Jutta's Story

"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... )

person holding woman's hand beside sea while facing sunlight

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

My Story – My Experience

Just a few introducing words …

My name is Jutta. I was born in Germany in 1957, so now I am 61 years old.

For the last almost 30 years, I have been working as a freelance translator in the field of IT (Information Technology) and software localization. I always loved my work, even extremely long hours at the computer due to the time-pressuring nature of the industry. 

Speaking of "my experience" - yes, all of that is just my own experience, and I cannot speak for other people in general. The experience might be different from person to person and might be depending on the person's personal and work environment, even during the earlier stages or less serious vision loss.

But at least I want to convey my impressions, so maybe this helps to create a little more understanding for this kind (and other forms) of visual impairment. 

Person looking throu peephole

20 Years Ago

Almost 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 (see Amsler Grid Test). 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.

On-the-road experience

At some point, there was that alarming moment. Being a passenger in a car, I rubbed my "healthier" eye, i.e., watching the street with the worse eye only, and suddenly a truck driving in front of us was "gone". Ooops – that's not so funny anymore, even though I tried to take it with humor: "I'll always have a clear run".

Over time, vision also deteriorated in my other eye. Just that instead of a "blind spot" it rather was a "blind circle" (see my own "field of vision test"). This circle had a kind of a "hole" to look through. And also, there was still space to look through between the blind spot of one eye and the blind circle of the other eye. But again, overtime, spot and circle became "thicker". The effect was, that this "blind circle" and the "blind spot" of the initially more affected eye superimposed. Similar to a lunar or solar eclipse (as I tried to illustrate here). So maybe you can imagine that for me suddenly part of the whole picture was just gone.

Stop driving

This was the reason why, more than 10 years ago, I had to get acquainted with the idea that I had to reduce driving a car. In the beginning, I still could drive shorter distances with less pace. Eventually, my speed was so bad, that probably most bicycles were faster than me (sigh). Therefor I had to give up driving. That was really hard for me. I loved driving and was used to take my car everywhere.

It had taken me a while to realize that. Roadsides, oncoming cars were becoming harder to recognize, and even when looking in the wing mirror, I was s under a delusion more and more often. Illusion? Yes, I really mean that. My brain seems to play - not always funny – tricks on me. That's how it tricked me over a longer period of time by filling in the "gaps" in the recognizable picture with a "presumable picture". "Beg your pardon?" would be the question right now for sure. Find the answer with respect to the "tricky brain" and illustration is here, because it's a lengthy one. It seems, the brain then just fills the "empty" areas with the "presumable" picture.

Actually quite clever. At least you always seem to have a "complete picture" - but with a small flaw.

It is dangerous!

Attention! When the road looks clear (because everything is evenly gray in the street, or the meadow is green), that does not mean that it actually IS clear. This also means: First LISTEN before crossing the street. It could well be that the clear road was a "deception". You will notice that not lather than when you hear the emergency braking, when running in front of the a second car, because you have seen only the first and the third. But watch out - the next time you move, the picture will shift. That's a bit like playing "Memory". You have to remember what you saw a second ago.

But there is another problem when listening to the traffic: Bicycles and electocars. Harder to hear and estimate the distance ….

Well, now i am not going to drive anymore. I walk. But even that is not necessarily safe. And jobbing or running speeds are not really recommended either.

And at his point, I also want to apologize to all the drivers who slow down and give me a sign to cross the road - Sorry guys, I don't see you in your car….

View through a peephole with almost nothing to see behind it

20 Years Later

Just about a year ago, 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 tried to illustrate the effect here. There it also shows, how it looks on normal print media.

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. 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, 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."

Blurred view of street with people in the evening

And Maybe Now YOU Can Understand ...

Sometines it is really embarrassing when meeting dear friends in the street....

Coffe Coup on a table, only cup is clearly visible in short distance

Impact On Daily Life

Obvieous and not so obvious things I cannot do any more due to my eyesight...

Jutta Miroiu-Dunker