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About Deafblindness


Imagine growing up hearing impaired and doing your best to keep up with the normal hearing kids. The effort you make to constantly adjust and adapt all the time to your hearing as it gets worse. It’s exhausting.

When you near forty years of age you find out for the first time just how little hearing you have left. You think well there is nothing else for it but to have cochlear implants. The hearing world is all you know and this is how you can hold onto the normal hearing world.

You have them done 1 ear at a time, 1 year apart. At first it’s great! Fantastic! You are hearing in a way you have never been able to before! Then one year post activation, both ears go into decline. You are losing your ability to hear all over again. You keep dropping the stimulation in order to escape the pain and sound blending you are now getting. Finally you are told you have neuropathy of the auditory nerves. This is why you get distorted sound and pain, your hearing nerves get fatigued and can’t handle the cochlear stimulation.

Your surgeon asks if you will agree to genetic testing to try and find out if there was an answer to why this is happening. You say yes because you are in need of answers. Covid-19 strikes around the world and it’s 18mths before you finally get the results back.There is a reason and the answer shocks you.

At 47yrs you find out you have Usher Syndrome type 2. You are going blind too and it leaves you shattered all over again.

Published June 29, 2021.