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Wednesday, 16 December 2015 17:58

The Jekyll & Hyde of Usher Syndrome

I had never heard of Usher Syndrome until I worked with a girl who has it.  

If I’m honest I saw her come in and out with her guide dog and she appeared to be ok, never asked for help, seemed to cope as well as the rest of us.

I didn't know the girl very well but she was popular.

I feel bad admitting this but I was kind of suspicious of her as she seemed so ‘normal’ that I googled Usher Syndrome and was surprised to learn she was deafblind and that deafblind doesn't mean hear and see nothing which then explained why she spoke and why she has a guide dog.

I was really curious, I should have just asked her but it seemed rude, looking back I should have just asked rather than wondering how she coped.

Anyway, she and I became friends and I told her about my first impressions and how I found it hard to believe she hd a disability even though having a guide dog should have confirmed it and that I felt terrible about it, she told me not to, it was nothing new, she just wanted to get on with her life, be understood and wanted absolutely no sympathy, “It could be worse” she said! 

Sadly it seems I am one of many who needed to be educated, my friend told me how she often finds the ignorance of others more challenging than her condition which really is very sad.

She told me she was used to this sort of thing and tried not to let it trouble her, even though it can be difficult.

I remember we met in the April and we got to know each other really well through the summer, she was great fun, we laughed a lot, she even laughed at herself when she tripped or had what she called “an usher moment’ not sure I would have been quite so jovial living with her daily challenges.  

I learnt a lot from my friend, she rarely complained, just got on with life occasionally asking for help but nothing much.

However as winter came, the nights drew in she changed, was almost a different person.

I didn't understand why she always wanted to head straight home, never wanted dinner or even a drink after work, always seemed in a hurry to get home, was strange.

It seemed she only came out sociably if she was with a friend she had from school days, I didn't get it, actually felt a little pushed out so this time I confronted her and asked why she was so off with me, she was shocked I felt that way and sat down and explained why she behaved differently.

On top of the tiny window of vision is night blindness and bright lighting in shops, the changing lighting everywhere as well as bright summer sunshine which make her challenges even greater, I hadn’t considered any of that, again it was me feeling silly but it was so strange.  

The happy go lucky person she was through the summer became like a Jekyll and Hyde, a Cinderella rushing home before dark!

How cruel is this condition? 

Its completely misunderstood, I googled it and still didn't understand it properly because the only ones who truly know are those who have it and live with it day in day out.

Just wanted to get that in writing just in case it helps others understand.

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


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