Recently I bumped into (no, not literally, thank you, yes very funny) someone who I haven’t seen in a while (again, yes, hilarious). Not a close friend or even someone I’d say I know particularly well but, nonetheless I was pleased to see them (stop it now). After the preliminary “how are you” enquiries he asked, with no apparent discomfort, “So, how are your eyes?”
I could feel the awkwardness creep through the rest of the room and, honestly, I was also taken aback for a moment but, in my case anyway, pleasantly so. I thought this was a lovely, kind and thoughtful thing to ask and something I don’t get asked very often. I know my parents get asked this from time to time when they meet up with people they knew around the time I was diagnosed with RP, “How are Michelle’s eyes?” But I can’t think of many times in my adult life that I have been directly asked how my vision is, whether it’s the same as it was a few years ago and how things have changed.
So I thought, with my first blog post for the year, I’d answer that question. You know, just in case you’ve been wondering but not felt able to ask.
So, how are my eyes?
Print (Reading and Writing)
For me, how I’m interacting with printed text (both reading it and writing it) has been an indicator of my sight degenerating over the years. I read my last full book in 2009 but still used a magnifying glass to read short items of text. This meant I could still read labels, price-tags, till-slips, board game cards (like 30 seconds) and recipes. But about four years ago my eyes became too weak to use the magnifier. This pretty much signaled the end of my ability to read hardcopy printed text.
Not surprisingly, I found this a bit overwhelming and I had to adapt almost overnight to all the little frustrations of not being able to read. Not being able to read books anymore was not a major source of sorrow for me, in fact, deciding to stop putting my eyes, neck and back under the pressure of reading was a relief. Audio books and computer software filled the gap for me easily and I trundled along just fine. But, losing the ability to read the little things was incredibly annoying! Having to ask someone to check the labels on my two types of moisturizer and then make sure to keep them stored in a particular way so that I don’t get them mixed up is annoying! There are a hundred little examples like this.
What I did realize recently though is that I don’t think I actually told many people that this was going on. The sight of me with my magnifier (often much sell-o-taped from its various collisions with the floor) in its little leather pouch was a familiar one to friends and family and some people did ask me why it was no longer making a regular appearance. But I never made a general announcement that it wasn’t working for me anymore. So this is the rather delayed announcement – magnifier days are over, Sherlock has left the building.
I stopped writing somewhere between 2010 and 2011. For a while before that I was having to write with a thick black permanent marker and this was just getting ridiculous. I didn’t miss it much although it does sometimes strike me as odd that I don’t write. For a brief time, when I was working, I had access to a large screen magnifier in my office. This was great for writing, especially signing documents, filling in forms etc. For the first time in years I was keeping a hand written to-do-list and enjoying the satisfaction of vigorously crossing things off it. I considered asking to buy it off the organisation when I left but it really was a bulky dinosaur and I would never have found a convenient place for it. Besides, again, tech fills the gap nicely.
Speaking of tech. Last year, for the first time, I began to use, what I call, and a completely non-visual computer. That is, I use a MAC with voice-over which means I’m not interacting visually with the screen at all. I was quite nervous about taking this step but it’s actually been mostly pretty easy and great for my eyes not to have to squint and strain anymore. I do still sometimes use magnification software (on the desktop computer I use at Uni) but I rely heavily on the additional text-to-speech software as the magnification is so high that I can only see a few words on the screen at a time.
As I’ve mentioned here before, I’m not a huge techy person but I do love my phone and my laptop and can get along with most tasks using a combination of the two.
Seriously, I cannot believe I used to walk around UCT campus without any assistance. I really don’t know how I did it. I alluded to this in my previous post about freedom of movement, the fact that I don’t get around as easily as I used to. Part of me wonders how much of this has to do with my letting go of the fierce resistance to mobility aids and beginning to rely more on them and less on my “sighted performance” coping strategies. This was certainly part of my reluctance to use mobility aids in the first place, that they would somehow rob me of my sight. I don’t know, maybe they have in a way. But, as I walk around campus with Panda the dog, I remember the stress and anxiety of negotiating the stairs and the obstacles and the people alone. All in all, this is preferable.
I think my field of vision has significantly narrowed over the past five years or so. Even in my own home I think I do a fair bit more bashing into things than I used to. I also get very fuzzy vision from time to time. This is like a film which comes over my eyes, similar to looking through a dirty window. I’ve had the privilege of getting to know someone who is thirty years my senior with the exact genetic strain of RP as I have and he has been very open to chat with me about what he can see. He told me that when he was around my age his eyes behaved similarly. He described it as an old-fashioned television losing signal slightly, the picture becoming a bit wibbly and then snapping back to again.
This sounds more distressing than I actually find it. If anything, I find these moments (reasonably frequent as they are) irritating, like I want to wipe the lenses of glasses I’m not actually wearing.
So, that’s the update.
Also, a quick thank you to everyone who reads these posts, sends nice comments and shares them. I really do hope that they are helpful, encouraging and entertaining. When I started writing them I didn’t imagine many people would take the time to read them so thanks for sticking around.