An Invisibility Cloak of the Self: Jane Tara on Being Told She Was Going Blind in Her Forties

I had come to the optometrist because I wanted some new reading glasses.

Instead, she told me I was going blind.

“You have Retinitis Pigmentosa,” the optometrist said. “The Royal Society for the Blind can visit you at home and help you put in handrails.”

I’d recently turned forty-five and life was already a cortisol-fest of work, kids, step-kids and other people’s baggage. How would I juggle all those balls in the air if I couldn’t see them? I felt the walls of the small office closing in.

Like many women, I’d started disappearing in my forties. One minute I was clearly visible, with the confidence of a woman who knows that. The next, heads failed to turn, and I was often overlooked in a queue.

Worse, though, was the invisibility cloak I seemed to be wearing at home. At forty, I’d fallen hook, line and sinker for a brilliant but damaged man. I found myself not only raising my own two sons, but also two stepsons, while carrying the full weight of the household chores and the family’s complex emotional dynamics. Any attempt to address this and ask for more equity was met with gaslighting and stonewalling.

I was exhausted, perimenopausal, and begging for help, but no one could see me. Eventually, it dawned on me—I was invisible, and like countless women before me, I was just meant to accept that.

Until my optometrist discovered an unusual pigmentation in my retina that presented as a degenerative eye condition, and I was faced with the possibility of losing my sight.

Retinitis Pigmentosa, or RP as it’s known, is a group of related eye disorders that cause progressive vision loss. There is no treatment, and no cure. Apart from the pigmentation in my retina, I had two of the main symptoms: an aversion to glare and night blindness.

However, there was no family history, and I could still spot a Happy Hour sign three blocks from a bar, so surely there must be another explanation. With the internet failing to provide answers, I instead had to wait and see what the next tests found.

Wait and see?

During this time, I was acutely aware of references to sight in language. I’ll see you later. Look here. Nice to see you. Focus on this. See what I mean?

This got me thinking; what does it really mean to see? If I was going to lose my sight, how would I see things? How does one see without sight? How would I see myself?

For just under three months, I obsessively researched sight. I read all about visual potential optometrists, natural eye care, the eye body connection and integrated healing. I read about blind people who had been taught to see through their chest, and programs teaching children to move around with blindfolds on.

In England, one school teaches children to identify shapes, colors and even read books while blindfolded. Researchers in Israel taught subjects to see everyday images and faces using soundwaves. In Indonesia, a martial art called Merpati Putih is well known for training sight-impaired people to move freely using vibration awareness. A German woman with a diagnosis of cortical blindness also had dissociative identity disorder, and one of her personalities could see.

I read the works of specialists who were taking ophthalmology into new realms, merging consciousness and vision. Was our vision simply a reflection of our reality? Where is the mind’s eye? Do we even see with our eyes? These were questions I began to ask.

Although I’d spent years studying various metaphysical and spiritual paths, I gained greater clarity in these three months than the previous two decades. I had a shift in perception, where I stopped asking how I was going to handle losing my sight, and instead asked myself how I already saw the world.

And importantly, why I saw it that way. It became clear to me that my view of the world had been forged in the flames of a traumatic childhood that had never been addressed. Not really. Not the violence. Not the deeply ingrained beliefs I held around relationships and my own self-worth.

The child who tried to placate or sober up a drunk father was still saving the men in her life. My reality reflected that with the choices I made and the relationship I was in. I gave so much of myself constantly that it was no wonder I was invisible.

I began to view myself differently. A kinder voice emerged over the din of self-loathing. I began to observe my inner programs and actively change them. I was shocked by how hard I was on myself so I started to rewire my neural pathways with reminders of how strong and smart and unique and whole I am.

Like many women in their forties, I’d also been critical of the march of time across my face. But now, I spent an inordinate amount of time looking in the mirror, memorizing my face. I felt a deep affection for everything I’d previously perceived as flaws.

I realized that I really wanted to see myself age. The thought of missing out on that shook me to my core. It was as though a great gift was being taken away from me and I’d do anything to have it back. And if I wanted to see myself age, why criticize it. Or erase it.

Three months later, I arrived at the Center for Eye Health and sat through a series of tests on various machines, including one where a specialist placed gold electrodes into my eyes. I’d been told the results of these tests wouldn’t be shared with me for a week, so imagine my utter surprise when the specialist said:

“You don’t have retinitis pigmentosa.”

There is more to the 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. And then, once I’d stopped, I looked around me and realized how differently I now viewed everything and how different I was.

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. How the world sees us, how other people see us, is meaningless. What’s important is how we see ourselves. We must be visible to ourselves.

It took several months for me to wake without the weight of that misdiagnosis. I continued to question my view of the world and wondered how best to process the experience. I wrote a short story about a woman called Tilda who was becoming invisible. To find herself again, that Tilda went to Paris, but true healing is never that simple or linear.

My blinkers were now off, and I spent the next seven years facing my past, my choices and myself. I left my relationship. I rebuilt my life. I discovered just how resilient I am.

Tilda was with me throughout it all and I began to see there was a bigger story to tell. Eventually, I realized that the character of Tilda was no longer separate to me—she was me, and as it turns out, she is many women. The horror of Tilda’s story is just how ordinary it is, and yet, like Tilda, I’m proof that can change.

I’m able to write about my past, speak about it at events, because of the journey I’ve written about in Tilda is Visible. And, incredibly, I’m visible again. It took the threat of losing my sight for me to see myself clearly. I like what I see now.

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Tilda Is Visible by Jane Tara is available via Crown.