CVI РCortical/Cerebral Visual Impairment 

I’m writing this blog after talking to a friend of mine who possibly has this condition, one which I also have but is undiagnosed as a lot of professionals don’t recognise CVI as a VI because the eyes themselves appear normal and it is in fact the brain with this condition That is affected because the eyes will see things but the brain can’t process what the eyes are seeing so the images get lost or stuck somewhere in between eyes and brain. Normally like myself this condition occurs at or shortly after birth due to brain damage or some sort of brain trauma so this type is called Congenital CVI but what I didn’t know same with Cerebral Palsy thanks to the Paralympics that these 2 conditions can also be acquired later in life. It does seem that the focus is mainly on children with CVI and not much on adults which is kind of odd because either we’ve had it since we were children and it won’t go away or if can be acquired and I think it’s those along with children need help and support for this condition but hopefully as more research is being done more professionals will know about this condition and acknowledge it as a VI. 

People often ask as they do with any VI person “what can you see?”. Now it’s not black and white unfortunately as everyone sees differently and because I’ve never seen normally it can be quite hard to explain, thankfully I found some fairly realistic simulation specs online which have helped people to understand a little and it’s quite interesting what different people see with these specs. Most people who have their 2 eyes working together when they put the glasses on they will see double but thankfully most of the time unless I’m tired or ill or trying to focus too hard because my eyes work completely separately to each other I don’t necessarily get the double vision. So I will try and explain as best I can what I can see to hopefully give people a better understanding:

The world around me is like a jigsaw puzzle so when I first go somewhere new my brain needs to process what my eyes are seeing and that can be very hard, tiring and takes a lot of concentration as it tries to figure out what things are and so in my home town or workplace which are familiar areas my brain can fit missing pieces of the puzzle even though I may not see it, obviously there are constantly changes which again throws the brain into confusion like bright lighting including the sun or in the evening which makes everybody and everything look like silhouettes, at night or in darkness I see nothing unless some light is coming through. have no peripharal so it’s mostly in the centre what I see and my eyes don’t work together so one may see something whilst the other will see something completely different, sometimes I see double or one and a half of something. It’s worse if I am tired or ill. I have nystagmus as well and a block squint, one eye is normally worse than the other and in my case it’s my left so I see most out of my right. I can’t see what’s on the floor so only what’s at eye level and when I try and pick things up or reach for something or touch something I sometimes miss it. The brain works in mysterious ways and I cope relatively well as my brain has adapted to my way of seeing it just doesn’t transfer the images the way it should. I have no 3D vision so people look like cardboard cut outs, steps, stairs, kerbs etc are all flat so they are difficult to judge and traffic is hard to judge the speed so I’ve had near misses but thanks to my guide dogs I’ve been saved every time ūüôā facial expressions I can’t distinguish so I go mostly by people’s voices or footsteps. Crowded and unfamiliar places are a nightmare and a challenging undertaking which can make me stressed because there’s too much for my brain to take in so it gets overloaded which in turn gives me headaches because it takes an awful lot of concentration. Sometimes sitting in darkness is actually lovely because I don’t then need to focus on anything or if I’m on my iPad then that’s the only thing I need to focus on because everything else around me is black so my eyes even though they still need to process and read it’s a lot less strain than having to try and process everything Around me when the light is on or I’m outside. Reading isn’t an easy thing because of my nystagmus everything swims on the page and it would take me far too long to read a book because I can’t read more than a few lines before feeling the strain so I listen to audio books now and if I do read I try and have the font size to 36 for instance as that’s comfortable reading but If it’s too big or too small there’s then too much movement for eyes to cope with for instance if the letters are too large I only see a portion of it and it takes much longer to figure out what that letter might be and that’s why magnifiers are not the best for me even though I have found an electronic one that is really helpful. 

High contrast things are best because otherwise things merge into each other and I can’t figure out what it is for instance kerbs, roads and pavements all look the same and are all flat to me so I can’t distinguish what is what because it’s all grey but again when I’m used to an area whether it be pitch black or daylight My brain will remember when there is a kerb etc but even when I’ve been to a familiar place a 100 times one time I will notice one thing and yet I’ve passed it so many times before or I won’t notice something or my brain will think there is something in my path when there isn’t anything. Most of the time we look as if are just fine but it takes a lot of hard work to process the world around us and that creates the eye strain, tiredness etc which the public don’t see and CVI does go hand in hand with other disabilities so it’s not just the eyesight it’s the whole package. 

I’ve attached a video link from YouTube which explains better than I do about CVI. Eyes are not the only thing that help us see the Brain is a major part and if the nerves don’t connect it is kind of as if the images are bouncing back and forth but going nowhere. 

Cameras – How they enhance the world for VI’s¬†

I have always had an interest in cameras and taking photos for my memories and to be able to show friends/family etc. 

I didn’t realise however the impact a camera would actually have until I bought my most recent camera the Sony cybershot HX400V. I had before the HX50 which was also fabulous and enabled me to capture and view some of the most amazing scenery and wild animals in Swaziland because without my cameras the lions blended into the background, I couldn’t see the elephants or the tiny birds sitting on top of the rhinos but with my camera and it’s 30x zoom I could see the amazing animals and birds, the sunset sky, and the beautiful surrounding scenery. 

For my birthday I was given the bridge camera cybershot HX400V and again this has enhanced my world and enables me to see what’s in front of me or what is 100mtrs away with it’s 50x zoom it can capture the moon and all it’s craters and all I see without my camera is a white dot,unfortunately it has yet to capture a Star which is something I have always wanted to see but there’s certain things even a camera has its limitations. The other night I was able to watch the clouds roll over and cover the moon when normally I wouldn’t see that at all. 

When I took my new camera to the zoo I was able to capture amazing close ups of the animals which helped me be able to really see the amazing fur the lemurs, orangutans and tigers had, the amazing head of a lion. To me the camera is like binoculars and binoculars I cannot use because I can never find anything and through the viewfinder of a camera I wouldn’t see anything either so I love the big screen on the camera. 

Cameras are certainly an amazing invention and they are constantly improving and for me it really is a really useful tool to help me enjoy the outdoors, the little birds to see their amazing feathers and to be able to marvel at their beauty is something people take for granted If they can see, to be able to see the moon and it’s craters is truly amazing and constantly when looking back at my photos of Swaziland I notice something different in the picture such as an extra lion which I totally missed when out there or a lizard on a tree. Makes me more amazed every time I take a picture of God’s creation ūüôā 

Moon with a dark cloud like a hairball moving over the bottom 

Pic 2 a view over Jacobs ladder beach with All the different blues of the sea the green grass and the sky And the tower to the left on a sunny afternoon 

Moon in a completely dark sky 

Hlane 

When we moved from Mlilwane to Hlane we had no phone signal and I couldn’t wait to experience it life without electricity just parraffin lamps. A truly remarkable experience, all we could hear in our rondaleves was th sounds of th animals. The pleasant sound of th lions after they’ve caught their prey, the Hippos roaring and the birds tweeting. To wake up to a roar was sometimes quite scary because I sometime forgot I was there but most of the time it was pure bliss! It was funny trying to crawl out of a mosquito net whilst trying not to wake up your room mate lol! I’m told I managed it, I have to say it was a nightmare wrestling with it in the pitch black! If you would have seen me you would have laughed! 

This was true africa, absolutely amazing!!! We finally after our game drives etc in this wonderful location we had to head home. Still now 6 months later certain areas of terrain, certain sounds still remind me of Swaziland. The memories will last a lifetime. 

What is normal? 

I had an interesting conversation with the two reception staff yesterday and a colleague today in the office in regards to me being ‘normal’. 

Yesterday as I was leaving I had a conversation with the reception ladies regarding guide dogs and that they were saying I am normal, they can have normal conversations with me and that they thought that I would be fine and still able to get around without Peter. I explained to them what Peter does for me and that he enables me to be confident when walking around which in turn made them think that I’m as able without him.

A guide dog helps me to be normal, I can be a confident person because I have my guide dog with me who keeps me safe and protects me from any harm that gets in my way! 

Who is normal anyway, we all are unique so we could all think of ourselves as normal or abnormal. My colleague today was mortified when she came back in the office after talking to the lady on reception because my colleague would think of me as nothing but normal and no different from anyone else which is lovely bless her and we had a good giggle about it thank goodness for a sense of humour lol! 

Just because we are different doesn’t mean we aren’t normal. What is your description of normal? Is anyone normal? What is normal? 

Horse riding safari 

This was the day I was most looking forward to! First we put on our gear and went to find the horses. 3 of the more experienced riders went out first for a longer hack whilst we groomed and got our horses ready. I was matched with sighted guide Jo for this which was nice as we are both of similar age and have got a sense of humour so I knew we’d get on very well. Our horse was called Huckleberry and was a beautiful grey/white horse one of my favourites. Such a lovely patient horse having us digging around in his hoof and fiddling with his mane and tail. Once finished we put the saddles on and then swapped horses, I was gutted not to be riding a white horse but when I met Baloo a beautiful dark brown horse I fell in love and I was ok knowing Huckleberry was being ridden by my good friend Sarah. 

Anyway after having photos taken we set out on our horse riding safari. We rode through long grassy areas in the midst of Wildebeest which are beautiful dark brown animals which never look very friendly, Impala, Nyala and Blesbok as well as beautiful zebra. We also rode towards the crocodile pool where I very nearly had a bad accident as Baloo bolted as we went down a slope towards the lake but somehow I managed to hold on tight to Baloo and stop him just before the croc pool, a scary experience but one which hasn’t put me off horses! 

Riding on horseback through the wilderness is something spectacular, you can get closer to animals than you ever can on anything else and it just feels so wonderful. The crocs and Hippos were in the lake lurking somewhere. Crocs are weird creatures like from the dinosaur times with their skeletal skin but it’s amazing they allow little birds to sit on them and ducks to sit nearby without batting an eyelid. Unfortunately a zebra had lost its life thanks to a croc so it’s odd to thing these birds Trust these crocs. 

Pic shows me standing next to white horse smiling at the camera

Pic of the grassy areas with blesbok and Wildebeest 

Pic of the lake with the croc lying on land 

A close up of the croc and the ducks sitting next to him

A close up of a Wildebeest standing in the grass 

Pic shows Jo and Chris on their white horses with the green grass below and mountains behind

Close up of me smiling as I ride a dark brown horse which is Baloo

A group photo of 8 of us Riding the horses back to the stables on a path 

A creative mind creates amazing things! 

Day 4 in Swaziland it rained quite heavily which was a relief for the kingdom. I and several of us others were slightly gutted because we were supposed to do a horse riding safari but it was decided we would do it the following day. So we did the indoor visits today to Gone Rural and Baobak batik. 

People in these countries seem to have very creative minds and use everts little thing to make amazing crafts. Take Grass for instance they dry the grass out and then dye it before making it into placemats, bowls, hearts etc, they had some beautiful things for sale. We then went to Baobak batik to see some fantastic artwork being made. It is the batik prints, the effort that goes into making such beautiful artwork is incredible and takes a lot of patience. They have to draw the picture first, then dye it two or 3 times, they then dip it in wax and then in hot water I think and then hang it to dry and it becomes the most beautiful artwork ever, I had to buy two different patterns and a cushion cover! We then saw the making of candles and the quick work that goes into making them into whatever animal they choose to make. Incredible people with incredible patience and incredible talents. 

There was also an amazing field full of pineapples! 

Pics show the process of the Baobak batik prints being held up by two ladies turning them over at the various stages till the finished product and then it shows several people drawing, painting, moulding candles and making soap. Pic shows a black and white candle elephant and a multicoloured candle elephant. Another pic shows a pineapple on a pineapple plant as it lays on the floor. The finished batik prints of warthogs, elephants and giraffes under a baobab tree and a sunset sky. And lastly me and my sighted guide Sarah standing in front of a shop which is kind of a cute little shed with Yebo art and design on. 

Today

Today 2nd October has been the most amazing day here in Sidmouth, it was a cold start to the day but it soon brightened up and warmed up. It was an extremely low tide so we decided to walk along Jacobs Ladder beach because there would be lots of sand which is far easier to walk on than stones and the dogs can go anywhere on the beach now which is really really nice! It made me feel very fortunate to live here and made me appreciate the beautiful blue sky, the reflection on the sea, the beautiful sand on the seashore, the gentle waves and not a cloud in the sky. 2 paragliders were making the most of the weather. The dogs had a wonderful time playing on the beach dipping their feet in the sea apart from peter going fully in splashing and going mad but he was a good boy and listened when I told him to come even though other people had balls for their dogs so I was very pleased with him it was only when we got to nearly the end of our walk along the beach that Peter decided to go full on crazy racing through the waves with his bottom tucked in and just went absolutely mental, poor Texan got it full force but I managed to rescue Texan, grabbed Peter put him on the lead for him to calm down, when he suddenly goes crazy he is a force to be reckoned with its quite scary lol but he just can’t help himself and it makes me smile but when I got him on the lead he calmed down but obviously didn’t want to leave. We met another guide dog and its owner along the beach who Texan and Pip played with, Peter did for a bit but he became too rough so he went back on his lead. He can be gentle because he was so gentle with Hetta yesterday but he did get too excited and started barking and having a tantrum because he wanted to play with her but knew he couldn’t. So vocal when he tries to tell me something that he doesn’t agree with lol!