Hello everyone!
So, someone asked a question that I thought I could answer with a blog post. What do I do when my vision shuts down?
Firstly we have to understand why our CVIers vision suddenly shuts down - either partially or completely. Here the visual fatigue comes into the picture. I have already written a post about how visual fatigue affects me - and what it is. See below
So, as I mention in the post, for example when we have to use more than one sense at a time, we might get visually fatigued. For me it happens when there are too many people, too loud noise and too much going on, like in a shopping mall or an airport. I also get visually fatigued when reading sheet music - and if I read text for too long. Therefore, school is always a challenging place for me. Parties, supermarket trips, shopping malls, airports, and other loud, crowded situations are also a no no for me, unless I prepare carefully beforehand. On top of this, I have very severe anxiety, which sometimes makes matters worse, as when I get anxiety attacks my vision shuts off.
So you see, there are a million things that can cause visual fatigue. Even sometimes, when I already know that I am about to do a task where I know that absolutely nothing ( also nearly nothing) is going to help me visually, when doing that task, I have to ,,turn off” my vision unconciously. This doesn’t happen everyday, and I try my best to never do this, but in some cases I absolutely have to. For example when in class processing sheet music and what teacher is saying at the same time, or when on stage singing. The harder the song, the more likely that my vision stops working. As a kid, I think this might have happened in class, ( especially math and sports) - and in break time. ( kids yelling, running, bullying). At the times where this occours, I turn almost completely blind.
But when this happens, what do I do to cope?
Hearing:
This is what I do 99,9% of the time.Rely on my hearing which is very sharp. I rely on my ears all the time, but especially when my vision doesn’t cooperate. ( On stage singing, out and about, when walking around, noticing people, cars, listening for people‘s voices to locate them, ecc. ecc. I might not know you are in the room unless you start speaking. Again, relying on hearing. I use it when in the bus, when the computer voice tells me what the next stop is. ( almost never able to know it by vision). These are just a teeny tiny fraction of the situation where I completely have to rely on my hearing. Having to switch between vision and hearing can be exhausting, although I love my sharp ears, especially while doing music :)
Smell
I rarely rely on my smelling sense. Although it helps me know when something needs to be thrown away, like from my fridge, even though I often cannot see the item that I need to get rid of. ;) I have a sensitive nose though, strong smells, like smoke, sweet perfumes and petrol give me headaches.
Touch
I do use touch as well when my vision shuts down. Let’s say I’m looking for something on the floor, and I get fatigued visually, then I often close my eyes and start using my hands touching around on the floor. Also when getting dressed. If I wear patterned chlothes I never look at them, but dress up by touch, because patterns make my eyes hurt. When my clothes are on me I never see them - and never have to look at them, so I only need to close my eyes while putting them on. I use touch in the few times I put on make up. Can’t rely on vision for that. As well as when I comb my hair, I have to use touch again.
Also, when writing on a computer I have to use touch, cannot look at the keys at the same time as i click on them ( just like right now :) )
Knowing what I know now, I would have liked to learn braille as a child along with visual reading as well, just to have an alternative. But I was diagnosed so late, and I might not have understood why to use braille when I was little. Getting the cane also was pivital for me. ( using touch again), because not only did it save me from getting severely hurt a bunch of times, but also my indipendence has incresed significantly. The cane is a lifesaver, I cannot underline enough how critical it is for every CVI person to use a cane.
There are some times that I don’t know which sense to use, during a task, vision, hearing, smell or touch - and then I might appear distant - not paying attention or not wanting to listen. Nothing could be further from the truth. Also, it might take us a couple of minutes to decide on what to use and to swich to it. During that time we sometimes go ,, inside ourselves, appearing as not interested, not listening. This also happens when we overuse our vision and are too fatigued to keep going, for example after a long day of school or rehearsals, friends, party, etc. etc. Then we might need a break like a nap or a lie down with some calm music to calm us down :) ( see post about visual fatigue - link above).
So my main compensatory skill is hearing, although touch comes into the picture once in a while. It is critical to remember that when we CVI people get tired, the first sense to malfunction or shut out is always the vision.
Thank you so much for reading. Don’t hesitate to comment and share your thoughts!
Dagbjört