On meeting milestones in progressive sight loss

Posted in Sandi's blog on 12 January 2010 | 0 Comments

Over the past few weeks or so, I realise that I have reached some new sight loss milestones, and I use the word 'realise' on purpose, because when I have a new symptom or some aspect of my vision degenerates to the point where I can no longer do something I used to be able to do, it is like a slow dawning rather than just waking up one day and saying "Alrighty. That’s a goner", and then ticking some sort of box on your list of milestones.

All of this has only occurred to me retrospectively, as I have reached two fairly major milestones due to the thinning of my retina - the first being that every time I go outside or anywhere that has bright lights, it feels as though someone has just stuck two flashlights directly into both eyes as I walk along. Quite painful and makes the world look like one big shiny ball. The second being the fact that I now have permanent double vision, which does drive me batty, but I still won’t sport the pirate patch I got at Moorfields, as double vision in both eyes is a better option than single vision in one.

When I told Mark that I had reached these milestones and it had been going on for a little while, he was confused and upset and wondered why I hadn’t told him earlier. Well, it goes something like this; When the symptom first rears its ugly head, it is a bit shy and doesn’t come out to play every day, so I am not sure whether it is permanent or whether it is fleeting or incidental, so I have to wait. And gradually, it weaves its way in and becomes a permanent feature and after a few weeks of this, I can then officially call it a milestone. And this is not actually a conscious process. It just sort of happens, thus the realisation.

Apart from wanting to explain this process so that it may provide some insight about progressive sight loss, I am also quite pleased to say that the theory I boldly put out there, untested, that grieving for my loss of vision wholesale when I registered blind would result in quicker and easier returns to the grieving process upon meeting milestones, is now proven. I felt sad and I reflected, but it was calm and measured, it came and went with grace and the bottom of my world remained intact.

0 comments | Tags: RP, Grieving