The Beginning

Well it started of course with being deaf and for as long as I can remember I couldn't see in the dark. I used to think it was normal not being able to see in the dark - no one can right? Then I started to think that it was down to my Dad due to him saying he couldn't see very well in dark, ah well that explains that one, must have gotten a bit of night blindness from him.

My first real memory of not being able to see in the dark compared to friends was walking in a small up's and down's area. Hills everywhere which I guess must have been man made thinking back as the area was next to a very large flat common. It was getting dark and being the young thing that I was having an explore and following friends around the place. When we arrived in this up's and down's area I was confused, I couldn't understand how everyone else could see! To my eyes, you could not see where a hill started or dip was next. Incredibly scary but a friend led me around and from the sounds he was pretty surprised that I couldn't see anything but may have been under the impression that I just wanted to hold his hand - I wish! We headed out pretty quick after that but I still wonder had I not have been led it would have been all to easy to have ended up at the bottom of one of those hills.

Getting diagnosed with Ushers was figured out by my sisters optician. She had a normal routine eye examination for her glasses and the optician decided to do an extra test, the field test. Confused the optician asked my sister to really concentrate and did the test again, and then again. A referral was made to a guy who didn't really know much other than she probably had Ushers Syndrome and seeing as I was deaf meant that it was likely I would have it as well.

All my life I thought I was just deaf, it turns out the reason I was deaf though was due to the Ushers Syndrome. We both then had blood tests and signed up for the Ushers Study that was being undertaken at Moorfields Eye Hospital which resulted in more tests than I've ever had to undertake ever before. Again I feel ever so grateful that throughout all this my sister has been going through this at the same time, just sitting in the waiting rooms together being able to share experiences of each test was very reassuring.

And those were the early days! Now it's a case that I can no longer see the stars in the sky and without a guide or torch I'm completely stuck in the dark. Dim places are a real pain. I hate going to unfamiliar places in the evenings as I start to panic before I'm even there just thinking about how not only am I going to struggle to hear things in noisy places I know I won't be able to see people either! Lipreading in the evenings, in dim pubs and bars has become near impossible due to not being able to see clearly.

One of the biggest pains nowadays is the worry that I'm going to let my friends down, I don't want to always be the person who goes 'Can we go to this pub instead, it's lighter'. Birthday celebrations always want to be celebrated somewhere different with it most of the time being a very loud dark place - hell for me. I've started wondering whether I should be attending these types of events due to the fact I end up sitting down in a corner, normally under a light (a very daft thing to do) with no clue why everyone is laughing, obviously a joke I hope! I hate the thought of making the night no fun for others, specially Mike who is incredibly good at making sure I'm ok but will end up not having a good night himself.

Hints for anyone who knows someone with night blindness - if they're eating, light over them is great, they can then see their food, if they're socialising being under a light will blind them (glare combined with the inability for eyes to adjust) so instead put them in a dark spot with everyone else in the light - then it will mean they will be able to see you! So often I get put into a light spot with the person leading me thinking they have done good when in actual fact I'd be much better off with the light shining on the person/s I want to be chatting to.

It's been a while since I was diagnosed and a lot of experiences and thoughts later I'm here now a lot happier than I've been in a long while. There is no cure right now, maybe there won't ever be, but I'm hopeful but not relying on it happening. I take the approach that if it happens it will be a pleasant surprise rather than being ever so disappointed that no cure has been found. I don't read about trials and successes, I trust that if it happens I'll hear about it from my eye specialist at Moorfields and will continue to ignore friends showing me links to new findings trying to cheer me up - false hope doesn't help me but learning to live with Ushers does and I believe I'm succeeding.