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May 30, 2020

Jutta's Story - 20 years after being diagnosed

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"Da steh ich nun, ich armer Tor, 
und bin so klug als wie zuvor."
(And here, poor fool, I stand once more,
No wiser than I was before... )
[Goethe]

   

How can you explain to another person what you see (or better: what you do NOT see) .


Funny and not so funny situations due to visual impairment
by Jutta Miroiu-Dunker in August 2018




 Here just an excerpt to make you curious:

20 Years Ago

 

About 20 years ago, when I was in my early 40s and living in Israel, I had a few routine examinations at the ophthalmologist. As it seemed to be something unusual to him, he referred me to the ophthalmic clinic of the University of Jerusalem. They did all kinds of tests and examinations and told me, that I got a macular dystrophy - an inherited form like e.g. Stargardt's disease. A detailed diagnosis was not carried out. In principle, this is irrelevant, because any form of this eye disease cannot be cured. One eye was more affected than the other. However, it was immediately brought to my mind that the degeneration of the macula would progress slowly and that the second eye might not be spared. The only "good news", they said, was that most probably I would not go totally blind, since peripheral vision will usually remain. 

The doctors just were surprised that I was already in my early 40s and nothing was noticed ever before so. They told me, that this type of "juvenile macular degeneration" (in contrast to the better known and more common AMD, i.e., age-related macular degeneration) is usually noticed in children/adolescents.




In the beginning…

 

At first, I had indeed not noticed any problems. Just the usual "fatigue" after long hours at the computer to do my job. Well, when the eyes get tired, straight lines are just don't look straight, but a bit bent. This condition stayed that way for a while. Until that key moment about one year later... 

Everyone knows a peephole in a door. And probably, we always use the same eye to look though the fish eye. So do I. Then, one fine day, it looked through the spy - and the hallway is gone. "Yikes! There always was something to see!" I looked again and saw - nothing. So I thought it might help to clean the fish eye, did that and looked once more. And again - nothing. Strange ... Eventually I looked with the other eye – and, lo and behold, the hallway was back! 

I see! So that's how it is when the central point of the retina (the macula) does not work properly anymore. Suddenly there is only a gray spot. Well, as long as it's a small spot and you can use the other eye to look through a peephole, it's not that bad yet. 

Unfortunately, over time, this small spot in the macula grew slowly but constantly. That is, the spot that only covered the small hole of the fish eye became a larger spot. And also, this spot has different impact over distance.

 

 



20 Years Later 


Just about a year ago [this was early 2018], actually as continuation of the previous chapters, the situation worsened quite more than just a bit. 

Well, I could still recognize text, even though even black text seemed "grayer and grayer". I could still work on the computer as a translator. But for how much longer? I had no idea. For work I changed the monitor twice within the previous half year - now it is a 48"curved TV with originally 4k resolution. Thus, at least accommodated all required windows and data on the screen even at lower resolution (say larger font). But still I had to change the resolution every few months. And "looking around the corner" when reading or writing is more than exhausting physically and mentally. 

I was, however, hoping I could continue like that a few more years-Maybe even more than the 3 years until retirement age. Legitimate hope... 

With all setups involving glasses, different computer monitors, font sizes, and you name it, work is literally just a lot of headache.

I know, my eyesight will never get better. Slowly but unstoppably, it becomes even more difficult to see what is in front of my eyes. All this, even over the last few years, obviously had and has big impact not only on my work but also impact on everyday activities. And this fact does often drive me to the edge of despair, with all sorts of emotional imbalances.




…at the end

 

Today, after having worked with this condition worsening until last December, I had consulted my ophthalmologist towards end of the year [this was still back in 2017]. But the new glasses I got for the computer were not really effective, so it became more and more stressful and basically impossible for me to do my job properly. 

Well, so I was hoping my optician could come up with something. But the always optimistic optician - before we met, he had even set aside a nice new spectacles frame. - checked my eyes and had to admit he had no more solutions for me. No new glasses or the like that could help me anymore. He really felt sorry and somewhat shocked. 

OK, next step was to go back to the eye doctor. And the same thing – no corrective lenses to help me. He, too, seemed surprised and just asked "How do you still work?". Not that a really had an answer for him … 

Then now, a few weeks ago[this was early 2018], during a routine check for my mother that I attended, my ophthalmologist just turned around to me and said: "Your mother's eyesight is much better than yours." And he added: "Are you still driving?" –"No, surely not", I replied. "Very good", he continued, "Because I know a lot of people that are legally blind and are still driving a car."




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About this text
Jutta's Story texts were originally written in 2016-2017.
Since end of 2018 I am officially legally blind.
And I am proud to be a member of the Malta Society of the Blind.

May 29, 2020

How you can trick yourself

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How easily you can trick yourself and others.

The "look around the corner"   that I always mention, can trick oneself and others. For example:

 

… at the optician

You may also trick an optician or ophthalmologist to a certain extent. 

I found myself (with the still better functioning eye) "automatically" looking somehow next to letter chart of the eye test, and - thanks to years of experience and exercise – albeit mainly unwittingly - recognized the letters quite well. 

I did that so well, that just a couple of years ago, an ophthalmologist told me that I could still drive a car. 

"Ha-ha", I thought. If he knew how much I really do recognize, and why I gave up driving. 

The letter charts still have a good quality - they are static and have a certain size. They don't disappear as fast as on a large poster, where suddenly some letters are missing. 

And each and every twinkle of of the eye will change the picture...

 


… in everyday situations

Quite a few years ago, I was in a big electric store looking around for the TV offerings. 

"Wow, how cheap are the 55" smart TVs!" 

Well, that price changed immediately, when I stepped back a few steps. I had missed the thousand’s digit on the price tag.

Only when changing the line of sight and distance, I noticed the mistake... 

What a pity. 300 Euros would have been a good bargain.

 

 

 

 

 

 

 

 

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About this text

Jutta's Story texts were originally written in 2016-2017. 
Since end of 2018 I am officially legally blind.
And I am proud to be a member of the Malta Society of the Blind.

 

Despair and Other Emotions

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Emotional Roller Coasters.

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

Here are just some examples, how visual impairment affected my mood...


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".


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About this text

Jutta's Story texts were originally written in 2016-2017.
Since
end of 2018 I am officially legally blind..
And I am proud to be a member of the Malta Society of the Blind.

Is it funny?

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Seeing what is in front of you is quite a challenge sometimes...


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.





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About this text

Jutta's Story texts were originally written in 2016-2017.
Since
end of 2018 I am officially legally blind..
And I am proud to be a member of the Malta Society of the Blind.

Maybe you can understand...

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Maybe you can understand. How embarrassing...

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

 

Being visually impaired 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 bit 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.



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About this text

Jutta's Story texts were originally written in 2016-2017.
Since
end of 2018 I am officially legally blind..
And I am proud to be a member of the Malta Society of the Blind.