Note: As a general rule, I do not like talking about my past. When I make an exception, it is almost always because a story brings me a great deal of joy. I offer this one in hope that it may do the same for others.
* * *
On a Wednesday, a few weeks ago, I was told that the blindness in my right eye would be permanent.
I’d had troubles with my eyes since I was 15, and I had become legally blind in my right eye around the age of 20. I was unable to afford ophthalmology, and so let it be. When I was introduced to a bulk billing ophthalmologist a few years later, he was concerned. The swelling of the optic nerve was pronounced. He told me repairing it would take a miracle.
Some years later, steroids, drops, needles inside and around my eye cavity, and here I was, sitting down and being apologised to by a doctor who was adamant that he had failed.
I was relieved.
* * *
When we tell stories, blindness and disability are signs of either great virtue, or of terrible villainy. You are a struggling, innocent and blind orphan, or a vicious eye-patched pirate. In one tale, messianic Keanu Reeves saves techno-futurism, and in another evil Morty rules over techno-fascism. You are Tiresias, bestowed with blindness, knowledge and prophecy of Apollo, or you are Oedipus and, after ignoring Tiresias’ prophecies, stab out your own eyes after accidentally fucking your mum.
In reality, my blindness has just meant a lot of tests and a lot of time in hospital.
* * *
I had my first surgery when I was sixteen. I had a steroid injected into my eye socket while under local anaesthetic. By last reckoning, I’ve had some variation of the procedure performed at least ten times, on either eye, above, below, around, and occasionally through the eye itself. My passport photo for five years was of me with one bloodied, bruised eye. My right eye.
I never minded how I looked. Often, I quite enjoyed it. A bloodied eye had starred in two short films I had made as a child. I watched Pirates of the Caribbean and went to sleep dreaming of eye patches and peg legs.
When I was first diagnosed with Multiple Sclerosis, I had a number of tests done. The one that sticks in my mind, even moreso than the very impressively sized needle that was stuck in the base of my spine, was the eye reaction test. I was exhausted. I hadn’t slept properly since first coming to hospital five days prior. I was far, far away from home. The doctors had led me to a room, and told me to look at a moving red light for what seemed like an eternity. I was told that I wouldn’t be allowed to go home until I had done it. It took far longer than it should have. It hurt, I lost concentration, I nearly fell asleep twice, and I got into an argument with a nurse, asking whether or not the test was necessary and whether I could do it after I had gotten back home to Dubbo. Apparently, I could not.
I found out years later that the test was to set a baseline for eye reaction speed. The idea was that, this way, doctors would be able to pre-emptively tell if I was beginning to lose my sight.
I have never done the test again, and, at least to my knowledge, have never been compared to that baseline. And I’m now blind in my right eye.
It probably could have waited.
* * *
When I was twenty-two, I met another trans disabled person. For the first time, it was delightful talking to another person about my myriad disabilities.
When I changed my name to Margot, they called me Peg, and then Peg Leg. I remembered my childhood dreams and always smiled.
I reminisced with them about how, years earlier, I had gotten a team together for the 24 hour charity mega swim for research into Multiple Sclerosis. On the day, only I had turned up on time, and having not swum a single lap of a pool since high school, I had been responsible for the first hour and a half of the team’s contribution. I spent the entire time wondering if any other team members would get there before the twenty-four hours were up, and feeling quite certain I had well and truly earned any medical advancement that would come out of the fundraising drive.
I talked about how I had learned to talk and socialise with retirees from waiting rooms at the eye clinic, where I would spend upwards of four hours every few months, and during which the elderly were my only company. “You’re a bit young to be here” they would say. “It’s difficult, but I try to manage” I would reply, attempting to contort my face so as best to resemble the piteous blind orphan. I got a villainous glee from exploiting their pity for Werther’s Originals.
* * *
When I got home from the ophthalmologist on Wednesday, I took a moment to survey my face in the mirror with my one good eye. The pupil has not been a full circle for at least four years. The iris does not retract past a certain point, and so the pupil is shaped more like an oval squashed into the top half of my eye. There is still a thin trail of blood from the last surgery I had a month ago that traces the left side of the iris. It is slightly bloodshot, more likely to do with lack of sleep than needles, but otherwise seems unremarkable.
I know, however, that it is remarkable.
One of my eyes is a vestigial organ, and ostensibly there for decoration.
* * *
Up until Wednesday, I wanted my eye to get better. Now, I feel relieved that the impossibility of a miracle cure is official. I have been blind in that eye for years now, and so my life will not change. View finders in cameras, seemingly all designed for the right eye, will still give me the same amount of trouble they always have. I can read books with my left eye. When my left eye gets tired of fighting the distortions in my right eye, I will move to the computer and increase the text size in a pdf. When that too becomes exhausting and distorted, I’ll listen to a podcast, or I’ll go to sleep.
I can still see some things out of that eye, though not in a way that might be improved by glasses. It all looks different. More distorted than simply blurry. The image is bent, uneven, and torn. Circles look like squares, squares can look like triangles, a straight line bends, twists, becomes thicker, and then thinner. My vision has been turned into a Salvador Dali painting, though with less intentionality. Beautiful, and messy, and absurd. It suits me.
Maybe this finality will mean fewer surgeries. Hopefully it will mean less of the doctor.
Ideally, I can finally justify investing in a decent eyepatch.
