I’ve put off writing this particular post for some time if I’m honest. I guess out of the whole part of my transplant journey this period was the most difficult because my life really changed. I had gone through the first day and then the diagnosis (make sure you read them before continuing if you’re new to my blog), but actually living day to day was one of the hardest things I’ve ever had to do. I’ve never spoken to anyone about this before but I want to share this with you. I hope by the end of this if you are not currently donating your corneas you seriously think about it because I hate to say this: it could be you in my shoes one day.
By this stage as you’ll know my left eye was useless and everything was literally a blur. My right eye had the condition – at that time not as severe – but it was heavily infected and under a lot of strain. I was literally living in a blur and nothing could be done. Have you ever woken up in the morning, looked around your room and not been able to make out a single object? Have you ever picked up a book and not been able to read a single word? Have you ever walked down a street and not been able to read a single shop sign?
I remember opening cupboards and just seeing a wash of colour before me. There were certain colours I could recognise – say a tin of Heinz Baked Beans – but other than that I found it really difficult to pick out the items I wanted. My mum did all of the cooking for me because I was literally a danger to myself (and others) being let loose in the kitchen! This might sound dramatic but imagine living in a constant blur and not being able to focus on anything. I’ve now learned how much I took for granted.
I remember the day I got large cardboard boxes and threw every single book, ornament and photo into them. I did this for two reasons: 1. They were no bloody use to me! I couldn’t appreciate them in the slightest and 2. It just cut down the amount of blurred colours that surrounded me. The less that I had around me, the better I felt. I cried at the time but I felt a sense of relief too because I didn’t have these items around me anymore. The boxes were then placed on top of my wardrobe and I never thought about for a long time.
Stairs were a nightmare for me and still freak me out a little bit if I’m brutally honest. I know that seems silly but I just hate stairs! I couldn’t tell one stair from the next and I’ve lost count at the amount of times I fell down the stairs, haha. I can laugh about it now but it wasn’t that funny at the time! I learned how to use banisters more effectively (holding my arm further down the banister and kind of using it as my guide) but every time I faced a flight of stairs I got this knot in my stomach and my heart would start racing because I was so scared I would fall.
I was given a symbol cane which I was told to use to let others know that I had a visual impairment. I hated that bloody cane. To be honest, I didn’t use it that much because I didn’t want to draw attention to myself or be known as ‘the blind girl’ because I wasn’t blind and I wasn’t going to admit defeat. When I used it, people did give me space which helped (gave me a seat on the bus which was a relief) but there were some that tried to help me too much. I remember I was standing at the traffic lights once (not that I could see the green man) and this gentleman grabbed my arm and pulled me across the road! Looking back, I know he did it out of kindness but at that time, I felt like I had hit the lowest point I possibly could. I thanked him and I stopped using my cane soon after that. (Oh there are kind of like little ‘thimbles’ underneath most traffic light buttons that you can hold and when they spin, you know it’s safe to cross).
That is what really got on my nerves: the amount of people that wanted to help me. Everyone wanted to help out and everyone seemed to know what was best for me (even though they had no idea what it was like). I’m not a horrible person (I hope, haha) but I was a bitch back then. I didn’t want to be a charity case and it was difficult finding that fine line between helping me, and taking over.
I had friends that were great and really understanding. They would help me read menus/the specials board and help me down stairs or pick me up and take me for a drive somewhere. I really appreciated those times but it was insanely difficult for me because there were some things that I just couldn’t do anymore; going to gigs was beyond difficult because more people = more blurriness. Stand up comedy went down well because I could appreciate it but not seeing facial expressions on anyone broke my heart constantly.
I don’t know if any of my friends will read this (and if they do, I know they’ll have something to say to me about it!) but I did something they would be so annoyed about. One of the most difficult things for me was finding the toilets in public places (and making sure I went into the FEMALE toilets!). I bet that is something that you take for granted but please think about it the next time you go out with your friends and casually stroll off to the loo without a care in the world. I couldn’t see where the toilets were in any place I went to or distinguish between which was male or female. If my friends went and I had to go that was great but if they didn’t then well…I wouldn’t ask. There were so many times I would sit there and be literally bursting and I didn’t say a word. It might sound silly (perhaps it is) but I didn’t want to be the ‘visually impaired girl’ and depend on people. So yeah…that was fun!
And every single day, I begged for a donor. How weird does that make me hoping that someone dies??!! Obviously, it wasn’t like that but I just wanted my life back because for me, it wasn’t just my vision that was taken from me: it was a large part of me that was fading away.. There’s still a lot more to share about my life on the transplant waiting list but I really hope this has opened your eyes about how important it is to donate your corneas. Wouldn’t you have wanted someone to help you if you were in my shoes?
As always, thanks so much for reading and following my transplant journey! If you had any questions or comments, please feel free to leave them below or you can tweet me @thingsarahloves.