Watching and waiting

I’ve always been intellectually curious about people who experience the world a bit differently. I want to know how things looks and feel to them – how their perception may differ from everyone else’s in ways that are almost impossible to explain. Now I find myself explaining my own perception to others.

I have spent the last 20 years watching myself slowly lose my sight. I was diagnosed with retinitis pigmentosa (RP) at age 19 having been deaf all my life, but then I had close to a decade of completely normal sight until the earliest symptoms started to appear. Even then it was not clear, was this RP or was it me imagining it? It is a very hard condition to get your head around, even if you are the one experiencing it. RP creeps up on you, like a thief in the night. It is not immediately obvious that anything is gone.

After years of watching and waiting, my vision nose-dived in my mid-thirties and it is still in free fall. Hopefully the deterioration will level off soon. My peripheral vision has disappeared and it is much harder to see at night. Over time I will lose more sight and nobody can tell me how much or when.

I had a really good innings as a fully sighted person. For many people with RP, their vision loss is already advanced when they are diagnosed. I am thankful for those extra years of scrutinising my vision, as it went from normal to impaired, as it means that I can try to explain the changes to others. I will try to put in this blog the things that I wish I had known in those years of wondering what lay ahead.

Back then knowing that one day I would go blind didn’t feel real. How could my vision that felt so solid and reliable just peel away bit by bit? What would vision loss look like? The web was rudimentary then but even as it evolved and I regularly scanned the net looking for answers I couldn’t find anything that satisfied my need to know what to expect.

Simulation picture of RP

The only pictures of what tunnel vision would look like came from simulation pictures like this one. The idea of a black frame gradually encroaching my sight until it was all dark – terrified me. This people – believe me – is absolutely nothing like it looks. These black ink blot simulations are very misleading but it is incredibly hard to accurately simulate what people with RP see. This blog is my best attempt to describe what going blind from this condition actually looks like.

One thought on “Watching and waiting”

  1. Excellent idea to write this blog and to extend the brilliant information sharing. i write two blogs, one of which is poetry and the other my experiences when visiting our project in India. I find blogging a really good way of getting my own thoughts and experiences straight in my head. I hope your blog will do this for you as well as being so informative for your readers.

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