The million dollar question. The one question that I get asked all the time.
What do I see?
The answer to this question is very simple.... but oh so complicated. My answer to you would be: I don't know. Or more accurately: I can only answer this up to a certain level because every CVI person sees differently. Not like with cataract or similiar conditions. Those are the same in everyone! But why is CVI different to each one? Because it's a problem of the brain - not the eyes! The way people see depend only on where in the brain the damage is - and how severe it is. Did you know that about half of our brains has to do with vision? In this post I'm going to try to explain to you what I see, with the help of some excellent video clips from professor Gordon Dutton - from the website CVIScotland. I won't put all of them up, only the ones that talk about what and where my problems are. Firstly you need to understand that there are many types of cortical visual impairment ( CVI) One can only have 1 type of CVI but more common is t0 have several types at once, like in my case. The more types an individual has, the more severe is their overall condition. Note that though there are many types present, you can be severely affected by some of them and only mildly by other types.
So, firstly, to understand how I see, it is needed to understand the basics of the visual brain.
Almost all of the brain's areas have something to do with our vision https://cviscotland.org/lessons.php?id=3
Here it's explained by professor Dutton what parts of the brain are the main ones for vision. I encourage you to watch these videos, expecially if you know someone with CVI or work with children and young people in general as your job :) I will now list the types of CVI that I personally have ( as explained by Dutton) and try to describe the experience for you.
I have :
* Lack of visual acuity ( very mild) - here is more in depth clip : https://cviscotland.org/lessons.php?id=20
This is probably the most common form of visual impairment in general - having hard time seeing the details of what you are looking at. For example - when actually looking at a pumpkin - you might think you are seeing an orange! In my case this type of CVI is very mild, so I don't struggle a lot with that.
* Lower visual field impairment ( very severe, lower field of vision almost non - existent) . Here is an explanation :
Imagine when you were a kid and made a little binocular out of toilet paper rolls. Or even just tried to put a roll of toilet paper over your eyes and look through it. You are unable to see down ( can't see your feet when walking, a first step to a stair or a low table on a floor etc.) you bump into everything. In my case I also see very little to the sides and the upper visual field so, it is like looking through a toilet paper rolll . Moreover, if I get tired, stressed, irritated, angry, sad or sick I see less. ( imagine looking through a plastic drinking straw) This is my main struggle, trying not to trip and fall ( I don't always succeed in that, haha) Here the white cane is the most important aid, ever.
*Dyskinetopsia (difficulty to see things that are moving, expecially moving fast, like cars or people walking by). Here is a more in - depth explanation clip https://cviscotland.org/lessons.php?id=42
In my case, this is not very severe but still gives me struggles, expecially when crossing a street, and bumping into people. I mostly have to use my ears to locate a car approaching me.
*Optic ataxia (difficulty guiding my movements after looking at something, for example picking up a cup or glass from a table while looking at it) This is a little complicated but here is a clip explaining it quite well.
This type in my case is very mild. Doesn't occour unless I'm emotionally unstable. Although it might be more severe in other people with CVI.
*Simultanagnostic vision or simultanagnosia ( difficulty/inability to see more than one thing at a time). In my case this is quite severe . Sometimes I can see two or three things at once, but never more. Here it is explained better than I ever could.
If somebody tells me to hand them the ,, black pen" I might take long time to find it - and even not find it at all, while it's still located right infront of me. This makes both me, and the ones around me frustarated a lot of times. Can't I just pick the pen up? The time it takes to find it depends on a lot of factors, for example how I'm feeling, or if the pen is in my actual field of vision.
Do you remember the books ,, Where is Waldo?" It usually takes you a few minutes or more to find Waldo on the pictures, and you get tired after doing it a few times? At the time you were searching for Waldo you had simultanagnostic vision. So, having this type of CVI is a bit like living in a ,,Where is Waldo" - book 24/7 !
*Apraxia of gaze ( Inability to look at something that someone else has asked you to look at )
In my case this is also quite severe type. I remember always getting very sad or irritated when someone said : Look at that! ( the bird, the car, the house , the dog ... whatever). It always takes me much longer time to see what they are pointing out, if I'm ever able to see it. Sometimes we CVI people just reply ,, yes, it's cool" when someone points something out, because we don't want to make the person sad or frustarated! So, this short simple sentance .. ,, Look at the __________" is the worst thing you can say to a CVI person.
*Impaired Recognition of facial expressions.
This, for me, is pretty mild, although it can be a big difficulty. Many with CVI aren't able to recognize faces at all, but here we're talking of seeing someones expressions ( for me, subtle expressions aren't seen- like a wink, a question expression or boredom - while I can see a smile or sadness easily ). This makes it sometimes hard for me to know how people react to what I do or say.
*Topographic agnosia (difficulty or inability to know your way around your environment, even if you've seen it before)
This type of CVI for me, is pretty severe. I have to prepare in advance if I know I'm going somewhere new, and go there many many times before I learn to navigate that place. This process, which takes you maybe a couple of hours or, in complex environments a few days. might take me weeks or even months. Also I have to re - learn environments that I haven't been in for a long time. For example school after summer breaks. This can lead to great deal of stress, fright and sadness - which in turn, make my overall vision worse!
Dyscalculia ( difficulty with recognizing and handling numbers)
Note : This does not only go with CVI this can be caused by other things, the reason for it being listed is that this is extremely common in CVI people. In my case this is a severe one. The only math I can solve comfortably is about to up to 9 year olds ... I am unable to handle algebra at all ( probably because of the visual crowding effect - unable to see when there is much clutter). Maths for me was always a complete nightmare at school. I never can see where to write numbers on a graph paper page, because there are so many of them on the same place. As a little kid I struggled with almost all math due to this, and my teachers were really frustarated about it. I could do well in reading and languages, so I was supposed to do well in everything else. Dyscalculia is probably also one of the reasons that I cannot read sheet music, despite being in andvanced music studies.
And finally :
This clip explains how the way I feel can impact my vision. Why does it reduce if I am sad, overexited, tired, irritated in pain, anxious or sick?
So, in conclusion. This question - What do you see? . This was a lot of information to find and take in, however they are explained in the clips in an everyday language that all can understand. This shows that the damage in my brain affects very big portion of it. If we mix all those 8 types ( range in severity of course) together in one brain ( Mine :D ) you can get a pretty clear idea of how my vision behaves. I strongly encourage you to watch the few little clips on here, as they explain way better than I can do! There are many more little lessons, which I recommend watching also if you are working with someone with CVI. I'm sorry for this super long post, but also I thank you for reading and looking at the clips. that way we can spread awareness of this completely hidden disability!
I will post more blogs here later, but here goes the first one - What do I see?
Hugs
Dagbjört
Thank you from us too Dagbjört. My son is 11 and has CVI. We live in Wales (Britain) and there is no understanding of his condition, so we rely 100% on expert websites and conferences I travel to. What makes your blog so much better and special to parents is that it explains CVI from your own personal perspective of what it feels like, how it impacts your life from the individual's perspective, and the various spectrums involved. This is such precious information. Thank you, Elinor.
This a wonderful post. i have been reading about CVI for 16 years (because my daughter has it) and this is by far the best description I have read EVER. It is also charming and creative writing. Thank you for sharing your experience. It really matters. I shared this with my daughter’s teachers and family members. Thank you.