Dear Incurable Disease,

March 30, 2023.Reading time 5 minutes.

That’s you, Ménière’s. There’s a call out for submission for letters and art about you.

Apparently you’re the focus of a new book, a collection of writing and creativity.

Surely you don’t deserve such attention in this way?

What do you think they will say about you?

How kind you are?

How popular and well-liked you are?

Do you think you’ll be thanked?

We’ll see …

And the art?

What on earth would you look like on the canvas? In a photograph? Or other creative art mediums? Ha, a sculpture of you would be interesting!

Do you think you’ll be beautiful and lavished with love in each of those carefully placed paint strokes?

Will you be depicted up on a pedestal all high and mighty?

Will the capturing of your existence in visual form be so exceptional that an entire gallery will be dedicated to you?

Or will you look like the monster you are?

We’ll see …

Ménière’s, you’re finally being called out for the atrocious bully that you are.

Fingers are being pointed at you for torturing people with vile, violent vertigo, insanely loud tinnitus, nausea, hyperacusis, deafness and loss of balance. So debilitating are your attacks that some cannot find the strength to live with the symptoms anymore. How dare you?

Are you proud of the quality of life rating of 6 days from death with your repulsive, incrediblly fast room spinning vertigo that lasts for hours, sometimes days?

Fists are being shaken at you for your devious ways, hiding in the inner ear that is hard to get to.

Voices are being shouted, louder than our unremitting, loud tinnitus, to call you out from the cowardly darkness and into the light so you can be seen in all of your ugliness.

You thief. Stealing happiness, livelihoods, passions, friends, confidence, hearing, balance, joy, money, a normal quality of life, bringing us to our knees to search for the missing pieces of us.

Ménière’s disease. Debilitating. Life changing. Do you really think there is no cause, no cure?

We’ll see …

Ménière’s, research is discovering your mischievous ways. Research is planning an attack to take you down. How joyous that day will be when the doctor will say, ‘You’ve got Ménière’s disease. We can fix that!’

Never yours,

Julieann Wallace

Your turn. Here’s your invitation to write a letter or create some art to be published in the Lilly Pilly Publishing Letters to Ménière’s Global Project to raise awareness, proceeds being donated to Meniere’s research.

Furious and fast writing feels amazing!

https://www.lillypillypublishing.com/letterstomenieresproject

https://www.julieannwallaceauthor.com/

https://www.instagram.com/julieann_wallace_author/

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

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 in Australia 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.

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