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Tall Ken in his own words - 1993
“I was diagnosed by a doctor who did the test without telling me. It was about 8 or 9 years back. I’ve lost touch with exactly when. I know it was June but that’s all I can remember. I had to decide whether or not to tell my mum and dad. I felt that in the end it would be more of a shock if anything were to happen to me and they found out that way. So, I did tell them. My mum had guessed something was wrong. She said, “you’ve got it haven’t you?” and the next thing I heard was the phone smashing against the wall, and her screaming down the phone “He’s got it! He’s got it!” Ever since then I’ve had a lot of support from my family. We were told not to talk about it because of the way the press was handling it then, but I decided to be open about it and tell everyone right from the start. I wasn’t rejected by anyone, so I was lucky. I do get bouts of depression now & again, but instead of letting AIDS and HIV suffocate me, I suffocate it. Most people who were diagnosed at the same time as me are gone now. When Open Door started, there were about ten of us. I think I’m the only one of them left now. It does make you think that the list is getting shorter and that your name is getting nearer the top. When I was diagnosed all those years ago, a group of us just used to meet in someone’s room. I’ve met a lot of people that I wouldn’t have met otherwise if life had been…normal.
When I had pneumonia and I was bored in hospital someone suggested I do some needlework. I thought about it and decided to embroider a cloth with people’s name on it. That was about four years ago. Now there are 120 or 130 names on it, all people who’ve passed through Open Door at some time. I was classed as a professional funeral goer because I went to nearly all of them, but it’s my way of saying goodbye to friends. I did get to the stage where I thought I couldn’t cry anymore, but then you find that some are really hard. But some have been spiritually uplifting, because nowadays not everyone’s wearing black., quite often everyone wears bright colours. At one of them I went to, we all let off coloured balloons drifting off to heaven. Sometimes I get shaky when I go to funerals, like one last year. I went to someone’s funeral who was called Ken, and it kept going through my mind that it was like my own funeral. It was a strange experience. Sometimes I’m at a funeral and I think back to other people I’ve known…perhaps I hadn’t been able to let go at their funeral so I do at someone else’s. Most of them are younger than me, and often I feel guilty; why am I still going when they have gone? I’ve been told not to think that but I still do. There were three in one day once. It seems to go in cycles. That does get you down a bit.
Over the years I’ve been beaten up four times. Last night I was followed home by a group of men who were singing to the tune of Rod Stewart’s Sailing, “You are dying, you are dying, you are dying, but we don’t care.” I think I’ll write to the Argus about it.”