I was volunteering at George House Trust – a charity which offers support to people living with HIV – cataloguing their archive, when I reached for a large black leather album.

I could feel the tears welling up as I flicked the pages to the one I was looking for.

There it was. The words ‘To be remembered’…Paul Higson. Born 31.8.68. Died 01.11.96, and a photo of a smiling young man.

Just one entry in a memorial book for people who died of AIDS.

As I read those words, surrounded by boxes of reports, photos, memorabilia and meeting minutes, the memories flooded back – from nearly 30 years ago, but strong as ever.

Such joy and happiness; pain and loss.

I first met Paul in 1992, when I was 29 and a student at Sheffield Hallam University. He was visiting a friend who’d told me Paul needed cheering up; he’d just found out he was HIV positive.

The three of us met at a club. By the end of the night, our mutual friend had disappeared, leaving Paul stranded – so he came home with me.

We talked until the sun rose, constantly laughing as he made jokes and sang along to the music that was playing. By the morning I felt I knew everything about him: His love of music and cars, his work at an accountancy firm, and his family.

But behind the carefree façade I could see there was also a frightened young man whose world had been turned upside down.

When I hugged him goodbye I didn’t want to let go. We swapped numbers and spoke daily on the phone until he came to visit me from Lancashire the following weekend – a routine that then carried on for a year.

Being with Paul just felt right. I’d found my soulmate.

I moved to Manchester to do a Masters – but then Paul started having health problems.

First, Paul had several seizures, which meant he could not drive for six months and had to take additional medication, in addition to his preventative medication, as his immune system started to weaken.

He started a course to complete his accountancy exams but after a few months his health got worse with night sweats, sickness and diarrhoea, leaving him weak and losing weight.

I picked him up and brought him back to live with me in Manchester.

Weeks passed with no improvement and he became thinner and weaker, eventually needing a wheelchair when we went out.

By this point, I’d given up my studying to care for Paul. His sister, Linda, was a great support but lived in Canada and his widowed mother would not have been able to cope with the illness – so it was up to me and there was no way I would ever let him down.

He was my world.

There were regular stays on the infectious diseases ward at North Manchester hospital. The terrace house I was renting was unsuitable for Paul’s needs so Body Positive, a Manchester HIV charity, helped to get us a flat in Hulme.

By November 1995 it looked like the stomach infection that was causing his illness – an opportunistic infection that took advantage of the suppressed immune system – was going to kill him.

With little left to lose, doctors put him on a large dose of drugs – and the results were incredible. Within a few months Paul had put on weight and all symptoms had gone. It was like a miracle.

Paul visited Linda in Canada and she rang me in tears saying, ‘I don’t believe it – I’ve got my brother back.’

I started work and life got back to normal. But the bug causing Paul’s illness slowly became resistant to the treatments and started to return.

SIx months later, he was back to how he had been.

This time, I continued working while caring for Paul, as he had support from two ‘befrienders’ – Paul from Body Positive and Barbara from George House – who visited regularly and provided emotional support.

Along with the team at North Manchester hospital and a home help, they helped us to cope; soon I was lucky to get four hours of sleep at night, what with changing bedding wet from Paul’s night sweats and helping him to the bathroom.

At lunch, I’d come home to help Paul get out of bed, shower and dress. Evenings were spent doing laundry, cleaning and preparing his medicine for the following day.

The only time I had for myself was at a weekly group for HIV-negative partners run by George House Trust volunteers that provided support from others who were going through the same things.

Eventually Paul was so weak a feeding tube was inserted into his chest to provide nutrition, and I was taught by nurses how to administer it along with all his other drugs.

By this point, Paul was a shadow of his former self but his humour always shone through.

The treatment seemed to work and his health improved – until he became unwell again and, this time, was diagnosed with an E.coli infection.

The feeding tube was removed in case it was the infection site.

When Paul told the consultant that he didn’t want the feeding tube replaced, because he didn’t want to go on like this and it just seemed to be delaying the inevitable, there was a strange sense of relief for both of us.

Without any nutrition, Paul would have about three weeks left to live – but the rollercoaster of illnesses followed by slow recovery would be over.

There’d be time for tears later but there were three weeks to pack with memories first.

Having come off treatment, Paul was started on palliative care, including regular doses of morphine administered through a syringe driver, and we returned home.

Initially, there was a relief from symptoms and the first week we went out daily – but by the second week Paul was too weak. So many people came to visit and say goodbye: Physiotherapists, nutritionists and social workers, as well as friends and family.

Paul died at home on 1st November 1996 with me and Linda lying by his side.

He was 28 years old.

The situation now is so different with effective HIV treatment. Paul was so unlucky that these treatments were not available in time for him.

I often think about what Paul would have achieved if he had not died so young. AIDS took so much talent, so many wonderful people from us.

I now work for the Passionate about Sexual Health (PaSH) Partnership: A collaboration between BHA for Equality (formerly Black Health Agency), the LGBT Foundation and the George House Trust, which offers support to those living with HIV and which aims to help end HIV transmission within a generation.

Caring for and losing a partner to any disease is devastating but the stigma and fear around HIV in the 1990s made it particularly intense and probably brought Paul and I closer together.

I treasure the memories I have of Paul – and count myself lucky to have people in my life who also remember him.

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

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