“I can’t really remember the beginning of my illness.
I was in first grade at the time and wore glasses.
At some point, I complained that I could see spots in my right eye.
After a visit to the ophthalmologist, I was referred to the University Hospital in Essen with the suspicion of retinoblastoma.

The confirmation of the suspicion was of course a big shock for my parents.
I remember my mother crying.
Of course, I didn’t know why at the time.
Despite everything, I remember my parents being emotionally composed towards me.
As I said, I can still hear the crying today, but I can’t remember any other situations.
I think their stable behavior gave me security and took away my fears.
I admire my parents for that, I don’t know if I could do it myself.

I can’t really remember my time in the clinic.
There are only a few “scraps”.
When I was there for the study in October, I recognized the waiting area.
I can’t really remember the surgery, treatments, doctors or nurses and so on – except that my mother stayed with me and my father came to visit in the evening.
I can also vaguely remember the woman who was in the room with us.

However, I can still remember the making of my first glass eye quite well.
I am still at the Leipholt practice in Essen today and I remember that I was allowed to watch the eye being made the whole time.
That really fascinated me.
They also explained to me how it was inserted and cleaned.
My parents let me do the removal and reinsertion myself right from the start.

Of course, I was absent from school for quite a while.
Looking back, I have to say that my class teacher at the time handled it very well.
It was discussed with the whole class that I had been very ill, was now back and that everyone was happy that I was well again.
But I don’t think it was about the details (cancer, eye removal, glass eye, etc.).
Close friends already knew that I had a glass eye, but it was never a big issue.
I can’t remember any teasing or exclusion during my primary school years, nor later.
I also felt more restricted than others.
That’s probably because my parents didn’t wrap me up in absorbent cotton, although I could have understood that in hindsight.

Of course, puberty was a time when a lot of emphasis was placed on looks and girls wanted to define themselves by them.
The squinting sometimes made me a bit stressed and insecure.
You also ask yourself why something like this had to happen to you, what your future looks like, whether you can get your driver’s license, etc. But I have to say I have a wonderful family who taught me what makes a person truly valuable, that there are many things we can be grateful for and that self-pity leads to nothing.
There were also always good friends at school and in the church community who accepted me for who I am.
This has enabled me to develop a healthy self-confidence over time.
I think one song sums up this idea of uniqueness very nicely.
It’s by Jürgen Werth:

You are you
Never forget: the fact that you live was not your own idea,
and the fact that you breathe was not your decision.
Never forget: the fact that you are alive was someone else’s idea,
and the fact that you are breathing was his gift to you.
Never forget: nobody thinks, feels and acts like you,
and nobody smiles like you do.
Never forget: no one sees the sky quite like you do,
and no one has ever known what you know.
Never forget: no one else in this world has your face, and only you have eyes like yours.
Never forget it: you are rich, whether with or without money;
because you can live!
Nobody lives like you.
You are wanted, not a child of chance, not a whim of nature,
no matter whether you sing your life song in a minor or major key.
You are a thought of God, a brilliant one at that!
You are you,
that’s the highlight,
yes, you are you!

After school, I studied to become an elementary school teacher.
My subjects were math, sport and German.
Today I work in this profession and I have to say that I really enjoy being in front of the class.
I don’t have the impression that my disability has any negative impact on my work.
Of course, I know that my eye contact is not clear and that can sometimes lead to irritation.
That’s why I make sure that I address them as personally as possible.
However, you actually do that anyway, it’s only in substitute classes that you don’t know or new classes that it can happen.

I generally try to deal with my students in a normal and open way.
However, I don’t introduce myself like this: Hello, I’m Ms. Thöne I have a glass eye, but instead decide on a situational basis if and when it’s good to talk about it.
Most primary school pupils simply accept you for who you are and their assessment of a teacher is related to the teacher’s personality and their teaching.
I treat the students with respect and expect the same from them.
If there are differences, then we talk about them.

At the moment we even have a child at school who also has a glass eye, but not due to retinoblastoma.
Of course, I have a very different/special connection to such a child and I have also been a contact person for the mother from time to time.
The handover of “Elli” was a particular highlight…

Both professionally and privately, I have to say that I actually feel quite normal and not restricted in any way.
And I often don’t even think about the fact that I can’t see out of my right eye.

In a few situations I notice that my spatial vision is lacking/ or it is not quite as pronounced or I notice that my field of vision is more restricted.

I drive a car, even fast and longer distances – but I find the combination of wet conditions and darkness exhausting… but so do other drivers.

I don’t like pouring wine into wine glasses because I realize that I lack spatial vision… but if you place the bottle briefly on the edge of the glass, it works too.

I regularly play volleyball in a hobby mixed team.
In a well-coordinated team, everyone knows each other’s strengths and weaknesses.
For example, I don’t stand in the textbook position I learned in my sports studies, but slightly offset to compensate for the “blind spot”.

When I’m skiing, I can’t see the bumps as well when it’s overcast and then I’m less confident.
It has to be said that I can get down everywhere, but technically I’m not the best or most experienced skier.
Nevertheless, I enjoy every winter vacation.

I’m not one hundred percent sure-footed in the mountains and I’m not so good at estimating rock steps when descending… That’s why I like to use poles when going downhill, it gives me confidence… it’s also easy on my knee joints.

At training courses, lectures, talks, church services, larger table fellowships,… I like to sit on the far right.
That way I have everything important in view.

When I go for a walk, I prefer to walk on my right side.
In a crowd, I like to have someone I know on my left…

I could perhaps go on, but I hope I was able to convey through “my story” that the diagnosis of retinal blastoma does not automatically make my quality of life worse.
Maybe it will even encourage other people affected!

Katrin
Encourager