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Tuesday, 21 July 2015 07:15

C'est la Vie

On February 24th 2004 aged 22, my life changed dramatically in one day.  I went from being fully independent living life,  being care free, I had a vague  plan as I had purchased my first house 18 months ago and having my own little car (which I absolutely adored).

I was told on this very snowy day that I had Usher Syndrome and that I had to give up my driving licence as I was unsafe to drive.

Everything crashed to a halt,  my eyes went wide and all I could think was.....that's it...... I've l lost everything! My life is over.  How am I going to get to work?  How am I going to pay my mortgage, if I can't keep my job because I can't drive? My boyfriend won't want to stay with me.....

It all kept going round and round as I sat there with the consultant, my mum (who had driven through thick heavy snow, as we white knuckled our way to the hospital) and my twin brother who was also diagnosed alongside me and we were both registered partially sighted. 

We left the hospital and I was completely stunned. I got into my mum's car and said I'll have to phone work, I can't go in tomorrow, till I figure this out.   I can't even drive home from my nans where I'd left my car even though I was perfectly road legal still, as I hadn't sent my licence back. I just couldn't take the risk knowing I wasn't safe. What if I knocked someone over? 

Several days and phone calls later I am back in work, trying to carry on as best I can, absorbing the changes I had to adjust to overnight like living in a very rural area, no car and no regular buses never mind the fact I was already hard of hearing and now I'm going blind! Totally feeling like a kicked puppy.

I can remember trawling the internet looking for everything to do with Usher and what my future held.   There really wasn't much out there at all.  It all felt hopeless and very frightening. 

I did find a very dear friend who also has Usher on an RP forum.  He helped me so, so much in those early days by telling me what he had already gone through and what I might face.   

He really was my saviour as having someone to talk to and share my fears helped me stay on track and not give up.   He still does that for me today.  I am very grateful to him. :)

I went down the disability road and contacted social services at my local authorities and registered partially sighted with them. I received a symbol cane (short white cane with red bands) eeeeek you expect me to go out carrying this!  No way.....I'm not doing it!  (Folds arms and sticks nose in the air) Hmmph! I am not blind! 

I only used the cane when I was in a really busy environment and all i can say is, it was about as helpful as a chocolate tea cup. Seriously people didn't see it or even know what it was. 

I just got on with my life as best I could with the support of my family,  my friends and Access to Work for the next 10 years.  I got married (the boyfriend stuck by me :-)) and gave birth to 2 gorgeous boys. My disability invisible unless I told you. 

In 2014, I really started to struggle in work, moving around. I was constantly bumping and tripping over things all the time.   It got so bad I started to suffer with anxiety I really didn't want to go to work anymore. I just wanted to give up. 

It finally came to a head when I knocked a little girl (approx 2 or 3 years of age) over in the shop.  Gee whizz! she screamed and sobbed the planet, the guilt I felt, I can not describe. I apologised profusely to her mum and went on my way desperately ashamed and trying to hold my tears back. I went straight to the checkout and bought a chocolate egg, went back to find the mum and little girl.  I gave the girl the egg and said i was so,  so sorry, the mum thanked me and I left. 

As soon as I was alone and safe I broke down. Having 2 small boys of my own, they have also suffered being knocked over by me in the home.  However,  doing it to someone else's child made me realise I couldn't carry on like this.

I made a phone call and got help in the form of a Long Cane (long white stick with ball on the end and red bands) it was time to face my fears and tell the world I was 'coming out'.

Over the coming weeks I trained to use the long cane and all the poeple that knew me had faces of shock seeing me with it but soon adjusted. I personally felt and still feel awkward with it.   I feel vulnerable and alone.  I couldn't be without it now, as it puts my eyes on the floor through my hand and gives me the freedom to hold my head up and look around, where as before I walked with my head down.  There are still people who don't see it,  don't know what it's for......someone even thought I was picking litter!

I asked for a review of my condition with the hospital and had an appointment with my consultant, he registered me as severely sight impaired (blind).  I am now in the process of applying for a Guide Dog.


Tuesday, 04 November 2014 00:00

Coming Out

Coming Out

It's always interesting to read how people with hidden disabilities tackle the whole "Coming Out" procedure.

For me it was a procedure.  There was nothing natural about it.

Having been born deaf that had never really been an issue in fact while I was young my hearing aids were quite the fashion accessory.  I chose bright coloured hearing aids and sparkly or funky coloured moulds each time I could change them. I was never embarrassed or shy about my hearing aids in fact when I was poorly and couldn't wear them I was devastated as I couldn't be like my friends, I couldn't join in, couldn't chat and felt sad and isolated, even having just one hearing aid wasn't like having two, I was unbalanced and felt left out - being deaf meant that to me.

Hearing aids made me deaf but able to fit in and I was cool with it.

However the onset of blindness to add to my deafness was not cool and now I felt very different!

Was it my age? I'd been born deaf so knew no different. Was it fear? I'd had perfect vision and used it to compensate for my deafness.

Why was it so different? 

There is no equivalent to the hearing aid for the blind. Glasses cannot help my blindness.  My blindness makes it harder for me to hear because we hear with our eyes - lipreading, body language and gestures all gone, the things I took for granted gone.

I guess it was a lot to take on board as a youngster, peer pressure, hormones and this, I just wanted to be like everybody else and get on with being young, seemed the easiest thing - just get on as normal!

Fitting in is important, we often forget who we are I suppose and I was comfortable with that accept I knew deep down I was different.

It was the easy option, pretend, make light of the many calamities of being deafblind - falling over, walking into people and things, not hearing, mishearing - laughing at myself.

I now know the only person I fooled was myself!

Then came the cane, I hated it from day one.  I had proper training with both long and short cane - never quite got the point of a short cane and as for the long one, walking along swinging it from side to side was anything but blending in now I would stick out like a sore thumb.

From the day I was trained to use my cane I should admit to always carrying it folded in my handbag, I guess subconsciously I knew one day I'd have to use it!

The thought of looking disabled now pained me.

I'm not one for the sympathy vote and the very thought made me cringe.

I then tried to stay in my comfort zone which I now know caused me to isolate myself.  That said I was able to access the outside world remotely, I was lucky enough to have a MacBook which became my main link to my friends.

Unless I was with somebody I wouldn't leave the house unless I really had to.

The so called break came when I was matched with my gorgeous Guidedog Unis but again it meant "Coming Out" and it wasn't easy to start with and made even harder by the way I was treated - "You don't need a Guidedog" "You were fine yesterday, why the dog today" "You can use the Guidedog but only when we say it's ok" "You don't look blind" - I cannot tell you how much mental trauma that caused me, damned if I do and damned if I don't.

Such ridiculous comments, let's face it a Guidedog costs in the region of £50,000 so why would I be given one without the need  - they are not a fashion accessory but a mobility aid, for me a more desirable one than the cane.

It took me a long time to accept deafblindness and its daily challenges including mobility problems.

Today I would not for one moment be without Unis, she is everything to me our bond stronger than ever and I've even made up with my cane - we won't ever have the bond Uni and I share but when I cannot use my faithful four legged friend I have no problem taking out my cane.

Acceptance is tough but along with it comes empowerment.  I still love my MacBook because it allows me access to so much including people like myself all around the world, however, I am no longer a prisoner to Usher Syndrome.

I am passionate about raising Usher awareness and in helping others come to terms with the many issues we face.

I want those around us to accept us for who we are and to appreciate our unique abilities and talents, we have so much to offer but before we can be who we really are we must be honest with ourselves..


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