Since my eye issues began back in April 2014, my greatest fear has been that I may one day go blind. I’m sure that some people will dismiss this as hysterical melodrama; however, the hard facts are as follows:
- I’ve lost a considerable amount of vision in my right eye, which cannot now be restored.
- After suffering a retinal detachment in one eye, the risk of it happening in the other eye increases by approximately 12%.
- I have lattice degeneration in my left retina and have already had two large tears repaired.
- I have a cataract in my left eye.
So basically, I have good reasons for my fear and, being a realist, I’m all too aware that it would be foolish to gaze into my future through rose-tinted glasses. This fear of blindness, coupled with the fact that I’m a bit of a worrier [understatement alert!] isn’t the best recipe for a relaxed and peaceful life. It’s sometimes easy to get drawn into things like compiling a mental list of all the things I wouldn’t be able to do if my left eye were to end up as bad as my right. (I won’t even get into that one right now…) I’ve had nightmares about going blind – proper, terrifying dreams which seem so real that when I finally jolt awake I have to switch my bedside light on and check that I can still see as my heart rate gradually returns to normal. “What could I do to lessen this fear of blindness?”, I’ve often wailed to myself.
I decided that it might help if I could actually meet someone who’s severely visually impaired and just chat to them about how they deal with certain things. Perhaps facing the fear in this way would dilute it somewhat, I mused. However, in order to do this, I first needed to find someone who would be happy to talk to me, and secondly I had to face my lesser worry of meeting a Scary New Person. (Yikes!)
An opportunity presented itself out of the blue last week when I spotted a post on a VI group on Facebook. It was someone asking if any members were in the Canterbury area as she’d like to get to know other people who were dealing with sight loss. I bit the bullet and sent her a message, thinking it would probably disappear into that weird ‘other inbox’ Facebook has, and I’d never hear from her. A reply pinged back within minutes, and after messaging back and forth for a while, we arranged to meet up for a cuppa in Canterbury that Sunday. Fortunately, that didn’t give me much time to stress about it, but all the same I worried about potentially saying the wrong thing or coming across as being nosy. (Is genuine curiosity and the desire to educate myself the same as nosiness?) At least there was one thing I didn’t need to worry about: she’d told me that she’d be in dark glasses with a long cane, so I told myself that at least I should be able to spot her easily! This didn’t stop me from honing in anxiously on every person walking with a stick (why, oh why, do they make those metal walking sticks so bright? Whatever happened to the good old-fashioned wooden ones which don’t stand out?!) But I digress…
We met up and immediately I felt more at ease during our debate about which coffee shop to go to, as she observed despairingly, “They’re all really dark, aren’t they?!” I was chuckling about the irony of this, because I have problems in places which are too bright. However, it transpired that so does she! Once we were safely seated in appropriately-lit area and sipping our drinks, we got down to the serious business of exchanging eye stories…
I learnt that she’s registered severely sight impaired and has had sight problems since birth. When I asked what her eye condition is, she burst out laughing, before explaining that it’s so complicated that she often doesn’t know where to start! The main issue seems to be that she has bilateral corectopia, which basically means that both her pupils are in the wrong place. When she removed her dark glasses to show me, and I peered into her eyes, I actually gasped in surprise. Her pupils are tiny, situated high up in her irises instead of in the centre, and their shape is slightly distorted. She explained that they don’t dilate properly (the same as my right pupil since my last surgery), which explains why certain lighting conditions are so tricky. She told me that because of the position of her pupils, she has tunnel vision – i.e. she doesn’t have any peripheral vision. I realised just how bad this must be when I asked what her visual acuity is in each eye and discovered that they’re better than mine in my bad eye. So basically, as she’s registered severely sight impaired, this means that her peripheral vision must be MASSIVELY reduced.
She also explained that her natural lenses are displaced. She keeps getting flashes of light as a result and she’s been warned that she has a high risk of retinal detachment. One of the reasons she was keen to meet up was to learn more about RD, which hopefully I was able to help her out with. It quickly became very apparent that just as I’m terrified of losing any more sight; so is she. I won’t ramble on any further here as this post is already rather long, but I learnt a great deal from our meet-up. It was also a lot of fun – it’s always therapeutic to chat to someone who has a good sense of humour and understands certain perils of eye issues!