Hi all! Sorry for this super long time not blogging, things have been a little hectic around here. I thought I would explain two important things people have been asking me about in this blog. They are things that are vital to know when helping a CVI person.
Firstly. When you think of blindness or visual impairment, you automatically think to make things larger right? Use a magnifier for reading - magnifying glass for some other things?
Well, thinking like this is normal. BUT, when dealing with CVI this might not be the right thing to do. Why?
Because enlarging things, means that there is more of that thing to visually process. The bigger the enlarged thing is - a letter, number, word, picture etc etc. the harder it is to see due to the ,,quantity" of it. Now, ofcourse I can only speak according to myself and how my CVI manifests itself, other people might need enlargement due to low visual acuity. What I mean is, making things bigger rarely works for a CVI individual. If you are in doubt, of course try that method first, but please don't expect it to work at all.
I remember when I first got diagnosed, not knowing what I know these days, I thought, Well, let's just try to make my sheet music bigger with a magnifier - that should do the trick." The teachers were all very happy and hopeful for me when I got the magnifying device. As for me, I finally got that little spark of hope to be finally able to do my studies without much of a problem. Little did I know, when I was handed back the first test I did with the device. Not a single improvement. But, I didn't give up just yet, and still did several assignments with the magnifier. After all those tests and assignments, with no improvement at all, I remember nothing but the huge humiliation, the overwhelming sadness, and how puzzled I was as to why it wasn't helping.
The teachers from the beginning found it difficult to believe my diagnosis, but after this. some of them started thinking I didn't do my homework, that I was lazy, stupid or trying to trick them. I do well in the actual singing part of the studies, so why not in the written lectures too?
After this, I stopped trying to make my sheets larger. I kinda have stopped trying to get any improvement in locating a note on the staff, which is the most important thing, but I CAN read the other information, although I do it extremely slowly. I still haven't found any method, device, app or whatever to make me able to read the notes but, as I have always done, use my ear to learn all the songs and the roles that I act. I refuse to let this stop me in being a singer. Instead of enlarging, I, along with using my hearing 100% I often have to color code my part of whatever it is I'm studying. It does help a tiny bit, but not nearly enough.
However the cost of all this is that I often feel physically sick after a lesson or a practice. Headaches, vision disturbances, dizziness, nausea and brain fog are things that almost always happen. The day after a hard lesson or practice I usually have to keep free, so I can sleep and rest, to get energy back for the next session. Although I wouldn't trade this to anything else, as music is what I love to do the most.
Secondly. Here in Iceland, these days, back since before christmas there has been a heavy amount of snow and ice. When having CVI, snow is the worst thing weatherwise that can happen. Why?
Well, as snow is of course beautiful, clean white force of nature, it blinds me. The environment gets way too bright, even though I have colored glasses on. This also increases the frequency of migraine attacks and vision disturbances. The landmarks that I use to get around ( which is hard enough in summer, for someone with CVI), change, as snow builds up on them. It makes them unusable.
Due to my other disability, Cerebral Palsy, my left hand and leg/foot get spasms and don't always do what I want them to do. With CVI and snow, this gets a bigger problem, since I can't really see where to put my feet, not to fall and get hurt. Especially when it's slippery and piles of snow everywhere like it is now. Our city seems to not include the ones with (dis)abilities when they are shoveling snow. These past few weeks I haven't been able to use the bus, as I otherwise always do. Because the pavements to and from the bus stops are either full of snow piles or extremely slippery ice. This means that if we didn't have taxi service for the blind here, I wouldn't be able to get out of my apartment. The taxi services are discounted, but, still money.
As to what helps, I always wear ice tracks under my shoes right now. The white cane is of limited help as it will just slide from me due to the slipperiness. Colored glasses do help, but not enough. So, if I don't have school or any mandatory stuff going on, i just stay home, unless I can get a lift ;) .
Snow makes visual fatigue also intensify for someone with CVI. So, if you're having snow around, it might help to keep that in mind :)
Thank you all for reading this Again, I'm sorry for not blogging for so long. Now I aim to start doing it more again.
Hugs - over and out
Dagbjört
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