Compilation Special: Still Here

:: 00:03:23

Chris Smith

I wouldn't have dreamed that, I'd be alive 38 years later. Let alone, having, done a lot of political and public service life and, now being chancellor of the University of Cambridge, I wouldn't have dreamed it was possible. But when they told me I was HIV positive, this idea, the results are back, and we're sorry to tell you that you are HIV positive.

:: 00:41:01

Matthew Hodson

And I was told. Yeah, in a very cheerful. You've got about 20 years to live.

:: 00:49:14

Alexander Cheves

You know it. There's always going to be a really good meal right around the corner or a really good hook up, you know, next weekend I choose to stick around for those little joy moments.

:: 01:06:12

Diego Agurto Beroiza

I want to say that we should be more concerned about the human rights in this moment. I obviously, I want to say about the human rights of people living with it because I'm part of that community. But, all the human rights in this moment are in danger.

:: 01:31:07

Nikolaj Tange Lange

Once I got to that point where I was no longer afraid and at the same time tested positive and here.

:: 01:37:05

Nikolaj Tange Lange

And I'm like, I'm not sure if if I tested positive because I stopped being afraid or if I stopped being afraid because I tested positive.

:: 01:47:13

Dan Hall

Welcome to the final of these special compilation episodes, featuring highlights from series one and two of HIV. The morning after. It isn't long now until series three drops next month. This episode is titled Still Here. Do keep listening at the end for an exclusive clip from series three.

:: 02:11:07

Dan Hall

years. In: 1984

:: 02:44:11

Chris Smith

It certainly was an oh shit moment. I can remember the day that I was diagnosed. I received the news in the morning. That evening I was, in the division lobby in the House of Commons, and I can remember, going up to the chief whip, and saying, is it all right if I go home now?

:: 03:16:03

Chris Smith

Because I have just had some rather bad medical news. It was a moment when I just wanted to go home and, bury myself in the bedclothes with.

:: 03:37:09

Chris Smith

The very visible signs that some people had. And it appeared in, lots of movies, especially, movies like Philadelphia that suddenly, it was the purple lesion that, identified the fact that the hero had, had Aids. Fortunately, my, Kaposi's sarcoma was, on bits of my body that weren't visible to the public.

:: 04:13:05

Chris Smith

So I never had, purple lesions on my face, for example. You just hoped that it wouldn't spread, elsewhere around your body.

:: 04:30:23

Chris Smith

The, prescribed alpha interferon for me. This was a really, really horrible drug. You had to inject it, and, my partner at the time used to, do the injection for 24 hours. You felt absolutely rotten. You felt as if you had very, very bad flu. And then for 24 hours, you felt normal, and then you had to have another injection.

:: 05:08:14

Dan Hall

It must have been very difficult, though, dealing with those side effects whilst also having to have a very public job.

:: 05:15:05

Chris Smith

It was it was the most ghastly drug and all the time I was, out and about doing things as a political figure. It was quite tough in those days.

:: 05:33:23

Chris Smith

In the aftermath of Nelson Mandela having made a speech, at his son's funeral, his son had died of Aids. And, Nelson Mandela made this, really, powerful speech about how we must stop hiding this. We must be open about it. We must talk about it. We must bring it out into the open, because that is the only way in which we will defeat this disease.

:: 06:07:10

Chris Smith

And, I just thought, well, perhaps, this is the time to do it. And I phoned the Sunday Times and I said, I'm ready to run with the story. They literally held the front page, and, they made a really big splash about it. They covered it, I have to say. Really? Well. And I was trying to make two points.

:: 06:36:12

Chris Smith

One was I have been able to live with HIV. Do a pretty full on job for the, last 20 years or so and, the second thing was to say, in a perverse kind of way, I've been lucky because I've had HIV in a country with a national health service, with the medical responses, with doctors who know about to, this disease, with the possibility of access to that, antiretroviral medication.

:: 07:19:08

Chris Smith

And, let's remember, there are thousands of people around the rest of the world who don't have those facilities or that knowledge or that access to medication. And I walked into my parliamentary office on the Monday morning, and there was a little note on my desk, please ring Mr. Mandela with a telephone number. And I dialled the number and they're picking up the phone at the other end was Nelson Mandela, who said, I just wanted to say thank you.

:: 08:05:04

Chris Smith

What you've done has made a real difference.

:: 08:14:11

Dan Hall

In their.

:: 08:20:01

Dan Hall

amelessly. But we join him in: 1996

:: 08:42:15

Matthew Hodson

I thought if someone told me that I was HIV positive, now I think I would just kill myself. And that's why I didn't test, because there was there was no effective treatment. So I thought, how is my life better if I know? And I just didn't think that it would be. But when they told me I was HIV positive, this idea, the results are back, and we're sorry to tell you that you are HIV positive.

:: 09:20:16

Matthew Hodson

And I was told. Yeah, in a very cheerful, you've got about 20 years to live. I remember those words and they just echoed in my head for the days and days afterwards, I would sit on the London Underground, and all I could hear was those words. And I thought that other people, the people sitting opposite me on the carriage, could hear them too.

:: 09:43:15

Matthew Hodson

I thought everyone was looking at me thinking, there's a guy with HIV. 20 years was such a luxury compared to my friends who had died. So, you know, I couldn't resent that. And, you know, when you're 30, 50 feels like a long way away. But it did profoundly change my life because I then felt.

:: 10:13:15

Matthew Hodson

You've got a limited period to get things done. Now, what do you want to do with these precious years?

:: 10:24:21

Dan Hall

Then in: 1996

:: 10:33:18

Matthew Hodson

ds, mortality, you know, from: 1996

:: 11:06:06

Matthew Hodson

And it changes. It changes in highly developed in Western countries, high income countries, first, it was very slow to actually reach people in subsaharan Africa, which obviously has one of the densest HIV epidemics. Globally. But it is still wonderful to see those graphs and see how Aids deaths, which had just been climbing and climbing and climbing, the two years drop, started dropping dramatically.

:: 11:36:19

Matthew Hodson

We.

:: 11:41:21

Matthew Hodson

Original article. Press send. And that moment I press send, I was like, well, you know, it's like jumping off a high board, you know, I've done it now. I can't take it back. Now. Let's just make sure I enter the water with grace.

:: 11:55:08

Dan Hall

And what year was this?

:: 11:57:02

Matthew Hodson

Well, so this is,: 2012

:: 12:01:03

Dan Hall

The year of the London Olympics.

:: 12:03:04

Matthew Hodson

Yes. Well, that's how I can remember it, because I actually the article which I wrote about being open about my HIV status, I can't remember exactly how I did it, but I did tie it into the London Olympics somehow. So that's I always remembered that was that was the year. But the more I talked about living with HIV, and the more I kind of talked about it in a way which wasn't, oh, I've got something sad to say, but actually.

:: 12:31:07

Matthew Hodson

Oh, I've got something to say. The more I realised I've been carrying this, this secret as a burden and that it had slowed me down, but it it had meant that I was guarding myself. I was watching myself because this was this terrible thing. And as soon as I said, maybe it's not terrible, maybe it's okay, maybe it's fine, maybe I don't.

:: 13:01:20

Matthew Hodson

It's not something I need to apologise or can embarrassed about.

:: 13:15:24

Dan Hall

Today, Alexander Cheves is a writer and essayist living in Berlin, and he's author of the erotic memoir My Love Is a Beast. He grew up on a 500 acre farm in the evangelical South, and his parents were missionaries. His only information about HIV came through Christian content filters on a dial up computer, filters that blocked cultural gay content.

:: 13:40:15

Dan Hall

him in Savannah, Georgia, in: 2013

:: 13:54:10

Alexander Cheves

You know, by that point, I had 21 years. I have 21 years of data to show that there also will be moments of joy. There will be great food, there will be great sex. There will be great mornings. Great. There will be great stuff to. So I either choose nothing or the possibility of wonder. My image of gay life was wrapped up in gay death, primarily because of my dad.

:: 14:19:12

Alexander Cheves

In every conversation that we had about sexuality, before you ever even came out to him, he made it clear that choosing this quote unquote lifestyle meant choosing death. And I believed him. And he was my dad. You know, he was a doctor. And so and so I remember at 16, choosing to come out under the assumption that doing so meant a young death.

:: 14:51:24

Alexander Cheves

And then when I got back after summer break, one of my friends who had just come out to me himself, he he didn't know where to go. And he had him he had an sti scare. And by that point, I had been in and out of the student clinic multiple times. And so I knew exactly where to go.

:: 15:09:18

Alexander Cheves

And, and he wanted somebody to go with them to get tested. And a few days later they called him and saying everything was fine. And so he said, Alex, have they called you yet? And I said, well, no, I'm sure they will soon. And then the next morning, they called me and, you know, they had told my friends results to him over the phone.

:: 15:32:04

Alexander Cheves

And then so I said, look, you told my friend his results over the phone, so why can't you tell me mine? And they said, we're sorry. We can't. You got to come in.

:: 15:42:08

Dan Hall

And how did that make you feel?

:: 15:45:15

Alexander Cheves

Oof! Well, I mean, you've read the book, In the six months after my diagnosis were the six months of my life that were the hardest to survive, I went from being somebody who was a confident young kid in college to having no sex partners, and nobody who had touched me in this before. Grinder had a feature where you could disclose your status on your profile.

:: 16:14:23

Alexander Cheves

You you actually had to message people and tell them. And nobody wanted to have sex with an HIV positive kid.

:: 16:22:22

Dan Hall

Can you tell me what is that like.

:: 16:25:23

Dan Hall

When.

:: 16:26:19

Dan Hall

Nobody wants to touch you.

:: 16:29:06

Alexander Cheves

You have to find the ones who are more familiar with HIV. And so almost overnight, all my sex partners ended up being ten, 20 years older men who didn't need this. Full disclosure, this education. That was the first time in my life that I realised that I needed my elders. I need for sex, for education, for community. I needed, you know, nowadays we would say daddies, but I just needed older gay men.

:: 16:53:16

Alexander Cheves

I didn't need my peers. I didn't need the guys at the bar. I actually needed gay older friends. And these are the men that saved my life.

:: 17:07:19

Dan Hall

And so what.

:: 17:08:20

Dan Hall

would

:: 17:09:18

Dan Hall

this Alexander Reves speaking right now, say to that Alexander Reves, who is almost on autopilot, driving to the doctors to get a result that they already pretty much know what it's going to be of.

:: 17:26:06

Alexander Cheves

My God.

:: 17:30:00

Alexander Cheves

Well, I would tell him that it's going to be really, really hard. It's going to be awful. And I mean, it's going to be so awful that, you know, he's going to barely survive it. But but he will he will suffer. That's life. But that's, you know, that's life that's growing up. We do suffer and.

:: 17:56:19

Alexander Cheves

Life is this miracle spot between great joy and great suffering. And, and, you know, I was I was really suicidal during those six months after I tested positive and even a little bit longer. And I'm really grateful for that period, too. You know, I've, I've, I've, I've battled depression on and off my whole life. But the very worst depressive episode was after I tested positive and I was so depressed and such a dark place, so suicidal, that I think I reached that mental place that, you know, only other people with very severe depression have ever reached.

:: 18:31:04

Alexander Cheves

And that is the very interesting place at which you have no emotional connectivity to life. And it just becomes something you can look at kind of coolly and coldly. It's something that you can weigh as if you would weigh buying this shirt or that shirt. Right. And when I reach that point where the pendulum of living and dying could go either way, when I was very when I felt very neutral, I remember looking at life objectively and saying or thinking, okay, do I want this?

:: 19:05:04

Alexander Cheves

Do I want to continue doing this? If I choose to continue doing it, I will suffer more, that's all. But guaranteed life is suffering. There are going to be moments of pain. But I have, you know, by that point I had 21 years. I have 21 years of data to show that there also will be moments of joy, there will be great food, there will be great sex, there will be great mornings, great.

:: 19:27:10

Alexander Cheves

There will be great stuff to. So I either choose nothing or the possibility of wonder. And looking at life so coldly and so neutrally as just a collection of experiences, positive and negative. There are there always going to be more positive experiences and, and, in my in my darkest moments, I've gone back to the clarity of that choice and reminded myself that, you know what?

:: 20:01:05

Alexander Cheves

There's always going to be a really good meal right around the corner or a really good hook up. You know, next weekend I choose to stick around for those little joy moments.

:: 20:23:22

Dan Hall

Diego Agurto Beroiza is from Chile and grew up under former dictator Augusto Pinochet. Diego has been an HIV activist long before he himself tested positive. And we join him in the conversation. Well, I've just asked him about life under Pinochet.

:: 20:44:13

Diego Agurto Beroiza

because the zero case, was in: 1984

:: 21:05:01

Dan Hall

To help a British audience understand a little bit better. When you got your own diagnosis, how did that make you feel, considering the history that you knew about in Chile?

:: 21:16:07

Diego Agurto Beroiza

I was activist before my diagnosis, so I had the knowledge, I thought, until the day I received the, the diagnosis. And that changed my life because I had the feel that I don't know nothing about Aids and HIV, but was weird because I was supporting people. Really. TB? I think the first idea about the far right, why I'm concerned about the future is because they are using all the time with our communities, the idea of the guilt.

:: 21:56:20

Diego Agurto Beroiza

We are guilty. Leaving the people living with HIV is our responsibility. We are guilty. So this Catholic priest, in an idea of the hey, we need to pay something, you know, the idea of the sin we are sinner. In the transaction, the translation sorry, is in laws. He's like, I mean, in in Argentina, he cut the the money for prep, and now he's using this idea that the people living with TB should pay their own treatment.

:: 22:34:16

Diego Agurto Beroiza

We know that they value the cost of a one. Treatment for one month is impossible to pay for all the people in concert because Trump is cutting funding, Milan is cutting funding. I know that Meloni in Italy, she want to cut some funding in its, health system related to HIV and prep in, in, in gonorrhoea. So now till in, in in Peru and Bolivia we are close again to lost our right because they think that we are responsible of our condition.

:: 23:12:02

Diego Agurto Beroiza

So we should pay. No just in a social way. You know, it's not that, social punishment is the punishment. The translation of this punishment is we should pay it with our money. I want to say that we should be more concerned about the human rights in this moment. I obviously, I want to say about the human rights of people living with HIV because I'm part of that community.

:: 23:43:08

Diego Agurto Beroiza

But, all the human rights in this moment are in danger. We need to be together without countries, without borders, without nothing, just together, fighting, reading about what happened in the war, reading newspaper, talking about this in all the spaces, in the work, in your dubbing the unis, in, podcast, in a WhatsApp group with your family, sharing everything because the genocide is happening now and tomorrow could be another country, could tomorrow could be our houses.

:: 24:15:20

Diego Agurto Beroiza

And this idea of now I'm safe, maybe tomorrow. No.

:: 24:29:01

Dan Hall

nding back a few years to the: 2000

:: 24:50:22

Nikolaj Tange Lange

Yeah, I mean, there was like a discrepancy between, like, the narrative that had like, been, internalised in me. And then what I experienced and saw that that slowly had to, like, come to terms with each other, I guess also like, I mean, I grew up in Denmark where we had, like, extremely efficient, HIV awareness campaigns throughout the 80s and 90s.

:: 25:13:03

Nikolaj Tange Lange

Like, there was like, you know, when I, when I was came home from school and turned on like, afternoon, youth programs on TV, there would be like HIV awareness ads in between the programs. So we were extremely well informed. And this thing of like, use a condom or you will get a virus that will kill you.

:: 25:34:08

Nikolaj Tange Lange

The idea of not using a condom was not even like an like an option. Once I got to that point where I was no longer afraid and at the same time tested positive, and here again, I'm like, I'm not sure if if I tested positive because I stopped being afraid, or if I stopped being afraid because I tested positive, because it just kind of happened at the same time.

:: 25:59:10

Dan Hall

That's very interesting. And that's fascinating, isn't it, that the two are almost blurred in your mind?

:: 26:05:06

Nikolaj Tange Lange

Yeah, yeah. I also remember, like when Mikki Blanco came out to say to be positive, I was also like, oh, why does it always have to be this, like dramatic narrative around it like it was, but it was also like, well, it's because you're talking to, straight music magazine or whatever. I was like, you know, can't we just you're so brave.

:: 26:23:07

Dan Hall

That's always that's what is is it is so, so brave.

:: 26:27:03

Nikolaj Tange Lange

Yeah, exactly. It's time to get real. Or like Wednesday calls. Yeah.

:: 26:31:14

Dan Hall

So then, and I suspect I know what this answer might be. Nikolaj if you were to send as your. This your final question in this episode, if you were to send a postcard to the world, what would you write on it?

:: 26:43:02

Nikolaj Tange Lange

Okay. I would maybe say, yeah, when I look out at the queer community and I'm using here the term queer in the most inclusive sense possible, I see a lot of pain and trauma, and I also see a lot of joy and pleasure. And I do think that those two are connected to the pain and the pleasure.

:: 27:07:23

Nikolaj Tange Lange

So I hope that we can move forward, allowing space for the pain. I know it for how it has shaped us into the skilled and, resilient beings we are. And I also hope they will keep pushing together for more joy and for more pleasure. The Queer Manifesto says, every time we fuck, we win. And though I still believe that, I also still believe that there's a great resistance to be found in joy.

:: 27:41:10

Dan Hall

asking the context is the mid: 1980

:: 28:03:23

Mark S King

There was talk of this new drug and, AZT, and it was not available in the United States. It was not FDA approved, but you could get it in Tijuana. And Tijuana was a two hour drive or so from Los Angeles. And, myself and Leslie and Ron and Marcos would, get in the car and drive to Tijuana on a Friday.

:: 28:31:05

Mark S King

And as soon as we got to town, we split up and we went to all the pharmacies with with, some prescription, whether foraged or not. Maybe we had a, receptive doctor back in the US, but we we went to every pharmacy, and we bought it out of this drug, and we loaded it into the car and, packed it under the, spare tire in the truck.

:: 28:57:18

Mark S King

We were not very, you know, capable drug smugglers by any means. We could certainly have been caught. And I don't know what they what.

:: 29:05:23

Mark S King

What do you do?

:: 29:06:17

Mark S King

It's not heroin.

:: 29:07:18

Mark S King

It's is.

:: 29:08:16

Mark S King

It is that bad? I don't know, and then we would spend the weekend on the beach. We would rent a house, and we would get stoned, and we'd sit on the beach on or under fire and. And, and then Sunday drive back and we would stop in, in San Diego where there's a big day gay dance club there, the West Coast production company at the time.

:: 29:31:15

Mark S King

And we would stop there because it was just in time for their Sunday to dance their afternoon dance party. And I have very specific memory, being on that dance floor with my arms around Ron and Leslie and Marcos.

:: 29:54:19

Mark S King

You know, when you're young and you're on the dance floor and your arms are all around each other and you're in like a group, like a huddle, and you're jumping up and down and you're dancing to Gloria. It's just such a specific memory of dancing to Laura Branigan and and not caring about Aids, not thinking about the drugs in the car.

:: 30:18:00

Mark S King

It was wilful joy, wilful joy.

:: 30:39:03

Dan Hall

The trailer for a service free will drop on the 12th of June. The series itself begins with Mark asking on the 26th of June.

:: 30:50:16

Dan Hall

Thank you to Paul Leonidou at unstoppablemonsters.com for his wonderful theme tune, and to Moray Laing for his continued support. And a special additional thanks to Jim Vogiatzis for his continued editorial assistance making the series.

Do please rate and review the podcast. It hugely helps the algorithm stretch it to new audiences. And if you've got anything to say, drop me an email at HIVthemorningafter@gmail.com

:: 31:16:14

Dan Hall

I've been Dan Hall.