Our CVI Family at the Seaside!

CVI stands for Cerebral Visual Impairment and it is the closest diagnosis we can find to the experience of ambient colour sensitivity that my son and I have.

To avoid brightness, UV and business, we decided to leave for the seaside at 8:00 am and as the sea is quite close to us, by 8:45 we found ourselves walking down the seafront of the popular Dorset town of Lyme Regis.

Previously I had carefully packed 3 rucksacks with cameras, binoculars, snacks and drinks and chosen the right colour coat for myself to wear on that day. Also I had to choose some combination of hat and brim to keep out the brightness and UV. My son was in his usual grey, and I was in my usual white bamboo trousers plus pink coat and the hat of the day which happened to be purple. My husband was in his usual blue shorts and white t-shirt. He would wear colour and pattern if we could only manage it.

We have 3 seats in the front of our car (an old Honda FRV) and my son sat with his phone and headphones listening to his techno music to block out the sound of the engine and the wheels on the road. I sat trying on tinted glasses to find the optimum pair for that day and my husband concentrated on driving!

When we reached Lyme Regis we went to our usual carpark and parked under our shady tree. We got out of the car and my son asked for his No.3 tints and I put a sunhat on his head. He went straight to find his camera (a big old DSLR one.) He put the strap over his head and straight away was taking a picture of two seagulls on a roof near to where we had parked. It was the sort of picture most people would miss, not thinking it was exciting enough. But not Luca. He finds the pictures others don’t see.

We paid for the carpark and then walked down the steep hill into Lyme town. I was commenting on how pleased I was with my new pink ski jacket. Yes, it was about 17 degrees and I was wearing a ski jacket! Temperature is not something I process easily. We walked down to the front and on a big wall from where we could see the whole beach laid out before us, I started to unpack my glasses! I had some prescription glasses, some purple glasses with prescription, and three different sets of polarising glasses. I was desperately looking for polarising glasses with the correct tint because I had realised that I couldn’t look at the colour or the movement of the sea. My son was becoming impatient wanting to move on but I knew I had to either find the right glasses or filter out the sea somehow. Having come to the seaside, that thought was depressing so I dug deeper into my bag. And I found a pair of pinkish purple polarising glasses. I put them on and Ahhhh, I could breathe! Everything just went calm and I looked at the sea and it had transformed from ugly and angry to beautiful and tranquil . Now I stood a chance of enjoying the rest of our trip.

Next I knew I mustn’t lose control of things when it comes to Luca. He has limited energy when we are out and if we walk too far, he might not have the energy to get home. We walked along the seafront and there were more seagull pictures to take. And Luca has a particularly clever way of tracking them and and keeping them in focus as they move across the sky. Everyone was happy . .

My husband has a way of being drawn towards the Cob that juts out into the sea, like a bee to a honey pot. But this always means a longer walk and always means going through the business and clutter to get there. Suddenly there is sand and cafes and lots of people, meaning lots of clutter, noise and smells. And yes, once again we found ourselves drawn towards the Cob. And once more I wasn’t happy! I started walking faster which is always code for ‘I want to get out of here quickly!’ so we found a quiet side street and I immediately felt that I could breathe again. And there on a wall nestled between the rooves was a seagull’s nest with a parent looking after their young, so my son was happy now too!

So what was next? Hunger, of course. I suddenly realised I needed a snack so we headed down to the pebbles as my son doesn’t like the sand and, as I said, the beach was too busy. We spread out our picnic blanket and I got out my sandwich. My husband got out his little pack of Nairn’s chocolate oat biscuits. Then my son said “You can’t eat those!” He doesn’t like the smell of chocolate or strawberry jam. I looked around and you could see beach for a good quarter of a mile in both directions! “Can’t Luca move from the smell?” I wondered. I broached the subject but he said he was tired and he had nothing to sit on. And also that he wouldn’t eat his sandwich on the beach because last time he was harassed by a seagull! So our snack became a quick bite and then we needed to find shade away from the beach. By now moods were lowering and I was feeling disappointed. Why hadn’t I thought to bring 2 picnic blankets?

By the time we had walked to the top of the park that backs onto the beach and found some shade, the day was getting hot and the UV levels were getting higher. I was starting to feel the affects of the light spectrum in my nervous system, especially my hands and arms. Now I just wanted to get home. We had been out too long. We had walked a little too far. We had got a little too hot and there was a little too much visual clutter. We quickly found our escape route from Lyme – a pretty alley-way between cottages that leads nearly back to the carpark. On the way, I managed to share my disappointment and receive some solace from my trusty team. At the end of the alley-way, there was just one more hill to climb – the steep one we had so happily come down on our way into the town. This was one too many hills for my son.

Having made it back to the carpark, the car was nice and cool. It was 10:3o am. Lots of people were arriving for their day at the beach and we were glad to be going home from our hour at the beach! We started the drive home. My son said “That was good. It was a bit difficult but I think it was worth it!” That was all I needed to hear! I breathed a sigh of relief.

Living with CVI is one challenge after another. And just when you think you have completed all the trouble shooting you need to do, something changes. It could be the season, weather, or time of day all affecting how you perceive the colours, line, shape, edges and movement around you. In fact you have no constants. When you have ambient colour sensitivity, your only constant is change.

To read more about living with ambient colour sensitivity – a type of CVI – please take a look at my book.

What Definition Are You Seeing the World In?

When we perceive more blue light than red light, we see the world in higher definition.

When we perceive more red light than blue light, we see the world in lower definition.

When we see in high definition we can feel separate and lonely. We can find it hard to gather and maintain our energy. We can find it hard to drink in from the world and feel part of the world.

When we see in low definition, we can feel that everything is a bit too blended. Life doesn’t draw us in and we can’t quite get hold of things. We can feel tired, apathetic, depressed, as if we have no clear use or purpose.

Look at the photograph at the top. Do you want to walk into the picture and pick up the marble or do you feel you can’t reach it or do you feel oblivious?

If you feel you can’t reach it, you may not perceive enough blue light today.

If you feel oblivious, you may not perceive enough red light today.

If you want to pick it up, then you are just fine the way you are!

I Prescribe my Own Glasses!

Having spectral sensitivity, I constantly feel that my vision is compromised. I have tried working with coloured tints but find that a pair of tints only works for a short time. When the light changes, they no longer work. This year I had not tints that worked from July to September so I decided to return to considering my prescription glasses.

Over the years I have been to the optician’s and have received a number of different prescriptions. I decided to scrutinise these. One said I have astigmatism in my left eye, another in my right, another in both eyes. Opticians have disagreed over the severity of my astigmatism and then one optician identified a squint. I looked at my prescriptions and wondered what I should do.

I had noticed previously that when when I wore glasses, the shape the frames made always felt like a rectangle going smaller over my right eye. I wondered why this was but guessed it was just the best I could do with glasses. However now since reconsidering, I feel pretty sure this happens when my squint comes into operation. Next I thought about my astigmatism. I like working with charts on my computer which are always in grids, and it is obvious when my astigmatism is a problem. I can no longer manage the grids.

My astigmatism and squint symptoms are definitely seasonal. They change with the changing light. So I decided to observe my symptoms as the year progresses, create my own prescriptions and buy cheap experimental glasses online.

So far I bought some glasses for my astigmatism in September (0.25 strength in both eyes) and they worked! Then they stopped working at the end of September and I had no glasses again. I happened to have another pair with a 0.25 in one lens so I played around with 0.5 strength by covering my eye with 2 lenses at the same time. I could see this was good so I bought a pair of 0.5’s. They are working into October in the mornings. Once the light gets brighter around lunch time, I need something else. I dared to buy some low strength astigmatism glasses with a prism (as prescribed by one of my opticians). These work great when the light is bright. In fact, I am wearing them now and my binocular vision is so good that I am able to write a blog post in October. Previously I haven’t been able to do this.

As the year develops, I will continue to observe my vision and prescribe myself any other glasses I think I need.

When my vision is compromised, I struggle with focus, tracking and scanning between distances. I have very good visual acuity and these symptoms are all very subtle. However, due to my sensitivity, these symptoms are enough to stop me in my tracks! I struggle to focus on daily activities, I struggle to read comfortably and to plan ahead, and I struggle to think outside of the box, analyse, assess and see things from another’s perspective. I feel like I am stuck, living only in one dimension and unable to move.

I Have to Wear White!

My son, who is 12 will only wear grey. And I will happily and confidently say “My son will only wear grey soft clothes – no waist bands, no pockets, no collars, no buttons.” I don’t flinch as I say these words.

Then this year I have learnt that I need to wear white soft clothes. I need to block UV, wearing bamboo clothing. And this clothing only comes in black, grey and white. I can’t wear black or grey so I have to wear white.

The other reason I have to wear white is because I am colour sensitive and most colours don’t make sense to my brain. I see them, I even appreciate them, but they don’t make sense. So even when I don’t need to block UV, I still wear white.

When outside I can wear pink or pinkish purple shoes and coats and a blue hat but that is it. I mostly wear pinkish shoes, a white hat with a piece to cover my neck and a purple scarf. I feel conspicuous, strange, eccentric. I feel like people may think I am trying to make a statement when I am only trying to make myself feel comfortable.

What do I boldly say about my son – “He will only wear grey.”

What should I boldly say about myself? – “I will only wear white.”

How come we find it easier to let children off the hook for being different but when it comes to adults we tend to move into judgement? As adults we have more conditioning to undo. It is a tougher ride but being ourselves, no matter how different we feel, is the only path to real freedom . . . and I, for one, have chosen to walk that path.

Are you worried about feeling different? Is there anything blocking you from being your real self? I would love to hear your stories. Please comment below.

My Light Sensitive Son – A Poem

My son is 12 and super sensitive to the light. The only thing I been able to do is to try to identify who he is and what he needs at different times of the year.

My Son

In January he comes to find me,
In February we like to write.
In March he likes to play outside
But by April he is nowhere in sight.
In May he shuts his curtains
And programmes his way through the day.
In June he hardly speaks,
Only Unity, C Sharp all day.
In July he likes late night picnics
And will go to the beach or the park.
In August he goes on badger hunts,
Wearing his torch after dark
In September the garden is spooky,
In October the leaves are too red,
In November he asks to do music
Now the rhythms make sense in his head.
In December he does animation
Because he can now think straight.
He creates the most heart warming stories;
It was definitely worth the wait!

Lessons from Lockdown

I have learnt that my life isn’t really about things and doing. It is about feelings and being. It is not about absolutes. It is about the subtle.

Expression is a Joy When You Can Connect

My son and I experience the spectrum differently to most people which affects the way we connect.

From January to the end of March I am struggling to see and feel enough blue light. I find it hard to process my own thoughts and what other people are saying. My 12 year old son keeps talking to me about his programming projects but unless I really focus and try super hard to understand by asking questions, the information feels like a blur to me. It struggles to get into my brain!

Then suddenly at the end of March, it as if the fog lifts. I can see and hear more clearly. However, rather ironically, when I see enough blue, my son stops seeing it. I ‘see’ this as a strained vacant expression in his eyes. He also becomes less hands on with things and appears less connected in his feet. I know he wants to take an interest in other people but he really finds it impossible to listen to any of my ramblings or suggestions! He is better playing with his friends online where the fun, humour and creativity manage to jump the gap between his desire and ability to connect.

At first when my son starts to struggle to connect, I feel all sorts of feelings – annoyance, anger and disappointment. But when I ‘get’ it, I realise these feelings are misplaced. My son is already in pain – feeling the pain of struggling to connect. He doesn’t need me adding to that. I have to accept him as he is, be patient and wait to hear his bright voice and see his quirky smile again. This will only happen when the light is more favourable for him. And lets hope that by then, it hasn’t become less favourable for me!

How Does it Feel to Have Ambient Colour Sensitivity?

Experiencing ambient colour sensitivity, I am highly aware of my brain’s interpretation of what I perceive in the world around me. I detect the slight rise in red light in autumn, the lowering of blue light in the winter, the change between predominance of red and blue light in the spring, and the lack of red light in the summer. I feel the harmony of colour combinations all around me as soothing, or the discord of colour combinations as jarring, to my system. I detect the slightest change in luminance, changing all the colours I see and the way they interact with each other, constantly, throughout the day and seasons. I have an extreme experience of contrast. experiencing a dance between colours becoming subtly darker and lighter, altering the way I see and feel line, shape and pattern.

Read more . .

Living by the Colours I See in the Light: The Joys and Challenges of Having Ambient Colour Sensitivity

Being Highly Sensitive – Our Only Constancy is Rhythm and Pattern

I don’t have colour constancy so my brain is always trying to decide what colour something is. Are my pink trousers really pink today or are they red or are they orange? They haven’t changed much from yesterday but there is some subtle change to the hue which alerts my brain that I am now seeing a different colour.

I don’t have sound constancy so my brain is always trying to decide what sound something it. My heater is clicking in the corner of my room. Is it the same click as yesterday? Or is it slightly brighter, duller, louder, quieter? Again, not much change from yesterday but my brain still has this insatiable curiosity about the quality of sound.

I don’t have touch constancy so my brain is always trying to decide how something feels. Every day I touch the cushions on my settee and my brain wonders if they feel the same as yesterday. Are they a little softer, a little too soft, a little harsher? Again not much change from yesterday but my brain cannot help itself but ask the questions.

And then there is smell. Do the chips cooking smell the same as yesterday? And taste? Do my chips taste the same as yesterday? Yes, my brain will not be happy if it hasn’t considered these things.

Exhausting – you must think! Well, yes it is! But I have a solution.

I need to work out what the pattern is. How does my cushion feel in January, February, March . . . ? What does the kitchen tap sound like and how does it make me feel in January, February, March . . . ? What colour is my strawberry jam in January, February, March . . .?

Then when that time of year comes round again, I won’t be shocked. I will be expecting each variation of the stimuli as I move through the year. Constancy, any way you can get it, is comforting. Lack of constancy is disturbing and makes us feel insecure.

I don’t have constancy for any of my sensitivities so the only thing constant in my life is rhythm and pattern.

It’s Harder for Some of Us to See Out and for Others to See In.

I have wondered my whole life why my face appears so unrelaxed when I catch sight of myself in a mirror. And it is more than this – it is as if I am struggling to connect through my eyes. There is just the odd occasion when I look in the mirror and think ‘Oh, there you are, so you do exist after all!’

Now I know that it all has to do with my difficulty in always perceiving enough blue light. I am not talking about violet or green or any other colour – no, specifically blue. I always have this feeling at this time of year from half way through February to the beginning of April. I discern enough violet light (I know that because my brain is so active, intuitive and creative,) but I am struggling to perceive blue light. I know this because I can feel quite alone and struggle to be a team player.

As I see my own and other people’s energy, I am able to find clues to connection and disconnection, that others may not have. When I perceive too little blue light, I literally see a band of low energy going across my eyes. I find myself trying to connect with people through eye contact but not really feeling the connection I want. I feel open-hearted, but it is amazing how cut off you can feel when you struggle to connect through your eyes.

I have to learn other ways to connect – voice, feelings, touch, smell, taste, movement – whilst I am waiting for the blue light to come back!