Devastating diagnosis gives rise to an illuminating memoir and self-help book
Customer testimonial
"After my initial meeting with SilverWood, I felt like I’d come home, like I’d been received as part of the SilverWood family. No question was too silly. They always responded and explained. The process they took me through was a revelation to me. It was an engaged process and I was allowed much more of a voice than I anticipated."
Roland Chesters | Author
Author profile
Roland Chesters is a retired self-employed disability consultant who lives in London with his partner Richard. When he’s not busy with voluntary work in the disability field, he spends his time enjoying opera, classical music, theatre and fashion. But back in the summer of 2006, Roland’s future prospects looked devastatingly different.
"I was working as a civil servant at the Foreign and Commonwealth Office at the time and for two years I had become increasingly unwell," explained Roland. "I was gradually losing the use of my arms and legs, and the ability to speak. I was very confused, losing memory and getting lost. I saw lots of specialists but none could give me a definitive diagnosis. After a particularly bad spell, my partner Richard started coming to appointments with me and one specialist recognised that we were a same sex couple. He asked if I had had an HIV test, which I hadn’t. So on Thursday 31st August, two days before we were due to go on holiday, I had the test. On Friday, the consultant called home to get my office number. Richard managed to persuade him that he, Richard, would break the news to me on my return home that evening that we we weren't going to go away - that I had just two weeks to live."
Roland's life changed at that moment, faced with the unimaginable task of planning his own funeral. The following Monday, Richard took Roland to a sexual health clinic to get a clearer picture of what they were dealing with and what was likely to happen. There, Roland was given the chance to start treatment, and under no pretenses it would be easy, he was told that there was still hope.
Nobody could be certain that Roland would survive beyond the prognosis, and if he did, there were no guarantees he would be able to walk again. But 12 years on, he can walk and talk, and as he jokes, "if the sun is shining, I can even do both at the same time."
Roland stayed at his job with the Foreign and Commonwealth Office for several years following his diagnosis, where he gained some invaluable, if difficult, insights into the challenges faced by people with disabilities in working environments.
Continuing to respond well to treatment, Roland turned his attention to how he could help others going through similar journeys. He completed various courses, arming himself with as much professional knowledge as he could, before leaving the Foreign & Commonwealth Office to create his own disability development consultancy business.
In that capacity, Roland used his professional and personal experience to offer support to adults who had become disabled later in life, helped them stay in work or get back into work. He also worked with organisations which wanted to become more inclusive, as well as larger charitable organisations that support people with disabilities. Since retiring he has taken on a number of voluntary roles in the charity sector supporting, enabling and empowering people with different disabilities, most notably those living with HIV.
Striking the balance between memoir and self-help book
When Roland set out to put a book together, his primary motivation was to tell his story for his own emotional processing. But as well as being an account of his own journey, Roland wanted the book to contain stories from other people living with the HIV/AIDS, as well as the friends, families and medical staff who support them. As he began to put the strands together, it became clear that it could also be a way to help others going through similar situations.
This gave the book two distinct angles, which became an issue when approaching publishers.
Roland recalls, "When I was putting the book together, I was put in contact with another publisher by a friend of a friend. Their opinion was that they wouldn't take it on because it fell between two distinct camps, a memoir and a self-help book. They said the two couldn't be mixed, and the book had to be written for one genre or the other."
However, Roland's motivation for the book wasn't fame or huge sales. And he was steadfast in what he wanted it to contain. "I thought, this is my book, this is how I want it to be. I'm not creating it to be an award winner or to earn millions from it. It's just something that I need to get out of my system."
"It was a cathartic process," said Roland. "Getting the story out there is my legacy; I have no children so this is what I'm leaving behind. I want to help dent some of the stigma around HIV and AIDS, and to get people to understand that treatment has moved on. There's a substantial number of people in the UK living with HIV who aren't diagnosed and therefore not on treatment, and that's a potentially dangerous element because they could infect other people."
Retaining control over his story through self-publishing
In 2017, having been declined by a number of literary agents, Roland was referred to SilverWood by an acquaintance. He took them the initial draft of his book, which had been adapted from verbal recordings.
"What first struck me about SilverWood was the personal aspect. Helen didn't talk about costs or charges or business plans and so on - she was interested in my story and what I had to say. The range of books they produce also gave the impression that they would be behind it and that they would be really supportive."
Roland was delighted and excited when he received the initial draft from SilverWood's team.
"The difference between my drafted word and what they sent back to me was substantial - the clarity, the layout. It was actually a bit scary - it became real - there was the realisation that at some point people will be getting hold of it and finding out intimate stuff about me."
For the cover, Roland had a vision of what he wanted but found it tricky to convey in words. "SilverWood's artists were fantastic at mind-reading, but in the end I went and found photos and other book covers I liked in order to get my ideas across. They came up with various different forms and we eventually ended up at a cover design that felt right. We tweaked it and I love the result."
Outcome for the author
Ripples from the Edge of Life was published in May 2018 and is selling well. More importantly for Roland, the book has had a positive and often profound impact on those who've read it. SilverWood created the ebook version and loaded that onto Amazon, as well as making the paperback available there. Roland was astonished that in the first two months after publication Ripples remained in the top 10 bestseller list on Amazon and that it continues to receive 5* reviews there.
"People say that have been moved by it, that's it's educated and informed them. For people with HIV and AIDS, it's brought back memories and it's moved them very deeply. It's a no-holds-barred account and I'm hugely proud of it."
Roland's publishing journey was relatively quick, taking around eight months from his initial meeting with Helen to publication. He describes it as an intensive, backwards and forwards process. "SilverWood are proactive, in that they keep the process moving forward. It's done in a supportive and empathetic way, and they were always very communicative. They're very open, and I wouldn't hesitate to recommend them to others."
Roland has done book signing, radio media tours, and, as a result of publishing his book, has appeared on numerous podcasts and has his own radio show on Big Ear Radio. As a direct consequence of having the book published he was shortlisted in the 2019 National Diversity Awards as a role model for disability and he was asked to deliver disability awareness training to the organisers of the 2022 Commonwealth Games, and for the stewards and managers of the Laying in of State for the late Queen Elizabeth II and for the Coronation of King Charles III.
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