The other day I did something which not many people in my position do. I am hearing-impaired, and I chose to have my cochlear implant removed. To understand why, I need to take you back 20 years.
I have a disease called , which causes tumours (mostly benign) to grow in my eyes, brain, spinal cord, ears and some abdominal organs. Surgery is often the answer, and I’ve had many in my 41 years. I am blind in one eye.
When I was 19, I had my first brain tumour removed. A few days later, I sensed something was amiss with my hearing. I told my neurosurgeon and he rubbed his fingers near each ear. He frowned when I said I couldn’t hear the rustle on the right side.
An audiology test later confirmed I’d lost complete hearing in that ear. As this was likely caused by nerve damage, a hearing aid wouldn’t help.
“Well, that’s why we have two ears,” I was told.
It was a flippant comment, intended to have the tone of, “Look on the bright side!” – which I did, because at the time I also felt immense gratitude to be alive. I could have lost a lot more in surgery. This was small in the scheme of things, I figured.
Being deaf in one ear isn’t as simple as getting used to something, it’s a disability. It’s not knowing where to look when your name is called
But I soon understood that being deaf in one ear isn’t as simple as getting used to something, it’s a disability. It’s not knowing where to look when your name is called. It’s being at the supermarket and not hearing someone on your deaf side say, “Excuse me,” and then, “So rude,” when they squeeze past you. It’s never trusting your hearing when you cross a road. And it’s also running in a panic through your house looking for your toddler. He’s screaming in pain but you can’t work out where he is.
So yes, life with one functioning ear is disconcerting. But little did I know that the hearing in my good ear wouldn’t last, either.
When I was in my 30s, I began experiencing attacks of hearing loss which were attributed to a tumour in my hearing ear. A tumour that wasn’t appearing on scans.
After one particularly bad drop in hearing, a specialist sent me for a test. He also wanted to find out whether my deaf ear really was due to a damaged nerve in surgery all those years ago. If it wasn’t, he had an idea.
At the test, an electrode was sent down my silent ear and my eyes widened in amazement. I’d heard something. A cicada-like buzz. I couldn’t believe it.
This meant that a cochlear implant was possible. If hearing in that deaf ear could be aroused, then the implant could save the day when it came to the deteriorating hearing in my “good” ear.
I jumped at the chance to get the implant, even though my ear surgeon told me to have low expectations. “Almost 20 years is a long time for your brain to not hear from that side,” he warned me.
He was right. In my case, my cochlear was very calcified. This meant that instead of the electrodes being cushioned by fluid, they were bouncing off a bone-like surface. In this environment it was unlikely the cicada sounds would become decipherable speech. What's more, I “heard” these through facial twitches, thanks to my facial nerve being stimulated.
So the hope I’d pinned on a cochlear implant working gradually turned into disappointment and then despair. The hearing in the other ear continued to erode. Scarily, the hearing loss and associated vertigo attacks became unbearably frequent.
By then I was a mother of a five-year-old and a three-year-old. I had a walking stick to cope with the vertigo and I stopped driving. I worked when I could. On some days I could function okay, but on others I was barely able to stand and had to rest in bed, not hearing Peppa Pig on the television in the next room.
I couldn’t be the mother and partner I wanted to be, and the increasing sense of disconnection I felt with my children and husband was distressing
My heart ached. Not just for me but for my family. I couldn’t be the mother and partner I wanted to be, and the increasing sense of disconnection I felt with my children and husband was distressing. My young son would clasp my face in an effort to talk to me, making sure I was reading his lips. Communication was an effort for us all. Sometimes it was simply too hard. I felt alone.
Then my ear surgeon made a suggestion. Not wanting to wait any longer for the suspected tumour to appear, he recommended exploratory surgery. I decided to go ahead with it, and a tumour was not only found, but removed.
The vertigo stopped after that and my hearing gradually improved in the good ear. I didn’t regain all my hearing, but my hearing aid now compensates for what is a stable loss and has been so for two years now.
A few weeks ago I decided to have my cochlear implant removed. The cicadas have stopped chirping and my face no longer twitches. My deaf side is now silent again, as it has been for 20 years.
My disappointment in my failed cochlear implant has now shifted to something else: acceptance. I’ve realised that my hearing is what it is. Single-sided and impaired, but I still have enough to get by. For me, this was the best outcome of all. I didn’t need the cochlear implant to save the day in the end, but I did need my life as I knew it to return.
I can now live in the moment instead of desperately trying to fix something too far gone.
Acceptance, when you arrive at a place of peace, is incredibly freeing.
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