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_

Meniere’s Quality of Life …

6 days from death.

That’s the quality of life for a person with Meniere’s disease during an active vertigo attack. It’s been compared to someone who is 6 days from death by authors of this study – Meniere’s Quality of Life.

The study revealed the following:

— QWB scores: Meniere’s patients achieved a mean score of .505 on days of acute episodes and .620 on days without acute episodes. This compares with scores of normal adults (.810), very ill adults with life-threatening illness (cancer, AIDS (.616), non-institutionalized Alzheimer’s patients (.506), and AIDS & cancer patients, six days before death (.427)

https://www.newswise.com/articles/menieres-disease-quality-of-life?fbclid=IwAR1famOiDWiOqelzP99ONe8FuquAWbhaXNyyumhD3b40u8Qbg1TAZGCi8Zw

Earlier in my Meniere’s journey, I had read online that a doctor claimed it was 3 days from death …

My husband flinched when I quoted him those words. 40 + violent vertigo attacks year, each one lasting around 4 hours. Unable to move. Staring at one spot on the wall for the entire time. He was the spectator to my sad life with Meniere’s that pulled me into the darkest pit.

Nausea. Puking. Unbearable. Feeling like I am close to death. And doing that 40 + times a year.

6 days from death. Let that sink in.

Do you ever read something that hits you in the gut? Something so well written it describes your invisible symptoms so that others might understand it better.

Dear MONSTER, written by Colin (The Monster Meniere’s) does that. It’s from a book about to be released on June 1st 2023 Dear Meniere’s – letters and art – a collection.

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

This is Meniere’s disease. Vertigo. Hearing loss. Tinnitus. Brain fog. Debilitating. Life changing.

Meniere’s disease is said to be about the same prevalence as Multiple Sclerosis in the community, and yet, there is no funding for research, nor fundraising days in the community to bring awareness. Our medications (if they work) are costly and are not subsidised. Many people with Meniere’s cannot work due to unpredictable, long, violent vertigo episodes that leave them exhausted, causing them to lose their livelihoods, their confidence, their sense of self-worth.

6 days from death. Let that sink in.

It has been said that Meniere’s disease is the most livable disease with the highest suicide rate. If you’ve ever been in Meniere’s FB groups, you will read posts about people wanting to end their suffering. You will see others reaching out to them to help. Just one more day ….

I’ve had MD for 28 years now. How can I sit back and hope for the best for my MD family without doing anything?  

It’s like wondering why nothing good ever happens to me.

It’s like waiting for others to act, and then nobody does, because they are all waiting for others to step up for them.

Here’s the thing. You have to go out and grab opportunities.

You have to make things happen.

It’s active. Not passive.

SO here’s my active for my Meniere’s brothers and sisters, uncles and aunts, kids, friends, and that person down the street.

It’s time to give hope. It’s time to support our Meniere’s researchers to help us. Thanks to Anne Elias (Sydney Meniere’s Support Group https://www.instagram.com/menieres_support_au/), Heather Davies (Meniere’s Muse https://www.instagram.com/menieresmuse/) and Steven Schwier (On the Vertigo https://www.instagram.com/onthevertigo/)for helping with the campaign.

A global fundraiser – #menieresresearchgivingday  MAY 8

https://gofund.me/8a8b656b

It’s an I see you. I hear you. Let’s help.

Can you spare a dollar or two?

Give together. Give hope. Help a mate.

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)

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

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

Julieann is mindful of those who also have incurable diseases or are walking on the path of a diagnosis that is life changing. She 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.

Be kind. Always.