I know I put up a post yesterday, but today I saw something that made me think. Please don’t get me wrong, I 1000% understand why people do this. There is a photo going on facebook now that is an effort to show simulation between ,,normal vision” and CVI.
I know it is just to get an idea of how CVI people might see. But this is oh so wrong for me! In my case, and many other CVI’ers, our vision depends on the environment around us and how we are feeling. To see somewhat like this I have to be extremely tired, both physically and mentally. Note that the vision itself never changes but the environment does. In the post I saw there were a bunch of more simulators one for each of the most common eye disorders. I, along with most of other CVI people have a coexisting ocular disorder (in my case optic athrophy).
Here, for example is the simulator for glaucoma. Up to the point that I can explain my vision, I would say, in a day to day environment this is the closest that it gets to how I see. No lower or upper field, and limited to the sides. (See my first post where I explain my vision in more details).
Here below is the simulator for nystagmus, ( abnormally rapid eye movements) I have nystagmus as well, so this is how I often see. For example when on stage, having to concentrate extremely, according to these images, my vision would look like glaucoma + nystagmus, At the same time
Here is the simulator for blindness. You can see that not even blindness means complete darkness! I have to be overly stressed, sick or scared to get vision like this. Also this can be the case when it snows.
Along with the simulators above, I have farsightedness in one eye and nearsightedness in the other. So, my CVI, is a bit like having glaucoma, CVI, nystagmus, near/farsightedness and blindness at the same time !!
So….
Being blind and being blind is not the same thing. Both when it comes to CVI and ocular disorders, but it might vary even more between us when talking about CVI. This is the most important thing to know. Putting up simulators is a good way t0 get an idea but it will never tell you more than that. I have seen these posted with ,, this is exactcly how you see with CVI” but that‘s so wrong. I have to admit it makes me sad to see those statements. But as I said I understand fully why people go by those simulators and why they put them up. I share this blog and these photos proudly because it gives people an idea. What is disheartening is when someone states that this is the only way to see with CVI.
Voices of CVIers need to be heard. I experienced a strange thing today while I was at physio. I had explained my vision to my therapist, to the best of my ability. I stood on a balacning mat, throwing and catching a ball meanwhile. I told my therapist that if she would throw the ball in the middle or upper field, it would be the best for me to see, but in the lower field, no chance of ever seeing the ball. After a few throws the therapist suddenly started lowering the ball down at my knees and ,, jokingly” throwing it in the lowest field. I couldn’t see a thing. In the moment I burst out laughing and then said, Hey, that wasn’t nice!!
Afterwards, I started tearing up, because this is something that happens almost daily. I try to tell folks what is best, but it is ignored. It’s these little things that make me feel unheard and belittled. This might be because there technically is no way to ever explain how CVI people see, as I mention along with the photos. I appreciate greatly when people try to, but we have to remember that everyone is different. The only way we can somewhat know is to listen to the voices and behaviours of CVIers and believe them 100%.
So, as on one of the photos it says :
BLINDNESS IS A SPECTRUM!
Until next time <3
Dagbjört