Tilda is Visible by Better Reading’s very own Jane Tara is out today. Rather than review it here, Jane is sharing the inspiration behind the novel, and Tilda’s story.
If you’d like to read some reviews, check out the recent Preview campaign we did for Tilda is Visible, and the overwhelming love shown for this very original novel here.
The Spark of Inspiration for Tilda is Visible
I’m very excited about the release of Tilda is Visible. It has been a long time coming for me – over 10 years. I jokingly say I had to live the novel first before I wrote it.
The inspiration for Tilda came to me ten years ago, when I was misdiagnosed with a degenerative eye condition and told I was going blind. A series of tests in the presence of two optometrists, led to one specialist taking me into a room with that look on her face. You know that look. If you are lucky enough to have never seen it in real life, then you’ve certainly seen it on Grey’s Anatomy.
It’s the “I have bad news” look.
“You have Retinitis Pigmentosa,” she said. “You’re going blind.”
I laughed. Seriously. Stop joking around.
“The Royal Society for the Blind is wonderful. They can come over to your house and help with things.”
“What like? The cooking and cleaning?”
I’d like that.
“They can teach you to move around your home. They can put in handrails.”
This wasn’t funny anymore.
She showed me the scans of my eyes and the pigmentation patterns I have right through my retina.
“You need to have further tests at the Centre for Eye Health. The Guide Dog Association funds it. They’ll be able to tell you how far the condition has progressed.”
The first available appointment at the Centre for Eye Health was nearly three months away. The last thing I did before leaving was ask them to write the condition down so I could research it. Retinisis Pigmentosa.
The next week wasn’t pretty. It started with a lot of Googling. Then I returned had another optometrist take more scans. She took more (wider shots of the retina) and then put them all on a memory stick for me.
I did my own detective work. The pigmentation in my retina certainly looked like the ones with Retinitis Pigmentosa I saw online. But I didn’t want to be one of those people who self-diagnosed via the Internet. The problem was… I couldn’t find any other reason for why my retina would have this pigmentation. It clearly indicated an eye disease. Also, there was no denying that I had the other main symptoms – an aversion to glare and night blindness.
It didn’t look good. No treatment. No cure. But worst of all … and this was the terrifying bit, hereditary. There would be a 50% chance of me passing it on to my sons.
I didn’t react well to that. I sat in bed, drinking beer, crying and searching online for a way for my sons to dodge this bullet. But there was nothing I could really do but wait and see what the Centre for Eye Health tests showed.
Wait and see?
During this time, I realized how our language is full of sight analogies. I’ll see you later. Look here. Nice to see you. Focus on this. See what I mean?
I noticed every single reference to sight in our language. And it got me thinking… what does it really mean to see? If I was going to lose my sight… how would I see things? How would I see myself? How does one see without sight?
For just over two months I obsessively researched sight. I read all about visual potential optometrists, natural eye care and the Bates method. The eye body connection and integrated healing via the Grunwald method. I read the works of about a dozen specialists who were taking ophthalmology into new realms including the amazing Jacob Liberman. Consciousness and vision. Our third eye. I read about blind people who had been taught to see through their chest. Was our vision simply a reflection of our reality? Can light heal the eye? How is the spirit connected? Where is the mind’s eye? Do we even see with our eyes?
I spent two months staring into the faces of my children. And my own face in the mirror. Would I not get to see myself age? Like many women in their forties, I’d been critical of the visible ageing that was now taking place on my face. I’d also started feeling invisible. But now I could see myself clearly. I loved every line, every wrinkle. I saw myself more clearly than I had in years. I realised I really wanted to see myself age. And if I wanted to see that happen, why would I ever criticize it. Or erase it.
I began to ask – how did I see the world? I took a long hard look at my life. Although I’d spent years studying various metaphysical and spiritual paths, I gained greater clarity in these two months than the previous two decades. It became clear to me that seeing is subjective. And perhaps I’d been blind for years. One thing I knew, whether or not I lost my sight, this was an opportunity to gain greater insight.
I arrived at the Centre For Eye Health at the University of NSW nervous but accepting. What would be would be.
One specialist handed me over to another. The fancy machines gave way to a darkened room and a blindfold for me, along with some jokes about that. Then wearing night vision goggles, the technician placed gold electrodes into my eye and performed more tests. And the result…
In short, I’d been misdiagnosed. There is a longer story about the pigmentation in my retina, but that’s for another time. On that day, I made it to the car park before I started howling.
That was a decade ago, and it was pivotal in changing the way I see the world, and myself. The possibility of losing my sight provided me with greater insight. It was the spark that started a journey I’ve been on since then, one that led to me writing Tilda is Visible.
In my novel, Tilda literally can’t see herself. And once you’ve lost sight of yourself, how can you expect others to see you?
As for me, I’m visible again. It took the threat of losing my sight for me to see myself clearly. I like what I see now.
I hope you enjoy Tilda is Visible. It is written to entertain. But also, I hope it makes you think about your own view of the world, and how you see yourself.
With gratitude,
Jane Tara x
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