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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.