With a cheery wave, Martyn Butler looked back at his pal in a hospital bed and said: “See you soon.”
He had no idea they would be his final words to Terry Higgins, who would die of AIDS-related illness on July 4, 1982.
The 37-year-old was one of the first people in Britain to lose his life to the immune deficiency syndrome that would shatter and traumatise the gay community in the 1980s.
His death 40 years ago tomorrow would change Martyn’s life – and save countless others – by inspiring the creation of the Terrence Higgins Trust, now the UK’s leading HIV charity.
But while the organisation’s name is well known, few people know much about its namesake, something Martyn and co-founder Rupert Whitaker, Terry’s partner, want to redress before it is too late.
Martyn says: “Over the years, we’ve been incredibly protective of Terry. Let’s not talk about him - let’s talk about the trust, the problem and where we go next.
“But I realised recently people didn’t have a clue that Terry didn’t actually know about the trust and we needed to talk about him.
“I’m 67 and while Rupert is younger, he is not very well. There’s a chance in ten years that we’ll be gone and his story will be lost.
"There's only three photos of him in existence and two don't look like how I remember him at all."
Martyn was just 16 when he left his hometown of Newport, South Wales, with “a suitcase, £30 and a dream” to working behind the scenes in cinema and theatre in London.
He met fellow Welshman Terry, a Hansard reporter in Parliament and DJ, at legendary gay club Heaven after his late shifts in the West End.
Martyn recalls: “Terry was the first male friendship I was able to build where he didn’t want something from me – he didn’t want to sleep with me, he didn’t want money from me.
“We just thought the other was cool. We were the first to arrive and the last to leave.
“Terry built a community. He would step up and look after wide-eyed new arrivals.
“When I went to London, I was very wary of men.
“He taught me how to tell people to eff off. It was an eye-opener.
“He was very practical and kind too. If you were broke, he would cook your dinner, take in your washing and give you your bus fare home.
“He was the most radical person I ever met, just by being Terry.”
Heaven was a home to the men in the late 1970s and early 1980s and Terry would DJ while the likes of Kenny Everett and Freddie Mercury mingled.
Martyn says: “There could be Floyd and Mark from Hot Gossip on the dancefloor or the lads from Frankie Goes To Hollywood, all showing off and looking fantastic.
“And right in the middle was Terry, who was the epitome of dad dancing. Rupert described it as watching a human slinky.
“It was a joy to watch. He couldn’t care less if anybody or nobody was watching him. He was having a ball.”
But in the summer of 1981, Terry suffered health problems and fluctuations in his weight.
He ended up collapsing on the dancefloor at Heaven in April 1982 but doctors were unable to diagnose him.
When Martyn paid him that final visit at St Thomas’ Hospital in London, he had no idea it would be their last meeting.
He says: “There was no sense of doom, no sense that he wasn’t coming out.
“The last words I said to him were: ‘Do you expect to be out by Saturday night? If not, I’ll cover your spot.’
“Then I waved and said: ‘See you soon’.
“There was a blessing in that. When I said goodbye to many men later, that word was loaded.
“I learned my mistake, to never say casually goodbye.”
One of the most painful goodbyes was the death of a former boyfriend at London Lighthouse hospice, with Martyn holding his hand beside the man’s mum.
He says: “I walked home that night along Oxford Street, crying in the pouring rain, as people rushed to the tube.
“It felt like we were in a war, there were bombs going off and people dropping everywhere. But there I was in a world where nobody knew or cared.
“There was a moment I felt like the Scream painting, like the only person in the world that knew what was going on.
“The government were missing in action. We were on our own.”
Even campaigning to educate the public on HIV through the Terrence Higgins Trust was a lonely task and Martyn faced discrimination and abuse.
He says: “People were throwing me out of the pub, telling me to shove my leaflets up my ass.
“And this was our own gay community. I didn’t expect it from our own – that was hard.
“My front door was kicked in so many times I could not get insurance.
“At Heaven, people would come up to tell me they had three months to live. I’d look over and see a DJ friend covered in Kaposi’s sarcoma.
“I was surrounded by the horror.
“There were points that I wouldn’t say I felt suicidal but one or two points where I genuinely didn’t know which way to turn.”
But for all the hardship and grief, Martyn is proud of the way the trust has transformed the NHS attitude to patients.
He says: “Forty years ago, you wouldn’t question the doctor, you didn’t have any advocacy at all, you were just told how it was going to be - no discussion.
“We had to go in there and say how we wanted to be treated as patients. That has permeated right through the NHS.
“I have just been through cancer and I was treated as a human being.
“I’m proud that HIV and AIDS has kicked the system up the backside.”
Last month, Martyn and Rupert were awarded OBEs for their work, but the campaigner knows there is still much to do.
He says: “I am shocked and horrified at the level of knowledge amongst young people. We have to be frank with them.
“Most of us realise that these days you don’t have to die of AIDS, but that’s only true if you are diagnosed and on medication.
“It terrifies me the number of people we are going to find only because they show up at A&E not feeling very well.”
While the charity bearing his name will be a permanent legacy to Terry, his loved ones are also creating a memorial quilt celebrating all aspects of his life, rather than the nature of his death.
A list of his favourite songs from his nights at Heaven – such as I Feel Love by Donna Summer and Maniac by Michael Sembello - will be included.
Martyn says: “In a hundred years’ time, someone will look at that quilt and be able to listen to the music we did.
“The lyrics in those songs are really poignant about what we are trying to memorialise.
“I’m more than happy with the legacy we leave behind.
“How would Terry feel? He was all about losing ego, not building one. But I think he’d chuckle.”
