I don’t directly remember when the disease began. But at the time I was in first class and wore glasses. At some point I complained about seeing dots with my right eye. After a visit at my doctor’s I was assigned tot he Clinic in Essen with a presumption of having retinoblastoma. When that diagnosis was confirmed, of course that came in as a huge shock for my parents. I can remember my mum crying. I surely did not understand why. Despite, I remember my parents to be emotionally calm towards me. I believe that their calm attitude made me feel safe and took my fears. I admire my parents for doing so, I wouldn’t know if I personally would be able to act the same.
I don’t remember the time in the Clinic. There are just a few bits and pieces I do remember. For example, when I came back for a study this October, I remembered the waiting area. I also don’t remember the operation itself, the treatments, doctors and nurses – but I know that my mum stayed with me and that my dad came to visit me in the evenings. And also, I don’t remember the woman that was with us in the hospital room.
I can, however, remember the manufacture of my first glass eye. Ever since, I’ve been to Leipholt in Essen and I still know that I was allowed to watch how the eye was manufactured. That really fascinated me. I also learned there how to take the eye in and out and how to clean it. My parents let me handle the eye on my own right from the start.
Of course, I was missing lessons in schools for quite some time. In hindsight I have to say that my teacher handled the situation fairly well. The whole class was told that I had been sick, that I have now come back and everyone was happy that I was well off again. But I don’t think that all the details (cancer, eye removal, glass eye) were told. Close friends did know that I had a glass eye, but it was never a big issue. I also can’t remember anyone bullying me, neither in primary school nor later. I didn’t feel more restricted than others. I think that’s also because my parents never wrapped me up in cotton wool, even though in hindsight I would understand if they had done so.
In puberty, however, there’s a lot of focus on one’s appearance and also something that girls want to define themselves over. That’s when being cross-eyed did make me feeling insecure from time to time. And also, one starts to wonder why it must have happened to oneself, how the future looks, if it’s possible to have a driver’s license and so on. But I was lucky to have a wonderful family who tought me what really determines value in people, that there are a lot of things t be thankful for and that self-pity doesn’t lead to anything. Apart from that I have always had good friends in school and in my church community who accepted me the way I was. This way I was able to develop into a self-confident woman.
There’s one song that summarizes this thought of uniqueness pretty well:
Never forget: That you are living, wasn’t your own idea
And that you’re breathing, not your decision.
Never forget: Noone things or feels or acts the way you do,
and noone smiles just like you do,
Never forget: Noone sees the sky the way you do,
and noone ever knew what you do know now.
Never forget: Noone in the world has a face like yours…. The eyes – only you.
Never forget: You are rich, no matter if with or without money,
because you can live! Noone lives the way you do.
You’re wanted, not a child of coincedence, a whim of nature,
it doesn’t matter if you sing your song of life in minor or major.
You’re a thought of God, and a brilliant thought indeed!
That’s you, that’s the Clou.
After school I studied to become a teacher for primary school. My subjects were maths, sports and german. I now work as a teacher and it’s lots of fun to stand in front of the class. I don’t get the impression that my handicap somehow has a negative impact on my work. Of course I know that my eye contact isn’t as straightfoward as in others and that that could lead to confusion. So I am trying to contact the children as directly as possible. But in fact, everyone does it like that, so really the only exception would be teaching in some other teachers‘ class and not knowing the students.
I generally try to act as normal and natural with my students as possible. However, I don’t introduce myself as: Hi, I’m Mrs Thöne and I wear a glasseye, but instead I decide pretty spontaneously when and how it’s good to talk about it. Most oft he students accept me the way I am and their judgment teacher-wise really is dependent on the teacher’s personality and his lessons. I treat my students with respect and I expect the same the other way around. When there are disputes, we talk about it.
At this point there even is a child at school, who has a glasseye too, however, not due to a retinoblastoma. Tot hat child I do of course have a different/ pretty personal contact and also fort he mum I have been a contact person. A special highlight meant handing over „Elli“ tot hem.
In work life just like in my private life I feel pretty normal and not restricted in any way. Often, I don’t even think about not being able to see on one eye.
In a few situations I do however realise that my spacial vision is hindered or realise my restricted field of view.
I drive the car, also fast sometimes and longer routes – but find the combination of rain and darkness especially exhausting… but many others find this too.
I don’t especially like pouring wine in, because that’s when I realise that my spacial vision is missing… however, when leaning the bottle of wine on the glass that works too.
I play volleyball in a mixed team. And in a played in / brought in team everyone knows each others‘strengths and weaknesses. For example, I alter the position I had learned in college a bit so I can enlarge my visual field.
In skiing I see the bumps not as clear when it’s dark, so then I’m skiing more insecure.
01.03.2014 | Leading Spirits