So, it’s happened, my one-year vision loss anniversary has finally come around. It was a weird day, obviously the same as the other days before it, but full of upsetting memories. I remember how petrified I was the day my husband drove us to London to Moorfields eye hospital. waiting in the room disorientated by the drops they put in that make everything completely blurry and send you into an anxious panicked state that those drops simulate your future. The cameras flashing in your eyes and being asked to look at writing and numbers to find out what you can still see. Then after you sit in front of a screen and view the damage on a big screen of the inside of your eye. Then you are sent on your way to face your sightless future by yourself. The whole process is utterly heart breaking and depressing and I couldn’t help but remember it all with a heavy heart.
The thing with this date is that as years go by, unfortunately my vision will only deteriorate. I will never have a date to replace this one of when my Stargardts got better, or when my eyes were fixed, and I can celebrate that. This day will always signify a loss and every time it comes around again, that loss will have grown. Time is usually a healer, but not for this, time takes more and more away.
The truth is, I started this blog as I’m not really sure how to cope with this whole vision loss thing. I haven’t actually cried about it for a long time now, but I still think about it every day, and I guess some hours are consumed by it still. Some people say to me, you have coped so well over this last year, I don’t know how you have done it. Although I appreciate the comments, what else am I meant to do? I still have this life and I’m trying to make it my best one whatever that means. I’m trying not to let vision loss take anything else away from me, it’s the only life I have. I also want my little boy to know, that whatever life throws at you, you will be ok, and you will get through it. He has seen me at my absolute lowest when first diagnosed and I never thought I could be a normal mum again, I never thought the sadness that consumed me would lift, but as the year went on, life did become normal again, our routine continued, and it went on. Sometimes things don’t go to plan and that’s ok, we just have to make a new one and carry on.
By the time my second vision loss anniversary comes around, I honestly don’t know what I will see, or if I have lost any more of my sight. Sometimes that’s the hardest part of this journey, that nobody can tell you and you get lost in thought of what you may miss in the future. All I can hope is that whatever does happen, I don’t lose me and I will carry on trying to raise much needed awareness and give hope to others, that although at the time of diagnosis life feels over, it isn’t at all, you are just on a different path to a new one and I promise you will be ok , you just have to keep going 💙.