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Friday, 10 July 2015 06:15

Let Me Be a Part

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In a lot of my talks I often mention how grateful I am to have great family and friends. I could not imagine myself as a person without either, I really cannot.

As I grew up I was very close to my parents and am lucky to have been well socialised.

I have some amazing and happy memories, from days out to holidays.

I always also looked forward to being with my friends at school.

I have mentioned before I knew I was different pretty early on.

Lots of my friends were walking to/ travelling to school independently, I was walked or was put in a taxi to get to school.

I always had to leave the house with my friends to be assured of my safety or I would get my parents to drop me off exactly where I needed to be.

Not being able to hear cars from very young, and then with my eyes failing so quickly I wasn’t able to be as independent as my friends.

I didn't resent this until my sister grew up and realised just how dependent I was and had been through my younger years and right the way through my teens.

Now with Unis I have independence, I know it isn't the same as most but it's as good as it gets for me.

I work part time, spearhead my charity advocating for others and I'm currently building up my own business as a Motivational Speaker - I work very hard and it's exhausting but I am very determined.

I am a very sociable person - believe it or not being sociable is really hard work for me but I'm no different to lots of 20 year olds in this respect, I want to be a part of what is going on.  Be it with family or friends I love eating out, sitting in a pub chatting, clubbing, or partying - I like a good laugh but doing these things can be quite a challenge but on the whole those close to me know how to make life easier without making me feel a burden, thankfully as that has to be the worse feeling ever.

Last week, for the first time in a long, long time I got forgotten, I cannot tell you how upset I felt and nobody was really to blame - it was a real "Usher Syndrome" moment "isolation" I was very hurt and a painful reminder of what this hidden condition can do to those of us burdened with it.

An arrangement was made for drinks two train stops away with a group of colleagues and friends, the arrangement had been made with an online chat application which isn't great for me if its a long conversation with lots of people taking part it is virtually impossible for me to keep up as I have the font so large it would take me forever to keep a track of the conversation - I missed all the details and along with it the night out.

I was very hurt and to add to the hurt were the pictures posted online of everybody having fun whilst I was sat at home.

I know this situation wasn't manufactured on purpose but it happened all the same and I would like those around me to consider how they would feel if it happened to them.

I only ask that there could perhaps be a conversation on a one to one with me so that I know what it happening and I can then plan so that I can be included.

I have socialised as part of this group a few times and I don't think it was too big a deal for anybody else but it made a huge difference to me - I was dropped at the station where I was met by a friend and we travelled together, previously I was collected from home and we travelled by car, of course I'm always happy to offer travel expenses - I just want to be a part of things.

Guidedog owners are not permitted to work their dogs under the influence of alcohol so I am unable to be completely independent if going clubbing or partying which is absolutely understandable.

I work tirelessly to make people aware of the many daily challenges people like myself endure and I guess I'm fortunate these instances don't happen very often but when they do it is a constant reminder of the isolation Usher Syndrome can cause.

I never want to feel or be a burden to anybody but the reality is I do need assistance sometimes, we all do from time to time.

So for those who think mobility isn't an issue to those with Usher Syndrome think again, not only is it an issue it can cause real isolation...

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