Creating Pathways to Understanding

MearesIrlen Syndrome – visual dyslexia

A true story from 36 year old Sharon from Wirral.

I’ve had both my eyes surgically aligned after damage to the 4th nerve behind my ear left me with really bad double vision. I was out one night in Liverpool and a young lad kicked off on a male who was with us first, and looked as if he was walking away; but he ran back and punched me in the side of the head and jaw, it was one single blow, but the pain seared in my jaw and ear and my vision felt as though it had swung open somehow. It was weird, I couldn’t tell what was wrong at first because it was so disorientating. Then I was taken to the Royal Liverpool Hospital, which is when I realised what it was that was going on, I walked into a wall, but plain as day I could see a doorframe there. I thought at first that there was a double x-ray machine and when they went to put the frame around my face to keep me still, I kept thinking it was going to get me in the face when they moved it, and then I realised it was double vision, accept it was so wide and one picture was much lower than the other, it was like being in two rooms at the same time!  It was like living in a nightmare at first.

It was really nauseating at first and nothing seemed to be where it was supposed to. I bumped in to things and constantly missed steps. I even fell down the stairs and broke my coccyx (tail bone) going down ‘the wrong set of stairs’ as I looked down (although to be honest it was pretty funny too). My hairdressing career was over! Everyone looked like they had two heads and I couldn’t keep my eyes fixed in one place to gauge anything. Over a period of a few years I had each eye’s muscles redistributed around my eyeballs, which worked phenomenally well in the end! It was petrifying, but staff at St Pauls Eye Unit in Liverpool ophthalmology was absolutely amazing and totally reassuring. It was scary but not really too painful considering the stitches all around the eye. It was more squeamish rather than painful though. It was never any worse than when you get a bit of soap in your eye. Not nice but so worth it for the results.

I was diagnosed with post traumatic stress disorder. I felt panicky going out and was dealing with the aftermath of the random assault. I felt like I had lost all my security because I couldn’t work anymore and earn; and I also felt like one single blow can change your life forever, I still sometimes feel edgy going out, but I have ways to deal with it much better these days. I had lost confidence and ability and felt quite low for a while, so recovery took me a long time and counselling arranged by my GP really helped, whilst cognitive behavioural therapy has been the most effective thing for helping my confidence.

I decided it was time to move forward in my life. I found that after the first lot of surgery when I decided to start training in a new career, one that I could do, so I enrolled in a course at Wirral Met. It was so difficult to read with the visual problems, I had to cover one eye up, then the other and couldn’t do anything near like what I wanted to. I would fall asleep if I was trying to concentrate for too long and they become painful if I held my focus for too long. Once the second eye had been done it was dramatically better again. Mr Chandna my specialist surgeon at The Royal Liverpool Hospital did an amazing job once again. Most of the physical shaking when I tried to move my eyes subsided, and they no longer looked wonky to other people, which made me feel a lot better. However, I was still struggling to read and write. The words on the page wobbled up and out of the page, like the writing that comes up on the screen at the end of the Star Wars movie. It is as though my eyes try to focus on the text and the background at the same time, so they sometimes looked like the words were jumping off the page or swimming and breathing in and out. Still it was a major improvement, I was made up. The residual effect means my eyes sometimes shake and I do still get double vision, but it is more like an outline, rather than feeling as if you are somehow in 2 rooms at once, which was so disorientating. I finished my course and got a HND in Health and Social Care and felt so good about achieving it despite my problems that I was motivated to carry on and went to get a degree at Liverpool John Moores University.

This was when things really become easier. I don’t consider myself ‘disabled’ even though I have visual problems, so I was reluctant to get an assessment from a disability advisor from the university who contacted me. Because I had been honest and said I sometimes struggle, my tutor recommended I just speak to them and if it wasn’t for me then there was nothing lost through going to see what they had to say. It was the best thing I could have done! Although it was difficult admitting I was still having problems, the minute I did they took steps to try and make sure I had the same access as everyone else.

They got me a laptop computer; a head set and screen filters, which all made a phenomenal difference. It came with soft ware called ‘Naturally Speaking Dragon’ that recognised my voice and could type up what I was saying as I spoke to it. It also had Claro Read Plus, which can read out anything on the screen. I had a Dictaphone, mobile Pen Link scanner so if I’m struggling to read you can use it wherever you are! It was brilliant. I never looked back.

They arranged me to have an assessment for glasses at Steven Wilcox Optometrist in Childwall Liverpool, who has a diagnosis machine for these sorts of problems. I was diagnosed with Meares-Irlen Syndrome; which is frequently described as a type of visual dyslexia. I still needed a slight prism lenses, but my new glasses have green and blue tints in which made reading dramatically easier to read for longer periods than before. Okay so vision may not be as good as it was, but now I know I can always manage. The university even helped me with aspects of the anxiety I experienced by paying for taxis home if it was getting dark by the time I came to leave during the winter. They made allowances and very incredibly supportive. The sense of finding ways to still achieve my work deadlines for uni was really empowering, I felt like I was regaining control in my life.

Every time I challenged myself a little more and managed to do something new, or overcame something, I’ve felt better straight away. I got my degree and felt a really good sense of accomplishment. Now looking back I think I am glad that I am not still hairdressing, and I can’t help but feel that it is in times of adversity or difficulty that we become more resilient and resourceful.

These days if I have double vision because I’m tired or if it’s affected by other medication I can accept it, have a rest and still find ways to get around it when I need to. If you are thinking about doing any sort of courses or training and have trouble reading or are worried that you might have dyslexia, speak to the collage or uni, but don’t be put off because it is amazing the ways that people and technology can help! Also if anyone out there has visual dyslexia or think something like that may possibly help you, try contacting the British Dyslexia Association for testing or advice; or contact the optometrist to see if they can help. I didn’t think coloured films and glasses would help as much as they do, but these days there are incredible ways to get around these types of problems.

—–  Sharon 36 Wirral —–