MY COATS STORY

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When I was 1,5 years old I got syndrome Coats Disease. This is an eye disease that settles behind the eye. That is my retina is damaged and unusable. What has happened is that the retina is placed in the wrong place and optic nerves have been damaged, so I'm totally blind. This disease is rare that girls get, but hey, here I've got it. What scares me most is that since I have this, it is a small chance that I could be blind in the other eye as well .. I've been told that when I was a few months old, my parents had taken pictures of me and when they noticed something that should not be there. One eye received reflection of the flash, but not the other. How was happening there, and I was sent to eyedoctors and specialists. I had enough several studies, but did know at last that I had this diagnosis.

 

Coats Disease is totally painless and I don't feel any discomfort. It happens that it is especially in the right eye I get a real high pressure and it feels like my eye is on track to roll out. But this is only at special times when the pollen season starts etc. There are only a few in Norway who have this disease. The doctors headed on is why I still have movement nerves and sound. When I look to the left, right, up or down, still follows a blind eye to. Motion nerves tend not to work when this disease affected eye, but I've been very lucky!

 

When I started in kindergarten I do not remember much, but no one knew enough what this eye was. The adults were told so they knew I always had to be on a special page if we were somewhere, so I could see that there were someone on the right side of me. When I started school, I went in the same class with those I went to kindergarten with and that's when the questions started coming. What had happened, was I born with it, how is it and why I have gray/white pupil. The answer was not easy, for I didn't know much about it myself. Teachers were also told what I had, so I remember that I always sat on the right side. In junior high I started with many new students when the municipality was turned in together. It started with a few questions, but I did of course many questions in the 10th grade also for those unable get into what actually happened and how it worked. In 5th class, I got a big suprise of myself. It was scary, but also some good. I began to notice that I had much better feeling on the right side of me. If people were nearby, I was able to know that someone was there. When people were trying to trick me stand fan so I could not see it, so I slammed his arm against them and kept in the arm to the people. I have particularly strong reaction and notice quickly if it goes people on the right side of me.

 

Back to when I meet new people. I do not thrive near people I do not know. This is because of the social and because of the eye. I do not quite like to respond to what's happened since I do not like it well myself. I do not like that people pitied me BECAUSE of this, because I felt like a helpless person. I'm still a normal person and I'll manage just fine. Everything is Normally, except that I only look at one eye.  My big dream is to get to work in a workshop, but it must be taken into account. It must be great space around me, things can not be waved and I must take care not to damage the only vision I have left. Before, I could see twice as good as any other in the eye I look at, but my vision falls down all the time. This is one reason that I have to wear glasses.  And sometimes it can even approach things become unclear. For years I have been much checked by eye doctor and that's because I've struggled with vision, headaches and pressure in the eyes. I felt dizzy all the time, constant headaches and everything was quite foggy. Then it hit me, now I'm going to get the world's saddest feedback. BUT, I was lucky. They thought it was just a virus on the balance nerve, otherwise found not out anything. I still walk with a headache once in a while, but not as often as when.

When I know I'll be photographed, so I rush life of me long before. I must have the my hair straight and try everything I can to not show the eye. I feel simply not comfortable. Photos right above me are absolutely terrible. So the pictures must be taken from the left side. It is now that I've gotten older that eye bothers me more, before I did not care, but now I am going out into the world to start life, so when I can not bear all the hassle. It's fine that people ask what's happened, but some people will have everything so dramatic. I try to explain what is wrong, but then it becomes just disgusting. So it's sort of no way to say it properly. * '' I'm blind '' is the most get answer. As simple as that. It isn't anymore else to say, but that's when the digging starts. '' HAVE YOU A FAKE EYE? '' One of the most normal question I get. I have not a fake eye. I must explain how it is to look at one eye, and it is also not easy. People hold their hand in front of one eye and try to see how it is, but it's nowhere near it. I see nothing. It's just as if the eye is not there. When you put your hand in front of the eye, everything becomes black, right? Not with me. It is not black, it is nothing. It's hard to explain, but it's like that. Nothing.

This was my story about what it's like. It's not easy and it is not comfortable. I strive, but I'll manage fine. I'M JUST LIKE ALL OTHERS, JUST bit more special.