I removed my cochlear implant and accepted my hearing loss

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The other day I did something that few people in my position do. I am hard of hearing and have chosen to have my cochlear implant removed. To understand why, I have to take you back 20 years.

I have a condition called Von Hippel-Lindau Syndrome, which causes tumors (mostly benign) to grow in my eyes, brain, spinal cord, ears, and some abdominal organs. Surgery is often the answer, and I’ve had plenty of that in my 41 years. I am blind in one eye.

When I was 19, I had my first brain tumor removed. A few days later, I felt something was wrong with my hearing. I told my neurosurgeon about it and he rubbed his fingers near each ear. He frowned when I said I couldn’t hear the right side rustling.

An audiology test later confirmed that I had lost all hearing in that ear. As this was probably caused by nerve damage, a hearing aid would not 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. It was small in the scheme of things, I thought.

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 you call each other

But I quickly understood that being deaf in one ear is not as simple as getting used to something, it’s a handicap. It’s not knowing where to look when you call each other. It’s being in the supermarket and not hearing someone on your deaf side say “Excuse me” and then “So rude” when they sneak past you. He never trusts your hearing when you cross a road. And he’s also running in a panic through your house looking for your little one. He’s screaming in pain, but you don’t know where he is.

So yes, life with a functional ear is disconcerting. But I also didn’t know that the hearing in my good ear wouldn’t last.

When I was in my thirties I started having attacks of hearing loss which was attributed to a tumor in my auditory ear. A tumor that didn’t show up on the scans.

After a particularly severe hearing loss, a specialist sent me for a test. He also wanted to know if my deaf ear was really due to a nerve damaged during surgery all those years ago. If not, he had an idea.

During the test, an electrode was sent to my silent ear and my eyes widened in astonishment. I had heard something. A cicada buzzing. I could not believe it.

This meant that a cochlear implant was possible. If the hearing in that deaf ear could be aroused, then the implant might save the day when it comes to hearing deterioration in my “good” ear.

I jumped at the chance to get the implant, even though my ear surgeon told me to have low expectations. “Nearly 20 years is a long time for your brain not to hear from that side,” he warned me.

He was right. In my case, my cochlea was very calcified. This meant that instead of the electrodes being damped by liquid, they bounced off a bone surface. In this environment, the sounds of cicadas were unlikely to become decipherable speech. In addition, I “heard” them by facial twitches, thanks to the stimulation of my facial nerve.

So the hope I had placed on the functioning of a cochlear implant gradually turned into disappointment and then into despair. Hearing in the other ear continued to erode. Frighteningly, the hearing loss and associated bouts of vertigo have become unbearably frequent.

I was then the mother of a child of five years and another of three years. I had a cane to deal with the vertigo and I stopped driving. I worked when I could. Some days I could function well, but 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 growing sense of disconnect I felt with my children and my 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 growing sense of disconnect I felt with my children and my husband was distressing. My young son squeezed my face in an effort to talk to me, making sure I read his lips. Communication was an effort for all of us. Sometimes it was just too hard. I was feeling alone.

Then my ear surgeon made a suggestion. Not wanting to wait any longer for the suspicious tumor to appear, he recommended exploratory surgery. I decided to go ahead and a tumor was not only discovered, but removed.

The dizziness then stopped and my hearing gradually improved in the good ear. I haven’t regained all my hearing, but my hearing aid is now compensating for a stable loss and has been for two years now.

A few weeks ago, I decided to have my cochlear implant removed. The cicadas have stopped chirping and my face is no longer shaking. My deaf side is silent again, as it has been for 20 years.

My disappointment at the failure of my cochlear implant has now shifted to something else: acceptance. I realized that my hearing is what it is. One-sided and handicapped, but I still have enough to get by. For me, it was the best result of all. I didn’t need the cochlear implant to save the day, but I needed my life as I know it back.

I can now live in the moment instead of desperately trying to fix something too far away.

Acceptance, when you come to a place of peace, is incredibly liberating.

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