Losing my sight

I often get asked “What can you see?” It’s a hard question as I forgot what you can see, but my closest comparison would be when you look through binoculars before you put them in focus, when it’s just colours and shapes and no detail.

There are days when it doesnf’t bother me and life just goes by without me really thinking about it. There are other days when things are tough. The difficult thing about having a degenerative condition is that you can’t ever get used to it because each time you get comfortable, it worsens and there is more you can’t see.

The reality of realising there is something I can nolonger see for myself can, at  times, be oppressive. Last week I realised I can’t see my fingernails clearly anymore. Until that moment, I have been able to see them if I move them to just in front of my eyes, but not any more. I have spent the last week peeking at them in every light I can imagine to see if it helps, and sometimes, first thing in the morning before my eyes get at all tired, I can see a bit better. But as I sit here and type, and pause to look at them, they are blurry and like every other similar realisation before it, it hurts.

Previous moments like it are burned in my memory- the first time I couldn’t recognise my husband across the road,  when I could nolonger see printed books, not recognising my best friend stood on the doorstep in front of me, not being able to spot myself in a mirror at an exercise class…….all moments where I could have run for the hills to escape the reality I face. But this new time, of not seeing my own body is gut wrenching. I haven’t been able to see my toes for a while, somehow I feel more indignant about my fingers!

So when these moments come, and come they will, I have choices.  Brushing things under the carpet doesn’t achieve anything,so recognising it, talking about it, writing about it help to acknowledge it as truth. Then it’s time to take a deep breath and work out the practical implications. This time round, it’s time to start getting my nails done, so at least I can look at myself and see somethings colourful, so I’ll get that booked in. I’m also looking in to some computer packages to help me with my work as my eyes have found all the computer work I do hard going, which I struggle to admit but work has been really supportive, as they always have been.

My husband has been great too, in the last couple of weeks alone I’ve fallen, broken a light, not noticed stains on clothing and spoken to staff at work thinking they were students, all frustrating, embarrassing and confidence knocking. Si has hugged me, laughed at me and cooed at the scabs on my knees with the patience of a saint! But then he’s refused to let me wallow in self pity, pushed me to work and sent me texts telling me I can do it!

So the choices I make are to keep going, to spend this half-term week recharging my batteries and reorganising myself so I return to school full of optimism that I can and will be fine. I’m on a mission to get my life organised so I can find things better and keep on top of things more easily, which has been an ongoing project for as long as I can remember… but as my sight worsens, it takes on a new importance and my drive to succeed becomes greater.