Thursday, 25 February 2010

Conversations with a bag!

Firstly, I want to say that although I do read the comments placed at the ends of each blog, I'm not entirely sure how to reply to them! I'm not being rude and ignoring you..... Honest Guv!!

Today I'm going to refer to people as animals, I don't know why, it's something that's tickled my fancy today!

I thought today I would tell the tale of how I ended up having a conversation with a bag.....!

A good friend of mine, Lion, is known for his garden parties, they tend to be on bonfire night, and for his birthday. They're big affairs, big garden, lots of people, food, bonfire, drink and lots of people!

A few years ago he held one of his said garden parties for his birthday, it was the height of summer and so didn't start getting dark until quite late.

I turned up with bottle in hand, made a slight dent in the food table and did some mingling, some laughing, some drinking, and most importantly worked out where I was going to pop myself down once it had got dark!

Anyhoo, I was back at the food table to talking to a friend, Chimp, when she said 'Ooooh, this lasagne is well nice!'

Now those that know me know that sometimes I'm not the most tactful of people, I like to blame this on the fact I don't see so well, or hear so well, and therefore sometimes say things I wouldn't normally say!

'Nice???' I spluttered, 'Badger made it, and she's obviously never heard of seasoning her food, its one of the blandest things I've eaten in ages!!!'

Chimp looked mortified and pointed with her eyebrows and made a oddly contorted face,

'What??' said I, Chimp started jerking her head ever so slightly and I turned around, Badger was stood there and looked really upset.

'Oh....... Badger!' I said, 'I'm really sorry! I didn't realise you were standing there, I'm really sorry, but I just really like strong flavours in my food!'

'That's OK' she simpered and I quickly wandered off elsewhere!

By this time it had started to get dark, I decided that a quick loo visit was in order and so scarpered off to the toilet, came back and plonked myself down on one of the rugs and got chatting to the people around me.

By now, it was dark, there lamps around, and the bonfire was burning away, but for someone with Ushers they're about as much use as a chocolate teapot!

I needed the loo again, 'Bugger.......'

The people sitting around me were people I knew, but not anyone I felt I knew well enough to say 'Will you take me to the toilet please?' It's not the sort of thing you want to say to random people, it makes you feel like a pleb!

Sod it I thought, I'll go by myself, what's the worst that can happen.....??? Well, lots of things can happen but you block that sort of thing from your mind!!

So I stood up and gathered my coat and bag with me, as I knew there'd be NO WAY I'd find my way back to them! and headed off towards the house.

As I got away from the general throng of people I stepped on what I thought was someone's foot.

'Oh sorry mate, didn't see you down there!' I looked and saw a foot, a leg and the body shape of a person, 'are you having a good time??'

No response....

'Bit rude!' I muttered to myself, and then 'Excuse me, did you hear me, I asked if you're having a good night??'

Again, no response..... I bent down to poke them and to make sure they were OK,

'Hey, are you alright mate?' and shook the leg......

The leg was a pile of coats, the foot was a bag, the body was a bush!

'For f*cks sake!!!!' I stood up, hoped no one had seen me or heard me trying to have a conversation with a bag and some coats and high tailed it into the house!

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.....

Thursday, 11 February 2010

I headbutted a man in bed.....

Today I thought I would tell a story that I haven't yet told anyone. Partly because it makes me cringe massively when I think about it, and partly because it's difficult to tell a story where you've physically harmed someone else and not snigger without coming across as a bit of a nasty piece of work!

So, I had been dating this man for a few weeks, we'll call him Mr. Numbers, he worked in the City in something to do with numbers. I'll be honest, whenever he spoke of his work after a few minutes 'selective' deafness came into play and I didn't pay any attention!

Mr. Numbers, apart from having a very dull sounding job was a very nice gent indeed, funny, articulate, well mannered, intelligent and easy on the eye! We had been out for a few drinks in London Bridge and gone on for a meal just off of Covent Garden (it's an amazing place, it looks and feels like the sort of place where Russian gangsters might hang out..... But that's another story!).

It had been a really nice evening, nothing amazing happened, but sometimes those are the best nights out I find.

We came back to mine, watched some T.V, and had a nightcap, and went to bed.

Because this isn't THAT type of blog the next bit is CENSORED.

So, we fell asleep, and I have to say usually once I'm asleep noise doesn't wake me, movements and vibrations from noise wakes me. So to all you snorers out there, know this, just because you are in bed with a deaf person, does not mean they wont be disturbed by your nocturnal rasps! I would say we are more disturbed because it's not just a sound..... It's the whole bed gently shaking!

Anyway, as I was saying, I had fallen asleep and at this point I wasn't used to sharing my bed again.

When you can't see in the dark, or hear because your aids are on the bedside table, your other senses kick in, you can just 'feel' when something doesn't seem quite right.

I woke up suddenly and could 'feel' something leaning over me, I sat bolt upright and


'F!ck! F!cking f!ck!!!!' Mr. Numbers yelled, loud enough for me to hear exactly what he was yelling!

I scrambled for the lamp, turned it on quickly, stuck my hearing aids in my ears, turned around and saw Mr. Numbers clutching his nose with blood dripping out from through his fingers.

The first words to exit my mouth, not 'I'm sorry!' not 'oh my god! Are you ok??' but

'My sheets!!!' I did instantly change my tact, and rush to the bathroom and get him tissues, some neurofen, gave him lots of sympathy and didn't mention my sheets again, at all, not once..... Although I was thinking about them!

Turned out he had leant over to get a drink of water from my bedside table and instead had got a bloody nose!

He was very understanding about it, far more so than I would have been if the situation had been reversed I'm sure! We did carry on dating for a few more months, but it just fizzled out in the end, that's what I tell myself anyway, nothing to do with the ABH I inflicted on him!

Moral of the story, if you're dating a deaf/blind person, make sure you have water on your side of the bed!

It's a short one this week folks, I've been busy and in a good mood and not wanting to think too much about the depressing times!

Wednesday, 3 February 2010

How I would describe Usher Syndrome.

Firstly, I'd just like to say, I'm totally and utterly gobsmacked at the response to this blog so far! To have total strangers say that it's good implies that it might well be worth carrying on! (People I know have said it too, but you always wonder if they're just being kind!)

Secondly, big thanks to my two spelling nazi's! You know who you are, and although there were just TWO mistakes I'm so glad you pointed them out!

So, I've told you the tale of how I got diagnosed with Usher Syndrome, and thought before I carry on with the next part of the story I should tell people what it actually is.

I'm going to focus on Usher Syndrome Type 2, because thats what it is that I have, and I am talking about me..... Me, me, me, me, me, me, ME!

There are two ways of explaining what Ushers is, there's the medical way, and then there's my way. I'll start off with the medical way... Well, I'll cut and paste the description from the Sense website!

Usher syndrome Type 2
People with Usher 2 are born with a partial hearing loss and then develop a visual impairment called Retinitis Pigmentosa (RP) in their teens. This may not be diagnosed until their early twenties or even much later.

What does this mean?

People are born with a moderate to severe hearing loss which often remains stable throughout their life and is generally helped by hearing aids. Problems with vision are first noticed at night followed by increasing difficulty with side or peripheral vision. At times this may lead to bumping into or falling over people and objects. People may notice difficulty moving into bright light from a darker place or vice versa. However, they may have adapted to these changes already, particularly in familiar situations.

What does the future hold?

In most cases people retain good reading vision well into middle age. There is no treatment available for Usher at the moment. Research is taking place in a number of universities in Europe and the USA, which is looking into the types of Usher, the genes that are involved and what messages the genes are passing to the cells. However, much can be done to help people make the best use of their vision and hearing.


Most people with Usher type 2 will be born with a partial hearing loss and so will probably use speech and lipreading in addition to a hearing aid to communicate. In many cases, attending mainstream school means that they are likely to feel part of the hearing rather than the deaf world.

So there you go, the rather glib, and unemotional description of Usher Syndrome, and to be honest, the kind of reply I usually give to people when they ask me about it and what it is. It's easier than getting all deep and sometimes a little teary in the middle of a pub!

Now here's my way of explaining what it is.....

It's a pain in the arse and I hate it...........!

Hate it, hate it, hate it!!!

There are, as far as I can see (that was an intentional pun by the way!), no sodding benefits to it at all! Not like there are with the deafness, if I fancy some time out from the world I take my hearing aids out and can have a whole day with no interruptions. I wont hear the front door, I wont hear the phone, I wont hear the sound of police cars screaming past my house, I wont hear the kids in the garden down below. It's just peace and quiet! And as soon as I want back in the normal world, in go the aids and I'm back!

I HATE being partially sighted.

I HATE not seeing in the dark.

I HATE not seeing things just outside my field of vision, when my field of vision is so bloody narrow.

And I HATE the fact it's an 'invisible' disability, so that people who don't know me or just don't know about the Ushers think I'm thick as two short planks! People are in general far more sympathetic to things they can see..... A wheelchair, a long white stick, walking sticks.....

But when they can't see why someone walks slap bang into a low wall, or when they ask 'How are you?' the reply they get is 'No thanks I just had a cuppa' the assumption, more often than not, is 'Hmmm..... Bit simple that one!'

It does make me an interesting and slightly eccentric person to know apparently, as conversations can go off on random tangents, walks can suddenly become far more dramatic as I fall down rabbit holes and twist an ankle!

I've found since the diagnosis, that I'm actually far more aware of the things I don't see. You learn, fast, to know your way around places, your home, your road, your families home, your friends homes, the places you go to often. You even learn to remember when there's a mess, so that when you wake up in the middle of the night to go to the loo you can get there without turning on lights, and without falling over the shoes you just threw off because you couldn't be bothered to put them away properly.

It irritates me no end when things aren't as they should be, or rather how I remembered them to be. Coming home late the night before bin day is really really really annoying! I know where every branch sticks out, I know where every paving slab is a little uneven..... Tuesday evenings when it's got dark and walking down my road its CRASH, walked into a wheelie bin, two seconds later WALLOP, walked into another wheelie bin, two seconds later SMACK, another fecking wheelie bin, and so on and so on and so on!

My legs are constantly bruised, my knuckles usually have some kind of graze or mark, and my pride and dignity is often really dented!

It's a totally and utterly pointless and dare I say it cruel thing to have, the sight thing far more than the hearing thing. I think, in fact I'm pretty certain I would do ANYTHING not to have it.

That's all for now folks,I feel I've rambled enough for one day and next week I shall carry on with the 'story'!