One of our regular bloggers, Nicola McDowell, has moved house. That, in its own right would not normally be a reason to send out a newsletter, but her new blog about this particular house-move started a little chain of events that we think is both relevant and fascinating for our CVI community (all page links at the end of this page).
Nicola, like so many with CVI, relies very heavily upon remembered mental maps, or mind-maps of where things are, and memories of what things look like, what people look like and how to get to places.
We all do this a bit. Have you ever experienced the frustration when a regular grocery store moves things about, meaning you can’t easily find what we are looking for? Your memory of where things were, from repeated experiences, builds up and forms your mind-map of the grocery store. When shopping for groceries, you use that mind-map in tandem with your vision. This way there is ease and efficiency in finding the food items you want. Move things about in the grocery store, and your mind-map is no longer of help, in fact it might make finding what you are looking for a bit more difficult because of the confusion between what is remembered and what is actually seen.
For Nicola, who has moved to a whole new area in New Zealand’s South Island, it’s like the slate containing her mind-maps has been wiped clean and she needs to start again. Nicola explains how she can no longer find her way around, and can’t at present correctly assemble in her mind the single things she does see.
Think about what you can see around you right now, and look at one thing. That one thing you are looking at becomes the centre of your vision in your mind. Now look at another thing somewhere else around you - that other thing is now in the centre of your vision in your mind. How do those two items make sense? Because you usually have the benefit of being able to handle the visual context of what and where they are in your visual field...unless you have the type of CVI with simultanagnostic vision. This is because we can simultaneously see and identify lots of things in a single glance. For those with the type of CVI where a glance may capture only a small number of items at once, it is a lot more difficult.
Nicola sees one thing at a time, and has to work out how each element fits into the overall picture. So when she sees another thing, she has to mentally work at putting them together.
When she is moving around, seeing things and putting them together mentally is even more difficult.
But Nicola understands her visual impairment, and rather than becoming frightened and stressed, she is embracing the difficulties as a challenge, knowing exactly what she has to do.
Very few people with CVI are lucky enough to have Nicola’s insights into their condition.
Gordon Dutton has written a complementary blog, explaining how common the challenges of change were, and why they arose, and Gordon explains, how profoundly difficult change is for children with CVI, and outlines what we can do to ensure changes are well managed and supported.
Thinking about the prevalence of CVI in the adult population, for example in people with dementia, Gordon Dutton reflected:
”So now we have an explanation for why children with CVI have great difficulty going to new places, as do the elderly whose vision is affected by dementia”.
Then, our new blogger Dragonfly, an adult who has lived with CVI their entire life but was only diagnosed a few years ago, wrote an additional truly inspiring complementary blog.
Dragonfly figured out as a child that the combination of never giving up and conquering fears was going to be an essential strategy for an independent life. Dragonfly explains their journey, from a child, like Nicola, being extremely anxious when it came to change, to an independent adult with a full life and a fulfilling career.
We learn so much when people share their experiences.
Life, one thing at a time, as is the necessity for many with CVI, means that mind-maps need to be built, and this can take time. If a child is stressed, this will take much longer. If a child has communication difficulties, including being non-verbal, then ways to ensure they always feel secure need to be incorporated. Change needs to be very carefully planned and managed.
We have many resources on the website about managing change. In addition to the blogs we have included a few links below, in case of interest.
We hope you are well,
The CVI Scotland Team
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At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.