Today is World Sight Day, and I’m okay.
Last year, I did a piece about me and my sight condition, and the things I struggle with. But not much has changed. The only things have been the night vision that has steadily got worse, and how people’s faces are becoming harder to make out. Other than that, its pretty much the same.
I’ve lived with mental health conditions sine 2012. And this sight loss journey has increased these feelings, and I’ve struggled with it. I still do sometimes, especially when out and about with cyclists and e-scooters, or when navigating home in the dark, or finding new places, with reading menus or heading into Moorfields each time.
But this year, I feel a lot better about it. Sure, it still frightens me sometimes. But I’ve come to terms with it.
Getting that final diagnosis in January definitely helped. It finally had a reason; it wasn’t my fault. It was made of some faulty gene, and I wasn’t an enigma to science anymore. There were even people like me, in this macular dystrophy world, and it didn’t feel so overwhelming. Sure it didn’t change anything physically. But it helped, mentally. I became more confident introducing myself to new colleagues, for saying what I needed and wanted, knowing I could be fairly certain. Sure, I always worry they will change their mind. But it seems fairly settled, signed by the top professionals, and confirmed when I went to Moorfields last Monday. And it was a relief, to not be an enigma to science anymore, to be heard and seen and known after a good three years of feeling like I didn’t exist, or was worth helping.
I also found an article about a woman who had Visual Snow, which I think I have too, as all the symptoms matched to the letter. Sure it wasn’t an official diagnosis. But it made me feel validated, that I wasn’t the only one experiencing these weird flashes and floaters and speckled dots, that it wasn’t all in my head, that I was okay after all.
And maybe it is both, or none at all. I’ve recently come to the realisation that it doesn’t matter. There are some things we can’t name, and perhaps we force them into one, when perhaps they should just be. I’ve tried this new approach towards my sight and its been an incredibly freeing feeling, no more blame or judgement, just accepting that its a part of me and I’m a part of it, and I’ve been feeling less anxious about it since.
I also bought a signal cane, with a light attached to it, for walking home in the dark. I suppose I finally accepted to the world that I can’t see very well, after smashing into a tree one night on the way home from wind band. It really helps, and I’ve noticed people asking if I need help in my area at night when they’ve seen me with it. I suppose I feel more confident asking for help and admitting when I can’t do things. This is a work in progress, but its better than last year.
I’ve been more open about it, talking with friends about what I face. I’ve put it into my writing and am currently creating a novella style project about my wild ride through sight loss. I’ve put it into several flash fictions and shorter pieces and am having two of these published soon. I’ve had one poem about it published recently, which the editor said was wonderful and empowering. And I don’t mind flying the flag for partially sighted writers like me.
I suppose my sight doesn’t bother me so much as it did. Everything seems settled, both with the sight loss and also with work and home life. I’m happy in myself, and life is good. Sure, I do still struggle mentally sometimes. But not as much as before. I’m not sure what the next year will bring for me and my sight. But I don’t mind it quite so much.
