Love, Loss & Life: Real Stories from the AIDS Pandemic: Adrienne Seed

This podcast represents just one example of many stories from the full form Audiobook "Love, Loss & Life" published by the National HIV Story Trust.

 Although her partner died of AIDS-related illness in 1998, Adrienne was not diagnosed herself until four years later, by which time she had a viral load of over 2 million. She found being a woman with HIV a lonely experience at first, and hid her status from her son for many years. 

This podcast series features stories taken from our first book, a collection of essays, reflections, and testimonies also entitled ‘Love, Loss & Life’ which you can buy here.

An audiobook is also available here.

Visit the National HIV Story Trust website

Transcript

Elexi Walker: 0:07

Love, Loss & Life Real Stories from the AIDS Pandemic. This is Adrienne Seeds's story. Read by Elexi Walker, with an introduction by Anita Dobson.

Anita Dobson: 0:34

Adrienne Seed is an artist, writer and HIV campaigner, diagnosed with HIV/AIDS in 2002. She trained at St. Martin's Art College and spent many years living around the Mediterranean painting, sculpting and running dance classes. After diagnosis, she returned to Lancashire where she was born and trained as a counsellor to equip herself with the skills to help others in her situation. For over 10 years, she has run an HIV website called HiVine and a support group in Blackburn for women and men with HIV. Although her partner died of AIDS related illness in 1998, Adrienne was not diagnosed herself until four years later, by which time she had a viral load of over 2 million. She found being a woman with HIV, a lonely experience at first and hid her status from her son for many years.

Elexi Walker: 1:39

It was 1998 when my partner died of liver cancer, or so I thought. He and I had been sailing around the Mediterranean together and I was devastated when he died. Although I didn't know it at the time, very early in our relationship, he'd had a brief fling with a Russian woman who must have been carrying the virus. It wasn't long after his death, that I started to feel unwell myself. It started with the kind of illness you get when you are rundown. Oral thrush, persistent cough, then rashes all over my body. I'd been working in Italy on some marble sculptures. And suddenly my hands were so weak. I found I couldn't lift them. Over the next four years, I became sicker and sicker. The family doctor kept doing tests but could find nothing obvious wrong. Then I went down with pneumonia while I was in Ibiza, and was in hospital for two weeks. Although I had blood tests there every day, I was a straight, middle aged white woman. So no one thought to look for HIV. It was only when I consulted a homoeopathic doctor on the island that he suspected immediately what was wrong. He sent off another blood test and broke the news to me three days later. When I came back to England, to have the blood results reconfirmed at Blackburn hospital. It turned out my viral load was over 2 million. It was a terrible shock. Everything changes. You have to become a new person to deal with it. I remember saying to my mother,"mum, I'm HIV positive". It was the first time I said those words. And she looked at me and said, "Don't worry, love, we can cope with this". Though it wasn't that easy. For the first couple of years, I carried on getting one illness after another, including shingles so badly, the hospital photographed them for their archives. My mother was elderly and arthritic. So at one stage, we weren't sure who was caring for whom. If I had been diagnosed earlier, we wouldn't have had to go through that. I was never angry with my partner for having passed the virus to me. We're all human. And he didn't know he was carrying it. But the medication I took made me hallucinate. I'd feel my feet turn into forks. Or once I was a Mississippi riverboat, my hands in huge boxing gloves. That was hard. And I only persevered by thinking of the pills as my little soldiers marching through my body to kill the virus. The trippiness crept into my paintings, which have always been colourful and surrealistic. One, called 'The Last Supper', was my first attempt to portray how I felt. It shows me as Alice in Wonderland, alone at a table laid with empty bowls and enormous pills, while in the background, men are carrying me away on a bier. Another shows a woman balancing on a tightrope, trying to reach the other side. I didn't know any women who were HIV positive and felt entirely on my own. The only place I knew to go for support was George House Trust in Manchester. I found a group of gay men outside smoking. And when I sat down to join them, one put his arm around me and said, "welcome to the club, love". It was so wonderful to be touched. Until then I'd been paranoid about letting anyone near me. I didn't feel able to tell my son,. He was in his 20s. It was only when I went for counselling after the death of my mother, that I confessed how worried I was about accidentally infecting him. Should I let him know? And the counsellor, of course, didn't tell me what to do. But gently put it to me that, some would say, Ben had a right to know. The idea began to churn in my brain until one day, Ben and I were having an argument, and I blurted out, "stop it. You're making me ill". He asked what was wrong with me. So I told him, and a huge weight lifted from my shoulders. No one yet knows how HIV will affect people in their later years. What will it be like to be HIV positive in an old people's home? Because there is still a stigma attached. I won a free ticket for a facial massage a few years ago. But when I turned up at the beauticians, she refused to treat me unless she wore rubber gloves. I tried to explain that my viral load is now undetectable and has been for years. So there is no way I can pass the virus on. But she insisted her insurance wouldn't allow it. I went home and cried, because once again, I was the great untouchable. And that's not the only example. I started going for walks with a male friend. And when we came back after walking our dogs one day, he found an unopened condom placed on the bonnet of his car, which I can only presume was one of my neighbours, deciding to warn him that if he was thinking of starting a relationship with me, he'd better be careful. Sadly, many women today still don't believe HIV has anything to do with them. It's still thought of as a gay man's disease. And I don't think it is widely understood that roughly half the people infected with HIV throughout the world are women. Now, there are more networks. So being diagnosed as a woman with HIV doesn't have to be the lonely experience I felt it was. It can be empowering. But though I can honestly say a lot of good things have come out of the last 19 years, it still doesn't make up for what HIV took from me. Now my direction is always dictated by this thing inside me. It tried to kill me and failed, but made me reliant on pills. It took the other me, the one that existed before the illness, when the world was full of possibility. Thank you for listening to this story from Love, Loss & Life. A collection of stories reflecting on 40 years of the AIDS pandemic in the 80s and 90s. To find out more about The National HIV Story Trust, visit NHST.org.uk. The moral rights of the author has been asserted. Text copyright, NHST 2021. Production copyright, NHST 2022