They always joke I am a fraudster and only do it for the disability allowance.
I thought getting a cochlear implant was the biggest mistake of my life
Thursday, September 8, 2022
My name is Harriet Amos. This is my story as a profoundly deaf child journeying to adulthood in a hearing world. My parents began to realise I wasn’t hearing well when I was around the age of three. I remember my parents covering their mouths to see if I could hear, and I would easily become frustrated and angry.
I remember going for hearing test after hearing test. But I was so observant that somehow, I was passing every hearing test even though my mom, who knows me best, was convinced I had hearing loss. After countless referrals and evaluations, I was finally diagnosed and fitted with hearing aids at seven years old.
Getting by with hearing aids
As soon as they put my Phonak hearing aids in my ears, I looked at my Mum with a smile from ear to ear and said, “I can hear the birds singing.” My Mum said it was a car alarm and burst into tears.
Everyone around me is hearing and no one signs, so as I began to go through school struggling and missing certain words, I found myself filling in the gaps. Time after time, however, I would get it totally wrong. I know a lot of people with hearing loss can relate to that. But usually, if I didn’t tell people, they wouldn’t suspect that I was deaf. They always joke that I am a fraudster and only do it for the disability allowance. If only that were true!
I chose not to go to college. I really just wanted to get to work. One of my job managers wanted me to make phone calls. In that organization, our clients were not native-English speakers, so there would often be an accent. I explained that if this was part of my job, I would need an interpreter. They refused and said that wasn’t professional. I was earning good money, but I couldn’t stay in and environment where I felt discriminated against.
When hearing aids are not strong enough
A year ago, when I had another hearing test, I was told that hearing aids were not strong enough for me anymore and that I should consider a cochlear implant (CI). I was referred to Cambridge Addenbrookes Hospital, and it turned out that I was a perfect candidate for a CI.
I was told not to expect to hear straight away, and that I had to put in lots of brain training and hard work. But having had hearing aids changed so many times, having been told each time that I had to learn to hear with new aids, I automatically thought that the new CI would be a similar experience, and that I would be able to hear.
Everything I was reading about cochlear implants was positive and stated that on switch-on day people could hear everything. So, on September 8, 2021, I drove to Cambridge to have my surgery. The procedure was successful, but two days later I put in my hearing aid and broke down crying. I knew there was no going back now since I wasn’t able to hear with my hearing aid anymore, which was one of the risks of the operation. I knew this was going to be the hard part, as I could only wear one hearing aid! But I just didn’t realise how hard!
"The biggest mistake of my life"
I managed to get a switch-on day for September 29, 2021, and all I could think about was being able to hear for my birthday. I woke up on that day so excited, but by the time I walked into the audiologist’s office, I was crying. The audiologist asked what I was scared about, and I said I wanted to be able to hear the same as I did with hearing aids, or better. She told me bluntly that isn’t going to happen today. But I still didn’t believe it.
She told me bluntly that isn’t going to happen today. But I still didn’t believe it.
After all the testing and programming, she finally told me that I was switched on. I was convinced she did something wrong. All I could hear were beeps, and I couldn’t make out any words at all! I was also told that my brain would adapt to the new CI quicker if I used only it, so I couldn’t even rely on my other hearing aid to hear. As I left my appointment, I phoned my Mum crying, convinced that this was the biggest mistake of my life!
The turning point
Nevertheless, I did the rehab exercises and hearing training as instructed. But “frustrated” doesn’t begin to describe how I felt about it. I could get something right five times in a row, and then would get it wrong on the sixth. I felt there was no consistency.
Every appointment, I would tell them that I was making so little progress I still regretted the surgery. But finally, in December 2021, I went to my appointment and was greeted by a deaf audiologist named Mira. I felt a tiny spark of hope thinking perhaps she would understand and could help me. Mira made some mapping changes and also set up my other Phonak Marvel hearing aid to work with my cochlear implant. So now, I was able to hear with both the cochlear implant and my hearing aid. And when she was done, my face lit up! I was smiling from ear to ear! I could hear everything!
I walked out of that appointment like the little seven-year-old girl getting hearing aids for the first time. I was hearing everything! I could stream music and make calls while driving. I felt like I was on cloud nine! Something that I thought was the biggest mistake turned out to be the best decision I have made in my life!
It will be worth it
I now have the best of both worlds. When I want to fit in and hear, I can. When I want to put a pillow over my partner’s face for snoring so loud, I can remove my head piece and not hear it! I continue to be amazed at the clarity of sound that I hear. Music sounds amazing, and I’m constantly discovering new sounds that I’ve never heard before. With my new CI, I now aim to do all the things I’ve never done before!
For anyone thinking of having the surgery for a cochlear implant, be prepared for the hard work. Don’t get deceived by emotional YouTube videos of switch-on appointments, thinking you’ll hear everything at that first appointment. It takes rehab training, multiple mapping and adjustment appointments, and patience. Somewhere along the line, you might suffer setbacks and disappointments, but don’t lose hope. I promise you in the end it will be worth it!
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