In this post I will shed light on some comments I have gotten since my diagnosis and try to correct them :) I only want to emphasize the struggles that these comments can cause and what CVI people can go through in society if solid information isn't given from the absolute start.
Some comments that I have heard since this all started for me are -
* ,,You must just be making all this up in your head"
Wrong! Although people have known about the relation between vision and the brain for centuries, they seem to think that this doesn't exist. CVI is something that opthalmologists aren't tought about in their studies ( No joke!). This leads most of the time to a very late diagnosis, like in my case - I was formally diagnosed at 26 years old. Undiagnosed CVI can cause a lot of stress, sadness, fright and confusion, for everyone involved. We use almost all of our brains areas to process vision, so if there is a damage to some or all of these areas one can easily become severely visually impaired or even blind.
*,,CVI is so rare, you can't be many in the world with it"
Wrong! CVI is the leading cause of visual impairment in children nowadays, and the commonest cause of visual impairment in the developed countries. ,,Approximately 30-40% of children with visual impairments have CVI. The National Institutes of Health website cites a CVI prevalence of 10.5% of all children with developmental disabilities". https://pcvis.vision/what-is-cvi/ . I have also heard that about 1 in 30 kids in a normal classroom have CVI. The national institute for the blind here in Iceland says that the biggest group of the kids in the institute have CVI. It's not rare - it's just not diagnosed.
*,,You are doing so well, this can't be that big of a problem for you"
Wrong! There are many concequences from my premature birth and brain damage, such as mild CP, pain, migraines and more. But CVI is the biggest problem. The energy that CVI people have to use to simply look at things, is about 20x more than for non - CVI person. Imagine that for every single thing that you look at daily ( even your watch or a book that you are reading, you would use as much energy as if you were in the gym, doing a bike or lifting something heavy. ;) This, for example in my case can cause severe migraine attacks, if I overuse my vision.
*,,You see so well, you don't need a white cane "
Wrong!! Even though my visual acuity is decent, I have a very severe visual field loss ( see last blog post). Due to my lower visual field being almost non existent, I am unable to see my feet when walking, see stairs when going down and I bump into almost everything and everyone. That's where the white cane comes in. I cannot stress enough how important help the white cane is to me and so many more CVI people. It has saved me multiple times from falling and breaking a bone, from me being in a car accident, from bumping into everyone and feel embarrassed the rest of the day - or longer! ;) I got this comment from my old opthalmologist which didn't believe CVI existed. Not to be misunderstood, man, it was hard to accept that I needed it, but the cane has shown that it's my most important aid for so many things.
*,,You see so well, you will be able to drive a car"
Wrong!! ... Oh, how I want to, but not a chance. According to my visual field test I have 4-5% of vision, so I wouldn't be able to see anything when looking at the street ahead - not even well enough the street lights or the other cars! Again, a comment from that same opthalmologist as before. It would be gravely dangerous for me to even try to drive! So, I use a bus or a taxi ( here we have a taxi for the blind which is cheaper) to get around :)
*,,CVI manifests itself the same way in everyone"
Wrong!! As I stated in the last blog post no two individuals with CVI see the same way. How people see, depends on how severe their damage to the brain is - and where in the brain it is. This is extremely important, as although you might have found a way to help one person with CVI - you have to think again for the next one you'll meet. They most likely will need diffrent approaches to studying and navigating through life.
,,Your vision changes from time to time "
Wrong!! I very often get the comment ,,but you saw this yesterday, why not now?". The answer to that is that it's our daily level of energy that can impact what we see. For example if I am tired, stressed, angry, frustarated, sad, sick, or overexcited I see less than if I'm emotionally stable. That way I can go to an english class and see pretty well - and then an hour later go to a math class and be almost blind - because of being stressed or tired after the other classes of the day.
,,You can read text, so you can easily read numbers or sheet music"
Wrong!! Again - this depends on the severity and location of the brain damage. In my case the damage didn't affect the area where text and letters are seen and processed, but on the other hand it severely affected the areas where numbers and sheet music are processed. This is the reason that despite being in advanced music studies I have to study everything almost exclusively by ear, the reason that you might see me read a book, or send a text message, but not calculate things or read my music without help.
Each of those comments are material for a whole blog post, I might post some later but this post is to stress the - sometimes understandable, other times unappropriate questions or comments I along with so many CVI people will get through our lives. Often these comments can cause sadness, fright or anger - where it's not needed :)
In my case it's more than welcome to ask me about my disabilities and share thoughts about them <3
Dagbjört