If you were given just two weeks to live how would you feel? What would you do? How do you prepare for the end? Who would you tell and how? It was this terrible position Roland Chesters found himself in in the late summer of 2006. He knew he was seriously ill but had no idea that he had both HIV and AIDS. Luckily Roland did not die. Expert medical help and his own determination not to give in saw him through. His life though, had changed for ever.
‘Ripples from the Edge of Life’ is Roland’s account of a life changing diagnosis and the impact it had not only on him but on those close to him. More than a memoir, Roland’s story is not unique; ripples spread outwards and this empowering collection gives voice to 14 others who have survived similar traumatic diagnoses. This book contains wisdom, hope humour and inspiration in equal measures. Is an essential read for anyone facing a life changing condition and for those who support and care for them.
Friday September 1, 2016
I stared out of the carriage window as the 17.53 pm from Waterloo rattled towards Surbiton, the grimy sprawl of south London rapidly giving way to the leafier parts of Surrey. I could almost set my watch to the time we passed certain landmarks; shops, offices, houses, stations, parks. It was all so familiar; so horribly, boringly familiar and I felt drained and exhausted with it all.
Thank goodness, then, that from tomorrow I had a two-week holiday in the Italian Lakes to look forward to. I knew that by the time I arrived home Richard, my partner, would have packed the bags, printed the tickets and unearthed the passports. All I had to do was turn up, which was just as well because I was capable of little else.
For months and months I’d felt unwell. Nausea, poor balance and coordination, loss of control over arm and leg movements, tetchiness, extreme exhaustion and incoherent speech were all part of my daily life. I’d had test after test, and scan after scan, with no clear diagnosis of what was wrong with me. Whatever it might be, it was tearing my body and mind apart – but what was it? No-one seemed to know. I just had to get on with it.
One of these appointments had been on the previous day, at the Kingston Hospital with a respiratory consultant, relating to a worrying series of nodules found on my lungs during a heart scan. Richard came with me and I introduced him as my partner. The specialist quickly disabused me of the idea that I might have lung cancer. I’d never been a smoker and it was thought, even before an MRI scan, that they were benign. As it turned out, they were
chickenpox scars from childhood, so at least cancer could be ruled out as a diagnosis for my on-going problems.
The doctor was a sympathetic man and recognised that we were a same-sex couple. He listened carefully as I described my symptoms. “It’s a puzzle,” he said, “and by your notes I can see that you’ve been tested for all sorts of things. Do you mind if I ask if you’ve ever been tested for HIV?” Momentarily I was taken aback. “No,” I said, “I’ve never been tested for that. I’ve never felt it necessary, to be honest.”
This was true. I’d never been what you might described as a ‘scene’ gay man, preferring an evening at the opera to a sweaty night in a club pumping out electro disco. I was openly gay, but I never wore it as a badge. My sexuality didn’t define me; it was just part of who I was, and it still is. I’d been single for some years before entering into two long-term monogamous relationships, one with Graham and the other with Richard that, by then, had lasted a decade. Richard and I volunteered for the Food Chain, delivering meals to isolated people with HIV, so I knew the impact it had on lives and the devastation it could cause. But I didn’t for a minute think that I was THAT closely associated with the disease.
“So would you be interested in taking a test?” the doctor asked.
“I’m not sure it’s going to prove anything,” I said, “but I’ve been tested for everything else and I still don’t know what the problem is. So let’s do the test. Test me for anything.”
So he did. It was such a simple matter that it hardly bears description here. Blood was taken, sent off somewhere, and that was it. During the course of the test I mentioned that Richard and I had booked a fortnight’s holiday to the Italian Lakes beginning on Saturday.
Picking up the results of the HIV test the following day was just another inconvenience in what was likely to be a busy Friday packing and preparing for Italy, so I told the specialist I’d collect them after the holiday.
The following day I crawled into work following the usual uncomfortable game of sardines on the Surbiton to Waterloo train. ‘Only one day to go,’ I kept telling myself, ‘only one more day to go.’ By the end of the day it was all over and I made my weary way home looking forward to two weeks’ break by the water and with the most stunning views of the surrounding mountains. If this didn’t sort me out, or at least give me some temporary respite, I didn’t know what would. Little did I know that Richard had already received the phone call that would explode a bomb in both our lives.
I arrived home to find my mother and brother being attended to by Richard. My mother adored Richard and because she lived close by she would frequently call on us, particularly if we were going away. We chatted, and once they finished their coffees they made moves to go, wishing us a good holiday.
After the front door had clicked to I went into the bedroom, expecting to find everything I needed for the holiday ready and waiting. Except this time, there were no clothes on the bed to pack, and no suitcase in which to pack them. I went into the living room, where Richard was sitting in silence.
“Erm, don’t you think we ought to start packing?” I said. “If we leave it any longer we’ll end up in a panic.”
In response, Richard beckoned me to the sofa and pointed to the seat next to him. Puzzled, I sat down. Then he hugged me and started to cry. I was shocked. He’s a big, strong man, physically and mentally, and not given to floods of tears. What on earth was going on?
“What is it?” I asked. “What’s happened? Is it serious? Is it bad news from home?”
Richard’s family are thousands of miles away, in Barbados. But he shook his head. It wasn’t them.
“It’s us,” He sobbed. “We aren’t going away, Roland. We can’t. I’m so sorry.”
“Why? Why can’t we?”
“The specialist rang. The one who did the test yesterday. He wanted your office number, because…
“Because he said that we can’t go away. The test result came back. Roland, you’re positive. HIV+. You’re really ill. We can’t go to Italy. If we do…. you won’t come home alive. It’s that bad. I’m so, so sorry……”
Thank you, Roland Chesters and RABT Book Tours
About the Author
Roland Chesters was born in the north of England to an English father and French mother and has lived most of his life in London. He graduated from the Royal Holloway College with a degree in Modern Languages and after a variety of jobs joined the Foreign and Commonwealth Office as a language-testing specialist. Following a diagnosis of HIV and AIDS in 2006, he became a campaigner for disability rights. He is now a self-employed Disability Development Consultant and and was a finalist in the 2019 National Diversity Awards as a Role Model for Disability.
Roland lives with his partner, Richard, in London and enjoys opera, classical music, theatre and fashion (his favourite item of clothing being a bright red corduroy suit). He fights boredom and normality with gusto, and says he is at his best when he’s made a positive impact on someone else’s life.
‘Ripples from the Edge of Life’ is Roland’s first (and only according to him) book.
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