Canadian Nuns!

I thought it was about time I wrote a little something about the deafness side of Usher Syndrome. So here is a little tale from the deaf side.....!

Years ago, there was a knock at my front door, I opened it and there stood two Nuns..... It sounds like the start of a bad joke doesn't it??

I can assure you that the following really happened, I don't have the imagination required to make up something as surreal!

So... Two Nuns on my doorstop, me holding the door open with my mouth ever so slightly agape!

'We're from Canada!!' One exclaimed.

There was a slight pause and I realised that I was expected to say something,

'That's.... Nice.....!'

I continued to stare at them as they stared back at me. For me it was beginning to feel a tad akward.

See I'm not a religious person, I don't go to Church, I don't pray, I don't believe in God, Jesus, Allah, Heaven or Hell or any of the other stuff religion likes to preach.

I do celebrate Christmas, but for me that's about family, spending time with them, telling bad cracker jokes, eating with them and just enjoying each other... For me, there's no religious aspect to it at all!

As a result, I've never really had ANY interaction with any of the faiths, so to have Nuns on my doorstop really threw me off balance!!

'Erm.... Can I help you at all?'

'Yes!!' Big grins from the pair of them, 'We understand that a deaf person lives here?'

Now my mind felt like it was going to explode!! Nuns on my doorstep who knew that I lived there???!!! How the hell would they know that??? Maybe there was a God and he had told them?? Maybe I'd got this religion malarky all wrong!!

'Err..... Yeah..... That would be me.'

'Oh no,' one of them said, 'you're not deaf.'

'Pardon??' (see what I did there???)

'You're not deaf' she said, I don't think she got the irony of having to repeat what she said! 'You see, we've come over all the way from Canada to help the deaf community in the UK hear the word of the Lord.' Again two massive big grins. 'So could we speak to the deaf person? We've been learning sign language especially!'

By now I was internally feeling a little bit freaked out. It felt a bit sinister. It was dusk. There were two Nuns grinning at me almost manically demanding to speak to a deaf person and not believing it was me!

'Seriously, I'm that deaf person.....' and pointed to my hearing aids.

They looked really puzzled. 'It's just that... We were told that a deaf person lived here'.

'Yes... ME!! And WHO told you this??'

'Oh we can't tell you that.' Big grins.

WTF...... Am I on some kind of religious deaf list??

'So, you're the deaf person?'

'Yes.'

'Can we talk to you, about God and Jesus?'

I didn't want to be rude, after all they'd come all the way from Canada, and learnt sign language, so I just said,'There's not much point really, I don't believe in God, and there isn't much you could say that will change my views.'

Yet another big grin from the two of them.... 'Yes, because you're deaf and can't hear the Lords voice, and we're here to help you.'

I stared at them again..... Feeling a tad annoyed that they would say something like that to me.

And then the normal me came back, it was like I had arisen from the cave and realised what was going on!

'I find that quite an insulting statement to make actually, I'm not non-religious because I can't hear all that well. I'm a non believer because I have the intelligence to make up my own mind, and not be brainwashed into believing something that, which lets be honest, is 99.99% certain to be a myth!'

It was their turn to stare at me with their mouths hanging open. I stared back at them for a few more seconds and then quietly closed the door. Went back into the front room and sat down, 'Who was that?' asked my brother,

'A couple of Nuns' I replied.

I would like to add, that although I personally have no religious beliefs I respect the beliefs of others... I just don't like it when people, or Nuns, try to make me believe!!

Guide Dogs, Part Two.

Like many people, I'd always assumed that Guide Dogs were for those who were or are completely blind. Something I would never think about as I had been told that I would always have some vision!

I couldn't but feel a bit confused when a lady I've befriended on Facebook, with the same Ushers as me and who as far as I knew had some sight, had a Guide Dog!

So I got in touch with her and was basically very nosey! Asking her what field of vision she has, at what point she was entitled to a dog, how she found having a dog, why she had decided to get one etc!!

She was really kind and answered all my questions and told me that in fact there are no criteria for getting a dog, (you have to have a visual impairment obviously!), and that she had found a new lease of life when she first got her dog!

She encouraged me to at least looking into getting a dog, and said it would change my life!!

So I spent the next few days reading the Guide Dog UK website, talking to various friends and family about it and ringing the number to make an appointment but hanging up before it had even rung! As far as I was, and am concerned, this is a MASSIVE decision. It's me saying to myself, 'right Usherchic2, you need some sort of help.' And for me..... Admitting this does NOT come easily!!

Eventually I rang, let the phone ring, let the other end answer and said while shaking like a leaf.......

'Hello, I'm calling about applying for a Guide Dog.......'

An appointment was made for someone to come out and see me, and now the ball was well and truly rolling!!!!!

I asked my brother to come along, for both moral support, and to have someone there to hear the bits I might not hear or just plain forget!

Me, my brother, the lady doing the assessment (Dee), her trainee (Dave) and his guide dog! My brother and I instantly fell in love with the dog, he came in with his big brown eyes, waited for his owner to tell him to sit down and just sat down with a massive sigh, as if to say 'thank god for that!!'

For the next three hours, we talked, about when I was diagnosed, how my life had been effected, why I felt a dog would benefit me, what a guide dog actually does, about my road, how I felt my world had become smaller, and god knows what else. Dave also spoke about his experiences, how having a dog had improved his life.

After all this they told me that I seemed like an ideal person for a dog! (EEEK!!!!!) We made a further appointment to go for a walk, so they can get an idea of the way I walk, and what kind of dog would be most suited to me.

I really like/d both of these people who came into my home and spoke to me about the life changing experience I am about to embark on.

Dee is someone who can chat for England, she obviously REALLY knows her stuff, she's sympathetic and empathises without a hint of patronisation, (I'm not sure if that's actually a word, but you get the gist!).

Dave is a man who it seems can chat for Wales! A huge presence, and bucket loads of dignity. He told me never to lose mine, as it's something no one can ever take away from me. It really struck me and I hope that I will keep hold of those words.

After they left, David and I sat on the settee, had a fag, chatted about all that had been said, and then went to get some chips!!

Guide Dogs, Part One.

I'm getting one. It's a massive step for me, and a sign I think, that I'm finally realising AND accepting that I need extra help..... Those who know me will know what a big thing it is for me to think this about myself.

I'm very independent, and find it really hard to ask for help. Stubborn as well, which again, doesn't help much with the hole 'I can do it myself' attitude.

Loosing your sight takes a massive chunk of the independentness... It sometimes makes you think 'Do you know what..... I'm not going to do such and such, or go to here or there'. Because what should be an enjoyable thing, going to the pub, going to a museum, going to a party, whatever it is..... Can become stressful and totally unenjoyable before you've even got there!!

For instance, just stepping out of my front door to walk down to the train station no more than fives minutes away can be a trail. If it's really sunny, it's hard work. The glare from the sun, even when wearing sunglasses, makes it so everything becomes hazy and glarey. Think of really over exposed photo's, where everything looks really washed out and even ghost like. But add the fact its BRIGHT. The amount of people I've walked into because I've not seen them is countless! It's also embarrassing. People think you're ignorant, rude, stupid..... I'm none of those things!

When it's overcast, it's hard work. Everything becomes duller, you don't necessarily see where the curb is. Curbs and roads are quite similar in colour, and unless you intently stare at the floor, you don't always clock it/them. Stubbed toes, jarred hips and knees can be quite painful. And again, it's something I do all the time!

If it's raining, it's hard work.

If it's drizzling, it's hard work.

If it's snowing, it's hard work.

It's not only the fact that I have really limited vision in the degrees. My eyes take a few minutes to adjust from coming from outside to inside, from inside to outside, from one room to another, even getting onto a train or a bus takes my eyes a few minutes to adjust to the difference to the lighting.

There's also the fact I get bursts of white lights and black spots... You know when someone takes a picture of you with the flash on and you go 'eurgh!!!!!' I get that ALL the time! Not continuously, but it's always there, and there's no rhyme or reason as to when it'll happen either!

It's tiring... It's knackering.... It brings on migranes...

Because my brain is going at 140mph, I'm constantly scanning, the floor, to my sides, up ahead, back to the sides, the floor, the sides, up ahead, the floor and so on and so on and so on and so on and so on and so on.

Plus, I don't hear people coming up behind me. The shock of someone suddenly appearing from nowhere is massive.

Sometimes I feel like I'm on a constant adrenaline rush..... Again, its knackering!

And as I've said before, you can't see my disability, and therefore I look 'normal'. As a result, people don't make allowances for me, don't give me the space I need more than most people.

So sometimes I'll think..... 'I'm not gonna go, I'm gonna sit in and watch a DVD!'

I hate thinking like that. I hate that I might have missed out on something really fun. I hate that people might think I'm a boring fecker. And I hate that one day people might stop asking to things!!

So I'm in the process of getting a Guide Dog. I'll tell you more about that in the next instalment!

Thoughts

When people find out that I have Usher Syndrome, or more importantly realise what Usher Syndrome actually is they more often than not tell me that I'm brave. Or that they couldn't imagine having to deal with it. That they would most likely not be able to carry on. That I'm an inspiration. That I must be incredibly strong. That I'm a special person. And the most odd one.... For me at least, that I must be a 'good' person.

When people say, email, text, facebook, MSN etc these to me, I find myself feeling really uncomfortable. Because I am not any of these things, not really, not especially. I'm actually a fairly ordinary, average person!

I'm not brave, I sometimes still feel like someone has punched me full whack in the tummy and winded me when I think about it. I still think to myself that it's REALLY unfair. Although I wouldn't wish this on my biggest enemy, I wish it was someone else who has it, not me. To me, this isn't brave, it isn't cowardness, but it's certainly not brave either!

I've met a young adult, not quite sixteen years old, who has Ushers Syndrome. She's brave. she puts herself out there, telling people about her Ushers, gives talks in front of numerous people and doesn't falter in getting her view of the world across!

When people say they don't think they could cope, I think to myself 'You would..... Because, well, because you have to!' You find out you've got something, you don't just give up on the world. The world, your world doesn't just fall away. It becomes different yes. But your friends are still there. Your family are still there. Music is still there. The news is still there. Ashes to Ashes is still there. Your favourite meal is still there. Dog poop on the pavement is still there. Day trips to the seaside are still there. Holidays are still there. Death is still there. Your cat is still there.

You see, the world in general doesn't change. It's still there, offering you the mundane, the amazing, the horrors, the highs, the lows, the laughs and all it has to offer. There are days when you think, 'it's crap, it's horrible, I hate it.' You wouldn't be human if you didn't, but more often than not, it's actually pretty bloody good!

Those who think I'm special, or automatically a 'good' person, couldn't be more wrong! My Mum thinks I'm special, but she'd think that regardless, she's biased, she's my Mum, it's allowed! But I'm no more special than the next person. People deal with far worst than I do. Person work far harder than I to try and make the world a better place. In that sense, I'm actually quite a selfish being!

And as for being 'good'..... Well, I was brought up well. I don't intentionally hurt people. I'm polite, I have morals and ethics, I smile at people on the street, I watch the news and feel a slight sense of despair at what goes on. But I don't actively fight a cause for the greater good, I've picked up money on the street and pocketed it, I've thought that someone deserves their rough justice for whatever it is they've done wrong!

So just because I have this condition, it doesn't make me better than the next person.

I'm flawed, simple, complexed, staintly, wrong, right, self aware, self involved, stubborn, passive, assertive and as many other opposits you can think up!

Just like you, and you..... And you, you, you, and you!

Thank you.

Well.... I've not written for a few weeks, and can blame nothing other than my lax behaviour!

There's been a lot going on, and lots of exciting developments, but I'm not going to talk to about them this week, they're to be saved for the next instalment.

This week I want to pay tribute to my friends and family.

I started this as a way of talking about me and my journey through coming to grips with what I have, Ushers Syndrome. The cheapest form of therapy if you will......

Don't get me wrong, it's still all about me! But thinking about what to write, getting feedback from complete strangers and from those closest to me has made me realise that this doesn't effect just me.

Forcing myself to think about how things effect me, in turn forces me to think about how it effects those close to me.

I have an amazing group of very close, very dear friends to me. Your ability to talk absolute crap or to listen to me rant, or whinge or just listen to me be a bit down in the dumps is invaluable. I love that you keep me grounded and still moan at me about whatever's going on in your lives. Or share the exciting things that are going on. To not let what I have define me, to accept that it's a part of who I am, that I am still who I was before I found out about Ushers.

In no particular order, Jayne, Jo, Luke, Claire, Whitney, Mike, Stephan, Nisha, Agi, Elly, thank you for being the best a gal could ask for from friends!

My oldest friend..... Who probably knows me better than I know myself... Sam, thank you for letting me cry on your shoulder, for making me laugh, for getting me inexcusably drunk when I need it most, for letting me bare my deepest darkest thoughts and never judging me and for never letting me feel too sorry for myself!

My family.....My Nana, who will probably never read this, for her undying belief that at some point there will be a cure and for constantly worrying about me walking or being out in the dark!

My Aunt, for all those lunches or general meets for no reason what so ever and who has an unshakable belief that I'm going to fine come what may.

My Uncle, Pete, my fellow drinker in the family :-D who has listened in an amazing way for someone who talks so much! My strongest older male role model. Pete, I don't, and haven't for many years thought of you as my Aunts husband. You're MY Uncle!

And then the two most important people.... My Mum, Trish, and my brother David. I don't think I can ever put into words how much your love and support over the past few years has meant to me. I've kicked out at you two emotionally. I've cried at you two. I've laughed with you two. I've sat in silence with you two. I've leant on you two. You two have listened to me. You two have just been there. I've taken so much more from you two than I've ever given. And you two have never complained, never got narky, never told me to feck off and most importantly have silently been there for me.

David, you're a gentleman, a gentle soul and someone I try to be like most of the time..... Annoying at times, but I guess that's a little brothers duty eh???

Mum, you're the best Mum in the world.... I honestly don't think there is any other way of putting it. You're selfless, kind and beautiful inside and out!

I guess the whole point of this is.... I find it hard to say in person, and I know I do not say thank you.

So, to all of you.......

Thank you.

Humiliation.

I wasn't going to write about this, but have decided I will as I told myself I would be as open and honest about Ushers as I can be.

And now I've decided to write about it I have to do so now so I don't lose the nerve/bottle at a later date!

Yesterday morning I was waiting for a bus to get to work. The sun was really bright and despite having my sunglasses on the glare was glaring in a glary manner! Now, for those who don't have or know about Ushers, sun glare can be a right pain in the jacksie. You know those really over exposed photo's, it's a bit like that. plus my eyes water a lot when it's like that, so I have to contend with the blur that watery eyes give as well.

The bus came, the doors opened and I went to step on.

Before my foot hit the deck someone, a man, barged into me so HE could get on before me.

Because at that precise moment I was on one leg it knocked me sideways. My shoulder hit the side of the bus. I stacked and ended up on the road between the bus and the curb.

The man spun around and started shouting at me!

Apparently I should have been looking where I was going. I was taking the piss. I was making it far worst than it actually was. I was trying to make him look bad. I was a fool. I was f*cking waster. It was all my fault.

He then went and sat down.

The bus driver didn't anything other than look at me.

Behind me a group of teenagers were laughing.

No one asked me if I was ok. No one helped me up. I got up and walked away.....

I have never been so humiliated in my whole life. I have never felt so ashamed to be me. I have never felt quite as vulnerable as I did then.

So much so I didn't tell anyone at work once I got there. I didn't tell any of my family that evening.

No one wants to admit this sort of thing happens to them. But I am going to admit to it, because it takes a fair bit of bottle to do so, and I reckon I got that bottle!!

Buses and trains.

I recently had cause to think and write about trains, it's not as geeky as it sounds.... And I'm not a closet train spotter..... Honest!!

And it got me to thinking about public transport in general. And how much of a pain it can be.

A train journey can be a stressful experience at the best of times for most. Overcrowding, delays, cancelations and last minute platform changes can make the most patient of people lose their rag! Throw into the mix a duel sensory loss such as deaf/blindness and suddenly it’s an absolute minefield!

Announcements over the tannoys can be difficult or impossible to hear, especially when train announcers seemingly specialise in white noise and mumbling!

It can be disconcerting when everyone on the platform suddenly runs, jogs, hops, skips, barges and elbow their way to another platform as if they have received a telepathic message that you have somehow missed out on. The boards show no changes, your train shows no signs of appearing, you know the train you're waiting for is the last one of the night OR the one just before the massive crush of rush hour..... So you make the decision to find someone who might be able to help you!

You stride down the platform looking frantically left and right looking for the man or woman in a blue coat with yellow trim, and they're nowhere to be seen! You reach the barrier and there's no bugger there either! So you end up hanging around, either totally on your tod, or with thousands of people pushing pass you to get to where they want to be. It's stressful..... Sometimes it makes you panic a bit cos you feel like you have no control what so ever. Eventually you find someone and ask what has happened to your train,

‘There was an announcement’ you are told brusquely,

‘Yeah, I didn’t hear it though because –‘ you start, but before you have a chance to finish you're told

‘You should have listened to the announcement, you’ll have to go back to the main station to see when the next train is.’

You try again to explain you didn’t hear the announcement, and that going back to the main station could be very difficult, as you are also blind.... Deaf/blind in fact..... But you're just met with a blank gormless face and a shrug of the shoulders.

Buses are just as bad. You get on, pay your fare, settle down with a book only for the bus to stop two stops later and about 15 stops before yours, with the whole bus filing off!

When you ask what's going on, more often than not you're told the next one will be along in a bit..... And of course you can't get on that one cos everyone bundles in front of you, shoves you out of the way and when you FINALLY get to the door it shuts because not a single other person could possibly squeeze on!