Twenty years have gone by so quickly.
The night Diana died in Paris.
A city where I had nursed a man who had returned home from Sydney to die. The virus was about to be isolated at the Pasteur Institute. My friend’s flat overlooked the Institute’s blue lit windows. We watched the white cladded scientists move about during the night. The virus was isolated as we watched.
In the mid 80s I moved to London to begin working as a patient advocate, home palliative worker/carer, with dying AIDS men. We not only had to struggle with the rapidity of the advance of the disease, but the often instant hostility or fear of people around us. They could include a porter at a hospital to a shop keeper or a neighbour.
We fund raised in pubs and bought decent bedding and other necessities for a home death. The fullest time job I have ever had other than here.
Many assumed we were all infected.
I met Steven ( in the photo below with Diana) when we had both joined Terrence Higgins Trust as buddies, a term I did not like much. Steven was HIV positive and campaigned rigorously for basic rights for his fellow sufferers.
Our role was to befriend dying men and assist them in any way we could. Those days services were non existent, from housing to home care. Part of our role was to interface with social security, doctors and Local Authorities . Soon though, a few of us buddies were overwhelmed with the serious demand of the needs of the men. Doctors sought our advice and we became the intermediary. Research was gearing up, new drugs were being tried, with consent. We dealt with the often horrific side affects in the home before the doses were more accurately targeted.
Not only were we nursing hands on in the bedsit or flat, we often had to negotiate with hostile family members or neighbours. Sometimes scary when a burning newspaper came through a door letter box.
Stephen became a buddie to a dying brother of a famous soap star who sent his brother a Rolex watch, that was instead of coming anywhere near him . The fame of the star brother created another unpaid job for me . I would act as a decoy to mislead tabloid reporters waiting for the scoop of the week, brother of so and so ravaged by AIDS. Stephen and I both rode bicycles and one reporter knew it.
In reality we were being stalked by a reporter, just like the flocks that stalked Diana until her death.
When Diana came out publically and showed there was little to fear as she touched, shook hands, without gloves, conversed and laughed with the very ill, my work on the ground changed almost overnight.
More people from the street would offer a hand as I helped my friend into a taxi to a hospital visit. People would smile gently at us, physical decline is more visible in the young, and not turn away as they often did before.
Our role became easier too if we were negotiating with a public servant at a social security office.
Diana had worked her magic.
One snippet Stephen shared with me before he died was that Diana used to visit the ward in mufti ,and at night, to have a sign language lesson from him and one other patient. Those moments he cherished, it was her beautiful eyes, he said.
Diana gave unconditional joy , she radiated a rare beauty and gave my friend the strength to live another few months during which he agreed to take part in advanced medical trials. He knew he was going o die sooner than later and wanted to do everything he could for others in the future.
That we could all learn from.
Steve Hornibrook 23rd July 1963………………..1st February 1991.
Diana 31st August 1997.