Tag: technology

My Hearing Addiction

.Reading time 10 minutes.

The rain is falling on our tin roof. I step off the veranda with my umbrella, and close my eyes. A tear slips down my cheek. I can hear droplets of water battering the umbrella with two ears. For the first time in 15 years. It’s a big deal. I never thought I would hear the world around me again in my left ear, except for the five torturing sounds of loud, relentless tinnitus – louder than any rock concert or loud party I had attended – a symptom of the abhorrent Meniere’s disease.

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The rain is in ‘surround sound’. It’s surreal. I twirl, slowly, without losing my balance. My own type of raindance, keeping my cochlear implant processor dry.

Bliss. Happiness. Beyond thankful.

My homeland has gone from heartbreaking drought to catastrophic fires to flooding rain. But nobody is complaining. Rain is water. And water is life.

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After a long moment of mindfulness, I return to my study. I have work to do. Learning to hear again. Not just sounds, but words and sentences to understand conversations to allow me to be confident with interactions with people, friends and family, and to restore my social life.

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I can’t lie. I was more nervous about the ‘switch-on’ of my cochlear implant – where you finally discover if the electrodes work, how many work, and whether you can hear, or not – than the almost two-hour surgery.

I was never really certain about what I would actually hear with my cochlear implant. And there were no guarantees that I would hear well, or at all, after 15 years of deafness from Meniere’s disease. I wondered, if I could hear, would it sound like ‘normal’ hearing? Would I be able to understand speech? Would I be able to hear music? Or, would I be lost in a world of robotic hearing that is so terrible and irritating that I will regret having the procedure done? What if it is not successful?

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I’m taking an enormous leap of faith. I’m diving into an unknown world. How many times have I read the words, “I’m too scared to get a cochlear implant!”?

On the flip side, how many times have I read the words,

“It will change your life!”

Before being activated, I watched online cochlear implant simulators that claim to sound like what is heard with a cochlear implant, but many of them didn’t sound like my implant. And many were dated a very long time ago, when the technology was new. Hearing with a cochlear implant has come along way since then.

The video that I think is close to what hearing with cochlear implant technology is like, is this one – and that was in 2014. Since then, cochlear implant technology has been improved and refined.

Learning to hear. It’s a new territory for me. A new journey. But one I am excited about.

I did a silent dance of victory when my cochlear audiologist told me I had to listen to audiobooks for at least 30 minutes a day to learn to hear. I LOVE reading!

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And then there were the apps for my iPhone (thanks to Apple for the direct connectivity to my CI – the Nucleus Smart). Apps filled with common environmental sounds; sight words; matching the sound to the visual word; matching the picture to the sound; word discrimination; sentences; and more (there’s a list of apps at the end of this blog).

The moment I started to listen to the audiobook, ‘The Lake House’, by Kate Morton, and followed the words in my print book, I startled.

Learning to hear is just like learning to read!

I should know. Over my teaching career, I’ve given thousands of students the gift of reading.

But with learning to hear, instead of learning what a word looks like in print, you are learning what a word sounds like. I’ve decided to call it a ‘SoundPrint‘. I don’t know whether that’s a real thing, but I like the concept of it. I like the thought of making a ‘SoundPrint‘ in my cochlear implant ear to make new hearing memories, and connecting stored memories of my once upon a time hearing to my new hearing. It’s like bringing beautiful colours of hearing back to the greyness of my deaf ear.

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I’ve got to admit, I’m addicted to my cochlear implant hearing. When I don’t have my CI processor on, I feel like a piece of me is missing, and I recede to my former self, the other me, all my senses on high alert – I didn’t realise how exhausting my life was before my new bionic hearing.

The gift of hearing. Thank you can never be enough to Professor Graeme Clark AC, the inventor of the multi-channel cochlear implant. My heart smiles everyday, thanks to you.

P.S. Some of the apps I use for learning to hear:

• Join your local library so you can download audiobooks. I choose the audiobook for print books I already have at home so I can follow the printed text while listening.
• Hearoes  https://www.games4hearoes.com/  FREE https://www.facebook.com/hearoesapp/
• Angelsound http://angelsound.tigerspeech.com/ FREE
• Children’s picture books are highly recommended – use Storyline Online https://www.storylineonline.net/ You can turn on captions, or, if you want to challenge yourself, turn them off

  • I’ve started compiling my Spotify Cochlear Music Collection – Cochlear Implant Music by Jules – it’s a work in progress, and I’m still on a learning curve with music. But I have discovered, that if I already know the song, it is easier to ‘pair’ the music with my cochlear implant hearing and my music memories before hearing loss 😊

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Julieann Wallace is a best-selling author, artist and teacher. She is continually inspired by the gift of imagination, the power of words and the creative arts. She is a self-confessed tea-ninja, Cadbury chocoholic, and has a passion for music and art. She raises money to help find a cure for Meniere’s disease, and tries not to scare her cat, Claude Monet, with her terrible cello playing.

‘The Colour of Broken‘ – The #1 Amazon bestselling book with a main character with Meniere’s disease – raising awareness and understanding.

Buy ‘The Colour of Broken’

Buy ‘The Color of Broken’

Buy the ‘Daily Meniere’s Journal’

Buy the ‘Monthly Meniere’s Journal’

100% profits from the above books are donated to medical research for Meniere’s disease to help find a cure.

About this blog …

My Shadow, Meniere’s, is not just about the physical aspect of a Cochlear Implant – you can research about them online. I am sharing the human side of the journey towards a Cochlear Implant – feelings, appointments, the process, apprehensions, successes, highs and lows as I step into the next chapter of my Meniere’s journey.

I am mindful of those who also have incurable diseases or are walking the path of a diagnosis that is life changing. My blog never aims to undermine the severity of anyone else’s illness, disability or journey. We all deal with life with different tolerances, attitudes and thresholds. ‘My Shadow -Meniere’s’ is my journey. It is my hope that it can help others with Meniere’s disease, or hearing loss, or simply when life has a plot twist.

I also acknowledge those before me, who have already had a Cochlear Implant. Your experiences, advice and suggestions are welcome.

It Will Change Your Life #8

.Reading time 10 minutes.

Wednesday 20th November – final expectations with cochlear audiologist

I’m feeling super nervous today. Anxiety has grown bigger than me, and my shadow, Meniere’s, is using it as a punching bag while tinnitus whistles. I have an appointment with the Cochlear Implant audiologist to discuss “final expectations”. This is my do or die day. My “yes, let’s do it day”, or, “I’ve changed my mind, I’ve decided not to go ahead with the procedure day”.

Do I really want to take the step into the bionic hearing world? Am I brave enough? I just want to sit and cry.

I suck in a deep breath. Calm, I tell myself. It will be okay. Be still and know. Faith.

My daughter sits beside me in the waiting room. We’re thirty minutes early. I flip mindlessly through one of the 50 million magazines displayed with obsessive spacing. I almost don’t want to mess up their perfection. Anxiety sits beside me and taps me on the arm. I shake my head at it while tinnitus holds on for dear life. I’m okay. My shadow, Meniere’s, is jumping from seat to seat, trying to catch my attention. I ignore it.

Jane greets me with a smile. The universal language that puts you at ease. Anxiety, tinnitus, deafness, my shadow, Meniere’s, and I follow her to her office.

We sit with a sigh and Jane turns to me. ‘Today is our ‘final expectations’ discussion.’ It’s all about ensuring that I know what I am signing myself up for.

She picks up her blue pen, and starts checking items off her checklist, questioning me for my understanding of each point:

– Technical aspects

– The Cochlear Implant manufacture of my choice – Cochlear or MED-EL – I choose Cochlear – based on conversations with many CI recipients.

– Ear fitting

– Care of the outer device of the Cochlear Implant

She stops talking and looks at me. ‘All good so far?’

‘Yes,’ I answer.

She nods, then pulls out colour samples, like choosing colours for a car.

I gaze down at them and narrow my eyes. Skin colour. Brown. Black. Grey. White.

‘Which colour would you like?’

I lift my chin a little as I visualise each of them on my head. ‘White, please.’

‘Really?’ Jane looks at my dark wavy hair.

‘Yes. Black is the colour of depression. I don’t like gray, skin colour or brown. White for me, is a symbol of a new start. New beginnings. Hope.’

‘Okay. Just email me if you change your mind,’ she says as she takes note of the colour I have chosen.

‘Sure,’ I say, knowing that I won’t be changing my mind.

I am certain the meeting is now over. I have survived yet another appointment. As taxing as they are, the appointments are important. I feel like they are preparing my mind for the change that is to come. If I think too much about the entire process, I wonder how much of a change to my life it will make.

Jane moves her chair backward and stands. ‘I’ll be back in a moment.’ She leaves the room.

I look at the desk at the CI implant that will be inserted under my scalp, a hole drilled in my skull, and the electrodes fed inside my cochear, and am struck with intense panic, my mind saying, ‘What are you doing? What. Are. You. Doing?’

I am filled with an incredible doubt that nearly cripples me. Do I really need a CI? My shadow, Meniere’s, is climbing the large glass windows like Spiderman and laughing. My tinnitus turns up the volume on a new noise, louder than the rest.

I close my eyes and focus on my good ear. Yes. It feels different. I am losing my hearing in my good ear. The Cochlear Implant is the right choice.

Jane returns with some paperwork. I quickly switch into a cool, calm, composed mode after my intense moment of panic.

‘I need to let you know that if you were going through the public health system, you wouldn’t be a candidate for a CI as your hearing in you right ear isn’t bad enough.’

My eyes widen for a moment. I feel like I am cheating the system with my private health insurance. What am I doing?

‘I need to talk to you about the bad things about the Cochlear Implant.

There’s bad things? I think.

‘Any residual hearing that is left in your left ear may no longer function.’

I frown. ‘But I can’t hear anything out of it. So, don’t the benefits outweigh that risk?’

Jane nods and smiles at me, then says, ‘For some recipients, their tinnitus gets worse.’

I nod. Can this really be true? My five noise of impossibly loud tinnitus, louder than anything in my life, no matter what my environment is, couldn’t get worse, could it? My tinnitus screams and shouts while doing the happy hoola dance. I flick it a backhand and it behaves.

Janes gives me a smile. ‘You are the person with the longest time of deafness to go through our clinic with activation.’ She seems kinda excited by that.

Great, I think. ‘I always like a challenge,’ I say. I change the subject. ‘The technology of the CI blows my mind. It’s such a great age to live in. A friend of mine lost his eye while surfboarding and told me that sight for the blind is being developed based on the cochlear technology.’

Jane smiles and nods her head. ‘There are companies working on a vestibular type of device for vertigo, based on the cochlear implant technology.’  

A vestibular pacemaker, I think. My skin prickles. Happiness for my fellow Menierian’s and other vertigo sufferers fills me until I overflow with joy. I can’t imagine a world without vertigo. But maybe it is getting closer.

Jane looks around her desk at her paperwork. ‘Okay – your surgery date is the 19th of December, and switch on of your Cochlear Implant is the 7th of January. I will organise for delivery of the Cochlear Implant to your surgeon and then everything is good to go. Any questions?’

I sit for a moment in silence. My shadow, Meniere’s, anxiety and tinnitus all fold their arms and look at me. ‘You have covered everything exceptionally well. I don’t have any questions.’

We both stand and leave the room. This is really happening.

Claire smiles at me when I enter the reception room. We walk to the car and she tells me a story about an old lady who kept staring at her. The old lady finally spoke up. ‘What are you doing on your phone?’

‘I’m reading the news,’ Claire had said.

The old lady nodded and said to Claire, ‘I was on a bus with my friend. We were the only ones without phones. The bus driver said over the speaker, “If you don’t put away your phones, I am going to pull the bus over and stop”.’

Claire said to me, ‘I find that hard to believe.’ We laughed.

Next appointment – Wednesday, 27th November – balance therapy