Dear Mama, I see you wiping your wet eyes

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 Gift for Christmas

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.

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/

Learning to Hear

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

bear-3663438__340

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

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

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

Yeah Nah. Australian slang for no.

Yeah nah

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

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

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

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

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

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

brain_senses-56ccf48f5f9b5879cc5ba0e6

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

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

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

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

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

Principles of neuroplasticity

The brain wastes nothing…

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

Next blog – Learning to Hear is like Learning to Read

Julieann Wallace 300 dpi

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

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

MD weather forecast

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.

 

Love Letter To My Left Ear

To My One and Only, Dear Left Ear,

I know you tried to keep our hearing. I know you tried so hard for so long. You battled against the Meniere’s beast with reckless abandon. You fought hard against the inhumane, vicious, violent vertigo attacks. Together we struggled. Together we cried beyond a thousand tears filled with hope, asking for mercy, until we had no more tears to collect in our bottle of deep sadness, of stolen dreams, of a normal life to live.

‘Why?’ we asked. ‘Why us? Why anybody?’  But there were no answers.

Our world of hearing became muted, little by little. Stolen under stealth within vertigo attacks, leaving nothing but the impossibly incessant loud tinnitus as the flat line of hearing loss took hold – a confirmation of deafness – my brain desperately searching for some sort of hearing, but finding none, so instead, it made up its own sounds; a symphony of incessant annoying pitches, squeals, drones, beeps, cicadas, bees, waveless oceans, electrostatic buzzes, louder than anything I could hear with my remaining hearing ear.

Dear Left Ear, I acknowledge that you bravely and fiercely battled the Meniere’s monster since 1995, with all of your might. An internal battle unseen with the oppressive, invisible, incurable illness. But it wore you down, until you had no more to give. And I thank you for your huge effort in fighting for us.

I heard it too, when the audiologist said in 2019, that we had little to no hearing, then called you a “dead” ear. My hand gently touched you and traced your outline after that blow to the heart.

“Dead”. It’s such a final word. Complete. Absolute.

“It’s not dead, just dormant!” I wanted to yell. But I didn’t, as my heart cracked, the brutal sting of that word cutting so deeply I wanted to cry. Yet, it made me realise how much I loved you, even though we had been to the deepest, darkest pit of depression together, grappling for hope, desperately searching for a cure for Meniere’s disease, so I could have you back with your miracle of hearing so profound and miraculous.

Meniere’s disease. The cruel and unforgiving Meniere’s disease. It takes and never gives back…

Dear Left Ear, we are rising against the Meniere’s monster with a vengeance. No longer will we live our life in submission to the incurable illness. It may be incurable, but we can take a stand. We can take action. We are going to take control of our life. Our life. We won’t let Meniere’s decide our path for us and continue to beat us while we are down.

This is war!

Dear Left Ear, together, we will take back what is ours. We will no longer have vertigo. We will be able to hear again. We will resuscitate your heart of hearing, and tinnitus will be drowned out with sounds of voices, music, and the harmonies of nature.

The battle line is drawn. Our swords unsheathed.

Meniere’s Weapon – 10 years of violent abhorrent vertigo.

My Weapon – Balance cells destroyed in 2004 by gentamicin, to stop the vertigo (after many other attempts using natural products, acupuncture, sound therapy, medications and medical procedures etc), then vestibular rehabilitation – battle won.

Meniere’s Weapon  – Hearing loss and tinnitus.

My Weapon – Cochlear Implant to restore hearing and eliminate tinnitus.

Let the hearing battle begin!

Dear Left Ear, let’s do this.

With love,

Julieann

P.S. We must never forget the medical practitioners who have helped us on this journey. Without their care, compassion and expertise, we would not even be able to enter the battle arena. 

P.P.S. We must never forget our friends and family who have supported us on this journey. Without them, we would not be able to enter the battle arena.

Artwork 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.

https://www.etsy.com/au/shop/FlowersForMenieres
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