Young Childhood and Primary School
As a child I often had stomach aches, felt allergic to foods, had hay fever and felt ‘not safe’ in the world. When it comes to my sensitivity to colour, I remember being given my sister’s pass-me-downs, and because they didn’t yet fit me, they were stored in a wardrobe. I sometimes spotted something I really liked and couldn’t wait to wear it, but by the time I could wear it (several months later), it seemed to have changed colour and I would say that I don’t like it any more. I was also a very unpredictable and picky eater. I would always really dislike seeing a meal on the plate and couldn’t stand going to a restaurant where the plates were bigger. I would just burst into tears at the sight of the large oval plate. Sometimes I liked things and sometimes I didn’t. When questioned about it, my siblings would knowingly say “It’s Friday today. Jennie doesn’t eat peas on Friday!”. I just about managed primary school because I like learning and found the learning possible, but found all the times when we were all together – in the playground, assemblies etc. – made me very anxious.
I remember finding September, when I started school each year, feeling like a very strange month. The colours and patterns of trees and leaves and grass all felt strange. By the time I had cycled the 2 miles to school I felt even worse. I couldn’t face assembly so used to take ages to walk to school with my bicycle, so I missed it every Tuesday. I felt anxious all the time at school and struggled with the learning. Things weren’t in nice neat boxes any more like they were in primary school. There were too many letters and numbers on the blackboard and not enough light. There were too many complicated concepts and no-one to put them in order for me. I used to feel that I just had to get out of the classroom and at 14, was diagnosed with agoraphobia. I would go into the playground but would feel no better. I would go into the cloakroom and wrap myself in the coats and hug a heater until I felt better. I often went to the place my mother worked when I couldn’t manage school. She was a laboratory assistant in another school. I would sit in her nice light office and she would give me jobs to do. I remember being given hundreds of tiny white cubes to count and sort. I found this deeply comforting. Little did we know then that this was helping me to re-organise my brain.
After this . . .
I would say I became a bit of a shadow of myself, never knowing when the anxiety would be present. I took O levels, A Levels and went to College. I’m not sure how I managed those years. Maybe the environments were a little better for me and also I was choosing to study.
As soon as I went into the big wide world, anxiety hit again. I was a primary school teacher now and just couldn’t keep everything in my head that I needed to be there. And there were too many children and too much clutter! I only managed this for a year. By my mid 20’s I was suffering with symptoms that felt like burn-out. At 29 I married and by 31, I had a virus that led to post viral fatigue and I had this for 6 years. I got myself better from this and back to what I felt was full health. At 39 I gave birth to our son, Luca. When Luca was one I was diagnosed with Hashimotos (swinging thyroid condition). A few years later I was told this had corrected itself (based on blood tests.)
Next . . .
I just got on with life as best I could, now working as a one-to-one music teacher. I still had about 10 mild symptoms that I didn’t understand.
Then in May 2017 (when I was 49) I found a bookmark on my computer for Irlen Syndrome. I had a look at it and thought maybe it might explain my extreme light sensitivity. I arranged for a diagnostic. When the lady came and gave me all these different coloured tints to try, it was a real challenge for me. I only had to pick up some pairs and lift them up towards my face, to know that they were wrong. I could feel strange sensations in my arms and my head. Sometimes the diagnostician would notice that I would actually move the glasses physically to one side of me, without me realizing. Then trying the glasses with my eyes closed I would say all sort of things:-
“These make me feel like my eyes are tightly stuck closed”
“These make me feel like I can open my eyes.”
“These make me feel like I can breathe better”
“These make me feel that I have more contact with my feet.”
“These make me feel taller,”
“I can’t even bear to look at the colour of these.”
When we found a pair that felt right, I felt amazing. I could see things in an integrated way for practically the first time. My binocular vision seemed to be working perfectly. And no lines were jumping out at me. Everything was just soft and I felt soft. I felt taller and stronger and more integrated. Things didn’t seem so far away. I remember noticing that I went right up to things like the work surface in the kitchen. Things seemed in line with each other. Even places, like the corner shop, didn’t seem so far away.
One thing was strange though. I remember saying “But green still doesn’t look right through these glasses.” And that was really when the penny dropped about my relationship with colour. I realised that focusing on colours didn’t feel right to me, contributing to my unexplained nervous system symptoms.
I ordered my glasses and when I collected them 2 weeks later, they had the same wonderful integrating effect. But 2 days after this they stopped working. I thought the light was getting in the sides so stuck on pieces of cardboard, but it didn’t help. The spectrum had changed in my perception. I went on to have another 2 Iren diagnostics that year and had 2 more pairs of glasses, but the same thing happened. They quickly stopped working.
I still have multiple symptoms every day. They range from mild to not so mild. I move from feeling that I am struggling to function, to feeling able to engage and connect in some way that makes me happy. I find it has become easier to help myself with my issue with colour. I live in a neutral house and wear colours that match the light in the moment. I use tinted glasses and lighting to help me. I find my difficulty with pattern is much harder to work with, though. Outside, how I see leaves and blades of grass, and the outlines of branches on the sky all feel disturbing to my nervous system. Inside, how I see piles on carpets, the relationship between furniture on walls, creases in curtains, patterns in wood and vinyl floors etc are all disturbing to my nervous system. It seems that it is not just about focus because I can wear prescription glasses to make my focus feel pretty good. It is as if sometimes lines stand out too much. Sometimes, it is as if I have tuned the TV into HD and then gone up a setting from there. At other times things seem to blend too much and it is as if I can’t tune in HD at all. I started to call my experience of colour ‘general tonal discord’
In 2019, one of my music students mentioned a physiotherapist who he found very helpful. In fact he called him a healer. My ears pricked up and I felt that I should meet this man. I booked an appointment for March 2020 but of course with the pandemic at the time, I didn’t make that appointment. In fact we didn’t get to meet in person until one very cold December day in his physiotherapy room on the Dorset coast in 2021. This meeting changed my life because someone finally recognised the challenges of being me, but also my gifts. And he discerned that my difficultes were a result of the conflict between my challenges and gifts. I hadn’t accepted either. I am still on the journey . . .