C’est la vie!

An old green car in a field next to an old dirty white van.

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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.

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