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  • Writer's picturedagbjort91

My story & how I got diagnosed - positives and negatives

Hello folks! This post is going to be both easy and hard to write as I'll talk about my story- both the good, bad, and the ugly - not in the microdetails of course :) So, some of you might not know me or how I got involved with CVI in the first place, so let's start from the very beginning.

I was born in September of 1991 as a premature child - seven weeks before due date. Nobody expected it of course, so my dad called the ambulance to take my mom to the hospital. At that time we lived in the country so it was quite a long way into the city where the hospital is located. A big factor in why I ended up with my brain damage is probably the fact that the ambulance drivers didn't find our house when getting my mom. Finally when they found them they drove for a few minutes and the car broke down. So, again, we waited for the second ambulance to arrive. In the end my mom was brought in and they preformed an emergency c - section. At six months old I had a lot of infantile seizures wich caused even more damage. These seizures recurfaced when I was 16, and I still have to take medicine to stop them.

So, when I was a child, I was tested for all kinds of stuff, even diagnosed on the autism spectrum, and , by opthamologist, with optic athrophy. So, in a sense we always knew I had some sort of visual problems. My brain damage also caused a lack of movement in my body, mainly in my left side. This causes me to walk with a slight limp, have a hard time using my left hand to do things, and to control my left leg. Sometimes if its cold outside or if im tired or stressed i get a lot of pain in my left side. But the main thing here is of course my vision - or lack there of, so to say ;) As a kid I always was a clumsy one, tripped and fell, bumped into things, couldn't run or play like the other children, so and so on. I was good at reading, wich by now I don't really understand, given what I know now, but I guess it was out of interest- my whole family loved reading and telling stories. But, caused by my dyscalculia ( similar to dyslexia, but with numbers), I had a big struggle in math and related subject - still do, to this day. But as my clumsyness was blamed by my lack of motor skills, nobody could explain why I often leaned close to my studying material, hated loud noises, like washing machines, hand dryers, fireworks etc. , was scared of going to the mall or the grocery store, or other big place. Why would I, since the doctors always said i had 80% vision?

I will always be forever grateful for my lovely parents and family wich supported me as they possibly could. My mom was a teacher and worked with all kinds of people. She and my dad always had a feeling I was visually impaired, and mentioned it more than once to all my teachers and doctors. What did most of them do? Deny. No, I wasn't legally blind - I was slow, unenthusiastic, lazy, cognitively impaired, even stupid. I was put in the middle of everything in sports class, even though I couldn't see the ball, or run properly. I was fully functioning individuals with no problems worth looking into. Nobody wanted to check out why I was always so mentally tired after school. Even my mom was blamed, why wasn't I studying harder at home? I handed in all homework on time though. School was also a struggle for me because of very bad bullying. Of course I had a couple of teachers that were awesome and supported me, but I had very few friends. I was bullied almost every single day. Because I was different. But what was the reason?


After going through elementary, high school, collage and university as a ,, fully functioning individual with full vision, one day my mom came home from work and told me that she had a hunch about what was the problem. I wasn't very exited at first, didn't expect this to turn my life around in such a way. She told me that she had to go to a meeting at her work because there was this child entering her program that had been diagnosed with CVI. Somebody had descibed the symptoms to her and as she said herself she got a ,,lightbulb moment". She described this to me and I thought this was amazing cause all the symptoms she mentioned I could relate with. So, we googled and googled everything we could think of and then went to see my opthamologist. I can never forget the conversation between him and me and my mom.


Mom: Could she have this, is there a possibility?

Doctor: Yes, she has it. I've known it since she was a little baby.

Me: But, why didn't you tell us? why wasn't I diagnosed earlier then?

Doctor: Well, I just don't think this is that much of a deal, - and I didn't want to stress you out too much. Infact when you booked an appointment I thought you were here to get your visual permission to drive! (By this point i am 24 years old.).

I looked into all websites I could find about this, and got in touch with a facebook group in which there were parents of children with CVI. I got tons of messages and emails where they asked me to describe my life with this condition. I tried as best I could to do so and reassure them that their kids could indeed do great things. There one of the moms sent me a message asking if I knew dr Roman Lantzy. I, of course said no, living in Iceland, how could I? She sent me her email soon after and i thought, well, cool, dunno though if I'll ever use it. Then, a few months later the same mom messaged me again saying that dr Roman was coming to Iceland on a holiday. I thought this couldn't be a coincidence so I messaged her asking if she would like to meet me, I thought I had CVI but wasn't sure. ( Still not believing). She was happy to do so - so we met in town and she asked me about my life regarding the visual stuff and my history. I explained what I knew - so I guess you could say that she was the one who persuaded me that I was visually impaired! haha. She also asked something about my life, what I had done - so I explained doing all schoolyears as an individual with full vision, including super hard music classes, wich I still study to this day. I told her about my concerts and my music trips abroad as well. She got touched so she invited me to come to the states in 2018 to talk in a conference about my experience. I will always be grateful for her friendship as well as everyone i've met since. I gained a lot of love and friendship on that conference.

Soon after this, I reached out to our institute for the blind and visually impaired, and they agreed to take a look at me. I got my new friend, the white cane, which has completely changed my way through life. While this was all happening, my mom got sick and unfortunately lost her battle, almost two years ago. I miss her very much. Soon after she passed I went for a visual field test . Again, I never forget what the tester asked me. ,, When you're out and about walking, - can you see your feet?" I answered, gobsmacked - Well, no, - is that normal?

After that test the result show that I have 4-5 % vision. So, as I was waiting in this room at the institute to get the results, a woman walks in and says ,, you are legally blind". In a sense I had expected this, but still had a hard time believing it. Still - now everything made sense!

So. I wasn't on the autism spectrum

I wasn't stupid

I wasn't lazy

I wasn't slow

I studied just as hard as anyone

I wasn't cognitively impaired

I had CVI.


I am greatful for my life and this experience. I met a lot of discrimination, bullying and misunderstanding along the way, but if I didn't have all this - I wouldn't be me. I surely wish I hadn't lost so many family members, but I am always greatful for the ones I have, as well as my lovely friends. They're the ones that get me through all this. I thrive on them, as well as my secret weapon, my singing. I am me and I'm ( almost always) proud of it!


Thank you for reading this super long blog! Hugs <3


Over and out


Dagbjört

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