Hello all! I'm very sorry about the long blog pause on my end..., a lot has been going on.
I thought I would write about a couple things here. They are hard to admit and write about - but I think it's needed. - for current and future CVIers and those who work with them/know them
Know that I'm only able to speak from my perspective here though.
Firstly :
One of the things that I find most embarrassing related to my CVI is the fact that I'm not able to handle big numbers
This is due to dyscalculia - and probably simultanangosia as well. The math that I'm comfortable with is probably at the level of a 3d grader ( I'm 32). So, what this causes for me is that anytime I have to handle numbers or if anyone is speaking about them /using them ..... just whatever number related is happening - I go into an anxiety attack. Now I know that numbers and all things connected with them are a part of life - so I'm not saying don't talk about numbers with me or your kids. What I'm saying is : Try to choose the day or time of day the individual is in best mood/most awake/feeling best. This applies also to reading and solving any kind of tasks.
When I'm tired, stressed, sick, upset.... etc. The simple mention of fx. ,, how much was the chocolate bar that you got yesterday?" Or : How many ounces of butter do you use in the recipe" - can cause us mental and physical pain . I get dizzy, nauseated and achy - plus my self esteem goes crashing down.
I know I don't have to be embarrassed about it, since it's not something I can control. But I can get some strange looks or words said to me when trying to handle numbers, fx. In a store - as well as some inapropriate questions, like ,, why aren't you able to do this, this is children's play". However I'm fine talking about these things whenever I am rested and in a quiet mood. :)
Secondly:
I have been experiencing some ( both intentionally and not intentionally) offensive language, both in person and on the internet.
Now I know most people is not trying to be offensive - but in the world of any kind of disability the most innocent looking phrases can hit hard. For example:
,, Oh, you don't have this CVI symptom - so then there is nothing to worry about"
Would someone say that to a person who for example breaks a bone? ,, Oh you broke your leg, but your hand is fine. No worries about anything" .... Nope.
Try to think back in time to 70 -80 years ago. Where ADHD and autism ( for example) were practically unknown - or something offensive was said about the individual. ,, Oh - these people, they can't study or focus on anything."
This is CVI today.
,, These people are faking their ,,blindness" they can all see"
,,I don't see how these peole are telling any truth"
,, CVI must get better with age"
,,It has to be possible to train this out of these people"
,, They see, so they are blind"
,, Their eyes are fine but the brain isn't able to process "
NO. NO. NO. NO.
NO. NO. NO. NO.
Nobody chooses to lie or fake anything. This is our reality, If it wasn't. - we wouldn't tell you.
No disorder/disability/condition gets better wtih age. Once you have it - you´ll always have it.
You can help - but whatever the condition is - it's never ever ever going away.
We're NOT fine
Well... if it isn't processed by the brain - how can the eyes see it ? The brain works alongside our eyes to create vision. this is the most common misconseption of CVI. Our eyes and our brain work alongside eachother - so, if the brain can't process - it cannot be seen.
These are just the couple things I encourage you to keep in mind! Everyone is trying their best ! People's intentions are mostly good :)
I hear at least one of these sentences every single day or week. It's tiring.
Thank you for reading :) What should I blog about next?
Over and out
Love
Dagbjört