For me having Usher Syndrome means I have had to make full use of my residual hearing.
As I write this blog there is no cure for Usher Syndrome and nothing to help or enhance my blindness, however, there is amazing technology that exists for deafness.
Over the past years Cochlear Implant has been amazing for the profoundly deaf, particularly children who are bilaterally implanted from very young.
Their ability to access sound is amazing and as a result we have a new generation of profoundly deaf who’s first language is speech.
Speech definitely leads to independence and inclusion in society.
I have recently been reading horror stories about the deaf who need or rely on interpreters and the cost cutting for this. I can only imagine how devastating and isolating this must be.
My parents made the early decisions for me and I will always be grateful of their determination that I would be oral and my Mum making it fun for me whilst learning to speak.
As my sight deteriorated I became more and more dependent on my residual hearing and the need for the best technology in hearing aids became all the greater.
I got by with my NHS Phonak hearing aids for years and they were ok, I could access speech and be independent, however they were only ideal when I was in a quiet environment, well lit room, when on a one to one and when able to lipread. I could use a phone for basics but could not have a proper conversations without mishearing so would never trust or put myself in that position.
How often are conditions perfect for the deaf in everyday life, at work, on a bus, in a car, the answer is very rarely!
So, yes these hearing aids are ok but very limiting for real everyday access and when you cannot see we need much more and what is more there is much more high tech available.
Until I was fortunate enough to come across GN Resound and experience their technology I didn't realise just how much I had missed out on.
The Linx2 are inclusive, they are life enhancing, they are life changing, they have educated me and perhaps most importantly they have kept me safe.
To break it down, I am now not completely reliant on a quiet environment to have conversation or to join in conversation I have control over the environment with my Linx2.
I am now confident to have conversation with customers when I’m in my work place and I rarely mishear, taking into account I am not often able to use any visual clues this is absolutely fantastic for me.
Linx2 have enabled me to hear around me, to know where sounds are coming from and what the sounds are.
I can hear sounds outside when I’m inside, I’ve never experienced that before and I’m enjoying these new experiences.
I have learnt about my own hearing for the first time, I have control of how I hear and this has given me a new confidence, so much so that since having my Linx2 I have not only been interviewed live on the telephone by a radio station but have taken part in a conference call, things I would never have trusted myself with with my old hearing aids.
This might not sound a big deal to many but if you could try and imagine your life / work life without being able to speak on a telephone. Being outside and not being able to see or hear danger perhaps you will appreciate how life changing these hearing aids really are.
I recently met with some friends I haven't seen since the beginning of the year and they were commenting not only on how much clearer my voice sounds but how much my vocabulary and confidence has grown which is amazing considering I am 21 years old and have had these hearing aids only 5 months.
It just shows its never to late for things to improve and I cannot help but wonder what a difference these hearing aids could have on children going through the hours and hours of speech therapy that I went through.
I grieve for my sight everyday but life goes on and at least I have access to fantastic hearing aid technology which I feel all hearing aid users should have.
I have been asked if I like the Linx2 beause of the clarity in hearing or because of the technology - the answer is I like them for both reasons but above all I like them because they have enhanced my life.
Life with Usher Syndrome is very challenging but with the right accessible equipment we are a very capable bunch.
Every morning I wake up with no sight or sound, however my world is brightened knowing when I reach across to my Linx2 and switch on I become inclusive and for that I am eternally grateful.
MWT is looking at the possibility of a project to fund Linx2