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A long path page two

I realised that my life would change forever. I also realised there was a need for me to educate people and make a difference in their lives as there was already a marked difference in my life.

Wednesday morning, I decided to disclose my status to Gloria. I said ‰Glo I‚ve got to go for counselling today.‰. She responded by saying „. it would be so much better if you knew your results before going to counselling.‰ I told her I did and she seemed confused. I could feel the tears swelling in my eyes as I told her. However she was great. She explained to me she had lost family to HIV and would look after me while we shared the same office. That was a consolation, as the reason for me telling her was, I did not really know how HIV affected people. I did not know whether I would have mood swings, faint or just really get sick. Ignorance of the disease on my part.

I went for counselling. I was upfront about my feelings
· I had no interest in finding out who or where I got the virus from. Because if I knew, that would add no value to my life. I did not need unnecessary anger, vindictiveness and stress in my life at that point.
· I was determined to change my lifestyle
· I always knew from a child I had a poor immune system
· I had had cancer and overcame it
· I was not ashamed of being HIV. I had no need to be. I had not invited it into my life. I knew it was there. I was certainly not denying I was HIV positive
· I was not willing to talk to any virus. I was not going to give it any pedestal/status it did not deserve
· I believed I was being thrown a last lifeline to improve and adopt a healthier lifestyle
· I would have to learn how to embrace this disease
· Whether I got HIV from two fighting car guards, from blood transfusions or from unprotected s.x was irrelevant to me or to anyone else.
· A good attitude can bring success whereas a poor attitude can bring destruction.
· My focus was on building a bigger, better immune system.
· I was bigger and better than this virus.

Maybe, my counsellor was not ready for someone, who by day one, had already disclosed within 10 minutes of knowing her status and who was ready to move forward. But, what she thought was irrelevant to me, as this was about me and I was number one.

Something I never understand is, why people want me to make friends and/or talk to this HI Virus. I never spoke to the flu virus or any other illness for that matter and neither do I make friends with the flu so why should I talk to this virus, is it more important than me? Why can I not just talk directly to God if I need someone to talk to?

That afternoon, I experienced pins and needles and cramps in my feet. My one foot was all turned up and painful at 3.50pm. I asked Gloria to get me salt as I had remembered many years previously, an acquaintant of mine who constantly had cramps, always asking me to run to the kitchen to get her salt when these attacks came on. I found a sachet of salt and within seven minutes the cramps had gone. I now had to walk home. I was scared, as I did not know whether I would have another attack on my way home or whether this was the beginning of many more illnesses attached to HIV. There would be no Gloria to help. However, I did manage to get home without another attack.

Thursday, on my way home I decided to pop in to see a friend of mine, Mbali. I walked into her office and told her I had good news for her. She was all ears, beautiful smile and all. When I told her, I could see her smile disintegrating and replaced by a frown. She took me to a psychic friend of hers, Monica, who tried her best to motivate me and create an air of enthusiasm. She introduced me to Moducare and explained to me that I should take up yoga to help me relax and sleep. She also suggested that I get a book by Louise Hayes. I felt a tad better and by 9.30pm was in my bed. I realised I was going to be introduced to a wealth of information/interests both positive and negative. Life is about choices and it was up to me to take what added value to my life and leave what did not.

For the whole of that week I had pins and needles, which was an irritation. I was afraid about how I was going to cope with this. I would get them at 4.00am and I then had to throw myself off my bed, crawl to the kitchen until I got the salt. I soon learnt to put salt water next to my bed every night before I went to bed. For the first time, living on my own was not a good idea.

 

Friday, Louise came to my flat with some false story of what was wrong with me. She had phoned my mother, without my permission and told her that I was lying covered in rashes and dying of cancer. This angered me. She had no right to lie to my mother and go behind my back and phone her without first asking me what was wrong with me. I disclosed the truth to her. I remember, quite clearly, her rubbing my back and telling me she was my friend and would always be my friend. That was the last I saw or heard of her. This was my first bout of rejection. I told Bill. He hugged me outside the lift saying it did not make a difference to him whether I was HIV positive or negative. He seemed cool with it. That was the last I saw or heard from him and yet he lives on the floor above me, in the same building.

 

I have now taken a stand against people who choose to walk out of my life „that -they must carry on walking‰. If they do not have the decency to support me when I need support, there is no need for them to be in my life now. You cannot choose to be a friend when it suits you. You are either in for the whole hog or you out for good. Seasonal acquaintances I certainly do not need. People who choose to walk out of your life have fulfilled their purpose in your life and need to move on
However I have learnt I do not need to be angry with anyone who chooses to walk away from me as they have fulfilled their role/purpose in my life and it is time for them to move on. People are in your life for a season, a reason or a lifetime.

On Saturday, my mother phoned and I had to tell her the news. I think she was in denial. She asked me not to tell my father, as she did not think he could handle it. She also asked me not to tell my siblings. She did not believe it was true; it was a big mistake and would go away. Mother has certainly grown since. I think she reads up and listens more about any HIV related topics than I do. She knows more about what food I should or should not eat.

 

Life has it‚s own way of weaving itself. I had not spoken to my friends Carl and Serina for about 3 years and out of the blue he called me up. I embraced his call. He came to see me and we resumed our friendship. They came back into my life at the right time. They embraced me, HIV and all. The only thing that drives me insane about Carl is his constantly need to tell me „this should not have happened to you, chicken‰. Does he constantly need to remind me and another thing why should not me? What is so special about me? It can happen to anyone.

 

Doreen took me to a doctor who specialises in HIV. As I got out of the car I looked up to the three floors in the HIV hospice/hospital and saw people staring down at me with death in their eyes. I walked into the reception area, which was full of people. All the people there, bore no resemblance to myself as they all were glassy eyed and looked like they were on death‚s door. This was not the cleanest of places. I felt I was somewhere else in Africa in some makeshift hospital. I was uncomfortable. I heard the doctor tell a patient „that it was too late, I cannot do anything for you‰ I turned to Doreen and told her I was sure that I was in the wrong place. She was adamant that I just needed to speak to the doctor I really just wanted to run away as what difference was talking to him going to make in my life, how was it going to change my status? But I love and trust her so much; I waited with her while she babbled on about any and everything to take my mind off my status.

Finally it was my turn. I met the man, but I was not my talkative self. When he asked me how I felt, I told him I had been positive and fine until I had entered his rooms. He wanted to know why. I told him that everyone looked like death. He explained to me that I could live a long life provided I took medication, ate correctly šeliminated margarine or butter and replaced it with olive oil and concentrated on eating soya products, exercised regularly, adopted a positive attitude and found a boyfriend. I found the boyfriend part strange. How could I find a boyfriend without telling him the truth. If I told him, he would run like hell. The doctor‚s response was that he obviously was the wrong man. I then explained there would be a lot of men running like hell. He agreed until I found the right one. I dispelled that part for the moment. The doctor was summoned for an appointment and had to leave. I had enjoyed talking to him but had not had closure (he had not answered all my questions) and he was gone. He was a very charismatic man.

 

My friend, Wendy, arrived from Australia. I had not seen her in 10 years and to now see her and disclose my status. She was cool though. We spent Sunday together visiting her family and also hearing what people thought about HIV and infected people. What I heard was difficult to swallow. Are people supposed to be ashamed of their status? Before leaving for Australia she asked me for a photo of myself. I got the impression she needed something to remember me by as she was unsure whether she would see me alive again. It was a sad departure because I was not sure whether I would see her again.

 

Christmas Eve, I went to work and complained bitterly about my back. I kept asking Sydney, Lucy and Gloria to rub my back, but to no avail. When I got home, I asked a young girl, Nandi to rub my back. While rubbing my back, she informed me that there was a little ring of pimples on my back. I asked her to poke into them. When she did, I screamed like a banshee. But again through sheer ignorance did not take much notice, as I knew that when you are HIV you developed different rashes and in my mind it was welcome to the HIV club, you have just got a new rash.

 

My colleague, Lynn, came up to me and told me she believed that I had shingles. I acknowledged it. She then said I should go and give blood, as my blood was much in demand. I nodded my head and as she walked into the lift the tears came plummeting down, if only she knew the truth, no blood bank needed my infected blood. It was difficult for me because I was being dishonest but it was not the right time to disclose to her, I did not know her well enough.

 

However, later I went with Carl to fetch his then girlfriend and told her mother and herself about my painful rash I had on my back. They told me it was shingles. I had not heard of shingles before. I certainly did not know what it was and I certainly did not know what to expect. Carl had shingles a few years ago and told me how painful it was. I was staring at Carl thinking „you also are HIV positive‰ but that was out of share ignorance as not everyone who has shingles or TB is HIV positive. His girlfriend‚s sister had shingles on her face. Wow, what a Christmas present. December was now an eventful month. Firstly, being diagnosed HIV and then shingles.

 

Christmas morning, as I drove out my building, Erica phoned me to wish me and I remember telling her I had nothing to celebrate. I then disclosed to her. As soon as I told her, she said, „I still love you, bye‰. I was left confused. I did not hear from her again in 2001. She phoned me in 2002 and told me she was too shocked and was shaking the whole of Christmas Day, as she knew me to be a safe s.x, careful person, so she just could not believe it. She was also afraid to contact me straight away as I might feel she was feeling sorry for me. I explained to her HIV people needed love, understanding, support and prayer (LUSP), they certainly did not need a „pity party".

 

I went to church and enjoyed the service. At that stage I was unsure whether it would be my last Christmas. Thereafter, I went to my cousins to wish them. One looked up shingles for me and explained a bit to me. I understood what I was in for.

I then went to Carl for lunch. By now I had more shingles on my tummy near my navel. The pain was there to stay. Zarina and I went to the movies but I could not enjoy them as I was in too much pain. I was rocking from side to side in the chair. I was home by 8.30pm.

 

My brother, Cuan, phoned me from Cape Town at about 11.30pm Christmas night and I disclosed to him. He was disappointed that I had not seen fit to tell him and had he not phoned me, I probably would not have. This was the first time I really, really cried. But you know what, I felt better for it. I was in a lot of pain and I could not drive myself to Addington Hospital. I was frustrated in that I felt my independence was being lost. I would now have to rely on people for most things, this irritated me.

 

On Boxing Day, I got up early and pain or no pain drove myself to Addington. This would be the start of my many Gulliver‚s travels there. I was screened, and then sat in a queue to see a doctor. After quite some time I was attended to by a spiny, old doctor, who seemed irritated by the number of patients. I was spoken to abruptly and for the first time felt like a leper. He told me I had shingles and provided the dispensary was open, he would supply me with a course of tablets (Cyclovir). I was given Calamine Lotion and Panado for pain. I got to the dispensary and was told by a very young gentleman that they only had ten tablets for me and I needed twenty five tablets (5 tablets x 5 days) and that I had to return to Addington the next day to get them as I could not proceed with the second days portion until I was sure I had the other 15 tablets. Amazingly through all the pain I knew I was going to make it through these shingles. Shingles did not make me and it would not break me.

On Thursday, at 5.45am, I was again on my journey to Addington. As I got to the corner of Winder and Gillespie Street, my car bombed out. This was the first time in my life I had, had a breakdown. Now think of the area, the time and my painful condition and my personality. What a combination. I managed to find someone who pushed my car on to the pavement. I left my car there and walked to Addington. When I got there I discovered that I had to get my file and that could only happen at 7.00am. I walked back to my car, where a pedestrian told me the police would tow my car away as it was parked on the pavement. Together with some car guards we pushed my car. I decided to take a taxi home and try to get someone‚s telephone number to assist me. I do not know any mechanics. Unbeknown to me, some Nigerians had watched me leave my car, get in the taxi and definitely did not anticipate my returning soon. I arrived back to find they intended to take my car. A fight broke out with me getting a bit physical and the Nigerian kicking me on my shingles. By the time the police arrived the criminals had left. My reason for fighting back was there was nothing to live for.

The car guards had taken my Addington card in an attempt to assist me. After the tow truck had taken my car, I went to Addington, but could not find the car guards. Frustrated and in a lot of pain I went back to work. At lunchtime, Sydney took me back to Addington. The car guards had brought Addington to a standstill about the bad service I had received.

In the midst of all this madness, I saw my dear doctor and told her about my shingles. She told me the pain would last from 1 to 3 months. I told her the doctor I had seen, had said two weeks. She told me I could choose whether I wanted to believe him or her. Humanness is usually lacking in doctors.

 

Finally, I was sent to the HIV unit, where a file was made for me within 2 minutes. I went back to the dispensary where I was told by a middle-aged woman that I had been given the wrong dosage the day before. I was supposed to take 20 tablets a day for five days=200 tablets. I was given 200 tablets and left Addington. I could have sworn this was a blue Monday, but it was a Thursday.

Imagine what I had been through in one day, this was just two days after Christmas, talk about Christmas spirit:
· I had my car breakdown
· I had almost had my car hijacked by Nigerians outside the Blenheim and been kicked on my already painful shingles
· I had tablets wrongly prescribed
· I had, had car guards bring Addington to a virtual standstill about poor customer service.
What a festive season.

 

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