It Will Change Your Life #11

December 19th. Surgery day …

The birdsong of the new day wakes me. If I had been sleeping on my good ear, I would never had heard it.

I’m thankful for that precious moment. It’s been my survival mantra since battling the ferocious Meniere’s disease. Look for the small things that make me happy, no matter how small or insignificant to others. It’s been 24 years of Meniere’s disease now. And it’s been a helluva journey that had me on my knees pleading for mercy many times as I battled the violent, abhorrent vertigo that left me a shadow of myself, lost in the darkness of depression, trying to find me, my old happy, carefree, confident, successful self. Menierians know exactly what I am talking about.

I blink away my past. Today’s the day. The surgical step in regaining my hearing, I think to myself. There’s no turning back. Yesterday was proof, more than enough, that I need the Cochlear Implant.

I climb out of bed and walk to the window and look out. There is still smoke haze hanging about from the 100s of fires that have been burning, many of them lit by people who think lighting fires is a fun thing to do. How dare they? I shake my head. We desperately need rain.

I change my focus. I need to finish breakfast by 7:30am and then fast for surgery. Mentally, I tick off what I have already done for today:

* Organised my daughter to spend the day with her father (my husband), to make sure he is okay while I am having surgery. He gets a terrible look of worry on his face, filled with sorrow, when we talk about the possibility of me having vertigo again. It breaks my heart. It’s a stark reminder that Meniere’s has a powerful impact on those who are spectators to what we go through with this horrid disease.

* Organised for my mum to catch a lift with us to the hospital.

* Organised for my two sons to pick up my dad to come and visit me after the surgery.

* Laughed at the absurdity of all the organisation I must do to ensure that the wheels turn smoothly.

Time for me.

* Breakfast before 7:30, then fasting. Toast and tea and chocolate 😊

* Pack the overnight-stay bag for hospital.

* Race to Target to buy some slippers for hospital. I have never owned any. I choose the bunny slippers because I have always wanted to have a rabbit as a pet. In Queensland, Australia, where I live, it’s a $63,000 fine if you are caught with a rabbit. This is the closest I can get.

* Double check paperwork.

I still for a moment. Vertigo. I have a terrifying fear that it would be awakened by the procedure. My shadow, Meniere’s, is dancing around me smiling. I raise an eyebrow at it and it stops.

The clock ticks over to 10am. It’s time to go. It’s time to start a new chapter in my Meniere’s journey.

I hug each of my sons and tell them that I love them. My eldest son tells me he loves me, and I hear it easily. My youngest son says something after I tell him I love him. In true Meniere’s deaf ear fashion, and one sided hearing, I can’t hear what he said and say my usual, ‘I didn’t hear you, can you say it again?’ and he says with more volume and clarity, ‘I love you, too.’ My heart melts.

I do a final swoop of the house. It is clean and tidy. Then walk to the front door.

My husband has my hospital backpack slung over his shoulder, and my daughter, her heart more beautiful than sunshine, stands beside him. They watch me, worry etched on their faces. I suck in a deep breath, controlling the deep emotion that tries to surface, not for me, but them. I don’t want them to worry.

‘I have an amazing feeling of peace. No anxiety at all,’ I tell them. And it’s the truth.

The front door closes with a feint click. It’s symbolic in a way. One door closes, another opens…

I walk to the car thinking, Anxiety, where are you? My shadow, Meniere’s, and me, are going in for surgery. Where have you gone? I can’t get over the feeling of peace that envelopes me. I decide to accept it and receive this gift from my faith, with a full and thankful heart.

Our car pulls into my parent’s house. Mum and Dad greet me with a smile. The universal language that puts you at ease.

‘Feeling nervous?’ my dad asks, making his hand shake for effect.

‘No. Not at all,’ I answer. Dad raises his eyebrows at me in disbelief.

‘I’m nervous for you,’ my mum chips in.

‘Good on you, Mum,’ I say, offering her a smile.

I hug Dad. Mum sits in the car, then me, and we are off. I’d love to listen to some music with my good ear in the car, but Mum chatters on. I’m guessing it’s her nervousness.

We arrive at the hospital and check in, then proceed to the surgery waiting lounge. Me and my family take a seat together, while my shadow, Meniere’s, bounces on the empty seats. I shake my head at it. I look for my friend, Anxiety, but he’s still not here.

It’s 11:30am. There’s quite a few adults and three children awaiting surgery, and a few of their partners and family members. I watch a man entertain his daughter with a Christmas Elf plush toy. I decide that he is more amused by what he is doing than his child. My shadow, Meniere’s, is sitting on the floor in front of him, watching.

At 12 pm, I’m called to a room by a nurse. She does the pre-op check – temperature, blood pressure, a million questions relating to my health. She tells me that my surgery is scheduled for 2pm, and I return to the waiting room.

At 1:15pm, my anaesthetist appears. I know what he looks like because I Googled his name a couple of weeks ago. My husband and I follow him to a room where we sit and wait for him to speak.

He greets me, talking loudly, over-pronouncing every word like I am totally deaf in both ears. I think of that annoyance profoundly deaf people have where normal hearing people think the person will hear better if they talk loudly.

I tell him I have one good ear and can hear him well. He smiles, and immediately his volume of voice returns to normal.

He asks me medical questions revolving around how I have reacted to anaesthetic with previous operations and takes notes, then I tell him that I have no anxiety about the surgery, and watch for his reaction, both facially and non-verbally with body movement. It still worries me that I’m so peaceful. I am an overthinker after all. I ask him if it is that a thing, like a phenomenon? Or, is there a psychological explanation for it?

He shakes his head and replies, ‘It’s good not to have anxiety.’

His last words before we exit the room are, ‘Don’t worry. I’ll look after you, I promise.’

We return to the waiting room. I keep looking at my watch, wondering when I will be called in for surgery preparation. It’s getting closer to the 2pm surgery time.

At 1:45pm, I am greeted by another nurse. It’s time to go. I hand out hugs and kisses to my husband, daughter and mother, then disappear, following the nurse to yet another room, where she asks me what my name is and my date of birth. She gives me a medical bracelet and cross checks the ID number on it with my paperwork. She shows me the change room, where I am to change into the hospital gown, including covered bare feet and a hospital robe. Once I am dressed, she places tight stockings on my lower legs to prevent blood clots during and after surgery. Then I’m led to a very comfortable recliner chair in another waiting room with a television, where she places a warm blanket over me.

And I wait. But it’s a good time for reflection. I think back to the posts from the Cochlear Implant Experiences Facebook group I joined four weeks prior. The discussions and support of other members on there and what I have learned from them has been invaluable.

It is 2:10pm, and I watch other patients come and go. I watch the television, which has closed captioning, then decide to close my eyes for a bit. I hear my name, and I follow another nurse to have a heart trace done (ECG) before returning to the waiting room. Finally, a theatre nurse calls my name, and I follow her to a hospital gurney that will take me to surgery. I don my surgery cap, hair tucked in. I listen to the nurses chatter about holidays they are taking, then my gurney is wheeled to a holding bay. The theatre nurse tells me they need to change around the operating theatre because they will be working on my left ear. She disappears.

My surgeon enters my holding bay with a smile. He approaches me on my left side, then quickly moves to my right side. ‘You will hear me better on this side,’ he says. I love him already.

‘I need to draw on you to make sure I implant the correct ear. Tell me what surgery you are having done?’ he says. It’s a question I have answered many times already, as well as my full name and date of birth. Surgery protocol.

‘I’m having a cochlear implant in my left ear,’ I answer.

He nods and smiles, then leans over and draws on the left side of my neck, just below my left ear. ‘See you soon,’ he says, and bounces out of the room with too much energy.

Five minutes later, my theatre nurse is back, and we are travelling the halls of the operating theatres. We enter the surgery room, and I gaze around, taking it all in. I see my surgeon studying my MRI, arms folded. He turns and smiles at me. The nurse lines up the gurney to the operating table, and I shuffle over to it, then lie down, ensuring that I am in the middle of the narrow table.

I am surrounded by the anaesthetist, a theatre nurse and my surgeon.

The nurse asks, ‘What is the name of your surgeon, and what is your full name and date of birth?’

As I say my surgeon’s name I look at him. He nods his head and his brown eyes show that he is smiling. I answer the rest of the question and the nurse checks my bracelet ID number to my name.

‘What procedure are you having done today?’ she asks.

‘I am having a cochlear implant in my left ear,’ I say. They all nod.

 And then the movement begins. The anaesthetist straightens my right arm on positions it on a support board that juts out from the operating table, then places a tourniquet around my upper arm. He taps my lower arm a couple of times and inserts a cannular. Within 30 seconds I feel myself getting sleepy. The last words I hear are, ‘Take a deep breath,’ as the anaesthetist places the mask over my face…

I wake in recovery to the sound of my name being called. I open my eyes and become troubled by what I see. My biggest fear was waking to vertigo, and then having vertigo for days or weeks after surgery.

‘I have double vision,’ I say to the nurse, then close my eyes. This isn’t right, I think. Nowhere in my copious amounts of study and research was double vision mentioned. 

I open my eyes again, and the double vision corrects itself. I feel my body relax after a small moment of panic.

The nurse checks my temperature, blood pressure, oxygen level and heart rate. I keep my eyes open, focussing on any sign of vertigo. None. I then become aware of a tight bandage around my head, over my ear. I have no pain, which, I assume is due to any pain medication given while I was unconscious.

In the next moment, my hospital gurney is moving. I’m being taken to my room for the overnight stay.

As soon as the hospital bed is in position in the room, I look up to see my husband entering, worry painting his face like a fractured mirror. I smile at him, and instantly his worry vanishes, like it has evaporated into thin air.

The nurse fusses about, conducting her observations, recording everything she needs to, and asks if I have any pain, which I don’t. My heart rate is sitting at around 58 beats per minute, but that is normal for me.

Then my mum and daughter arrive. My mum smiles slowly, while Claire eyes me warily. She has seen me with too many tears in her lifetime. I smile at them to put them at ease, but I know they are worried, as their furrowed eyebrows plead for answers to unasked questions.

‘I did it,’ I say. ‘No pain at all. I woke up with double vision. But that’s all good now.’ I touch the bandage around my head.

‘Nice head band,’ my daughter says with a smirk. I grin back at her. She has a way with humour that we both understand. My husband and three children have learned to deal with my Meniere’s monster with humour to make me laugh. It’s the only way for us all to cope as they watch me fall apart in front of their eyes. They are brave. And observant. And beautiful. This humour from my incurable disease is a bond that holds us together as they gather around me to hold me up from falling in a heap. 

I look up as my two sons and my father enter the room. Well done, boys, I think, Grampy would have loved spending time with you in the car.

Amongst the chatter and explanations and assuring them that I am fine, I discover a tray full of food – chicken soup, a meat dish, vegetables and mashed potato, cake, tea, milk and two bottles of water. Yay! I’m starving! I eat happily, my family tasting this and that as well. The nurse walks in for observations and tells me the surgeon was very happy with the operation. He x-rayed the position of the placement of electrodes while I will still under the general anaesthetic, and that he will be in tomorrow morning to remove the bandages.

After my family leave, I settle in for some much-needed sleep amongst the hospital alarms and beeps.

Still no pain at the surgery site.

Friday 7am…

My surgeon enters the room with a calming presence.

‘How are you?’ he asks. His gaze is focussed on my face, waiting for my answer.

‘Great,’ I say. ‘No pain. Did you give me any pain medication during surgery or after?’

He shakes his head.

‘I’ve had no vertigo. Just double vision when I woke in recovery. Are you happy with the surgery?’

‘Very,’ he says. ‘I managed to get the electrodes all the way into your cochlear.’

My eyes widen. I remember the Cochlear Audiologist telling me that sometimes the surgeon can only get the electrodes partially into the cochlear. ‘Wow,’ I say. I can’t believe it.

He walks to the basin and washes his hands, and takes some scissors from a tray, then walks around to the right side of my bed. ‘Let’s take the bandage off and see how it looks. I’ll have to ruin your great hair style,’ he jokes. He uses the surgical scissors and cuts through the bandage and studies the incision site. ‘Looks good. Sleep sitting up for a few days and don’t wash your hair. No heavy lifting or sneezing. I’ll see you on Monday at 10:45am. Any questions?’

‘Aaah – no. Just … thank you for looking after me.’

He gives me a nod and a smile. ‘Take is easy, and I’ll see you Monday.’

10am

My husband arrives. He hands me a copy of my own novel that has a main character with Meniere’s disease. It’s a gift to the nursing staff. And a gift for those with Meniere’s disease. It will help the nursing staff understand what Meniere’s is really like – physically, socially, emotionally, psychologically. We need to find a cure! I sign it for them.

After final observations and cannula removal, I am discharged from the hospital. I am in disbelief at how good I feel. And I am soooo thankful, with a heart overflowing with gratitude – my faith, my medical specialists, the nurses, my family – it takes a village.

Life is good. The light shines more brightly when you have struggled through the darkest of dark storms.

Art work by Julieann Wallace 2019

There is always hope.

Art work by Julieann Wallace 2019

Next blog. Happy New Ear! Cochlear Implant activation …

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 16th. 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 18th. 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 …

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.

Artwork by Julieann Wallace

It Will Change Your Life #8

Wednesday 20th November – final expectations with cochlear audiologist

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

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

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

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

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

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

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

– Technical aspects

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

– Ear fitting

– Care of the outer device of the Cochlear Implant

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

‘Yes,’ I answer.

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

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

‘Which colour would you like?’

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

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

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

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

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

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

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

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

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

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

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

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

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

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

There’s bad things? I think.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Next appointment – Wednesday, 27th November – balance therapy

It Will Change Your Life #6

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 …

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 # 5

November 5th 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 …

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 #3

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.’

eBook & print book available at Amazon

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.

Art by Julieann Wallace

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 #2

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.

psdesign1

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…

Artwork and words by Julieann Wallace

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.

Meniere's and me

It Will Change Your Life #1

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 7th 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