When I was a child I used to pretend that I was blind. I’d try to navigate my room, my eyes screwed shut, my hands groping out. I always ended up banging into something, bruising myself. It was not a game. It was a kind of instinctive aversion therapy, I think. For I was terrified of losing my sight.
My fear was not without foundation. When I was only two years old, I was savaged by a dog. One fang penetrated straight through the corner of my left eye and destroyed my tear duct. I spent a lot of time in the hospital with chronic dacryocystitis, a dangerous infection of the lacrimal sac. Complications of dacryocystitis can be devastating. They include meningitis, brain abscesses, permanent loss of vision, anddeath. No wonder I was terrified.
When I was 11 years old I was the first Australian to receive an artificial tear duct. Called a Jones tube – after the doctor who invented it – it’s a thin glass tube inserted from the inner corner of my left eye to the inside of my nose. It’s designed to drain tears from the lacrimal sac down the throat.
My life was revolutionised. No more emergency dashes to the hospital, no more acute anxiety over the danger of infection, no more tears constantly trickling down my face. The technology is not perfect, not by any means. I need to take constant care of the cleanliness of my personal spaces and wash out the Jones tube at least twice every day. Every year the tube is scoured and replaced, a procedure which used to involve a general anaesthetic but is now done and dealt with in an hour in my specialist’s office.
My fear of losing my eyesight slowly faded away. I forgot I had ever pretended to be blind.
Then, a couple of years ago, I noticed my eyes were aching a lot. I couldn’t decipher street signs anymore, and reading was a struggle. I’m a writer, and reading is one of the greatest pleasures of my life. I began downloading books to my iPad, making the text larger and larger.
At the time, I was working on a retelling of the Greek myth of Eros and Psykhe. In the best-known version, written by Lucius Apuleius in the 2nd century AD, Psykhe is described as “so strangely and wonderfully fair that human speech was all too poor to describe her beauty”. Playing with the possible meanings of “fair”, I decided my character would have albinism as well as a strong sense of compassion and justice. Beginning to research albinism, I discovered the condition is often accompanied by vision impairment. Since the heroine of the myth is forbidden to see the face of her lover, hidden from her in darkness, this disability seemed to fit perfectly. And so, as I began to write my novel, I gave my Psykhe poor eyesight.
It had been a busy and stressful few years. My daughter, Ella, had sat her final exams during the COVID lockdown, and I’d written a novel inspired by my great-uncle’s experiences fighting in Crete in World War II. The Battle of Crete was one of the bitterest and bloodiest of the war, and the people of Crete suffered terribly during the Nazi occupation. It was an intense, harrowing book to research and write, so when I began to suffer blurry vision and throbbing headaches I blamed it on exhaustion and stress.
I didn’t have time to go and have my eyes checked, I told myself. I’ll go after lockdown, after my book is finished, after its launch in Australia and the US, after my tours. I began to joke about getting older. After months of trouble, at last, I went to see an optometrist. He told me I had macular degeneration, and that it was highly likely I would, in time, lose my eyesight.
I was blindsided. How could I write, how could I read, how could I do anything I loved to do? For me, there is a mysterious connection between the brain, eyes and hands – they work together to create the flow of words that becomes a long-form narrative. If I couldn’t see, how could I write?
And there was so much of the world I had not yet seen! I had never been to Salzburg or Prague or seen the northern lights play across the frozen sky. I wanted to see Venice again, in case it sank below the waves, and I needed to explore the magical landscape of the Dolomites where many scenes of my novel Psykhe were set. How could I describe a land I had never seen?
“Going blind, especially later in life, presents one with a huge, potentially overwhelming challenge: To find a new way of living, of ordering one’s world, when the old has been destroyed,” Oliver Sacks wrote. Somehow I had to find a new way to live, a new way to write.
Homer was blind, I reminded myself, and so was John Milton. James Joyce had to write Ulysses in red crayon on huge sheets of white paper. Alice Walker lost sight in one eye when one of her brothers accidentally shot her with a BB gun. Jorge Luis Borges lost his eyesight when he was in his mid-50s, the same age as I was. He wrote: “Everything winds up being lost to me … everything falls into oblivion.”
My vision was cloudy. Everything I saw had a ghost floating behind it. The white lines dividing the road appeared wavy and alive, like writhing snakes. Suddenly the whole world felt dangerous and unpredictable. My life narrowed around me, as I struggled to write my novel about a young woman in ancient times whose dim eyesight I had somehow, eerily, acquired.
Numerous visits to eye specialists followed. I discovered I was growing an epiretinal membrane over the retina in my right eye. This is a semi-translucent coating like the thick, wrinkled scum that forms on top of hot milk. My doctor told me I could have surgery – called an epiretinal peel – which would return my eyesight for a while. However, the side-effect of the surgery would be the growth of a cataract in my right eye which would slowly reduce my vision once again.
I had the operation. It was as if scales had fallen from my eyes. The world was so bright, so clear, so radiant. I threw myself into my writing, I saw Venice once more, rode a bike through the wildflower meadows of the Dolomites, and sang Climb Every Mountain with my daughter in Salzburg.
Slowly, slowly, the world dimmed and grew grey once more. The blinding headaches returned. I squinted at my computer screen, rested my eyes with cold lavender compresses, and kept on working. My pain, my fear of blindness, and my struggle to negotiate a world suddenly filled with sharp corners, all worked their way into my story.
A week after I delivered my novel Psykhe to my publisher, I had another eye operation. An artificial lens was inserted into my right eye, a strange twin to the artificial tear duct in my left.
Strangely, miraculously, when I no longer needed to understand what it is to be vision impaired, I could see again.
Psykhe by Kate Forsyth, Penguin, is available now.
This article originally appeared in the September 2024 issue of The Australian Women’s Weekly. Pick up the latest issue from your local newsagent, or subscribe so you never miss an issue.
