“The dew shall weep thy fall to-night.”
George Herbert (1593-1633)
It is only when you fall in life, that you realise how far you can fall. Seven years ago my partner, Gaynor, who was in her mid-forties at the time, was diagnosed with early-onset Parkinson’s disease (PD). I am hazy now as to exactly when I truly realised the cliff we had just fallen off. Perhaps it was the day the diagnosis letter arrived, or when I was sitting in a Citizen’s Advice meeting talking through disability benefits. Or maybe the day I realised the pharmacist had started using my first name.
At the time, we were running a highly-successful technology publishing business, focusing on writing, editing and commissioning material about the future of digital technology. We had a number of prestigious, national public sector clients, including the UK universities technology think-tank, JISC, and Oxford University. We also had had material published in more mainstream publications such as Computing and Prospect magazine.
"After being fobbed off by GPs that it was
all repetitive strain injury, the process of
finding a real diagnosis began in earnest."
As well as employing us both full-time, we had freelances helping out with material and day-to-day tasks like proofreading. The business was doing very well, we were regularly asked to speak on the future of technology at major conferences, and we even had the wherewithal to fund a separate office, something that many writers can only dream of. They were heady times, and, as Gaynor has said many times, for a while we ‘had a ball’. Then disaster struck.
At first it was just pains in the right arm and general feelings of tiredness. This got steadily worse and started to impact on delivering the work for clients. After being fobbed off by GPs that it was all repetitive strain injury, the process of finding a real diagnosis began in earnest. This was a long, drawn-out and anxiety-drenched time. There were endless consultations and tests, including a horrendous lumbar puncture. After months of seeing different specialists including for MS, ME, spinal tumours and chronic fatigue syndrome, a neurologist finally did some tests and confirmed it was Parkinson’s.
Devastating as this was, it also couldn’t have come at a worse time as far as the business was concerned. The Great Recession was just hitting many of our public sector clients and they wanted more for less or, in one particular case, the entire agency was closed down with a month’s notice.
"As she couldn’t really use the Mac or a pen anymore, she would have to sit and point to mistakes on the screen and explain how I should correct them, line by line."
We fought a herculean battle for a couple more years, focusing only on key clients, doing what work we could, finding ways around Gaynor’s increasing mobility and arm difficulties. Slowly we wound things down as the illness became steadily worse. For a while I continued to work, supporting us mainly through continuing to do some technical authoring and writing a book on social media.
This was all very difficult, as Gaynor was always the editor in our little team – formally trained and razor-sharp on grammar. As she couldn’t really use the Mac or a pen anymore, she would have to sit and point to mistakes on the screen and explain how I should correct them, line by line. Editing the book, in particular, was a horrendously laborious process. By 2014, almost ten years to the day from its launch, we finally decided to close the business and start the formal process of dissolving.
"the worst aspect is the gnawing
feeling that life is passing you by"
We live a quiet life now and, at times, the days running the publishing business seem like a glorious, half-remembered dream. Gaynor has unfortunately continued to decline and the whole saga has affected my own physical health and emotional state. We subsist on benefits, savings and the odd bit of paid non-fiction work that I can bring in. My own energy levels are not up to undertaking much, nor is there the time with caring duties and seemingly endless visits to nurses, GPs and hospitals.
Other than the physical and emotional trauma, the worst aspect is the gnawing feeling that life is passing you by: as you hear news of friends and former colleagues who are undertaking new challenges, meeting their agent or launching a new website. To counter-act this we do make a conscious effort to keep in touch with the world of writing, mainly through the brilliant Nottingham Writers’ Studio. The one thing I do try and find time for is writing the novel I had been planning out in my head for years. It is a rather bonkers, and black, political satire, with a cast of outrageous comical characters. I have no idea if it will see the light of day, but I enjoy tapping away at it when there is time. Meanwhile, Gaynor, when she has the energy, works on short stories.
"we are the ‘disappeared’, millions of
people silently caring for others with
little support from the government"
When you fall, you realise how many other people have fallen too. I have joined a local carers group, undertaken some voluntary work, and, of course, got involved with this Society of Authors group. I have found you meet all sorts of lovely, caring people who are enduring the most horrendous difficulties looking after other people. Time and again, I have had conversations with people about ‘the past life’ where they could work, earn and get out into the world. To a certain extent we are the ‘disappeared’, millions of people silently caring for others with little support from the government or other agencies.
The Writers as Carers Group is a brilliant initiative by the Society, and I hope it goes from strength to strength. When you are one of the fallen, you need all the help you can get.
Society of Authors Writers as Carers Group
Paul Anderson is a non-fiction author, member of the Society of Authors and of the Society of Authors' recently established subsidiary group, Writers as Carers.