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What would you do if you were told that you have a life-changing illness like HIV and only two weeks to live? Run around, scream and shout and tell the world that it’s so unfair? Or don sackcloth and ashes and join a silent order, forever in penance for your wickedness?

Everyone is different, and if you’re reading this as a HIV+ person and you think, “Oh yes, I did that!” then good on you. As they say, it’s not what happens to you in life but how you look at it that counts and if yelling to the gods was your approach, so be it.

My own reaction is probably rather underwhelming, at least in the context of what is meant to be a dramatic story. I just went to bed and slept. I was so ill and so tired that anything else would have been a waste of energy. Maybe I just didn’t care anymore and in a way I was relieved that, finally, someone had told me for definite what was wrong with me and that I wasn’t going mad.

I remember that first weekend as a mixture of relief and fear. “I’m going to die in two weeks,” I thought. Most inconvenient and most regrettable too. How could I have been so stupid? How on earth did I manage to get HIV? I’d never slept around and neither, as far as I knew, had my previous partner or my current one, Richard. But here I was, a man in his 40s in a stable partnership, with a decent job and a pleasant home life. What on earth was I doing with HIV? The whole thing was unfathomable.

Dealing with guilt

I also felt guilt – a whole heap of guilt for the way Richard had taken on the task of telling me. Somehow, he’d persuaded the specialist, against all medical protocol, to tell him my diagnosis so that he could pass it on to me. I felt terrible that he was ever put in that position. That, truthfully, is my biggest regret of all. The man I love having to tell his partner that he faced, at best, an uncertain future. I don’t think I could have done that. Kudos to him that he found the strength to tell me with love and understanding, while my mother and brother were having coffee in the next room, unaware (as was I at the point) how dramatically life was about to change for all of us.

I was desperately worried for Richard. At that time he hadn’t been tested for HIV and he hadn’t seemed unwell. But you can have HIV without feeling unwell. The thought that I might have infected him was mind-blowingly horrifying. Fortunately, he never lost his cool for a moment and focused all his attention on me. Again, the greatest love and respect to him for being so measured while in the eye of the storm.

Quickly, the practicalities kicked in. I wanted to be cremated, not buried. I didn’t want a religious ceremony. Oh and no flowers: such a waste. But what would we tell people? In a way, I didn’t care so much about it at that stage. If I died soon, at least people would know that I wasn’t a hypochondriac after all. The tiredness, the under-performance at work, the dizzy spells, the head pains, the confusion; I sometimes wondered whether everyone thought I was just making all this up for attention. Well, now they wouldn’t. But did I really want my epitaph to be “Poor old Roland Chesters – he died of AIDS, you know”?

Ah, the ‘A’ word. At the beginning, no-one even mentioned it. Officially, I was seriously ill with a HIV-related condition. The big ‘A’ wasn’t breathed, at least not in my presence. So yes, I did have AIDS, of that there is no doubt. I was also way down on the scale of what is treatable or even survivable, which is why I was only given two more weeks to live. Much later on my journey I asked my specialist about it and she replied in the affirmative. “Yes,” she said, “it was AIDS and you were lucky to survive. But we don’t tell people that.”

My guiding light

A few days later, despite my extremely serious state of health, was when my recovery began. I was assigned to Dean Thomson, a specialist HIV community nurse, who would administer my drug treatment and become my guiding light. “Don’t worry,” he said when we first met, “we’re not going to let you die.” I probably cried at that, and whenever I think about it now I have the same reaction. He was as good as his word. Richard later told me that he asked to see Dean privately, separately from me, so that he could get a clearer idea of what the real prognosis was. I admire his courage.

In my book Dean describes his method of working and his approach to me as his patient, but suffice it to say that for many months he was my knight in shining leathers. On a near-daily basis he turned up on his motorbike at our flat, with my cocktail of medication. The neighbours must have wondered what was going on!

Whatever it was, it worked and I am here to tell the tale and to be eternally grateful for the support of Dean, Richard and everyone else who has stood by me and helped me to live the life that I now live.

Who is your guiding light? Who do you have around to support you with whatever you are going through? As well as friends and family, there are professionals and organisations that can help you, whatever you’re going through. If you need someone to talk to, a shoulder to cry on or someone to point you towards the best support for you, please do get in touch and I’ll see what I can do to help you to find your guiding light. Click here to email me or call me on 07752 518 925.

One Comment

  • Simon Horvat-Marcovic says:

    Well My guiding light isn’t one person, but a wonderful group of medical professionals and a number of supporting charities, that have been there for me on my journey.

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