I have wanted to write this for some time now. Picture me as the classic writer scrawling across reams of paper only to scrunch them up and throw them onto a colossus mountain of discarded words. I don’t know why I can’t get such a simple story written down. Perhaps it is because there is no way to tie it up into a happily-ever-after. In fact, there is no neat way to tie it up at all, no revelation, no satisfaction, no ending.
But I have to find a way to write it down because the deck has a name, and it is an important name to me. I am uncomfortable with people assuming I have chosen its name because it sounds mystical or arcane. I am worried that people will think I am being flippant about the low vision community. So, here it is in all of its messy, incomplete glory: the story of how the Blind Tarot deck found its name.
It started with a blur.
I was studying to become an editor and I was pretty good at it at first. But whilst I was happily wrangling storylines, a steady stream of misplaced letters and wily commas ducked between my legs and dashed away over the horizon. Even when these mistakes were pointed out to me, I struggled to see them. If I kept my eyes dead still, I could see them sitting there glaring at me defiantly, but as soon as I slid on to the next word, they slipped under the white light of my screen.
I mentioned to my doctor in passing that I thought I needed to level up the prescription on my reading glasses. When he asked for more details, I found myself at a loss to explain the actual problem. It is a feeling I became all too familiar with over the next year.
‘I think it’s my left eye, but it could be a little on the right? My eye has a… a something. Like a blur? No, not a blur, but a patch that doesn’t see right. It’s up the top somewhere. I can’t look at it straight on – well, you know what I mean – so I can’t really see where in my eye it is or anything, but I know I am missing things in that direction even though I can still see everything around them. I don’t know. It’s just hard to see, I guess.’
It turns out that doctors hear all kinds of exciting and terrifying alarm bells when someone mentions vision loss in only one eye. At the optometrist half an hour later, a field of vision test picked up some minor discrepancies. She wanted me to follow up with a specialist, not because there was anything to be concerned about, but to be on the safe side.
That specialist would later go on to tell me that I was ‘so very close to being normal, whilst still being abnormal.’
I told him that was the story of my life.
For the next few months, I was run through dozens of tests with names that made me question whether the doctors were making fun of me. I was kept in the dark most of the time (both literally and figuratively – eye tests are not for the nyctophobic) because no one wanted to worry me with what they were testing for. Needless to say, Dr. Google taught me a lot about optometry in those months. And I was still scared.
I waited for the next test and increased the font size on my phone and computer.
After lying in a MRI tomb trying to read the expressions on the technicians' faces in the mirror above me, they ruled out a brain tumour.
I waited for the next test and stopped driving at night. Or in the rain. Or at dusk. Or dawn.
After staring unblinkingly into machines as they photographed my eyeballs, they ruled out retinal disease.
I waited for the next test and gave up on becoming an editor.
After six months on a waiting list, five hours in a waiting room and an hour of tests with electrodes attached to my eyes, they ruled out electrical issues.
The specialist-specialist sat me down to discuss my results.
‘Your tests are normal. That’s it. There is nothing left to test for.’
I know it sounds strange and ungrateful, but throughout all the worry of brain tumours and blindness, that non-answer was one of the things I feared the most. That's it. I really was just losing my mind. I had become so focused on my eyesight that I was starting to see things that weren’t there. Or rather, not seeing things that were there. I said as much to the doctor, who was surprisingly unsurprised by my reaction.
‘Every year, I see three or four people just like you,’ he told me. ‘People with the exact same symptoms and the exact same negative results. It may well be that we just haven’t developed the right tests to diagnose you yet. I know you want answers, but let’s check you again a year from now and see how it goes.’
I was so disheartened and frustrated that I left without thinking to ask him what had happened to those other un-diagnosable people.
We all know that we are only one slip away from disaster. That I have made it through this much of my life even somewhat unscathed surprises me. How many times have I slammed on the brakes just in time to avoid a collision? How many times have I read about someone else's grief and felt relief that it wasn’t my own? Each time, I have felt the whisper of mortality raise goosebumps on my skin, but nothing more.
But I was watching the world become less tangible around the edges, and losing the faces of my loved ones when the sun shone from behind them. That was a harder decline to ignore. And so, I started the Blind Tarot out of the fear that one day I might not be able to draw and I might not be able to express the way I see the world.
A tarot deck is comprised of 78 opportunities to capture your worldview. It encompasses every aspect of life: the mental; the emotional; the physical; the material; the spiritual. If there is a clock counting down on my eyesight, this is a project that can outlast the final tick. It is something I can one day refer my children to if I don’t have the right words to express my experiences of love, or peace, or anxiety. It is something I can refer myself to when I think I am dreaming far more than I am achieving, or that I am not doing enough with the time I have been given. It is a deck created out of fear to provide me with hope. So I named it after both of these things; the fear of going blind and the hope that something will lead me on through the darkness.
The year has almost rolled around and I am due for those tests again in a couple of months. Am I slowly going blind? I will let you know if I ever get an answer. But I'm starting to think that the answer isn't nearly as important as my reaction to the question.