How I see the spectrum often makes me feel that I am watching TV in HD and then someone has turned the setting up one notch further. I feel that the branches on the sky are a little more pronounced than is comfortable and all of my 3D perception is very subtly altered.
My perception of sound is also altered meaning that sounds stand out more than is comfortable. I am constantly aware of every sound around me. This means the world can feel a bit harsh or stark. I tend to prefer to be in places where there is less clutter and less intrusive sound. Struggling to process movement also adds to my difficulty with being in busy places. And I struggle to engage with practical activities such as cooking.
Now my fourteen year old son is different to me. It seems that he may have the experience of waching TV in low definition. Things aren’t unclear or fuzzy but they seem to be more blended. He doesn’t like clothes with tags on because he says they look tatty. He worried that he had wrecked our plastic kitchen chair when he dropped some raspberry on it from his apple and raspberry crumble. He can’t seem to see stains as separate from the object that they are staining. He is distressed by a spot of blood on anything. He checks all our cutlery for marks before eating his lunch. He struggles to engage with practical tasks such as spreading pate on his crackers.
My son’s perception of sound is also altered. He is fine with mechanical sounds like a spinning washing machine but really struggles with speech and can’t tolerate one note of singing. I wonder if sounds are too blended for him. He is happy listening to a YouTuber who has removed all the gaps in his speech so sounds like he hardly takes breath! He doesn’t struggle to process movement. He likes it. He thrives on having buzz around him as long as he doesn’t need to engage with it practically.
I am much more likely to be over-stimulated. My son is much more likely to be under-stimulated.
And this is why my son loves cities! Well, for a short burst of time anyway!
I often see too much blue and not enough red. When red tones are missing, nothing feels complete.
When I went back to school as a child the trees were losing their leaves and they didn’t feel compete.
The pumpkin of October didn’t feel complete and even less so with holes in.
The flames dancing around on the fire in November hurt my eyes and didn’t feel complete.
The presents and tree of Christmas didn’t feel complete. The colours and patterns of my clothes didn’t feel complete.
The colours, shapes and patterns of the food on my plate didn’t feel complete.
People’s voices, music, the sound of a bath tap didn’t feel complete.
A hug or a kind word didn’t feel complete.
Nothing felt complete until New Year when there was a bit more blue and red light and my hope of completion started to rise. By Easter things were feeling better and by my Birthday in May I could process the patterns on my new Birthday cardigan.
And then in June, that old feeling of incompleteness started back again. On a sunny day when all looked so beautiful, the garden felt incomplete, the beach, the hills, the woods – they all felt incomplete. And vegetables and meat started to become very slightly blue and colours appeared in general a bit drained, like someone was forgetting to add red to the world. I felt unsafe from September to December but now it was a different feeling of being unsafe – the light felt brash and harsh and I could feel exposed and lost. So my ‘normal’ is to feel ‘incompleteness.’
As an adult I understand it. It is all about my perception. The world doesn’t change like I think it does. My perception does.
My experience has taught me to trust and taught me to have faith. These are the two things that are constant in my life. These things are unchanging.
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.
When we perceive moreblue light thanred 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!
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.
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.
I wanted to be balanced – I really did – but that is not my destiny.
I live in a nearly continuous state of imbalance because of my reaction to the light spectrum. In fact, if the light ever feels balanced, I feel quite lost and don’t know what to do with myself!
Today for instance – another cloudy rainy day in the UK. Thankfully I perceive enough blue light to feel open hearted. However, I don’t feel grounded (low red light), I always have my friend, the violet light, though, energising, inspiring and pushing me on to higher and greater things.
I can do much with my perception of violet light. I can get to the heart of things and put on my analytical creative hat. I can work with data and make deductions and build theories. I wouldn’t become the crazy analyst if the light was balanced. I am pretty sure I would be doing something a lot more mundane!
Balance is nice if you can get it but maybe a little ordinary. It is imbalance that leads you into the extra-ordinary and and if you hold its hand, it will take you on the most exciting journey!
Colour constancy is learnt when we see things again and again. If we see a red apple, our brain files that piece of of information. Next time we see a red apple, we recognise it. We don’t usually mind if it is a little more pink than the last one, or a little more crimson . We don’t usually mind if the light we are seeing the apple in, is a little more blue or a little more yellow. To most people, it is still a red apple because most people learn colour constancy.
But what happens if you don’t learn colour constancy? What happens if every time you look at an apple that someone else says is red, your brain challenges that suggestion. What if your brain says “Is that really red, or is that orange or even slightly green ?” What if your brain says “I know that apple is red but in today’s light it really looks yellow and in yesterday’s light, it looked orange.”?
Well, that wouldn’t be too bad if your brain was happy to just flick through all these colour possibilities, but it isn’t good if your brain just can’t process all the confusing information. And this is what it is like for me and my son. When we look at a colour, our brains tell us whether it does or doesn’t doesn’t match the light-waves. If there is red in a colour, but we don’t perceive enough red light, then our brain gets confused and we get all sorts of nervous system symptoms. These could be going hot or cold, getting a headache, a sore throat, feeling tight in our chest, getting indigestion or feeling knocked out of ourselves.
It is easy to think that these symptoms are just stress or some other health condition but we have tested this over and over again and they are always caused by the light.
I have been thinking about all the things that influence our state of well-being outside of our brains, and our own brains are challenging enough for some of us! Or – is there no such thing as anything outside of our brain because our well-being is all intertwined with our relationship with the world?
With or without knowing it, we are all constantly influenced by:-
Our visual perception
Our perception of sound
Our perception of smell
Our perception of taste and texture
Our perception of touch
Our perception of balance
Our perception of colour
Our perception of light
Our perception of temperature
Our Cycles and Rhythms
Our feelings and thoughts
The quality of our family relationships
The emotional climate around us
Atmospheres of places and buildings
We can’t really separate out these stimuli and and the affects of them on our well-being. I got up today and saw there was sheep on the hill ouside our bedroom window (that weren’t there last time I looked) and felt comforted. I went to the other side of the house and the clouds were as black as black. I felt slightly less comfort but a sort of excitement as the light was bright on the garden, but the sky was dark. Then someone used the tap downstairs and I felt less comfort again, and rattled, and closed the door of the room I was in. Then my husband came in and told me how dark the sky was (!) and I automatically turned to look at it, without thinking first. The colour hurt my eyes. Now I have the sound of hail on my window which sometimes I love, but today I am not so sure about.
And so my day will continue . . a mixture of influences from my own thoughts and ideas, to the weather, light, colour, my son’s feelings . . . I am intrinsically connected to these things. There is no point in seeing them as rude interruptions or nuisances. They shape who I am and what I am going to do. I need to welcome them with open arms and let them move and inspire me.
What I do know today is that this exciting weather is giving me the energy and inspiration to write this post.
We are not islands when it comes to our wellbeing? What is influencing you today?
Having studied all the emotional psychological connections with what I feel in my body, that I can, plus all my reactions to the way I see the spectrum, I am now convinced that I don’t get to choose how I connect each day.
I thought I could heal and become all things I wanted – to be open- hearted, enjoy intimacy, give my gifts to world, have a strong powerful voice, follow my vision, be happy to be vulnerable, work with my cycles and rhythms and find where I belong.
And I have achieved all these things to a point. But it wasn’t the point I was dreaming of! I thought if I could become whole, I could just get on with things!
But wholeness isn’t all about me. I can’t be whole by myself. It isn’t possible. So God made me really sensitive to the light spectrum just to make sure I knew that!
But, ever ambitious, I have had a similar attitude with the light spectrum, almost expecting to be able to outsmart my reaction to it. After all, if I don’t perceive enough blue light, then I just need to be a bit more open-hearted. If I don’t perceive enough red light, then I just need to be more aware of my physical connection with the world
But how far can this new insight take me, I wondered?
If I just open my heart, could I get on the next plane to the Middle East and help refugees?
If I just let in trillions of support, could I foster a houseful of children?
If I do everything I can to make myself feel really secure, could I jump out of a plane?
Aaaargghhh!! NO, I CAN’T
I can heal myself, which I have done, but now I have to be part of the world. I don’t perceive enough red light in February so I don’t even feel grounded enough to bake a batch of biscuits, let alone jump out of a plane! I can’t make myself feel grounded. I can only do things that help to give me a greater feeling of security.
I can’t make myself feel anything. I can only be open to feeling. I don’t get to choose how I can connect each day!