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.

The Wonder of My UV Blocking Clothes!

Every year right in the middle of the year, my light sensitivity symptoms become more severe than usual. I start to feel that I am constantly overheating especially if I go outside on a sunny day. And even if I stay inside, I feel that something too powerful for me is coming in through the window. I avoid standing less than a couple of metres from a window if I can do this, or I shut the curtains. It is not just the heat feelings. I also feel agitated, nervous and have digestive issues.

This year I started to look into the idea of UV blocking things. I started with a UV blocking umbrella which I used in the garden on a sunny day. I noticed I felt more calm and no heat problem as I would usually get. I didn’t suddenly need to run inside. I lingered and felt that I could think straight and actually have a conversation. Pleased with my findings, the next thing I bought was a UV blocking beach tent. It hasn’t had much use yet but I know it has potential. Needing a larger space, I then bought a UV blocking gazebo (as in the picture). We had a simple white gazebo before but somehow the idea of it was always a lot more pleasant than actually using it! I would immediately feel my symptoms worsen as I stepped into it but I didn’t know why. With our new gazebo, the temperature is about 5 degrees lower than in our last one and the light, heat and UV is reflected. I have been drawn to sit in this gazebo on some sunny days and found the experience very pleasant.

So now I had my experience outside all sorted out, I needed to work on my experience inside. I would walk into to a room in the middle of summer and not really know what to do with myself – the symptoms were so unpleasant. So we bought some UV blocking window tint and had moderate success and stress trying to apply it to a couple of windows! It made an immediate difference and makes what I see through the window appear softer without losing any of its life. The tint I chose is very light – the sort they use in museums to stop paintings and other artefacts from fading. We plan to tint the windows throughout our whole house now.

So this brings me to . . .the wonder of UV blocking clothing! First of all I read about it, and the articles I found suggested it was a bit of a gimmick. They said that all you need to wear to block UV is fabric with a fine weave, and dark is best. Well, I had nothing to lose by trying some so I bought myself a white UV blocking top. It was a high UV day when I tried it on. I was struggling to use my computer one afternoon and I have a pop up office downstairs where I sit about 2 metes away from a window. I put on my new top and instantly felt better. I felt less hot and more calm. I usually wash things before I wear them when they are new but once it was on, I wouldn’t take it off! I didn’t take it off until bed time and then it was straight on again in the morning!

Next I bought myself UV blocking trousers. Now I wasn’t sure about wearing white trousers but being colour sensitive I can’t wear black or grey, and colours were limited. When they arrived I gave them a disdainful glance and left them in the box for a week or so! Then one day I was sitting at my computer with my usual mild stabby pains in my gut and thought, “maybe I do need to wear UV blocking trousers. Maybe I could eliminate a few more symptoms.” So I put them on and they were wonderfully comfortable and as with the top, I immediately felt my symptoms improve, and wouldn’t take them off! I felt more grounded and present in my legs and my gut felt more calm.

Now I wear UV blocking clothes most of the time. My theory is that because I experience the spectrum as imbalanced, UV is affecting me more than others. It is particularly problematic on days when I don’t perceive enough red light. And I don’t think it will just be in the summer because I have always had unpleasant symptoms all year round.

And this is the wonder of my UV blocking clothes!

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!

I Really Feel I am Out When I am In and In When I am Out!

Someone asked me yesterday, the first thing I would do when we come out of lock-down. And, surprisingly, I couldn’t think of anything!

I always feel ‘out’ because it is about having an outward feeling.

I feel like I am ‘out’ when I look out of the window and notice the changing light and seasons.

I feel like I am ‘out’ when I connect with people all across the world through my writing – ideas and thoughts that come to me in the moment.

I feel like I am ‘out’ when I connect through my music – again in the moment – that little piece of inspiration unique to me – that I choose to share with others.

I feel like I am ‘out’ when I connect with others by phone, skype or e-mail.

I feel like I am ‘out’ when I help people find their voice from the cosiness of my dining-room.

When I go to the beach on a sunny day I don’t feel more out than all of the above . . or I might even feel more in! I can be surrounded by loads of people but never exchange a smile or a word. I feel more ‘out’ speaking today, sharing a little piece of my heart with you.

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