Maybe you can understand…

Please, let me first apologize to everybody for appearing rude, impolite, arrogant or the like!

person holding woman's hand beside sea while facing sunlight

How embarrassing!

The situation becomes really embarrassing when meeting dear friends in the street.  

How wide is a normal village street? Maybe 5 meters? So imagine this: Walking in the street, I suddenly hear a "Hello". Automatically, I turn around and look in the direction from where the sound came. Well, there is someone. The person comes closer. "Hello" sounds again from the direction where I presume a head, this time with a personal address. "Um. Who speaks to me?" I'm asking myself. A person with head comes a few steps closer uttering "Don't you recognize me?" Oh dear, that's embarrassing. Only at about a meter distance, I could see the face - and it was a person that I know for many years and meet very often.

It is not less embarrassing to go to your favorite place and greet regulars and even acquaintances as if they were strangers over and over again. This happens, for example, when I get in and – partially depending on the light conditions – do not recognize who they are. Only when I hear a characteristic voice or see a typical gesture, it feels like "scales are falling off my eyes".

Characteristic features like being very tall, always wearing unusual glasses or an unusual hairdo and typical gestures and movements help to identify people. A girlfriend at least, perhaps intuitively, did the right thing when we were on a market together. She noticed that I was looking for her but always "overlooked" her, and she did this very typical "Hello, I'm here" gesture. Great! Typical or strong movement is more noticeable than a standing or slowly moving person.

Another situation of embarrassment was, when I was talking to a friend and I just wanted to see her facial expression. For that, I had to "look around the corner" (instead of looking at her face). Poor her, I think she got a bot offended when I actually had this "staring" look above her head to the far corner of the room, in order to see her face. She automatically turned around to the direction I was looking at and I had to explain that I was just trying to see her face. That is a bit difficult.

Leading to arguments!


That's how I even had a few little arguments with my mother. She is over 80 years old and suffers from an MD herself. So we are basically in the same boat. Only our vision is affected in a slightly different way. Each and every time we go for a walk, window shopping or to the supermarket where, for example, I just want to rush somewhere and collect information or things into the shopping cart, I had to remind her again that we shall either meet at a specific point or she has to wait at "exactly" the same spot where I left her. More often than not, she wasn't where I expected her. And when I harshly told her "you did it again – you moved!", she only answered "Oh, I just went to see that-and-that over there. What's your problem?" … 

In addition, I tried to make her understand to wear strong colors when we go out together. This is especially important when she is wearing "neutral colors". All colors seem increasingly "faded" for me. That is, I see them rather grayish (or the "blend" with the environmental colors, as described here), and all colors that are not something like a strong red, purple, blue, or green look grayish. Meanwhile, my mother has understood that I cannot recognize her further down the street, in corridors and among other people at when she is more than a few feet away. But I think she still can find me – "mother instinct" or better vision?

Is it funny?


Having said that recognizing a person in the street is difficult for me, the following image might be funny for a person with normal vision – but not really funny for the person concerned:

Imagine you go for a walk, somewhere in front of you some other people, and you see - depending on where you look at - either upper bodies without legs, or legs that walk without an upper body. Logically and naturally this is not possible. Where legs are walking, there must be an upper body attached to them, and vice versa.

dog wearing glasses sitting in front of book

The "How about glasses?" question


"How about glasses?" - Everyone asks this question. Well, even here the answer is not quite simple. Even though there are many varieties of spectacles, the right glasses for me have yet to be invented. 


Remember, there is no cure for this kind of eye disease. One of my ophthalmologists said it clearly: "No matter which pair of glasses you'll be wearing, you will never be able to see clearly. This is due to the fact that central vision deteriorates and whatever you focus at is more "blurred" or "gone" (which often makes me "look around the corner" to see something a bit better.

But still, together with ophthalmologists and opticians, who have been (and still are) anxious to bring some contrast and sharpness into the "gray" again and again, we have tried all kind of adjustments. By now, they are running out of options. I had new glasses every few months - and they were "kind of good" for a few weeks only…

And apart from that, people are very surprised when you have your spectacles on your nose and you still have to say that you cannot see this or that. They probably think: "That can't be true" - or "Get yourself proper glasses".

Maybe it should be mentioned that my glasses would have had a power of -0.5 dpt for far distance, which is very little, and my reading glasses have 2.5 dpt, which is quite normal for presbyopia at my age.

Sometimes I just say: "With glasses, I only see better what I do NOT see". In other words, a little improvement in peripheral view makes me realize even more, what I don't see in the center…. And once people roughly understood this, they come up with the next question: "Why not change your computer setup or become an interpreter?" br>

closeup photo of woman sitting on concrete pavement with legs crossed and head bent forward

Despair and Other Emotions


Oh yes, it's not easy to admit, but at times I was desperate.

Impatience


Every here and then I had my "lows". Be it because I was not able to put on eye make-up for when I was invited to a function. Not being able to put a nail to hang a picture, or not being able to cut along a drawn line. I am more and more bad-tempered, edgy, and impatient.

Burst into tears and anger


These not so nice qualities paired with a feeling of incapability lead to "explosion" many times. So, for example, Xmas eve at friends two years ago. I was not familiar with the apartment house and not aware of the tricky layout of the floors. When my mother and I left, we took the lift. Our taxi was waiting outside. I pressed the button which I assumed would be for the ground floor (actually, I did not see the buttons well). When the lift door opened, we found ourselves in a basement level leading to the other side of the block. And the taxi driver, who called in the meantime, did not believe that we got "lost in the staircase". OK, back into the lift and up again. At the next stop, I opened the door and tried to see, where we ended up. It wasn't the correct floor either. But unfortunately, my mother had closed the lift door and continued travelling further up. Now what? Where was I, where was she? Out taxi was long gone It was some kind of an odyssey to find ourselves and friends' apartment again.

But when we got back in, I just burst into a flood of tears. Even though my friends tried to calm me down and explained, that the layout of the house is very tricky, I just felt that I was worth nothing, not able to use a lift, not able to get my mother the right place, not being able to do anything right…. And I blamed everyone around, that they have no idea how I feel and what it is to lose your vision. – Well. I did not use the nicest words, but unfortunately they really do not know what it is like ...

Unfortunately, this happens to me quite often and I haven't learned yet how to control that emotion.

Better cancer than blind


I even uttered things like "I'd rather have cancer and know I'd only a few months to live, than not being able to see".

This for sure is one of my most stupid thoughts, and I hope I will not come up with more like that …

Fears and worries


"Legally blind" does not mean, I am totally bind. But I am and feel restricted in what I can do. Therefore there are quite some fears and worries concerning different aspects. 

On is, that I'm afraid I cannot help my mother if she needs help quickly to but a bad-aid at the correct spot or remove a sting from her finger or the like. Just to imagine some "normal" situations …

The other is, that I don't know how to make my living until (and after) retirement age. Besides that, I would not know what to do with all the "spare time" I will have when I'm not working …


Living in a "cloud"


And there is another weird aspect of mental state. I mostly feel like in a bubble or in a "gray cloud".

Since focusing at something is impossible and I would always have to "look around the corner", I usually keep my eyes rather relaxed when walking or sitting somewhere. I have the feeling, that this puts me in a kind of "standby" or "sleep" mode, meaning that I do lose interest in things around me, because I'm not "focused".


Jutta Miroiu-Dunker