Just before the COVID-19 pandemic flooded the planet, my job was supporting people with learning disabilities to live and build their world in the community. It could be complex and challenging work, requiring endless patience, kindness, and understanding. Despite their disabilities, they could be happy, friendly, and, in their way, kind and caring. For support workers, while rewarding, it could be challenging, stressful, and a test of endurance.
I found my escape and relaxation in writing and maintaining my blogs and websites, which dealt with diverse science subjects, vintage and veteran cars, and folklore, myths, and legends. I was also fortunate to be accepted as a contributor to the Folklore Thursday website (#FolkloreThursday) and Enchanted Conversation online magazine.
I was posting my articles on Twitter, and my contributions to the hashtag Folklore Thursday were getting noticed. They mentioned my name to a major UK publisher that was seeking a writer for a book about folklore, myths, and legends they were planning. Naturally, when the publisher contacted me, I jumped at the chance. After an enthusiastic and promising discussion, they proposed I write a book on the folklore of lost worlds, drowned cities, and mythical sanctuaries, which we called the “Lost Worlds Project.” At the time, I did not see the irony in that title.
With a demanding full-time job and my spare time filled with writing, I eventually found myself physically and mentally drained. I took a two-week holiday, thinking all would be fine after a rest, and looked forward to having extra time to write. But things did not improve, and a couple of days before I was due back at work, I had a disconcerting experience.
After an enthusiastic and promising discussion, they proposed I write a book on the folklore of lost worlds, drowned cities, and mythical sanctuaries, which we called the “Lost Worlds Project.”
I live in a block of flats just across the road from a beautiful park, where I often walk. One day, while walking in the park, to my discomfort, I became aware something was happening to my vision. The path I was walking on was spaced with tall, thin lamp posts. I was disturbed to see that as I looked at one, it seemed to split into a replica of itself, which floated a little higher and to the right of the original. I rubbed my eyes and looked around, and other lamp posts were behaving in the same way. I had not been drinking alcohol or taking hallucinogenic drugs. Yet, wherever I looked, the world was behaving in the same bewildering way.
I found that by looking down just in front of my feet, I could continue along the plain black tarmac path, and as I was near home, I continued in this way. However, when I reached the park gates, I had another shock. As I stepped off the tarmac path of the park onto the concrete pavement outside, it turned into a wavy, undulating surface. A fence of iron railings separated the pavement from the park, and this was rippling. Feeling unsteady, I reached out and grabbed the ironwork and stood still, and the rippling stopped.
I was bewildered by the sudden change in surface and clung to the ironwork for support, beginning to panic. I looked back at the park path and saw it was constructed of uniform black tarmac. Looking at the pavement outside the park, I saw that it was made of regular concrete slabbing. I realized it was the lines of the slabs that were causing an optical illusion, and the same was happening with the line of railings. I let my hand run along the railings as I walked, looking straight ahead instead of down and made it to my block of flats. Once I was safe in my flat, the disturbing optical phenomenon disappeared, and I booked an appointment with my optician for the next day and another with my doctor for the day after.
The next morning, as I stepped onto the paved pathway on my way to my optician, I experienced the same wavy illusion again, but despite my anxiety, I pushed on. When I reached the city center, the effect was worse because it was a pedestrianized area made of slabs and paving bricks. I had to keep close to the walls to avoid getting into trouble, but I finally made it to my optician. After a thorough eye examination, he told me I was suffering from double vision but could not say why. I was referred to the Eye Clinic at the Royal Stoke University Hospital and provided with an eye patch to cover one eye, which did stop the double vision.
A couple of days later, I saw my doctor, who seemed baffled by my double vision. I explained how low I had been feeling before the incident in the park and that I was now experiencing tremors in my arms and legs when at rest. She ran through a few cognitive and physical tests, advised me to take a month off work, and wrote the necessary certificate.
Meanwhile, COVID-19 was spreading rapidly across Britain; everywhere was in chaos, and the National Health Service was on the verge of collapse. All non-essential appointments were cancelled, yet I was fortunate to be given an appointment with a neurologist, who insisted I did not have Parkinson’s but arranged further tests and scans.
I was desperate to know what was wrong and pressured him to provide a diagnosis. In exasperation, he asked what I wanted it to be. I replied that I wanted him to say there was nothing wrong, it was all in my mind, and I should go home and pull myself together. He replied that he could not do that as some of the other tests had shown there was a neurological problem, but not Parkinson’s, and told me to come back in three months. During that time, I was seen by the Eye Clinic for a trial with prism lens spectacles. Unfortunately, I did not get on with the prisms and was forced to wear an eye patch over my left eye.
From the Mayo Clinic: Parkinson’s disease is a movement disorder of the nervous system that worsens over time. . . .Symptoms start slowly. The first symptom may be a barely noticeable tremor in just one hand or sometimes a foot or the jaw. . . . But the disorder also may cause stiffness, slowing of movement, and trouble with balance that raises the risk of falls.
All the time, I was experiencing new symptoms, and the tremors were getting worse. One of these signs was that my handwriting had become much smaller and more ragged. I later found out small handwriting was a symptom of Parkinson’s. On a computer screen, sentences and paragraphs seemed to float about, and I found it difficult to make up my mind about how to finish a paragraph.
When I returned to see my neurologist, I was in a terrible state. He readily agreed my condition had deteriorated but still did not think it was Parkinson’s. But just as he was speaking, I underwent a sudden uncontrolled jerking movement, which surprised him. He proposed I undertake a week’s trial of a Parkinson’s medication called Sinemet. As soon as I began the medication, my double vision cleared, the stiffness and tremors eased, and my coordination improved.
The following week, when I saw him, I was almost normal. He merely nodded and said, “Oh yes, I do believe you have Parkinson’s disease. Stay on the Sinemet and come back in three months.” He made no attempt to soften it or sympathize, but at least I had a diagnosis and could begin to plan how to help myself. Another consolation was that I would now have plenty of time to concentrate on my writing.
To begin with, my employers had been keen to retain me. They were willing to be flexible, insisting I could continue working with a few changes. My concern had not been for myself but for our service users. To maintain their safety, vigilance was needed, and their environment had to be kept free from risks. I feared that with my vision problems and deteriorating physical state, I would not be able to give them the necessary attention.
Their enthusiasm for my return had increased until I was finally diagnosed with Parkinson’s disease, and then their attitude changed completely. I underwent company medical assessments that confirmed I was unfit for the job. A couple of days before Christmas, they rang to inform me I would receive a dismissal letter in the New Year. However, this was cushioned because I would qualify for a pension in February.
Determined to make the best of things and with time to spare, I pushed on with the Lost Worlds project, almost finishing the first draft. However, I then noticed that things were going wrong with my eyes again. I found it hard to concentrate, and sentences and paragraphs moved about the screen, so I made little progress with the book. I decided I ought to tell my publisher of my Parkinson’s diagnosis. Rather than saying outright that I was being dropped, they went missing, leaving emails and telephone messages unanswered, and it became clear they no longer wanted to know. Although disappointed, I published a small part of Lost Worlds on Kindle and resolved to create a new world to replace the one I had lost.
The rebuilding continues to this day.
