Exchanged at last

I'm so excited as Mike and I have finally had an exchange of contracts on the house we're buying, this is made even more big as we put the offer on the house back in January and due to one thing or another it's been delayed again and again. Now at last we really know it's happening and we're completing on the 28th May! Woooo!

No eyesight talking today, too much excitement! With all the necessary planning and at some point moving/packing there may not be so much of daily blogs but I'll try to keep blogging as much as possible!

Selective Hearing

Some people say that it's both men and women who suffer from selective hearing. I think due to having a hearing loss I do it a lot more due to it being easier to do than most.

It takes concentration to listen, not because the conversation is boring but because due to being hearing impaired you have to process the sounds into words. Auditory Processing I believe it's called, where you hear the sound, translate the sound and then understand the sound. If you can't hear the sounds all that well in the first place, it makes it that much harder to understand and process.

For instance and this happens all the time to me, I'll hear a sentence but miss a couple of words, but I can guess what the missing words are. You'll use other keys to help understand, lipreading, the vague sound or just the words in the rest of the sentence to help fill in the gaps.

People find it frustrating when you say 'pardon' but then in the middle of repeating yourself, the other person suddenly interrupts and will answer back and you're like, so why did you say pardon then?

Well, I do this frequently, I'll miss a few words and say pardon but in the time that the person is repeating themselves I'm processing what was said and will suddenly put together the sentence and answer them before they've had a chance to finish repeating themselves. It's due to this auditory processing, the length of time it takes for me to hear the sound and getting processed by the brain.

Hence why I sometimes get so tired, all this concentration on listening can take it out of you. So if I'm at this tired state I literally will forget to listen. Sounds strange I know but it's true. Someone will be talking and I will just zone out and I really do believe that it is not because I'm not interested in what they are saying but my brain just gets tired of processing all the sounds into words and will stop listening.

Of course I've used this to my advantage before saying that I just didn't hear something that was said but more often than not it is actually a nuisance to me. Certainly Mike would agree it's a pain as he'll often complain that I've zoned out and stopped listening, or don't listen properly and assume that I've heard something correctly but in fact I haven't. I'll listen to a sentence assume that I heard 'house' when he is actually referring to a 'mouse'. I'll put in the most sensible word into the sentence when actually he is talking about something completely different.

Rather annoying really but something a lot of people suffer from but don't have a name for it. I know it happens to everyone at one point or other but for me it's a daily occurrence.

The Pros of being Deaf

There are definitely more pros to being deaf than blind. All my life I've actually enjoyed being deaf most of the time. If I'm stuck on a bus with a baby crying, off the hearing aids go - bliss. I can't really imagine me without hearing aids, they are a part of me.

So whilst I am sometimes jealous of people with normal hearing, they can be jealous of me. I think back to when I went camping at a festival with my best friend growing up. Partying and talking happens well into the night making it near impossible to sleep with all the noise going on. Not for me however with comments of 'You're so lucky that you're able to do that!' Of course when someone trips over the tent I still wake up to all the vibrations.

To wake up, my alarm clock vibrates instead of beeping. Once I move into the new house I'll also have the doorbell and fire alarm hooked up to the bottom of my pillow. If I'm asleep, despite not being able to hear, I'll still know if something major happens.

Back at school in my really young years I was the envy of my school year due to having a potentially very uncool box that I had to wear. To explain what this box was, my teacher wore one too with a microphone on and mine was the receiver. Good to be able to hear the teacher over the noise of the classroom. I panicked when I was first told to wear it due to it's ugliness but a few days into the school year the teacher forgot to turn the microphone off. I got to hear all that was said in the staffroom which I promptly repeated to everyone. From being unknown I became popular. The teachers cottoned on after a while but the damage was done. Loved it!

Being one of the most popular kids lasted throughout that school, however when I changed to secondary school things changed. I wasn't bullied a lot or anything, in fact I'm not sure thinking back how it happened but I started to hang out with people who were not popular, had other disabilities or just were the studious type. I didn't like school much but I don't think it was down to this, more that I just didn't like hard work!

A great excuse by the way! 'Sorry Sir, I didn't hear you when you set homework', again after a while they cottoned on so that at the end of class they would come to me directly and tell me what the homework would be. Still I used the fact I was deaf a lot to my advantage. I always have believed that to squeeze out every possible advantage is only fair to have the disadvantage of being deaf.

What I can and cannot see

So my vision is a little bit strange, even for Ushers Syndrome. My sister has the classic problem, tunnel vision with the peripheral vision going first. Me? I have doughnut vision.

What does this mean? Well I can see through the middle of the doughnut and around the outside of the doughnut but nothing in the area of the actual doughnut.

Imagine looking at a bush, it's got a bird sitting in it. If I were to look at the bush with part of the doughnut obscuring the bird I won't see it, instead I'll just see more bush, if I move my eyes a fraction suddenly I'll see the bird. It's kind of amazing what the brain can do. A lot of people I speak to who actually have the courage to ask wonder if I just see a black or grey area, it makes sense really, I should be able to see the doughnut right? Wrong.

Instead the brain fills in the doughnut with what it thinks it should be seeing. Back to the bush idea, if I don't see the bird I see more bush, not a big void of nothingness. This I believe is preferable to the alternative of having a black/grey ring obscuring my vision. At least this way I sometimes won't notice I'm not seeing something at all.

This can be the most dangerous part about it. Because sometimes you cannot tell when you are not seeing something, you don't know when to look for something. Am I making sense? Probably not.

If I'm walking along a pavement and there is a black bollard sticking out of the ground and I don't see it, crash and lots of intake of breath with pain exploding. In the daylight and with no glare I can see things to the side of me and things right in front of me, making me believe I'm seeing everything, except I'm not. My daily frustration that really makes the doughnut appear obvious to me is my mouse pointer on the computer monitor. I'll be sending the pointer (and yes, the arrow has been made to be big) round the screen for ages before I see it and yet I think I can see everything on the screen! I can see the desk the screen is sitting on, I can see how many applications are open, basically I can see what everyone else see, except I'm not and I won't realise it until I try to find something. Weird right?

Sometimes of course it is noticeable, take the lipreading, depending what distance I am to someone if I look at their eyes I then can't see their mouth and vice versa. This is incredibly annoying as so much communication is lost this way as I have to lipread to help me hear and understand what is being said but then I may miss the humor in the sentence because I haven't seen the twinkle in their eyes.

Of course in the dark it's a completely different story. When it starts getting dark the normal Usher eyesight problems kick in, that is tunnel vision. If someone comes up to me but to the side of me I won't notice, and of course if I don't hear them too I really could be perceived to be ignoring them - except I'm not! Mostly. This starts to happen as soon as it starts to get dim, with one of the hardest things I have to deal with is pubs and bars. After all it's the norm to have the lights turned down to create the right atmosphere isn't it? As I say, a real pain for me.

How am I coping? In the daylight, pretty well considering. At the moment whenever I'm actually in a potentially dangerous situation, like walking (OK that isn't very dangerous, but it could be for me) I look around a lot. Not just moving the head round but moving my eyes around. This is in practice quite hard to do, at least constantly. As I said before because my brain thinks it's seeing everything, it's saying 'Why are you looking around like crazy? You can see everything'. I probably do look like a complete crazy doing it but hey I think it's stopped me crashing into quite a lot, not completely but it's definitely helped some! As for the dim and dark situations, not so well but that's when I get my fantastically bright mini torch out and cling onto anyone that is with me. Mike has gotten quite used to me holding onto other people's arms as a result! After all needs must.

What do you want to be when you grow up?

Being asked that question when I was growing up my answer would always be ‘I want to be a Mummy’. It still is my one constant wish which one day I hopefully will be fulfilling when the time is right. As a result of this dream at the point of getting diagnosed my first thoughts surprisingly were not ‘How am I going to cope?’ or ‘How long till I go blind?’, instead my questions were ‘Will my children get this?’

An answer thankfully is probably not although now dealing with Ushers for as long as I have done, I now am not so worried about my children getting it as I was at first. It turns out that Mike will have to be a carrier of the gene that causes Ushers Syndrome which is apparently unlikely. At the time of trying to find out all this information there was no test to find out, although I was told that there may be by the time we start trying for a baby. Who knows, but it does raise a lot of questions and tells me a lot about myself. For instance had I found out that Mike was a carrier and we could have a high possibility of having a child with Ushers Syndrome I would have been distraught. Having the guilt of passing on this condition would haunt me and whilst it would not have stopped me trying for a baby I felt at the time I would have had an unhappy pregnancy until I knew whether my child had Ushers. Now whilst I know that the guilt would still be there I also know that it wouldn’t be so bad, after all I’m coping and now I’ve settled down to the fact that I’m actually OK I know that any children of mine would also be able to cope too.

Since then my next answer to the question would have been a plumber. Odd choice but growing up I was a bit of a tom boy and I loved the idea of doing something that was so different. I left school at 18 and went to college to train to be a plumber and qualified. I started working during the college years with a plumber and while mostly I enjoyed it I did not enjoy the early starts, late finishes and all the constant dirt! It was during this time in my life that I found out about Ushers Syndrome and I realised that I had a reason why I could not find the screws I’d dropped and it explained why when we went into lofts and under floorboards I struggled to see what I was doing in those dim sometimes black areas.

So I had a decision to make, I realised my dream of starting a business ‘Fair Lady Plumbing’ aimed at single women and old age pensioners would be impossible. Not only I wouldn’t be able to see to do the plumbing work which so often is fiddly but can be in the worse places imaginable but I wouldn’t be able to drive my purple van that I had planned to own with all my plumbing tools. I kept at it for a while but slowly it got to the point I was struggling daily but I think the hardest part was that I was being constantly reminded of my condition. Every time I couldn’t find something I dropped or needed to see where a leak was in a loft and couldn’t I would be reminded why I couldn’t find it – I was going blind.

So I packed it in and started working at the local Post Office. I enjoyed it to a point, it was great socially as I was in the hub of the village and learnt lots of gossip but I wasn’t very happy. I wasn’t doing what I wanted to do and felt that so much of my life had been wasted.

What came next was an interview for the Paediatric Audiology Department which my Mum introduced me to. Since being found to be deaf I’ve been coming to this department for my yearly checkups and new hearing aids. This turning point has turned out to be my lifeline. I got the job and found that I enjoy it far more than ever working as a plumber. Daily I speak to parents of hearing impaired people like me and even though I may not help them constantly I do know what I’m talking about.

So what do I want to be when I grow up? I’m pretty much there, I’ve got a great job, one that I’ll be able to do well into blindness and as for babies that will be happening one day too, there is a little bit of a rush I suppose in that I want to actually see my children grow up but I’m definitely on the right track!