I was told I’m going blind…and now I can see

3

December 1, 2013 by roadmancebooks

Eye

I’m very excited about the release of my new novel, The Happy Endings Book Club. I have a long list of ideas waiting to be turned into books. Some have been waiting for years. This wasn’t one of them. The Happy Endings Book Club sprang from events that happened earlier this year. It was a cathartic reaction to a challenging few months. In many ways, it has been my own happy ending.

In March this year I went to Specsavers to have my eyes tested and to get some new glasses. I normally go to an optometrist in the town where my mother lives. He uses experience over schmancy machines to test my eyes. But Specsavers had a two for one deal and my glasses were on their last legs, so off I went.

The optometrist hooked me up to one of the state of the art machines, and took photos of my retina. She asked a bunch of questions.

“Do you have problems seeing at night?”

“Yes… my night blindness is a running joke with my close friends.”

“How about glare?”

“I can’t leave the house without sunglasses.”

More questions followed, and then she took more photos. She took me to a small room where I had more tests. Finally she left me alone for a while. A long while. When she returned it was 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.

“Exqueeze me?”

“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 hand rails.”

She showed me the scans of my eyes and the pigmentation patterns I have right through my retina.

“You need to have more 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 last thing I did before leaving was ask her to write the condition down so I could Google it.

Retinisis Pigmentosa.

The next week wasn’t pretty. It started with a lot of Googling. Then I returned to Specsavers and asked the optometrist for the scans. She took more (wider shots of the retina) and then put them all on a memory stick for me.

I made an appointment with the Centre for Eye Health, but was going to have to wait at least two months.

In the meantime, 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 my aversion to glare and my night blindness, two main symptoms.

It didn’t look good. No treatment. No cure. But worst of all … and this was the terrifying bit, hereditary. Despite no history of it in my family, it can occur. And there would be a 50% chance of me passing it on to my sons.

And this is where I went from feeling like Nancy Drew solving a mystery, to absolute crap.

My sons.

My body filled with fear that even now as I write this, there is a memory of it in my limbs. I was filled with ice. I sat naked in bed, drinking beer, crying and searching online for a way for my sons to dodge this bullet. And I knew I would do anything, anything, for them to be okay. I would go blind. Let me take the bullet. I was okay with that. But please not my babies.

At this point, let’s rewind nearly twenty years.

I was fifteen and having a medical examination for my scuba diving license. The doctor looked into my eyes with one of those old school thingamajigs.

“You have aboriginal blood?”

I have pale white skin and freckles. “Can’t you tell?” I laughed.

“Let me rephrase that so it’s not a question. You have aboriginal blood.” It was a statement now.

“There has always been a family rumour,” I admitted.

“It’s not a rumour. It’s a fact.” He got down an old book for a high shelf. He opened to a page that showed the patterns in the eye of different races and pointed to one. “That’s you.”

To be honest, I can’t remember the images he showed me, or even much of the conversation that followed. It happened so long ago. I do remember how excited he was. He even called in his secretary to show her. I didn’t take it in. I went home, called my grandmother to tell her, and that was that. It was something that, if true … I was pleased about. Aboriginal heritage.

But now, it was the thing that both my partner and best friend focussed on.

“You’re not going blind. You have Aboriginal eyes.” They both insisted.

So we all researched that. My partner Dominique is an academic. He trawled university sites for any papers on ethnicity and retina pigmentation. We found two small mentions in research papers and a few mentions of a similar thing in Native Americans but not much about Aboriginal Australians so nothing to really hang my hopes on. I had to wait and see.

Wait and see?

See?

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 began to notice 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 feeling invisible. But now I could see myself clearly. I loved every line, every wrinkle. I saw more clearly than I had in years. I stopped to view the world around me a lot more… to stare at the sun.

I reprioritized my life. If I was losing my sight, the last thing I wanted was for the Royal Society for the Blind to come around and teach me how to manage around the house. I wanted to pack a bag and take my kids travelling. Long term. James Holman, the blind traveller from the Victorian era became my inspiration. Coincidentally, years earlier we’d used a quote from his travel diaries for our children’s publishing company, Itchee Feet.

I see the world with my feet.

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. I was a little thrown by the guide dogs motifs on the window, but overall quite positive. What would be would be. I still had that dreadful icy fear in my limbs each time I thought of how this could impact my sons, but I accepted my own fate. I was still hopeful there had been a dreadful mistake, but if not … then I’d write a book about it. I’d write, right?

Dom came into the clinic for the tests with me. It was state of the art visual testing. I’d been wondering if there was any way I could cheat on the tests. I hadn’t even been able to study for them. How would I ever pass?

One specialist handed me over to another. The fancy machines gave way to a darkened room and a blindfold. I made a weak joke that it had been a while since I’d been blindfolded in a room with two men.

Then wearing night vision goggles, the technician placed gold electrodes into my eye and performed more tests I couldn’t cheat on.

I knew the results of these tests wouldn’t be shared with me for a week, and only once they’d been returned to the optometrist. So imagine my utter surprise when the specialist said:

“Your eyes are fine.”

“Exqueeze me?”

“You don’t have retinitis pigmentosa.”

“I don’t?”

“Look, places like Specsavers have all the latest equipment and no idea how to use it. The pigmentation presents like Retinitis Pigmentosa in the images, but we knew from the moment we viewed it that it wasn’t that.”

“What is it then?”

“No idea. It’s an unusual pigment.”

Here’s where my partner interjected and told him about the doctor who’d informed me that I had aboriginal heritage. “Could it be that?” he asked.

“Yes. I’ve seen a similar thing in islander boys. And those old-school doctors usually know a thing or two.”

I needed to make sure. “What about the other symptoms. I can’t stand glare.”

“You’re very fair.”

“And I’m night blind.”

“Can you see this?” He waved to me across the still darkened room.

“Yes.”

“You’re not night blind. Your tests are fine. I think what you experience as night blindness is simply that your pupil takes longer to adjust to the dark.”

“I’m not going blind?”

“No, you’re not.”

I made it to the car park before I started howling.

The next few days passed in a haze of relief and joy. I realised just how stressful the past few months had been. The possibility of going blind had coloured every waking moment. It took weeks for the fear in my limbs to subside, although the memory of it returns when I talk about that time. It took months to wake and start the day with thoughts other than that.

I turned my Nancy Drew skills to my family tree and uncovered some very interesting things (but that’s another story). I waited for the Specsavers’ optometrist to call with the official results, but she didn’t. I finally called her and she apologized: yes indeed, the results had been back for over a week, but she’d been busy. She had no idea that the specialist at the Centre for Eye Health had already given me the all clear. She just didn’t think that letting me know she’d misdiagnosed me was important.

(Specsavers, if you’d like to contact me about this matter, go ahead. An apology would be appreciated. I seriously considered taking this matter further, but ultimately I can’t stand drama and I’d had more than my fair share for months, thanks to the incompetency of your staff.)

I was pleased the whole episode was over. Focussing on the positive, I would write a book.

And from that, sprang The Happy Endings Book Club.

It’s not the book I thought I’d write. Or expected to write. But I needed to write it. Through the female characters I explored the idea of sight, and what it means to really see.

Each character has lost sight of something important. Paige misses glimpsing the magic in the world. Sadie doesn’t see the beauty inside people. Amanda wonders what she ever saw in her ex husband. Tilda literally can’t see herself. Michi can’t bear looking at her family, while Clementine is blind to what’s right in front of her. And Eva looks for romance in all the wrong places.

Through each of these very different characters I had the opportunity to explore some of the questions I’d been asking for months.

See why this book is important to me?

Like all happy endings, it’s never really an ending. It’s usually a beginning, and this is mine, as I gain deeper insight into the art of seeing.

I hope my new novel The Happy Endings Book Club entertains you. But more than that … I hope you come away from it asking yourself, how do I see myself? How do I see the world? How do I see? This Christmas, these questions are my gift to you.

In 1989, Dr. Jacob Liberman commissioned Arion Ocean to create this painting because it captured the connection Liberman observed between light, vision and consciousness. I spent a lot of time staring at this image and find it to be extremely powerful and healing.

In 1989, Dr. Jacob Liberman commissioned Arion Ocean to create this painting because it captured the connection Liberman observed between light, vision and consciousness. I spent a lot of time staring at this image and find it to be extremely powerful and healing.

 Copyright for the Eyelight image above

http://www.jacobliberman.org/light/eyelight/

http://sacredarchitecture.com.au

 

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3 thoughts on “I was told I’m going blind…and now I can see

  1. murfomurf says:

    Glad you’re not going blind! What horror! I thought I was going blind in one eye recently, too. However it turned out to be a “detached vitreous humor” where the squishy part of the eye started to peel off the retina from the edges inwards. After several emergency and non emergency visits to the public hospital eye clinic and no treatment, the eye started to heal itself! It took several months, but is nearly normal again, yippee!! After your experience at Specsavers, I won’t be going there for my much-needed prescription sunglasses, but will instead return to OPSM. I always knew Specsavers were only for saving on specs, not on eye care and now I know there is no point in them monitoring my retinal intactness nor my family history of glaucoma. Back to the educated! PS. I’m also a very fair ginger with odd things in my eyes – but they’re due to burst blood vessels from noradrenaline injections as an asthmatic kid.

  2. […] know that this book has special meaning for the author from reading her blog, earlier this year Jane Tara was told she was at risk of losing her sight and, as she waited for […]

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