Thursday, 24 June 2010

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!!

Thursday, 17 June 2010

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!

Monday, 14 June 2010


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!