allow anyone else to be treated at Addington the way I‚ve been. On Wednesday, at 3.15pm on 6 March, Professor Green Thompson phoned me and told me he was investigating the matter. He had handed over my matter to the Superintendent of Addington, Dr Hurst. She contacted me at 4.25pm. A meeting was scheduled with her for 9am on Wednesday, 13 March 2002.


At 12.15pm, on Tuesday, 5 March 2002, I was told by a lawyer that I had to represent myself at my court case. This was unprofessional, as this particular attorney had known about my case for 3 weeks. I was devastated, as I knew I was not in a psychological state to represent myself. I phoned my dear friend Doctor Padayachee, who by now is my best friend. She told me her duty was to give me my results verbally. She was already in my file, on the computer, and all it would take was to press the print button and I could fetch the printout from her. You must realise that up until today, I had still not seen my results on paper. An argument ensued which was not pleasant as I felt I had to let Dr Padayachee know how I felt about the manner in which she had treated me previously. She banged the phone down. If there is too much heat in the kitchen one must get out.


Thursday, 7 March I went with Pat and Eleanor and Nobuhle from Portnet to a meeting with the Matron at Addington to lay a complaint against Dr Padayachee. A further meeting is to be scheduled where all the role players of Addington need to be present. This is scheduled for 22 March 2002. However, this has not materialised as Addington feel they have made amendments to their procedures/processes as a result of my complaint. Dr Padayachee does not want a face-to-face meeting. I bet she would not.

I received my printed HIV results on 7 March 2002 (3 months later). I reacted indifferently; to my surprise there were no tears.


On the 2 April I started a permanent position as a result of my HIV status, which is ironic as, as soon as you find out, you are positive you think you will never get a job. The job affords me the opportunity to study so in May I go back to complete my studies. At this point I do not know what the future holds for me. From the bottom of my heart I know my appointment is tokenism. I definitely add another face and race to HIV. My position will not stimulate me at all but at this point I am unsure who employs HIV positive people and a half a loaf is better than none.

On the 5 April 2002, I went to see a surgeon at Addington who was to conduct a biopsy on me. She had insisted that she examine me prior to doing the biopsy under local anesthetic, as this procedure was not initiated by herself but by another physician. Luckily she was assertive enough to stick to her beliefs, as after examining me she felt the nodes were too deep and should she operate, she probably would cut my main arteries/veins in the process. She felt the physician should rather monitor my nodes to see if they did not increase in size. I was not looking forward to this episode so I am glad it is on hold. I also attended an open day for the staff at Addington and was impressed with the presentation. A youngish doctor was at one of tables with me and I was amazed how little he knew about the medication. My concern, was if I for any reason landed at his room for treatment what would his response be. This is a frightening thought. However, I am sure that he learnt a great deal by the time he left. People wonder how I know so much I don‚t think they realise I only have one life, my only life and I now have to take great care of myself and I go out and research and look for anything that improves my life.

I have no wish, at this stage, to go for a CD4 count as I personally believe, that I am not ready for that information. I cannot put my mind and body through the stress of what my count is each month. The stress alone will affect the count and I will be a nervous wreck. It would be like waiting for examination results every quarter.


On the 7 April I stood up and testified at the evening service. I told everyone I was HIVšpositive. I am sure no-one concentrated on anything thereafter. The reason for me doing so was, if I could not share my illness with my fellow brethren then I was in the wrong church or they were in the wrong church and then someone should leave. However, I was well received.


On 8 April I received a phone call to say my flat was on fire. I went home to find an ash factory. Through all the devastation I saw an opportunity. Everything that had irritated me about my flat was destroyed. The fire was like a cleansing process in that I finally put to rest, things that were painful for me. Many people felt I was having so much „bad luck‰ and I definitely would head for a nervous breakdown after the fire. I did not see the fire as „bad luck‰ as, what occurred subsequent to the fire was so positive.


On the 18 April I received a phone call to tell me that the painters were running a total mock in my flat. I got home to find all the red meat was stolen from my freezer, my jewellery gone, kettle and iron that was donated to me was gone, my cd's and many other items were gone. The fire was the disaster and now the theft (double disaster). I went to police station to charge them and would not leave until they were imprisoned. The thieves are in Westville Prison which does not bring anything back and the Contractor refuses to take responsibility for the theft. So really double jeopardy. My flat is still not sorted out as I have now asked the contractor to leave, as I just don‚t know what next will happen.

On 29 April 2002, a colleague of mine contacted me to tell me he had a newspaper article about my dear doctor. A journalist had done an investigation as to the cleanliness, toxicity of the medication that was being dispensed and the doctor‚s qualifications.


On the 2 May I received a response from Professor Green-Thompson regarding my disappointing treatment at Addington. The response was: „á Dr Hurst has met with all the personnel involved in your case and the importance of counselling before and after HIV testing has been highlighted. A further investigation is currently underway in all clinics regarding the protocols for HIV testing so as to ensure that other patients are not exposed to a similar unpleasant experience such as yours. Dr Padayachee has acknowledged that it was wrong of her to have given you your results telephonically and offers her apologies á I would like to take this opportunity to firstly apologise most sincerely for the anguish and inconvenience that you have suffered and secondly to compliment you on your remarkable attitude towards your affliction. May God and your friends continue to be an inspiration to you.‰ The confusion for me is should I leave it at this or should I pursue it. For the moment leave it.


On Friday, 10 May, I gave a talk at Sherwood Primary School. I was amazed at the level of knowledge of teachers/educators/facilitators about HIV/AIDS. But the greatest pleasure was sharing my experience and knowing I was getting through. The talk lasted about two hours. This talk made me realise what my mission in life should be. I have to go out to schools and educate the educators. They need to know how to handle HIV/AIDS students as well as the impact on their lives. There seems to be so much talk about how HIV/AIDS is affecting the teaching profession that I would be greatly saddened if I did not go out and make a meaningful contribution to this sector. I have a degree in education, which I have not really used, I need to use it now. I hope to put this proposal to my employers. That I go to different schools twice a month (from 1pm-3pm- which is really just two hours twice a month) to do presentations. I hope to conduct an awareness campaign at their Fun Day on the 1 June 2002 and am really hoping for a positive outcome. A teacher asked whether a person could get HIV from the toilet. ‚HIV negative‰ people are more a threat to me, than I am to them. If someone coughs or sneezes near me, I stress, because I don‚t want to catch anything.


Straight after the talk I went to see my friend in hospital. She was there because she had sugar diabetes. When I got there she was babbling on about something which I could not understand. I told her I did not understand what she was on about and she put up three fingers. I did not know there was a sign for HIV. I again told her I did not understand, she then whispered she was HIV positive. This was a shock as she was the person who had invited me to do my first HIV talk, who had cried all the way through that talk. I knew I had to be strong for her. I had to appeal to her mind, the part I always feel is the strongest. By Monday she was actually walking without the walker and had showered on her own. The weekend had really been a test for me. I had asked God to use me fully in the HIV/AIDS field and I was tested with my best friend. Sometimes we ask for things and we are not ready for them. This was really up close and personal. I do talks but I usually never see the person again. This is a person I would see regularly and I was afforded the opportunity to talk my walk. But I believe we will form a partnership and really do amazing work in the HIV/AIDS field. She keeps kissing me and holding my hand and telling me how much she loves me and how she is so proud of me. What she does not realise is, how proud I am of everything she is and does. She is a woman who at times sacrifices her family for the church and community. If you asked me whom I admire the most, it would have to be her and Mother Theresa. I have learnt so much from her, mostly about love and forgiveness. I remember her words „he murdered me,á‰. This frightened me because it sounded like he purposefully infected her. She told me how her ex-boyfriend had died two years prior of AIDS. What confused me was if I discovered any ex-boyfriend of mine had died of AIDS I would having been running for a test. She said my disclosure frightened her and she could not bring herself to get tested.


On Monday, at 03h23 am on the 20 May 2002, my phone rang and as I walked to answer the phone I knew my friend had died. She had died on Sunday night at 11pm. Monday was really difficult for me. She was the first person close to me that had died. I now had first hand experience of a HIV/AIDS death. The opportunistic diseases she had, were diabetes, lungs, pressure and TB. How could anyone experience such a mixed masala of illnesses? However, in my opinion her fear of the very church and community which she diligently served, contributed to her quick demise. Her greatest fear was „How would I walk into church again and how would I face the community.‰ I had tried to convince her that I would be there for her, we could face them together as I believed that I had prepared them by giving them my first talk. I told her how I had testified at my church. Her response was „áyou did not..‰ Her other fear was her mother finding out.‰ This would just kill ma.‰ She also told me that she did not understand how and why we became friends but she was certain we would be partners until death. At this point I am unsure whether her family knew her status. The funeral is really going to be difficult for me.

I got a tad sick the week after her death. For the first time in my life I had diarrhoea. On Thursday as I walked to work I messed myself. The sight of chocolate running down your legs can be both a humiliating and humbling experience. I then had to turn around and go home and bath and then go back to work, as I felt committed to attending the HIV/AIDS meeting. I had lost a dear friend and when I think back to how I thought we could have made a difference in the HIV/AIDS world and how well we could have worked together and shared in each other‚s pain and joy, I was saddened.


I was asked to be the MC at her funeral. This was difficult as I was emotionally/physically drained. I could not tell anyone what she died of as I did not know who knew and who did not. But I did let them know that she was the first person who allowed me to publicly disclose my HIV status to her church.


Doreen Wilson has asked me to conduct a presentation at her church in Amanzimtoti on Sunday and I feel I have to do so as my emotional state will catapult me into doing my best. I need to do this in honour of my friend. I was blessed just knowing her. On Sunday I did the talk at South Coast Christian Centre and was impressed at the pastor‚s attitude to HIV/AIDS. He committed himself and the church to the HIV/AIDS cause, which very few churches do.


Many people choose to leave their churches when they discover their status and to some extent their fellow parishners contribute to that. A reason for stigma being around and surviving is from the „holier than thou‰ attitude of some Christians. When some infected people disclose to them they choose to bring up the past e.g. why were you having pre-marital s.x, why did you have an affair, etc?‰ Maybe I do not understand Christianity fully. Should we not love our brother and sisters as God loves us or do we constantly have to judge others? He who is without sin, please cast the first stone. Is a person who lies, cheats, steals, murders, rapes, envies, better than an HIV positive person. I think some Christians are too spiritual and heavenly for any earthly good. Actions speak louder than words. No one needs to tell me they Christians their actions should just reflect that.


On Sunday, 9 June, by ex-boyfriend phoned me from Sweden and he asked me about my friend and I told him she had died. He asked me how and I explained. He seemed shocked. I then said „..what if I tell you that I am HIV positive..‰ . He said he did not think it was something you joked about. I eventually convinced him I was. He told me HIV/AIDs were virtually non-existent in Sweden. He asked me how I could choose to still stay in a third world country who even after 20 years did not respect their citizens enough to supply antiretrovirals. What response was I suppose to give him.

On 16 June I did a talk for Youth Day. It is always amazing to see the fear in people eyes when I disclose. But I am glad I look the way I do, so people can really see that they need to be more cautious when engaging in s.xual relationships because you really do not know what baggage the other person has. An English guy spoke to me afterwards and told me how he had been in Botswana and had unprotected s.x and after listening to my talk would definitely be going for a test. What amazed me was I would assume that he would have been more informed and know about the HIV history of Africa. Yet this had not deterred him from having unprotected s.x.


22 June was my birthday and I had been accustomed to my friend phoning me each year and getting people to sing to me in the background but this year was different, she was no more. How I felt the gap. However, I enjoyed the day with members of my support group, church and my mom.


On 7 July my friend Alett came down from Johannesburg. She had known I had been ill with shingles and wanted to know how I was. I disclosed to her. It was sad for me to see how she tried so hard to contain herself and her tears for my sake. All in all it was an enjoyable HIV weekend.


On Friday, 12 July I was invited to do a presentation for a departmental team building exercise. I admired the initiative taken by this manager. I think that most of the staff thought I was there to talk about condoms and aids stuff. So it was heartening to find out later that I approached the topic from a different perspective as by now I think HIV/AIDS is draining people. A question that concerned me was „Is HIV contagious? If it is a virus, like the flu, then why is it not contagious? Thereafter this Manager took a further step by inviting me to be part of a HIV/AIDS road show for his department. This to me really shows commitment. For some reason this weekend my shingles seemed to play up. Where I had been cut, my shingles seem to bubble up and ache. I still need to be thankful that I am alive though.


Today, 18 July 2002 I received a donation to pay for my car, I attended a meeting and thereafter a colleague gave me a packet containing various herbal tea and honey. I was unsure if my mother had told her to buy it for me as the day before, my mother had told me to get herbal tea and take honey instead of sugar. I burst into tears (this time from joy). Two hours later, I had a call for me to meet someone at reception. When I got there, I was presented with a cheque for R500 (honorarium) for talking about HIV/AIDS at South Coast Christian Centre. These are material blessings


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