[nfb-db] FW: How I heard for the first time . and became an internet sensation

[Darlene Laibl-Crowe]

FYI

How I heard for the first time . and became an internet sensation

 

I was born deaf due to Usher syndrome, so hearing birdsong and running water
at the age of 40 was beyond words

 

Jo Milne <http://www.theguardian.com/profile/jo-milne>  

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theguardian.com, Thursday 3 April 2014 04.16 EDT       

 

Last week I hit the headlines when a video of me hearing for the first time
after having cochlear implants fitted went viral. If you have no hearing it
is difficult to imagine what it will be like to hear for the first time, and
I was completely overwhelmed by the experience.

 

I was born profoundly deaf, although this wasn't immediately obvious to
doctors, and it wasn't until I was two years old that I was formally
diagnosed. My earliest memory is that of my teary mum watching me leave in a
taxi every morning on my way to school wearing my phonic ear box attached to
my chest. Thankfully, hearing aids have improved over the years, and in most
cases it is no longer immediately obvious that a person is deaf, or in my
case now, deafblind.

 

As a young adult I delivered deaf-awareness training and actively became
involved in changing attitudes and improving services for people with
disabilities. I was a very confident young woman, and being deaf was just
part of who I was. But this all changed. One day, driving home from work, I
realised that I could no longer see what was coming in my wing mirrors. I
gave up driving there and then and went to the doctors for tests. It was
confirmed that I had Usher syndrome. I was 29 years old.

 

Usher syndrome is a genetic condition that affects both hearing and sight.
The sight loss is caused by a condition known as retinitis pigmentosa, which
leads to a progressive reduction in vision. There are three types of Usher -
I, II and III. The age of onset, the extent and progression varies with each
person and type. There is no cure, but steps can be taken to control the
emotional and day-to-day impact. Research currently underway means
treatments in the future may slow down the rate at which a person loses
their sight.

 

Being diagnosed with Usher syndrome dramatically changed my life. I did not
know where to start, and found it hard to contemplate that I was no longer
just deaf and had to start living life as someone who was deafblind. I felt
that I had lost my identity, but began to realise over time I was in fact
just the same.

 

The future petrified me - I knew my sight would not come back but get worse
- but step by step I had to prepare. I received training in how to use a
cane and was given a guide dog to support me; adopting a positive outlook
really helped. As we are all getting older, life throws things at us and we
have to deal with emotions and difficulties the best we can, and I find it
makes you a stronger person.

 

Before you have cochlear implant surgery, there are no guarantees it will
work, so in some ways I wasn't expecting much. Hearing sounds such as birds
singing and water running for the first time is beyond words. Sharing this
moment with the world has also been amazing and has been a brilliant
opportunity to raise awareness of Usher syndrome and of deafblindness. One
of my friends phoned in to Lauren Laverne's radio show on 6 Music, and
together they created a playlist of songs for me to listen to, which she
played on air. The response has been incredible, with lots of strangers
sending me songs to add to the playlist via the hashtag #songforjo. I'm
going to listen to them all.

 

My day job is working for the deafblind charity Sense as an Usher peer
mentor, supporting others with the same condition. I'm glad that the video
of me has helped raise awareness of Usher and deafblindness. It's strange to
think that so many people have seen what was probably one of the most
significant moments of my life, but I'm glad I chose to share it and I hope
my story inspires others.

 

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