Turn Off the Vertigo!

June 18, 2022.Reading time 34 minutes.

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 headquarters

10:30 – 11:00

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.

Dr Chris Pastras presented next.

Discovery:
FIND THE CAUSE OF VERTIGO ATTACKS IN MENIERE’S

aetiology <-> hydrops? <-> symptoms

Discovery:
FINDING THE CAUSE OF VERTIGO ATTACKS IN MENIERE’S

• Clinical Indicators
• Origin of Dysfunction
• Pathophysiology

Discovery:
A HOLISTIC PATHWAY FROM DISCOVERY TO TRANSLATION:

Uncover the link between endolymphatic hydrops and MD.
Characterise the cause of vertigo attacks for future treatments.
Develop novel therapeutic strategies in animal models.
Develop novel diagnostic tools for clinics.
Improve current diagnostic and treatment strategies.
A vestibular implant for balance rehabilitation after surgery

Professor Mohsen Asadnia followed Dr Chris Pastras.

Innovation:
ENGINEERING NOVEL MICRO/NANO DEVICES:

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.

You can watch a news item about the research here: https://fb.watch/dJ5Ov5gypS/

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.

The donation form: https://secureau.imodules.com/s/1404/lg21/form.aspx?sid=1404&gid=1&pgid=1762&cid=3651

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.

It’s My Life, My Illness … Please Let Me Choose My Treatment

September 22, 2020.Reading time 12 minutes.

‘I’m sorry. There is no cure.’

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.

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:

* Meniere’s Checklist of Treatment FREE Download

* 365 Day Meniere’s Journal to track patterns and triggers FREE 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.

https://www.julieannwallaceauthor.com/

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.

It Will Change Your Life #11

December 31, 2019.Reading time 25 minutes.

December 19^th. Surgery day …

The birdsong of the new day wakes me. If I had been sleeping on my good ear, I would never had heard it.

I’m thankful for that precious moment. It’s been my survival mantra since battling the ferocious Meniere’s disease. Look for the small things that make me happy, no matter how small or insignificant to others. It’s been 24 years of Meniere’s disease now. And it’s been a helluva journey that had me on my knees pleading for mercy many times as I battled the violent, abhorrent vertigo that left me a shadow of myself, lost in the darkness of depression, trying to find me, my old happy, carefree, confident, successful self. Menierians know exactly what I am talking about.

I blink away my past. Today’s the day. The surgical step in regaining my hearing, I think to myself. There’s no turning back. Yesterday was proof, more than enough, that I need the Cochlear Implant.

I climb out of bed and walk to the window and look out. There is still smoke haze hanging about from the 100s of fires that have been burning, many of them lit by people who think lighting fires is a fun thing to do. How dare they? I shake my head. We desperately need rain.

I change my focus. I need to finish breakfast by 7:30am and then fast for surgery. Mentally, I tick off what I have already done for today:

* Organised my daughter to spend the day with her father (my husband), to make sure he is okay while I am having surgery. He gets a terrible look of worry on his face, filled with sorrow, when we talk about the possibility of me having vertigo again. It breaks my heart. It’s a stark reminder that Meniere’s has a powerful impact on those who are spectators to what we go through with this horrid disease.

* Organised for my mum to catch a lift with us to the hospital.

* Organised for my two sons to pick up my dad to come and visit me after the surgery.

* Laughed at the absurdity of all the organisation I must do to ensure that the wheels turn smoothly.

Time for me.

* Breakfast before 7:30, then fasting. Toast and tea and chocolate 😊

* Pack the overnight-stay bag for hospital.

* Race to Target to buy some slippers for hospital. I have never owned any. I choose the bunny slippers because I have always wanted to have a rabbit as a pet. In Queensland, Australia, where I live, it’s a $63,000 fine if you are caught with a rabbit. This is the closest I can get.

* Double check paperwork.

I still for a moment. Vertigo. I have a terrifying fear that it would be awakened by the procedure. My shadow, Meniere’s, is dancing around me smiling. I raise an eyebrow at it and it stops.

The clock ticks over to 10am. It’s time to go. It’s time to start a new chapter in my Meniere’s journey.

I hug each of my sons and tell them that I love them. My eldest son tells me he loves me, and I hear it easily. My youngest son says something after I tell him I love him. In true Meniere’s deaf ear fashion, and one sided hearing, I can’t hear what he said and say my usual, ‘I didn’t hear you, can you say it again?’ and he says with more volume and clarity, ‘I love you, too.’ My heart melts.

I do a final swoop of the house. It is clean and tidy. Then walk to the front door.

My husband has my hospital backpack slung over his shoulder, and my daughter, her heart more beautiful than sunshine, stands beside him. They watch me, worry etched on their faces. I suck in a deep breath, controlling the deep emotion that tries to surface, not for me, but them. I don’t want them to worry.

‘I have an amazing feeling of peace. No anxiety at all,’ I tell them. And it’s the truth.

The front door closes with a feint click. It’s symbolic in a way. One door closes, another opens…

I walk to the car thinking, Anxiety, where are you? My shadow, Meniere’s, and me, are going in for surgery. Where have you gone? I can’t get over the feeling of peace that envelopes me. I decide to accept it and receive this gift from my faith, with a full and thankful heart.

Our car pulls into my parent’s house. Mum and Dad greet me with a smile. The universal language that puts you at ease.

‘Feeling nervous?’ my dad asks, making his hand shake for effect.

‘No. Not at all,’ I answer. Dad raises his eyebrows at me in disbelief.

‘I’m nervous for you,’ my mum chips in.

‘Good on you, Mum,’ I say, offering her a smile.

I hug Dad. Mum sits in the car, then me, and we are off. I’d love to listen to some music with my good ear in the car, but Mum chatters on. I’m guessing it’s her nervousness.

We arrive at the hospital and check in, then proceed to the surgery waiting lounge. Me and my family take a seat together, while my shadow, Meniere’s, bounces on the empty seats. I shake my head at it. I look for my friend, Anxiety, but he’s still not here.

It’s 11:30am. There’s quite a few adults and three children awaiting surgery, and a few of their partners and family members. I watch a man entertain his daughter with a Christmas Elf plush toy. I decide that he is more amused by what he is doing than his child. My shadow, Meniere’s, is sitting on the floor in front of him, watching.

At 12 pm, I’m called to a room by a nurse. She does the pre-op check – temperature, blood pressure, a million questions relating to my health. She tells me that my surgery is scheduled for 2pm, and I return to the waiting room.

At 1:15pm, my anaesthetist appears. I know what he looks like because I Googled his name a couple of weeks ago. My husband and I follow him to a room where we sit and wait for him to speak.

He greets me, talking loudly, over-pronouncing every word like I am totally deaf in both ears. I think of that annoyance profoundly deaf people have where normal hearing people think the person will hear better if they talk loudly.

I tell him I have one good ear and can hear him well. He smiles, and immediately his volume of voice returns to normal.

He asks me medical questions revolving around how I have reacted to anaesthetic with previous operations and takes notes, then I tell him that I have no anxiety about the surgery, and watch for his reaction, both facially and non-verbally with body movement. It still worries me that I’m so peaceful. I am an overthinker after all. I ask him if it is that a thing, like a phenomenon? Or, is there a psychological explanation for it?

He shakes his head and replies, ‘It’s good not to have anxiety.’

His last words before we exit the room are, ‘Don’t worry. I’ll look after you, I promise.’

We return to the waiting room. I keep looking at my watch, wondering when I will be called in for surgery preparation. It’s getting closer to the 2pm surgery time.

At 1:45pm, I am greeted by another nurse. It’s time to go. I hand out hugs and kisses to my husband, daughter and mother, then disappear, following the nurse to yet another room, where she asks me what my name is and my date of birth. She gives me a medical bracelet and cross checks the ID number on it with my paperwork. She shows me the change room, where I am to change into the hospital gown, including covered bare feet and a hospital robe. Once I am dressed, she places tight stockings on my lower legs to prevent blood clots during and after surgery. Then I’m led to a very comfortable recliner chair in another waiting room with a television, where she places a warm blanket over me.

And I wait. But it’s a good time for reflection. I think back to the posts from the Cochlear Implant Experiences Facebook group I joined four weeks prior. The discussions and support of other members on there and what I have learned from them has been invaluable.

It is 2:10pm, and I watch other patients come and go. I watch the television, which has closed captioning, then decide to close my eyes for a bit. I hear my name, and I follow another nurse to have a heart trace done (ECG) before returning to the waiting room. Finally, a theatre nurse calls my name, and I follow her to a hospital gurney that will take me to surgery. I don my surgery cap, hair tucked in. I listen to the nurses chatter about holidays they are taking, then my gurney is wheeled to a holding bay. The theatre nurse tells me they need to change around the operating theatre because they will be working on my left ear. She disappears.

My surgeon enters my holding bay with a smile. He approaches me on my left side, then quickly moves to my right side. ‘You will hear me better on this side,’ he says. I love him already.

‘I need to draw on you to make sure I implant the correct ear. Tell me what surgery you are having done?’ he says. It’s a question I have answered many times already, as well as my full name and date of birth. Surgery protocol.

‘I’m having a cochlear implant in my left ear,’ I answer.

He nods and smiles, then leans over and draws on the left side of my neck, just below my left ear. ‘See you soon,’ he says, and bounces out of the room with too much energy.

Five minutes later, my theatre nurse is back, and we are travelling the halls of the operating theatres. We enter the surgery room, and I gaze around, taking it all in. I see my surgeon studying my MRI, arms folded. He turns and smiles at me. The nurse lines up the gurney to the operating table, and I shuffle over to it, then lie down, ensuring that I am in the middle of the narrow table.

I am surrounded by the anaesthetist, a theatre nurse and my surgeon.

The nurse asks, ‘What is the name of your surgeon, and what is your full name and date of birth?’

As I say my surgeon’s name I look at him. He nods his head and his brown eyes show that he is smiling. I answer the rest of the question and the nurse checks my bracelet ID number to my name.

‘What procedure are you having done today?’ she asks.

‘I am having a cochlear implant in my left ear,’ I say. They all nod.

And then the movement begins. The anaesthetist straightens my right arm on positions it on a support board that juts out from the operating table, then places a tourniquet around my upper arm. He taps my lower arm a couple of times and inserts a cannular. Within 30 seconds I feel myself getting sleepy. The last words I hear are, ‘Take a deep breath,’ as the anaesthetist places the mask over my face…

I wake in recovery to the sound of my name being called. I open my eyes and become troubled by what I see. My biggest fear was waking to vertigo, and then having vertigo for days or weeks after surgery.

‘I have double vision,’ I say to the nurse, then close my eyes. This isn’t right, I think. Nowhere in my copious amounts of study and research was double vision mentioned.

I open my eyes again, and the double vision corrects itself. I feel my body relax after a small moment of panic.

The nurse checks my temperature, blood pressure, oxygen level and heart rate. I keep my eyes open, focussing on any sign of vertigo. None. I then become aware of a tight bandage around my head, over my ear. I have no pain, which, I assume is due to any pain medication given while I was unconscious.

In the next moment, my hospital gurney is moving. I’m being taken to my room for the overnight stay.

As soon as the hospital bed is in position in the room, I look up to see my husband entering, worry painting his face like a fractured mirror. I smile at him, and instantly his worry vanishes, like it has evaporated into thin air.

The nurse fusses about, conducting her observations, recording everything she needs to, and asks if I have any pain, which I don’t. My heart rate is sitting at around 58 beats per minute, but that is normal for me.

Then my mum and daughter arrive. My mum smiles slowly, while Claire eyes me warily. She has seen me with too many tears in her lifetime. I smile at them to put them at ease, but I know they are worried, as their furrowed eyebrows plead for answers to unasked questions.

‘I did it,’ I say. ‘No pain at all. I woke up with double vision. But that’s all good now.’ I touch the bandage around my head.

‘Nice head band,’ my daughter says with a smirk. I grin back at her. She has a way with humour that we both understand. My husband and three children have learned to deal with my Meniere’s monster with humour to make me laugh. It’s the only way for us all to cope as they watch me fall apart in front of their eyes. They are brave. And observant. And beautiful. This humour from my incurable disease is a bond that holds us together as they gather around me to hold me up from falling in a heap.

I look up as my two sons and my father enter the room. Well done, boys, I think, Grampy would have loved spending time with you in the car.

Amongst the chatter and explanations and assuring them that I am fine, I discover a tray full of food – chicken soup, a meat dish, vegetables and mashed potato, cake, tea, milk and two bottles of water. Yay! I’m starving! I eat happily, my family tasting this and that as well. The nurse walks in for observations and tells me the surgeon was very happy with the operation. He x-rayed the position of the placement of electrodes while I will still under the general anaesthetic, and that he will be in tomorrow morning to remove the bandages.

After my family leave, I settle in for some much-needed sleep amongst the hospital alarms and beeps.

Still no pain at the surgery site.

Friday 7am…

My surgeon enters the room with a calming presence.

‘How are you?’ he asks. His gaze is focussed on my face, waiting for my answer.

‘Great,’ I say. ‘No pain. Did you give me any pain medication during surgery or after?’

He shakes his head.

‘I’ve had no vertigo. Just double vision when I woke in recovery. Are you happy with the surgery?’

‘Very,’ he says. ‘I managed to get the electrodes all the way into your cochlear.’

My eyes widen. I remember the Cochlear Audiologist telling me that sometimes the surgeon can only get the electrodes partially into the cochlear. ‘Wow,’ I say. I can’t believe it.

He walks to the basin and washes his hands, and takes some scissors from a tray, then walks around to the right side of my bed. ‘Let’s take the bandage off and see how it looks. I’ll have to ruin your great hair style,’ he jokes. He uses the surgical scissors and cuts through the bandage and studies the incision site. ‘Looks good. Sleep sitting up for a few days and don’t wash your hair. No heavy lifting or sneezing. I’ll see you on Monday at 10:45am. Any questions?’

‘Aaah – no. Just … thank you for looking after me.’

He gives me a nod and a smile. ‘Take is easy, and I’ll see you Monday.’

10am

My husband arrives. He hands me a copy of my own novel that has a main character with Meniere’s disease. It’s a gift to the nursing staff. And a gift for those with Meniere’s disease. It will help the nursing staff understand what Meniere’s is really like – physically, socially, emotionally, psychologically. We need to find a cure! I sign it for them.

After final observations and cannula removal, I am discharged from the hospital. I am in disbelief at how good I feel. And I am soooo thankful, with a heart overflowing with gratitude – my faith, my medical specialists, the nurses, my family – it takes a village.

Life is good. The light shines more brightly when you have struggled through the darkest of dark storms.

There is always hope.

Next blog. Happy New Ear! Cochlear Implant activation …

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 also acknowledge those before me, who have already had a Cochlear Implant. Your experiences, advice and suggestions are welcome.

It Will Change Your Life #4

November 14, 2019.Reading time 12 minutes.

October 31, 2019

I’m filled with so much doubt. I am choosing to get a Cochlear Implant. Am I allowed to choose? Or should I just accept my fate that I will remain without hearing for the length of my days, auditory colour disappearing from my life.

I didn’t choose to have Meniere’s disease. I didn’t choose vertigo. I didn’t choose deafness. I didn’t choose tinnitus. Just like other people who didn’t choose their incurable diseases or illnesses.

A Cochlear Implant feels like a second chance. A second chance at hearing. Of taking back something Meniere’s disease has taken from me. In my mind’s eye, I am facing the beast of Meniere’s, my sword drawn.

I want to be violent with Meniere’s. So violent. I hate it. I hate what it has done to me. What it has taken from me. I hate what it does to its victims. I want to slay it with an intensity that will obliterate it for eternity, with such force that it withdraws from bodily habitation of every person who suffers from it.

Cure come soon. Please.

I arrive in the city. I look up briefly from the footpath that I walk on. A rarity. My normal walk is focussed on the ground in front of me, ensuring each step will keep my balance. I see an old windmill on top of the terrace. Unkept grey, striking against the beautiful lilacs of the Jacaranda tree. It was built by the convicts in the late 1820s and is the oldest windmill in existence in Australia. Due to its windless location, the windmill morphed into a symbol of “dread and torture” as penal Commandant Patrick Logan used convicts to work a treadmill he had constructed to keep the arms turning in lieu of wind.

Dread and torture. Fitting. A perfect symbol for Meniere’s disease.

A weathervane decorates the uppermost part of the windmill. And there sits a crow, blacker than night. It squawks. Welcome, I hear. Today, you will learn of your fate.

I inhale deeply. My eyesight returns to the uneven, battered, cracked path in front of me. Falling is never a good thing. Once you have your balance cells destroyed, when you fall, you have no idea where to place your hands to protect yourself.

The first time I fell was Christmas 2018. We were on holiday in Tasmania, walking the Dove Lake trek at Cradle Mountain. 5.7 km. 3 hours.

After the walk we entered the cafeteria for a drink. Without warning, tears filled my eyes. In public.

My husband turned to me and the look on his face said it all. His eyes widened. ‘What’s wrong?’

‘I fell,’ I said. I wanted to sob. Loudly. Aftershock from the fall. I caught the sob in my throat. ‘I fell and I couldn’t stop it.’

His eyes filled with tears, but they didn’t leak down his cheek like mine. I always hate seeing his eyes that way. He was following me as we walked, to catch me if I fell. He always does that for me. My protector. And when it happened, there was no way he could stop it. I remember the panic in his voice as he leaned over me, asking if I was okay, looking over me, again and again. ‘Did you hurt yourself?’ he had asked.

All I could say was, ‘My phone is under the bush, over there.’ I had no idea how I saw it slide under the bush. When I fall I have no idea where to put my hands to stop me, or protect me – inside my head I see a body but no arms or legs. That’s what destroying your balance cells does. I just have to wait for impact and suffer the consequences.

‘I don’t care about your phone. Are you okay?’ he said.

‘Yes,’ I said. It was a lie. I was hurt. But I wanted to get up to save face. There were many people on the walking track. I HATE YOU MENIERE’S!

My husband pulled me up off the ground. My daughter picked up my phone. She was too quiet. How many times had she witnessed Meniere’s bring me to my knees with vertigo, deafness, depression? And now falling.

I blew out a long breath between my lips. Then set a rock in my sights to sit on for a moment to assess my injuries, then walked there, my husband holding onto my arm to support me. I wanted to yell at him, “LET GO OF ME. I’M NOT AN INVALID!” But I didn’t. He was trying to help.

I sat on the rock, looked over the lake and focussed on where I hurt – my wrist, my arm, my ankle and my back. Hold yourself together, I thought, people fall all the time. Put on your “I’m okay mask”.

‘Are you alright, Ma?’ my daughter asked.

Hold yourself together. The emotion of ‘I want to fall to pieces’ rolled through me. Hold it together. Breathe. ‘It could be worse,’ I said, ‘I could have broken something.’ I was hoping that I didn’t break anything. My wrist, arm and ankle were throbbing. Not to mention my back spasms. ‘Thanks for picking up my phone,’ I added.

She nodded, looking at me with concern in my eyes.

‘I’m sorry for falling,’ I say to her. I don’t want her to be embarrassed by me. I HATE YOU MENIERE’S.

And of course, she is not. She never is. She’s always one of the first to help. It is my own self-judgement that betrays me.

I stand. In pain. But I can walk to finish the last hour of the track.

My daughter is in front of me, glancing back at me once and a while, and my husband behind me. I’m glad. He can’t see me wriggling my fingers to check my wrist, and feeling where my right arm hurts, nor the wince on my face when my ankle hurts more than I want it to, or my back spasms. All I can think of is when my son would roll his ankle at elite triathlon training, and his coach would tell him to walk normally on it. So that is what I do, despite the pain.

Back at the cafeteria …

‘I could have died if I fell in a different part of the walk.’ It was true. Parts of the track were on a boardwalk above the ground that fell steeply, scattered with rocks and trees. No rails to stop a tumble.

‘I know,’ he whispered. I watch his watery eyes and see him swallow harder than usual. ‘What do you want to drink? Do you want an ice-cream?’ He was using the distraction method. He knows me well.

Claire and I find a table away from most of the people. My wrist and arm throb. My back was spasming and my ankle twinging. Swelling was setting in. I ate my ice-cream, flicking tears from my eyes when they dropped. At least I don’t have vertigo, I thought. It was a good day, after all. Any day without vertigo is a good day. Suck it up, I tell myself, it could be worse.

We enter the ENT’s reception area. I laugh then shake my head in disbelief at the choice of carpet. The pattern on it makes me nauseous – thanks to my shadow, Meniere’s.

My ENT calls me in. ‘Good news,’ he says. ‘You are a candidate for a Cochlear Implant. I have signed you off on it if you wish to proceed.’

I swallow. There it is again. I get to choose.

I nod. But not with confidence. More like a ‘roll with the wave’ type of nod. I’m following a path but not certain of that is where I am meant to be. How will it change my life?

He refers me to a surgeon, and then as I leave, I thank him for his support throughout my Meniere’s journey.

‘You don’t know how difficult it has been for me, when there was nothing I could do to help you,’ he says.

‘But I am one of your success stories,’ I remind him. I wouldn’t be standing here today if it wasn’t for his help.

He shakes my hand. ‘Keep in touch. I want to know how you go.’ He gives me a smile.

I walk out of his office and numbness sets in. I’m a cochlear implant candidate. This just became real.

Next step. The Cochlear Implant Surgeon appointment.

It Will Change Your Life #3

November 12, 2019.Reading time 14 minutes.

Monday morning 28.10.19

Mum and Dad sit on the garden seat waiting for me.

I’m having my Cochlear Implant assessment today. This time I have to drive to the city. Except I can’t drive there by myself with 100% confidence. There’s too much visual movement. I don’t know which direction sound is coming from. Moving my head from side to side makes me nauseous … it’s a vestibular and visual nightmare.

I’m tired when we arrive. Being on high alert and concentrating intensely for an hour is exhausting. But I feel relieved, and sink down into the seat in the reception area at the audiologist.

Soon after, Jane greets me with a smile. The universal language that puts you at ease. Anxiety, tinnitus, deafness, my shadow – Meniere’s, and I follow her to her office. I place my novel, ‘The Colour of Broken’, onto the desk beside me.

Jane tells me she is the Hearing Implant Manager, and a Senior Lecturer at the School of Health and Rehabilitation Science at the University of Queensland. I am in good hands. She is also the one who decides my fate, whether I am a candidate for a Cochlear Implant or not.

She reviews my file, my recent hearing test, and questions me about my history with Meniere’s disease, taking notes as I talk. Then she opens a power-point on the computer. It explains, page by page, the options for hearing devices for one sided hearing loss, like mine: cros hearing aids, and the bone conduction implants – BAHA and Bonebridge, commenting that they aren’t suitable due to the hearing loss in my ‘good’ ear.

She focuses on the Cochlear Implant slides: the what, why, how.

Afterward, words on the screen bounce out at me like they’re in 3D:

‘A cochlear implant can be the extraordinary alternative that CHANGES YOUR LIFE!’

There’s those words again. It will change your life. I keep reading it. I keep hearing those words from others.

Jane hands me the cochlear implant to hold. This is really happening. I heft it. I am surprised by the light weight. She places the outer cochlear components on my head and holds it there so I can feel what it is like. Small steps, I think. This is a method of easing you into the implant, to help with acceptance. Psychology at work.

‘What do you think? Do you still want a cochlear implant?’ she asks.

‘Yes,’ anxiety and I answer. My shadow, Meniere’s, glares at me.

‘What would a cochlear do for you?’ she asks.

I frown. What a weird question. It will help me to hear from my left ear again, obviously, I think. Is this a trick question? After all, she is the person who will decide whether I am a candidate for a cochlear implant or not. My shadow, Meniere’s, laughs at me.

I take a deep breath. ‘It would give other Meniere’s people hope of hearing again. It’s such a horrid, depressing disease. They need to know that a cochlear can help us hear again when they think there is nothing that can be done for hearing … and … I have counselled some people out of suicide. This will give them hope.’

‘That’s a very heavy burden to carry,’ she says.

I frown at her. Burden? I have never considered it a burden.

Jane tilts her head to the side a little. ‘What … would a cochlear implant do for … Julieann?’

And there it is. The question I was avoiding. The question about me.

My eyes sting and tears threaten. Stop.

The question is digging deeper than I want it to. I thought I had boxed away all my emotion to do with MD. This is meant to be my brave, courageous face. My Sunday smile. The one I wear all the time, so people don’t know when I am suffering. I’m a pro at it. My shadow, Meniere’s, chuckles. It’s always there, lurking.

I look out the window at the skyscrapers. How do I answer? What would a cochlear implant do for Julieann – for me? The obvious answer is that I want to be able to hear in my left ear again. Am I being selfish? What does Jane want to hear? What are the magic words she wants me to say?

‘For me?’ I shake my head, not wanting to continue to answer. This question is hurting. ‘I’m always putting myself last …’ I shake my head again. Do I even deserve to hear again with my Meniere’s ear? I think. A psychologist would have a field day with that comment!

Tears. Stop. STOP!

I cover my eyes with my fingers to prevent the waterfall of tears running down my face. I can’t ugly cry. My mum will notice when I finish the session. I don’t want her to know I have been crying…

I take a deep breath and sigh, trying to imagine life of hearing with a cochlear implant … it’s so hard to remember what having two hearing ears was like. I get a brief glimpse of me before Meniere’s disease. Before the shadow of darkness took full, vibrant colour away from my life. I can be re-coloured, right?

I swallow the lump of emotion rising from my chest. I can’t look back at my life. It’s too painful. I need to keep looking forward.

Courage. Breathe.

I look at Jane. Tears trickle.

‘A cochlear would give me a sense of direction of sound, especially with teaching in the classroom and yard duty. It would be a safety issue at school and my non-school life – my husband has saved me three times from being run over by a car … I would be able to go to social gatherings again. I don’t do social events anymore because I can’t hear what is being said, and people get tired of me asking them to repeat what they have said. I smile and nod when I shouldn’t be, and people frown at me. They choose to talk to someone else because I can’t hear them properly. The rejection hurts … really hurts. I now choose not to go out with friends and colleagues because I can’t hear properly.’ The words gush out of me.

‘Good,’ she says. ‘Do you still want a cochlear implant?’

‘Yes,’ I whisper.

‘Let’s do some hearing tests,’ she says.

I’m baffled. I did a thorough hearing test less than a week ago.

Wearing my Phonak cros hearing aids, I sit between two speakers, one near my left ear, the other one on my right. Jane tells me to keep looking forward and not to move me head. Sentences flow out of the speakers that I have to repeat. First with no background noise, and then will background noise on my left and then on my right.

Even with my cros aids on, I don’t have any speech discrimination when background noise is played on my good ear side. I do however get one sentence right – ‘Are you baking chocolate cake for the visitors tonight?’ I feel pleased with myself. My chocoholicism is shining through.

‘You’re very good a keeping your head still,’ she says.

‘I’ve had lots of practice.’ The memory of spinning violently with vertigo comes crashing forward. How many days have a I walked around and not moved my head to stop the nausea, or try to put off a vertigo attack? How many hundreds/thousands of hours have I keep my head perfectly still while spinning?

‘You’re very good at focussing on the words with the background noise playing,’ she says.

‘I’ve had lots of practice,’ I answer, thinking – this is every moment of my awake life.

‘If you are given a cochlear, you have to work at learning to listen with it. It’s not a magical device that’s turned on and suddenly you can hear normally. You must have people around you who will support you.’ She looks at the empty chair in the room. I take the cue and babble on about my husband having to go back to work today after facial surgery, and that my mum and dad are waiting outside for me.

‘Thanks, Julieann. I’ll write up a report about my recommendation for you and send it to your ENT. He will tell you if you are a candidate for the cochlear implant.’

Relief washes over me. I am done. No more tests or questions that are too uncomfortable for me to answer.

I gesture toward my novel. ‘I’d like to give this book to everyone here. It has a main character with Meniere’s disease. I wrote it to raise awareness and to help raise money to find a cure. I’ve donated around $3,200 to Meniere’s Research Fund Incorporated so far. Amelia Grace is my pen name.’

Jane smiles and I sign it –

“The spark of hope can never be extinguished.”

‘I’ll leave it in a place for all patients to be able to read, but I’m going to be the first person to read it!’ She looks at me, her eyes twinkling.

I walk out of the consultation – me and my shadow, Meniere’s. Anxiety is dawdling behind. Jane hands me a yellow folder.

The moment my mum and dad see me, they smile. The universal language that puts you at ease.

Next. Back to my ENT to learn my fate.

About this blog …

I also acknowledge those before me, who have already had a Cochlear Implant. Your experiences, advice and suggestions are welcome.

It Will Change Your Life #2

November 7, 2019.Reading time 12 minutes.

Monday 21.10.19 continued …

My own silence is smothering me. The journey to the Cochlear audiologist in the city is forty minutes long. Forty minutes of staring out the window. Looking but not seeing. Forty minutes of mixed feelings and questions ruminating inside me, alongside anxiety, and the five impossibly loud noises of tinnitus that never leave me. I can never have inner silence. Ever.

I turn my head towards my husband. My ENT shakes his hand each time we visit him, and he fills him with kind words about sticking by me through my Meniere’s journey. ‘Most men would have left their wives by now,’ he says.

I focus on his facial scars from a recent surgery to remove two skin cancers from the bridge of his nose (a Basal cell carcinoma and Squamous cell carcinoma). Sixty-eight stitches. ‘There goes my modelling career,’ he joked with the plastic surgeon. We all laughed. Our fabulous Australian sun loves us too much. At least the cancers are removed now. He’ll get on with this life after this slight hiccup like nothing even happened. It’s not as if he has a debilitating condition that stops him from enjoying life, I think. My stomach drops. I berate myself for not being sympathetic to what he has been through, and guilt hits me like a freight train.

Disappointed with myself, I look back to the road before us, the movement of cars making me nauseous. I hate Meniere’s disease. When will it end? Meniere’s for life. Like a prison sentence. Wherever I go, Meniere’s goes. My shadow, always present. Lurking.

The first thing I see at the hearing centre is a ginormous ear. Yep. I’m at the right place!

An audiologist enters the reception area and calls me to follow him. We go into a soundproof room and he introduces himself and then asks me, ‘Your Meniere’s started in which year?’

‘My left ear,’ I answer.

‘Uh – huh. Which … year … did it start?’ He repeats.

I burst out laughing at my mishearing. Welcome to my life. He doesn’t laugh like me. I’m guessing he has heard it all before. I am having my hearing tested for hear loss after all. Mis-hearing is nothing new to him. ‘It started in 1995,’ I answer in a serious voice.

He asks more general questions, and at the end of his questioning, I say – just for general information, ‘I know that research shows no cause and no cure for Meniere’s, but I believe my Meniere’s is caused by being hit on the side of my head, close to my left ear, by a softball when I was sixteen.’

The audiologist leans back in his chair and folds his arms.

Uh-oh…

He takes a deep breath. ‘Meniere’s disease is an inflammation of the endolymphatic sac and—’

‘I know, in detail, what happens in the inner ear with Meniere’s. I have been researching about it for 24 long years and was invited to the Meniere’s Symposium in Sydney last year (https://healthyhearing.com.au/menieres-disease-research-symposium/) and have heard about and seen images of the physiology of what happens during a vertigo attack.’ I had cut him off. I feel bad. He assumed I had no idea I knew anything about my disease, as one would. He should have asked first. All of us Menierians search for the exact moment that might have changed our lives, and research the disease itself. We talk to each other. We know A LOT of stuff about our disease.

He gives me a nod and says no more on the subject.

I add, ‘I had a hearing test a couple of years ago and it showed that I have cookie bite hearing loss (https://www.hearingdirect.com/au/blog/what-is-cookie-bite-hearing-loss.html ). It’s genetic on my father’s side. That’s why I would like to get a cochlear implant, so at least I have some hearing in the future.’

He gives me a nod again. ‘Okay. Let’s start the hearing test.’

He sets me up with the earphones, beeper, gives me the usual hearing test instructions then sits at his desk of hearing test gear. He gives a negative sigh and I wonder if he likes his job. We begin on my ‘good’ ear first, and I push the button each time I hear a beep, trying to ignore the terribly loud tinnitus in my left ear. Some tones I guess because I don’t know if it is the tinnitus sound or the beep, so I just push the button anyway.

My Meniere’s ear is next. I cannot hear the beginning of the beep at any time, but towards the finish of the testing, at times I hear the end of the beep, I think, so I press the button. I get excited when I can hear some high tones. I can hear! My heart smiles.

The testing continues. By the end, I have sat through these hearing tests:

1. pure tone audiometry, which tests how loud different sounds need to be for you to hear them

2. air conduction, which measures whether you can hear different tones played through headphones

3. bone conduction, which measures how well your cochlea picks up vibrations

4. tympanometry, which isn’t a hearing test, but a check of your eardrum

When the audiologist is finished, I sit in silence and wait on his results, still buzzing from the fact that I could hear some high tones in my Meniere’s ear. It’s a good day 😊

He looks up from the audiometric graph and pulls a face. I interpret it as a good result. I can hear in my Meniere’s ear, when I thought I was profoundly deaf. That’s what he is about to tell me…

‘You don’t have cookie bite hearing loss,’ he says. ‘Your right ear is fine, except you can’t hear the high sounds above our normal hearing range, which people with normal hearing can on our tests. Your Meniere’s ear is what we call, “dead”.’

I am surprised and happy. I don’t have cookie bite hearing loss? How did the testing show cookie bite hearing loss two years ago, but not now? I’ll take it as a win for my good ear.

Then my heart sinks. Weirdly I feel sorry for my left ear. The audiologist called it ‘dead’.

I touch my ear without thinking. Like consoling it. It’s like he has hurt its feelings. I blink.

The audiologist continues, ‘We do cochlear implants for one-sided hearing loss like yours. You have zero speech discrimination, so a cochlear implant will help you. Are you seeing Jane, the cochlear implant assessor, after this test?’

‘No. That’s Monday.’ I nod. Anxiety raises its head.

He gives me a smile. ‘Right. Let’s optimize your cros hearing aids.’

I follow him to another room overlooking the city. He cleans my Phonak Cros hearing aids that I love. I wear two – the left one sends the sound to the right hearing aid, so I can hear sound on my left side. The audiologist tells me the best place for prices to get replacement filters and batteries. Then he places them into my ears, puts an analysing device on my shoulders, and connects it all to the computer. He adds my latest hearing results to the program, and just like that, the computer system optimizes my Cros hearing technology. Brilliant.

I walk out of the audiologist’s rooms happier than I entered. I don’t have the genetic cookie bite hearing loss that affects only the girls on my dad’s side of the family, like my aunty and her three daughters. I’d add a happy skip, but I’d lose my balance and fall over. My shadow, Meniere’s, chuckles at me.

The next appointment – assessment for a cochlear…

About this blog …

It’s not just about the physical aspect of a Cochlear Implant – you can research them online. I am sharing the other side of the journey towards a Cochlear Implant – my feelings, my appointments, the process, apprehensions, successes and failures 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 of 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.

My Shadow – Meniere's

Category: ENT