I can’t see with my right eye and did a bunch of operations, but it didn’t help 

WHAT I CAN’T SEE WITH ONE EYE was discovered quite late – in the second or third grade. But actually, I was born that way. A couple of years ago, I got carried away with genealogy and found many old photographs of my relatives – many of them had vision difficulties, so my disease is definitely hereditary. I remember that as a child I covered my eyes with my hand and imagined that I could see through it – it is possible that I even told my parents about this, but they did not understand that it could be something serious.

In Bishkek, where I grew up, there were two main hospitals: a public one and a private one, each of which believed that only they were treating correctly. I was little, and my parents are very kind and gentle people, they trusted doctors and did not want to argue with them. For some reason, they didn’t take me to Moscow for examination. At the age of nine, they decided to have the first operation, but after it it only got worse: a secondary cataract appeared – the eye turned white. When I grew up, I realized that they pulled out my native lens and inserted an artificial one – the cornea began to protect itself from a foreign body and grow cloudy and over time it completely tightened. The cataract was removed several times, but it appeared again – as a child, I underwent three operations. Because of them, it seems to me, I now relate to pain calmly: after terrible injections in the eye, epilation is not scary at all.

After the operations did not help, both the doctors and the parents resigned themselves to not seeing the eyes and not seeing, we live on. Over time, strabismus began to develop on it – it still does not work, so the body began to reject it little by little. Myopia progressed on the healthy left eye – but at the age of eighteen it stopped at minus 3.7, which is great. I never worried about my peculiarity, but for some reason other people thought that I was worried: when I came for new glasses, ophthalmologists suggested that I make chameleon glasses with tinted glasses to cover my “unaesthetic” eyes. Then we sold lenses – when I wanted to try them, they told me: “What are you, you need to hide everything behind the glasses”. I sincerely did not understand why – and these proposals made me very angry. Why should I cover something than I am worse than others?

When I moved to Moscow and started living on my own, I decided to have an eye surgery for the last time, just to know that I had done everything I could. Conducted a research and stopped at the Munich University Hospital. It was then that my husband’s parents gave us money for an apartment in Moscow – and I used part of it plus my own savings for the operation. In Germany, treatment is expensive, and there is also such a principle that if the operation costs four thousand euros, you must leave another four thousand as collateral – in case something goes wrong and you need additional treatment. Since my case is difficult, Professor Priglinger, the head of the ophthalmology department, took care of my eye.

I was put on the waiting list for a corneal transplant. Interestingly, most often the cornea is taken from those who break on motorcycles, and the transparent and thick cornea is not necessarily from those who are younger – this is genetically determined , so that even an elderly person can be an ideal donor. It is arranged like this: when a suitable cornea appears, they immediately call you and you urgently fly to Munich – it cannot be stored longer than three days. You do not need to do any tests, ECGs and other things that are required in Russian hospitals: you just fly in, they tell you about the risks, introduce you to the anesthesiologist and operate the next day.

I remember that as soon as I woke up in intensive care, I asked the nurse how it went – and she somehow hesitated, which made me very alarmed. It turned out that the operation was unsuccessful: although I usually have low blood pressure, on the operating table it suddenly jumped and a retinal hemorrhage occurred. After that, for some reason, I had wild headaches, my eyes could not see anything. At the same time, the corneal transplant itself went well: they took out a secondary cataract, pulled out an old artificial lens, which was directly adhered to the iris. Then it was clear that pieces were torn off from the iris. I was terribly worried. My operation was before a long weekend, and the professor went to his family and five children in Linz – but when they told him about my depression, he rushed at eleven in the evening to talk to me and calm me down. It was very pleasant and unexpected: when he arrived, I was in the shower, so I talked with him with a towel on my head. I suspect that in Russia they would hardly have cared for me that much. I also really liked that German doctors do not look for the guilty and do not scold Russian doctors who once did something to me wrong – they just solve the problem that exists here and now.

Time passed, but the hemorrhage did not dissolve, the eyes saw almost nothing. I returned to Russia and asked the professor to advise a local knowledgeable doctor who could observe me. So they found a doctor for me, whom I still see. She is super-duper, but rather tough – she immediately told me about all the risks in the forehead, and I often left her with tears. In Germany, they also tell everything honestly, but somehow more gently – maybe because all doctors are trained in communication with patients and psychology. Until the last moment I believed that everything would work out, I flew to Germany many times, I underwent several small operations, then a large one, for many hours, when the retina was somehow jewelry, bit by bit, collected right in the eye. In the end, when I no longer had enough money and I could no longer get into the money for an apartment, the professor called the accounting department and arranged for my past deposits to be counted as payment for a new operation. We still didn’t have enough money for one of the operations – we had to collect it from friends. It immediately became clear who is a friend and who is not.

After the operation, it was not clear whether the eye was atrophying right now, or whether it would still get out. It was very difficult: I lived in a friend’s apartment in Austria, while he was away, I was all the time alone and constantly looked at my eyes in the mirror, trying to understand what was happening to him. Now my eye is not very open, too, but then it was quite a crack: if the pressure normalizes, the eye opens, if not, then that’s it, it’s finished. This period was the most alarming, after which I even got gray hair. But on the other hand, I seemed to be reborn. I coped in different ways, went to church every day, perhaps thanks to prayer and religion, I felt better. In Moscow, I went to the Yelokhovsky Cathedral at Baumanskaya – I also had blackheads from the operation, smudges, in general, I looked impressive. Because of my bruises and a Kyrgyz passport, there were problems at the customs in Moscow – I was constantly driven for additional interrogations at the border, they did not understand why a girl from Kyrgyzstan was always going to Germany.

My eye is now filled with silicone oil to keep the retina in place. However, due to the fact that silicone is still toxic, my donor cornea still clouded. Despite all the operations, I cannot see anything with my right eye: perhaps I will see the light from the right side if they shine a bright lantern right into my eye.

In my last meeting with the professor, we discussed how this whole eye and treatment failure affected my life. We came to the conclusion that some things are just worth letting go: I was lucky in many other aspects – I have a wonderful family, a husband, a job I love. I was always unlucky only with an eye and documents, which I can never do correctly and on time (for some time I even had a ban on entering Russia). I fought, I am a fine fellow, but you cannot endlessly heal the eye – I have already accepted myself with it, I have to live on. I do not regret that we spent so much money on operations – but I know for sure that I did everything I could. I had a change in consciousness, now I have a new attitude to myself and my health. Previously, I suffered from an imposter complex, worried about trifles, and now I accept myself completely.

Of course, I worry about what will happen next: the eye can atrophy – most likely, this will happen. I’m afraid of the day when the eye will need to be removed and instead of it there will be a cave where I will insert the prosthesis. No one can say for sure: someone believes that I can walk with my eye for the rest of my life, others are sure that sooner or later it will die. If this happens, I will feel as if I have lost – so I try to tune my body so that it does not reject my eyes. I don’t want to have some foreign body in my head, not far from the brain.

Now I work in an atelier: my parents are shoe makers, my brother is a tailor, and we work in a small company that makes custom-made suits in the premium segment. It’s funny that I constantly communicate with very rich people, but at the same time I’m not shy at all. In addition to the eye, I also have a diastema – a gap between my teeth. But you can not dye your hair in bright colors and not get tattoos – in my appearance there are already enough bright features, you can not add anything. At work, my features even help: while a person is looking at my eye and diastema, I have time to start a conversation and convey the necessary information.

I remember only two cases when people somehow offended me because of my eyes. The first was on the Strelka photography course. We were on the street, and I was wearing sunglasses, the cameramen followed me, making a report on the event – and then I took off my glasses and noticed that they were looking at each other. Although they still asked if they could film me, no one else came up to me, and the next day another boy was filmed in the video. There was also a case when a guy wanted to meet me on the subway, and when I looked up, he said: “Wow, shit! Well, u *** shte! ” Then I was already bolder – I photographed it and posted it on Facebook. Let such idiots know by sight.

In general, people rarely react negatively to me, they often give compliments. Usually children look at me – I don’t take offense at them. I feel uncomfortable only if the child looks with horror – and if with curiosity, I can somehow joke, wink or say: “Well, yes, it happens!”

A separate topic is visits to an ophthalmologist. Sometimes I feel like a monkey in a zoo: when I come, they invite all graduate students, interns and take turns showing my eye through a microscope. Now, when I come to Elena Nikolaevna, she shows everyone how I underwent a corneal transplant in Germany. I understand that this is in principle useful, that they need it in order to learn, so I treat this with humor. Recently I had to go to another ophthalmologist to get a certificate, and there was tin: first they told me that I had a “mess” in my eye, and then they offered to put a scleral lens on which an eye was drawn to “hide my flaws.” But I already feel beautiful, I feel comfortable, why bother with your opinion? They also told me about the gap in my teeth – when I came to treat some small caries, the dentist said: “You actually need not to see me, but to the orthodontist.” Why should I close the gap? Spitting through it is cool!

Now, if I want to somehow isolate myself from the outside world, I sometimes put on glasses with diopters. But at such moments I have a feeling that I seem to hide myself, pretend. The same with photos on social networks – which one to put on an avatar? If you lay out a close-up of an eye, everyone will think “here she is boasting with her eye, she’s already bored”, if, on the contrary, a photo in profile is as if it were dishonest. So I still doubt how to position myself on social media. It sucks when you see one person in a picture, but in life he turns out to be completely different – I want to be real everywhere.

local_offerevent_note April 7, 2021

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