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Friday, 10 July 2015 06:15

Let Me Be a Part

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...

Monday, 10 November 2014 00:00

Anum and Usher

My name is Anum, I am 20 years old, soon to be 21.

Some of you probably know that I have Usher Syndrome as we went to the same school.

Where can I start?

I was born in Africa, Kenya, some of you couldn't believe that I was born there but I was.  

I was born hearing, then when I was about 8 months old, I got meningitis. My family wasn't expecting that to happen and struggled with what to do about me because I was only 8 months old.

We went to the hospital for a few checks up. The doctors told my parents that I was fully deaf and there was no going back. So my father who is currently in Kenya made a huge sacrifice to send me away to England to have a better life, better education and a better future.

So I moved to England when I was about 1 year old with my mum, my brother and sister while my father stayed living in Africa, working hard as a doctor for his whole life. We still do go to Kenya and visit him in the summer of course, sometimes it can be hard because of the distance! Anyways we moved to England and I started a hearing impaired primary school and while there I had some problems, with falling down, banging in something, dropping objects and unable to find things!

My teaching assistant noticed something wasn't right while I was doing games, I kept falling over, being very clumsy and unable to find the ball. After this happened she informed my mother about it. My family noticed as well at home and got concerned. So they decided to take me Moorfield eye hospital for a check up.

To be honest I don't even remember going to that hospital for the first time because I was only about 9 or 10 years old. They told my mum that I have Retinitis Pigmentosa which is the blind part of the Usher Syndrome. This made my life really difficult because my deafness and blindness were linked together.

I was aware I had Usher Syndrome when I was 10 years old. I struggled so much, struggled to see in the dark, worried what other people would say, got so frustrated when I trip over, bump into people, even though I do say sorry to them but they gave a bad attitude back which is dreadful, I get so upset when it makes my life hard but I won't let Usher Syndrome take my life over. I am always try to be strong.

My family and close friends understood it and supported me through it. They also help me in the dark as their guide. I really do appreciate it because I do need some support!

I hated going to hospital for my eyes check up, it was horrible and dreadful. I hated the eye tests and eye drops. Even worst I hate hearing not very good news from the doctors which upsets me. Sometimes when I go to the eye hospital for my check it takes hours, then at the end there is bad news.

I get really frustrated and wonder what is the point of going there because there ain't gonna be any miracle or cure to make my eyes better but what can I do?

What has happened has happened, no one is perfect and we have to be happy with what we got and what we can achieve.

I went to a boarding school for 8 years and met few people who got ushers. They probably felt similar to me.  I was glad that I wasn't the only one.

At first I used to let my ushers bother me,  stop myself from going out with my friends, used to stop myself from being social, used to stay indoors but then  I realised that it was making my life miserable so I decided to do what I wanted to do. I go out a lot, have a good social life.

I go clubbing which involves the dark with lots of flashing lights and I have support from my friends and family who keep their eye out for me and always make sure I am ok.

You mustn't let your ushers stop you from anything. Be happy and do what you want to do and what you always wanted to do.

There are days I feel so down but I try to do lots of things to keep busy and avoid being negative. I used to be negative but now I am not. Good days and bad.

For those who have Usher Syndrome, you are not alone, try not to let it bother you. Sometimes I get dreadful headaches, eyes aching, feeling dizzy, flashes, tired and weak. Sometimes I get very clumsy and fall over or trip over and my friends would laugh at me and I would laugh at myself  because I don't let it bother me! I am glad I am not alone and totally understand you guys feeling! BE STRONG AND DON'T LET YOUR USHERS BOTHER YOU even though it's a horrible condition! Keep smiling