Thursday, 18 February 2010

The confirmation

I had been diagnosed with Ushers at my local hospital, and was now waiting an appointment at a specialist eye hospital. This was so they could confirm that I do indeed have Ushers and to become a part of the 'system', and so that I can have my check ups and keep an eye on the progress the Ushers makes in fecking my eyes up even more!

There wasn't that long a wait for the specialist appointment, but it felt like forever. After the initial diagnosis, I did a bad bad bad bad thing! I googled it.....! I Youtubed it........! I Wikipedia'd it........! Strong word of advice, if you ever find you're in the situation where you've been told you have something you've never heard of, DO NOT do what I did, I can assure you that only the worst cases will come up.

The ones that tell you you will be blind within days, that there is no cure, that life as you know it will never be the same, that you will become a useless, unhelpful member of society, that you'll become a burden, not only on your family but on your friends, your work place, the transport system yadda yadda yadda!

So armed with this information, I had a pretty bleak outlook on what my future was going to be.

I didn't go back to work, it was a job where the contract ran out a few months later and I just thought, 'Sod it, I'm going to go blind!'

I took a real sadistic pleasure in the reaction from people when I told them.

The looks of shock on peoples faces when they asked 'How's things?' and my reply was 'I've been told I'm going to go blind!' was priceless..... It was also really cruel of me, and to those that got the brunt of that, I'm sorry.

I also pushed people away, and wouldn't let them be a friend, be a Mum, be a Nana, a brother, an Aunt, an Uncle. I didn't want to think about it, and I didn't want to see the impact it also had on those who care about me.

People would tell me about people they knew of who had Ushers, and I would think 'I don't f*cking care!'

They would tell me about something they'd read about medical research, and again, I would think 'I don't f*cking care!'

I hated that people felt sorry for me, I hated that people were trying to help me and I hated that suddenly Ushers was me.

For a few days after the diagnosis I had a vague and totally irrational sense of resentment towards my Mum. If she hadn't made me go to the Doctors, I wouldn't have gone to the spec's shop, I then wouldn't have gone hospital where I was told I had this sh*tty, b*llocksy thing! If you don't know you've got something, then you haven't actually got it..... Right???

I only felt that for a few days though, and as I said, it was a totally irrational thought, and even when I was thinking it, there was another part of me that thought, 'You're being a tool!!!!!'

Anyway, the appointment at the specialist eye hospital cam around, I went with my Mum, and the letter that informed me I shouldn't operate heavy machinery for the rest of the day. I had a full day of eye tests. Staring straight ahead in a dark box frantically looking for the pinpoints of light in a desperate attempt to make the results better. Having drops put in my eyes to make the iris' open wide so they could get a proper look at the 'hooks' and 'cones' at the back of my eyes. Walking from one room to another to do this and that.

And then going home, clutching my Mum's arm so as not to fall over from the blurred vision, and berating internally the fact I hadn't brought any sunnies with me. When your iris' are so wide open the glare from light is a horrible pain.

A week or two later we went back to get the results, I had yet more drops put in my eyes and then went through to meet Mr. Eye Man.

He said that I do indeed have Ushers, and went on to explain that fully sighted people have 180degrees of vision, I had 10degrees.

He asked about family history and my Mum said that her Grannie had had sight problems, but that it was thought this was due to diabeties, Mr. Eye Man said that it was highly probable that Grannie had had Ushers/RP as this is a genetic disorder.

He said there was no way of telling how slowly or quickly my sight would deteriate, it could be as little as five years or as long as 20 years.

He said that there was no cure for this now, but there was research going on..... But that any research that might benefit me, probably wouldn't be available for another 30-40 years.

He asked if I drove, when I said no, he said 'That's good, I suggest you don't learn. Not only will you be a danger to yourself, you'll be a danger to others.' Up until that point, I'd had no desire to learn, but of course, now I was being told I can't/shouldn't it's the ONE thing I'd love to be able to do!

My Mum at that point then piped up with 'What about cycling???'

'Ooooh no, I wouldn't do that either!' You git I thought!

He also told me that I would never completely lose my sight! I would always be able to read a book! At that moment I could have leapt across and snogged him then and there!

Other stuff was said, but that's the stuff I remember, the important stuff.

Mum and I left and went to have some cake and tea.....


  1. Hugs, Lady. Your spelling and punctuation is improving!!

    xxx from Sgt Slingsby

  2. you should snogged him ;)

    ps we are going cycling in august