I have been asked a lot recently what my vision is like and how I manage to still do my make up so well and read small print. I was diagnosed with Stargardts at the age of 32, so I have the later onset variant with something called foveal sparing (for now) which means that the very centre of my eye is quite clear at the moment. The picture I have posted of my little boy and Loco is the closest I have come up with that shows others and gives them some idea of how I see. This is all dependent on what the lighting is like at the time though and how tired my eyes are. With both eyes open my eyes work well enough together to still be able to drive and just about recognise faces and read without having to magnify. In fact, with my vision, magnifying can make it worse as the bigger the letters the harder they are for me to see as they fall into my blind spots, same with faces. I struggle to read books though as they don’t have a back light, and light is hugely important for me to be able to see better, so I use a kindle for books. If I am sat talking to someone across a dimly lit room though, I may not be able to see their face as the blind patches in my eyes flash all the time and the dim lighting makes my eyes work harder to adjust. The blurred circles in my eyes flash all the time, that never stops and can sometimes be very unsettling and certain light can intensify it and also make my blind spots move about. I see much better in bright sunshine, but if I don’t wear eye protection (which I should anyway) then these circles look like the afterglow of a light for a very long time afterwards.
When I first wake up in the morning after several hours sleep, the first thing I see every single day is what I call ink splats. When I open my eyes the whole centre of my eyes go jet black for a few seconds and looks like an ink splat. When this first started happening, it terrified me, but I have got used to it now but every day on first awakening is a big reminder that I am losing my vision, which sometimes you just have to push to one side and get on with your day else it can eat you up inside.
Quite often people want to know how I hadn’t realised I was losing my vision. I had been to my opticians every two years and nothing had ever been picked up before, so I never thought there was a problem. It was only when my vision had deteriorated enough not to be corrected down further than 20/30, that it was picked up. By then I had circles of blind spots, but the centre was still quite clear, so I just assumed I needed glasses. I can’t see other people’s vision, so to me mine was just normal and my brain had just got used to my blind spots. I just assumed I would be prescribed glasses and all of the distortion and flashing would be corrected. With nothing to compare to and reassurance from regular check-ups from an optician, I was just none the wiser.
Although I can see through the very centre of my eyes, depending on what I am looking at, I still lose parts of others, so the picture shows what I see if I am standing a good couple of metres away, directly looking at Loco. When people move quickly in front of me and quite close, such as on the school run, I find it harder to recognise who they are. The closer I am to someone the smaller the circles become but then parts of people’s faces disappear, so if I am looking at my little boys face up close and stare at his eye then his mouth and some of his hair will disappear. This is the hardest part of this vision loss journey for me, and sometimes when I am talking to Harvey and can’t see parts of his face it literally tears my heart in two as I know that this disease is progressive, and his face is only going to become harder to see as every day passes. I realise that I have had longer to see than a lot of people with Stargardts, but sometimes it still isn’t easier, I really don’t want my world around me to disappear and I’m not naive that it will be harder to adapt to these changes later on in life. For now, all I can do is just take in everything around me and make the most of everything I get to see right now, because even though I have the later onset and the very centre is quite clear for now, I know over time that clear hole I can see through will get smaller and smaller.
I hope this gives others some idea of how I see ♥️.