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 #8

November 25, 2019.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 19^th of December, and switch on of your Cochlear Implant is the 7^th 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, 27^th November – balance therapy

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 …

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 #6

November 20, 2019.Reading time 10 minutes.

Thursday, November 7 – MRI & CT Scan

My beautiful daughter, Claire, is driving her beloved mini. I’m sitting beside her, groovy sunglasses on. My shadow, Meniere’s, is bouncing up and down on the seat behind me like a child high on sugar. Anxiety sits beside it, shaking its head at Meniere’s. I smirk at anxiety.

We are on the way to my MRI and CT Scan. Claire volunteered to drive me. She has always loved minis. Her love affair began a long time ago, way before she had her Year 12 formal, four years ago, when we hired a mini convertible for her and a friend to be driven to the formal venue.

Claire has a heart of gold. I often feel guilty that I couldn’t give her and her two brothers a childhood of excitement like I had always dreamed of – Wiggles concerts, other kids’ concerts, rides, play dates, adventures etc. Yet, she has grown into a remarkable young woman, as her two brothers are remarkable young men.

We turn the corner into the X-Ray building carpark.

‘Do you think they’ll find the Meniere’s Monster inside my ear on the scans?’ I ask. My shadow, Meniere’s, stops bouncing up and down and listens.

‘Yes,’ replies Claire, ‘eating cookies!’

I laugh. That’s how we always deal with the cruel Meniere’s disease. With humour. ‘I don’t have Cookie Bite hearing loss anymore, remember, so it can’t be eating the cookies!’ My shadow, Meniere’s, pulls a sad face.

Claire smiles at me. She parks her mini and a mature-aged man smiles at us. He must love minis, too, I think.

Claire is armed with a book to read as she waits for the 40 minute MRI followed by the CT scan.

Today, I have a wandering headache and for once I am glad. I visualise the MRI and CT Scan zapping it to make it go away. I am happy for this next step before the Cochlear Implant, because if there is anything else nasty going on inside my head, it will show up on the tests.

I wait next to Claire. The waiting room is filled with 60, 70, 80 and 90-year-olds. I feel young for once.

‘If you hear my name called, and I don’t, can you tell me, please,’ I say to Claire. She has always been a source of extra ears for me. So thankful.

My name is called, and surprisingly, I hear it. But then, I have no idea where the voice is coming from. This is the problem with one sided hearing loss, you lose all sense of direction of hearing. It is most frustrating.

I stand and look around the room to match the voice to a woman in uniform. After scanning the entire area, I see her, smiling and waiting at double glass doors. I follow her through the doors, my shadow, Meniere’s, follows me with a sassy walk. Anxiety gives him a poke.

After the wardrobe change into the medical attire, I sit and wait. The most interesting thing in the room is the fish tank next to me.

A person appears in front of me, giving me a fright. She approached me from my left side, that’s why I didn’t hear her. I follow her, with my entourage, into the room with the MRI machine. Amazing technology.

Before I came to the appointment, I wondered what the difference was between an MRI and a CT Scan, so I Googled it, and found this interesting image that explains it well.

I lie down, put yellow ear plugs into my ears, and then have earmuffs placed over my ears, to protect my hearing, they say. I chuckle, thinking, I don’t need it for my left ear.

‘You can keep your eyes open or closed, but just don’t move your head,’ I’m told.

Too easy, I think, I’ve had lots of practise at not moving my head. Haven’t I vertigo? My shadow, Meniere’s, nods.

I’m transported inside the MRI machine.

There is nothing but whiteness, except for a picture of fish in their blue water of paradise above me. Well played, I think, giving people something to look at while having an inside picture taken.

A similar image to what was on the ceiling of the MRI – the real image had many more fish.

I close my eyes and wait. My tinnitus is loud. The machine is loud, even through the protection of the ear plugs and earmuffs. But my tinnitus is much louder than both of those. It’s such a show-off, always being the loudest, even a rock concerts.

I can hear music. A little. I open my eyes to try and work out the song. “Welcome to the hotel California”. Apt lyrics, I think, especially the end of the song … You can check out any time you like, But you can never leave!’ Meniere’s – you can never leave. I smile with my eyes. Music mirroring life. I look to the fish and decide to count them. 276.

I try to concentrate on hearing more of the music, but I can’t. My tinnitus is just too loud. Meniere’s, my shadow, is doing the victory dance.

My Meniere’s ear is throbbing, I notice. But not with pain. Is it the earmuff pressure? I shrug in my mind, then imagine the Meniere’s monster taking on different poses for selfies with the MRI. My shadow, Meniere’s, takes a bow.

After 20 minutes, the MRI is finished. I go for my CT scan, which is much quicker.

When I leave the building with Claire she asks, ‘Did you see any cats in the CT scan?’

We climb into Claire’s mini and start her up. My shadow, Meniere’s, is gazing out the window and anxiety has shrunk to the size of a peanut. Next destination, shopping. Claire is an artist and has her final art exhibition for university next week. She has a quest – to find something special to wear.

We stop for a hot drink. I choose a lavender latte. A celebration of my next step towards a Cochlear Implant completed.

The next appointment – the psychologist …

Claire and I – the morning after her Year 12 Formal.
Fun with the hired mini convertible!

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 # 5

November 16, 2019.Reading time 8 minutes.

November 5^th 2019 – the Surgeon.

Life with an invisible illness is an interesting voyage. People cannot see what you are going through, what you suffer- physically, emotionally, psychologically, socially – your invisible scars – so it’s hard for others to empathize.

People would often say to me, ‘Your life has been so easy. Everything just falls into place. Good things always happen to you. You’re always smiling.’ It used to frustrate me. They had no idea what I was going through. They had no idea I worked hard to be where I was in my career, my family, my three children. Nothing ever “fell into place”. It was earned.

During the hardest time of my Meniere’s disease, I was in very deep and dark depression that I couldn’t climb out of. Yet, I kept smiling. It was easier that way. I would patch up the cracks in my mask before I put it on and met with others. If I could meet others … if my shadow, Meniere’s, hadn’t imprisoned me for five hours of violent, debilitating spinning that would land me in hospital at times.

In hindsight, I’m glad my illness is invisible. It makes it easier to pretend that I am okay. I don’t have people avoiding me like I have a contagious condition. I don’t have people looking at me with well-meaning concern, or that “pity” look. I hate the pity look. I don’t have people devaluing the severity of my symptoms, like:

‘It’s okay, dear, we all get dizzy sometimes.’

‘Oh, I have tinnitus too. It’s so common. When it’s really quiet, I can hear a little “sssssssssss”. You’ll be fine!’

‘My friend had Meniere’s disease – he got a bit faint sometimes. He went to the doctor and is cured.’

Meniere’s disease. No cause. No cure. Yet.

Good things are coming. I know it. I follow the research.

My Cochlear Surgeon is younger than me, as my ENT had said.

I follow the surgeon into his office, my shadow, Meniere’s, behind me, then my husband, and anxiety far behind. The more I know about the Cochlear Implant the less anxious I feel. And I am so thankful to hundreds of people with Cochlear Implants who have reached out to me. The world is a wonderful place.

The surgeon tells me that my ENT believes my Meniere’s disease has “burnt out”.

“Burnt out”. There’s those two words that float around in Meniere’s groups.

According to menieres-disease.co.uk, “the term ‘burn out’ is frequently used to describe Meniere’s as though it is the end of the line, that it has finished. However, it really means that the vertigo attacks have disappeared as the vestibular function has now been destroyed. The disease continues to progress as hearing is completely lost, tinnitus and fullness will continue even after burn out.”

‘Hmmm … I’m not so sure that it has burned out. I still get little mini spins at times,’ I say. And it’s definitely not BPPV.

I am questioned about the history of my Meniere’s, then the surgeon asks me to sit on a stool so he can look inside my ears.

‘Spin to your left,’ he says.

‘Spin?’ I say with a smirk, referring to the spinning of vertigo, then swivel the chair to the left, slowly.

‘Turn to your left,’ he says, smiling. Ah – he has a sense of humour. Good. He uses the auriscope to look inside my ear canal.

‘Turn … to your right,’ he says with a smile in his voice. I swivel the chair to the right, slowly, and he checks inside my ear canal.

The remainder of the appointment flows with quick succession:

Surgery date: 19 December. Overnight stay. $25, 000 Cochlear Implant cost covered by the health fund. Any questions?

I take a deep breath. ‘Will my vertigo return?’

He considers my question, then says, ‘I don’t expect it to, but there are no guarantees. For Meniere’s patients who still have some balance cells left, I usually wash out the inner ear with gentamicin while I am in there as an insurance that they will not have vertigo anymore, but since you have been so good for quite a while without vertigo, I won’t do that, in case it upsets anything.’

I nod, feeling a little numb. There is still no certainty that my vertigo will not return. How can it be burnt out if the vertigo returns? My shadow, Meniere’s, crosses its arms and grins.

Before I leave, the surgeon gives me a form for an MRI and CT Scan, and tells me I need balance rehabilitation before I have surgery, and to continue afterward. I raise my eyebrows and nod. I have never had balance rehabilitation; I just relearned my balance to walk by myself after the gentamicin was injected into my middle ear in 2004.

I leave the surgeon’s office. Anxiety is waiting.

Next – MRI and CT SCAN

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 #4

November 14, 2019.Reading time 12 minutes.

October 31, 2019

I’m filled with so much doubt. I am choosing to get a Cochlear Implant. Am I allowed to choose? Or should I just accept my fate that I will remain without hearing for the length of my days, auditory colour disappearing from my life.

I didn’t choose to have Meniere’s disease. I didn’t choose vertigo. I didn’t choose deafness. I didn’t choose tinnitus. Just like other people who didn’t choose their incurable diseases or illnesses.

A Cochlear Implant feels like a second chance. A second chance at hearing. Of taking back something Meniere’s disease has taken from me. In my mind’s eye, I am facing the beast of Meniere’s, my sword drawn.

I want to be violent with Meniere’s. So violent. I hate it. I hate what it has done to me. What it has taken from me. I hate what it does to its victims. I want to slay it with an intensity that will obliterate it for eternity, with such force that it withdraws from bodily habitation of every person who suffers from it.

Cure come soon. Please.

I arrive in the city. I look up briefly from the footpath that I walk on. A rarity. My normal walk is focussed on the ground in front of me, ensuring each step will keep my balance. I see an old windmill on top of the terrace. Unkept grey, striking against the beautiful lilacs of the Jacaranda tree. It was built by the convicts in the late 1820s and is the oldest windmill in existence in Australia. Due to its windless location, the windmill morphed into a symbol of “dread and torture” as penal Commandant Patrick Logan used convicts to work a treadmill he had constructed to keep the arms turning in lieu of wind.

Dread and torture. Fitting. A perfect symbol for Meniere’s disease.

A weathervane decorates the uppermost part of the windmill. And there sits a crow, blacker than night. It squawks. Welcome, I hear. Today, you will learn of your fate.

I inhale deeply. My eyesight returns to the uneven, battered, cracked path in front of me. Falling is never a good thing. Once you have your balance cells destroyed, when you fall, you have no idea where to place your hands to protect yourself.

The first time I fell was Christmas 2018. We were on holiday in Tasmania, walking the Dove Lake trek at Cradle Mountain. 5.7 km. 3 hours.

After the walk we entered the cafeteria for a drink. Without warning, tears filled my eyes. In public.

My husband turned to me and the look on his face said it all. His eyes widened. ‘What’s wrong?’

‘I fell,’ I said. I wanted to sob. Loudly. Aftershock from the fall. I caught the sob in my throat. ‘I fell and I couldn’t stop it.’

His eyes filled with tears, but they didn’t leak down his cheek like mine. I always hate seeing his eyes that way. He was following me as we walked, to catch me if I fell. He always does that for me. My protector. And when it happened, there was no way he could stop it. I remember the panic in his voice as he leaned over me, asking if I was okay, looking over me, again and again. ‘Did you hurt yourself?’ he had asked.

All I could say was, ‘My phone is under the bush, over there.’ I had no idea how I saw it slide under the bush. When I fall I have no idea where to put my hands to stop me, or protect me – inside my head I see a body but no arms or legs. That’s what destroying your balance cells does. I just have to wait for impact and suffer the consequences.

‘I don’t care about your phone. Are you okay?’ he said.

‘Yes,’ I said. It was a lie. I was hurt. But I wanted to get up to save face. There were many people on the walking track. I HATE YOU MENIERE’S!

My husband pulled me up off the ground. My daughter picked up my phone. She was too quiet. How many times had she witnessed Meniere’s bring me to my knees with vertigo, deafness, depression? And now falling.

I blew out a long breath between my lips. Then set a rock in my sights to sit on for a moment to assess my injuries, then walked there, my husband holding onto my arm to support me. I wanted to yell at him, “LET GO OF ME. I’M NOT AN INVALID!” But I didn’t. He was trying to help.

I sat on the rock, looked over the lake and focussed on where I hurt – my wrist, my arm, my ankle and my back. Hold yourself together, I thought, people fall all the time. Put on your “I’m okay mask”.

‘Are you alright, Ma?’ my daughter asked.

Hold yourself together. The emotion of ‘I want to fall to pieces’ rolled through me. Hold it together. Breathe. ‘It could be worse,’ I said, ‘I could have broken something.’ I was hoping that I didn’t break anything. My wrist, arm and ankle were throbbing. Not to mention my back spasms. ‘Thanks for picking up my phone,’ I added.

She nodded, looking at me with concern in my eyes.

‘I’m sorry for falling,’ I say to her. I don’t want her to be embarrassed by me. I HATE YOU MENIERE’S.

And of course, she is not. She never is. She’s always one of the first to help. It is my own self-judgement that betrays me.

I stand. In pain. But I can walk to finish the last hour of the track.

My daughter is in front of me, glancing back at me once and a while, and my husband behind me. I’m glad. He can’t see me wriggling my fingers to check my wrist, and feeling where my right arm hurts, nor the wince on my face when my ankle hurts more than I want it to, or my back spasms. All I can think of is when my son would roll his ankle at elite triathlon training, and his coach would tell him to walk normally on it. So that is what I do, despite the pain.

Back at the cafeteria …

‘I could have died if I fell in a different part of the walk.’ It was true. Parts of the track were on a boardwalk above the ground that fell steeply, scattered with rocks and trees. No rails to stop a tumble.

‘I know,’ he whispered. I watch his watery eyes and see him swallow harder than usual. ‘What do you want to drink? Do you want an ice-cream?’ He was using the distraction method. He knows me well.

Claire and I find a table away from most of the people. My wrist and arm throb. My back was spasming and my ankle twinging. Swelling was setting in. I ate my ice-cream, flicking tears from my eyes when they dropped. At least I don’t have vertigo, I thought. It was a good day, after all. Any day without vertigo is a good day. Suck it up, I tell myself, it could be worse.

We enter the ENT’s reception area. I laugh then shake my head in disbelief at the choice of carpet. The pattern on it makes me nauseous – thanks to my shadow, Meniere’s.

My ENT calls me in. ‘Good news,’ he says. ‘You are a candidate for a Cochlear Implant. I have signed you off on it if you wish to proceed.’

I swallow. There it is again. I get to choose.

I nod. But not with confidence. More like a ‘roll with the wave’ type of nod. I’m following a path but not certain of that is where I am meant to be. How will it change my life?

He refers me to a surgeon, and then as I leave, I thank him for his support throughout my Meniere’s journey.

‘You don’t know how difficult it has been for me, when there was nothing I could do to help you,’ he says.

‘But I am one of your success stories,’ I remind him. I wouldn’t be standing here today if it wasn’t for his help.

He shakes my hand. ‘Keep in touch. I want to know how you go.’ He gives me a smile.

I walk out of his office and numbness sets in. I’m a cochlear implant candidate. This just became real.

Next step. The Cochlear Implant Surgeon appointment.

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.

It Will Change Your Life #1

November 3, 2019.Reading time 7 minutes.

Monday, 21.10.19

The day is overcast, mirroring my mood. Today, I go for a Cochlear Implant “work-up” for my left ear. I’ve been considering a Cochlear Implant for a while, but have bathed in the delusion that somehow, my hearing will come back. But of course, it won’t – it’s just my eternal hope that floats around me as I journey through the incurable Meniere’s disease.

My symptoms started in 1995. Ear fullness, like I had been swimming and still had water stuck in my ear canal. Bouts of unpredictable, violent vertigo. Tinnitus. And then came the hearing loss. Gradually.

I was 28. ‘Meniere’s is more common in men over 50,’ my ENT told me. Online information at the time backed up the statement.

Today, I sit looking out the window at the dark, heavy clouds, painting the state of my heavy heart and dark emotion. I’m 24 years into my Meniere’s journey, yet I’m filled with tingles of anxiety travelling over my skin like waves, with one big question bouncing around in my mind.

If I have a Cochlear Implant, will the disabling vertigo of Meniere’s disease return?

And I’m not just talking about being ‘dizzy’. The vertigo of Meniere’s disease for me was the most abhorrent, violent, room spinning. Totally debilitating. Hold on to the floor even though you are already on lying on the floor, stare at one spot on the wall for four or five hours until the spinning subsides. Beyond exhausting.

And let’s not forget the relentless, vicious puking that feels like you’re about to turn inside-out, dehydrating the body so much you need to be transported to emergency at the hospital.

If you ever want to know how vertigo of Meniere’s feels, sit on an office swivel chair and get someone to spin you around as fast as they can, non-stop. Imagine not being able to stop it. For hours and hours and hours. Then imagine never being able to predict when vertigo will hit – because when it does, you are stuck wherever you are, and you absolutely can not move, as it will make the spinning impossibly worse. This is the vertigo of Meniere’s. Hell.

In 2004 I made the choice to destroy the balance cells in my left ear to stop the debilitating, violent vertigo. The bottle of gentamicin was now my hope. My ENT injected it into my middle ear.

Imagine for one moment, having to make the choice about destroying your balance cells. Balance. Yeah – that thing. Something you never even think about. Your body just does it for you.

I relearned my balance and retaught myself to walk with a new normal, using my eyesight as my guide for balance. But compared to the unpredictable vertigo, the destruction to my vestibular system was an answered prayer. It changed my life. It gave me my life back. With physical limitations. I was no longer spiralling down into the darkness of the Meniere’s prison where there is no escape.

But back to my question – if I have a Cochlear Implant, will the disabling vertigo return? And if it does, what does it mean for my life after living vertigo free for 15 years?

*eyeandear.org.au Adapted from images courtesy of Cochlear Ltd*

I’m taking a risk. I know that. The thought of having vertigo again terrifies me. My vertigo years were a very, very dark emotional place to be. Once upon a time I had a life and lived it fully – working full-time in a job I loved, physically able to do what I pleased, and engaged in a social life. I was happy. Then Meniere’s hit, and took it all away. Every waking moment was lived in fear of a vertigo attack. Sleep was not even a safe place. I would wake in the night, spinning violently, unable to close my eyes for four or five hours until it stopped.

I need answers from my ENT and my Otologist whom I am yet to see. Can my Meniere’s vertigo return due to the Cochlear Implant?

I walk out the front door and lock it behind me, anxiety joining me for the Cochlear Implant work-up appointment. Anxiety. We have been friends for a long time. Introduced to each other by my dark, dark shadow, Meniere’s disease.

Friends already fitted with Cochlear Implants tell me it will change my life … I sigh and wonder which way it will change my life.

Just breathe, I tell myself …

To be continued.

Julieann is a multi-published author and artist who is continually inspired by the gift of imagination and the power of words. 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 art teacher, editor, book designer, and book magician for other authors. Julieann’s 7^th novel ‘The Colour of Broken’ with a main character with Meniere’s disease hit #1 on Amazon in its category twice – all profits are donated to Meniere’s research. 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.

The Color of Broken: Grace, Amelia: 9780648084662: Amazon.com: Books

The Colour of Broken: Grace, Amelia: 9780648084624: Amazon.com: Books

Amazon.com: Daily Meniere’s Journal (9780648424451): Wallace, Julieann: Books