My Hearing Addiction

February 11, 2020.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.

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.

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.

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?

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!

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.

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 😊

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.

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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.

Learning to Hear

February 2, 2020.Reading time 7 minutes.

Fatigue
/fəˈtiːɡ/
noun
noun: fatigue; plural noun: fatigues
1.
extreme tiredness resulting from mental or physical exertion or illness.

December 19, 2019, I had Cochlear Implant surgery. On the 9th of January, 2020, my Cochlear Implant was “activated”. My world of deafness, including the five roaring noises of tinnitus changed. I could hear again for the first time in 15 years!

My cochlear audiologist, Jane, warned me, ‘You will have mental fatigue from hearing again with your left cochlear.’

Yeah nah, I thought. I’ve had the repugnant, revolting, repulsive Meniere’s disease for 25 years now, three children and a teaching workload. I know exactly what mental and physical fatigue is like. The simple act of hearing again will leave me fatigued? I doubt it!

Yeah Nah. Australian slang for no.

I enter the outside world. Reality. I’m no longer safe and comfortable in the confines of the quiet audiologist’s office, where Jane’s reassuring smiles, encouragement and support, wrap me like a warm blanket on a freezing winter’s night.

My eyes widen. It’s so NOISY! I hear EVERYTHING! But not the sounds of normal hearing, but of cochlear implant hearing, newly activated: chipmunk voices, robotic representations of every sound my 22 electrodes can feed into my auditory nerve. I am told that what I hear now, is not what I will hear as I continue to attend “mapping” sessions. Sounds will become more “normal-ish”, like what I hear with my right ear.

After 10 hours of wearing my processor, I am fatigued. Like a flat battery.
Nah Yeah. Yes. Jane was right. Again.

My cochlear audiologist, Jane, explained, ‘It’s like you’re a baby again. You hear absolutely everything. For your left hearing centre in your brain, every noise is new, and it’s working hard to work out whether to file the sound as an important sound, or background sound, that it doesn’t have to pay attention to. And the two hemispheres of your brain are not working together, yet. But they will.’

Creative background, the human brain on a blue background, the hemisphere is responsible for logic, and responsible for creativity. different hemispheres of the brain, 3D illustration, 3D render — source 123rf

She continued. ‘When you lost your hearing 15 years ago, your brain re-used that area for something else, and now that it is stimulated again with hearing, your brain is madly reorganising what parts of your brain are used for what. It is also accessing your auditory memories to match up to what you are hearing now.’

WOW! Mind blown. Not only by the fact that I can hear again, but by the knowledge that the brain has a design and intelligence that is beyond human understanding.

My cochlear implant journey has been a road filled with new learnings, revelations and knowledge. My erudite self is soaking up anything and everything about hearing, the cochlear and the brain. The more I learn, the more I realise what an amazing piece of architecture our brain is, one that cannot be replicated. It’s complexity and control of our bodies are both extraordinary and intriguing.

When Jane was talking about my brain reorganising, she was talking about brain plasticity, or neuroplasticity, which I was already familiar with from having to relearn my balance after having my balance cells destroyed in my left ear to stop the horrendous, violent, vertigo of Meniere’s disease.

“Neuroplasticity or brain plasticity, is defined as the ability of the nervous system to change its activity in response to intrinsic or extrinsic stimuli by reorganizing its structure, functions, or connections. A fundamental property of neurons is their ability to modify the strength and efficacy of synaptic transmission through a diverse number of activity-dependent mechanisms, typically referred as synaptic plasticity”

https://www.physio-pedia.com/Neuroplasticity

Principles of neuroplasticity

The brain wastes nothing…

So, my left hearing centre is like a baby again. It’s got me thinking. If I was a baby again, would I choose the same path in life. For instance, if I didn’t excel in sport, and I didn’t receive a head trauma just in front of my left ear that I believe caused my Meniere’s, would I still have Meniere’s disease in my lifetime? Would I still be me?

Next blog – Learning to Hear is like Learning to Read

(Dip T., B Ed., Author, Artist, Teacher, Tea Ninja, Chocoholic, Papercut Survivor)

Julieann Wallace is a bestselling 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.