Rev Christo Greyling tells the story of his life, HIV-diagnosis and struggle to overcome all the obstacles associated with this disease. However, his is not a story of illness, misery and death, but one of hope, friendship and love.
Christo is one of 15 proud people from the African continent telling their stories of living positively with, and being deeply affected by, HIV in the book Whisper not.
Here's an extract from Whisper not, detailing Christo's story:
For Mia - Christo Greyling
Who I am
I was born in Germiston, South Africa, and I am 46. I have received transfusions of blood products for haemophilia since I was born. I have lived with HIV for 23 years since discovering I was HIV positive while studying to be a reverend at the University of Stellenbosch. After serious reflection, my wife, who is HIV negative, and I decided to have children, and we have been blessed with two precious girls, who are also HIV negative. I currently work as the Director for HIV and Infectious Diseases for World Vision International, based in the Netherlands.
Why I am telling my story
My story started many years ago when HIV-related stigma was still a death sentence. Since then new hope has arrived, and stigma levels have changed, but I realise that it remains a devastating blow to learn that you are HIV positive. I trust that my journey of living with and beyond HIV will challenge you, but also provide you with much hope for your future! I wish to encourage you too to live with an unrestricted horizon.
You are doing your own thing as always – creating something out of anything you can find.
It is five months after your fifth birthday. You are so busy cutting and glueing two wine boxes together that you don’t even notice me. I smile as you sing in your unique jazzy style in nearperfect Dutch:
“Weet je dat de Vader je kent,
Weet je dat je van waarde bent,
Weet je dat je een parel bent,
Een parel in God’s hand?”
(“Do you know that God knows you,
Do you know that you are of value,
Do you know that you are a pearl
– a pearl in God’s hand?”)
If you just knew – if you could just understand how true that is, Mia. You, Anika and Liesel – precious!
Mia, I do not know when you will read this. It might be at a time when you need to feel loved or when you need to hear that you are loved and belong: This is my story. This is your story. This is who we are.
Way beyond my student world
In February 1982, at the age of 17, I went to study at the University of Stellenbosch to become a reverend in the Dutch Reformed Church. I started as a wide-eyed first year student with a Bachelor's degree in Arts, and then went on to the theological seminary at the end of Dorp Street.
1982: Die Akkers student serenade group. Christo is on the top right.
Student life in Stellenbosch was bliss. I was involved in every possible part of campus life, including the university choir, a male ensemble group, camps and, of course, a bit of studying.
Late winter and early spring were the best times. They were the season of picnics with Liesel in Jonkershoek on the old suspension bridge, where we both discovered that the great friendship we had, after doing so many things together over a period of four years, started to be more than friendship. Under the great old oak trees, we claimed for ourselves what David said in Psalm 16: "The boundary lines have fallen for me in pleasant places; surely I have a delightful inheritance."
I could not wait for the heavy Cape rains to stop so I could jump into some inner tubes and race down the white waters of the Eersterivier in full flood with my friends. Friday afternoons after class were also the time for wine tastings in the Winelands of the Boland. Life beckoned. Liesel and I began to talk of getting engaged.
At that time, I was starting to attend the Haemophilia Clinic at Groote Schuur Hospital. Jakes, my older brother who also lives with haemophilia, convinced me that I would get better treatment there than at Tygerberg Hospital, where we had both been treated for the last 15 years.
Haemophilia is a genetic blood disorder that prevents my blood from clotting. This leads to frequent internal bleeding and, as a result, I have to give myself regular transfusions of the clotting factor concentrated from blood donors' blood. I have to get these infusions at least once every two weeks.
Moving to Groote Schuur meant new forms, a new test, new people, new doctors and a 45-minute drive to the big white hospital at the foot of Table Mountain. Groote Schuur was the hospital of great new beginnings, where Dr Chris Barnard gave many people in the world new hope after the first heart transplant in 1967.
15 September 1987 was a cold and wet day. It was the second time in two days that I was driving back to Groote Schuur in my 1970 Volkswagen Beetle. The receptionist had said: "Dr Bird asked whether it would be possible for you to come back tomorrow again. There is something more he needs to talk to you about."
I had no idea what this could be. It was not Haemophilia Clinic day. I was immediately asked to go to Dr Bird's consultation room. On his desk was my new folder with a yellow sticker on it saying 'Danger of Infection'. I thought: They must have made a mistake or it must be someone else’s file. Haemophilia is not infectious!
This all changed in a matter of seconds. Dr Bird said: "I could not tell you this yesterday. One of the routine tests we did to open your folder was an HIV test. This might come as a shock to you, but your test came back positive. Do you know what that means?"
Of course I knew what HIV and AIDS were:
During the past two years, we had all joked about Rock Hudson and Liberace. Jakes had told me about the new disease that affected the 3 Hs – Haemophiliacs, Homosexuals and people from Haiti. But what was the chance of this happening to any of us in South Africa? I was too busy being a student. Too busy living – there was no chance to even consider this as a possibility for myself. But here it was.
"I prepared you a pack of materials. You might want to read them in your own time."
Arthur Bird's voice broke through the haze in my head. He was explaining how HIV works, and I was asking every possible question I could think of: "What about treatment? How long will I live?"
Dr Bird responded: "Perhaps a few months, perhaps a few years... But you must prepare yourself: you could fall ill at any time. I suggest you keep this to yourself. People are so misinformed and judgemental that you might experience unnecessary rejection. Don't tell anyone. If you want to, you can speak with Dr Spracklen. He is a haemophiliac himself and is working on HIV at Somerset Hospital."
Millions of questions milled in my head, such as: "What about getting married and having children?"
In his gentle way, Dr Bird explained what I sensed then would be impossible – no chance.
At home with Liesel (second from right) and the friends I disclosed to back in 1987.
To read the rest of Christo's story, order your copy of Whisper not here.
Each story in Whisper not ends with a set of learning tools and reader aids. The idea is to use the lessons and questions for discussion in awareness workshops or in support groups. Topics include dealing with abuse, stigma and relationships, as well as psychological and treatment issues.
Here are lessons and questions from Christo's story:
CHRISTO’S LESSONS AND QUESTIONS FOR DISCUSSION
1. Read as much as you can to make sure you know as much about HIV as your doctor – in this way you remain in control of your own body and destiny.
2. Trusting anyone with your HIV status is a risk, so it is your decision when to disclose or who to disclose to.
3. Do not deprive yourself of the support you need – the people you love may surprise you with the way they support you and accept you for who you are.
4. I chose to challenge people who make different value judgements on how we contract HIV, for example, through contaminated blood or through sex.
5. Never take a drug holiday – poor adherence or interrupting your ARV treatment can lead to drug resistance and losing future options for treatment.
6. I drew on my faith to survive stony paths and fulfil my God-given potential.
7. Living positively is about a positive mindset and making life choices: my wife and I made a rational decision to have children after getting the best advice, based on the latest scientific facts.
1. How much HIV-related stigma is there in your social and working circles? And what is the best way of engaging with people and challenging them?
2. When you hear someone has tested HIV positive, do you ask how they got infected or focus on the best way of giving support?
3. How can you draw strength at moments when you are vulnerable? And have you been able to draw on your faith to help you get through tough times?
4. Have you been able to be open with your family and in-laws about personal issues like living with HIV or deciding to have children?
5. Were you aware that it was possible for couples who are sero-different (when one person is HIV positive and the other HIV negative) to safely have children?
Whisper not at a glance
Fifteen people share their personal experiences of love, loss, survival and hope, speaking out to silence the whispers, the gossip and the rumours that often characterise life in the age of HIV.
The diverse range of authors - from the DRC, Malawi, Lesotho, Zimbabwe and South Africa - in Whisper not transcends nationality, ethnic origin, language, religion, age, sex, gender and sexual orientation. These stories reflect the capacity of the human spirit to overcome adversity and to embrace the essence of living: to touch you, to get you to laugh and to make you cry – all the things we felt as we wrote our stories.
The voices of our authors portray living with and being affected by HIV as one part of life and love. By no longer whispering about HIV and AIDS, they show you that you can live your life healthily, fully and positively beyond HIV. They encourage you to reflect on your own life as you read the Lessons and questions for discussion at the end of each story. They invite you to write your own story, guided by the From scrap page to story: our writing tips section at the back of Whisper not.
Visit www.openlypositive.com for more information.