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.

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!

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!

The Light Can be Kind, The Light Can Give, The Light Can Take Away!

I was wondering today why our 12 year old son, who has atypical spectral sensitivity, comes to life after dark but only in the middle of June and October to December! Why doesn’t he come to life after dark at other times of the year? I have been so puzzled because after all, even being colour sensitive, in the darkness, colour should no longer be an issue.

Of course, I have realised today, it is because the light has given to him or been kind to him on those days. In June, even though the light is very bright, it feels more balanced to my son and so he has a better day. He feels good and can enjoy doing more things that he is passionate about. The brightness and balance somehow inspires and energises him. So by the evening his energy is actually in credit. He has extra energy to enjoy.

In the winter, the light may not be giving so much but it feels kinder to my son. In the dimmer light, the feeling of imbalance no longer rattles him in every cell of his body, like it does at other times of the year. So by the evening he is keen to find his torch and go walking in the fields in the dark. Or he is up for a badger hunt! Or he wants to go on a late evening picnic! On these sorts of evenings we see our son as he really is – confident, chatty, energetic and full of humour. He suddenly relaxes in the kindness of the light.

How is the light treating you today? Is it being kind, giving or is it taking away?

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!

I Don’t Get to Choose How I Connect Each Day

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!

Anxiety – Does it all Really Come from Within?

If you had asked me the question – “Does all anxiety come from within?” a few years ago I would have said “Yes” without hesitation. And as a result of thinking this, I have had a lot of therapy and worked long and hard with my self development, expecting to resolve my insecure anxious feelings and thoughts.

A Story

Today I woke up feeling bright and breezy and decided it would be a good day to go with my family to a small seaside town and play mini-golf. Now, for our complicated family, it is amazing to just get out of the door, let alone make it down to the beach and participate in an activity! But I felt the light was good, my energy felt good and it was worth giving it a try.

As soon as I decided to go out, I felt my anxiety levels raise. I started thinking about all the things we needed – rucksacks, juice, chocolate, tissues, paracetemol . . .! I then told myself that this was just like any trip for us. We would take the same things for an appointment at the hairdressers! So I relaxed a bit. But I noticed I still didn’t feel as grounded as I had felt when I first got up. My legs were a bit achy and physical tasks like carrying things around the house were starting to feel difficult. I then realised the light had changed – I was perceiving less red light than when I first woke up. I wondered if I still really felt like going out. But of course, with a 12 year old who is excited about the prospect of mini-golf by the seaside, you don’t really get a choice. With the suggestion comes a commitment!

So . . I committed and off we went! When we arrived, I felt the same as I had done at home – happy, pleased to be alive but ungrounded. How does this feel? Well . . it feels like my legs aren’t as substantial as the rest of me. This feeling used to make me feel insecure but it doesn’t any more because I recognise it and understand it. At the seaside today, I knew I was safe and all was well and it was this knowing that I depended on. The real give away with how my perception of the light affected me, was just how much my legs ached when I had to climb lots of steps to get to the golf course. I felt as if I had run a marathon in the last 3 days, it was so painful. Also, when the energy is low in my legs, I have a tendency to pull muscles in my knees so I have to be super careful how I I use my legs and the rest of my body.

At the mini-golf I felt just OK. When you don’t feel grounded, it is harder to feel more than OK sometimes. it takes a distraction like seeing an amazing gull or getting a hole in one to feel more than OK. This feeling of just being OK can raise the alarm that something isn’t right but I am used to the feeling now and just stay calm and go with it. As I say, I know I am safe and that all is well.

My son, who is 12, has a similar experience to me. As he is a child and not always thinking rationally, small things can knock him off balance emotionally, and have massive impact on him physically. After the game of golf, we decided to go to the fish shop which was at the bottom of a very steep hill. I could see the pain on my son’s face as he walked down the hill, and the fear in his eyes that he might not make it back to the car. I remember this feeling so well from when I was a child. I would sometimes feel that I could not walk another step. But there is nothing wrong with our legs. Having rested a little on the drive home, my son got out the car and ran to check on his pet doves. I just got on with life as normal.

Not being grounded and having low energy in our legs does affect our daily life but it affects us much more when we try to go out and have some fun!

Anxiety definitely doesn’t always come from within. Sometimes we don’t know what is affecting us. We just know we don’t feel right.