Irlen Syndrome – If we are not at one with the light we can’t shine!
Irlen Syndrome – If we are not at one with the light we can’t shine!
Today I needed to book an appointment for my son to see a dietician. When I realised that I had to go to floor 10 – the top floor of our local hospital – I broke down into tears.
Last time I had to go to the top floor of the hospital I used the stairs because I don’t like lifts. As my husband and son needed to use the lift I asked someone to accompany me but I didn’t feel they understood my anxiety which made me feel worse.
And what was my anxiety that day? Was it the about light? Was it about the colour? Was it the echo of people’s feet and voices down the stairwell? Was it the feel of the cold hard walls? Was it the feeling of turning round and round too often for my brain?
Or was it all of these mixed together and compacted into one big package of extreme sensory overload?
I think it was and this is why the memory of this day made me cry.
I wanted a way out so I asked my son how he felt about going back to the hospital? I was secretly hoping for an “I’m not going back to that place!” but instead he said “Oh yes, I think it will be fine.” Now I was on my own. I couldn’t phone up the hospital and say that my son had anxiety and needed help. I would have to own my anxiety.
After much procrastination I took the bull by the horns and phoned the dietician back and said those liberating words “I have a processing problem.” I explained I didn’t like lifts or stairs. The dietician was fine about this, even though I detected faint surprise in her voice! She simply said she would refer us to the community dietician who could visit us at home or a GP’s surgery
I felt 10 feet tall. I had faced my greatest fear and admitted my greatest need. I didn’t feel silly. After all who can say how the brain of another person makes them feel when they are on the 10th floor of a building? Who? Nobody.
So next time you don’t want to look silly and admit your greatest need, remember not to use anyone else as an excuse, to be brave and stand up for the hidden no-diagnosis condition which is Sensory Processing Disorder!
I gave up trying to complete the decoration of our home and make the perfect recipe file long ago (!) This is not the sort of ‘complete’ I am talking about.
I am talking about a more momentary feeling of something being whole. For instance yesterday I was having a hard day and I picked up my ukelele and sang with the intention of cheering myself up. I didn’t sing or strum loudly. I explored my voice and my ukelele until I found a sound, a tone that calmed and cheered me. For a moment as I experienced the blend of my voice with my ukelele just as I wanted to hear it, I felt complete.
I am coming to realise that the reason I am looking for ‘complete’ is that my world is often feeling visually fragmented. If you could borrow my eyes and disconnect them from my brain you would say “Wow, these are good, what are complaining about?!” But when you connect them to my sensitive brain the story is very different. My eyes are constantly alerting me to the fact that things are not complete – things don’t integrate, colours don’t blend.
I am also realising that I have 2 types of incomplete – separation and partial separation! Yesterday when I played my ukelele I was feeling separation and the completeness of what I created was like healing balm to me. Today my Irlen glasses are helping with my visual processing and I have moved into partial separation. My need to make complete isn’t quite so strong so playing music doesn’t feel powerful any more. But a little voice is still saying “There is something to complete.” And so I am writing this blog.
My blog is a journey about trying to complete something – trying to complete my experience of the mystery of connection and healing.
I learnt a big lesson from my 10 year old son today.
He is not seeing colour well so we bought him some enchroma glasses. He said the outdoor ones were too strong so we bought him some indoor ones. He tried them out today and thankfully he said things looked better. I started asking him about colour and he said “Don’t ask me about colour. Colour doesn’t matter. It just matters that I feel better.”
I just thought this was an amazing thing to say. As someone with Irlen Syndrome, colour doesn’t always look great to me. I’m bothered and disappointed. But today I realised, like my son, that colour doesn’t matter. What matters is that I feel ok,
“So I can’t connect with colour today . . .then I have to find my connection and my sense of security deeper down in myself.”
“So I can’t connect with pattern today and see the big picture clearly . . . then I have to feel my deeper rhythm and my deeper sense of purpose.”
Maybe this is why some of us struggle to connect in the ways that others easily connect – because we have to dig that little bit deeper!
I have always wanted to BE something. I thought if I could just BE something then I would feel ok about myself and others would be happy with me.
So what should I be? Shall I be the music teacher as I have a musical gift? Should I be the artist as I have a desire to express my childlike spirit? Should I be a healer so I can feel part of other people’s positive change? What shall I be?
ME – just ME! The person who gets up in the morning and says to God “What shall I do today?” The person who looks out of the window and gets carried away with seeing a flock of crows perched on the branches of our big tree or the pounding of the rain on our driveway . . .the person who may pick up a musical instrument only if it feels ok to feel the strings, sense the rhythm and hear the tones TODAY . . .the person who is looking for a hug and kind words by 10:00 in the morning . . . the person who finds the green of the grass too bright some days, doesn’t like crowds or parties and loves chocolate truffles . . the person who likes to scoot around the park wearing her purple coat and summer beanie. . . the person who loves to help others when her own world is calm and organised enough for her to do so . . .
Who should I be? – ME – just ME!
Feeling insecure for a reason that feels outside of your control doesn’t always equal fear
Feeling easily stressed or overloaded by small things doesn’t always equal anger
Feeling helpless and unable to change something doesn’t always equal guilt.
But it can appear as this to those that are close to us. Maybe they pick up that deep down this is how we are perceiving ourselves.
When I had my first diagnostic for Irlens I chose a tint that would stop the glare but not change too much else. I didn’t want to admit to myself that there was much wrong with my view of the world. And I didn’t want to take my glasses off and feel that things appeared worse than with them on.
However after struggling with my first tint for 3 weeks I realised there was something wrong. I was still feeling tense and out of sorts. So I had another diagnostic and this time I decided to push the boat out and look for something new – something better. After going through most of the box as before and saying ‘not right’, ‘too strong’ to most of them, we chanced on a pair of rust coloured tints (still in the neutral section.) I put these to my eyes and remember saying to my diagnostican ‘Wow, what is in these things?’ and I said ‘Wow’ quite a few more times! I asked what colour the lenses were putting back and I was told they weren’t putting anything back, just balancing the colours. Whatever they were doing, I knew I had to have these lenses!
When my lenses arrived I still felt ‘Wow’. When I wear them I feel taller, more confident, happier, more grounded and that my diaphragm opens up. The really amazing thing is, though, that I feel cosier and warmer, having had a temperature problem for my whole life. I actually feel that things are a tiny bit closer together (almost imperceptible and yet I feel it). I also feel that I want to be closer to things like a table or a work surface in the kitchen. I feel as if my depth perception has changed but more than this, my new experience of colour is drawing me more into to the world when I used to be of a hands off person. I didn’t realise that the colour of the work surface was repelling me – not good when you want to cook and wash the dishes! I didn’t realise that the corner shop felt miles away because my feeling associated with colour changed my perception of distance. This explains why I have suffered with separation anxiety even as an adult.
So what is in my lenses? Obviously a colour I needed to help me see the warmth in the world!
We all react in different ways to our life experiences and these reactions become habitual. For example providing that as a child we have experienced comfort when we have been frightened, as an adult we will naturally self-comfort or ask for comfort in a similar situation. In our bodies and ourselves we will immediately feel better. However if we weren’t comforted as a child our reaction will be the opposite – we will have no natural reaction to self comfort and will repel comfort from others. In our bodies we will feel tense and out of sorts. Somewhere within ourselves we hold the memory of an event that happened to us way back in our past.
We need healing when we hold negative memories which block our ability to enjoy the positives in ourselves and our lives.