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!
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 green 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!
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.
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.