How did it get to be December?
And suddenly it is World Aids Day.
I have been involved in HIV education and counselling since 1993 and it is a totally different world today compared to how we dealt with HIV then. I did a lot of work in helping people to accept death and making peace with their lives.
I was involved in trying to reduce stigma towards people living with HIV.
Today it is clearly not a death sentence to be diagnosed with HIV. People live long and healthy lives with HIV. And people are generally OK enough to make their status public.
What would be ideal though would be if less people were becoming infected with HIV through abusive relationships.
I still see a lot of women who feel powerless against their abusive spouses who do not care to use condoms even though they know that they are putting themselves and their partners at risk.
These are the people who worry me the most.
So it is OK to say out loud that you are HIV positive but it is not OK to ask your partner to use a condom and be respected for your choice?
My real wish is that AIDS day is not just something that comes along once a year and everyone wears red ribbons, lights candles and says a prayer. My wish is for people to have freedom within their relationships. To have the right to stand up and say no.
No to having unprotected sex, no to being treated as less worthy, no to having to answer to somebody, no to being abused in any kind of way.
To everyone who is going through a hard time – here’s to you – you, the survivor, you – with a voice to be heard.
I am constantly inspired by people like you who keep on going no matter how tough it is.
Thank you for making the choice to do things differently!
Many years ago, more than I care to think about, in my university days, I used to march and shout and speak out loud about HIV awareness and fighting stigma.
If there was an HIV event, I was there. It was probably right then that I realised that I needed to be working in an HIV related environment.
In those days, very few people spoke about HIV, people who were HIV positive kept quiet and a lot of people only were diagnosed when they became really sick.
I am so happy to say that in my environment, that is rarely the case anymore. People are more outspoken and unafraid to share their status with others and the stigma related to HIV is reducing.
During my mission to immerse myself in HIV work, I was exposed to a man who would not only change my life but would change countless other people’s lives too.
David Patient is an inspiration to us all – he has lived with HIV for longer than most and his positive personality has rubbed off on many.
With his kind permission, I am sharing what he wrote this morning:
I was going to remain silent this World AIDS day…no funny one-liners or snappy comments-just silence-…. and then I read this and it sums up everything I am feeling… takes me back to my diagnosis almost 33 years ago and reminds me of all those I have lost to HIV and how people treated us, the ‘UGLY’ back then….we may have come a long way, but we still have so far to go…. this is a tribute to all the ‘uglies’ of the world, past, present and future….
This abandoned little kitten was found wandering the streets, and every time people saw him they’d shy away from him because he looked ugly and sick. His name? Ugly the cat. One man took pity on the poor thing and shared his love with Ugly, before he died in his arms.
Everyone in the apartment complex I lived in knew who Ugly was. Ugly was the resident tomcat.
Ugly loved three things in this world: fighting, eating garbage and shall we say, love. The combination of these things combined with life spent outside had their effect on Ugly.
To start with, he had only one eye, and where the others should have been was a gaping hole. He was also missing his ear on the same side, his left foot has appeared to have been badly broken at one time, and had healed at an unnatural angle, making him look like he was always turning the corner. His tail has long since been lost, leaving only the smallest stub, which he would constantly jerk and twitch. Ugly would have been a dark gray tabby striped-type, except for the sores covering his head, neck; even his shoulders with thick, yellow scabs.
Every time someone saw Ugly there was the same reaction “Thats one ugly cat!” All the children were warned not to touch him, the adults threw rocks at him, hosed him down, squirted him when he tried to come to their homes, or shut his paws in the door when he would not leave.
Ugly always had the same reaction. If you turned the hose on him, he would stand there, getting soaked until you gave up and quit. If you threw things at him, he would curl his lanky body around his feet in forgiveness. Whenever he spied children, he would come running meowing frantically and bump his head against their hands, begging for their love. If you ever picked him up he would immediately begin suckling on your shirt, earrings or what ever he could find.
One day Ugly shared his love with the neighbor’s huskies. They did not respond kindly, and Ugly was badly mauled. From my apartment I could hear his screams, and I tried to rush to his aid. By the time I got to where he was laying, it was apparent Ugly’s sad life was almost at an end.
Ugly lay in a wet circle, his back legs and lower back twisted grossly out of shape, a gaping tear in the white strip of fur that ran down his front. As I picked him up and tried to carry him home I could hear him wheezing and gasping, and I could feel him struggling. I must be hurting him terribly I thought.
Then I felt a familiar tugging, sucking sensation on my ear – Ugly, in so much pain, suffering and obviously dying was trying to suckle my ear. I pulled him closer to me, and he bumped my palm with his head. Then, he turned his one golden eye towards me. I could hear the distinct sound of purring. Even in the greatest pain that ugly battle-scarred cat was asking only for a little affection, perhaps some compassion.
At the moment I thought Ugly was the most beautiful, loving creature I had ever seen. Never once did he try to bite or scratch me, or even try to get away from me, or struggle in any way. Ugly just looked up at me completely trusting in me to relieve his pain.
Ugly died in my arms before I could get inside, but I sat and held him for a long time afterwards, thinking about how one scarred, deformed little stray could so alter my opinion about what it means to have true pureness of spirit, to love so totally and truly. Ugly taught me more about giving and compassion than a thousand books, lectures, or talk show specials ever could, and for that I will always be thankful. He had be scarred on the outside, but I was scarred on the inside, and it was time for me to move on and learn to love truly and deeply. To give my total to those I care for.
Many people want to be richer, more successful, well liked, beautiful, but for me, I will always try to be Ugly.
The author of this story is unknown. If it is a real story or not we may never know. But it does teach us a very important lesson!
Let’s always remember, when a person or an animal looks scary or ugly, it’s not always their fault – sometimes, you can wipe away that weathered surface with some love and compassion.
May every person lost to HIV and AIDS be remembered with love today, and may all of you still dealing with HIV be courageous and wonderful.
To find out more about David Patient, please visit his website:
Another year, another December, another World Aids Day.
The good thing is that I am still seeing a lot of people for pre-test counseling for HIV but the majority of those people are testing negative.
I am also experiencing far less stigma attached to people being HIV positive with a lot of people being very open and honest about their status. And generally just being OK with being positive – including my group of “positively positive” people.
That is the good news.
The bad news is that most of the people that I am seeing who are HIV positive are women. These are often women who have been infected by their husbands or partners who are openly having relationships with other women and still refusing to use condoms. More than just refusing, they are accusing the woman asking them to use condoms of having extra marital affairs, because obviously if you are insisting on using condoms, you must know that you might be carrying something. Or so they say. It constantly leaves me feeling saddened and frustrated.
For me, World Aids Day (and everyday in my life) is much more than being about HIV education and awareness but about women’s (and men’s) rights to assert themselves and be able to stand up for their rights with no fear.
Part of that, whether you are at risk of HIV or not, is that you teach people how to treat you!
If people treat you like you are not good enough or that you are not worthy, you need to take a serious look at yourself and ask yourself why you feel it necessary to be with somebody who does not respect you.
Are you not worthy of so much more than that?
My message for World Aids Day is to take a moment to really think about what you deserve – what you truly deserve – and then to take stock of the people that surround you. Do they treat you the way you think you deserve to be treated? If not, today is a good day to start doing something about it.
Take care of yourself.
Be a hero to yourself.
I dedicate this to all who have lost their lives to HIV and AIDS; to all who have been affected by it and to all who continue to soldier on and fight for injustice. It is you who are the true heroes.
23 years ago, my favourite singer died.
Freddie Mercury was well known for his amazing voice but also for his over the top, larger than life personality on stage.
You wouldn’t call him a good looking guy at all but he was magnificent. And compared to today’s high standards for the perfect look, he was much more than his looks.
They just added to his quirkiness.
Sadly, he died of AIDS in a time when there was still such a huge stigma around the illness and he kept his illness a secret until 2 days before his death. I really feel blessed that people are talking about HIV so much more and are open and comfortable with sharing their HIV status.
More than anything else, I really admired how Freddie was just himself.
He didn’t fit into any mould.
He was unique.
And that is a lesson that can be learned by all of us.
The lyrics for Innuendo say it so well:
You can be anything you want to be
Just turn yourself into anything you think that you could ever be
Be free with your tempo, be free be free
Surrender your ego – be free, be free to yourself
If there’s a God or any kind of justice under the sky
If there’s a point, if there’s a reason to live or die
If there’s an answer to the questions we feel bound to ask
Show yourself – destroy our fears – release your mask
Oh yes we’ll keep on trying
In honour of Freddie’s memory and more importantly, in honour of yourself, throw away your mask.
Stop living a life where your main objective is to please others and to make other people happy.
Stop worrying about what other people think of you or if you “fit” in or not.
You don’t fit in – nobody does!
Be proud to be you because being YOU is good enough.
Better than good enough, it is wonderful!
World HIV day… what can I say? I honour the memory of all of the amazing, special people that I have known that have lost their lives as a result of HIV.
And even more importantly to the incredible inspirational people that keep going, no matter what – who are positively positive, who teach me new things every day, who are prepared to listen to me and my views and who keep me motivated to continue working passionately where some people fear to tread.
Thank you one and all!
The wonderful Sile told me about a Bar One cake and of course I had to come up with a recipe. Not only that, but I had to get a committed group of tasters (which is not that difficult to do actually). For those of you who are unfortunate enough not to know what a Bar One is, it is a nougat and caramel filled chocolate (I guess that Mars Bar is similar?).
This is a chocolate cake with a caramel fudge layer in the middle and topped with a Bar One topping – if you live in a Bar One-less country, please come up with your own topping (and let me know what you used).
Well, bless Sile who has survived HIV for 10 years (and counting) but claims that this cake sent her straight to heaven – and I really don’t want to kill her, but this became the “killer cake”. And the woman is still crazy enough to want to sky dive with me!
- 1 cup margarine
- ½ cup cocoa
- 1 cup water
- 1 ¾ cups self raising flour
- 2 eggs
- 1 ½ cups sugar
- 200 ml milk
- 5 ml caramel essence (vanilla if you don’t keep caramel on hand like I do)
Preheat oven to 180°C
Melt margarine and then add the cocoa and water and heat until warm, set aside.
Whisk together the eggs and sugar in a bowl
Add caramel essence, milk and flour to this
Now add the cocoa/margarine mix to this mixture and mix well
Pour into a prepared pan and bake for 60 minutes
Caramel fudge filling
- 385g can of condensed milk
- 1 cup sugar
- 125g butter
- ¼ cup golden syrup
- salt flakes
Put all the ingredients (except salt) into a saucepan and mix on a low heat until the butter and sugar have melted
Bring the mixture to a boil and then turn down to a simmer and stir continuously for about 15 minutes until the caramel is darker and thick (when it feels like the caramel is resisting your stirring) – I would suggest putting on some good music to keep you dancing and entertained during all the stirring because you cannot leave it alone
Add a bit of salt to taste (you can leave this out if you really don’t like the idea of salt in caramel – for me it is perfect)
Leave to cool
- 150g Bar One (or Mars bar or some other caramel/fudge chocolate I guess)
- 100g milk chocolate (I have to say this at this point, in South Africa, we don’t get 100g chocolate slabs – they stole 10g from us and now sell 90g slabs! – sorry, personal irritation)
- 100ml cream
Melt all the ingredients together in a saucepan
Now, let’s put this baby together – once the cake is cool, cut it in half and spread the caramel layer on the bottom half and then top with the second half of cake.
Spread the topping over the cake.
Now lick all the spoons and saucepans while you wait for the topping to set.
This cake takes time and love but it is so, so worth it and not that difficult to make with a bit of patience!
Well, another World Aids Day is here and I wonder how much has changed. I can only say what I have seen from the people that I meet and work with.
I know that I am giving out less positive results – it always amuses me that it is called positive because when I give a positive result, the person generally feels anything but positive. Some labs prefer to call it reactive or non-reactive but when people see that, they always ask does that mean positive or negative.
I am not sure if that is a reflection of the general population or just the small group of people that I work with.
I see that sadly, stigma still exists – people still get overlooked for promotion or even get moved “sideways” into less demanding positions at work and most often without ever being consulted on the issue. People still get isolated by their communities and even worse, by their own families.
I know that the HIV infection rate is still way, way too high in South Africa.
I know that a lot of people are still ignorant about HIV – mostly because they believe that it will never happen to them or that they are somehow invincible. Men who still refuse to use condoms, women who will still have unprotected sex because they are too afraid to say no or stand up for their rights.
I see young adults who are promiscuous and think that it is fun and a sign of popularity to have multiple sexual partners.
I see the devastation caused by the loss of a parent, care giver and breadwinner.
And sometimes I see interesting things like the gay man who is married to a woman so that his family don’t find out that he is gay (and that is another discussion on its own), who has multiple sexual partners over the years and finds out that he has HIV at age 65 and his family still have no idea about his true identity.
But I also see survivors, I see fighters and I see activists who passionately provide a voice for those who cannot speak up.
I see women who become empowered by their HIV status to do something different with their lives.
I see men who disclose their status to their community in order to try to battle the stigma. I see people who start wellness programmes in their workplaces.
I see people that live healthy, happy and fulfilled lives not only despite, but because of their HIV status.
And then, there are the people, like David Patient, who continue to inspire me in everything that they do, and in the way that I work.
This World Aids Day, make it count.
If you don’t know your status, today is the day to find out. Today is the day to make a decision to change the way you view HIV. Today is the day to change your behaviour. Today is the day to make a difference and to make it last!