Hopes and Fears

Losing some of your sight is one of the scariest things to go through and with it comes all sorts of emotions and experiences that you have to work your way through. For some people it happens slowly and for others it can happen very suddenly over a few days or even overnight. Unfortunately I have experienced sudden sight loss, about eleven years ago and more recently, a few weeks ago. Whilst it is not life threatening; which is something I have to keep reminding myself in the early days of adjustment to provide some balance to the situation, it is challenging, scary and something that is difficult to experience.

My experience involved waking up with eyes that kept 'flickering', they couldn't decide how to focus and this made looking at things very difficult. I noticed that my left eye had overnight lost significantly more vision, and it's always been the worse eye, and I've also lost vision in the bottom part of my eyes which means my field of vision has got a lot smaller. This has impacted my every day activities in so many ways. When preparing food, I'm unable to see both hands at the same time, so if I'm chopping vegetables, I can choose to either look at the vegetable or my hand operating the knife (I'm left handed) but never both. I can't read the notes below the lines on my guitar music, so I'm need to learn new pieces from memory. I can't see my whole face when I'm putting my make up on anymore, I can see independent areas like my mouth, one eye etc. I cannot see some areas at all - particularly when applying make up to my right eye and have to take a leap of faith that I haven't made a mess of my mascara! I cannot see my whole outfit that I'm wearing to decide on its overall effect. I have to magnify the computer more to read, and reading in general is more tiring. Watching TV is more challenging due to my ability to see detail being reduced, and also we only watch TV in the evening which is when my eyes are most tired and can't always focus properly.  My husband is amazing and he has become my personal describer, telling me about all the things I cannot see as well as I used to. These are all the practical difficulties but there are emotional ones too....

When sight loss happens it gives me a huge sinking feeling, my heart feels heavy and sad because of the sudden loss. It is something that can't be escaped from, every action is a reminder of sight loss and each time something is harder as a result of failing sight, it feels like a massive blow. The only escape is when it is bedtime. It generates feelings of claustrophobia, it feels like living in a box being increasingly shut out from the rest of the world. Finding items is so much harder and tiring because I have to scan more with my eyes and I lose track of where I have looked - I need to learn to more methodically! It is hard conveying the news to family and friends, knowing how to tell them, and responding to different reactions. I hate giving sad news and it is not easy to do. Life outside the home is more confusing, there is a greater feeling of vulnerability, shopping is scary and takes longer and because it is a hidden disability other people have no idea that these difficulties exist, unless they know you. Experiencing sight loss evokes feelings very similar to those experienced when someone you love has passed away, fear, sadness, anger, uncertainty, vulnerability, adjustment to new situations.

Despite all this uncertainty, sadness and fear, time does heal, I have been through this sort of thing before and feel experienced with my coping strategies. It is best to do things in my own time and simply allow time to adjust. My first shopping visit after my sudden sight loss was quite scary, especially because I had my children with me so I needed to keep an eye on them. However, it was successful and I know I can get out independently. I haven't cut myself (yet!) whilst preparing food although I do keep knocking things with my left arm because I keep forgetting to maintain awareness about my reduced vision. I still get really sad when my children try to show me something detailed, usually a picture in a book and I just can't see it. However, I need to learn to use my magnifier more and ensure I take the item to a room that has better lighting. It will get easier to adapt to, and already I am more positive about coping with it, but I am a positive person and have a busy life which keeps me occupied and little time for thinking about the negative points of my disability.

To end on a really positive note, I am very excited and looking forward to my new role as Project Coordinator for Wiltshire Sight. I am working on the 'Looking Out for Sight' project, funded by the Thomas Pocklington Trust, and I am thrilled to have been offered the job. Employment is not easy to achieve when you have a disability and being offered this job gives me an enormous sense of self fulfillment and I am very keen to help people who are in a similar situation to myself. It turns something negative that I'm experiencing into a positive and if I can make a difference to the lives of people living with sight loss, it makes me very happy.