I had my two daughters very young having dropped out of the first year of nurse training to get married.  When Denise was 9 and her sister Sue was 11, I started teacher training and it gives me no pleasure to admit that I began to realise what I’d missed in my later teenage years; at the same time my husband was having affairs and wanted to commit to another partner.  For the sake of their security he persuaded me that the children should remain with him.  I was unaware of the damaging effect my walking away would have, and later realised that I would have to earn the love and acceptance of my daughters.

Denise was a bit of a wild child and when she was 15 came, reluctantly, to live with me after she was removed from secondary school in Chelmsford for sharing marijuana.  Her sister Sue had also come to live with me when she was 15 and was now in Plymouth about to start training as a nurse. 

Denise started at a sixth form college in Beaconsfield in 1982 not knowing any other student.  She was lonely, angry and rebellious.  She met Phil while in the sixth form. He too had a disrupted background and I think it was this that brought them together. 

Some years later, she admitted to me that he was a heroin user and was serving 3 months in prison for selling a Methadone script. While in prison Phil was given a routine test for HIV but kept the result to himself.  Their relationship ended in December 1985 although they remained close friends for the rest of their lives. 

Denise only lasted a term at university. During this time she wrote me a letter telling me I was a weak person whom she hated. It really was a horrible, raw letter.  I rang a mutual friend, Justin, for advice.  He suggested that he would arrange to visit her; I could then turn up ‘unexpectedly’ and ‘we’ll see what happens, I’ll either hold both your hands, or comfort the one who comes off worst’.  I knocked on the door in Kentish Town, absolutely quaking. Denise answered the door, paused for a moment, then said, ‘Come on in, Justin’s here’.  Years later she told me, ‘I thought it was the bravest thing you’d ever done and I forgave you instantly’.   I didn’t tell her it was a set-up; it was enough that the barrier had broken.  Thank God for Justin.

In the early 1980s I was aware of HIV and AIDs because Justin was gay and beginning to be concerned.  In London, at that time, the perception was that only gay men were affected, nothing to do with women.  Later the effect of needle-sharing became part of the narrative of how HIV was transmitted.

Denise went off fruit picking in Greece, leaving a note on my desk at work, ‘Look after Jingles, (her teddy bear), I’m off to Greece with Mark, you don’t know him.  He’s lovely.’  And that was it.  Occasionally I’d get a phone call when she returned, ‘Hello, I’m at such and such a motorway services, can you come and pick me up?’  She would have hitched lifts across Europe. Of course, I went – and don’t doubt that there were times when her father did the same.

Mark and Denise returned separately to UK in 1987 having spent time working and travelling in Europe, Turkey and Israel.  But it wasn’t until 1989 that Denise was tested for HIV as a result of Mark contacting her to let her know he had tested positive.  She came into my office and told me, bluntly, that she was carrying the HIV virus.  It was the night before I was due to travel to Prague for a big work event.  I froze.  It didn’t occur to me to go to the director and explain, ‘I can’t do this, I need to be here for my daughter,’ nor did it occur to me that Denise was reaching out to me.  Staying employed to be able to support both of us was uppermost in my mind.

By the time of her diagnosis she’d had sexual relations with a few young men and her priority was to track them down and alert them to her status; a painful task.  In a letter she wrote to me from Greece in 1987, it’s clear that we had talked about HIV because she considers the risk, ‘…but if I am, it’s too late to do anything about it.  But what I am doing is not sleeping around.  Everybody else does, but I am not.’ 

Denise realised that, because of what she had ahead of her, she couldn’t plan for quantity of life – but she could create ‘quality’ of life. It became her watchword. Later that year she came with me to Edinburgh, where I was working at the Film Festival.  It was an opportunity for her to experience the Fringe.  She had a whale of a time, totally elated by the whole event.  What I experienced were the buses with huge posters on the side – Don’t die of ignorance.

The signs of illness were beginning, ‘Did you know that you have sinuses right down at the bottom of your skull?  Evidently mine have filled up and that’s not normal. . .’   Everything began to happen very quickly.

All her life Denise had been a list maker. She even had lists of lists.   Top of her bucket list was ‘get married’.  She met Alan.  The marriage ceremony was in High Wycombe Registry Office, they then drove to Scotland to visit Alan’s family.  Alan expected his family to be proud of him for taking on the responsibility of caring for someone who was terminally ill.   They weren’t allowed to stay a second night in his parent’s house and his sister wouldn’t allow Denise to use the lavatory.  In both houses bed sheets were burnt after they left.   The relationship with Alan fell apart and they were divorced within the year.

There was a positive spin on everything she did. She started campaigning. The school in Chelmsford hadn’t let her talk to the girls, but other schools did. In her diary she records how impressed she was by the reaction of students, delighted that her advice about behaving responsibly and getting tested was being taken to heart. 

She was particularly angry about the term, ‘innocent victim’.  By using it about her, the implication was that gay men or IV drug users were not innocent victims.  She stressed this injustice during her talks to youth clubs, carers and support groups.  By now she was being invited to talk to trainee doctors and nurses and she took part in short information films for both Thames TV and the BBC. 

There were indications that Denise’s health was deteriorating: mosquito bites didn’t heal, her white blood cell count was low.  She decided to return to live in Chelmsford where her oldest and closest friends were.  It was a good time to make the move as government and councils were planning for a pandemic and were running pilot projects which led to her being allocated a small council flat very quickly.   She made contact with Dr David Blainey the respiratory specialist at Broomfield Hospital.  He was responsible for HIV and AIDs patients because, in the male HIV pattern, PCP was the main effect needing hospital treatment.  But it was shingles that announced the beginning of AIDs for Denise.  Dr Blainey told us, ‘Statistically, in the US, Acyclovir works for young males of your age, but the side effect is that it starts to destroy your liver and kidneys. It has to be managed very carefully’.

We were returning from a theatre production when she said, ‘by the way, I’ve got this hefty shadow round my left eye.’

The herpes, the shingles, had begun to invade her spinal cord.  Acyclovir, which helps to deaden the terrible irritation, was the only drug available.  Her retina was detaching and gradually she lost the sight in her left eye.  Soon afterwards she lost the sight in her right eye and agreed to surgery to re-establish some vision.  Some days after the operation she was given thick, milk-bottle lensed glasses. She was delighted to have some sight back.  She returned home, but by the weekend she was back in hospital, retinas detaching once more.  There was nothing that could be done.

She continued to look for the positives, creating mental lists about using a long cane, learning braille, possibly a guide dog.  By this time she was getting a lot of support from her friends, members of a local church and her social worker, Jim, who started negotiating for a more suitable flat. She started to have epileptic fits and, in late 1992, she said to me, ‘I think it’s time you became my full-time carer’.  Up to this point I had been keeping a respectful distance – she was 27, an adult with plenty of support.  I immediately stopped working and moved to a small house in Maldon, paid for from the Carer’s Allowance.  It was a little too far from her, but I knew I would need my own ‘healing space’.  Denise was frail. It was agony watching her disappear.

My partner, Dimitri, and I had planned to spend Christmas with Denise, Sue and her family in the house in Maldon. Then, on Christmas Eve, Sue rang to say they couldn’t come, coping with three young children and a long journey was too much.  I will always love her husband, even though they are now divorced, for intervening.  ‘If you can find, at this time on Christmas Eve, a Christmas tree that Matt can decorate,’ he said, Matt being the eldest of their three children, ‘then we are coming’.  It was already dark, ‘Sh*t, where can I get a Christmas tree at this time of night?’ I drove out to a farm that had been selling them. It was in darkness but I knocked on the door, ‘I need an emergency Christmas tree’.  All they had left were little battered ones, ‘I don’t care, I must have a Christmas tree!’ Then I realised I’d come out without my purse. I must have been a wreck because the farmer said, ‘That’s alright’.

Denise was, by now, blind, inarticulate and very weak, but she was obviously happy that all the family were together.  I’d bought her a child’s soft toy that had multiple handles made from different types of fabric. It was very tactile and had a bell inside.  She used the bell to communicate up until a few days before she died.  

In late January I phoned her father to tell him Denise was near the end and to invite him and his wife, Kate, to come and share in her care.  It was very civilised. Kate, an ex-nurse, organised our shifts and rest days: 48 hours with Denise then 48 hours in the house in Maldon. We were all round her bed when she finally passed away in the early hours of 19th February 1993.

I don’t feel sad or jealous that research has found medication that will now keep those who are HIV+ healthy; I’m truly glad that it’s happened.  My daughter’s story is important because there is a tendency, now that HIV and AIDs are manageable, for the memory of the pandemic to be narrowed down to a ‘gay disease’, rather than remembering how many people have been affected.