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Nicola McDowell’s Blog (29) The vision gremlins are back

Nicola McDowell sustained a brain injury aged sixteen, and for the following seventeen years was unaware that she had CVI. Through a series of blogs Nicola shares her experiences with us.Nicola McDowell sustained a brain injury aged sixteen, and for the following seventeen years was unaware that she had CVI. Through a series of blogs Nicola shares her experiences with us.

The vision gremlins are back

I have recently completed a fairly major house move from the North Island to the South Island of New Zealand and in the lead up to the move, I anticipated the usual challenges of a major life change. However, what I didn't anticipate was my CVI returning with a vengeance. But before I get into that, let me first just clarify that statement - I have had CVI for the last 25 years. It hasn't ever gone away; I will have it for the rest of my life. BUT in the last few years, I have managed to get to a place where most of the time, I feel as if I don't have CVI, thanks to a deep understanding of my visual difficulties and the range of strategies I have put into place to alleviate these difficulties.

But as soon as I arrived in my new town, the vision gremlins (as I like to refer to them) started gleefully running rampant in my life again. As we were driving from the airport to our new house, I missed a number of major landmarks that I had expected to see. I got very disorientated and every time we jumped in the car to go somewhere, I felt like we were going a completely different way, even though it was the same way each time. On our fifth drive to town, I noticed a street named McDowell Street and commented to my husband about it. He looked at me in surprise and said, 'Is this the first time you have seen it?' Because of course, he had seen it every time! A street name the same as your last name is normally something that pops out at you straight away!

It got worse! I was once again relegated to pushing the shopping trolley and dutifully following my husband around the supermarket, because for the life of me, I couldn't see anything on those damn supermarket shelves. I then walked in circles in the carpark trying to find our car, even though I had been in it when it was parked! I have lost my dog on numerous occasions and panicked that she has run away, most of the time she is just sitting quietly somewhere on my right side and I haven't thought to scan to the right, because for me at the moment, the world doesn't even have a right side. A week after we had arrived, I walked straight past my house and would have kept going if my son hadn't asked me where I was going. Ten days after we arrived, on a walk (the same walk we have done twice a day since arriving), I noticed a new house just across the street from us and my first thought was 'gosh that went up fast'! But of course, it didn't spring up overnight, it had been there the whole time, I just hadn't noticed it before.

Now, some of you reading this, might think that you do this all the time, especially if you are distracted or not paying attention. But the difference is, I am paying attention! I am excited about my new surroundings and want to see everything, explore it all and embed myself in my new home town. But alas, the vision gremlins have other ideas! However, there is one major difference between this vision gremlin attack and the attacks from the past - I am finding myself curious about what is happening and at times entertained by the fact that my vision can be so affected by new surroundings.

Let me put that another way, ever since I first found out that I had a dorsal stream dysfunction and experienced the visual issue of simultanagnosia, I have often found myself doubting the diagnosis. The definition of simultanagnosia is only seeing one thing at a time and I often look around thinking I can see multiple things at one time, I can't possibly have simultanagnosia. But in this new unfamiliar environment, that is exactly what is happening. Every time I leave the house, I am only seeing one interesting thing in the environment at a time. One day a familiar name on a road sign, another day a cool looking house, you see how this is going. But because I am only seeing these things in isolation, I couldn't possibly tell you where they are in relation to each other. If you offered me a million dollars to get you from my new house to my children's school (somewhere I have been taken to multiple times already), for the life of me, without good old Google Maps, I would not be able to get you there.

I am back to only being familiar with the inside of my house (and in reality not even that familiar with that!), something that could be quite disheartening. However, this time, I am not letting it get to me. I am enjoying the challenge of finding my way again, of feeling somewhat lost, of only seeing half the world. Well, I was, apart from the one day after I didn't sleep well, and woke up feeling grumpy with the world. Then it got to me. Then my old friends, anxiety, fear, agitation and impatience rolled easily back into my life. On that day, I was distressed by the fact I couldn't find my landmarks and when I walked in a crowded and cluttered shop, I snapped at my children and then my husband and then fled the shop before the full blown CVI meltdown took hold.

So, what is my lesson in all of this I hear you ask. Well familiarity for someone with CVI is good. In an environment that we know like the back of the hand, it may seem like we don't even have CVI at all. But it's always there. Always lurking in the background, waiting for the time when you lose that familiarity and all of a sudden the world feels like a scary place all over again.

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