‘Tis the Season to be … anxious …

December 5, 2021.Reading time 10 minutes.

I love Christmas. I love the childlike, contagious joy. I love the happy, and sometimes emotive music. I love the delicious baking aromas dancing through the house. I love the colourful decorations, the shiny baubles a grand temptation for our family cat and mini dachshund.

But, I don’t like the work gatherings. Three in five days this year.

I dislike not being able to strategically choose where to sit where I know I will have a better chance to hear to participate in conversations. I struggle with the unknown event planner sitting me at a table where conversations are bouncing around me, left and right, behind, in front, and back and forth, sometimes words heard, sometimes not.

I loathe the loud noise surrounding me, as I try to tune into the drowned-out conversations, the excess noise competing with the limited hearing in my good ear and it’s hyperacusis, and my cochlear implant in my Meniere’s ear.

I grapple with the embarrassment of asking someone to repeat themselves. Once. Twice. Sometimes three times.

And I deplore feeling like a fake, pretending to be a normal person who is perfectly happy, like everyone else seems to be as they enjoy every moment, while I sit there as a wobbling pool of anxiety that makes me want to flee from the room.

I hate being an observer, looking for who is talking … the unremitting, tiresome watching … watching how other people are reacting to what is being said that I cannot hear properly. Should I fake smile now? Should I pretend to laugh now? Should I look crestfallen now? Should I shake my head from side to side like others now? Should I nod, now?

I despise being the copycat, and the battle of trying to fit in.

I hate … how utterly exhausting it is.

And I resent how it makes me feel. Like I’m not good enough. Like I’m an add on. Like the others are just being polite to me.

I hate what Meniere’s has done to me. I feel like I am living in a world where I don’t belong. A misfit.

I feel like I am a spectator to a life that is full of colour, while my shadow, Meniere’s, drains the colour from my life.

And then I feel disappointed in myself.

I should be thankful that my vertigo was destroyed by gentamicin, also destroying my balance and having to relearn to walk using my eyesight. I should be thankful that I have a cochlear implant. I should be leaping with joy that I can still teach in classrooms of teenagers, guiding them, helping them to grow their wings so they can be whatever they want to be in life.

But, my work friends and colleagues (whom I love and adore) don’t know how exhausting it is trying to fit in with their photobooths, their conversations in a loud background environment, their misbelief that perhaps my life is as normal as theirs, when in fact my struggle is exhausting, riddled with the poison of life destroying anxiety.

They don’t know how, when I go home, I have to pick up the pieces of me that are breaking off to the reality that I feel like I don’t fit in. That I will never be normal. Like them.

They don’t see me as I melt into a pool of self-pity.

How do I ask my generous employer for an exemption from the compulsory celebratory gatherings? How do I explain I don’t want to go to the extravagant, lavish, work celebrations to stop the physical, emotional, and psychological fallout? How do I explain these social gatherings make me want to run from the room, or sink into a corner where I can be invisible? How do I explain that I don’t want to go so I don’t have to suffer my own personal after-celebration post-mortem of overthinking, and tears? How do I explain that I don’t want to go, to stop me waking at 3am, hating being me, and hating my shadow, Meniere’s.

And then I think … the person who others think I am, the version of me they see at work, is entirely my fault. I’m exceptional at covering up my disability and my invisible illness. 26 years of Meniere’s. I’ve had a lot of practice. They can’t see me working hard to keep my balance. They can’t see me working hard to have a conversation with them. They don’t see my cochlear implant, hiding beneath my hair.

And then I remember…

I am a survivor. A fighter. What I have been through with Meniere’s disease is heartbreaking. Devastating. Life changing.

I suck in a breath and hold back my tears …

But still. I so hate this. I so hate what Meniere’s has done to me, and what is has done, and is doing, to others.

I think back to the advice I generously give to others, reminding myself to use it –

Change your mindset from negative to positive.

Look for the small triumphs.

Celebrate the small wins.

I’ve done it a thousand times before. And I must continue doing it …

Well, I did do it! I survived three social celebrations in five days, as physically exhausting as it was. I’m thankful to be invited. It would be worse to be left out. I connected with another work colleague who is deaf in one ear. I asked her how she was going with all the noise, thinking how blessed I am to have a cochlear implant. I watched as normal hearing people struggled to hear conversations, me sometimes hearing the conversation better than them with my Cochlear Implant! And I had very patient friends and colleagues who did repeat words for me, and understood. And I thank and honour them for their kindness.

If you’re reading this, finding yourself nodding your head with perfect understanding, and even perhaps, tears falling, remember, if you are going to a social event, you can do it! I totally get what you are going through. Look for the helpers. Look for the good things that happen. And … forgive yourself. Forgive others, for they do not understand. Be kind to yourself – intentionally, extravagantly, unconditionally.

Good things are coming … I know it.

Julieann Wallace is a multi-published author and artist. When she is not disappearing into her imaginary worlds as Julieann Wallace – children’s author, or as Amelia Grace – fiction novelist, she is working as a secondary teacher. Julieann’s 7th novel with a main character with Meniere’s disease—‘The Colour of Broken’—written under her pen name of Amelia Grace, was #1 on Amazon in its category a number of times, and was longlisted to be made into a movie or TV series by Screen Queensland, Australia. She donates profits from her books to Macquarie University, where they are researching Meniere’s disease to find a cure. Julieann is a self-confessed tea ninja and Cadbury chocoholic, has a passion for music and art, and tries not to scare her cat, Claude Monet, with her terrible cello playing.

Purchase ‘The Colour of Broken’: print book & ebook or audiobook (narrated by the incredible Heather Davies)

Purchase ‘All the Colours Above’: print book & ebook

Purchase ‘Daily Meniere’s Journal – 3 month’: print book

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It Did Change My Life

January 13, 2020.Reading time 29 minutes.

Cochlear Implant Activation, 9^th January

The alarm is sounding. It’s 6am. But it doesn’t wake me, my husband does. I am lying on my “good’ hearing ear, so I hear nothing. He touches me to wake me and I struggle to open my eyes. I’m tired. I’m so tired. I haven’t slept well because it’s hot and humid. The night-time low was 24 degrees Celsius.

I roll over and vertigo hits me, followed by nausea.

Great, I think, as my world spins. I hold still and the room stops spinning and the nausea goes. BPPV. A misalignment of the crystals in the inner ear. I know I can do the Epley Manoeuvre to stop it. But I don’t want to do it until I check with my Cochlear Surgeon in 4 weeks’ time.

I breathe a messy breath through my lips and sit up. First, I focus on the wall to check that my world is not spinning again, then stand slowly, to ascertain whether my balance feels okay. I remember it’s Cochlear activation day. But I’m so tired. Activation can’t be on a day when I am exhausted before the day begins. It didn’t happen that way in my imagination when I looked forward to hearing again. I sigh.

I push forward with my morning routine. Breakfast is low key. Toast with peanut butter and a cup of tea. Anxiety joins my shadow, Meniere’s, and me at the table. The three of us together again. I frown. Why do I feel anxious about activation, but not about the two-hour surgery where they drilled a hole in my skull three weeks ago?

I stop before the door before we leave to drive to the city. I feel safe here, behind the closed door. Comfortable. Once I open that door, my world is going to change. I take a deep breath, place my hand on the doorknob and turn it.

I step out into my future.

My husband and I arrive early for the appointment. We sit in the waiting room where the perfectly arranged magazines adorn the table, that have been painstakingly presented. When my husband takes a magazine, flips through it and plops it back on the table, I can’t help but to straighten it up so it is like the others.

I look up when I think I hear my name called.

Jane, my cochlear audiologist greets me with a smile. The universal language that puts you at ease. Anxiety, Tinnitus, Deafness, My Shadow, Meniere’s, my husband, and I follow her to her office. We all sit down, except for my shadow, Meniere’s. He’s jumping up at the window overlooking the city, and sliding down with a giggle. I shake my head at him.

‘Welcome back,’ Jane says. ‘How did the surgery go?’

‘Good,’ I say. ‘I’ve had no pain, no major vertigo, just little spins when I roll over. BPPV. I can fix that with the Epley Manoeuvre, but I want to wait until I see my surgeon in a few weeks.’

Jane shakes her head. ‘The little spins may not be BPPV. Sometimes drilling the hole in your skull can upset your inner ear and cause that. It will get better.’

Oh. I am surprised by that information. I smile. ‘The surgeon managed to get the 22 electrodes all the way in. He was really happy with that.’

‘Wonderful. Plus you have two earth electrodes in there as well.’ Immediately my mind turns to the memory of me out in the storm the other day. I had rushed inside in case my implant attracted lightning.

Then, on researching lightning and Cochlear Implants, I am no more likely to be struck by lightning than anyone else. Phew!

Jane turns to my husband and shows him what has been implanted into the cochlear of my inner ear. ‘The electrodes are 1/5 of the width of a hair strand, in size.’ My husband’s jaw drops to the floor. He shakes his head. It’s hard to comprehend.

‘Okay. Are you ready for today?’ she asks.

I nod, and see Anxiety double his size beside me. I want to grab a pen and stabbed him so he farts all the air out of him. My shadow, Meniere’s, sits in the corner and lowers his head. Tinnitus is doing pirouettes in a tutu. My life really is a circus!

Jane places the external hardware over my ear, attaches the transmitting coil to the magnet that sits under my skin on my scalp, all the while explaining how it works. The enthusiasm in her voice tells me how much she loves her job. She is super excited about switching on my Cochlear Implant.

Once the processor and transmitter are in place, Jane sits on her chair. I’m knotting my fingers together as my skin burns. I frown. I can’t hear a thing in my Meniere’s ear. Nothing has changed. My tinnitus is still screaming at me.

She attaches a wire to the speech processor around my ear and taps a few keys on the computer. She smiles and says all the electrodes are looking good. Then she taps another key and I still. My heart starts to race and my eyes widen. I can hear a few crackles and pops.

‘Can you hear this, Julieann?’ she asks in her English accented voice.

Three beeps sound in my deaf ear. Then another three at a different pitch, and another three.

‘Yes,’ I say, my voice cracking. I cover my eyes as tears fall. I can’t stop from crying.

‘I can hear that,’ I add.

‘Good,’ she says and smiles. ‘Are you okay? There’s tissues behind you.’

‘Yes,’ I squeak. I grab a tissue and look over at my husband. His eyes are red-rimmed and wet. He has been a part of my journey. Twenty-five years of being a spectator to my incurable Meniere’s disease, where he could do absolutely nothing to help me, except clean out the vomit bucket time after time after time after I had vomited violently whilst spinning, or attending the emergency room when I was so dehydrated from vomiting that it was dangerous to my health, or when we thought the violent spinning wouldn’t end. We’ve been married for 31 years. He knows exactly what physical, emotional and psychological toll it has taken on me. He has seen me during my darkest days.

Yet, I spared him from witnessing the darkest of dark days when I no longer wanted to be here, when I wasn’t the colour of grey with an “e”, nor the colour of gray with an “a”, but the colour of black.

From my novel – ‘The Colour of Broken’ – Yolande, the main character is sitting in the chair, talking to her psychologist …

‘What colour are you?’

I took a deep breath and twisted my fingers together. My stomach tightened. I cleared my throat. ‘The colour of broken …’

Dr Jones was silent.

I stopped breathing when anxiety rose inside me like a wall of lava, about to incinerate me. It was freaking me out that she now knew this about me, and that she had not reacted to the description of my colour.

‘And what colour would that be?’ she finally asked.

I breathed out through my lips, slowly, steadily, counting to five in my head. ‘Gray with an “a”.’

‘There’s a difference?’

‘Oh, yes. Grey with an “e” is very different to gray with an “a”.’

‘How?’

‘Grey with an “e” is like the rain clouds. It’s melancholy, but an enjoyable melancholy that builds up until it releases, and then it’s like petrichor, the smell of the rain after warm, dry weather. Satisfying. Grey with an “e” is also when deep thought, philosophy and ponderings happen. Everyone should experience grey with an “e”, it helps to discover parts of you that you never knew existed, and it can vanish without leaving a bitter aftertaste.’

‘Tell me about gray with an “a”.’

I looked down at my knotted hands. ‘Gray with an “a” is … never enjoyable—it’s a very dark gray. It’s self-judgement, doom and gloom, forever hanging around and within. It wants to drag you into the dark abyss of the colour black, that absorbs all colours … the colour of self-condemnation, the colour of depression, the colour of death of the physical body.’

‘But not the spiritual body?’

‘No.’ I didn’t want to add any more to this conversation. It was painful to talk about.
‘So, me being a supposedly normal person, could I see your gray with an “a”?’
‘No. Because I mask it. And my gray with an “a” is not a plain gray with an “a”. It’s a crackled dark gray, with other colours that seep out … sometimes.’

‘What colours would they be?’

‘Drips of red for anger … specks of black—’ for self-hate, ‘—for my secret, blushes of pink for my love for Mia and my family, and explosions of turquoise that screams at me to love myself …’

‘That’s very insightful, Yolande. It’s highly intuitive. I’m curious … when you look at me, what colour am I?’

I hesitated before I spoke. I never told anyone the colour I had appointed to them for fear of them running from me. But Dr Jones, she was different, she would understand …

‘You are … magenta,’ I finally said. ‘It’s the colour of a person who helps to construct harmony and balance in life, hope and aspiration for a better world—mentally and emotionally,’ I said, and held my breath, waiting for her reaction.

She raised her eyebrows at me. ‘That’s an amazing gift to have in your mind toolbox, Yolande. Does it ever lie to you?’

Jane says, ‘I’m going to switch on each of the electrodes, one by one. Tap on the table when you hear the beeps.’

And so it begins. As I hear beeps, and tap on the table, hope rises in me like a flower blooming, facing its sun. I hear 21 out of 22 electrodes. Jane is ecstatic.

I am in shock and a tears trickles down my face. I can hear!

She looks at me and smiles. ‘Do you need a break?’

‘No,’ I say. I am beyond fascinated. In awe. What an age to live in with medical science, discoveries and inventions.

‘Let’s try some speech,’ she says. She taps a few more keys, and suddenly there are words in my Cochlear Implanted ear.

I start crying, wiping a thousand tears from my cheeks. ‘I can hear what you are saying,’ I sob. ‘But you sound like you have been inhaling helium!’

Jane’s face lights up with a smile. ‘You can! That is so wonderful!’ She is looking at me with a contagious joy.

She continues talking. I hear her chipmunk voice, but I can’t understand her. She keeps talking, and with my good ear, I understand that, as she keeps talking for another 10 minutes, my brain will start understanding better. She says the hearing part of the left side of my brain has been used for some other processes since I lost my hearing. And now it is shuffling, trying to find my speech and sound memories, to make sense of what it is hearing. It is using auditory pathways and memories, and must work at a higher level to pull together the information to have bi-normal hearing. The brain must code all the information coming in.

And then suddenly, like a light has been turned on, I can understand much of what she is saying, as words. Not all of them, but quite a few. For the words I don’t get, my mind fills in the blanks with words to match the meaning of what she is saying.

I am speechless.

She turns to my husband. ‘Say something to Julieann.’

I look at him and smile.

He smiles back. I see his lips move. I wait for the sound of his chipmunk voice. I swallow and my skin burns. His voice doesn’t even register as a chipmunk. I can’t hear his voice at all!

His eyes widen in panic.

Jane jumps in quickly in a calm and encouraging voice. ‘That’s okay. It will happen.’

Jane reaches over and pulls out a foam ear plug and puts it firmly into my good ear.

Then she places a hearing muff over my good ear.

I have lost all hearing that I have been relying on to hear and understand conversation.

Jane continues talking like we are in a normal everyday conversation. I stare at her, trying to get what she is saying. It is so hard. Her voice is sound, but not words.

I focus harder, and slowly some of the sounds become words.

She stops and asks me a question. I stare at her blankly. I am trying to figure out what she has asked. I am trying to piece together what words I understood of the question, and with the missing words, I am working on using any visual cues from what she is doing, plus I am trying to read her lips.

Finally, I answer with a smile. ‘Yes. I can hear you. And your speech is starting to sound like words.’

‘Well done!’ she says. And I understand her chipmunk voice perfectly. She then explains about the delay happening in my brain with the speech and understanding. She knows how hard I am working to try and understand the new input into my brain.

‘Can you hear this?’ she rattles a piece of paper in front of her.

‘Yes,’ I say, although it doesn’t sound like paper, but an unrecognisable noise.

She stands and goes behind me and I hear another noise. I nod my head. I can hear it. She shows me a tissue that she rubbed in her palms. I am absolutely gobsmacked. She asks me to repeat words. I get most of them right, guessing some of them. Then Jane covers her mouth so I can’t read her lips. I hear her, but not clearly enough and get some of the words wrong.

She turns to my husband and asks him to speak to me again, and he does.

I still can’t understand him, at all.

She tells him to slow down and breaks his sentences into chunks, and not to run the words together.

He tries again.

I smile at him and say, ‘No. You don’t sound like Darth Vader.’ He smiles. He’s happy now.

Jane grins. She goes through the Cochlear Australia backpack that is mine to keep. It is filled with bits and pieces for care of my Cochlear Implant external hardware, plus other bits and pieces and chargers and batteries and paraphernalia. She shows me how to use everything, and then asks me to do the same. It fits in perfectly with my teaching philosophy.

After two hours of intense concentration, she asks in her chipmunk voice, ‘Is there anything you want to ask me before you leave today?’

I think for a moment. I’ve had way too much information overload. My brain is working double time and I am tired. ‘Is it okay to wear my new hearing to the Big Bash Cricket tonight?’

Jane laughs. ‘Yes. If you like. It will be very noisy though.’

My husband and I leave her office, take the elevator and walk out into the real world. I stop for a moment, wondering if I can hold my emotions together. The impact of activation has been overwhelming. Two hours ago I had walked into Jane’s office deaf in one ear. Now I walk out, hearing with two ears.

The thought is profound.

My husband looks at me. ‘Are you okay?’ His eyebrows are pulled together. For a moment, I wonder how hard this has been on him?

‘Yes.’ I blink away tears, then start to walk again.

The world is noisy. Terribly noisy. I hear everything in a tinny, echoing, chipmunk way. My brain is detecting two lots of hearing with everything – my deaf, now hearing Meniere’s ear, hearing conversations of chipmunk voices, and chipmunk city noises of its own while I listen with my good ear to the same thing with normal hearing. The two sides of my brain haven’t synced yet. They are acting independently of each other.

I laugh to myself. How privileged am I to be able to experience this oddity? My heart overflows with gratitude.

I take confident steps into my new normal. Into my future. Bilateral hearing. Something I haven’t had for 15 years. Something I thought would be impossible.

Before I go to bed, I remove the external hardware. Immediately my ear feels full and profoundly deaf. My tinnitus returns. But that’s okay. That’s my other normal. Two of me.

I reflect on my most extraordinary day – five times I have stilled at big moments:

When the Cochlear Implant was activated and I could hear! My mind was blown!
When I heard music. I cried so hard my husband wanted to pull over the car to make sure I was okay.
I located the direction of a sound. I haven’t been able to find where a sound is coming from for 15 years. This ramifications of this for me in the classroom will change my stress level as I teach.
I heard a man’s lower chipmunk voice while waiting to catch the bus after the cricket …

The cricket … I think back to the Big Bash Cricket and smile. On entry, I was pulled aside for a security check, the metal detector waved over and around me – it always happens to me at airports too. It’s become a running joke with my family. I held my breath, wondering whether my Cochlear Implant would set the detector off, but it didn’t.

And Jane was right. The Big Bash was very noisy. But it was so worth it. And I’m taking marshmallows to toast in the flame next time!

And number 5 … I entered our walk-in wardrobe. As I stood there trying to decide what to wear to the cricket, I froze. Something was wrong. Very wrong. My heart raced and I started to panic. I couldn’t hear anything. Not even from my “good” ear. I felt for the Cochlear Implant external hardware. It was still there. I ran my hands over my arms to make sure I was still me, and I wasn’t dying – seriously!

Something wasn’t right.

I could hear absolutely nothing. Nothing! I spoke to check that the Cochlear Implant was still working. Maybe the power pack had gone flat? I heard my own voice as well as my chipmunk voice. Two of me. I stopped and listened again in the stillness of my walk-in wardrobe.

There was silence. Utter. Beautiful. Silence. No tinnitus. After a quarter of a century. I closed my eyes and let my tears fall, covered my mouth and ugly cried.

The gift of hearing. I am so beyond thankful. I have no words to explain what it feels like to have the Cochlear Implant activated and to hear again. My faith. Health professionals. Family. Support of friends and Facebook groups. It takes a tribe.

The Cochlear Implant has changed my life. On activation. It has made the impossible, possible. Meniere’s disease may not be curable, yet, but we can take back from Meniere’s what is has taken from us.

Next blog – learning to hear again …

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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A Meniere's Art Series 7 illustrations without text, with text, with headings Freed

A Meniere's Art Series 7 illustrations without text, with text, with headings Freed2

A Meniere's Art Series 7 illustrations without text, with text, with headings Freed3

A Meniere's Art Series 7 illustrations without text, with text, with headings Freed4

9780648424451-Meniere's Journal 14.01.20 2020_cov.indd

9780648424437-Monthly Meniere's Journal 14 hc_cov.indd

Meniere’s Journals are available for pre-order at Lilly Pilly Publishing & Amazon (30 Jan. 2020). Profits are donated from ‘The Colour of Broken’ and the Journals to Meniere’s research 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 #10

December 30, 2019.Reading time 7 minutes.

December 16^th. Three days before the Cochlear Implant surgery…

I am engulfed by the feeling of peace. It is flowing through me, around me.

I should be happy. But this sense, three days away from my Cochlear Implant surgery worries me. It confuses me. Where has my friend, Anxiety, gone? My shadow, Meniere’s, looks at me and shrugs.

Some people say anxiety is an illness. A mental health condition. A disorder. A disability. But I have never seen it that way. Anxiety, for me, is a super ability. It allows me to look at a situation, and see every possible scenario where something could go wrong, and allows me to have a plan in place in my head to react if something does go wrong. Even when it is paralysing and jumps out of nowhere while you try to work out what triggered it, going through the motions of a panic attack. It can be so irrational.

In fact, I feel so peaceful, that the reality that I am having surgery to insert bionics into my head does not phase me at all. It’s surreal, like a dream that will not happen. It’s no threat to my being. However, it is so disturbing, that again I am questioning whether I should be getting a Cochlear Implant. I’m okay with hearing with one ear, aren’t I? I don’t in fact need a Cochlear Implant. My life is floating along on calm waters …

What has changed?

In the middle of the year I was hit with the truth that I was losing hearing in my good ear. I had been living in denial of the results of a hearing test two years prior. I was struggling to hear students at school, and constantly on high alert using my vision to pick up on any nuances, facial expressions, non-verbal behaviours that would tell me that I had misheard and misunderstood. This combination sent me into a downward spiral with a decision made in an instant to get a cochlear implant, so that I have some sort of hearing in my future.

But now, I am on school holidays. I happily disappear into my imagination all the time where I never have to rely on my hearing. I am having one-on-one conversations with my family, facing them, and their voices are not competing with background noise.

Life is good.

December 18^th. One day before the Cochlear Implant surgery…

I leave the house with a bounce in my step, my shadow, Meniere’s, follows close behind. I am meeting two dear friends for lunch.

The moment we see each other we smile. The universal language that puts you at ease. I sit at a rectangular table, a friend on either side with me. My shadow, Meniere’s, sits opposite me with a smirk on his face, knowing that I have sat in the wrong place, and I won’t be able to hear my friend on the left. I glare at my shadow, Meniere’s. He is not always right!

After 5 minutes, I ask my friend on my left to change seats with me so I can hear better. As I stand, I scowl at my shadow, Meniere’s. He is always right. And I am always stubborn.

Halfway through our lunch, I sit back. I have mental fatigue from trying to hear our conversations, from reading facial cues, lips, and gestures, but not well enough the hear the conversation with 100% confidence. My friend’s voices are in competition with loud background noise, and my even louder tinnitus. Two times, a waiter has appeared on my left, and I had no idea that he was standing there asking me a question. By the third time, my friend told me he was approaching so I was aware.

I feel like I am on the outside. A spectator. I withdraw inside myself a little and sigh, but stay actively engaged in what conversation I can hear, and join the conversation only when I am 100% confident I have understood what they are talking about. There is no doubt. I do need a cochlear implant. Without it, I will continue on the spiral to being a social recluse, watching life go by.

Thank goodness for the perfect timing of friends. Without that lunch with my two dear friends, I would have been left forever wondering whether getting a Cochlear Implant was the right thing to do.

Next … surgery day.

About this blog …

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 #9

November 28, 2019.Reading time 10 minutes.

Wednesday, 27th November – balance therapy

Balance

/ˈbal(ə)ns/

noun: balance; plural noun: balances

1. an even distribution of weight enabling someone or something to remain upright and steady.

In 2004 I made a conscious decision to have my balance cells destroyed. I couldn’t do the horrendous, unpredictable, debilitating, violent, torturous, four-five hours of insane vertiginous spinning and nausea and vomiting and staring at one focus spot for the entire four-five hours anymore. I was more than done. So when my ENT offered to inject gentamicin into my middle ear to kill off the balance cells, halting the vertigo, I didn’t think twice.

Was the gentamicin my first port of call? Absolutely not. I had already had Meniere’s disease for 9 years and tried:

* Low salt diet

* Diet elimination

* Stemetil

* Diuretic

* Serc

* Sound therapy

* Acupuncture

* Prednisone

* Grommet

* Gentamicin. The gentamicin worked. One shot injected in through my grommet with some bicarbonate of soda and sterile water mixed with it to make it penetrate better.

The procedure took place at my ENT’s procedure room in the city. I lied on my right side while he injected the concoction in through my grommet.

‘Isn’t that hurting?’ he had asked me as he infused the mixture into my middle ear.

‘Yes,’ I had said, ‘but I am envisaging it destroying the Meniere’s in my middle ear. It’s a mind visualisation technique I taught myself when I was young, when I had growing pains.’

I remained on my right side, left ear facing the ceiling for 20 minutes after the procedure, then went home, where I went to bed and rolled onto my right side to keep my left ear up. I slept for 2 hours.

The next day I had bouncy vision when I walked. It has a term – oscillopsia. And was a side effect of having my balance cells destroyed. It was a good sign that the gentamicin was working, my ENT had said.

https://www.healthline.com/health/oscillopsia

Three weeks later I was back teaching full-time, learning to trust that I wouldn’t have anymore vertigo attacks. Fifteen years later, I am still vertigo free.

Choosing to destroy my balance cells to stop the vertigo was not a hard decision. Meniere’s disease had total control on my life, and I wanted it back. There was a risk of losing all of my hearing, but that was a preferred choice to suffering through the torturous vertigo anymore. The gentamicin stopped the vertigo.

I gained quality of life again – socialising, working, independence, driving, and slowly became more confident in my life.

I lost a little of my hearing, but not a lot.

If my vertigo returned, would I do it again?

Yes.

When I joined global Meniere’s groups, I discovered that others who had had this procedure done, were having balance therapy. I was shocked that there was even a thing called balance therapy. When I had my procedure done in 2004, balance therapy didn’t exist where I lived. I had to learn to walk again, finding my new balance, learning my limitations as I went. No help.

Today, I sit in the reception of the Vestibular Therapist’s office, with a referral from my Cochlear Implant surgeon.

Mandy greets me with a smile. The universal language that puts you at ease. Curiosity, and my shadow, Meniere’s, follow her to her office. I sit on a chair and she questions me about my Meniere’s history, writing notes.

‘I’m an concerned about your imbalance after 15 years. You should not have that deficit anymore. It may point to another problem you have. Do you have Meniere’s in your right ear,’ she asks.

‘No,’ I say. Anxiety joins us in the room.

She frowns at me. ‘Let’s do some tests and see what is going on.’

She asks me to balance with my eyes closed for 30 seconds. I pass this test. 😊

She asks me to walk across the room, heel to toe, heel to toe, heel to toe. I fail miserably. Two steps and I fall over. ☹

Then she asks me to look at the letter “N” on the wall, and moves my head left to right over and over and over, quickly, then asks me whether the letter moves. Yes. She repeats that test, but moves my head up and down over and over and over, quickly, asking whether the letter “N” moves. Yes.

Mandy sits close to me on my left. I have to sit at a 45-degree angle to her and focus on her nose. She then moves my head left to right over and over and over again, quickly. ‘That’s not too bad,’ she says.

She repeats the test, but this time she sits on my right side. I try to keep my focus on her nose as she moves my head left to right over and over and over again, quickly. I can not keep my focus on her nose at all. ‘Yes. That’s the gentamicin damage in your left ear,’ she says.

I sit on a massage table.

Mandy places some goggles over my eyes. She wants to see if I have Benign paroxysmal positional vertigo (BPPV). She does the Epley manoeuvre. No vertigo or eye movement evident.

Mandy stands and talks me through some vestibular exercises for neuro-plasticity – the brain relearning balance. I cannot express how happy I am to get these exercises. They will help me no end.

Except, each of the exercises make me feel insanely nauseous. I blow a controlled breath through my lips. I’m an expert at it.

‘Do you want to stop?’ she asks me during each exercise.

‘No,’ I say. ‘I can do this.’ And I get through to the end.

‘Can I take stemetil when I feel nauseous with the exercises?’ I ask.

‘No,’ she says. ‘It’s a vestibular suppressant, and your brain won’t learn the new balance pathways and desensitisation.’

‘What about Serc?’ I ask.

‘No. Don’t take Serc either,’ she says.

‘But it is only supposed to increase the blood floor in the inner ear,’ I say.

She shook her head. ‘No. That’s what they want you to believe. It a vestibular suppressant, like stemetil – it’s good for Meniere’s, but not other vestibular conditions.’

‘Some doctors say it does nothing for Meniere’s,’ I say, frowning, recalling how my own ENT and the Cochlear Implant ENT scoffed when I mentioned Serc. I wondered why the makers of Serc would say it increases blood flow, while the vestibular therapist, who specialises in vestibular retraining says it’s a suppressant. I know for a fact that many Meniere’s people say Serc keeps their vertigo at bay.

‘From the conferences I have attended, it does indeed work for many Meniere’s patients, not all though,’ she adds. Yeah, I was one who it didn’t work for, I think.

I leave her vestibular therapy room, which is in a really old house that is not level. I catch my balance as I walk through it. My shadow, Meniere’s, laughs at me. I am armed with vestibular exercises, and an appointment for next week.

I have now completed all of my necessary Cochlear Implant work-up appointments.

Next stop, the Cochlear Implant. December 19^th.

It Will Change Your Life #7

November 21, 2019.Reading time 16 minutes.

Monday 18^th November – Psychology Appointment

I see the psychologist today.

How does that make me feel?

When I first started the Cochlear Implant process, I was informed of the CI ‘Team’:

* ENT. done

* Audiologist. done

* Surgeon. done

* Psychologist …

* Cochlear Audiologist …

Balance Rehabilitation – an added one just for me –– only because I have had all my balance cells destroyed.

I’m working my way through the list.

I arrive for my appointment ten minutes early, laughing on the inside. My weird sense of humour is getting the better of me. In my best-selling novel, ‘The Colour of Broken’, the main character, Andi, visits her psychologist regularly. I did a considerable amount of research to ensure the psychologist in my novel was asking the right questions. I already know what to expect.

I open the door and scan the waiting room. I have never seen so many artworks on medical walls. I’m in an artists’ paradise.

I’m asked to fill out some paperwork, and I promptly complete it.

Then I have a moment of downtime and the realisation hits me – the psychologist holds a power over me. He is a cog in the wheel of the cochlear implant team who can allow or deny my access to the hearing technology. He will make a judgement call by the end of the session. I sigh, and remind myself, ‘it’s part of the journey’, and the Cochlear Team want to ensure my mental wellness.

I open my iPad and work on a Meniere’s illustration I have been creating. It is full of symbolism. The buzzing bee for tinnitus. The vertigo flowers for vertigo, and the butterfly for loss of hearing, as most butterflies are deaf. The blue sky is a good coping day.

I change the backgrounds to add an oncoming vertigo attack.

I close my iPad. I soak in time like I have slowed it down. It feels like I have been here before, all because of my novel. It feels like a book paralleling real life.

(from “The Colour of Broken”)

I sat in the chair outside the psychologist’s office. I’m sure it had a permanent imprint of my butt on it. My mother’s hand was around my upper arm like a vice so I couldn’t run. She knew me well. Thank God. I didn’t want to be here, but I did. I needed to be here. Darkness had reached up to pull me under, yet again.

(me)

I sat in the chair outside the psychologist’s office. The seat was really comfy and I wiggled down into it. I was here by myself. I didn’t want to be here, but I had to. I needed to be here to prove that I was a suitable candidate for a Cochlear Implant.

(from “The Colour of Broken”)

‘Yolande.’ Dr Jones’s voice was comforting, like a warm childhood blankie and a mug of hot chocolate by the fireplace. My mother’s grip loosened on my arm and I stood, eyes focussed on the floor. I took slow steps into the office. The familiar office. I’d been here so often I was wondering when she’d ask me to pay rent.

Dr Jones put a light hand on my shoulder and led me to the couch. Usually she asked me whether I wanted to sit on the chair or lie on the couch. Today there was no such question. She knew me well. For a moment I wondered if psychologists ever saw a psychiatrist or psychologist themselves? Who did they go to when they had a problem?

(me)

‘Julieann.’ The psychologist’s voice was hard to hear, like listening to a voice through a wall. I stood, dropping my jacket and pen onto the floor, as per usual, picked them up, then took slow steps into the office. The unfamiliar office. It was smaller than I had imagined. The psychologist gestured to the black sofa with red and blue cushions, and told me to take a seat. I briefly wonder if he has already analysed my conscious choice about where to sit on the sofa. My shadow, Meniere’s, sits beside me, and looks the psychologist up and down. I gaze up at the artwork on the wall behind him and comment on the castle sitting on top of a mountain. It has dark undertones. I like it.

(from “The Colour of Broken”)

‘What brings you here today, Andi?’ Dr Jones asked, sitting beside me, so we weren’t facing each other.

‘The darkness within,’ I said, and sipped on some more tea. ‘And fear.’

‘Ah … good old Darius Darkness. Your friend. What is he trying to tell you?’

‘I deserve everything that happened. I almost believed him.But Darius is such a liar. He’s relentless at times.’

‘Well done, Andi. So, I’m assuming fear has jumped on board to weigh you down?’

‘Yes.’ I sipped on my tea. It warmed my throat and my stomach. I welcomed its warmth.

‘Fear of?’

‘Gram wants me to go to a garden party with a stranger to protect her bicycle. She told me not to wear my steel-capped boots.’

‘How does that make you feel?’

(me)

‘What brings you here today, Julieann?’ The psychologist asks, sitting opposite me, so we were facing each other.

I stop a smirk from appearing on my face, and think, he knows exactly why I am here. ‘The Cochlear Audiologist, the surgeon and the ENT,’ I rattle off, feeling like I am telling an accumulative story. I wished I had some tea to sip.

‘Ah, yes,’ he says. ‘Getting a cochlear implant will change your life. It’s my role is to make sure that you will be able to cope with the change.’

I nod.

‘How does getting a Cochlear Implant make you feel?’ he asks.

‘I … it …’ I look to the floor trying to find the right words. ‘I think it will make me feel like I have been released from the Meniere’s prison. Having an incurable disease – for anyone – is like feeling captive. You can’t leave. You’re never free.’

He nods his head as he writes furiously on his paper with a hot pink inked pen.

‘I think … it feels like … I might get a bit of the old me back, the me before I had Meniere’s disease,’ I add.

He nods and writes.

‘How does that make you feel?’

Silence. I don’t want to think back to before I was 30. I finally answer, ‘Scared.’

‘Why is that?’

‘It will push me out of my comfort zone. Sometimes I think people can get comfortable sitting within their disease, and use it as a type of crutch.’

He nods and writes.

His next questions are about my cochlear implant expectations, support people, then he encourages me to describe my life after I get a cochlear implant.

He talks about the importance of resilience, and wants to know what my strategies will be to help me get through it, and if somehow, the cochlear implantation isn’t what I think it will be.

His next question stops me in my tracks. ‘Tell me about your life before Meniere’s, and then during Meniere’s. I want to know what strategies you used to cope when you had active Meniere’s.

My voice trembles as I recount my life before Meniere’s. I never like reminiscing about what is was like being free of the beast. And I hate reminiscing about the very dark time in my life with active Meniere’s.

Tears. Stop.

I manage to keep them balancing on my eyelids.

I take a deep breath then I tell him I would wake up each day and look for the positives. Even the very small positives, like the colour of flowers and nature. Patting my dog. I tell him I write, and it helps me. It’s the only time I don’t hear the loud tinnitus. I tell him I have a published novel with a main character with Meniere’s to raise awareness and help others that has sold around 2000 copies. I tell him that I volunteer as a research subject when the Mind and Brain Centre at the University puts a call out for Meniere’s people. I tell him that I love art, and recently exhibited a series of 4 artworks for Meniere’s awareness, called ‘Captive’.

The psychologist is writing at a phenomenal rate. I wonder if he has his own shorthand. Then I wonder if he can always read his words afterward.

For a split second in time I want to say, ‘You’re using a pink pen. How does that make you feel?’ But I don’t. Instead I search my mind for the meaning of pink – “the colour pink is the colour of universal love of oneself and of others”. He is in the right profession.

He stops writing and looks at me. ‘You would make an interesting research subject with something psychologists have recently termed “post-traumatic growth”, where you can use all the negativity of what has happened to you and use in in a positive way.’

I half smile. I would have preferred not having an incurable disease in the first place. I want to tell him that I discovered “post-traumatic growth” myself, and didn’t need a psychologist to give me the strategy or the label. I want to say that realistically, humans have been “post-traumatic growth-ing” since the beginning of trauma. It’s one way we bring light back into our dark world.

The psychologist leans back in his chair. ‘My job now is to write a report and send it to the cochlear implant team. I will recommend that you are a suitable candidate for a cochlear implant, and that you have strategies that will help you cope with the change that is coming.’

I smile. ‘Thank you,’ I say, then pluck up the courage to comment on a piece of artwork the room. I know it is part of the ink blot test.

He smiles back. ‘It’s from Rorschach’s Ink Blot test. Then he takes me to the reception area and proudly shows me the Rorschach’s Ink Blot Test Collection – on a background of typed text, mounted and framed.

If Meniere’s disease was one of those ink blots, it would definitely be:

I leave the psychology appointment with a bounce in my step. The Cochlear Implant is getting closer to becoming a reality.

I have also finalised the design of my Meniere’s artwork in my mind that I was working on before the meeting:

Next appointment – Wednesday 20^th November – final expectations with the cochlear audiologist.

If you would like to read the full excerpt from Chapter 12 of “The Colour of Broken” click here. Scroll down the new page to find Chapter 12.

About this blog …

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 #3

November 12, 2019.Reading time 14 minutes.

Monday morning 28.10.19

Mum and Dad sit on the garden seat waiting for me.

I’m having my Cochlear Implant assessment today. This time I have to drive to the city. Except I can’t drive there by myself with 100% confidence. There’s too much visual movement. I don’t know which direction sound is coming from. Moving my head from side to side makes me nauseous … it’s a vestibular and visual nightmare.

I’m tired when we arrive. Being on high alert and concentrating intensely for an hour is exhausting. But I feel relieved, and sink down into the seat in the reception area at the audiologist.

Soon after, 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. I place my novel, ‘The Colour of Broken’, onto the desk beside me.

Jane tells me she is the Hearing Implant Manager, and a Senior Lecturer at the School of Health and Rehabilitation Science at the University of Queensland. I am in good hands. She is also the one who decides my fate, whether I am a candidate for a Cochlear Implant or not.

She reviews my file, my recent hearing test, and questions me about my history with Meniere’s disease, taking notes as I talk. Then she opens a power-point on the computer. It explains, page by page, the options for hearing devices for one sided hearing loss, like mine: cros hearing aids, and the bone conduction implants – BAHA and Bonebridge, commenting that they aren’t suitable due to the hearing loss in my ‘good’ ear.

She focuses on the Cochlear Implant slides: the what, why, how.

Afterward, words on the screen bounce out at me like they’re in 3D:

‘A cochlear implant can be the extraordinary alternative that CHANGES YOUR LIFE!’

There’s those words again. It will change your life. I keep reading it. I keep hearing those words from others.

Jane hands me the cochlear implant to hold. This is really happening. I heft it. I am surprised by the light weight. She places the outer cochlear components on my head and holds it there so I can feel what it is like. Small steps, I think. This is a method of easing you into the implant, to help with acceptance. Psychology at work.

‘What do you think? Do you still want a cochlear implant?’ she asks.

‘Yes,’ anxiety and I answer. My shadow, Meniere’s, glares at me.

‘What would a cochlear do for you?’ she asks.

I frown. What a weird question. It will help me to hear from my left ear again, obviously, I think. Is this a trick question? After all, she is the person who will decide whether I am a candidate for a cochlear implant or not. My shadow, Meniere’s, laughs at me.

I take a deep breath. ‘It would give other Meniere’s people hope of hearing again. It’s such a horrid, depressing disease. They need to know that a cochlear can help us hear again when they think there is nothing that can be done for hearing … and … I have counselled some people out of suicide. This will give them hope.’

‘That’s a very heavy burden to carry,’ she says.

I frown at her. Burden? I have never considered it a burden.

Jane tilts her head to the side a little. ‘What … would a cochlear implant do for … Julieann?’

And there it is. The question I was avoiding. The question about me.

My eyes sting and tears threaten. Stop.

The question is digging deeper than I want it to. I thought I had boxed away all my emotion to do with MD. This is meant to be my brave, courageous face. My Sunday smile. The one I wear all the time, so people don’t know when I am suffering. I’m a pro at it. My shadow, Meniere’s, chuckles. It’s always there, lurking.

I look out the window at the skyscrapers. How do I answer? What would a cochlear implant do for Julieann – for me? The obvious answer is that I want to be able to hear in my left ear again. Am I being selfish? What does Jane want to hear? What are the magic words she wants me to say?

‘For me?’ I shake my head, not wanting to continue to answer. This question is hurting. ‘I’m always putting myself last …’ I shake my head again. Do I even deserve to hear again with my Meniere’s ear? I think. A psychologist would have a field day with that comment!

Tears. Stop. STOP!

I cover my eyes with my fingers to prevent the waterfall of tears running down my face. I can’t ugly cry. My mum will notice when I finish the session. I don’t want her to know I have been crying…

I take a deep breath and sigh, trying to imagine life of hearing with a cochlear implant … it’s so hard to remember what having two hearing ears was like. I get a brief glimpse of me before Meniere’s disease. Before the shadow of darkness took full, vibrant colour away from my life. I can be re-coloured, right?

I swallow the lump of emotion rising from my chest. I can’t look back at my life. It’s too painful. I need to keep looking forward.

Courage. Breathe.

I look at Jane. Tears trickle.

‘A cochlear would give me a sense of direction of sound, especially with teaching in the classroom and yard duty. It would be a safety issue at school and my non-school life – my husband has saved me three times from being run over by a car … I would be able to go to social gatherings again. I don’t do social events anymore because I can’t hear what is being said, and people get tired of me asking them to repeat what they have said. I smile and nod when I shouldn’t be, and people frown at me. They choose to talk to someone else because I can’t hear them properly. The rejection hurts … really hurts. I now choose not to go out with friends and colleagues because I can’t hear properly.’ The words gush out of me.

‘Good,’ she says. ‘Do you still want a cochlear implant?’

‘Yes,’ I whisper.

‘Let’s do some hearing tests,’ she says.

I’m baffled. I did a thorough hearing test less than a week ago.

Wearing my Phonak cros hearing aids, I sit between two speakers, one near my left ear, the other one on my right. Jane tells me to keep looking forward and not to move me head. Sentences flow out of the speakers that I have to repeat. First with no background noise, and then will background noise on my left and then on my right.

Even with my cros aids on, I don’t have any speech discrimination when background noise is played on my good ear side. I do however get one sentence right – ‘Are you baking chocolate cake for the visitors tonight?’ I feel pleased with myself. My chocoholicism is shining through.

‘You’re very good a keeping your head still,’ she says.

‘I’ve had lots of practice.’ The memory of spinning violently with vertigo comes crashing forward. How many days have a I walked around and not moved my head to stop the nausea, or try to put off a vertigo attack? How many hundreds/thousands of hours have I keep my head perfectly still while spinning?

‘You’re very good at focussing on the words with the background noise playing,’ she says.

‘I’ve had lots of practice,’ I answer, thinking – this is every moment of my awake life.

‘If you are given a cochlear, you have to work at learning to listen with it. It’s not a magical device that’s turned on and suddenly you can hear normally. You must have people around you who will support you.’ She looks at the empty chair in the room. I take the cue and babble on about my husband having to go back to work today after facial surgery, and that my mum and dad are waiting outside for me.

‘Thanks, Julieann. I’ll write up a report about my recommendation for you and send it to your ENT. He will tell you if you are a candidate for the cochlear implant.’

Relief washes over me. I am done. No more tests or questions that are too uncomfortable for me to answer.

I gesture toward my novel. ‘I’d like to give this book to everyone here. It has a main character with Meniere’s disease. I wrote it to raise awareness and to help raise money to find a cure. I’ve donated around $3,200 to Meniere’s Research Fund Incorporated so far. Amelia Grace is my pen name.’

Jane smiles and I sign it –

“The spark of hope can never be extinguished.”

‘I’ll leave it in a place for all patients to be able to read, but I’m going to be the first person to read it!’ She looks at me, her eyes twinkling.

I walk out of the consultation – me and my shadow, Meniere’s. Anxiety is dawdling behind. Jane hands me a yellow folder.

The moment my mum and dad see me, they smile. The universal language that puts you at ease.

Next. Back to my ENT to learn my fate.

About this blog …

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 #2

November 7, 2019.Reading time 12 minutes.

Monday 21.10.19 continued …

My own silence is smothering me. The journey to the Cochlear audiologist in the city is forty minutes long. Forty minutes of staring out the window. Looking but not seeing. Forty minutes of mixed feelings and questions ruminating inside me, alongside anxiety, and the five impossibly loud noises of tinnitus that never leave me. I can never have inner silence. Ever.

I turn my head towards my husband. My ENT shakes his hand each time we visit him, and he fills him with kind words about sticking by me through my Meniere’s journey. ‘Most men would have left their wives by now,’ he says.

I focus on his facial scars from a recent surgery to remove two skin cancers from the bridge of his nose (a Basal cell carcinoma and Squamous cell carcinoma). Sixty-eight stitches. ‘There goes my modelling career,’ he joked with the plastic surgeon. We all laughed. Our fabulous Australian sun loves us too much. At least the cancers are removed now. He’ll get on with this life after this slight hiccup like nothing even happened. It’s not as if he has a debilitating condition that stops him from enjoying life, I think. My stomach drops. I berate myself for not being sympathetic to what he has been through, and guilt hits me like a freight train.

Disappointed with myself, I look back to the road before us, the movement of cars making me nauseous. I hate Meniere’s disease. When will it end? Meniere’s for life. Like a prison sentence. Wherever I go, Meniere’s goes. My shadow, always present. Lurking.

The first thing I see at the hearing centre is a ginormous ear. Yep. I’m at the right place!

An audiologist enters the reception area and calls me to follow him. We go into a soundproof room and he introduces himself and then asks me, ‘Your Meniere’s started in which year?’

‘My left ear,’ I answer.

‘Uh – huh. Which … year … did it start?’ He repeats.

I burst out laughing at my mishearing. Welcome to my life. He doesn’t laugh like me. I’m guessing he has heard it all before. I am having my hearing tested for hear loss after all. Mis-hearing is nothing new to him. ‘It started in 1995,’ I answer in a serious voice.

He asks more general questions, and at the end of his questioning, I say – just for general information, ‘I know that research shows no cause and no cure for Meniere’s, but I believe my Meniere’s is caused by being hit on the side of my head, close to my left ear, by a softball when I was sixteen.’

The audiologist leans back in his chair and folds his arms.

Uh-oh…

He takes a deep breath. ‘Meniere’s disease is an inflammation of the endolymphatic sac and—’

‘I know, in detail, what happens in the inner ear with Meniere’s. I have been researching about it for 24 long years and was invited to the Meniere’s Symposium in Sydney last year (https://healthyhearing.com.au/menieres-disease-research-symposium/) and have heard about and seen images of the physiology of what happens during a vertigo attack.’ I had cut him off. I feel bad. He assumed I had no idea I knew anything about my disease, as one would. He should have asked first. All of us Menierians search for the exact moment that might have changed our lives, and research the disease itself. We talk to each other. We know A LOT of stuff about our disease.

He gives me a nod and says no more on the subject.

I add, ‘I had a hearing test a couple of years ago and it showed that I have cookie bite hearing loss (https://www.hearingdirect.com/au/blog/what-is-cookie-bite-hearing-loss.html ). It’s genetic on my father’s side. That’s why I would like to get a cochlear implant, so at least I have some hearing in the future.’

He gives me a nod again. ‘Okay. Let’s start the hearing test.’

He sets me up with the earphones, beeper, gives me the usual hearing test instructions then sits at his desk of hearing test gear. He gives a negative sigh and I wonder if he likes his job. We begin on my ‘good’ ear first, and I push the button each time I hear a beep, trying to ignore the terribly loud tinnitus in my left ear. Some tones I guess because I don’t know if it is the tinnitus sound or the beep, so I just push the button anyway.

My Meniere’s ear is next. I cannot hear the beginning of the beep at any time, but towards the finish of the testing, at times I hear the end of the beep, I think, so I press the button. I get excited when I can hear some high tones. I can hear! My heart smiles.

The testing continues. By the end, I have sat through these hearing tests:

1. pure tone audiometry, which tests how loud different sounds need to be for you to hear them

2. air conduction, which measures whether you can hear different tones played through headphones

3. bone conduction, which measures how well your cochlea picks up vibrations

4. tympanometry, which isn’t a hearing test, but a check of your eardrum

When the audiologist is finished, I sit in silence and wait on his results, still buzzing from the fact that I could hear some high tones in my Meniere’s ear. It’s a good day 😊

He looks up from the audiometric graph and pulls a face. I interpret it as a good result. I can hear in my Meniere’s ear, when I thought I was profoundly deaf. That’s what he is about to tell me…

‘You don’t have cookie bite hearing loss,’ he says. ‘Your right ear is fine, except you can’t hear the high sounds above our normal hearing range, which people with normal hearing can on our tests. Your Meniere’s ear is what we call, “dead”.’

I am surprised and happy. I don’t have cookie bite hearing loss? How did the testing show cookie bite hearing loss two years ago, but not now? I’ll take it as a win for my good ear.

Then my heart sinks. Weirdly I feel sorry for my left ear. The audiologist called it ‘dead’.

I touch my ear without thinking. Like consoling it. It’s like he has hurt its feelings. I blink.

The audiologist continues, ‘We do cochlear implants for one-sided hearing loss like yours. You have zero speech discrimination, so a cochlear implant will help you. Are you seeing Jane, the cochlear implant assessor, after this test?’

‘No. That’s Monday.’ I nod. Anxiety raises its head.

He gives me a smile. ‘Right. Let’s optimize your cros hearing aids.’

I follow him to another room overlooking the city. He cleans my Phonak Cros hearing aids that I love. I wear two – the left one sends the sound to the right hearing aid, so I can hear sound on my left side. The audiologist tells me the best place for prices to get replacement filters and batteries. Then he places them into my ears, puts an analysing device on my shoulders, and connects it all to the computer. He adds my latest hearing results to the program, and just like that, the computer system optimizes my Cros hearing technology. Brilliant.

I walk out of the audiologist’s rooms happier than I entered. I don’t have the genetic cookie bite hearing loss that affects only the girls on my dad’s side of the family, like my aunty and her three daughters. I’d add a happy skip, but I’d lose my balance and fall over. My shadow, Meniere’s, chuckles at me.

The next appointment – assessment for a cochlear…

About this blog …

It’s not just about the physical aspect of a Cochlear Implant – you can research them online. I am sharing the other side of the journey towards a Cochlear Implant – my feelings, my appointments, the process, apprehensions, successes and failures 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 of 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.

My Shadow – Meniere's

Category: anxiety

‘Tis the Season to be … anxious …

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