Sunday Times (Johannesburg) - October 21, 2007

Ed left his parents' house while he was in matric. I saw him once at his dad's house at Christmas, after which I didn't see him for many years.

As 2006 drew to an end and everybody was preparing for the holidays, I was struggling with the thought that I had to look for him.

But I didn't know where to start. I learnt that Ed was sick, infected with HIV. " All the more reason for you to look for him," I told myself.

I phoned his mom, who gave me a cellphone number, and I made arrangements to see him. When I first laid eyes on him, I had no words. I did not know the person in front of me. My heart was in a million pieces and I couldn't take my eyes off him.

He was at a friend's flat. His friend's husband arrived and got ery agitated with us being there. So we said our goodbyes and went down to the car.

Then I had the task of getting Ed to his mom or his dad's place. His parents were divorced and this had a lot to do with him leaving the house to be on his own.

Standing next to the car, I spoke to his mom over the phone and the more I tried to tell her he needed her, the more she told me no.

I started to cry. Ed asked me not to cry, he said it would all work out fine. I wished I could believe him.

I phoned his grandparents. "Nope," said grandpa. "His parents are alive and well, what the hell is wrong with them?"

My pa (his grandfather) felt that they were too old to know much about the illness, let alone how to care for a person living with it.

I started to panic because the night was drawing closer. I took Ed to the Nazareth Clinic. While we were driving, I was trying to figure out what to do next and praying very hard that the hospice people would take him in again.

Ed had been staying at this place and was happy there but then, in his own words, he "got the devil" in him and he left in the middle of the night. So when I rocked up there with him the staff were reluctant to take him back.

There I was at the end of the road. I asked God: "Tell me again, why did I have to look for him?"

I tried his mom again. I ran out of air time and change for the phone booth and I prayed that she would phone me back.

No such luck. Nobody wanted him and everything that he had was somewhere in Langa.

I asked Ed: "Tell me what I must do next."

He said: "Take me to my dad."

I tried to keep the fact from him that his mother didn't want to help him. But he got the message loud and clear. I decided to take him to his dad. But I had my mind made up that if he showed the child the door, I would take both Ed's parents to court for abandonment.

We arrived at his father's place, and the look on his father's face was one of shock and disbelief.

His stepmom said: "Hello Ed, come here and give me a hug." That was the first kind gesture he had received from anybody that day. They decided that Ed would stay with them.

When Ed's mom found out that he was HIV-positive, she went for counselling and was told how to take care of him. She went to all that trouble just to decide not to take him in, after all - her own flesh and blood. I am too stupid to understand that.

Ed was working in Cape Town and attended a clinic in Kraaifontein. I visited as often as possible. One weekend he walked out of the house. His dad found him at his mom's. What happened there only God knows, but when he came back he wasn't the same. He didn't speak for three days and didn't even get out of bed. He just lay there. His soul was damaged. He asked me to take care of him and I promised I would.

As a family we are close, and at one of our gatherings we decided it was time for his mom to visit him. I phoned her. She promised to be home in the next half an hour. Grandma and pa went to the house but she wasn't at home.

That night, when they arrived home in Ceres, my pa phoned her. What he told her we do not know but she came to visit her son.

Then the truth came out. Her husband didn't want to visit Ed and the family. Ed's dad offered to fetch and take her home for the sake of the child. Things worked out eventually and she came to see him regularly. But by this time his will to live had left him and everything just went steadily downhill from there.

Very late one evening his dad phoned me. Ed needed to go to the hospital again. I phoned the ambulance. They never arrived. Maybe they went to look for Ed in Hollywood or somewhere. The police responded and took him to the hospital.

I had many conversations with Ed and I couldn't help feeling that he was not at peace - not with the illness and not with his life.

On many nights I went home and cried. I was so mad at this illness for taking over this beautiful young man's life. At the age of 27, he was still a baby in my books. I loved him as if he were my own son. My doctor played a very significant role at that time. Whenever things went wrong with Ed, I could always pick the phone up and call doc.

On March 19, Ed was to be taken to a hospice. The bed sores had taken their toll on his body and when I had to change his nappy, I tried not to let him know how horrible it looked.

We tried to make him as comfortable as possible. But most of all, we let him know that we loved him with all our hearts.

One day I walked into his room and I cracked. I told my brother I was leaving, I couldn't look at him anymore. Then I remembered the promise I made to him.

I got a grip on myself and started the drill again - the changing of bedding, his supper, his teeth. We did all of that in the name of love.

Ed and his dad had a lot of time alone and they started to get to know each other again. Ed ended up depending upon the very person he had always been told was so horrible. Yet the person he thought was so loving and kind abandoned him.

God works in mysterious ways. I am glad I went to look for Ed and even more glad that God gave me a chance to be at Ed's bedside. To do for him, in my own simple way, the things that I could.

His so-called friends that he partied with, had unprotected sex with, used drugs with - they slammed their doors in Ed's face when he went looking for help, including the person who infected him. Not one person phoned him or came looking for him when he was lying helpless in bed.

Ed suffered a lot. I never thought that this illness would come knocking at our door. It was not a nice experience.

Ed died on March 18 2007 at 5.45am. A young talented person was no more. God Bless you, Ed.

***

Tell us your story ...

* Everyone Knows Someone is a Sunday Times campaign aimed at encouraging people to know their HIV status - and at destigmatising the infection.

We would like to publish the personal experiences (and, where the writer feels comfortable, photos) of South Africans living with HIV or caring for loved ones with the virus. You can e-mail your story to everyoneknows@sundaytimes.co.za or fax it to 011-280-5151.

# Clinical psychologists Khumo Seopela and Kgamadi Kometsi offer HIV counselling free of charge every Saturday morning. Counselling is offered between 9am and noon at 4 Biermann Avenue, Rosebank, Johannesburg.

To book, fax 011-280-5151 or e-mail counselling@sundaytimes.co.za. Bookings are taken on a first-come, first-served basis.

The sessions will take place in private.

071021
ST071010