Johannesburg to Edinburgh: A nurse's story In the early 1980’s I was a nurse in Johannesburg, a city in the grip of apartheid. I worked in haematology where they were beginning to see something very scary emerge. Patient after patient was being admitted with horrifying symptoms which didn’t immediately seem to make sense. Firstly, patients would be admitted to a general medical ward with severe pneumonia, and then the oncologists would get involved as huge fungating sores would appear on their yellowing, paper-thin skin. Then the haematologists were summoned – something wasn’t right with the blood test results. Some patients were positive for Hepatitis but some weren’t. Something wasn’t adding up and then the whispering began. Was this the AIDS thing we were beginning to hear about in hushed conversations? Was Kaposi’s sarcoma the first infectious cancer? We weren’t even talking about HIV at that stage. Our patients didn’t always seem to have that much in common. Some were old, some were young. Some were professionals, some were university students. Some had wives and children, some arrived alone. All were men. All were ashamed and most were silent. All of them were terrified and all of them were dying. There was a lot of blame. When the first patient that I was aware of was officially given an AIDS diagnosis, everything changed. Patients were immediately placed in isolation. To be barrier nursed. Each room had its own bathroom and a small ante room where we put red plastic aprons, masks, double gloves and arm protectors over our uniforms before entering their rooms. All furniture was removed, leaving only the bed, which was pulled out away from the wall. We were told to touch nothing that wasn’t essential. Meals came in individual cardboard boxes with paper plates and plastic cutlery and were placed in the anteroom and when we had time, we ‘gowned up’ and placed a cardboard tray at the end of the bed and left. Sometime later, again, when time permitted, the tray was removed and the tray and its contents were placed into a yellow biohazard bag for incineration. Many of these trays were removed completely untouched but I don’t remember ever specifically asking a patient about their appetite or their pain. I do remember that some of the drugs that were being used back then caused horrific side effects and excruciating agonies must have been endured by so many. The simple act of straightening a crumpled sheet or turning a pillow to the cold side was 'not to be done' by the white nurses, instead the linen was changed daily by a team of black cleaners. Separation and unfairness. Yellow and black biohazard tape was placed around the doors. No visitors were allowed. Nothing was allowed to be brought into the rooms. No books or magazines, no radios, no televisions. I hated those rooms. Already stiflingly hot in the middle of an African summer, the addition of the protective clothing made moving around clumsy and graceless. Stumbling around these small silent darkened spaces, encased in plastic, sweat dripping into your eyes, trying to stay as far away as possible from the bed and who was occupying it, was literally the stuff of nightmares. We were told not to engage the patient. That was never really an issue. Eyes that swivelled towards the door as you entered were soon quickly lowered in shame and hopelessness. Both my parents were doctors and my mum was working at the hospital at this time. We talked endlessly about these patients with the new AIDS disease. I spoke about how isolated these patients were. How shamed they were being made to feel. We had been told that the disease could be transmitted in all body fluids – including blood, sweat, urine and semen. Maybe even in the air. For the first time homosexuals were officially being blamed. Publicly outed and shamed. I felt horrible that sometimes I didn’t even know the patient’s name. I didn’t know where he was from, if he had a family. If he was loved. At home I was able to talk about how I was scared that we were allowing these people to be completely stripped of their humanity and that somehow I was a part of it. These people were dying alone whilst I was in the room. Not to be touched or held. Or comforted. I am aware that these measures had been put in place to afford us a level of protection, but they weren’t protecting me. What was happening was having a terrible effect on me and I knew I couldn’t carry on for much longer. A young man was admitted to the ward and was immediately isolated. I was told that he was a lawyer. He was diagnosed with what was described as End Stage AIDS. He wasn’t in the ward for very long. He had wracking pneumonia but was too weak to cough and was quite quickly in danger of drowning. His hair was gone. There was no muscle or flesh left on his body. His liver was failing and his sunken eyes were yellowed with disease. He was dying and he knew it. I was in his room, avoiding all contact, as usual, when for some reason, something made me look at him. Really look at him. So small and frail. Gasping for each laboured breath. Curled up in a bed that looked enormous compared to what remained of him. With each breath his hands unclenched and flattened against the sheets and without thinking about risk or protection, I removed my gloves and approached his bed. I gently sat on the edge and went to take his hand. He tried to pull away from me but he was very weak by this point. I put my hand over his and with my other hand I gently began to stroke his arm. I looked directly into his eyes and I apologised. I told him that I was sorry. I never said what for and he didn’t live long enough to ask me. I had friends in Edinburgh, some of whom were nurses. Some of whom were young gay men. Some of whom were dying. News was trickling back to me that something very bad was happening in Edinburgh. I knew I had to go home. Edinburgh was dubbed The AIDS Capital of Europe, but I had just come from what was undoubtedly The AIDS Capital of the World. I heard about Milestone House. It was going to be the first HIV/AIDS hospice and I wanted to work there. I managed to secure a placement and was eager to right the wrongs that I perceived had been perpetrated on innocent people in South Africa. Although I had extensive experience of working with patients with AIDS, IV drug use had never been mentioned. I hadn’t worked with scare stories of dirty needles and the heroin crisis that was sweeping across Edinburgh was completely new to me. I had thought that perhaps I could be a calm gentle support for people as they spent their last days surrounded by their loved ones. I imagined that I would make sure that providing the cold side of the pillow would be my life’s work. I would ensure that there was music. I would never let anyone feel ashamed or ‘less than’, isolated or excluded. I would ensure that these people would feel loved. It was horrible. It was scary and rough and fights broke out. TV’s were stolen from the rooms. The atmosphere was threatening and it wasn’t at all what I had expected. No one I met was grateful for my being there. No one was even particularly nice to me. I was viewed with suspicion from the outset. The gay community in Edinburgh began to stay away from this place. They tended to look after their own. I didn’t feel particularly welcome there either. As whole swathes of society were being devastated by this virus, it seemed as though there was division and blame and fury and violence constantly threatening to spill over and there didn’t seem to be a space for me. No one was interested in my mission to bring dignity and cool pillows to their death beds. No one seemed to want to entertain my desire to eradicate the blame/shame that was omnipresent. I felt as though I had no voice. And even if I had been able to speak out, it seemed that no one was listening. I began to lose friends and people I loved. Everyone was scared. But the narrative prevailed that if you weren’t an IV drug user and you weren’t gay, then you would ‘be OK’. Them and Us prevailed. Shame and hiding and fear and secrecy spiralled. And then came the falling tombstones... Living through that was terrifying and at times utterly shameful. I danced at Fire Island (a gay club on Princes St, now Waterstones) and drank my first pint of Snakebite in the basement of The Laughing Duck. I moved easily amongst the people I loved and happily shared my life with. I thrived on the fabulous, the flamboyant and the frivolous. I remember a dinner party where a gay friend tried to put his plate and cutlery separately from everyone else’s and I saw my mother deliberately stack everyone’s together. I saw her embrace him and hold him closely as she demonstrated to everyone that he was included and loved. Memories of the parties and the music and the sheer joy of being young are tainted forever by the news that another friend had died. Funerals became more and more common. I made myself a promise that if I ever had children, I would make sure that I would raise them to know what love means. What being kind means. How destructive hate and shame are. I vowed that I would spend my working life trying to make up for all the wrongs I had witnessed. The shunning, the blaming, the hatred and the shaming of human beings due to ‘Otherness’. I am saddened to see glimpses of what life was like back then, emerging once more as we navigate this global pandemic. People socially isolated, feeling abandoned and overlooked – excluded from society. There is blaming beginning again. Whispered racism where I never imagined I would hear it. People viewing each other, their neighbours, colleagues and friends with suspicion. This time is different. This time, we are all on fire. But the separation is happening again. The gap between the social classes is in danger of becoming a chasm as food banks struggle to provide the most vulnerable in our communities with the very basic essentials. Reports of domestic violence are increasing alarmingly. Those with beautiful gardens and access to green spaces are able to feel the early Spring sunshine on their faces whilst so many others are hungry, scared and have no obvious means of escaping this horror. There have been some amazing acts of kindness. For example, some schools have managed to provide food parcels to the most vulnerable, a life line for parents currently struggling to feed their children. But the most vulnerable in our society – the excluded, the isolated, the disadvantaged, the disabled – are on the outside once more. There are certainly some comparisons to be drawn between what happened with the HIV and AIDS crisis and what is happening today. But there are stark differences too. I hope that some of what we learnt back then can be utilised today. That kindness costs nothing. That we need to care about everyone. We need to look at We instead of Me. We need to be grateful for what we’ve got and be willing and happy to share it. Whether that’s our time or another resource, sharing it will make for a happier healthier society. It always has. I am so grateful that I have lived long enough to see real change in the care and support given to people with an HIV diagnosis today. I am so grateful that those with an HIV diagnosis can now expect to live full and happy lives. I am so grateful that we live in Scotland with PrEP provision freely available. I am grateful that it is now rare to hear of anyone in the UK with an AIDS diagnosis. But we still have a long way to go. Stigma still exists. Shame still exists. Fear still exists. But I know that we are having the conversations that we need to be having. We are no longer afraid of calling out homophobia, transphobia and hate crimes. HIV is no longer the death sentence and inevitable decline towards an agonising death that it was when I was young. But an HIV diagnosis is life changing. And that is recognised and is being widely addressed. Stigma will continue to exist wherever there is fear and ignorance. We need to continue to educate everyone so that we can all live with dignity, equality and inclusion. My wish is that the legacy of all those who lost their lives to AIDS and the complications of HIV did not die in vain. Let all their lives have mattered. Let the harrowing lessons that we have learnt teach each of us to be more loving and accepting in the time we have.