Milja Sheer is a Dutch doctor working at Canzibe hospital neaby the Mdumbi community. Here she tells us about a regular day in her life:
Summer rains...
The rains have started, summer is on the way.
I walk to the hospital, wearing my raincoat, and cloggs, leaving deep footprints in the mud...
In the corridor leading to the doctors’ consultancy rooms, many people have gathered, waiting for the doctors to see them.
Some are very ill, in wheelchairs, pale, thin, breathing heavily, coughing...I know they will surely have tuberculosis or AIDS...
Some are bored, of waiting, a staring gaze. Some are excited, talking to each other, playing with children. Some are eating, chickenfeet and necks...the cheapest meat. Some are wearing shoes, most of them bear feet, why waste your only pair of shoes in the ankle deep mud...
It is noisy, smelly, but my heart feels at ease, I love working here, I have grown to feel so at home in the hospital between those people...
In the crowd I recognise the face of a young woman, she greets me friendly, I greet her back, but have no idea where I know her from.
I make my way through the people, enter my room, hang my whitecoat over my chair, and sit down behind my desk. Then I suddenly remember: that young woman was one of the mothers staying with her child at our malnutrition centre, called ‘Nokuphila’ (=good life), some months ago.
I now remember everything clearly. She had left an impression on me for several reasons.
The first reason was because her husband visited them many times during their stay at Nokuphila...it is the only time that I had seen a man visiting his loved ones...in the Xhosa culture, the women usually look after the chilren, also when they give birth, the men will never escort their wives....they will see them again once they get home. But the husband of this young woman had visited her, and their one year old child many times.
They were a young couple, in their twenties, and had two children. All of them were HIV positive, the husband, the wife and their two children.
The other reason that I remember her was a very sad reason, I will come to that later.
The child that was at Nokuphila was one year old, a girld, a beautiful child, but far too thin and small for her age. Her name was Thandi, loved one...
Her mother, Nozukile, was a dedicated woman, she wanted to give anything to make her daughter better...
She played with her, sat hours beside her bed, tried to feed her although she had no appetite, and spend most of her time just caring for her...
Gradually Thandi picked up weight, started smiling again, regained her appetite, and became a real cheerful child.
We started preparing her for ARV’s (medication to slow down HIV).
Then one day I came to Nokuphila and found that Nozukile was not there...and neither was Thandi...
The village healthworkers told me she had become ill and was send to the paediatric ward...
When I came there, I did not find Thandi, but in the corner of the room I saw a small bed, with a baby in it, of about 6 months. Totally covered in blisters, oozing watery fluid from the red, broken skin, no normal skin left at all...
Suddenly I got a shock, I felt sick...this was indeed Thandi!!
What had happened to her? I had never seen this in my life before. Was she burned by fire? Why so many burnwounds on her?
I found Nozukile in the room nextdoor, and asked her what had happened, she cried and said nothing happened, the blisters just came like that...
Then I remembered from my dermatology lessons a syndrome in which the whole skin is ‘eaten’ by a bacteria...staphylococcal scalded skin syndrome...
This baby, with such a low immune system could not fight this bacteria, and so her skin was being totally destroyed...
Thandi was half asleep, half awake, dehydrated by all the fluidloss through her broken skin...she did not smile anymore...neither did she cry...all emotions seemed to have been burned down by this terrible infection...
There was no child left inside her...
The tears stirred behind my eyes, why God, why??
Why this innocent baby, why this suffering, why this heartache to the mother, why are so many people just killed, their bodies eaten away while they are still alive...
I could not handle it, but walked to the cupboard and started preparing things to put up a drip for Thandi, with fluid to rehydrate her, and strong antibiotics to help fight the bacteria...
I looked back to the bed in the corner...this was not the cute baby I knew, this was a monster, unrecognizable, her skin just peeling off her...her face puffy...her eyes without life...but still alive...
I don’t know how I managed to get a drip into her broken skin, but on her head there was still a brittle vein visible between her thin hair...Thank you God, at least you give me the opportunity to get this drip in and help her...
Nozukile was waiting outside the ward, I do not like mothers having to watch their child get a needle in them...when it is done, I call them, and they can console the child.
Thandi needed no consoling, she did not even feel I put that needle in...
The next day Thandi’s bed was empty. As I had expected...
Another AIDS baby had lost her struggle for life...
And now, at least half a year later, I saw Nozukile in the corridor, waiting for me...
I called her and closed the door of the room behind us.
She came to see me to show me her CD4 count results, an indicator saying how good or bad the HIV in the blood is...it was bad, her CD4 count had dropped...she should be put on ARVs.
Then suddenly I remembered I still had a picture of Thandi on my computer.
I asked her if she had any pictures of the daughter she had lost, and she said no. She would really like to have my picture of her...I told her to wait for me today, I would give her the picture of Thandi.
So in my lunchtime I went home, printed Thandi’s picture, not a good quality on my printer, but it was so cleary Thandi, with her big eyes, taken when she was in her cheerful times at Nokuphila.
I framed it, walked back to OPD, called Nozukile in my room and handed her the picture...
Nozukile was quiet...tears welled up in her eyes...’I loved her so much’...
I wanted to console her, but knew my words would never heal any of the pain of her lost child...
So I started to ask about her other child: she looked at me: ‘It also died...’
No!!!
God, how much more pain can a mother take???
Then I asked her how her husband was, he had looked so healthy and beautiful when he came to visit them at Nokuphila some months back.
She looked down and whispered: he died last week...
Here I was, sitting behind my doctors desk, having to bring the news to Nozukile that her bloodvalues had gone down, that her HIV was getting worse, and that she was in need of medication urgently to help her stay healthy and not die...
While all her loved ones had already died!!! Two children below the age of three...and her young husband...
Words fail me. God, help her, give her the strenght to carry this all....give her friends and family to love her...
But I know very well that she is alone. She is alone due to this disease. Alone without her loved ones. Alone with her stigma.
She is more lonely than I can ever imagine, because the people here do not talk about HIV and AIDS, so she will never be able to really cry out her heart, her fears, her tears...
God, please let her feel loved, by you, by anyone,
God I cannot face this loneliness...
And yet I know, and believe, that one day, her tears will be wiped away...
But God, I am not patient, I want to feel answers today...I cannot wait anymore...
The picture of Thandi is in her hands...she feels the frame, her eyes tell me it is the most beautiful gift I could give her...beautiful and painful at the same time...but I can see she treasures it. She carefully wraps it in a plastic bag, stands up, and after I tell her where she can find the ARV clinic, she leaves my room.
The door opens again, next patient. Life moves on, so fast...So fast and so much hand in hand with death...
My next patient is a happy child, with only a small bruise on the elbow, he fell while he was bringing the cows home...I give him something for pain, and a balloon, and his smile is finding a way towards trying to balance my emotions...
God, you are the God of smiles and tears....my smiles and my tears...and I believe you are there, in their smiles, in their tears...Give them your presence...today, tomorrow, always...thank you...
NB: This story is real, only the names have been changed. It is one of our many encounters with HIV and AIDS.
In our district 1 in 4 people is HIV positive...1 in 3 babies of HIV positive women also gets it, via the mother...
What we do have now, is medication to fight this disease. I am thankful for this, many people can be saved. But the first step for them is to acknowledge they have HIV. They need to be tested.
What we need here is HIV/AIDS awareness...let the people know about HIV and AIDS, let them talk about it, let them speak out their fears, their anger, their needs...
Let them find a way out of their loneliness...
They need to know what HIV is, how to prevent it. Or how to live with it...
They have to know the truth about HIV...
because they are dying,
without knowing it...
Bev Wills is a trustee of Love Is All We Need. She is closely linked to the Hope Centre. The stories below are her experience on three different visits:
First visit 2004:
My first visit to the community with Gail and Zanele was to the home of a couple perhaps in their mid thirties. The husband had full blown AIDS, this was the first time I had met anyone with AIDS, you see, to know someone with HIV is quite different to facing someone with full blown AIDS.
We arrived at their home which was made of mud walls, and a corrugated iron roof. Gail pointed out that the seven mounds of earth in their front garden were not merely earth mounds, but their family was buried there, who had all died of AIDS related illnesses, seven of them, in the last year.
We entered the home, which consisted of two rooms. We were welcomed by the woman of the home with a wide smile and a warm Zulu welcome, I noticed how clean the room was, I also noticed the back wall of the room was half eroded from all the recent rains they had had. I was then introduced her husband, lying on a bed in the corner, the room was dimly lit and when I was introduced to him he slowly brought himself up onto his elbows and extended his hand, and gave me a warm smile, and thanked me for visiting them. His body was so terribly thin, all his bones showing through, his face drawn, and yet he smiled widely. I stood quietly whilst Gail did her medical checks and Zanele gave the woman frozen soup packages and checked on how things were. For me, watching this, time froze for a moment, for this was the real face of AIDS, so much pain, so little hope, unyet from the couple, pride, warmth and love. I quietly slipped out of the room, I couldn’t show my upset in front of these people. I stood in their front garden and cried next to a tree for some time. The man died the following week. This was three years ago, and when I was in the community in January of this year, I asked after his wife, she too has died, I cried again.
Second visit 2004:
Our next visit was to a family where the father had died of AIDS. The mother was on her sick bed and the grandmother lived with them, but was old and quite frail, leaving the daughter of about eight years old to care for the home. We walked across a dusty front yard to a small mud walled, corrugated iron roof, quite dilapidated, yet impeccably clean home, and were welcomed by the smiling grandmother and a warm and friendly daughter.
Gail and Zanele caught up with them on how things were before the girl led us into the bedroom where her mother was lying on a bed. Again I noticed how clean and tidy the small room was, and how her mother had made the effort of putting on a pretty floral dress for our visit. I noticed how frail and thin the woman was, and yet she was so excited as she had improved and felt so much better since Gail and Zanele visited two weeks before, thanks to their food and medication, and their love. Again I received such a warm and polite welcome from her, thanking me for taking time to visit her. She explained how proud she was of her daughter, how well she looked after her, and how she wanted her to go on to great things in her life. It struck me how positive this woman was in the face of a world seeming to be all against her, she saw hope for her daughter. She felt safe knowing that when she died, Gail and Zanele would still visit and care for her daughter.
At the end of our visit, we stepped into the warm African sun, with the grandmother and the daughter smiling and waving us goodbye, the children from the neighborhood were running alongside chatting and laughing. I felt humbled for in this place of so much pain, illness and loss, I felt warmth and love and hope from these people.
Visit in December 2006:
I had the privilege of joining Zanele and the team from the Hope Centre on their annual Christmas present and food parcel drop off. Every year toys and food parcels are donated by businesses and people in the town of Pietermaritzburg , the Hope Centre package them all individually to suit all the homes in the community which are supported.
We did five trips from the centre to the Sweet Waters community that day. Each trip is approximately twenty five kilometers each way. It took us the whole day, and it was an honour and privilege to be part of it.
On our last round we stopped at a small one room, mud walls and corrugated iron roof home, the home of a woman who had lost her husband and her three children because of AIDS. To get to her home we had to walk and slide down a small narrow bush track. On arrival found the huse empty. The lob sided front door was closed but not locked, as it had no lock. Zanele was puzzled and concerned that she was not there, as on their visit the week before the woman was frail and weak, she too has AIDS. Zanele chose not to leave the parcel in her home as it may get stolen, and the woman desperately needed the food. We decided to do the rest of the drop off then come back.
About one kilometer away, whilst driving on a narrow, overgrown dirt track, we came across the woman, sitting under a tree on the side of the road. Zanele got out of the vehicle and asked her what she was doing there. She replied that she had run out of water two days ago, and was walking to the well to get some more. It had taken her the whole morning to get this far, and she wasn’t sure she would make it back. You see she had to do it, as there was no one else to help her.
Whilst we spoke to her two men she knew passed. Zanele spoke to them and organised to get her water, and also to get her and her parcel home. There was no sign of pity, she was delighted with her parcel, delighted she had met us, and happy to have someone help her home. She too has died since.