A Journal: Raising Awareness/Sharing the Lessons on
a Personal Journey through HIV/AIDS Delarise
Mulqueeny, South Africa
I had
been sick for two months: Flu- like symptoms. Going to work
everyday and pretending everything was all right, when it was not. It was
eroding my personality.
* No appetite Little sore throat Could not sleep
* No taste Swollen neck glands No energy
* Losing my memory
* My hair
was falling out in bunches
* My skin felt like crocodile skin, dry and
flaky Very weak
My first
impression was I had the flu, so I stayed indoors whole weekend and nurse
myself and took all the tablets and medication I could find in my flat for
it…..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.
Monday, I still went to work but really felt awful. By Tuesday, I could
not get my head off the pillow so I decided to call a doctor….
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 go to the hospital. This in
itself was a challenge: I arrived there at 5.40am waited in a long queue, even at
that time. At 10.00am, I saw the doctor, 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. 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. 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 favour. I
never saw smiles. As you walk along the corridors you see frightful
sights. Just the appearance of the floors, wards, seating arrangements,
walls, etc makes one feel down and out but unfortunately 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 still mild compared to the circumstances of
other people I had met. 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.
At work, the next day, I was asked me what had happened at the hospital.
I fell apart and cried and explained the occurrences. I was asked if the
doctor had sent me for counseling before telling me to go for the blood
tests. I said the word "counseling" 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 counseling session. I spoke from my heart.
My counselor 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.
By Friday, the 30 November 2001, I had become a bit restless. 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 do
best. 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 Women's Day event felt I was too pleasantly
plump to be a potential HIV positive candidate.
Finally Monday, 3 December 2001, arrived. I was at the hospital
at 5.30am. I was confident, as I was certain I had
mononucleosis instead of HIV or cancer. Everything went wrong. The nurse
who was 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 my dear doctor’s rooms. I then realised
that my cell-phone had been off since Sunday. I listened to my messages;
there were two from my friend 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 the doctor’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?
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. At 10am, my doctor informed me that she
could not work as she had forgotten something at another hospital. 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.
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 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 most doctors have the
skill or finesse of disclosing 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.
Every 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 do not have a permanent job. How would I cope financially?
* I do not have medical aid. This would mean constant visits to a
government hospital. How I would hate that.
* How would I handle rejection? This was not like telling someone you
have cancer. This was different.
* I did not know how HIV physically affected a person.
* I had spent approximately one year working at the HIV/AIDS conference and had
really learnt nothing.
* 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 a co-worker’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 could not manage this disease on my own
* Fear of the unknown
* My personality is such
I knew I
would definitely not be going for a retest. I was not ready for confirmation.
I just let the first two tears drop from my eyes when another woman, a friend
at work, Doreen, walked in and said "And now, what's with all these tears".
I told her "The doctor 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 forward... 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 it..." (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. I never understood why we met, why we
connected or why she even liked me. I remember her telling my mother on
my birthday "you have an amazing child".
I immediately phoned my counselor to tell her my results. She was amazed
that I was told over the phone. She asked me to come for counseling
immediately. However, I did not feel I was ready or in need of counseling
then. I reminded her that we had previously scheduled counseling 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. Another co-worker 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.
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. I walked into the flat and casually told her that I was
HIV-positive. There was a 24-year-old guy sitting there who after 5
minutes asked me if I was serious. I told him I could not be more
serious. He told me I was too 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. 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 sexual 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.
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 who 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 who fell off her couch in shock.
More shock for herself than myself. She suddenly related her sexual
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. This day was an eye
opener for me. I was exposed to ignorance of the disease, insensitivity,
love, other people's sexual 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. 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 a co-worker Gloria.
I said "Glo I've got to go for counseling today..". She responded
by saying ". it would be so much better if you knew your results before
going to counseling." 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 counseling. 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
* My focus was on building a bigger, better immune system.
* I was bigger and better than this virus
* Whether I got HIV from two fighting carguards, from blood transfusions or
from unprotected sex was irrelevant to me or to anyone else.
* A good attitude can bring success whereas a poor attitude can bring
destruction.
Maybe, my counselor 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 talk 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 acquaintance 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 to be 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 I did not need.
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, a friend came to my flat. I disclosed the truth to her. I
remember, quite clearly, her rubbing my back and telling me she would always be
my friend. That was the last I saw or heard of her. This was my
first bout of rejection. Another man I knew 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.
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.
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 on their way out. 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 could not 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 him.
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 -eliminated 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. I had enjoyed talking to him but
had not had closure (he had not answered all my questions).
My friend, Wendy, arrived from Australia. I had not seen her in 10
years and now to 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.
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
had shingles a few years ago and told me how painful it was. 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 sex, 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.
My brother, Cuan, phoned me 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 had 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 the hospital. I was frustrated in that I
felt my independence was being lost.
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 no 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.
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. 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 lay 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. The doctor told me my shingles had turned
septic. I had to have an injection and dressings. 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.
The most frequently insensitive question, people ask is, how did you become
HIV? 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. Do some people think HIV is a gift which comes beautifully
gift 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 sexual
history.
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!
Saturday morning, I was up early to go and find the support group 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 vaginally
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 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 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 fat, 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, ask me. What a
reality. (Any colour, race, creed, religion, etc.)
On Friday, 1 March 2002, I was invited to conduct a
presentation at a Catholic Church. I did not plan a speech. 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
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
words have on people.
On Saturday, 2 March 2002, I was invited to a Counseling
Training session at a Methodist Church to give my perspective on counseling.
I think this was good as it gave potential counselors a glimpse first hand of
what they could be confronted with. I also saw the need, more than ever,
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 sexual 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 not when we have
been having unprotected sex for many years.
I still do not fully understand how two people, who had unprotected sex 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.
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.
On the 7 April I stood up and testified at the evening service. I told
everyone I was HIV-positive. I am sure no-one if they 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 jewelry 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 the 2 May I received a response from a
professor about my disappointing treatment at the government hospital. The
response was: "... Doctor H has met with all the personnel involved
in your case and the importance of counseling 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. Your doctor has acknowledged that it was wrong of her to have
given you your results telephonically and offers her apologies ... 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."
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 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. 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 how proud 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 who I admire it would have to be her and Mother Theresa. I have learnt
so much from her, mostly about love and forgiveness.
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 "...you 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 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 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 parishioners 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 sex, why
did you have an affair, etc?" Maybe I do not understand
Christianity. 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.
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
sexual 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 had unprotected sex 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 sex.
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 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 roadshow 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.
When I explain to people being HIV-positive has taught me to live by faith most
people don't get it. I really cannot afford this disease on my own, but
only through the grace of God, I do. 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 a Christian Centre.
I really have to say HIV, is a blessing.
A lady told me how she had tried to get hold of me after hearing from certain
individuals that told her they did not associate with me because I was
HIV. I was angry and in tears. After thinking about it for 10 minutes I
realised this was just the beginning, I would still have days, months and years
ahead of me to encounter negativity and ignorance and if I was going to allow
this to depress me NOW then I would never survive the journey. So I snapped out
of my anger and got rid of my tears. Veolan says I have the art of making
tears disappear, one minute they are there and the next they have vanished.
I have to touch on the reaction of my peers/colleagues when I told them/when
they discovered through the grapevine, my status. My manager told me he
walked the other way and avoided me for about three days I laughed because I
did not even realise that. Another Manager also told me he avoided
bringing his work to me for about three days. There must be something
about three days. But generally I have been well supported and embraced
by most people who know.
I know for certain that I am not the only person who is HIV positive at
work. However I realise why they would not disclose their status.
Firstly because of the ignorance they fear rejection, lack of promotion due to
their status, humiliation and gossip. That is why I need to educate
people, as it is just so unfair for people to treat others indifferently.
I have learnt more on my own, than most counselors or peer educators have
taught me as I have a vested interest, as it has touched my life. If HIV
touches your life, (yourself, friend or family) you are definitely more
interested. I have also realised that a person, who is not HIV positive, would
have difficulty counseling me as NEVER in their wildest/creative imagination
could they ever know, what I go through each day.
On 6 August 2002, at 3.50pm I received my results
telephonically. My CD4 count is 500 and I do not need to go on
anti-retrovirals. Hooray. I would attribute my results to positive
mind, my change to Ultraguard and Phytoguard tablets, and healthy eating.
The only part left out of the equation is exercise. However, I will be
going back to the gym.
On the 4 September I attended a Secretary's day function and won two return air
tickets anywhere in South Africa. I was happy because I
really need a holiday but part of me was sad because Mary (my deceased friend)
would have been the person I would have taken with me and she is no more here.
It is Friday, the 13th, today and I have completed all the HIV/AIDS launches
and presentations. I can now concentrate on my Zulu Course and my Unisa
exam in October.
I had phoned my sister some time ago and told her I was HIV positive, but
I don't think she took me serious as she has phoned me to confirm if what I had
told her, was indeed true. I sent her this story. I phoned her a
week later and she seemed disturbed by it. She said that if I needed a
kidney or a lung she could give it to me but with HIV she could not physically
give me anything. I think she tried to justify my status by saying that
this only happened to good people. I said I would phone her back as I
could not really handle her emotions. She seemed angrier than I was.
The man from upstairs in my building and I are talking to each other. We have
never addressed why we did not talk to each from the day I told him I was HIV
positive, but that does not matter now. I really appreciate his
friendship.
I finally did the photo shoot for the HIV/AIDS posters in Gauteng, but the photos do not look
good. On my return flight from Gauteng I sat next to a gentleman who in
conversation asked what I had been doing in Gauteng and I explained to him that I had
just completed a HIV/AIDS poster photo shoot. This guy could not
understand or did not want to believe that I was HIV as he kept telling me to
distance myself from those people. I finally, loudly told him I was one
of those people. The shock on his face. I always believe people
sell their soul to me (facial expression) when I tell them my
status. During the flight he noticed that I was being affected by
turbulence and offered me his earplugs. I asked him if he was sure to
which he replied ". Yes..". As we landed I took out the earplugs
and really cleaned them in front of his face and remarked "... I really do
not want you to get infected from my ears...". There were tears in
his eyes and he said " Lady, I never meant to offend you and I
apologise but I have had to learn very quickly not to judge people and you have
helped me do so. I have had the quickest education about HIV/AIDS and I
will not forget it"
On Saturday, 20 October 2002, a French journalist came to
interview HIV positive females for a French newspaper. He told us that France had a generation of condom-users
as from the time he was 14 years old he has always used a condom and did not
practice sex any other way. I don't know how many fourteen year olds or
for that matter generally sexually active teenagers who make condoms a way of
life. I think we are still stuck in the flesh to flesh syndrome.
I attended the Botswana Aids Conference in November 2002. It was good to
discover what other countries in Africa are doing and to meet other HIV/AIDS workers.
However, my sexuality was questioned on my return trip. My colleague
questioned my abstinence and my constant disclosure of my status to any male
who even attempted to pursue me. I had never addressed this before and it
got me thinking. But my feelings: are let me tell men up front so they
know where they stand. People have to accept me with my status, not me
without my status.
I attended a counseling course at Unisa in Pretoria and this course again addressed
the sexual aspect of people living positively so I then had to confront this
issue which had not arisen prior to the Botswana trip. I have to now agree
that I did believe that I would never be involved with a male again. I
just never thought I could subject anyone to share what I go through. I
have now discovered that life is about choices and if someone chooses to still
pursue me after I have disclosed to them, then it is their business/concern not
mine. I did meet great people on the course as well.
Eleanor phoned me on the 4th December, however it was only after I had put down
the phone that I realized it was one year since I discovered my status. A
dark cloud came over me. I went for counseling at lunch time. I
felt better afterwards. Roma took me to supper because she felt I had
something to celebrate, life itself. When I got back from supper Beverley
arrived and we laughed, talked about the year. She finally left at 1.30am Thursday.
I have left the support group I attended. I now have the experience of
attending a support group and I need to move on.
I believe a HIV subculture is being created as most HIV positive people only
mix with each other as they do not want to disclose and/or they are ashamed of
their status. This is so sad that other people assist to some extent in
killing HIV positive people. To keep it to yourself must destroy
you. I am blessed that I have broken my silence and have been afforded
the opportunity to pick up the phone and speak to people openly.
Dorothy a great women, from Botswana, I met in Pretoria whilst completing a counseling
course sent me a bouquet of flowers on 4 December. She really is a honey.
I have really survived this year. A year filled with challenges and lots
of self discovery. I cannot believe that this year has gone so fast and I
am alive to tell the tale. On Thursday I received my Unisa results
for the paper I did write. I had passed, what a relief.
A couple (guy of 26 and girlfriend of 19) came to me for counseling. The
female's face just reeked with pain. She was just 19 years and this was
her reward. They are not sure whether their baby is positive as
well. There is guilt driven between both parties. I stared at her,
more thinking if youngsters out there could hear her story so would understand
that you just don't know what is waiting out there for you. No one
looking at this beautiful young lady would ever think she was positive.
So for a moment of pleasure with another person, you could be confronted with a
lifetime of pain. Is an error in judgment for five or ten minutes of pleasure
really worth it? "You are too young, don't worry about condom, do I
look like anyone who could be HIV positive, condoms are too expensive, we can
forget the condom just this once, I'm sure you trust me by now, I have just had
an test for insurance purposes are all excuses individuals make for not
condomising. Condoms should be one issue there should be no negotiating
on. Human life is just too precious to waist on five minutes of
pleasure. We need to love ourselves more and realize our bodies are our
temples and respect our bodies and nobody else should determine what happens to
our bodies but us.
I am often amazed when people say to me they cannot buy immune boosters or
vitamins, as they are too expensive. I cannot see any expense being
spared for your body/health. Why would anyone be willing to pay R650.00
for a shirt, R500 for a pants and R1000 for a shoe and yet the very body that
carries these clothes is not worthwhile spending on. Our
bodies hopefully should survive our clothes. Logic??
On Christmas Eve, as I left work at 10.05am Dees, my colleague, stopped me and
said ". Do you remember what you were going through this time last
year?" I told him I did and it all flooded back. Christmas
Eve, last year, was when I discovered I had shingles and the pain was really
unbearable. I also reflected that I had certainly moved from that afraid,
scared female and really grown. We laughed and I went on my way.
This Christmas would be different.
I've been exposed to two 60 year old White gentlemen who have just discovered
they are positive. Their varying feelings on the matter are
interesting. One feels he is waiting for God as he has lived his life,
been there done that. The other is afraid and is willing to try anything.
Both say they became promiscuous later in life and made acquaintances with
younger women and have borne the benefits of their actions. They wanted
to prove to themselves and others that they could attract younger women and did
no think at their ages they need to condomise. The CCC syndrome
applied: Cash, car and cell phone. Many men feel equipped with
these three c's to can conquer the world. Many young females are trapped
into accepting these three c's offered by older men as a means to improve their
status quo.
Veolan expressed his concern that I was not living my life and that HIV/AIDS
was dictating my life. What he does not understand is that HIV/AIDS is my
life. It has determined my way forward to a great extent, why do I need
to forget it.
I have learnt that real success is, not driving a Ferrari or living in Umhlanga
but managing to accomplish actions that allow /enable me to touch other
people's lives with good things like love, honesty, respect and most of all
hope. You do not need to be Miss South Africa or a celebrity to touch people's
lives, you touch lives with your love and your willingness to make a
difference. I have learnt to survive and understand crisis in my life and
the lives of others. I think Oswald Chamber's quote "The people who influence
us most are not those who buttonhole us and talk to us, but those who live
their lives like the stars in heaven and the lilies in the field, perfectly
simply and unaffectedly. Those are the lives that model us."
On the point of disclosure, I now better understand why people do not disclose:
* They worry about other people's behaviour/reaction to their status
* They don't know how to manage change in their lives
* They have not handled past painful experiences well and are afraid for the
same result
* They do not want to confront their past actions
* It has a spiral effect. They are afraid of the families they may hurt.
* Antiretrovirals are unavailable. Why tell people when no one is going
to pay for medication.
* They do not want to take responsibility for the past
* They are concerned about the negative worldview e.g. 1 in 4 are
infected. They do not want to admit to being part of the
statistics. I am just a number.
* Fear stigma and rejection.
* They do not know how to disclose
* It may put them in a negative light in their community or workplace
* They are in denial
* Can be career-limiting: Who is going to promote you knowing your
status. Most employers say yes, she is positive, yes she is going to get
sick (absenteeism) and yes she is going to die (retraining costs). How
many employers would employ an HIV positive person in a core position?
What I have learnt:
* I need to take time to be quiet
* I must not forget to dream
* I have to populate my life with positive people
* To forgive the hurt and anger of the past. I need to forgive ugly
people for they know no better
* Doreen was the best intervention in my life
* Love myself as God loves me
* I can choose to be the victor, turn my pain into my power and turn my lemons
into lemonade
* I am allowed to feel down and feel pain and to cry as well
* We all react differently to circumstances
* We can turn it around
* Life presents you with opportunities
* Disclosure means the deceit is gone, the lies are gone as omission of
information means lies.
* There are people out there who do make a positive difference.
* I don't need to please everyone and not everyone will like/love me and it's
okay if they don't.
* Many mistake my faith and hope for egotism and my positive outlook for
arrogance.
* I can only change me and no one else can do so. I will not change
anyone else.
* HIV is like managing any crisis/change in your life.
* People will gossip about you whether you are positive or not. Hopefully
something better comes along and they forget about your story
* I don't need to pretend I am okay when I'm not. I am human and have feeling
and I should feel them.
* I do not need to behave the way other people want me to behave. I don't
always need to smile (falsely) when I don't feel like it. I don't need to
be ashamed of having a bad day because who has not had one
* I am not inferior to any HIV-negative person. I am who I am
* People who love me, look at me as a person not as disabled.
* To enjoy the good times with the bad times.
* Matters of the heart are more precious to me than matters of the mind.
* I would not want to change my status. I love the place that I am at
now. I have a sense of purpose HIV and all.
* I will live until I am suppose to live and die when I am suppose to die
* Everything happens for a reason. Discover the reason and enjoy it
2003 What are my wishes:
* To really touch people's lives in a positive way. Make a difference -
How, I do not know at this stage.
* To find a job which allows me to devote most of my time in the HIV/AIDS field
or register a CC
* To update my story regularly. I have a story and it needs to be
told. I have survived a tumultuous year and am alive to tell the tale
* Talk more about sex and assist in destigmatising this disease. To add
another face or race to the condition.
* Hope for a cure
I have now completed four presentations for Aids awareness and am still
overwhelmed by the response I received from each. I think the message
" don't tell me u care, show me you care and action is a doing word"
is really getting through. The SMS, e-mails and telephone calls really
make light of a dark situation. I think the fact that people identify
with my pain really shows hope. I have also had some people disclose
their status as a result of the presentations and some of the stories are
really horrific. It has given me the opportunity to set up buddy systems.
I utilised my two tickets (25 April 2003) I had won. I went to Cape Town with my friend Zarina. We
had a great time, I needed the break.
I read Oprah's O magazine on friendship and felt very ungrateful for the many
people who touch my life everyday as sometimes I forget to acknowledge
them. You know Doreen and Mbali are with me at the beginning and end of
ever crisis and joyous occasions. They never forget to phone or contact
me. That is what friendship is about, not only being there for glory.
I had a HIV/AIDS breakfast workshop on the 21 June 2003. It went well. 22
June 2003
was my birthday and I felt I needed to do something to celebrate my birthday
and the breakfast workshop was it. My friend had a surprise birthday
party for me which was kind and nice of her. I have learnt to celebrate
my birthdays because I have a great deal to celebrate for, I am alive.
(what better reason). My breakfast initiative seems to be a bone of
contention to some people. Even in HIV there is jealousy and
competition. I will not allow this negativity to stop me going out there
to educate, inform and assist people. The greatest gift one can be bestowed with,
is the gift of love, sharing and understanding. HIV affords me the
opportunity daily to make a difference in people's lives by sharing, counseling,
providing hope and adding value so a few negative, insecure women are not going
to make me stop.
I fell on wet tiles in an attempt to answer my phone and hurt my back and neck
in my flat. I have been off work for 1.5 weeks. The first time I
have been absent due to an illness and it is not even HIV related. I say
this because organisations/managers still feel employing an HIV positive will
result in high absenteeism/turnover. This is not necessarily true.
This is also one of the reasons employees do not disclose as they fear that it
will be career-limiting.
As I lay on my back for the first two day, unable to bath myself and eat
properly, I noted that most people do not know what do for an ill/bed-ridden
person. I decided my next breakfast would focus on home-based care.
No one thought of washing my dishes or moving me over to one side, making my
bed or tidying up my room. How sick people must get frustrated:
they feel terrible and look terrible and everyone sits/ stands and stares at
you which makes you feel worse. People can neaten the person's hair,
clean the room, and ask what can be done to make the person feel better.
Again we only do better when we know better.
It is again cd4/viral load count time. I have put it off for almost two
months. It is amazing how these tests affect me. Most people say
"But it is just a test, go for them". Easier said than
done. On Friday, 11 July 2003, the lady from the outsourced
consultancy who handles the HIV/AIDS portfolio contacted me pressurizing me to
go for my tests and suggested I go for counseling. She does not
understand it is not about HIV I have always hated having blood taken. I
have little veins and it is traumatic for the nurse to find a vein. I
would like Doreen to go with me but she is working this week. As I looked
at my computer screen and saw the MBA results were out. My thoughts were
well you upset about blood so just make it a doom and gloom Friday and open the
attachment and see your results. Well some good news I passed. So
with all the trauma and drama that took place while I was writing my exams I
still managed to pass. If I can pass a MBA exam then anyone can.
Sydney, my colleague, and I have had a "heart to heart". He
says he could never ever have a sexual relationship with an HIV positive
female. He feels any man who is willing to have a relationship with me is
courageous. His words are "... knowing your status and he still
persists he has to have courage, because I would never.." I admire his
honesty. People seem more afraid of the truth than lies. Someone
would entertain a relationship with someone whose status they don't even know
and take it for granted they are HIV negative and entertain unprotected sex
than engage in a relationship with someone who is upfront and honest.
Honesty is definitely not the best policy with HIV or is it?
I did the P4 radio interview not realizing how many people listen to P4 radio
so I was overwhelmed with the response from people. I happened to walk
into a salon which Diane owns, not even realizing she listened to P4.
When I walked in she screamed and grabbed me and hugged me and kissed me and seemed
rather excited. She then told me she had heard me on the radio and had
said to her colleague "Jen, that's my friend" and about three hours
later I walked into her salon after not seeing her for almost 9 years.
Strange thing is, I have passed Jen for almost a year and always stared at her
wondering what she did for a living and decided she had to be in the fashion
industry. Well I was wrong she is a hairdresser/artist. Small
world.
My logo is "Positive about being positive" but Independent Newspapers
put my logo as "Positive about being HIV positive" in their adverts
for the Women's Day Forum. I was inundated with calls from people who did
not know my status, asking me how I could talk about being HIV positive when I
could not possibly understand the pain of a positive person. Judgments,
judgments. My response "Attend the forum and discover how much I
know and understand about being HIV positive".
I did an approx.13 hour stint at Umhlanga Rocks Hospital as part of their HIV/AIDS
awareness program. 40 minutes presentations from 8.00am to 8.30pm. Where do I get
the energy: When you are passionate about an issue you find the energy?
I was asked to speak at the opening of the Care for Life Centre. I do
many presentations but somehow this one was different. Why???
Because this was the first time MEN came up to me and told me the impact I had
made on them and how they needed to seriously consider where they were at and
where they were heading. I always say men can make the difference and
these men certainly were different for me. I was touched.
World Aids Day was hectic as I did 8 presentations in 8 companies and driving
from north to south to east to west. The positive was, I met amazing
people. Tracy, myself and Claire launched the HIV survival starter
kits. I had to do this because I feel this kit provides hope. I
wanted something that could be given to an HIV positive person when they
discover their status to help them cope.
4 December 2003, my second HIV anniversary really was not so hot
as finally after two years I got the flu but fortunately it only lasted that
day, not sure whether it was just a freak. I also got my blood results,
my viral load had dropped from ± 49000 to 1977, and I don't understand
it. My CD4 count however stayed the same.
February,
7th, I had my first HIV breakfast workshop for 2004 and really enjoyed
it. If the response was anything to go by I should have a good
year. Part of the workshop comprise a ten minute play wherein I acted out
every emotion and feeling I experienced on the 4
December 2001
which I had not documented. It has taken me two years to finally share that but
I am now ready. Clare cried and when I asked her why her response was "You
are so blatantly honest to everyone about details of your life". I
am not ashamed of anything that went through my mind that day because I am
human. I intend marketing that skit because I think it is important.
A lady told me how someone had asked her how she could associate with me as she
was putting herself and her family at risk. My friends are asked
"why do you kiss her on her lips". Sometimes I think I just miss the
point or maybe I am just too positive I forget about people like that or think
we have moved from there and how wrong I am. Sometimes I feel as much as
I try to do as much as I possibly can to educate people about HIV/AIDS I fail
others. Do I really fail them or do they just fail themselves.
On Thursday I asked two brothers from the 5th floor to assist me connect my DVD
and I was really feeling tired. They asked me why I was so tired and my
response "Sometimes HIV gets the better of me". The older
brother was upset and said "Miss Mulqueeny you must not joke like
that" I could not understand what he was talking about as HIV
is no joke. They did not know I was positive and after convincing them
the older brother stood shocked and said "I don't know what to say,
because no one has ever told me they were positive like you, so I do not know
what to say or do, but I could just hug you". These guys are about
19-20 years old. Is their age important????
I was phoned by someone and told there was an article in Soul Magazine about
me, so I purchased it. On the cover I was quoted as "aids victims
talk" on page 32 quoted as "Three HIV positive women tell soul what
walking in love means to them." I have written to the editor and
have had no response thus far. If the media inconsistently and
incorrectly quote me as an aids victim then what hope do I have? How much
more education is needed.
HIV people need to lean, love and learn from each other. They need the love,
support and prayers of others. If there are people who believe they or
their families are immune to HIV they need to get on their knees and pray and
thank God every day that it has not touched them.
I have to admit I have experienced rejection. On a good note though, all
the rejection I have received has been straight away. But I have been
embraced and loved more than rejected. I have had more people touch my
life in a positive way since I have told them I was HIV positive than in a
negative way. There are people out there who really care. I have
since discovered that many people reject you as a result of their own guilt,
because they think you will be a financial burden to them or they just don't
want to be bothered.
I have noticed when someone discovers an individual is HIV positive they feel
the need to tell the next person and when they do so, it is always said in this
manner"... did you know so and so is dying of AIDS...". I think
the need to make it sound negative, severe and dirty is important to them as it
makes them feel superior. They straight away start counting
the sexual partners of the individual. How many adults have not had
sex? Don't most people have sex? Have these individuals only had
one partner their whole life, have they been practicing safe sex and are they
guaranteed that their partner is not having multiple sex partners (without a
condom). When did sex become a dirty episode? If it was so dirty why are
these very individuals practicing sex. However, that superiority can die so
soon, as you just never know what is waiting for you around the corner.
There is no need for people to tell other people, it is for the infected person
to tell who they feel comfortable with telling, as it is his/her
business. People disclose to you because they see something in you which
they do not see in others so do not disclose their status, rather tell them
this is too much to bear would they mind if you shared it with so and so who
knows more about HIV.
I get many emails and sms's daily. If the person puts their telephone
number I usually phone them. They are often amazed that I take the
trouble to pick up the phone and call them. It is no trouble at all, it
is common courtesy. If someone took the time and effort to correspond the
impact I have had in their life then why can I not have the courtesy to
acknowledge and thank them.
I am on the site www.thepositiveconnection.co.za
<,
which is a site for positive people to meet other positive people.
I am not sure whether I need to date an HIV positive man? There are pro's
: You both have your status in common, you both should understand each
other's emotions to some extent, etc. but am I not limiting my
options? Why can some man not unconditionally care and/or love me for
me? My preference at this time is for a negative person and I am not
discriminating against anyone, it is my choice.. I am a female and it is
my prerogative to change my mind later.
When I see people being ugly to each other unnecessarily or just generally
being nasty I sometimes think they should be given a taste of my HIV to let
them to know they are making something out of nothing. People need to
embrace the day and each other because tomorrow might be the start of a
nightmare.
In hindsight, I now have to admire my doctor for correctly diagnosing me
straight away. Her brutal honesty only cost me R13.00, now I know the
truth, compared to the thousands of Rands other doctors cost me while they led me up the
garden path. Being HIV-positive is definitely not the end of the world and I
need to let people know that it is just a new beginning. Trust me; this
is not easy coming from the new kid on the block.
Each day is a challenge for me. Challenges are not easy, trust me.
Knowing at the end of each day that I have survived, is a bonus. To keep
smiling and thinking positively is what drives me. I know I can beat this
virus. It is 40% a strong positive mind, 25% medication 10% exercise and
25% correct eating habits. Most days are interesting. I live each
day, as if it is my last as I do not know if I will be alive to do what I
should have done today, tomorrow. It is amazing how an illness can
change your life.
HIV, I now realise, is a blessing in my life. It has humbled me. It
has improved/healed relationships in my life that had irreparably broken
down. It has created opportunities for me that were unthinkable
previously. It has made me love more. It has led me to rid myself
of all the deadwood in my life. I have made great friends. I have
met interesting, challenging and dynamic people. I have finally realised
the importance of prayer, exercise, positive thoughts and diet.
Some of us need a KNOCK to bring us back to reality. HIV is definitely my
knock.
I must write a book about my life so that I can share my thoughts, ideas and
experiences in order to enlighten and educate others. I want HIV people
to be treated as if they have a common cold. When someone tell you they
have the flu you recommend, flutex, rest, lemon, etc and yet when someone
discloses their status you are not equipped to advise them. Do you
suggest eat correctly, maybe joining a support group, exercise, etc.
I am again going to say that HIV/AIDS people need love, understanding prayer
and support.
People always say they do not know what to do for HIV/AIDS people. There
is so much people can do.
* Just go and visit an HIV/AIDS person
* Take the time to smile at them
* If you can, adopt a HIV/AIDS person
* Give such a person financial help if you can.
* Buy them vitamins/vegetables/healthy foodstuff
* Start a vegetable garden and hand out greens to HIV/AIDS people
* Cook a nutritious meal for an HIV person
* Buy motivational or spiritual book/s
* Find out what the particular person likes and act on it
* Take them to see a movie
* You can visit a home with HIV orphans
* Go and pray with/for a HIV person
* Keep them in prayer
* Find out if they are interested in HIV/AIDS articles and supply it to them.
* Do not initiate HIV conversations with an infected person. Let them
initiate the conversation.
* Do not engage in HIV jokes, as HIV is no joke.
* Open all your cupboards and everything you have not touched or used in one
year donate it. You obviously do not need it the way other people
do. There are HIV positive people/orphans out there who do not have a bed
or a blanket for winter. Why not extend your love/caring spirit to
someone you don't know.
By now you might just kinda know me better. You have shared my pain as
well as my joy. Anything that you found positive in my story you need to
take and utilise in your own life and whatever you don't need, leave it.
I need to thank
Eleanor for counseling me.
Gloria for being my nurse. I miss you now that you have gone.
Sydney and Linda for being there for me.
Thami who really does not believe that I am HIV positive and it is a bad dream
Dees for always enquiring about my
health, praying for me and seeing to my food needs.
Fortune for my cream for my shingles. You understand the pain and
discomfort.
Delene and her family for being marvelous. Miss you stacks.
Carl for constantly reminding me why this should not have happened to me.
Nombuso and her family for being there.
Lindiwe for the support and vitamin B complex tablets.
Pam for looking after me.
Sonny for providing me with superb meals.
Beverley for putting the fear of HIV in me and hijacking me to movies to escape
that fear every now and then.
Serina for your understanding.
Roma for a voice.
Greg for being such a darling.
Percy for constantly updating me with new HIV info.
Nonhlanhla for always picking up the pieces
My mother for being my mother and constantly being beside me.
My dad who believes in me and is always behind me.
My brother Robin and his wife and family for those calls
My brother Cuan for always being there for me.
Mbali for really being there for me, when I needed her. Those much needed phone
calls. Friendship/humble
Lydia and Naomi for their support, love and prayer
Lucy, Michelle and Malcolm for putting up with me.
Everyone at my church - their thoughtfulness and prayer
Everyone for their prayers/sms and emails.
All the kind, caring people who touch my life everyday with their words/actions
Doreen for being the angel that she is. Her love, craziness and kindness
really drives her and myself as well. She is a woman who has nothing,
(materially) but really has everything. She really is blessed and a
blessing.
God for enveloping me with love. God sends people into your life to appreciate
your real beauty, your real essence. It is the kind of beauty that lasts
in a face full of wrinkles, gray hair, falling arches, crow's feet and all the
pitfalls that may come your way. You never realise why people are placed
in your life or you in theirs. The greatest part is, when you discover
the reason why.
Please excuse the grammar and spelling I am sometimes very emotional when I
write but I am not apologising for who I am.
You can contact Delarise Mulqueeny at: delarise@mweb.co.za
