Tag: Chronic illness

Dear Mama, I see you wiping your wet eyes

.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_

Dear Incurable Disease,

.Reading time 5 minutes.

Dear Incurable Disease,

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.