Charlotte's Web

Blogging my world since 2006


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The Gifts of the Body

People who are dying are not statistics. People who are dying are loved ones; parents and children, family and friends. People who are dying have bodies, dying human bodies with needs identical to the needs of those of us with healthy bodies. We understand so much about AIDS now – how it transmits, how the virus cruelly mutates, how it takes over the immune system, how drugs can help, how if they come too late, they can’t. What very few of us understand, unless we are medical personnel or close to someone who is dying, is how people die. We understand that the body slowly gives up and that the basic functions fail, but we don’t understand how that feels. We don’t understand how hard it is to have our needs met when we are dying.

The Gifts of the Body is a small, spare book written from the perspective of a home-care worker who visits people with AIDS in their homes, and who helps them in their day-to-day care as they are dying. The unnamed narrator describes the basic care she gives – washing someone, making someone a meal, creaming someone’s sore-covered body with salve. She does not give you the individual stories, you do not know how or why people became infected, but she takes you into their bedrooms and shows you how people sustain life in the face of death. In doing so, she gives you their humanity.

In the chapter The Gift of Hunger, the narrator visits Connie who has received some Vermont maple syrup as a gift from her daughter. It is a symbolic gift of happier times, but Connie is desperate to eat it, so the narrator makes her pancakes to have with the syrup. Connie is so hungry that she asks her to make her an egg on the side too. After four painstaking bites, she can’t eat any more, but she is still hungry so she asks for some oatmeal. Connie manages one agonising mouthful of oatmeal before her body revolts and she must expel the food. The simple tragedy is that Connie is dying to eat. She is desperate for the taste, the flavours, the nourishing memories that food brings, but her body cannot tolerate it.

Another chapter I found moving was The Gift of Skin, in which the narrator describes bathing someone. It is so simple, and so beautiful:

I squeezed the cloth under the water then pulled it up his forearm to his elbow.

He took a deep breath, “Oh, that feels so nice.”

I cupped water in my hands and poured it down his arm. I washed his elbows and arms and toweled them dry. I washed the hollows of his armpits and his ribs. I washed his back and stomach and shoulders. When the water began to cool I filled the pan again with fresh warm waters and fresh clean oil. I did his neck and face. I washed his forehead and eyelids and around his beard and mouth. The air began to smell like oil, like mint or eucalyptus.

I sat on the floor and washed his feet. I poured the water over them.

He looked down at me. He touched my head. His face was full of kindness. “Thank you,” he said.

Other chapters include The Gift of Tears, when tear ducts fail and someone cannot cry no matter how much they want to; The Gift of Speech, when words fail and a person is too weak to talk; and The Gift of Sweat when a simple walk down the street to the bakery precipitates a visit to hospital. They are written without sentimentality, and yet they tore at my heart, because eating, crying, talking and walking are basic functions which I take for granted but which are, in fact, gifts not to be taken lightly.

The Gifts of the Body is the best book about AIDS I have ever read. The author, Rebecca Brown, is a former home-care worker and her compassion for the dying and unstinting generosity in meeting people’s needs is astonishing. It is not entirely clear to me if this is a work of fiction or non-fiction, but in the reading it begins not to matter. It just a book about one person helping others. The narrator sees people for who they are and she recognises what they need. It is a book about empathy.

On 1 December, World AIDS Day, and every day, empathy is what we need to have. After all, we are all human.

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Further reading for World AIDS Day:

Natalian’s moving tribute to her manager J, who died of “TB” in Durban a few years ago.

Sharon from The Not So Secret Life of Us, writes about volunteering with AIDS babies at Nazareth House in Cape Town.

Julie Belle’s message of love.

Christopher’s review of the movie Longtime Companion.

John Self’s review of Adam Mars-Jones’ Monopolies of Loss, a book of short stories about AIDS.

Atherton Bartelby’s tribute to a beloved friend.

* If you have a World AIDS Day post, please let me know and I will link to it here.


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RIP, Tony Shelembe (A 30th Story of AIDS)

Today I am honoured to have my first-ever guest post. Please meet my new-found friend Daniela Gennrich. Daniela worked closely with Tony Shelembe, and nursed him at her home along with his fiance, Pretty, during his last hours. In this article, which was published on Saturday, 1 December in The Natal Witness, Daniela interviews people who knew Tony well, including his mother, his fiance and his daughter.

A True South African Hero
by Daniela Gennrich

The sister at the local clinic looks up wearily, and surveys the queue snaking out of the main door onto the road. It’s going to be another long day…

“Next…” A young man approaches. “Sawubona Sister”.
Yebo Boetie. What’s the problem?”

The somewhat sickly looking man explains that he has a persistent headache, and his abdomen is distended, or swollen. The sister puts on her stethoscope and listens briefly to his chest, takes his pulse and blood pressure, and sends him off with a small plastic packet with the word ‘Painadol’ written on it.

“OK – Next…”

A tired, careless moment, a missed opportunity to diagnose a life-threatening condition…

Just over a month later, Tony Shelembe became one of the death statistics for November 2007, one of the perhaps 1800 who will have died before the month is out.

But who was this man?

As I sat in his house the other day surrounded by his family and friends, the rain pelting down on the corrugated iron roof, I noticed a faded photo of a 14-year-old Tony, and asked people what they remembered about him. This is some of what I heard.

A grandson:
“I cannot eat when I think of my little grandson. Who is going to take of care of me when I am sick? Who is going to look after the cows and the goats for me? I should have gone before you. Who is going to bury me now?”

A son:
“I am Tony’s mother. Tony was very helpful, at home and in the community. He loved his children very much, they were very important to him, but all children were important to him. This is a very great loss. Everyone will miss him.”

“He was not talkative and didn’t fight. He loved to braai meat outside on a Sunday. He was often making jokes. One day when he was 14 and I still had a car, he just took it and drove away. But he was humble and just said ‘I am sorry, dad’. He could not resist driving!”

A brother:
“He was always there for me when we were growing up.”

A father:
“My dad was so kind. He did all the things I wanted. The best part was when he used to take us kids to go swim in the river. He bought me a bike for Christmas.”

An athlete and a role model:
“My dad was a marathon runner. He got three Comrades medals, and eight others for running. He won three gold medals for his soccer team.”

A community leader:
“He was a good leader. I always remember Tony with his smile. I remember the work he has done with us in the community since 2000. I remember when the committee was divided, and some wanted to follow Sthembile and others wanted to follow Prudence. And Tony said “No, this thing is too big, we have to continue the work, however scary it is”. And we have continued to work until now. The stigma is less, and more people come forward for help. Tony left us in the middle, but we know that God is there…”

“He was like a son to me, chatting about his future and where he wanted to go. He wanted to be an NGO director and quietly went about making it happen. Working day to day to make a difference, it was never about the money or the status, always about how things would change.”

A caregiver:
“He was not like other men. He helped orphans talk about their sadness, helped gogos looking after their grandchildren. How many men have that gift to give children?” (A community member)

“Tony used to come straight away when we called for help. He used to drive us to hospital when we were sick. But he was not like a taxi driver. He used to talk to us to help us not to be afraid.” (A gogo in the community)

“He helped me to take my medication correctly – what will I do now?” (Young woman in the community)

A friend:
“I remember his dedication. His respect for the young and the old, his smile, his tiny body, his funny caps and his good heart.”

“He was many things in one. He was there for everyone, mothers, children, friends. Whatever he put his mind to, it became possible. Even though things were a struggle he never accepted failure and always found a way forward. He never lost hope.”

“He was not afraid to confront you when things went wrong, to honestly work things out.”

A lover and a husband-to-be:
“I fell in love with Tony on the 9th August 2004, when we were both doing home based care training in Howick. One day he took me to uMngeni River and he told me he wanted to marry me. I did not agree. He begged me until I finally agreed. He has just finished paying my mother lobola (bride price) for me. We have started wedding preparations. Next month we were going to collect our rings at the jewellery shop, and we were paying off a bedroom suite.

Then he got sick. But he never gave up hope. I remember one day when he was very sick, he tried to get up and go to work. He loved his job.

He also loved talking with me about our future and our babies. I miss his smile. When he called my name, he said ‘love’. Everywhere I go he still goes with me. I wish someone could bring him back to me.”

His vision for his community?
I remember he said: “ This community is going to have a vibrant economy and there will be no more unemployment. And most of all, there will be no HIV stigma and we will be free. If I die, please don’t let anyone say it was nthakathi (witchcraft). Tell them I was just sick.”

The Hilton Valley Committee chair has committed to continue working to fulfil his vision. Even though they have very little funding, they have vision and they have hope.

So, who was this man, passed over so easily by the Health System?

The answer is best summed up in the words of his daughter Luyanda, as I was bringing her back from shopping yesterday, when she saw Tony’s cousin in the distance: “Look, look! Daddy IS here! … Oh no, sorry – I forgot ….”

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Tony’s memorial service was today. My mother baked scones and with Daniela, collected Tony’s family and drove them to the community hall where the service took place. She said many people spoke, and she was deeply moved by the beautiful singing of African hymns, where one voice begins and then others join in in parallel harmonies. She met all the people who loved Tony and who mourn him so deeply.

My Toni was also relieved to hear that Tony’s community are going to try to help Sambeka, who lives 10 kilometres away and who was one of the many people with AIDS that Tony was helping. Community members will drive her to the clinic so that she and her baby son get the treatment they so desperately need.

I am gaining faith in the amazing networks built by ordinary people who find the compassion in their hearts to help each other. But it is nevertheless a tragedy that such a wonderful man had to die because the health system was too overwhelmed, overworked and weak to save his life.


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World AIDS Day

Today is World AIDS Day, and Avert is the international charity that is leading the campaign. According to their website,

The WAC’s slogan for their work is “Stop AIDS: Keep the Promise”. This is an appeal to governments, policy makers and regional health authorities to ensure that they meet the many targets that have been set in the fight against HIV and AIDS, and especially the promise of universal access to HIV treatment, care, support and prevention services by 2010. This campaign will run until 2010, with a related theme chosen for World AIDS Day each year.

The 2007 theme, “leadership”, highlights the need for innovation, vision and perseverance in the face of the AIDS challenge. The campaign calls on all sectors of society such as families, communities and civil society organisations – rather than just governments – to take the initiative and provide leadership on AIDS.

If you would like to do something right now, then click the button on the right and join the campaign to stop AIDS in children. You can find out more about the campaign by watching this YouTube video.

Right now across South Africa, there’s another campaign called 16 Days to End Gender Violence. My home town’s local newspaper, The Witness, is running a series of stories in tandem with this campaign focusing on the good men out there. It celebrates men who are working to bring about healing and hope, who have life-giving relationships with their families and the rest of society. One of the stories is about Tony Shelembe, who died of AIDS-related TB of the liver in November, and whom I wrote about here. I was able to help Daniela and her team prepare the stories for publication by running my editor’s eye over them, a task I did gladly.

I am learning that there are ways to help without necessarily giving money. As I talked to a friend yesterday, I began to think that there are ways we can all help by just sharing our time and our expertise. A psychologist could donate 5% of her time to counselling children bereaved by AIDS, someone with drama training could start an informal children’s theatre, someone who has experience with setting up a business could advise women on micro-businesses, someone who sews could make clothes, others of us could donate our children’s discarded toys to children who have nothing.

This year’s World AIDS Day focuses on leadership, and we hope that the leaders in South Africa will realise how urgent the AIDS epidemic is and decide to show compassion for their people. However, we can each be innovators in our own small ways. We don’t have to run a community organisation or a charity, we don’t have to donate huge sums of money, we just need to open our hearts and examine how we can help.

I am a writer. And so I write.