It feels like there’s awareness days, weeks, and months for almost everything, connecting and educating people. Even odd and peculiar things. Like Popcorn Day, Nothing Day, Lost Sock Day, Punctuation Day, Handbag Day, Men Make Dinner Day, Fruitcake Toss Day, Nothing Day, Odd Socks Day, Put a Pillow on Your Fridge Day.
Except for Ménière’s disease.
Awareness Days for February 7, depending on what country you are in:
Rose Day
It’s Ice Cream For Breakfast Day
Yukon Quest
International Pisco Sour Day
National Black HIV/AIDS Awareness Day
Wave All Your Fingers At Your Neighbors Day
Send a Card to a Friend Day
National Ballet Day
National Fettuccine Day
National Periodic Table Day
e-Day by disconnecting from screens and embracing the world around you
Independence Day Grenada
Take Your Child to the Library Day
Safer Internet Day
My favourite is Ice Cream for Breakfast Day!
(Adobe Stock)
But now (drum roll please) there’s a new awareness day for February 7, on the US National Today Calendar – Ménière’s Disease Awareness Day.
A victory. For us. Recognition.
I would spin around in celebration, but you know, the vertigo of MD is a dizzy terror that no one wants to experience. But seriously, if you think it’s not that bad, please sit in an office chair, and let me spin you around as fast as I can for four hours, no stopping. Or, for some real fun, stay on that spinning ride at the fair for four continuous hours without getting off. And let’s not forget the loud tinnitus – often multiple sounds, ear fullness, hearing loss, loss of balance, anxiety plus more. It’s devastating, physically, emotionally, socially, psychologically, economically… My cochlear implant audiologist told me that Ménière’s is the disease that no doctor wants!
Backstory
I was instrumental in having this day recognised, but I can’t take all the credit for 7 February, World Ménière’s Day. I just continued it on. I originally saw other people share this graphic in 2018, and thought it was an officially recognised day.
After I searched like a detective, I traced the graphic back to a group called Moms with Meniere’s Disease. It was first posted on February 8, 2017.
I loved that she had created this (unofficial) day for us. But when I looked at the graphic, I thought, no one understands what Ménière’s disease is. So I tried to contact the admin of Moms with Ménière’s Disease to chat with her, to find out her name, and to ask for permission to use her idea and date. No success. In fact, the last post there was November 5, 2018.
So I decided to build on what she had created.
I updated the graphic, and added symptoms, so people could at least see what we were going through.
On February 7, 2024, after I posted the World Ménière’s Day graphic in the Ménière’s Disease Support Group, someone told me it wasn’t an official day. It was true, and it really annoyed me. So I decided to do something about it.
In January, 2025, I spent days on the internet researching international and national days organisations to try to get Ménière’s disease acknowledged as a day of recognition ready for February 7, 2025. I sent off emails that included detailed stats on Ménière’s s, lists of symptoms, famous celebrities, and the history of Prosper Meniere, the doctor whom the disease is named after. Many official awareness calendars required a doctor to apply for the day, but I still emailed them anyway.
No success.
The biggest organisation I emailed was the United Nations List of International Days and Weeks, with hope that Ménière’s would be recognised as an International Day, but I didn’t get a reply.
People were suffering. No one had heard of Ménière’s disease. I hated that we were invisible. And why should basketball get an official international day but not an incurable disease that destroys lives?
On February 7th, 2025, I posted these graphics to the Meniere’s Disease Support Group, founded by Glenn Schweitzer (Mind Over Meniere’s)
with the words…
“It’s World Meniere’s Day today.
It’s not an official day, but was started by someone a very long time ago. Last year I applied for it to be identified as a day of recognition, but it was rejected 🙁
Have a spin free day on this day of our acknowledgement ❤
And you have permission to use my Meniere’s designs if you like x”
Many people replied in support, but it was this reply by Jeannine that made my heart skip a beat.
Jeannine
“Hello Julieann Wallace. I saw your post and contacted the head of National Today who confirmed by email he would recognize it. I hope it happens – I’ll share it when I see it:) I believe this is a debilitating disease that more people need to know about bc it affects so many 🥺”
Thank you Jeannine! It is done. Meniere’s Disease Awareness Day 7th February. (I wanted a different picture to be used on the site, so it was inclusive of men and women – but we’ll take this as a win)
And my newest graphic for our awareness day – no AI was used to create it, to care for our earth.
Why the 7th February?
Dr. Prosper Meniere’s life dates: 18 June 1799 – 7 February 1862.
But the Ménière’s Disease Awareness Day is not finished.
We’re not finished.
Let’s aim for an officialInternational Ménière’s Disease Day, listed on calendars globally.
Can anyone help?
Julieann Wallace is an Australian 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, to help find a cure or successful treatment for everyone. 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, or her dog, Pablo Picasso with her terrible cello playing.
They say when life gives you lemons, make lemonade.
“They” obviously don’t have Ménière’s disease, or any other incurable, debilitating, life changing disease for that matter. If they did, they would say, ‘I’m sorry about your diagnosis. I hope a cure comes soon. Let me know if you ever need help with anything.’
I want to say that I am sorry that you have Ménière’s disease.
I wouldn’t wish it on my worst enemy. I have had it since I was twenty-nine.
I woke at 5am one morning in early January, 2024, with the words Ménière’s Man stuck in my head. It’s a book written about Ménière’s disease, by a man. I’ve never read it. But I know that people are thankful for the information inside it.
Then I thought, where are the Ménière’s books written by women? There aren’t many.
How about WOMénière’s? WOménière’s? woMénière’s?
Sure, you may be able to glean lots of interesting information from books written by men, but let’s face it, they don’t deal with holding the responsibility of keeping the household going like women do (mostly) – groceries, cooking, cleaning, childcare (if you do have a partner who helps you with that, you are truly blessed!).
Men don’t deal with menstruation and everything that entails.
Men don’t have babies.
Men don’t go through perimenopause and menopause.
Men don’t have the fluctuations with hormones like women do.
We women have the rough end of the stick when it comes to Ménière’s !
Researchers have uncovered countless ways in which women’s and men’s bodies react differently to the same diseases, due to our hormones. There is A LOT that female bodies go through during a hormonal cycle, a stark contrast to the experience of the male body.
And so it began.
I accepted my own challenge to write a book about Ménière’s disease for women, and started on it. I figured that I was more than qualified enough to write it, Ménière’s being with me for 29 years at the time of writing this book. Exactly half of my lifetime.
Mum of three. My Ménière’s started the year before my first was born.
Wife.
Teacher.
Ménière’s Research subject at the University of Queensland’s Mind and Brain Institute.
Gentamicin to destroy the vertigo after 9 years of trying prescription medicines, herbal medicines and other alternative treatments.
It was my honour to pen this book to help others. To describe the road travelled before others going through the same things.
To encourage.
To understand.
To give insight.
To give tips on surviving the Meniere’s jungle.
To say it’s okay. We’re in this together. You’re going to make it through.
To give hope.
I have put countless hours of medical research into Meniere’s Woman, and reading anecdotal stories by women and questions they ask on social media.
Plus my own experience.
It’s time to honor us. Women with Ménière’s .
On the pages you’ll find tips, hints, research, personal anecdotes, secret women’s business, pregnancy, motherhood, grand-motherhood, understanding, inspiration and mindset, self-care, a period and Meniere’s symptoms tracker and a Ménière’s Management Plan, plus lots more.
And because this is your book, add your own stamp and style. I have left blank pages for your to glue/tape in clippings, inspirational verses or images that speak to you in some way, or write them in. Be creative. Be you.
Here’s a peek at inside the book. Ménière’s Woman. Honoring you. xx
Profits from the eBook and Print book will be donated to Ménière’s research, as all of my Ménière’s books are. I don’t publish Ménière’s books for personal gain, but to help others.
Let me know what you think of the book if you purchase a copy. And, I hope that it helps you beyond what you thought it could. xx
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, to help find a cure or successful treatment for everyone. 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.
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)
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.
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.
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 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.
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.
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.
Just writing to let you know that your time is limited. A cure is coming. You stole pieces of us, and we want it all back.
Never yours,
Julieann
1am.
Hello world. Not sleeping!!! Tossing and turning.
My mind is stuck on writing letters. My mind is obsessing with writing a letter to Meniere’s disease to tell it what I think …
Dear Meniere’s,
Dear Vertigo,
Dear Left Ear,
Dear Hearing Loss,
Dear Brain Fog … wait … is that brain fog (shakes head), what was I thinking again?
Dear Ear Fullness,
Dear TINNITUSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSS!
Dear Me Before Meniere’s Disease,
To My Dear Children, I’m sorry …
Dear, Dear Meniere’s Disease, we have to talk …
I feel like going to the window, opening it and yelling out to the neighbourhood, ‘I’m awake, everyone! I think I’m going crazy!’
We need a cure. We need a cure.
Except, we need money to fund the researchers …
Could we create a book of letters to Meniere’s and donate the money to research?
Could we use the book to show doctors and ENTs and disbelieving friends and family what we go through?
Could the book be used when applying for disability support so they can truly understand?
And then I’m scrolling through Meniere’s social media groups.
Symptoms.
Frustrations.
Hopelessness.
Despair.
HELP!!!!!!!!!!!!!!!!!!!!!
Misery dripping from every word of a life lived with Meniere’s.
I feel like crying.
I have to get off Facebook for a while before it pulls me back to the dark abyss of Meniere’s.
I close my eyes and take a deep, calming breath.
It’s time to create the Letters to Meniere’s book. I’m stepping up awareness for Meniere’s disease, and seeking revenge by creating a satisfying book of Letters to Meniere’s, written by the people who live with the condition.
Yep. Let’s do this!
Gather a team of inspiring Meniere’s Ninjas to help bring the book to fruition. CHECK
Steve Schwier, who rode an e-bike 1,400 miles from Denver, Colorado to Columbus, Ohio to bring awareness to Meniere’s Disease. His difficult and gruelling ride is chronicled in his memoir, “On the Vertigo: One Sick Man’s Journey to Make a Difference”.
Anne Elias, mover and skaker of the Sydney Meniere’s Support Group, and instigator of our amazing Webinars with Meniere’s professionals.
Please join the Meniere’s community as we write letters to Meniere’s disease. We’d love for you to share your story, or, a story, through a letter. Sign your letter off with your first name, or a fictional name. Go to https://www.lillypillypublishing.com/letterstomenieresproject for more information and guidelines. Profits will be donated to Meniere’s research.
Let’s laugh together, cry together, and … understand. That’s what our letters and artwork will do. That’s what we can do. It takes a village.
We’re on a mission. A terribly important mission.
Dear Meniere’s,
Imagine a world where Meniere’s disease, that’s you, has been eradicated …
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 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.
It’s early in the morning and I’m buzzing with excess energy. I’m restless, and failing at trying to focus on getting ready to go to work to teach secondary students. My thoughts are all over the place and I’m filled with an ocean of hope for the future of Meniere’s disease. It’s also the day after I flew to Sydney to attend the Macquarie University for a tour of the School of Engineering and Hearing Hub. Yes, I wagged school to fly interstate. It’s for a Cochlear appointment, I told my employer, leaving out the fact that the appointment was a 1hr 35min flight to Sydney.
Yesterday, I was up at 4:30am to start my day. After the flight to Sydney I caught three trains to Macquarie University Station. Anne said she would meet us here. I looked around. No Anne. Maybe she meant not right here, but at the entrance of the station. I looked up at the exit. Two massive escalators, around 100 steps each. How far underground were we?
I reached the top of the stations and stepped out into the daylight and looked up. It was such a beautiful day in Sydney.
‘Julieann?’ I shifted my gaze, expecting to see Anne. But it wasn’t her. ‘Yes,’ I said, assuming it was one of the thirteen Meniere’s people who were gathering at the Macquarie University today. ‘I’m Eleanor*. I recognise you from the Zoom sessions.’ I smiled then remembered I was a Meniere’s guest speaker at one of Sydney Meniere’s Group Zoom sessions. Technology connects us globally. ‘Hi, Eleanor.’
And then our conversation started. Eleanor told me her Meniere’s story and I asked her questions. At once her Meniere’s traits appeared, those traits that people with Meniere’s know so well. That turn of the head to the better hearing ear. The ‘Can you say that again?’ request. The stop in the conversation when the traffic noise became too loud. What a terrible place to share stories. I watched once again as she turned her good ear toward me to hear what I was saying. My heart cracked. That was me once, trying to listen, trying to lip read, trying to fill in the missing or misheard words to make sense of what was being said. The nodding and smiling when I should have been answering a question. Eleanor needs a Cochlear Implant. Like me. It would make her life so much easier. Dear, dear Eleanor. I wanted to hug her so tightly that all her broken bits from Meniere’s would be pushed back together. Her life story … I took a deep breath, what a strong woman she is. I was in awe of her.
And then another person arrived. ‘Julieann,’ she said. ‘I’m Amy*.’ She knew my name before I could say anything. She told me her Meniere’s story. It was her neck that was out, and once she had it worked on, she hadn’t had vertigo since, but she still has the other symptoms.
Then Anne appeared. The shaker and mover, Dizzy Anne. The Anne who started the Sydney Meniere’s Support Group . Anne who organises regular Zoom meetings with guest speakers to educate, support and help people with Meniere’s disease: Meniere’s Support Group – Dizzy Anne – YouTube. Legendary Anne with a heart of gold.
More people appeared as if from nowhere. A head count. Two people were missing. They couldn’t make it. We all understood perfectly. That horrid beast of Meniere’s disease. You can make plans, but it is the Meniere’s Monster that destroys them for you. My heart sank for them and I started to slip into that dark, dark place of long ago when that was me. When Meniere’s had taken so much away from my life and I was on my hands and knees trying to find the missing pieces of me. I lifted my face to the sunshine, thankful for my Meniere’s journey, thankful that I was able to be a voice for sufferers, and thankful that I was here today to meet the researchers working to find a cure for us. It must be coming soon. Hope.
After finding our bearings we were on the move, headed toward the Macquarie University Hearing Hub Café where our day of insight would begin.
Cochlear Australia’s global headquartersMacquarie University Hearing Hub
10:30 – 11:00
Piccolo Me MQ Hearing Hub Café
We entered the café I looked for our people. Our Meniere’s researchers. They belonged to us. A noble type of HumanKIND filled with a passion to help others, or perhaps because they loved the academic challenge to find missing pieces to solve medical problems, maybe a mix of both. What is their story? What is their motivation? These were the bravest of brave researchers, tackling a terribly difficult disease to find solutions for, with the ultimate goal of finding a cure. They are my Meniere’s Superheroes.
They stood together with an easy confidence. Smiling. Their Clark Kent personas hid their superhero status. In my curious and imaginative mind I gave them each a superhero cape. Then I joined the line to order a chai latte.
I turned to see who was behind me. ‘Julieann. I recognise you from our Meniere’s Facebook group. I’m Mark*.’ I smiled. ‘Hi, Mark. How are you?’ And then we fell into an easy conversation. He told me he had a small spin while driving to the university. He shared his Meniere’s story with me. I understood completely. He also told me how he had lost his hearing in his right ear when he was young, most probably due to the measles. I knew he needed a Cochlear Implant. It would change his life.
I discovered how at ease I was in the group of Menierian’s. I’ve only met two very small groups of people with Meniere’s twice in my 26 years of this awful disease. We all suffered the same symptoms. We had been through the same journey. We were friends, instantly. No judgement. Only sincere compassion and empathy…
The Meniere’s researchers approached us and mingled while we sipped on our barista made tea, coffees, chai lattes, cappuccinos and hot chocolates, gifted to us, all paid for like we were the superheroes, and they were visiting us. I was taken back by their kindness.
11:00 – 11:30am
We walked to the Lecture Theatre on Level 1. The door opened to the impressive lecture room. I gazed up at the pitched floor with rows and rows of seats. It took me back to my own university days, and indeed of a teaching room at the school where I taught. I eased myself into the seat with a quiet confidence, keen to hear about their research.
Professor David McAlpine, Academic Director of Macquarie University Hearing at the Macquarie University Australian Hearing Hub, awardee of the prestigious Einstein Fellowship, welcomed us to the Macquarie University and walked us through our program today.
Then he introduced us to the Meniere’s research team, who are building a pipeline to cure Meniere’s, bringing together a global-leading team: Dr Chris Pastras (Director of Meniere’s Disease Research), Associate Professor Mohsen Asadnia, Associate Professor Payal Mukherjee ENT (who was unable to attend today), and then he added … you.
He spoke of the importance of listening to people with Meniere’s disease. They want to help us, and they can’t do it without our involvement. Future tours and information sharing will continue with open invitations, as today’s was.
I sat there in awe as he drew us into his world of research, our world of Meniere’s. My memory cells are bursting with Meniere’s information, soaking in every single word, enraptured by the Professors McAlpine’s passion for research and trying to cure, or at the very least, find solutions to symptoms so Meniere’s people can live a quality life again.
And then came the words that had me in a spin. He told us about an implantable device that will allow us to turn off the vertigo and restore our balance. I couldn’t stop myself from mouthing “WOW!” I held my breath and shifted in my seat as my eyes pooled with tears. Then I inhaled deeply to calm myself. This … is what we have been waiting for: to be able to control our vertigo without the destructive intervention, without sac decompression, without the use of gentamicin, without having a vestibular nerve section, but to just have an implantable device that acts like a switch to turn off the vertigo … mind officially blown. An answered prayer. This is a life changer. This is a life giver. This means finding our self again, the one before the physical, social, emotional and psychological broken pieces of us, after Meniere’ Disease entered our lives uninvited, shattering our sense of self – who we were, our self-worth, taking our happiness, our confidence, our friends, our social lives, our enjoyment of being able to eat whatever we wanted, our ability to take part in any physical activity offered to us.
Develop devices to monitor potassium and formation of endolymph hydrops which would warn the patient of an impending MD attack, allow activation of smart drug delivery systems and help to understand the progress and severity of the disease
Artificial endolymphatic sac to replenish and ionically modulate endolymph.
Innovation: ENGINEERING NOVEL MICRONANO DEVICES
Development of highly sensitive potassium sensor
Inner ear fluid – make an implantable sensor to change the ion concentrate – potassium
Make an artificial sac to eliminate Meniere’s – has been tested and published.
They have made a membrane that only lets potassium pass through.
Professor David McAlpine thanked our presenters and we applauded. His passion for everything that had been spoken about today and about Macquarie University and their cutting edge science applied to Meniere’s was eagerly absorbed by me, and my imaginary bucket I brought along to fill with hope from today was already full. Wagging school for the day was totally worth the guilt of missing class with my students, but also knowing that they were in good hands with another teacher who would follow the plans I had left them.
11:30 AM-12:30 PM- Australian Hearing Hub’s lab visit
We left the lecture room and followed Professor David to our next stop on the tour. It was the Australian Hearing Hub Lab. The door opened and we entered the lab room of Cochlear Implant innovation and ground breaking research.
This room was named after Professor Bill Gibson who is a renowned ear, nose and throat (ENT) surgeon and world leader in cochlear implantation and Menière’s disease. My heart glowed. It was Professor Bill Gibson, whom my own ENT phoned to ask for advice before he administered my gentamicin back in 2004. It was Professor Bill Gibson, who read my Meniere’s novel, The Colour of Broken in 2018, and invited me to the Meniere’s Symposium in Sydney, 2018. It was Professor Bill Gibson, whom I emailed to apologise for curing Meniere’s in my new novel, All the Colours Above (2021), to which he replied, ‘I am interested in using nanorobotics to deliver medication to the endolymphatic sac. Mohsen Asadnia is an engineer who is very interested in Meniere’s Disease and is a leader in nanorobotics. You can google him. He is also building models to explain the cause of the vertigo.’
Two researchers spoke. My biggest apologies that I can’t acknowledge them by name, but I was in system overload with being present in a laboratory where the technology for my own Cochlear Implant was created once. The Cochlear Implant that changed my life. After looking around at the equipment, and the very place where Cochlear Implant Surgeons from all around the world come to learn how to perform Cochlear Implant Surgery, or where they watch live demonstrations on donated body parts from people who kindly give their physical body over to medical science after death, my eyes found the researchers again. More superheroes.
We saw the inner cochlear implant device that is placed under the skin on your scalp, and watched how the 22 electrodes were inserted via their ear prototype used for surgery instruction.
And then we were able to ask questions.
One of the people on our tour group asked about the part of the Cochlear Implant you wear on your head. The processor. I spoke up and showed them my Kanso 2, and how it attached to my head. I also told them about the year 2019, at Sports Day at school, when I saw a Year 7 boy who had cochlear implants on both ears. I spoke to him and was blown away by his perfect speech when answering my questions. He never once asked me to repeat what I was saying. He also happened to be Dux of Year Seven that year. He was the person who finally helped me to decide to get a Cochlear Implant. He’s in Year 10 now, and we always smile at each other and share CI information. He’s an amazing young man.
After a group photo we were lead into another room.
More Cochlear Implant research.
They are in the midst of human trials, applying hearing cell growth stimulator solution (gene therapy) into the cochlear with the electrodes at the time of the Cochlear Implant surgery. The hearing cells are stimulated to grow and attach to the electrodes to improve cochlear implant hearing even further.
We were also shown the half a million dollar medical robot that will be used by Cochlear Implant surgeons in the near future. It’s an effective tool to overcome the surgeon’s limitations such as tremor, drift and accurate force. They joked about how good the upcoming generation of surgeons will be at controlling the joystick of the robot with all their experience in playing video games and online gaming during their youth.
We proceeded onto the next room. On shelves were rows and rows of medical equipment and three large industrial fridges. ‘Donated totally intact vestibular systems,’ I was told. ‘We don’t want to scare you with the contents.’ I wanted to tell her that’s what I planned to do with my ears – to donate them to medical research to help people with Meniere’s disease. I also wanted to tell her that I love biology and anatomy and the sciences, and seeing body parts like that wouldn’t phase me. We moved into a long room next. If was filled with equipment for surgeons to practise Cochlear Implants. Impressive. We are in good hands. Onward bound, we entered the Anechoic Chamber – the quietest place on earth. The purpose of this room is to test sound, and to test hearing devices. The walls and ceiling was lined with fiberglass wedges. Beneath us, we stood on mesh that covered an open two floor drop below, where again the floor was covered with fibreglass wedges. This anechoic chamber at Macquarie University is the only one in the Southern Hemisphere. Explore the anechoic chamber here: https://my.matterport.com/show/?m=wPTdUHH5PNV
I was thrilled to be inside this space. I had read about these rooms. Inside the room it’s silent. So silent that noise is measured in negative decibels. It’s a challenge for people to be in the chamber. But your ears adapt. In the absence of external sounds, you will hear your heart beating, sometimes you can hear your lungs, even hear your stomach gurgling loudly. You become the sound. If you are in the room for 30 minutes, you have to be in a chair, as people have trouble orienting themselves and even standing. It is said that the longest anybody has been able to bear it is 45 minutes. I wondered about us Menierians. With our loud tinnitus, many with multiple unbearably loud tinnitus sounds, would we last longer than 45minutes? Those of us Menierians who have had their balance cells destroyed, would will still be able to orient ourselves and stand due to the fact that we have relearned to walk with the absence of our vestibular balance senses? I’d be open to the challenge to be in the chamber as a person with Meniere’s disease. Fascinating. You can read more about anechoic chambers here: https://www.scienceabc.com/innovation/anechoic-chambers-quietest-most-silent-rooms-work-made.html
12:30 PM – 1 PM Lunch
I approached the long table of prepacked lunches as a person with Meniere’s disease. You know what we do, we look at the food and categorize whether it is safe for us to eat – how much salt content would be in the foods; would it give me brain fog, ear fullness, or increase the sound level of my tinnitus, would it be enough to throw me into a vertigo episode? I wondered what would be offered for lunch by the Meniere’s specialists, knowing our reaction and limitations with salt. I was well pleased to find that the packaged lunch was well thought-out with our diet restrictions in mind, and so very thankful for their kindness once again. But still, when I opened the box of food, I deconstructed the Turkish bread (other types of bread were available as well) to see exactly what was on the roll (chicken, lettuce, tomato) with a side salad of carrot, celery etc, plus a chocolate roll. I ate what I knew wouldn’t affect me.
1 PM- 2 PM (Discussion and planning)
With our bellies full and Meniere’s stories shared over lunch in the glorious winter sunshine (20 degrees Celsius), we headed to another room of grouped tables and chairs for discussion and planning. This is the part of the day I was unsure about. It even made me feel a little nervous. How could we, the Meniere’s sufferers, be part of planning? What could we possibly provide the highly intelligent doctors, professors and engineers, that could help them?
That carpet – I know what you are thinking …
This session opened and we heard about funding for Meniere’s research. Dr Romaric Bouveret – Director of Operations and Strategies spoke, as well as another guest speaker (I apologise for not recording her name). We heard that funding for Meniere’s is hard to obtain, and they are actively applying for grants, once again. We also heard that Meniere’s comes under the umbrella of “Hearing” at the University, and so they have access to some funds through there. The sigh of relief in the room was palpable. We were also assured that any donations sent to the Macquarie University for Meniere’s (which can be chosen from the drop down menu on the donation page) would be totally committed to Meniere’s research.
And then we were given the chance to speak. At first, some of us spoke about how they may be able to find ways to donate money – this is a hard thing to do when Meniere’s has stolen your means on income.
I too, joined this thread. I spoke about my two Meniere’s novels (The Colour of Broken and All the Colours Above) that I have donated a substantial amount of money to research from sales. I spoke about the impact of having a story with a main character with Meniere’s, and that a young girl in the US gave her mum a copy of The Colour of Broken … afterward, her mum came back to her begging for forgiveness, as she thought her daughter had been faking the symptoms. I also told the researchers that The Colour of Broken had been long listed, twice, to be made into a movie. Awareness for us. For Meniere’s. Professor David McAlpine stated the importance of the Arts (writing, art, drama, music, dance, movies, film and television) for helping to raise awareness and funds. And that collaboration across fields was important. That connection to people was important, and the Arts helps us to do that.
Then with tears, I spoke about how I’ve talked Meniere’s sufferers online, out of suiciding. I don’t know if they wanted to hear that. But they needed to hear that. They need to know how Meniere’s affects the lives and hearts and souls of people. They need to know how destructive it is. We want our lives back.
Dr Matthieu Recugnat spoke to us next. He talked about tinnitus. He talked about hearing research, and he talked about a program they have created called Tinnibot, the world’s first virtual coach (an app) that provides tinnitus support anytime, anywhere.
Professor Dave McAlpine asked, what else do we need?
I suggested they build a website that keeps people up-to-date with the latest research. I think it’s important to keep in touch with the researchers. Making connections is about hearing the stories of real people, including the Meniere’s research team stories.
2 PM -2:30 PM (Cochlear building visit)
Unfortunately we had gone overtime with the discussion and planning. And yet there was so much more to say. It was decided that the Cochlear building visit would have to be included in the next tour. I’ll definitely be attending that tour.
2:30 PM – End of the visit
I think I can speak for all of the Menierians present today – we are in awe of you, and so, so, so thankful.
My request for tours in the future: To the Macquarie University – • Record the tour sessions so they can be shared globally (with captions) – every word and every bit of added humour was precious. To Anne – • That the gathering is a day and night event, so after the tour, we can have a Meniere’s get together (and perhaps raise some money for research), and where we can share our stories, our tragedies and triumphs, and lift each other up.
As I catch my flight back to Brisbane, finally I slow down. My heart is breaking, and yet, it is full of joy. How can it be in two states at once? It’s breaking because people are still suffering terribly with Meniere’s disease. And yet it is full of joy. The future for us is looking bright. I know our cure, or resolutions of our symptoms, is coming soon.
I tuck into my ‘traditional flight home Krispy Kremes – original glazing’ and reflect on my insanely amazing day, and I hope that, while Dr David McAlpine and Dr Mohsen Asadnia are at the 2nd Inner Ear Disorders Therapeutics Summit in Boston in two weeks to share their research and findings, and to listen to other researchers on their discoveries, all the pieces of the Meniere’s jigsaw puzzle will be found.
The spark of hope can never be extinguished.
If you would like to suggest something for discussion and planning for the Meniere’s research team, please add it in the comment section, and I will pass it on to the researchers for you.
* Some names of Meniere’s people have been changed for the purpose of this blog
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.
I love Christmas. I love the childlike, contagious joy. I love the happy, and sometimes emotive music. I love the delicious baking aromas dancing through the house. I love the colourful decorations, the shiny baubles a grand temptation for our family cat and mini dachshund.
But, I don’t like the work gatherings. Three in five days this year.
I dislike not being able to strategically choose where to sit where I know I will have a better chance to hear to participate in conversations. I struggle with the unknown event planner sitting me at a table where conversations are bouncing around me, left and right, behind, in front, and back and forth, sometimes words heard, sometimes not.
I loathe the loud noise surrounding me, as I try to tune into the drowned-out conversations, the excess noise competing with the limited hearing in my good ear and it’s hyperacusis, and my cochlear implant in my Meniere’s ear.
I grapple with the embarrassment of asking someone to repeat themselves. Once. Twice. Sometimes three times.
And I deplore feeling like a fake, pretending to be a normal person who is perfectly happy, like everyone else seems to be as they enjoy every moment, while I sit there as a wobbling pool of anxiety that makes me want to flee from the room.
I hate being an observer, looking for who is talking … the unremitting, tiresome watching … watching how other people are reacting to what is being said that I cannot hear properly. Should I fake smile now? Should I pretend to laugh now? Should I look crestfallen now? Should I shake my head from side to side like others now? Should I nod, now?
I despise being the copycat, and the battle of trying to fit in.
I hate … how utterly exhausting it is.
And I resent how it makes me feel. Like I’m not good enough. Like I’m an add on. Like the others are just being polite to me.
I hate what Meniere’s has done to me. I feel like I am living in a world where I don’t belong. A misfit.
I feel like I am a spectator to a life that is full of colour, while my shadow, Meniere’s, drains the colour from my life.
And then I feel disappointed in myself.
I should be thankful that my vertigo was destroyed by gentamicin, also destroying my balance and having to relearn to walk using my eyesight. I should be thankful that I have a cochlear implant. I should be leaping with joy that I can still teach in classrooms of teenagers, guiding them, helping them to grow their wings so they can be whatever they want to be in life.
But, my work friends and colleagues (whom I love and adore) don’t know how exhausting it is trying to fit in with their photobooths, their conversations in a loud background environment, their misbelief that perhaps my life is as normal as theirs, when in fact my struggle is exhausting, riddled with the poison of life destroying anxiety.
They don’t know how, when I go home, I have to pick up the pieces of me that are breaking off to the reality that I feel like I don’t fit in. That I will never be normal. Like them.
They don’t see me as I melt into a pool of self-pity.
How do I ask my generous employer for an exemption from the compulsory celebratory gatherings? How do I explain I don’t want to go to the extravagant, lavish, work celebrations to stop the physical, emotional, and psychological fallout? How do I explain these social gatherings make me want to run from the room, or sink into a corner where I can be invisible? How do I explain that I don’t want to go so I don’t have to suffer my own personal after-celebration post-mortem of overthinking, and tears? How do I explain that I don’t want to go, to stop me waking at 3am, hating being me, and hating my shadow, Meniere’s.
And then I think … the person who others think I am, the version of me they see at work, is entirely my fault. I’m exceptional at covering up my disability and my invisible illness. 26 years of Meniere’s. I’ve had a lot of practice. They can’t see me working hard to keep my balance. They can’t see me working hard to have a conversation with them. They don’t see my cochlear implant, hiding beneath my hair.
And then I remember…
I am a survivor. A fighter. What I have been through with Meniere’s disease is heartbreaking. Devastating. Life changing.
I suck in a breath and hold back my tears …
But still. I so hate this. I so hate what Meniere’s has done to me, and what is has done, and is doing, to others.
I think back to the advice I generously give to others, reminding myself to use it –
Change your mindset from negative to positive.
Look for the small triumphs.
Celebrate the small wins.
I’ve done it a thousand times before. And I must continue doing it …
Well, I did do it! I survived three social celebrations in five days, as physically exhausting as it was. I’m thankful to be invited. It would be worse to be left out. I connected with another work colleague who is deaf in one ear. I asked her how she was going with all the noise, thinking how blessed I am to have a cochlear implant. I watched as normal hearing people struggled to hear conversations, me sometimes hearing the conversation better than them with my Cochlear Implant! And I had very patient friends and colleagues who did repeat words for me, and understood. And I thank and honour them for their kindness.
If you’re reading this, finding yourself nodding your head with perfect understanding, and even perhaps, tears falling, remember, if you are going to a social event, you can do it! I totally get what you are going through. Look for the helpers. Look for the good things that happen. And … forgive yourself. Forgive others, for they do not understand. Be kind to yourself – intentionally, extravagantly, unconditionally.
Good things are coming … I know it.
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.
I die a little inside each time I hear someone with Meniere’s disease pleading for help, saying they can’t do it anymore, and when I hear the callout for prayer for someone who is suicidal from the insidious incurable disease … I’ve been there. I know exactly how it feels. I wish I had a magic wand to heal every one of us. Right now.
I get angry when I read Meniere’s patients being told by their doctors, ‘I’m sorry. There is nothing more we can do.’
Don’t accept it. There is more that can be done.
But … it also depends on what you are willing to do.
Let me tell you the short story of my journey.
1995 …
‘I’m sorry. There is no cure.’
‘No cure?’
‘No … no cure; no cause. But you’re not going to die from it.’ My ear specialist eyed me with caution. The bitterness of my diagnosis after five hours of testing was painful to acknowledge.
‘Let’s wait and see how your symptoms go,’ he said.
I stepped out of the ENT’s office, trailed by a very dark shadow: Meniere’s disease. It was so large it cast a darkness over me like a heavy, storm cloud, ready to erupt into the strong spiralling wind of a hurricane or cyclone at any moment. I knew the symptoms of my diagnosis well. I lived them with every breath that I took, mixed with fear and anxiety: aural fullness, hearing loss, tinnitus, and vertigo – the abhorrent violent vertigo – a life changer.
I felt like I was given a prison sentence.
Where was the key to escape from Meniere’s disease?
Wait and see how my symptoms go? Why? It could be a mild form that had little impact on my life, or it could go into remission.
But mine didn’t.
Thank you to the creator of this list.
After return visits to my ENT I was given a diuretic and Stemetil. That was it. And that was all they had in 1996. End of story.
But was it?
As my Meniere’s disease kicked into overdrive, destroying every bit of happiness I had in my life, the worst my ENT had seen, I got up to fight. Life was brutally unfair. Why was Meniere’s disease even a thing? It’s so cruel.
I was angry. I wasn’t going to accept “there’s no more we can do”. So I took control.
1. I started journaling my lifestyle vertigo attacks – what I did, ate, or drank beforehand an episode, trying to find a trigger or a pattern – and I discovered one – every two months I would have four hours of violent vertigo for nine days in a fortnight. Sometimes ending up in hospital.
2. I started my own research online when we finally had a home computer.
3. I researched and tried natural therapies.
4. I tried acupuncture.
5. I had my jaw alignment checked for TMJ (temporomandibular joint).
6. I listened to sound therapy for months on end – the Tomatis effect.
7. I took my research to my ENT, every visit. I’m sure he let out a sigh every time he saw my name on his patient list for the day. And when I found a Japanese doctor who claimed that the anti-viral Acyclovir cured people of their Meniere’s disease, my ENT was doubtful, but told me to give it a go. It cost me around $375 for each script from my GP – and that’s another story. It didn’t work.
8. I tried Serc.
But still, the debilitating vertigo rendered me defenceless. Incapacitated. And mentally, I found myself at the bottom of the darkest abyss with no hope, wearing a mask with a smile, covering up my very, very deep and dark depression.
2004 …
9. I tried prednisone. For one day I felt like a normal person. And then my vertigo returned.
10. I had a grommet inserted into my eardrum. It did nothing.
The doctor’s words were full of apology. And frustration. ‘I’m sorry. There is nothing more we can do.’
‘Nothing more?’ My heart sunk. There was no horizon of hope, like the sun’s rays projecting onto the twilight canvas. It had disappeared into the darkness. Like me.
Just me and the beast: Meniere’s.
My ENT looked gutted. ‘Well … we could try gentamicin injected into your middle ear, and if that doesn’t work, I can do a vestibular nerve section.’
‘I’ll take the gentamicin.’
‘It will destroy your balance cells. You will also lose some hearing.’
‘Does it stop the vertigo?’
‘It can. Yes.’
‘Then I’ll take the gentamicin.’ I didn’t care about losing more hearing. I couldn’t live with the vertigo. I was done …
2020 …
I’ve been vertigo free since 2004. But the gentamicin injected into my middle ear was not the low dose gentamicin offered now, it was the full strength, and I remember my ENT saying that he added bi-carbonate of soda and sterile water to the mix to make the toxic antibiotic penetrate better. I now have my life back. And my shadow, Meniere’s, is a small thing that follows me around, a reminder that I am a survivor and a fighter.
I have to admit, I’m a little jealous of newly diagnosed Meniere’s people now. You have so much more HOPE than I did when I started my Meniere’s journey 25 years ago. There are far more medications and treatment options and success stories, and support groups and people who have started blogs and websites for MD people.
You have so much more.
And remember, you can choose. Like I did. Make sure you have a supportive ENT. I’m eternally thankful to my ENT and his care and compassion. And now my new ENT for his skill with my Cochlear Implant that has allowed me to hear again after 15 years.
Meniere’s Warriors:
This is your weapon—Research—scour the internet for everything about Meniere’s disease and treatment options. Present them to your ENT. You are your best advocate. It’s your life. You take control.
This is your plan—Trial—approaches and treatments that people are having successes with (after researching – there’s a lot of scammers/snake oil salespeople/quacks out there trying to make money out of our suffering).
This is your mantra—Never give up and reach out. We’ve got this, together.
Doctors, this is our plea: please let us choose our steps to wellness, to a better life where we can find joy again, where we can take back what Meniere’s disease has taken from us. Please don’t say “there is nothing more you can do”. We have suffered more than enough.
I’m looking forward to the day when I hear: ‘Here’s the bad news. You have Meniere’s disease. Here’s the good news—we can fix it!’’
To help you out in your MD journey, I have a two freebies you can download:
The spark of hope can never be extinguished. A cure for Meniere’s disease is coming …
I write this blog with the knowledge of the great diversity of experiences of people with Meniere’s disease in mind. Some suffer greatly. Some little. Some people respond to medications. Some don’t. Some can still function with little disruption to their daily lives. Some don’t.
I also write acknowledge that there are many debilitating incurable illnesses, and I am in not in any way discrediting or minimalizing another person’s illness.
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. playing.
The Colour of Broken is my best-selling novel (written under my pen name) that has a character with Meniere’s disease. It hit #1 on Amazon in it’s category a more than once. It can be bought at any online bookstore, including Amazon.
The Daily Meniere’s Journal is a 365 day print book to record your MD symptoms to find triggers and patterns. It can be bought on any online bookstore, including Amazon.
All profits from these books are donated to Meniere’s research to help find a cure.
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 Meniere’s Disease or a Cochlear Implant. Your experiences, advice and suggestions are welcome.
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.
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.
‘The Colour of Broken‘ – The #1 Amazon bestselling book with a main character with Meniere’s disease – raising awareness and understanding.
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.
Fatigue
/fəˈtiːɡ/ noun
noun: fatigue; plural noun: fatigues
1.
extreme tiredness resulting from mental or physical exertion or illness.
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.
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.
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.’
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.’
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”
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 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.
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.
My Shadow - Meniere's 