The Jekyll and Hyde of Usher Syndrome

A sign saying "I opened two gifts this morning. They were my eyes"

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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.

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