Dear Mama, I see you wiping your wet eyes

May 31, 2023.Reading time 10 minutes.

Dear Mama,

I see you.

I see you wiping your wet eyes.

I see your tears dripping onto the pillow.

I see you wince at sounds that you say are too loud.

I see you, lying on your bed, staring at the wall, as still as a statue for a very long time. Why can’t you move?

And when you are as still as a statue, I hear you vomiting loudly. It scares me. When will you get better?

I see you walking and nearly falling over.

I hear you crying in the shower.

I hear daddy crying, too.

It makes me sad.

I want to hold your hand.

Here, Mama. Have my magic wand. It will cure you. And then we can play together like we use to … before you got sick with many ears.

From your favouritest-est daughter,

Lucy-Lou

P.S. I love you Mama, to the furtherest-est sparkliest star and back. P.P.S. Please get better.

Do you ever try to hide your tears from your child?

Your crying?

Your sounds of frustration or anger?

Do you think you have hidden those emotions well enough from your children, because you don’t want them to know how you truly feel?

What if your child caught a glimpse of you at your time of vulnerability?

How would your child react? How would you react?

I have to admit. I cried in the shower. I cried in the middle of the night.

I wiped my tears the moment I heard the footfall of my children as they came near.

And when I was bed-bound due to violent vertigo from my Ménière’s disease, my husband or my parents would take care of my kids, keeping them busy to reduce the impact of my incurable disease upon them.

And sometimes, just sometimes, one of my three kids would quietly stand beside my bed and hold my hand for a moment in time. A moment in time that meant the world to me.

There’s a new book out. An important book. Not just for people who suffer from Ménière’s disease, but for anyone who has or has had vertigo, hearing loss or tinnitus.

The global Meniere’s community has a goal – to stop that vertigo, that tinnitus, that hearing loss, not just for people with Meniere’s, but for all people from all walks of life.

Money raised from book sales will be donated to research.

Imagine not having vertigo anymore.

Imagine not having tinnitus anymore.

Image hearing loss being a thing of the past.

Can you dare to imagine being you again …

Dear Ménière’s has been labelled as extraordinary, a life changer and a much needed book by early readers. It’s available at online bookstores as a print book and eBook

Here’s some links to Amazon:

Hardcover www.amazon.com/Dear-Menieres-Letters-Global-Project/dp/064515816X/

Paperback www.amazon.com/Dear-Menieres-Letters-Art-Project/dp/0645158178/

eBook www.amazon.com/Dear-M%C3%A9ni%C3%A8res-Letters-Art-collection-ebook/dp/B0C4VG8HFY/

And now to inject some humour for our kids – Captain Vertigo.

Finally, enjoy some letters to Ménière’s …

Dear Ménière’s,

I wish I could stand at the ends of the earth, where the winds blow swiftest, and feel the gentle sway caused by the blowing, not by my lack of balance, and have the winds blow away the tinnitus and the brain fog.

To have, for just one moment again in time, the silence of sound.

The clarity of mind.

To feel energised by life and not drained by it.

I imagine standing on a windswept shore. The noise I hear is the rustle of seagrass, the blowing of the southerly wind, the heave and heft of the ocean. Sea salt and sand pepper my skin. The incessant ring in my ears is quiet, drowned out by the oceans song or swept away, I neither know nor care, I cannot hear it.

The salty air fills my lungs, its brusqueness blows away the ever present fog in my brain. Thoughts, swirling vaguely in my brain, come to the forefront. They take shape, as clear and sharp as the broken shells beneath my feet. I’m not moving through a miasma, I’m as clear as the sun shining through the water that rolls onto the sand and back out again.

Each deep breath clears more fog from my head and returns more of me to myself, as if the real me lives out there in the ocean, waiting to be breathed in on the winds.

I miss who I was.

Kelly

Ménière’s disease since 1998

Without Warning

Here it comes.

Deep breaths. Find your focus.

Radiating tremors. Vision blurred.

For a brief moment, numbness.

Knowing the dark wave is about to consume you.

Deep breaths. Screaming inside,

“NO! Please God, not again. Not here. Not now.”

White knuckles desperately trying to hold steady.

Sweat pours. Heart racing.

Every line bends. Every curve vibrates.

Close your eyes and it will find you.

Even in darkness you twist and turn.

Gut is writhing in distress.

So violent yet completely invisible for others to see.

Empathy is shared with whispers of doubt.

Solace too far to reach.

Independence lost.

Dignity robbed.

A bright future shadowed in fear.

In time, tremors dissipate and vision clears.

Th e agony is rewarded with short lived joy.

Without haste, the crippling fear of the next one looms.

Micaela Grady

Written 9/8/2021

Ménière’s disease since 2007, Vestibular Migraine: 2021

Dear monster,

You are …

AKIN TO SHIT on a shoe trodden through a carpeted home,

A 6 HOUR LONG podcast with a voice so monotone.

Like riding a bike with a constantly falling off chain,

A summer garden party that is RUINED BY THE RAIN.

The spilt glass of water that calculatedly covers one’s crotch,

Like paying for Netflix then discovering there’s barely anything good to watch.

The SOGGY WET SOCK and also the HOLE IN THE BOOT,

Like discovering HALF A WORM after biting into some fruit.

A SALT AND VINEGAR CHIP on a fresh paper cut thumb,

The APPROACHING BEAST IN THOSE NIGHTMARES where we are unable to run.

Truth is, you are SO MUCH WORSE than all these examples by a mile,

This is me keeping it light, and trying my damn hardest to CREATE A SMILE.

Colin (That Monster Ménière’s)

Diagnosed, 2019

Instagram: @that_monster_menieres

A massive thanks to Anne Elias (Sydney Meniere’s Support Group www.instagram.com/menieres_support_au/),

Heather Davies (Meniere’s Muse www.instagram.com/menieresmuse/)

Steven Schwier (On the Vertigo www.instagram.com/onthevertigo/)

for helping with the Dear Meniere’s book.

Julieann Wallace is a multi-published author and artist. When she is not disappearing into her imaginary worlds as Julieann Wallace – children’s author, or as Amelia Grace – fiction novelist, she is working as a secondary teacher. Julieann’s 7th novel with a main character with Meniere’s disease—‘The Colour of Broken’—written under her pen name of Amelia Grace, was #1 on Amazon in its category a number of times, and was longlisted in 2021 and 2022, to be made into a movie or TV series by Screen Queensland, Australia. She donates profits from her books to Meniere’s Research Australia, where they are researching Meniere’s disease to find a cure. Julieann is a self-confessed tea ninja and Cadbury chocoholic, has a passion for music and art, and tries not to scare her cat, Claude Monet, with her terrible cello playing.

Julieann Wallace ~ author (julieannwallaceauthor.com)

www.instagram.com/myshadow_menieres/

www.instagram.com/julieann_wallace_

A Time of Gifting – from me to you

December 23, 2021.Reading time 3 minutes.

As Christmas draws closer, I am reminded of all those years where I would start to worry about whether I would be unwell, and have a four hour vertigo attack on Christmas day, ruining everyone’s plans, or whether something I ate would set off a cluster of vertigo attacks, debilitating me for nine days out of fourteen.

Thankfully, gentamicin injected into my middle ear in 2004, destroying my balance cells, stopped my Meniere’s vertigo attacks – an answered prayer. But sometimes, in the back of my mind is always the thought, “What if the vertigo returns?”

I have to consciously choose not to focus on that thought, instead, focussing on the positives. So here’s something I’d like to gift to you.

I’d like to gift you a FREE eBook copy of my bestselling novel that has been raising awareness about Meniere’s disease, which shares similar vestibular symptoms that COVID patients have experienced – vertigo, hearing loss, brain fog, tinnitus …

I pleased to say that ‘The Colour of Broken’ was longlisted earlier this year (2021) to be made into a movie or tv series.

And it has been an Amazon #1 in its category, three times.

Grab a copy and see what all the fuss is about. It’s FREE on the 23^rd, 24^th and 25^th of December, 2021.

It’s downloadable on iPhone, iPad, android tablets, android phones, or on your computer. Here’s the App: https://www.amazon.com/b?ie=UTF8&node=16571048011

If you read the novel, I hope the story touches you where you need to be touched.

Wishing you a very merry Christmas filled with joy and thankfulness.

XX Julieann

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

A Gift for Christmas

December 1, 2021.Reading time 7 minutes.

Meniere’s disease – a manic, violent, debilitating, depressing, disgusting, deplorable, despicable, devastating, damaging, distressing, diabolical monster of a disease that makes you vulnerable and defenseless. It takes, and never gives back.

It’s now 26 years of living with my shadow, Meniere’s. But once, Meniere’s was not just a shadow, it was a monster, as it wreaked havoc in my life, sucking out every ounce of happiness I had, throwing me into the deepest, darkest pit, searching on my knees for the missing pieces of me.

In 2002, after a particularly violent and long vertigo attack, I cried under the running water of the shower. There, my gut wrenching sobs would be muffled, and my tears would become invisible as I tried to hide my deep sorrow, and absolute exhaustion of faking being well. I didn’t want my three children to hear me falling apart. I didn’t want my husband to know how broken I was. And it was then and there that I made a vow. I wanted to help find a cure for Meniere’s disease in whatever way I could.

In 2004, I had one shot of gentamicin (the full dosage, not the low dose given now to preserve hearing). It stopped my vertigo, and I was able to reclaim my life.

Since 2013, I have volunteered twice as a Meniere’s research subject at the University of Queensland (Australia) Brain and Mind Centre, released two Meniere’s picture books (Vanilla Swirl for mothers and Blueberry Swirl for Fathers, both gorgeously illustrated by the talented Shez Kennington), and 2 novels – The Colour of Broken with a main character with Meniere’s disease, and the sequel, All the Colours Above, with Meniere’s disease in it again, to raise awareness about Meniere’s disease. I donate 100% profits to research of the University of Sydney Brain and Mind Centre, where they have a dedicated Meniere’s disease research team.

If you’d like to purchase any of these:

Vanilla Swirl

Blueberry Swirl

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

All the Colours Above: print book & ebook

In January 2020, I released a Yearly Meniere’s Journal in response to the emotional pain I absorb, witnessing people struggle in the many Meniere’s support groups I am in. While I was reading comments, I thought back to before I had a gentamicin injection to stop the vertigo, and what I used to take with me to my ENT – it was a daily journal of my symptoms. And so I created one for Meniere’s Disease for people to use.

Roll-on to November 2021, and there seems to be more and more people being diagnosed with Meniere’s Disease, struggling to understand it and how they can take control of their lives. So I revisited my January 2020 Journal, added more details, and shortened the book to just 3 months so it would be more affordable. It’s a valuable tool, and perfect for looking for patterns and tracking triggers, and for taking to your doctor or ENT to show them exactly what you are suffering daily.

A gift for Christmas

The new journal is hot off the press, and I want to gift you the FREE PDF to download and print out.

daily-detailed-3-month-menieres-disease-journal-december-2021 Download

It’s also available as a print book if you would prefer – 100% profits are donated to Meniere’s Research Fund Inc at the The University of Sydney and Macquarie University

Purchase the print book here for Australia Daily Meniere’s Journal – 3 Month : Wallace, Julieann: Amazon.com.au: Books For USA Amazon.com: Daily Meniere’s Journal – 3 Month: 9780645158106: Wallace, Julieann: Books For UK Daily Meniere’s Journal – 3 Month: Amazon.co.uk: Wallace, Julieann: 9780645158106: Books Also available at any online bookstore e.g. Booktopia Daily Meniere’s Journal – 3 Month by Julieann Wallace | 9780645158106 | Booktopia , Barnes and Noble Daily Meniere’s Journal – 3 Month by Julieann Wallace, Paperback | Barnes & Noble® (barnesandnoble.com) Powell’s Daily Meniere’s Journal – 3 Month: Julieann Wallace: Trade Paperback: 9780645158106: Powell’s Books (powells.com)

Wishing you a very happy Christmas, and looking forward to us finding a cure in the very near future, or even something that will successfully control all of our symptoms, one that works for everyone, not just for some.

The spark of hope can never be extinguished!

Julieann Wallace is a multi-published author and artist. When she is not disappearing into her imaginary worlds as Julieann Wallace – children’s author, or as Amelia Grace – fiction novelist, she is working as a secondary teacher. Julieann’s 7th novel with a main character with Meniere’s disease—‘The Colour of Broken’—written under her pen name of Amelia Grace, was #1 on Amazon in its category twice, and was longlisted to be made into a movie or TV series by Screen Queensland, Australia. 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.

Follow Julieann –

https://www.facebook.com/julieannwallace.author

https://www.instagram.com/julieann_wallace_/

https://www.instagram.com/myshadow_menieres/

My Hearing Addiction

February 11, 2020.Reading time 10 minutes.

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

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

Bliss. Happiness. Beyond thankful.

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

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

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

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

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

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

“It will change your life!”

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

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

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

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

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

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

Learning to hear is just like learning to read!

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

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

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

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

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

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

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

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

9780648424451-Meniere's Journal 14.01.20 2020_cov.indd

A Meniere's Art Series 7 illustrations without text, with text, with headings Freed8

9780648424437-Monthly Meniere's Journal 14 hc_cov.indd

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

Buy ‘The Colour of Broken’

Buy ‘The Color of Broken’

Buy the ‘Daily Meniere’s Journal’

Buy the ‘Monthly Meniere’s Journal’

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

About this blog …

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

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

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

It Will Change Your Life #12

January 11, 2020.Reading time 9 minutes.

It’s two days before my Cochlear Implant activation and I’m sitting at my desk, writing my new novel. An overwhelming emotion hits. I want to cry. I want to ugly cry. I catch my sob and swallow the lump in my throat and refocus on my writing, listening to cello music with my right ear, trying in vain to hear over the incessant extra loud tinnitus in my deaf left ear – five different noises. It always wins, even at music concerts. I haven’t heard silence for 23 years. Nothing I can listen to masks the sound of tinnitus.

Three years ago, I received a cello as a birthday gift. I wanted to learn to play it so I could hear the music in my memory when all my hearing was gone. I wanted to play it and feel the vibration of the music inside me, so I could burn into my mind how music would make me feel when I could no longer hear. The emotion of music. That is why we all love it so much. It makes us feel. Emotion. It’s what makes us human.

I’ve been playing the piano since I was eight, and can see the written notes inside my head when music is played. I can look at a sheet of music with no sound, and hear the sound of the inky notes on the paper. But it’s the cello I love the most.

You never realise how important something is until it is gone. Anyone who has something wrong with their body can vouch for that. Look after yourself. Not that I did anything wrong to lose my hearing. It is Meniere’s disease that has done that. I hate it with a passion – not just for me, but what it does to people. I know several people with Meniere’s who have taken their lives because of it.

No more. No. More. Enough is enough.

Sometimes, when I am playing music on my computer whilst writing or working, I stop and put my hands on the two speakers on my desk, and place my foot on the sub-woofer on the floor. I close my eyes and concentrate on the feel of the vibration. The vibration of the high and low sounds and everything in between. The light vibration. The strong vibration. The combination of vibrations.

I would love it. And hate it.

I would love it because I could still hear it with my “good” ear.

I would hate it because I am losing hearing in my “good” ear as well. It would kill me each time, knowing that one day I would never hear music again while walking the Earth. Did I do something to cause this? It tortures my mind if I let it. Then I am reminded that my life is all the more richer because of what I have been through.

It’s the day before activation.

I’m almost going into a panic. Breathe. I feel like a bird that has been trapped inside a cage for too long for it to remember freedom, and when the door is opened for it to fly from its prison, it stays there, because it feels safe.

This is me. A prisoner in my own body. I’ve had Meniere’s disease for 25 years this year. Nearly half of my lifetime. To be honest, there are many days that have been hell. Friends and family never saw that. They only saw the happy me. The one wearing the mask, fooling the world that I was okay. I faked being well. I’m a pro at it. I can’t remember what it’s like to feel “normal”. My life with Meniere’s disease is lived within strict limits as to what I can do. What I can eat. Choosing to isolate myself from social activities because I can’t hear, or I am scared of having a vertigo attack, or the worst one – rejection – because of my hearing loss and I can’t participate, or because I have answered a question wrongly because I couldn’t hear them, and I didn’t want to ask them what they had said for the fifth time.

To have no vertigo. No tinnitus. And have hearing in my left ear again … what is that? Is it even possible? What will I become? Will I still be me?

I admit. I am struggling big time. So I keep working on my new novel.

I’m 13,000 words in, and it keeps me from dwelling on the upcoming, perhaps, life changing event tomorrow. In every Cochlear implant group I have joined, the words keep being repeated, “it will change your life”.

But how? Is it that I will be able to hear from my left ear again? And that’s it. What exactly will it change in my life? Will I like it?

Activation Day…

Cochlear Implant activated. My mind blown.

My brain is scattered as I write this blog.

A thousand tears of feelings and thoughts, marvelling at technology – invented in Australia. Eternal thanks to you, Professor Graeme Clark.

I have warned my family – “Danger. I may break into unpredictable sobbing at any time. Good tears. Very good tears.”

I am overwhelmed by feelings of intense happiness. Feelings of release from the Meniere’s prison. A billion memories of my life with Meniere’s and what I have been through. The vertigo. The abhorrent vertigo of hell that takes your hearing. The darkness of depression that wants to take your last breath.

I feel like I have been freed.

I can’t write anymore today … I am too overwhelmed with emotion, and noise, and information. The world is so unbelievably noisy with a Cochlear Implant.

When the impossible becomes possible. I am so beyond thankful …

Next post … during activation xx

About this blog …

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

Meniere’s Journal – coming to Amazon soon.
Available for pre-order at https://www.lillypillypublishing.com/product-page/meniere-s-journey-pre-order

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 #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