(Revised/Updated on July 30, 2020)
(Audio version available HERE)
Good and bad days.
Everyone has them.
The good and the bad days.
It has been 3 years since I got hemianopia.
It can very well happen that for days I hardly have any problems with it.
Of course, I suffer from it and it hinders me in my daily life.
But there are days when everything goes ok.
In 3 years, you are slowly getting used to it.
But then suddenly …..
For example, I can just do my thing for several days.
And then something happens that confronts you with the hard facts.
You then will be aware again of what you have.
I will give an example.
I can go out.
Just go for a nice walk, go shopping, walk to the mailbox, etc, etc.
Until I want to cross the road.
I look to the left and see a few cars in the distance and there is enough distance.
I mean there is enough time for me to cross the road.And then when I want to take the first step, I suddenly heard something.
I look to the left and I see a car, very nearby.
I never saw the car the first time.
It was in my blind spot.
If I had not heard this, I would step out on the road.
You get the shock and you become careful again.
You are aware again of how “vulnerable” you are.
Because of that, I feel a bit down.
And I am blaming myself for not paying attention.
Sometimes I try to read something.
And what I had read I would tell it to someone else.
And then they will say that there was more.
There was more?
So I look again and indeed, there was more.
This happens sometimes several times a day.
That is not a good feeling.
You feel then, how shall I say it.
“Less” is the word that comes to mind.
And this sets the tone for the rest of the day.
It also takes a while before you feel good again.
It is almost the same for watching TV.
Because my Hemianopia is on the right side, I sometimes miss things that are happening on that side.
Sometimes I don’t even notice that something had happened there.
It also becomes difficult or annoying with subtitles.
If it is a lot, you don’t even get the time to read everything.
Before you reach the end, it is already gone and there is something else.
Not always nice.
For me, a lot of movies and/or series are dropped right away.
The ones that I watch the most are the Dutch and English movies.
The subtitling are not necessary for this because I speak and understand both.
But then suddenly in the movie, or whatever, they speak a different language.
For which subtitles are then shown.
And there goes your good mood again and out of frustration, I stop watching.
Unfortunately, nothing can be done about this.
This is also when I busy on the computer.
My profession was in IT.
But for that, you have to read and watch and learn a lot.
All this is now going a lot slower and I get frustrated quicker.
So my profession had become a small hobby.
But sometimes some things interest you.
And then without realizing it, I am sitting behind the computer for a long time.
As a result, I later have a headache from all time trying to stay focused.
Sometimes it goes well with aspirin, but often this also doesn’t help and your whole evening is ruined.
In the beginning, I had a lot of problems with this.
I couldn’t believe that something didn’t work out or that I had a headache for the rest of the day.
But over time, you know it and you try to accept it.
Of course, this does not go very well, but what else can you do.
The conversations at Bartimeus have helped with this.
I now know that I shouldn’t be that hard on myself.
But that is easier said than done.