What it felt like to lose my sight

I don’t think I have ever tried to describe what it was like to lose my sight. This will be a challenge. It was a long time ago and I was a child. At the time, I didn’t analyse what was happening to me. Still, I’m going to have a go.

When my Still’s Disease (juvenile rheumatoid arthritis) was first diagnosed, the doctors told my parents to watch my eyes carefully for signs of inflammation because the disease could affect the organs of sight as well as my joints. At a subsequent hospital visit, they discovered that I had lost all vision in my right eye apart from light detection and the ability to see some hand movements. The hospital told my mother that she couldn’t have been checking my eyes but she said firmly that she had.

I don’t recall any of this. I was told about it much later. I was six and all I knew was that doctors were looking into my eyes with lights. It was not long after this that I passed a sight test at school and, on learning of my impaired vision, the embarrassed optician said I must have memorised the chart or peered round the card they were holding over my left eye. I remember the test but not the conversation between my mother and the clinician.

At this point, I don’t recall anything changing. My left eye must have taken over and I was unaware that anything was going wrong.

My first experience of sight loss occurred one day when the headmistress took us for a lesson because our usual teacher was otherwise engaged. We had been given some writing to do and I asked the spelling of a word. The teacher wrote it on the blackboard. I couldn’t make any sense of it. I could see white marks on the blackboard. I could see that they were in groups so I knew they were words but I could not decipher the word she had written for me to copy. I thought I was being stupid and kept quiet.

I continued to do the same work as everybody else and don’t remember having any further problems for a while.

At some point I was given NHS specs. In those days they were round with pink plastic frames and were not the height of sartorial elegance. I don’t remember minding very much. I don’t think I was teased. Mind you, the girl who sat next to me wore specs as well so perhaps there was safety in numbers.

Coil spring spectacles, pink plastic, National Health Service issue, 1955-1969. This photograph is taken from the Science Museum Group website and is reproduced here under a Creative Commons licence. You can find the original here: https://collection.sciencemuseumgroup.org.uk/objects/co151632/pink-coil-spring-spectacles-national-health-service-issue-1955-1969-spectacle-frames )

A while after this I started to experience a strange phenomenon. I would be reading and the print would suddenly go very small. Sometimes I would see flashing lights or coloured spots in front of my eyes. At some point someone opined that it was probably migraines brought on by my struggling to read. No one suggested any treatment or showed any particular concern. It was just one aspect of losing one’s sight, apparently.

Eventually, I moved up to the “Transition” class, the class between Infants and Juniors. I did sit very close to the blackboard, so I’m guessing that the teacher had been told that I had a problem. Otherwise, I carried on as before. I read, wrote, and did sums. Somehow, I managed to see the blackboard. The big excitement was getting a descant recorder and starting to learn to read music. That made me feel very grown-up.

I do remember the teacher asking me one day about the book I was reading. I struggled to answer her question. She said she thought I didn’t always understand what I was reading. She was probably right. Looking back, I think that the sheer effort of making out the words meant that I didn’t always take in their meaning. I still sometimes found the print shrinking away before my eyes.

In time, I got a new pair of NHS specs. The lenses were very thick, but they had red frames, which was a big improvement on the pink. I got very excited about this and I think they must have helped me for a while.

It was while I was in this class that we had the school trip during which a duck psyched me out of half my lunch. (For more details, see my post “Duck Terror!” from 16 June 2020.) I know my mother was concerned about me going. She felt it was asking too much of the staff to take responsibility for looking after me but I pleaded and got to go. I still had quite a bit of useful vision and didn’t think of myself as different from anyone else, whatever my mother (or the duck) had to say about it.

Then something happened.

At some point over the summer of 1967 I lost a lot of sight very quickly. As I recall it, when I went home for the summer holidays, I still had a lot of sight, but by the time I went back to school in September, I was really struggling.

I remember that I had  a brand new pen – not a biro, but a fountain pen. I was very proud of it. I could write with it, but I couldn’t always read back what I had written. I remember quite clearly one day trying to write the date. An image of the word “September” is firmly fixed in my mind, but after that the letters I wrote got smaller and smaller and started to slope down towards the corner of the page. The words weren’t neat, and they weren’t intelligible. I couldn’t read them, and neither could anybody else.

I could no longer trust myself to be able to submit legible written work.

I couldn’t read any of the textbooks, either, but strangely enough I could still draw. In fact I continued to do so on into my teens, even when I had to press my nose right against the paper and could barely see what I was doing. But back in my primary school, the teachers finally began to take my visual impairment seriously. I wasn’t allowed to go out at playtime in case I got knocked over. Kind friends volunteered to stay in and read to me.

I went into Moorfields Eye Hospital in the October of that year but they were unable to restore much of my sight. After that, the hospital recommended that I be registered blind so that I would get the help I needed.

A social worker came to visit with a £20 voucher from the RNIB. With it, I bought something called Unilock letters. These were plastic squares with print and braille letters on which you could join together to make words. I also bought a tactile draughts game and a game of “Beetle.”

But, being registered blind, I couldn’t go to school any more.

I was at home, then, for seven months while Essex County Council twiddled their thumbs and did nothing about my education until, one day, in anger and frustration, my mother rang them to tell them I was in tears because I was bored stiff and wanted to go to school. Finally, things began to move and eventually I was sent to Linden Lodge, a special school for the blind – but that’s another story.

All this happened a lifetime ago and it is difficult for me to get everything in the right order now. As you can tell, my memory of those days is patchy. As far as I can recall, though, I don’t think that I found the process of losing my sight especially traumatic. In my own childish way, I took it in my stride. On the other hand, when it finally sank in, the realisation that I could no longer read was absolutely devastating. I couldn’t wait to learn braille and get back to reading.

I also remember gradually losing the ability to see the television. This was nearly as frustrating as not being able to read. My family were good audio-describers, but some programmes were just too tricky to explain. Cartoons became impossible and describing what was happening in fast-action films and detective shows was sometimes beyond the powers of even my valiant family.

Looking back, there were other things that I minded, too, such as my inability to participate in games at Girls’ Brigade or to read aloud in Sunday School. The gradual realisation that I was not the same as everybody else did have an effect on me. I did mind and I did have nightmares about it but I eventually learned what all of us who have disabilities and have spent time in hospital as children and away at boarding school have learned, and that is stoicism.

I learned to put up with it.

In fact, a friend and I were talking about this recently. Maybe I’ll write a blog about that too.