In our society we tend to expect not to have to face the likelihood of death until our 70s at least, but one group of people who are having to face the prospect of death at a relatively young age are those diagnosed as HIV-positive. Controversy surrounds the issue of whether those at risk of contracting the virus should have the blood test which might give them that death sentence. At the time of writing there is no clear evidence that any treatment can improve the prognosis, even if taken at an early stage, and opinion is divided on the likely effects of knowing you have the virus before any symptoms occur. Some believe that this enables the person to take good care of their general health and well-being, perhaps therefore improving the prognosis. Others feel that the diagnosis brings despair and depression and can create difficulties with relationships and employment. The Terrence Higgins Trust, a charitable organisation providing support for those with AIDS, produces literature on the subject. If you would like to pursue the issues involved in greater depth, their website is.
People react in their own way to the knowledge that they have the HIV virus. Here we present a brief extract from Jacqueline Hockings’ book Walking the Tightrope (1988), in which she talked to people who were diagnosed HIV-positive. Nick displays tremendous courage and manages to live his life positively in spite of or perhaps because of, his diagnosis. ‘I met Nick through my work at the Terrence Higgins Trust. He is 23, was diagnosed as HIV positive a year ago, when he was 22, after his first sexual encounter. He spends much of his time travelling around the country, talking to people about his experiences, and working in training groups.’
I took the test after my first relationship with a man. I'd just come back from France, where I had this relationship. A friend of mine and I decided to go along together for a test. It made it a lot easier, going with someone else. I received the results by letter on January 19th, 1987. Receiving the results by letter was not so good.
I thought I’d be a hero, and I thought I could cope with it, but I certainly couldn’t. My partner at that time was not infected and because I was, and because we didn’t actually love each other, we decided to split up. He was too young he couldn’t cope with it.
Being HIV-positive was difficult, it was horrible. When I received the news, I went into shock. I feel that I ceased to exist, everything ceased to be real. I wasn’t even part of things which were happening around me. People went by and said: ‘Hi’ and I said ‘Hi’, but it was only a very automatic response.
I came back from France feeling quite positive and trying to please my parents. I thought ‘Right, I’m really f*cked up in life with regards to my parents, it’s something to do with them and it’s something to do with me, but at least I can do my bit and get that sorted out’. I tried to do things to please them.
I started looking for a job, I started looking fanatically for what they termed as a real job, I wanted to please them. They thought my job in France wasn’t a real job.
I started looking for this job, going head over heels rushing up to London, looking for this elusive job. I don’t think I really wanted to do it, so I was quite glad and relieved, when I didn’t find this real job.
I fell ill during that period. I felt so ill that I wasn’t able to move properly, I had spots all over my body, I was out of breath, had very high temperatures.
All of a sudden all my feelings disappeared out of the window. Suddenly I wasn’t able to breathe anymore. I was on a drip, and suddenly, just very, very suddenly, that was it. I couldn’t breathe. I was out of my mind, so scared. I didn’t understand what was happening. I thought it was probably death on the way and got hold of Mum’s skirt and asked her to ask them …
I was on full oxygen at the time and I remember talking to my mother and father telling them I wanted to be cremated. My father said: ‘Don’t be stupid, you’re not going to die’. I got very frustrated with him, because of course I was going to die. It was obvious to them, it was obvious to me, that I was going to die, also to the doctors … they said to me that I had a 30 per cent chance of survival. My sense of humour seemed to get better at that point. I said: ‘At least that’s better than 20 per cent’. I think I’d read it somewhere, you know, the kind of things one might say on one’s death bed. I discussed my cremation, where I wanted my ashes scattered. That meant a lot to me.
I thought about my death. I feel very privileged to have thought about death. I used to think of myself, even now, as being immortal. We do certain things to our bodies, which shouldn’t be done, like me, during the HIV period. I seemed to be trying to cheat death. I drunk a lot, took quite a few drugs, skiied like a madman, because death was quite close anyway. I was cheating my immortality. I was trying to say to myself: ‘I am immortal’, by doing these things to my body.
One of the things that pulled me through was that I wasn’t ready to die. I really wanted to live, and now because I am living and I have been through that, I can appreciate life a lot more. I love life. I think it’s fabulous, the most important thing that has ever happened to me, to be alive. I often think I’m a living miracle here. Maybe I sound like a Bible basher here, but I do think that life is a miracle.
I am doing a lot, I feel worthwhile, I feel like I am a worthwhile human being. Sometimes I need other people to say that to me, because I regard myself as being a economic cripple, sexual cripple, a bit of a failure. Reliant on my parents, there is nothing much going for me …
Sometimes I view having AIDS as climbing mountains. I used to do a lot of mountaineering. There are a lot of mountains to climb. You climb over one mountain, and when you’re on the top of one mountain, you can see some more mountains. You get down into the valley and up to another mountain. You see some more. There are forever more mountains to climb.
(Please omit this activity if you wish.)
If it feels comfortable, ask yourself what is the nearest you have come to your own death. This might be a serious illness, a near-accident or something else. Note down any effect this has had, either in the short term or the long term, on the way you live your life and the way in which you view death.
Has it changed your relationships in any way?
Has it affected your view about what really matters in life?
Has it made any difference to your enjoyment of life?
Has it made you more or less fearful of death?
If you chose to do this activity you may find it has brought back uncomfortable memories you need to share with someone; on the other hand, it may have been an entirely positive experience.
You may feel you have never really been close to death. Or maybe you have but it makes little difference to you and you prefer not to think about it. On the other hand, you might want or need to remember the experience but find it difficult to discuss, because it’s hard to find the right words or because other people aren’t interested or, worse, regard your experience as pathological or frightening. This is, perhaps, most likely to occur if there are unusual aspects in your experience, as there were for this person:
As the pain reached its peak it suddenly stopped and I found myself suspended up under the ceiling. I could not see myself, there was some mist below and as I leaned over to try to see under my body I had the sensation that I would fall down. Although I couldn’t see my body I could nevertheless see everything in the room, like the telephone which was not visible from the bed, I could see quite clearly from my position above. I could also hear everything that was going on and the nurse who was still trying to get me to move my leg. Then I heard her say, ‘My God, she’s gone’.
(Grey, 1985,p. 37)
This ‘out-of-body’ experience is one aspect of what has come to be described as ‘near-death experiences’.