Hi, everyone!
I'm sitting here on a friday evening with my head spinning milion times a minute - so I thought I'd write that crazy stuff down ;) This post is related to our next Facebook - live session : Emotional impact on diagnosis of CVI. I have blogged about the struggles i faced leading up to a diagnosis - but what about after?
Yesterday I was watching a fabulous icelandic documentary about women on the autism spectrum. When I was little, my doctors diagnosed me with an autism spectrum disorder. Of course it wasn't out of thin air that they did so, but they followed the clues of sensitivity to a loud noise, obsessive behaviours, anxiety attacks and more. Naturally I related a great deal with the stories in the film. But it wasn't until the end of it that I seriously got moved. There was this girl that went for a test to see if she was on the spectrum or not. When she was told that she was indeed and started tearing up - eventually crying - that's when I realized why I was more moved by these scenes than others.
This is exactcly how I felt when getting diagnosed with CVI. When I heard that I had it and was legally blind ( Yes, even though I suspected it all along.), for me first reaction was like getting a glass with cold water thrown at your face. Then - came the immense relief . I wasn't crazy. I wasn't' stupid. My brain had a named condition. It actually was known. ( boy, was I wrong!!!)
Next came this sadness .. Another ,,label" - legally blind, white cane, magnifires and all ( at this point I didn't know how helpful the cane would turn out to be). Most of all, was sadness for my family, expecially my parents, to never have known, and the little me - How would I have lived differently had we known about this? Would I have had the cane right when starting to walk? Would I've been tought braille along with printed letters? Would math homework have been any easier? How, if anyway would I have been aware of myself differently? So on and so on.
Here I started to try to come to terms with this new thing. I'd be lying If I said it wasn't extremely hard ( and still is). Now, three years later, I am still figuring out new things about this condition and realizing more and more how I ( don't) see. For example the other day I stood infront of my refrigerator getting food. Suddenly realized I couldnt see the refrigerator without bending low. I can not see my feet when I walk. ( Always looked down as a kid) Turns out that anything below my nose is invisible to me. Also one day I sat beside my brother in his car - looking straight ahead out of the window - then realized i couldn't see him. So I can't either see much on the sides . If I knew how it is to have typical vision, i would probably guess that mine was close to something like this:
So what did I do ? Firstly I started informing my friends and family. They have been an enormous support and I'm always greatful for them. Next step was informing my school and educators. I never had a teacher for the visually impaired, although I had a wonderful special ed teacher. When I got to advanced levels in singing my school ( teachers, dean and everyone) took this very well and I sense that they are really trying to help me. What is discriminatory is the group that gives the grades. So as a musician I'm not ( and never will be ) able to read notes properly. I took a test last spring wich i almost passed. ( 57/60). I have sent the grade- givers a letter where a specialist in CVI writes that I will never ever gain more sight and therefore never will be able to read notes like the others do. Nevertheless, these group people didn't listen and failed me. I had to retake all the year plus the test. My exam is coming up in a few weeks and im terrified. Litterally. I don't look it, cause I try to set up a mask :) When asked about the upcoming test I tell these people that I feel stressed and overwhelmed and therefore my mind tends to block my knowledge of notes out. They ask why? I would think it's quite obvious that when you work with something that you can't see, you might get anxious eh?
However I want to emphasize that these people are not my teachers.
The individuals I'm talking about are another group of people who grade all the music schools in the country, without knowing anything about the students. I have though sent theim a lot of stuff about CVI to educate them . They just don't get it.
I have the best teachers ever. My vocal coach is without a doubt one of the lovliest persons on this earth and is a great and true friend. Could write a book about that but not now. She's truly amazing.
This thing with the exams has caused me an unbelievable amount of anxiety, stress and sorrow. I started learning music when I was ten years of age and it has been a constant struggle ever since. I sometimes get the question ,, why are you still doing this if this is such a struggle for you?" . My answer to that is .... ,..because if I quit, they win". I REFUSE to let some people out in town stop me from going after my passion.
Why do I talk about this? It has a great deal to do with the emotional impact on me having CVI.
If you ask me, I would say I wish I had known way sooner. However it's a great relief to know by now. Our battle for more understanding is eternal and when I got the diagnosis I decided that I would do the same as my mom did for me. Fight like a lion until this is as known as being autistic, with ADHD, in a wheelchair, with ocular blindness or other disorders.That is also why me and my awesome author friend Sthephanie Duesing are doing a live stream on this topic, sunday May 3d <3 Tune in with us and help fight the misunderstanding!!
Kudos to you for reading all this babbling <3
Dagbjört