Shownotes
One of the UK's longest-surviving people with HIV, diagnosed in October 1982, on bathhouses in San Francisco, standing in the darkest corner of the bar, and why a man in crimson pantaloons saved his life.
Summary
In 1982, Jonathan Blake was a 33-year-old actor waiting tables at Joe Allen in Covent Garden. London was horny. He'd just come back from San Francisco and the steam baths. His lymph nodes swelled until he was walking like a gorilla. At the Middlesex Hospital, the cultures took a couple of days. When the results came back: you have a virus, there is no cure, you've got between two and nine months to live. But you can go home.
He felt like a modern-day leper. He would go to the bars in Earl's Court and stand in the darkest corner - wanting people but unable to engage. What was his opening line? Hello, my name is Jonathan, I have this killer virus coursing through my veins. He planned suicide: a hot bath, pills, razorblades. Then his mother's voice: Jonathan, you clear up your own mess. So like a nice Jewish boy, if you can't kill yourself, you better get on and live.
On 1 April 1983, he saw a tiny advert in Capital Gay for a coach to Greenham Common. It said: everybody welcome. As he turned to flee, a voice said: hello, my name is Nigel. Green Wellington boots, crimson pantaloons, a mop of black curly hair. Nigel brought banana and two jam doughnuts to tea and suggested they squat together in Brixton. Jonathan thought: I've got about two months to live. Why not? They were companions for almost 38 years. Jonathan refused AZT, refused the Concorde trial, and survived to combination therapy in 1996. The morning of the fourth week, he woke with such energy he laid a patio. It's still there.
Key Moments
- [00:00] "You have a virus" - diagnosed at the Middlesex Hospital, two to nine months to live, but you can go home
- [04:33] San Francisco steam baths - Turkish baths, fuck rooms, and the year before everything changed
- [09:51] The darkest corner of the bar - wanting people but unable to speak, and the worst chat-up line in history
- [12:41] The Roman way - planning suicide, and a Jewish mother's voice pulling him back
- [14:50] 1 April 1983 - the tiny advert, the coach to Greenham Common, and the man in crimson pantaloons who gave him a life
- [22:43] English National Opera - a letter on a noticeboard thanking colleagues for supporting a man who'd died of AIDS, and thinking: when I get ill, they'll understand
- [26:56] Refusing AZT - the Concorde trial, the belief that never touching the drug is why he's still alive
- [33:14] The morning of the fourth week - combination therapy, the energy of Atlas, and a patio that's still there
- [41:30] U=U - the first unprotected sex since before 1982
- [45:07] Care homes and the closet - the biggest fear of ageing: I ain't going back in the closet
Dedication
Jonathan remembers George Hudson, met in the Coleherne in 1977, and Nigel Young, who gave him a life and died in 2022.
About Jonathan Blake
Jonathan Blake was diagnosed with HIV in October 1982 and is one of the UK's longest-term survivors. An actor, tailor, and activist, his role in Lesbians and Gays Support the Miners was depicted in the film Pride. He lives in south London with a contorted hazel tree he planted in 1989 - a tree injected with something that makes it grow differently, just like him.
Resources
This podcast uses the following third-party services for analysis:
Podtrac - https://analytics.podtrac.com/privacy-policy-gdrp
Transcripts
Jonathan Blake
And then they said, you have a virus. There is no cure. You've got between 2 and 9 months to live. But you can go home.
::Dan Hall
Diagnosed with HIV in October: ::Dan Hall
Hello there.
::Jonathan Blake
Thank you. Hello. Hello. And I'll tell you, it's a it's a pleasure to be here.
::Dan Hall
Jonathan, can you take us to a period before you started to be symptomatic? Can you tell me what Jonathan was like? What was the world like? What was the gay scene like?
::Jonathan Blake
se we're talking about, like,: ::Jonathan Blake
Joe Allen in New York was famous because they said all the waiters were out of work actors. So it opened in, in London. And I started to work that when I was out of work. And it was great because I would meet all my actor friends who were working in the West End or what have you. Who would be coming in?
::Dan Hall
I loved your islands. I had my 16th birthday there.
::Jonathan Blake
It was literally next door to the to the Lyceum Theatre. And you would go down those stairs, wouldn't you? And you'd come into the bar and then the restaurant opened up.
::Dan Hall
It was just martinis and Broadway posters.
::Jonathan Blake
Yeah. Really? Well, yeah.
::Dan Hall
And flirty waiters.
::Jonathan Blake
Of course. Of course. Which lasted you train? Well, if you want tips, you are. And the stars came in because they were treated just like ordinary people. But they were, you know, place where they weren't going to get hassled. So Liz Taylor would come in there, you would see these big stars.
::Dan Hall
You're waiting there. It's: ::Jonathan Blake
And London is really horny. We would finish shifts. We would go down to heaven to kind of just unwind. And it was. It was great. It was a really great place to be.
::Jonathan Blake
I've gone to San Francisco, I'm staying with my friend George, and I go to the steam baths. What else would I do?
::Dan Hall
To the uninitiated, mare is what happens there.
::Jonathan Blake
That basically Turkish bath, steam bath, sauna and sex. They have cubicles, rooms. They have flings, they have fuck rooms. They have dark rooms. It's like a kind of public orgy in a private space.
::Dan Hall
Sounds rather like foxhole.
::Jonathan Blake
Foxhole is too tame. You think?
::Jonathan Blake
I was just so. It was this country's two time.
::Dan Hall
So you've returned back from San Francisco and what? Yeah. Where are we now? What?
::Jonathan Blake
Yeah, it's: ::Dan Hall
Gosh, I remember that IRA cabinet. Okay.
::Jonathan Blake
Oh, yeah. They talked about what was happening, what was going on in San Francisco, in New York, in Paris. And, you know, of course, London. I was feeling round about sort of July, sort of August.
::Dan Hall
Of 82.
::Jonathan Blake
Of 82. And little by little, I'm aware that some of I'm beginning to feel uncomfortable and and not for, well, most of my kind of, lymph nodes begin to swell.
::Jonathan Blake
And I can no longer work at Joe Allen's.
::Jonathan Blake
I eventually made an appointment to go and see my GP, and I was walking kind of like a gorilla, you know, because these lymph nodes were up under my arms. And so to put my arms by the side was painful. And they were in my groyne as well. So I was kind of walking bandy gait. And as I walked into her room she said, shake my hand, and I shook her hand.
::Jonathan Blake
And then I sort of reached out. She felt the lymph node in the crook of my, my right arm, but oh, what did you do that for? Because it was really painful. And she said, that's the sailor's handshake. Whenever the sailors went into port, they would shake the women's or the men's hands that they were going with.
::Jonathan Blake
And if that lymph node was up, it was a sign of syphilis. So she suggested that I should go and test. And I always used to go to James Pringle House, which was the sexual health clinic of the Middlesex Hospital that was on Charlotte Street. I arrived there and they were just all over me, and they wanted to do a biopsy of one of my lymph nodes, and they took and they put me in a side ward.
::Jonathan Blake
And I always felt like, you know, because I was queer, I was putting aside Ward so my homosexuality would not, in fact, the rest of the hospital. But I'm also aware that there is someone else in the room.
::Jonathan Blake
oking at death's door back in: ::Jonathan Blake
It took a couple of days because they needed the cultures to whatever crowd. When they came back, they basically said, you have a virus, there is no cure. You've got between 2 and 9 months to live. There will, of course be palliative care when the time comes. And then they said, but you can go home.
::Dan Hall
And how old are you?
::Jonathan Blake
I'm 33.
::Jonathan Blake
And I don't even remember getting back to my flat. My life is over before it's even begun.
::Dan Hall
What is the world like when you're told it's all coming to an end?
::Jonathan Blake
Well, it's windy, I. It's the only word I can express. It's like just everything is is kind of knocked out of you. And it becomes a very lonely place.
::Jonathan Blake
I feel like a modern day leper. I isolated myself, I didn't know you know what to do because I realised that I needed to be around people. So I would go off to the bars in the east stands. But I would stand in the darkest corner. So I wanted to be with people. I wanted to be around people, but I didn't want to engage because what am I going to do?
::Jonathan Blake
Oh, hello, my name is Jonathan. I have this killer virus coursing through my veins. I mean, it's not exactly the best opening like this. It.
::Jonathan Blake
There was very little in those very early years of support. And what support was actually created by communities of gay men kind of getting together. Well, actually, gay men and lesbians, because the lesbians were just amazing in terms of the support that they gave to their gay brothers and what have you. And that just seemed to be just these numbers.
::Jonathan Blake
But with dying, you had friends who had friends who knew them. So, you know, it was this kind of, sort of expanding number of people that you were aware of. It all felt so bleak, so awful. And and I think I must have felt shame to gut that somehow I had allowed myself to, to get this, to catch this.
::Dan Hall
If you have a disease, a virus, a condition, and society tells it you are disgusting, then you are not touched, you are not held, you are not hugged.
::Jonathan Blake
One did feel that one was untouchable and not to be touched. And yet human touch is just the most important thing in the world for someone to just give you a hug, you know, the difference that it makes is phenomenal.
::Dan Hall
Did you ever feel like it was just too much?
::Jonathan Blake
Oh God no, no, I reached that point. You know, one was picking up the copies of capital can reading what lay potentially in front of me.
::Dan Hall
What did lay in front of you.
::Jonathan Blake
Really horrible deaths, scanning horrible illnesses and diseases. It was so awful. And like, I, I couldn't work out what to do, except that I was going to basically run a hot bath. I would take some pills that I'd got, I would take some alcohol and I would slash my wrists and I would bleed out the Roman way.
::Jonathan Blake
And I got it all planned. I'd got razorblades sort of by the end of the bath. And, you know, I'd got the pills and I got some alcohol. And then the voice that my mother gold comes into my head. Jonathan, you clear up your own mess. You don't leave it for others to clear up. And I'm sort of forced back to reality, of course.
::Jonathan Blake
And I would leave one hell of a mess. So then, like a nice Jewish boy, if you can't kill yourself, you better get on and live. But how am I going to do that? What do you do?
::Jonathan Blake
I would continue to go back to the gay bars and stand in the corner and hide away.
::Jonathan Blake
re running a coach leaving at: ::Jonathan Blake
And it said, everybody welcome the little phrase. Everybody. Well could that's what hit me. And I just thought, all right, this is going to be my re-entry into society. I'm going to go down there. I girded my loins and, and got the tube at Shadwell and came out at Russell Square. And I remember I could see the coach outside gates, the world.
::Jonathan Blake
And I just thought, what the fuck am I doing here? And I turned on my heel to flee, and this voice went. Hello? My name is Nigel. Who are you? And I swung around on my heels and I saw this young man wearing green Wellington boots, crimson and ochre pantaloons, this crimson pair of singlet on this mop of black curly hair.
::Jonathan Blake
And I just went, oh, Jonathan. And we walked off to the coach together. Nigel was introducing me to all his friends. I told him about my, my sort of diagnosis, but it just seemed not to make the slightest bit of difference. And it was amazing. And the next day I said to him, why don't you come and have tea with me in my flat in Shadwell?
::Jonathan Blake
And he arrived with a bunch of banana and two jam doughnuts. He brought tea and he said to me, you're living isolated here in the stand. I'm living in north London. I know of a squat in Brixton. Why don't we move in together? And I just thought, you know, I've got about two months to live. Why not?
::Jonathan Blake
And we did.
::Jonathan Blake
Nigel was, you know, amazing and so full of energy. He would entertain people in terms of in his kitchen. He would sort of he would he would cook meals and talk while he's cooking. And it's just the most amazing sort of buzz. I mean, you wouldn't eat till midnight, but, you know, it was just incredible being there. And he wrote plays.
::Jonathan Blake
It's a joy. It's a real joy.
::Dan Hall
So you've been given this sort life left to live of months, and you have moved in to a squat with a chap who is a boyfriend partner quite quickly.
::Jonathan Blake
Can companion.
::Dan Hall
A companion, but you don't expect to live that long.
::Jonathan Blake
No, I've, I've, I really I really didn't around.
::Dan Hall
When did you start to question the medical diagnosis that you weren't going to see it through for many months?
::Jonathan Blake
In a way, I never kind of questioned that. I just thought as long as I keep myself busy and occupied, we don't need to deal with that. Now that I'm sort of with, with Nigel, it's been just, a really amazing time, and I can't believe that, you know, one is seeing people who are fading, and that isn't happening to me.
::Jonathan Blake
I'm not saying that I'm sort of, you know, big and strong, but, you know, I'm able to be active.
::Dan Hall
And what's your sex life like during this time?
::Jonathan Blake
Oh, my sex life ain't good. I don't want to in any way pass the the virus. The only kind of notion in terms of, of of sex is that the I will go cottage. You know, you go into public toilets and sort of, at the urinal for the very usually sort of, a number of men who kind of, flaunting their that tackle, but sort of.
::Jonathan Blake
Yeah, it was always very dodgy.
::Dan Hall
So not the best, not the best intimacy for you.
::Jonathan Blake
Know, the best intimacy for me. But kind of one one dealt with it.
::Jonathan Blake
Ken Livingston had this amazing policy when he was leader of the the GLC, the Greater London Council, than if you were out of work and unemployed. You could pay £1 and for 12 months you could do any number of courses, City Lit or Morley College or any of the, you know, London, education places. The next day I've paid my pound, so I go down to Shoreditch nine role in this cotton making class.
::Jonathan Blake
And it's lovely I just I love it it's it's so geometric and it's very satisfying. And you kind of sort of show with a little dot where you will take out fabric to, to kind of cinch in the waist or what have you. I mean, it's just I loved it. One of the tutors said to me, I don't know if you'd be interested, but we do a three year City and Guilds diploma in tailoring.
::Jonathan Blake
Well, in that way I just laughed. Oh, well, I ain't going to be long around. Long enough to finish three years. But then I thought about it and I thought, well, you know, why not? Because again, that's going to keep me occupied and busy. So I thought, well, let's do it.
::Jonathan Blake
At the end of my third year, one of my tutors at the London College of Fashion said, look, I can't get you, a job, but I could get you an interview for the wardrobe at English National Opera. Well, I love opera. It's so totally overblown, and it's just great. I love it, and Varg not. Oh, God. Just.
::Jonathan Blake
I mean, arch anti-Semite, but my God, the music is just ravishing. So I arrive there with my portfolio feeling very nervous, and I'm asked to go and sit in the men's workroom and wait to be called for my interview. So I'm looking at the, the noticeboard, and this letter jumps out at me from Saint Mary's Hospital, Paddington, thanking everybody in the workroom.
::Jonathan Blake
And remember, this is: ::Jonathan Blake
You know, it'll all be by osmosis and what's next. But it's a safe environment.
::Dan Hall
We are now several years since your diagnosis.
::Jonathan Blake
Yeah.
::Dan Hall
You have not survive long enough into Kylie's second or possibly third single.
::Dan Hall
And you're not dead. Yeah, but you've had the pressure of this sword of Damocles, and you're still now, years later.
::Jonathan Blake
Yeah, but I'm not. You think? But I'm not thinking about that. It's not that I don't believe them. I've had a couple of bouts of shingles, but, you know, I know it'll happen when it happens, so to speak. But, you know, as long as I keep myself occupied and busy, it's almost like there won't be enough time for the virus to, to, to to get involved.
::Jonathan Blake
hing called stigma, you know,: ::Jonathan Blake
It can affect anybody but the press. The right wing press recognised it and they used it to attack gay people because we had made such advances with gay liberation.
::Dan Hall
What are your thoughts on accusations of it? It wouldn't have spread if you'll weren't so promiscuous.
::Jonathan Blake
Oh, it's a nonsense. It's a nonsense that the English or the British just don't deal with sex very well. We don't talk about it. And not everybody is monogamous. Not everybody wants to be monogamous. You know, monogamy is something kind of created by the kind of Abrahamic religions. But the world doesn't doesn't work like that. I like people, I like sex, I like cocktails, you know, I like the mix.
::Jonathan Blake
And I don't think that makes me a worse person. The CD4 count is, the kind of it's it's a barometer of how healthy your immune system is. And 200 that was considered to be an Aids diagnosis. You work back on the way out when my CD4 count felt 200, I freaked.
::Dan Hall
But why did you feel anxious when actually, for a number of years you had been preparing for this moment, you know.
::Jonathan Blake
Like Never bitten? No, I had never been preparing for that moment. So when it happened, when the reality was that here I was being told that I now have an Aids diagnosis, there is no support network because I just get to see whoever happens to be around, you know, never the same, you know, doctor, registrar, consultant, what have you.
::Jonathan Blake
In: ::Dan Hall
And it was hailed, wasn't it, as a miracle drug?
::Jonathan Blake
It was hailed as a miracle drug. What they never told us, and one learned later on was that it was a failed chemotherapy drug. And what old chemotherapy drugs used to do was that they would wipe out your immune system. But taking the cancer with it, but leaving you with no immune system, well, that is precisely what the HIV virus is doing, except it's doing it slower.
::Jonathan Blake
Any opportunistic infection PCP, you know, this Pneumocystis pneumonia or and the CMV retinitis when you could go blind and and your brain gets addled. I mean, there were all these awful, just awful, awful illnesses. And what happened was people would rally for three months and then that's it. It killed more people than it killed.
::Dan Hall
Were you tempted to try it?
::Jonathan Blake
No. They said, we have this cohort and we cut it in half and one half gets the pill and the other half gets the placebo. And I went, well, excuse me, but, don't you pair us up so that someone who's got a similar build as me, that we're paired up and then one of us gets the pill and the other gets the placebo, and they went, oh, no, that's far too complicated.
::Jonathan Blake
And I just kind of saw red and I got belligerent. And I said, if you can't be bothered to pair up, I can't be bothered to do that trial. And I then, go to see a young Mark Nelson who wants to put me on the medication, and I flat. And I fled to this place called the landmark.
::Jonathan Blake
And the landmark was, a building which, was created specifically for people, affected by HIV Aids. So neither meant you were living with the virus or that you had a family member who was living with the virus, and you could go and get information, support. It was a lifesaver. So I went there after this incident with a young Mark Nelson and said, I don't know what to do.
::Jonathan Blake
I need to find, a new HIV consultant. And someone said, oh, I've got a wonderful one called Chris Taylor. I mean, he's worked at the Caldicott Clinic at King's College Hospital. Well, King's College Hospital is down the road and around the corner from where I live, whereas I'm travelling halfway across London to get Chalice in Westminster. So I rang up and I made an appointment and I went to see him and he listened to what I was saying, and he then said, all right, let's see if you can tolerate sectarian.
::Jonathan Blake
y that was what I was on from: ::Jonathan Blake
In: ::Jonathan Blake
And we'd had wonderful horror and I just, you know, please, I just was not interested.
::Dan Hall
Did you allow yourself to think I'm on my way out?
::Jonathan Blake
No. Strangely, no. I don't know what an I just I didn't go to energy fora but but I remember, you know, going and and seeing Chris Taylor and I had reached a point that my CD4 count at had had dropped to 70.
::Dan Hall
Okay. Which is bad.
::Jonathan Blake
And so Chris said, you know what? It's time that you bit the bullet and you started the combination therapy.
::Dan Hall
Can you tell me then what is combination therapy? Why is it important?
::Jonathan Blake
A combination therapy is where you take a number of medications, which essentially block the receptors on the HIV virus, so that it is not able to replicate.
::Dan Hall
So your HIV doctor, Chris, at the Caldicott Centre at King's College Hospital says to you, you've got to go. And combination therapy. How is combination therapy different from the medication that he'd put you on before? Because he'd already had you on quite a successful combination of drugs, Sydney.
::Jonathan Blake
But it was not the, drugs which are specifically aimed at the virus. The problem was that of course, it was hugely expensive, but we had the National Health Service, so I was I had access and I remember, you know, the first week there was just nothing. And the second week there was still nothing. And the third week there was still nothing.
::Jonathan Blake
And I thought, I'm taking all these pills and and nothing is happening.
::Jonathan Blake
The morning of the fourth week, I woke up with such energy I could not believe it. It was like I was Atlas so I could carry the world on my shoulders. You know, I was Lazarus that was just raised from the bed. And so much energy that I lay the patio outside my bedroom. French windows. I've never done anything like that before.
::Jonathan Blake
And it's still there.
::Dan Hall
Did you think at that time, my God, this might work? It's easy for us with hindsight to look back and go. And so he started taking combination therapy and that was great. But of course, you didn't have the benefit of hindsight. You had no idea this was going to work.
::Jonathan Blake
No, but but when it worked, God, it was just amazing. And actually, I think one of the reasons is that I am here is that I never touched AZT.
::Dan Hall
I keep reminding people of of pop culture, but it's because I want to make people realise that this isn't ancient history. We're talking about the year in which take that split up, you know, this is how the Spice Girls released their debut album. You know, this is this is all stuff that's in oh, that's in our recent memory.
::Jonathan Blake
Got your fabulous start. I just I love this I love the way that that that you can you put this and and and into a, an arena where people can just understand.
::Dan Hall
What's lovely about pop culture references is it stops us othering your experience. It stops it feeling, it stops us being able to other. It was saying that was in the past. That isn't a life I can identify with.
::Jonathan Blake
I basically loathe Taurus. Essentially. However, I think Norman Fowler, who was Thatcher's health minister, is an extraordinary man. He not only gave money for research and development to Big Pharma, but he also gave money to drop in centre. So places like the London Lighthouse, which was this amazing building which had a hospice on the, the the fifth floor, the top where people could go and die with dignity.
::Dan Hall
I had a lovely holiday romance with a lovely chap called Kevin in Philadelphia. And, we did Food Chain together, and we spent this lovely time driving around Philadelphia delivering food to people and I came home and carried on with my life, and I decided to get back in touch with him. And he had a really unusual name.
::Dan Hall
And literally the first thing I ever googled or you told whatever the search engine was, was his name. And I got his obituary page. Wow. And part of all the work that I do now is sort of my apology to him just being so taken up with being a 23 year old at university and not not going on my instinct of thinking, what's wrong with Kevin Hancock?
::Dan Hall
But the food chain, he was so happy doing it. Yeah, and so sorry. That was a bit of an aside.
::Jonathan Blake
No, no, no. And and food chain you know is is here as well. They would have a central kitchen where they would cook food and they had drivers who would deliver it to, to people who weren't able to, to cook. Well, they couldn't get out or they couldn't shop. And there are an amazing organisation. Food chain organised a display of all the UK aids quilts and they are so rarely seen they decided that they would organise for for people to pick up a metre square bits of calico, and that they could make a patch for a friend or someone they knew.
::Dan Hall
Could you explain what the quilt is?
::Jonathan Blake
People wanted to remember that their loved ones and one way of doing that was to to make up quilts, and that there is a kind of memorial.
::Dan Hall
And I remember my friends Chris Lovett and Jane Sadler brought the quilts up to Marshall College, which is the medical college up at Aberdeen University. Where were we were studying? And this was a huge, huge, I think, early Victorian hall.
::Dan Hall
It was sort of moving but exhausting and exhilarating all at the same time.
::Jonathan Blake
Yeah. No, I mean, it is it's it is quite something.
::Jonathan Blake
We went to see it and it was great because there was a lift and Nigel was in a wheelchair, and so we could get him in the in the lift and get him up to the floor. So and then we'll around and what have you. And I remember sort of picking up some bits of calico at the end, silks and, and, and sequins and what have you and, and decided that I was going to make a patch then.
::Jonathan Blake
Bless him, Nigel. UPS and dice.
::Dan Hall
And you'd been on an extraordinary journey together.
::Jonathan Blake
Yeah, almost 38 years. And. And what was fabulous was that that, my friend Roxy and and then another amazing embroiderer now called Susie Vicary. They both came round and helped me making Nigel's patch because it's important that you no one speaks their names. They are not forgotten.
::Dan Hall
So we're in the 20 tens now, and many people, many HIV positive people like you are on combination therapy. And then the results of a study come in. When was that again?
::Jonathan Blake
2015. And they are now at the Paris conference, having done this extraordinary study with 100,000 serio discordant couples. So one person had HIV and the other person didn't. And out of that trial of 100,000 people, only one person turned from being negative to positive. And then it was found out that actually they had sex on the side with someone else, so they may have caught it from the other person, not from that part.
::Jonathan Blake
So they could then say that that that if you were on effective medication as an HIV positive person, one could not pass or infect another person. And psychologically, what that does to you that I can now have unprotected sex, I know that I am not going to affect somebody is fantastic. That was just such, an extraordinary kind of, yeah.
::Jonathan Blake
I mean, it just said gave me permission. You know, I could have the sex that I wanted, I needed.
::Dan Hall
And how long had it had been, realistically, since you had last had the sex that you wanted and needed? Oh, God.
::Jonathan Blake
osis. So since before October: ::Dan Hall
I think a lot of the result of that situation is that we need to change our language, because I look at apps like a grinder and scruff, and I look at our conversations and we talk about HIV negative, we talk about HIV positive. You know, why do people want to know if you you're to repulsive. Oh, so it's to know if I'm going to catch HIV.
::Dan Hall
But if that person has a really low viral load and they're undetectable, it can't be passed on.
::Jonathan Blake
Yeah. You know.
::Dan Hall
And so surely the conversation we should be having is are you undetectable? So I'm undetectable because I'm HIV negative. You're undetectable because you're on meds. So actually in terms of health risk to other people, we are exactly the same.
::Jonathan Blake
I think that's true. I used to come out as HIV positive because I didn't want to be in a situation where someone suddenly said, but you didn't tell me you were. And the amount of grief that I would get, abuse that I would get from people, they use this awful expression clean. I loathe it, you know, we're talking about sex.
::Dan Hall
When someone says that to you, how does it make you feel?
::Jonathan Blake
It makes me angry because, you know, as far as they're concerned, you know, I'm a lesser mortal because I have HIV. I mean, I didn't choose it, but it happened.
::Dan Hall
Well, I remember reading somewhere an article that said, of course HIV isn't passed on by people. HIV positive is passed on by people who think that HIV negative.
::Jonathan Blake
That's right. Because if you know your status, you can be protecting yourself and you protect others. If you don't know what your status is, how can you possibly do that?
::Dan Hall
What are your biggest concerns about being a long term survivor of HIV? Entering into your older years?
::Jonathan Blake
The most important thing is, if I have to go into a care home, how will I be treated? And it's going to be difficult enough because I ain't going back in the closet. I can't go back in the closet and I won't go back in the closet.
::Jonathan Blake
And I've been incredibly fortunate. The fact that I live within a housing cooperative. So as I get older, hopefully there will be people around within my community and within the co-op who will be able to get help and and give me support. And of course, we never thought we would age. And there are actually a lot of people who knew they were going to die.
::Jonathan Blake
And so they just spent their money. And then, you know, because of the medication and the cost of the medication and the tightness of funds, what happened was that fewer and fewer Drop-In centres, places where you could go to get information and feel safe. They began to disappear. The London lighthouse no longer exists.
::Jonathan Blake
The garden, you know, which is sacred space because so many people's ashes are there that exists. You could look out from the fifth floor, where the hospice area was and see the garden, or if you were down stairs, you would go through the canteen and you could sit out in the garden so it was just this really beautiful, beautiful, sort of fun space.
::Jonathan Blake
And of course, you know, so many people either died in the lighthouse or were treated in the lighthouse, but the building was was sold off and it is now the Museum of Romance. I mean, I can't believe that because it was a very special place for me personally. If it wasn't for the National Health Service, I do not believe that I would still be there.
::Dan Hall
What is the alternative? What are the what's the situation like in other countries?
::Jonathan Blake
Well, in other countries they have to pay, don't they? You know, in the states you have to buy your medication, you have to kind of pay for insurance. So, you know, it's all about it's about cost. Yes. You know, the NHS is paid. It's not that it's free, but it's free at the point of delivery. So they don't turn to me and say, what can you afford this.
::Dan Hall
Now, Jonathan, I want to take us to that garden that you spoke about, the garden that had been in the grounds of the London Lighthouse, and ask you to do an audio version of the Aids quilt. Who would you like to remember today?
::Jonathan Blake
as my stomping ground. And in: ::Jonathan Blake
And then I remember that Nigel and I were going off on a, holiday. We were going on a cycling holiday to to France, and a neighbour came across the garden and knocked on my door and said, your friend George Hudson is in the London lighthouse. He's at death's door. You should go and see him. He was up on the fifth floor and he had lymphoma and was not supposed to to survive, but he survived.
::Jonathan Blake
And, you know, and little by little, I kind of encouraged him. And he came out and he started being, an HIV advocate. And there was a wonderful woman called Lulu who was a great friend of George. And Lulu tried to ring him and couldn't get hold of him, and then rang a neighbour of his, and the neighbour couldn't get in and then the police had come, and they managed to to lift the chain that was across the door, and they went in and.
::Jonathan Blake
st of April,: ::Jonathan Blake
I've been medically retired, so I've got to find ways of filling my time. So I go and and volunteer at the Landmark, this HIV Drop-In centre, and I, I like being on reception. I like to be the person that welcomes people, you know, to the place to make them feel at ease, uncomfortable and that they're amongst friends and just, you know, welcomed them.
::Dan Hall
You have had a truly unique life, you know, and it's fantastic that you are using the experience that you had of that life in order to spread that information. Thank you. Because so many people didn't, so many people aren't here to speak.
::Jonathan Blake
Absolutely. I'm saying that, you know. When you say that that that.
::Jonathan Blake
Oh. That hits me. You know, because there are so many extraordinary and and amazing people, you know, that I knew personally who didn't have the chance or the opportunities, all that, for whatever reason, the virus sort of got them. I mean, and I don't understand why, you know, I'm still here. You know, maybe my parents gave me, an extraordinary set of genes.
::Jonathan Blake
I don't know.
::Jonathan Blake
I think that when people get terminal diagnoses, if they don't go under, I think that for the most part, you just live in the present. Have a few things to look forward to, but that's like a carrot.
::Dan Hall
So, Jonathan, tell me, what is life like now?
::Jonathan Blake
igel died. Nigel died. And in: ::Jonathan Blake
I mean, what is, is, is so wonderful about that is that I feel that our community, all of us, are safe in their hands. And that's that is something very special.
::Dan Hall
And what is your postcard to the world to close our interview off, which I've got to say has been an absolute delight.
::Jonathan Blake
I think my parting message to the world is. Be brave, get tested, know your status.
::Jonathan Blake
tree. So Nigel and I in April: ::Jonathan Blake
It is the most wonderful shade. I mean, it depends on it curves. And, you know, the squirrels come along and that's wonderful.
::Dan Hall
Jonathan, it's been an absolute honour to to speak with you.
::Jonathan Blake
Oh bless you. Oh it's marvellous. I'm, I'm kind of slightly overwhelmed. But. Yeah. And, and and personally, I feel remarkably honoured when you tell me that this is your first one.