I have Hemianopia

(Revised/Updated on July 28, 2020)
(Audio version available here)

I have Hemianopia.

The first days after the brain hemorrhage was difficult and painful.
After three days it also became clear to me that something had happened.
Normally you hear the stories of people who had a brain hemorrhage, that they have problems with their faces.
That, for example, half of their face is paralyzed or that they have difficulty speaking.

My own experience with someone with a brain hemorrhage was with my grandmother.
She had the problem that half of her face was paralyzed.

We also noticed that she was slowly getting worse.
Problems with her memory, for example.
But this also could be because of her age.
She was already in her 80’s when she had the brain hemorrhage.

As soon as I heard that I just had a brain hemorrhage, I immediately was thinking of her.
Then when I got the second brain hemorrhage, I did not know anymore what or how now.
But luckily, I had no symptoms of paralysis.

For me, I notice that when I looked at people, I only saw half of their faces.
The first few times I didn’t pay much attention to it and I just look a bit to the side.
Then I noticed that if I looked at the name of my medication, I didn’t see the whole word in one go.
For example the word Paracetamol, I only saw Par.
Only when I looked further to the right did I slowly see the rest of the letters appear.

At first, this was very strange.
I told this to one of the nurses and she would make a note of it and pass it on.
The more I looked at things or the more I tried to read, the more I noticed that something was wrong.
A day later I heard from a doctor that I had Hemianopia.

Uh, what, I was thinking?
You know, I am in the hospital and so much has happened.
You are still processing things, that you don’t immediately take in such a strange word.
Well, I thought, they will say it again and then I will pay attention.
It took weeks before I found out what it was.

Someone from therapy also came to my bed.
She was responsible for the Visual part.
She wanted to know what I saw and how I saw it.
And whether I saw everything and how I would respond to it.

The first test was a walk through the hospital to see how I would respond to my surroundings and if I could find my way in the hospital.
This went ok.
She also wanted to know, that if I read, how I did this and how I felt doing this.

It is very strange.
I had read a lot.
Books and magazines.
But after the brain hemorrhage, I had picked up a magazine once and put it back after just looking at one page.
It was almost impossible to read.
I had no overview at all.
In a normal magazine, there are also many pictures and you quickly have an overview of what is where and where you want to read.

But for me, I did not have this anymore.
I suddenly didn’t have an appetite for this.

By the way, Hemianopia is the medical term for half field of vision blindness.

My Hemianopia is on the right side of my field of vision.
This is in both eyes.
The “problem” of this is that I don’t see where a word or a page ends.
So I have to read the entire word letter by letter and in my mind, I am puzzling and putting the letters and words back together, to know what word was that I had read.
This is also on a page.

I don’t see where the line or page ends.
Normally, if you read and you think you are at the end, then you go to the next line.
It has happened and still happening, that I started reading the next line and I already thought, this sentence is wrong, I think something is missing.
So back to the previous line and try it again.

And with a bit of luck, it will make sense.
But sometimes it happens that I have to read a sentence three to four times before I can see what I had missed.
In the beginning, it was very often.

I think you know it.
You read a line and as far as you know you have read everything correctly.
However, it is incorrect.
The sentence doesn’t run well.
You can then read it several times and not see it.
Until you leave it for a moment and try again and then suddenly you see other words or letters that you have just missed over and over again.

For me, the fun of reading was over.
A magazine, no thank you.
Now I still don’t read many magazines.
The pages are too crowded and it is tiring.
Yes, it is just reading, but you have to focus too much and it costs a lot of energy.
And therefore it had ruined the fun in reading.

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