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A long path page one

I had been sick for two months with Flu- like symptoms. Going to work everyday and pretending everything was all right, when it was not, was eroding my personality.

· My skin felt like crocodile skin, dry and flaky Very weak
· Losing my memory No energy Could not sleep
· My hair was falling out in bunches No appetite
· No taste Little sore throat Swollen neck gland

My first impression was I had the flu, so I stayed indoors the whole weekend, nursing myself and took all the tablets and medication I could find in my flat for it.

· Flutex Disprin Paracetamol Guronsan C
· Vitamin C tablets Cough Mixture Salt water

By Saturday afternoon, I had a rash all over my body. My face was Black with navy blue marks on my face. However, there were no sores. I looked a mess. Do you know when you watch science fiction movies or Charm for that matter and the person face is a mess that is what I looked like š movie stuff.

Monday, I still went to work but really felt awful. By Tuesday, I could not get my head off the pillow and knew I needed help. A doctor was called, who looked into my mouth and took me to the mirror on my lounge wall to show me that there was a growth at the back of my mouth, full of puss and blood. I could not believe that such a thing had grown in my mouth without me feeling it, when I brushed my teeth.

I undertook a R13 000 journey going from doctor to doctor, taking every anti-biotic possible and wasting money I never even had. So not only did I not feel better, but also I was burying myself deep in debt. I had not slept nor really eaten for two months and yet I had not lost a kilo, instead I had put on weight, which was blamed on a metabolism problem. It is so amazing how many people become doctors overnight in a bid to help. Many people told me I had an inactive thyroid gland and should get it seen to.

I have to admit I knew something was horribly wrong with me but at NO stage did I ever think I was HIV positive.

Finally, after much deliberation I decided to get up early and put my pride in my pocket and go to a government hospital, Addington Hospital. This in itself was a challenge: I arrived there at 5.30am waited in a long queue, even at that time. Finally, I paid my R13.00 at 7.40am. I then waited in another queue to see a doctor. At 10.00am, I saw Dr Padayachee who immediately diagnosed me as having one of the following:

HIV Throat Cancer Node TB

It was like she had literally bashed my head in with a rock. I could not comprehend her three choices. She dismissed my Thyroid Gland diagnosis and was adamant I had one of the above illnesses. I looked much better when she saw me, compared to when the other doctors had seen me and they had not even suggested such. She told me to have blood tests done. I refused to do the HIV test as I have always had problems giving blood (small veins). Unaware that the other two tests were also blood tests. She told me if I had throat cancer, no surgeon would touch me knowing I had not had the HIV test, I finally relented and agreed to the blood tests.

I went for the X-rays and peeped into the envelope and saw they were clear. At this stage I had already decided I was not going for any blood tests as the doctor was on the wrong track. I was going to go to the dispensary for my sleeping tablets and runaway. I took the x-rays back to her and she told me the TB part was out. She noted that I still had my blood bottles in my hand and I finally agreed to go and have the darn blood tests done.

I had always heard how going to a government hospital was a nightmare but I never thought that one day I would end up there. You made to feel like a leper and it is as though every employee there, is doing you a great favour. I never saw smiles, as for customer service I‚m not sure about that one. As you walk along the corridors you see frightful sights. I really appreciated having previously gone to St Augustine‚s and Crompton Hospitals, however a government hospital is a different kettle of fish. Just the appearance of the floors, wards, seating arrangements, walls, etc makes one feel down and out but fortunately not down and out in Beverley Hills. Sometimes you feel your circumstance is the worst but after an hour in a government hospital I felt whatever was wrong with me was mild compared to the circumstances of other people I had met. In general a very humbling experience. It is always good to see the light at the end of the tunnel even when you do not know what the tunnel is all about.

The blood tests were an adventure of their own. Finally it was over. By 11am I had completed my mission I then had to go to the dispensary for my tablets. I only received my tablets at 3.50pm. What a day!! As I walked out of Addington Hospital all three illnesses suddenly hit me (reality shock). I cried and decided I would walk home from Addington. The Esplanade wind would blow my tears so no motorists/pedestrians would notice I was crying.

At work, the next day, I was asked what had happened at Addington. I fell apart and cried and explained the occurrences. I was asked if the doctor had sent me for counselling before telling me to go for the blood tests. I said the word „counselling‰ had never come up. I was asked if I minded if counseling was organized for me. I certainly did not mind, as anything at that stage was better than nothing.

 

That afternoon I went for my first counselling session. I spoke from my heart. My counsellor wanted to know what my strategy would be to cope from that day until 3 December 2001. I told her it would be one of denial. She felt I should journalise my feelings and document my thoughts. I disagreed, if I was to adopt a strategy of denial, how could I confront my feelings and journalise them. That night I decided that I would adopt a denial approach to the matter until Monday, 3/12/01 and deal with the outcome then and I literally did.

 

I contacted my friend, Delene Engelbrecht, and explained my plight to her. She traced my blood to King Edward Hospital and told me there were only two ampules of blood. One was for the HIV test and the other was for Mononucleosis (Kissing Disease/Chronic Fatigue Syndrome). I was confused, as 3 ampules of blood had been taken. I had never heard of this illness. At 3pm that afternoon, she phoned me and told me to get to a computer and look up Mononucleosis. I set to work to find out all I could about the disease. All the symptoms were similar to mine, including the constant wishing for ice cream and cool drinks, as each day when I awoke, the only food I craved, was ice cream and a cool drink. Delene had made up her mind, as well as mine, that I had mononucleosis.

 

By Friday, the 30 November 2001, I had become a bit restless, as I had assumed that Delene would have got my results for me, but she had not. I now had to contend with waiting another weekend for results. You know we know when something is wrong we choose to ignore it. We hear all the whispers sometimes even screams but we choose not to pay much attention.

On Friday, Mary asked me to prepare a speech to present at her Women‚s Day event. I did not understand why she had asked me and yet she had asked me to do this several times before, as Public Speaking/Community work is what I enjoy doing. However, this time seemed different. By Saturday, I still did not know what to talk about. Finally at 5.45pm on Saturday, while I was in the bath it dawned on me that it was Saturday, the 1st December 2001 and it was World Aids Day. I finally realised why she had asked me to do the talk. She knew the choices I was faced with. I made up my mind there and then to talk about my feelings, what I was going through and how I was coping until Monday (D-Day). Most people at the Wome'‚s Day event felt I did not resemble a potential HIV positive candidate. It was reassuring to know that there was some kind of hope, as „I did not look the part

 

Finally Monday, 3 December 2001, arrived. I was at Addington Hospital at 5.30am. I was confident, as I was certain, I had mononucleosis. Everything went wrong. The nurse who is usually there at 6am was not, the doors of the waiting room were still closed at 6.20am, only 1 cashier had arrived for work and only one doctor was on duty.

At 8.50am I was outside dear Dr Padayachee‚s rooms. I then realised that my cell-phone had been off since Sunday. I listened to my messages; there were two from Delene, 1 at 5.50am asking me to please phone her, as she wanted to be with me when I got the results and another at 6.30am begging me to phone her. My phone rang and it was Delene. I told her the doctor had just called me in, so she should phone me in about 10-15 minutes. I could not understand why she felt the need to be with me when I received the results as Mononucleosis was not such a serious illness and I could handle the news.

I walked into Dr Padayachee‚s office still very confident. She informed me one ampule of my blood had clotted (the missing ampule). She then went to the computer to get the other two blood results. However, the computer froze. She told me to come back the following day. By now I was irritated. I told her I would wait until the computers came back on line. My life had been on hold for two weeks and now I had to return the next day. What would happen if the computers were still frozen the next day, would I have to continue returning day after day? I told her I would wait outside.

 

As I walked out the doctor‚s room I saw Delene outside. Now I was really confused. Why was Delene there? She sat with me a while, then left as she had an urgent phone call from the Technikon. At 10am, Dr Padayachee informed me that she could not work as she had forgotten something at King Edward. I then informed her that I could not work or live not knowing what was wrong with me. She then gave me her telephone number and told me to phone her the next day (Tuesday, the 4th December 2001). I asked how I could suddenly get my results telephonically when two weeks previously; I was told I could not. She said this was an exception. Again I should have been preparing myself for negative news given everything that had gone wrong today, the doors opening late, only one cashier on duty š even that one arrived late, only one doctor, my blood clotting and the computer freezing. How much screaming did I need to hear or was I just ignoring the warning signs.

Finally, Tuesday arrived. At 8.40am I finally got through to her. Still feeling positive I asked her for my results, she said it would take long as she had to go into King Edward‚s virology department and being my usual tongue-in-cheek self I said „That's fine, I have all day to wait for you‰. A few minutes later she said she had bad news for me. I still joked, „Oh my blood has clotted again‰. She said, „No, you are HIV positive‰. I choked. She then told me I could come in and have a re-test. I knew I could not do that. She said if I wanted, she could recommend someone speak to me or I could speak to her. There was no way, at that stage; I needed to speak to her. She was too cold and mechanical. I thanked her and said goodbye. I really do not believe that many doctors have the skill or finesse required to disclose to patients. I realize that many people feel „Oh! What the big deal, so you know your status so get on with it.‰ Really, it is easier said than done, it is not you, that is why you talk like that. It is not so much what you are told but how you are told. I was now choking and as much as I needed answers to so many questions I could not ask her as there were people laughing and joking in the office around me while my life had literally ended. To ask would also mean disclosing my status to the laughing people and I was not ready to disclose to them then.

 

I could not turn around because Gloria was still in the office and it was too fresh/early to tell her then. I was gulping and trying to fight the tears. I kept encouraging her to go upstairs to the awards ceremony and for some reason she just seemed to prolong my agony. The irony was, she was going for voluntary saliva testing and I had just got my results. Finally at 9.05am she left the office. My explanation to Gloria was‰...my blood had clotted‰. I was playing for time.

Every fear, inadequacy and insecurity came to the fore. My immediate thoughts were:
· I live on my own, how would I manage?
· My life would go from independence to dependence
· I would end up cripple and in a wheelchair. Who would be pushing me around?
· I did not know how HIV physically affected a person.
· The building I lived in was not geared for physically challenged people.
· I did not have a permanent job. How would I cope financially?
· I did not have medical aid. This would mean constant visits to Addington. How I would hate that.
· Antiretrovirals (ARV‚s) were not freely available and were costly at that.
· How would I handle rejection? This was not like telling someone you have cancer. This was different.
· I had spent approximately one year working at the HIV/AIDS conference and had really learnt zilch.
· I was not close to my family how do I suddenly pick up the phone and tell them.
· I realised how I had a mental block when it came to this disease.
· I was HIV/AIDS IGNORANT

I decided to sit at Gloria‚s workstation so I could really cry without anyone seeing me.

I decided straight away I would disclose. My reasons being:
· I needed all the help I could get
· I had nothing to lose
· I could not manage this disease on my own
· Fear of the unknown
· My personality is such. I cannot keep something in that is bothering me.
I knew I would definitely not be going for a retest. I was not ready for confirmation.

I just got to sit down at Gloria‚s desk and just let the first two tears drop from my eyes when Doreen Wilson walked in and said „And now, what‚s with all these tears‰. I told her „Dr Padayachee‚s just told me I am HIV-positive.‰ She replied „...and now we know, what are we going to do about it. There is no use crying we have to find a way forwardá I am not going to allow another person close to me to die of this disease, we know early and we can do something about itበ(These would be the best words/advice I received) Well the tears just froze where they were. I needed that and her, at that moment and thank God that she handled it that way. We talked for a while and I felt better. I knew immediately that this woman would be my tower of strength. Her words „now we know what are we going to do about itá‰. It was not just about me, we were a team „we‰ instead of „you‰ was used. She did not cry, she did not look down, she did not shake her head and she did not run away. It was our problem, she halved my problem. The race card gets played many times especially when you in a corner, well it did not work this time. There was a White woman who promised to do whatever she could to help me. It was not about the colour of my skin it was about humanness. Colour was not the issue, love, care and assistance was. Delarise has a problem what can I do to help, not well she is not White therefore she‚s not right. She is a Christian and her Christianity was put to the test. I never understood why we met, why we connected nor why she even liked me. I remember her telling my mother on my birthday „you have an amazing child‰.

 

I immediately phoned my counsellor to tell her my results. She was amazed that I was told over the phone. She asked me to come for counselling immediately. However, I did not feel I was ready or in need of counselling then. I reminded her that we had previously scheduled counselling for Wednesday, which was the next day, and I was comfortable with that.

Later someone phoned me and came over. But she cried. I did not need tears at that moment. Greg walked in to find two tearful ladies. He was dismissed quickly. I now had to continue to work and pretend that everything was fine. It was not. I believe when you are told your status you definitely need a strong, emotional person with you, even if they pretend for the moment. This was the start of my new life, a new beginning. I love challenge but did I need or deserve the HIV challenge.

At 1pm I went downstairs to Doreen and told her that I had decided to join the library. I think even then, my survival skills had kicked in. I would read whatever I could about this disease or read sufficient motivational books to keep me sane. Reading was my passion years earlier, so I renewed this passion.

 

At 4pm, I decided I did not want to go home so I walked to my cousin‚s flat in Aliwal Street. I walked into her flat and casually told her that I was HIV-positive. There was a guy sitting there who after 5 minutes asked me if I was serious. I told him I could not be more serious. We continued discussing the matter. This 24-year old youngster again interrupted me, asking if I really was serious. I again told him I was and asked him why. He told me I was pleasantly plump to be HIV. He also said he did not know of any Coloured people who were HIV. I told him he now knew someone, so if he was under the impression we were immune from HIV he was sadly mistaken. I also told him that I did not believe I was the only Coloured person who was infected. He later explained to me that he did not use condoms and slept around most weekends with females he met at clubs. I told him that anything that was too easy or too good was not all it was made out to be. I also explained to him that for 5 minutes of pleasure he would have a lifetime of pain. Who were these females sleeping with before he came along and whom were they sleeping with now, maybe they were having the last laugh. I knew I had struck a cord. When his friend came to fetch him later he told the friend to listen to what I had to say. He then told me he needed to bring another friend to see me, as his friend‚s s.xual promiscuity was worse than his. I had really touched a nerve with this guy. He promised me he would be going to have an HIV test.

 

It was dark, probably around 7.15pm when I left my cousin‚s flat to walk home. For the first time I was not scared of being raped. I would welcome the rapist into my HIV club. I was definitely not going to be selfish with my s.xuality this time; I was willing to share the HIV virus. If someone forcefully wanted to have s.x with me then they deserved everything that came with it, HIV and all.

 

I walked into my flat and started crying and suddenly felt I needed to get on the phone and apologise to the whole world. Something said, „Snap out of it‰. I left my flat and decided to go upstairs and pray with a prayer partner. When I got to her flat I disclosed to her. She was visibly upset and told me about a man she had been sleeping with, without condoms and whom she knew was promiscuous. She was now worried about herself. I asked her to be strong for me, as her falling apart was not what I needed at that particular time. We prayed and I left.

I went to someone else in my building that fell off her couch in shock. More shock for herself than myself. She suddenly related her s.xual activities with multiple partners without condoms. I saw the fear in her face. This frightened me. These disclosures on my first day made me see there were more people afraid of their own status than mine. This day was an eye opener for me. I was exposed to ignorance of the disease, insensitivity, love, other people‚s s.xual activities, sadness and mixed emotions, all in one day (4TH DECEMBER 2001). A DAY I NEVER WILL FORGET. The day of a new beginning for myself.

 

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