I’m Amy and I’m 24, and profoundly deaf.
I never know where to begin or how to go about telling people about my deafness, but here it goes…
I was born in 1998 but it was only a while after that the doctors noticed that I hadn’t been responding to anyone, including my parents. It was from here that I got my diagnosis. I am profoundly deaf in both of my ears- what this means is that I cannot hear anything. (Some people don’t always realise the magnitude of this. Yes, I really can’t hear anything, not even a really, really loud noise.)
On March 17th 2000, I went to Great Ormond Street Hospital, in London, to have an operation to have a Cochlear Implant in my left ear. This meant that I would have an internal implant inserted inside my head, to connect with my cochlea. This would then bypass the part of my ear that wasn’t working and send sounds straight to my hearing nerve and brain. I would then wear the external sound processor on my ear to pick up the sounds.
Wearing a Cochlear Implant would mean that I would be able to ‘hear’ like ‘normal hearing people’, but whenever I took it out, I would be back to being profoundly deaf and not hearing anything at all.
There is sometimes a confusion that a Cochlear Implant is the same as a hearing aid, but they are not. Hearing aids are designed to make sounds louder, whereas Cochlear Implants replace the function of damaged sensory hairs within the inner ear and allow deaf people to have access to sounds.
While it seems like a modern-day miracle, it is important to understand that having this operation wasn’t a quick-fix solution to my deafness, it meant that I would spend my childhood having very regular visits to GOSH so that I could train my brain to understand and learn each of the sounds.
In 2012, I then had a second operation, but this one was to have a Cochlear Implant in my right ear.
I now go to St Thomas’s in London where I have yearly check ups to ensure that my implants are working as they should, and I have to do many hearing tests to see which sounds I can hear. These tests are hard work as I have to listen to a variety of sounds and concentrate on which ones I can hear and then notify the audiologist. Sometimes I will be introduced to new sounds so that I can continue to develop my brain and become aware of more sounds.
Only in the last two years I have been able to hear the sound that cars make when driving through puddles.
I still struggle to differentiate between ‘ch’ and ‘sh’ sounds, as to me, these sound very similar, and it means that I sometimes mishear what has been said. I often find myself asking people to repeat what they have said.
Despite using my Cochlear Implant to hear, I still mainly rely on lipreading to communicate with people. If it is dark, or I can’t see someone’s face and mouth as they speak, I find it almost impossible to understand what is being said as I rely on watching their facial expressions and their mouths moving to lipread- this also includes phone calls, which I avoid.
As you can imagine, trying to talk with people who were wearing masks during the Pandemic (Completely understand why they were worn) was impossible for me and made me feel like I had been cut off from the world as I could no longer communicate with anyone.
The #clarityincommunication campaign has been a fantastic way raise awareness and to work with businesses in helping them to understand our needs in communicating with people, especially when wearing masks and how to navigate around this barrier.
One other thing I have struggled with is that I have never met anyone else with a Cochlear Implant, due to going to a mainstream school- not that I regret this decision as I don’t! I made some great friends at school. It just means that sometimes I can feel isolated and like I can’t relate to anyone as I don’t know anyone with the same struggles as me.
Meeting Amy (Great name too!), from Living with Hearing Loss has been wonderful as for the first time ever, I’ve been able to relate to someone and it has been lovely speaking with Amy as we have both been through similar things growing up.
To this day, I still cannot hear all the sounds of the world, and I never will. However, I am so grateful to have my Cochlear Implant as this means that I can hear my family talk, the purring of my cat, the music that my DJ friends create, attend festivals and so much more.
Everyday is a learning day for me and I look forward to hearing more new sounds.