As I reflect this month – December being HIV/AIDS awareness month – I am sharing a piece I wrote in 2010, during the time I was working in the HIV/AIDS antiretroviral (ARV) rollout field during my early years in palliative care.

One of the first ARV rollout sites in the Eastern Cape was at Settler’s Hospital in Makhanda, a secondary-level hospital an hour’s drive from my home. I accepted a job to work in the ARV clinic and the newly opened in-patient palliative care unit while I completed my master’s degree. Those early days of the ARV Rollout programme in South Africa were heady days to practice medicine. I grew up medically in the eighties. I have the lecture notes from my third-year microbiology class – a few short paragraphs referring to the virus identified in Paris a scant two and a half years previously. I was about as prepared to work in the ARV arena as Peppa Pig would be to do a heart transplant. 

My work in the Settler’s Hospital unit was measured in sorrow and miracles. The Palliative Care Unit (PCU) cared for as many patients with HIV related illnesses as those with end-stage malignant disease, or other life-limiting conditions.

My colleague and I began calling our morning coffee break in the ARV clinic therapy. We guarded those fifteen minutes – our time to debrief, to chat through a problem, or distract ourselves with talk of our children – as we found our way through the emerging practice of ARV treatment and caring for people living with HIV/AIDS. Some days, the dying lay heavy all around us. Some days, our calls to colleagues at academic hospitals asking for help ended with them saying, “We really don’t know what to advise you in this case. You have to go with your best clinical judgement.”

The clinical team had an unspoken agreement: we could focus only on the person in front of us in that moment. We knew if we focused on the big picture, we would be paralysed and of no use to anyone. We would do our best for the one person we were with in that moment. And then we would move on to the next one.

Those days, and my patient teachers, taught me a new language. There is no dictionary for dying, not like the ancient, dog-eared, second-hand medical dictionary on my bookshelf with its universal dialect, serving me so well in other arenas. 

One morning, a young man announced himself as he sat down with me. “Doctor, I feel as fresh as new bread.” He looked strong and fit, and I hardly remembered the emaciated patient I met a year previously. Slowly, the face of the pandemic in our town changed.

Being part of the early days of the ARV Rollout in South Africa remains one of the highlights of my professional life. Sick people got better, and healthy HIV positive mothers lived to bring up their HIV negative children. People we admitted to the hospital, weighing 35 kilograms, gained weight and went back to work. My work in HIV medicine helped me find space in my life to meet death, to learn it was sometimes possible to defy it, and to learn how to be brave when I could not save someone. Those years in the ARV clinic and the PCU, for all I learned academically, saturated me with loss and grief. I watched how grief rested on people’s bodies, how it made them silent and bent. I saw how, sometimes, the capacity to manage grief can grow finite. Grief can render us numb and unable – health care workers too. Our ability to manage grief is not like our ability to experience love. Even as love and grief exist together in the human condition, love is elastic, it expands. It is self-fulfilling. Grief can paralyse. Grief can overwhelm. I didn’t know what to say to people whose griefs had grown too big for them. 

In July 2010, I attended the exhibition of the Keiskamma Guernica at the Grahamstown Arts Festival. I’d been working in the HIV field for almost five years. I walked around the installation, returning again and again to a wall of white pillowcases.

The Keiskamma Art Project has its home not too far from where I live. It evolved to support a community devastated by the HIV/AIDS pandemic and has grown over the years into a creative expression of living history. Their first major project, the Keiskamma Tapestry, is their community interpretation of the Bayou Tapestry. It chronicles the history of the people who lived in the Keiskamma Valley and is on permanent display at the Union Buildings in Pretoria. The Keiskamma Guernica, is based on Picasso’s similarly themed work, commemorates the people in the community who died of HIV related causes. 

I stopped again before the rows of pillowcases
Each of these pillowcases is a life.
Each of these pillowcases was a person who was loved, and who loved.
How young are all these people
What about mothers who have lost their children?
What about children who have lost their mothers?

I thought of each of the patients, their lives written down on pages and slipped between the layers of white fabric, and imagined how they died. All the terrible things one tiny virus can do to a human body. How much a body can withstand. How a body can keep going in the face of a devastated immune system.

I stood all alone in the gallery with all the ended lives. I stood in front of sorrow. I cried for the dead, and I cried for me. I cried for me, who promised to first do no harm, and alleviate suffering. Who promised not to hasten death, or delay it when there is no possible return to previous function. I cried for my learning to be a healer to the dying. I cried for a profession, a generation of health care workers in Sub-Saharan Africa who lived and worked through this pandemic. 

The crosses on a battlefield are markers in the ground until you think about the lives ended in those places. What was that for? What did all that mean in the end? If one thinks about the lives lost since the first HIV case reported in San Francisco in the early 1980’s, it defies imagination. It’s the 20^th and 21^st centuries we are talking about; people can live till they’re over a hundred. The weight of souls surrounded me that morning in Grahamstown, now Makhanda, looking at the lyrical tapestry. If I thought about all those lives, all those people who died, I could not breathe. But if I didn’t think about all those lives, I could not breathe either. I would stop breathing, stop feeling, or be overwhelmed with feeling; either way, I seemed doomed. I walked towards the morning sunlight shining through the door. Our team in the ARV clinic was right: it was about that one person, that one moment, and how I could be present, be focused, be kind, and listen. How could I alleviate suffering? Eat an elephant one mouthful at a time, build a wall one brick at a time, run a marathon one step at a time, look after the dying one life at a time. 

20 years later South Africa has the largest ARV programme in the world, looking after in excess of 5.8 million people. Mortality number have fallen from around 230 000 to around 49 000, and new infection rates have dropped by approximately 70%. Please see the attached info sheet for references.

– Barbara