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Thursday, 21 May 2020 16:15

The Reality of Usher Syndrome

Written by  Colin Hetherington
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Well folks today so far for me has been a real rollercoaster of emotions.

To be honest I’m usually very straight forward and generally a get up and go sort of person, however today it felt very different!  Firstly I got up later than normal 10am which is not like me, usually by this time I have done a daily 4 mile walk in the woods with my guide dog Frankie if we are not working.  Something I know is good for my all round wellbeing.

Noticing the time I jumped up and headed to the kitchen where Lyn my wife was, she was organising breakfast for me.  I certainly wasn’t myself as It had taken me a little while to realise I hadn’t put my LiNX Quattro hearing aids in. I noticed I was only picking up the odd word from Lyn as we tried to piece together a conversation.  I then realised that Alexa was playing something in the background, it was simply just a noise!  It was at this stage I realised two things, just how deaf I am and also how totally reliant I really am on my new hearing aids.  Having worn LiNX Quattro for over 6 months now I have gotten used to hearing music and recognising songs without any problem. 

Lyn then got up and walked away bit still talking to me, wearing my new hearing aids I usually hear every word but not today.  Something else I noticed was not only have I got used to the sound I access with my hearing aids but so too has my wife!  Today I had to asked her to repeat herself several times which she did, apologising that I couldn’t hear her!  I soon put my hearing aids in!

We have been busy spring cleaning throughout the lockdown and today we were clearing out the bedside drawers, I came across all my old spare hearing aids , changed batteries cleaned tubes etc , always good as a back up I thought!  I took out my LiNX Quattros and  popped them in my ears to remind myself of what I used to live with.  The sound was horrendous, crackly and as if I’ve got a bad cold and they felt massive!

I was told by my old audiologist that I had the best available equipment, I used to think I had the best equipment and they were good but in truth they don’t come anywhere close to what I have now! 

After cleaning out I went for lunch with my wife again at the kitchen table we talked . She knew something was really bothering me.   Alexa was playing, I asked Alexa for the volume, she told me volume 3, I could hear every word perfectly wearing my LiNX Quattro, so I asked Lyn what volume was on for me without hearing aids earlier in the day, she said you start to pick up on some sounds at around volume 6, so I put Alexa on Volume 6 and it was far too loud for me, actually uncomfortable for me wearing my LiNX Quattros. 

This hit me Square in the face as to just how bad my ushers syndrome type 3 is now and how it really is catching up on me.  For those who do not know, Usher Syndrome type 3 is the rarest type and it often means we are born with both hearing and sight and sadly can lose both.

I’m not embarrassed to say this but it’s the first time I’ve ever cried at the harsh reality of deaf-blindness. I feel so damned privileged to have these aids and generally good health. It’s left me thinking very deeply today as to why I’m in this position and how I can help others.

I have a voice I strongly believe I need to shout as loud as I can so that others not able to shout can also be heard.

The deafblind community need the best assistive technology available as standard we should not have to fight tooth and nail for things that truly enhance our lives. 

The better the quality the more enhanced and enabled our lives are and the more inclusive we can be.

There is no feeling like independence and the ability to live fulfilled lives.

I know I lose a bit more sight and hearing every year but I strive to be independent as long as I possibly can so I personally strive for the best equipment to help me along on my journey of deafblindness. 

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