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.

My Hearing Addiction

February 11, 2020.Reading time 10 minutes.

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.

P.S. Some of the apps I use for learning to hear:

• Join your local library so you can download audiobooks. I choose the audiobook for print books I already have at home so I can follow the printed text while listening.
• Hearoes https://www.games4hearoes.com/ FREE https://www.facebook.com/hearoesapp/
• Angelsound http://angelsound.tigerspeech.com/ FREE
• Children’s picture books are highly recommended – use Storyline Online https://www.storylineonline.net/ You can turn on captions, or, if you want to challenge yourself, turn them off

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.

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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.

It Did Change My Life

January 13, 2020.Reading time 29 minutes.

Cochlear Implant Activation, 9^th January

The alarm is sounding. It’s 6am. But it doesn’t wake me, my husband does. I am lying on my “good’ hearing ear, so I hear nothing. He touches me to wake me and I struggle to open my eyes. I’m tired. I’m so tired. I haven’t slept well because it’s hot and humid. The night-time low was 24 degrees Celsius.

I roll over and vertigo hits me, followed by nausea.

Great, I think, as my world spins. I hold still and the room stops spinning and the nausea goes. BPPV. A misalignment of the crystals in the inner ear. I know I can do the Epley Manoeuvre to stop it. But I don’t want to do it until I check with my Cochlear Surgeon in 4 weeks’ time.

I breathe a messy breath through my lips and sit up. First, I focus on the wall to check that my world is not spinning again, then stand slowly, to ascertain whether my balance feels okay. I remember it’s Cochlear activation day. But I’m so tired. Activation can’t be on a day when I am exhausted before the day begins. It didn’t happen that way in my imagination when I looked forward to hearing again. I sigh.

I push forward with my morning routine. Breakfast is low key. Toast with peanut butter and a cup of tea. Anxiety joins my shadow, Meniere’s, and me at the table. The three of us together again. I frown. Why do I feel anxious about activation, but not about the two-hour surgery where they drilled a hole in my skull three weeks ago?

I stop before the door before we leave to drive to the city. I feel safe here, behind the closed door. Comfortable. Once I open that door, my world is going to change. I take a deep breath, place my hand on the doorknob and turn it.

I step out into my future.

My husband and I arrive early for the appointment. We sit in the waiting room where the perfectly arranged magazines adorn the table, that have been painstakingly presented. When my husband takes a magazine, flips through it and plops it back on the table, I can’t help but to straighten it up so it is like the others.

I look up when I think I hear my name called.

Jane, my cochlear audiologist greets me with a smile. The universal language that puts you at ease. Anxiety, Tinnitus, Deafness, My Shadow, Meniere’s, my husband, and I follow her to her office. We all sit down, except for my shadow, Meniere’s. He’s jumping up at the window overlooking the city, and sliding down with a giggle. I shake my head at him.

‘Welcome back,’ Jane says. ‘How did the surgery go?’

‘Good,’ I say. ‘I’ve had no pain, no major vertigo, just little spins when I roll over. BPPV. I can fix that with the Epley Manoeuvre, but I want to wait until I see my surgeon in a few weeks.’

Jane shakes her head. ‘The little spins may not be BPPV. Sometimes drilling the hole in your skull can upset your inner ear and cause that. It will get better.’

Oh. I am surprised by that information. I smile. ‘The surgeon managed to get the 22 electrodes all the way in. He was really happy with that.’

‘Wonderful. Plus you have two earth electrodes in there as well.’ Immediately my mind turns to the memory of me out in the storm the other day. I had rushed inside in case my implant attracted lightning.

Then, on researching lightning and Cochlear Implants, I am no more likely to be struck by lightning than anyone else. Phew!

Jane turns to my husband and shows him what has been implanted into the cochlear of my inner ear. ‘The electrodes are 1/5 of the width of a hair strand, in size.’ My husband’s jaw drops to the floor. He shakes his head. It’s hard to comprehend.

‘Okay. Are you ready for today?’ she asks.

I nod, and see Anxiety double his size beside me. I want to grab a pen and stabbed him so he farts all the air out of him. My shadow, Meniere’s, sits in the corner and lowers his head. Tinnitus is doing pirouettes in a tutu. My life really is a circus!

Jane places the external hardware over my ear, attaches the transmitting coil to the magnet that sits under my skin on my scalp, all the while explaining how it works. The enthusiasm in her voice tells me how much she loves her job. She is super excited about switching on my Cochlear Implant.

Once the processor and transmitter are in place, Jane sits on her chair. I’m knotting my fingers together as my skin burns. I frown. I can’t hear a thing in my Meniere’s ear. Nothing has changed. My tinnitus is still screaming at me.

She attaches a wire to the speech processor around my ear and taps a few keys on the computer. She smiles and says all the electrodes are looking good. Then she taps another key and I still. My heart starts to race and my eyes widen. I can hear a few crackles and pops.

‘Can you hear this, Julieann?’ she asks in her English accented voice.

Three beeps sound in my deaf ear. Then another three at a different pitch, and another three.

‘Yes,’ I say, my voice cracking. I cover my eyes as tears fall. I can’t stop from crying.

‘I can hear that,’ I add.

‘Good,’ she says and smiles. ‘Are you okay? There’s tissues behind you.’

‘Yes,’ I squeak. I grab a tissue and look over at my husband. His eyes are red-rimmed and wet. He has been a part of my journey. Twenty-five years of being a spectator to my incurable Meniere’s disease, where he could do absolutely nothing to help me, except clean out the vomit bucket time after time after time after I had vomited violently whilst spinning, or attending the emergency room when I was so dehydrated from vomiting that it was dangerous to my health, or when we thought the violent spinning wouldn’t end. We’ve been married for 31 years. He knows exactly what physical, emotional and psychological toll it has taken on me. He has seen me during my darkest days.

Yet, I spared him from witnessing the darkest of dark days when I no longer wanted to be here, when I wasn’t the colour of grey with an “e”, nor the colour of gray with an “a”, but the colour of black.

From my novel – ‘The Colour of Broken’ – Yolande, the main character is sitting in the chair, talking to her psychologist …

‘What colour are you?’

I took a deep breath and twisted my fingers together. My stomach tightened. I cleared my throat. ‘The colour of broken …’

Dr Jones was silent.

I stopped breathing when anxiety rose inside me like a wall of lava, about to incinerate me. It was freaking me out that she now knew this about me, and that she had not reacted to the description of my colour.

‘And what colour would that be?’ she finally asked.

I breathed out through my lips, slowly, steadily, counting to five in my head. ‘Gray with an “a”.’

‘There’s a difference?’

‘Oh, yes. Grey with an “e” is very different to gray with an “a”.’

‘How?’

‘Grey with an “e” is like the rain clouds. It’s melancholy, but an enjoyable melancholy that builds up until it releases, and then it’s like petrichor, the smell of the rain after warm, dry weather. Satisfying. Grey with an “e” is also when deep thought, philosophy and ponderings happen. Everyone should experience grey with an “e”, it helps to discover parts of you that you never knew existed, and it can vanish without leaving a bitter aftertaste.’

‘Tell me about gray with an “a”.’

I looked down at my knotted hands. ‘Gray with an “a” is … never enjoyable—it’s a very dark gray. It’s self-judgement, doom and gloom, forever hanging around and within. It wants to drag you into the dark abyss of the colour black, that absorbs all colours … the colour of self-condemnation, the colour of depression, the colour of death of the physical body.’

‘But not the spiritual body?’

‘No.’ I didn’t want to add any more to this conversation. It was painful to talk about.
‘So, me being a supposedly normal person, could I see your gray with an “a”?’
‘No. Because I mask it. And my gray with an “a” is not a plain gray with an “a”. It’s a crackled dark gray, with other colours that seep out … sometimes.’

‘What colours would they be?’

‘Drips of red for anger … specks of black—’ for self-hate, ‘—for my secret, blushes of pink for my love for Mia and my family, and explosions of turquoise that screams at me to love myself …’

‘That’s very insightful, Yolande. It’s highly intuitive. I’m curious … when you look at me, what colour am I?’

I hesitated before I spoke. I never told anyone the colour I had appointed to them for fear of them running from me. But Dr Jones, she was different, she would understand …

‘You are … magenta,’ I finally said. ‘It’s the colour of a person who helps to construct harmony and balance in life, hope and aspiration for a better world—mentally and emotionally,’ I said, and held my breath, waiting for her reaction.

She raised her eyebrows at me. ‘That’s an amazing gift to have in your mind toolbox, Yolande. Does it ever lie to you?’

Jane says, ‘I’m going to switch on each of the electrodes, one by one. Tap on the table when you hear the beeps.’

And so it begins. As I hear beeps, and tap on the table, hope rises in me like a flower blooming, facing its sun. I hear 21 out of 22 electrodes. Jane is ecstatic.

I am in shock and a tears trickles down my face. I can hear!

She looks at me and smiles. ‘Do you need a break?’

‘No,’ I say. I am beyond fascinated. In awe. What an age to live in with medical science, discoveries and inventions.

‘Let’s try some speech,’ she says. She taps a few more keys, and suddenly there are words in my Cochlear Implanted ear.

I start crying, wiping a thousand tears from my cheeks. ‘I can hear what you are saying,’ I sob. ‘But you sound like you have been inhaling helium!’

Jane’s face lights up with a smile. ‘You can! That is so wonderful!’ She is looking at me with a contagious joy.

She continues talking. I hear her chipmunk voice, but I can’t understand her. She keeps talking, and with my good ear, I understand that, as she keeps talking for another 10 minutes, my brain will start understanding better. She says the hearing part of the left side of my brain has been used for some other processes since I lost my hearing. And now it is shuffling, trying to find my speech and sound memories, to make sense of what it is hearing. It is using auditory pathways and memories, and must work at a higher level to pull together the information to have bi-normal hearing. The brain must code all the information coming in.

And then suddenly, like a light has been turned on, I can understand much of what she is saying, as words. Not all of them, but quite a few. For the words I don’t get, my mind fills in the blanks with words to match the meaning of what she is saying.

I am speechless.

She turns to my husband. ‘Say something to Julieann.’

I look at him and smile.

He smiles back. I see his lips move. I wait for the sound of his chipmunk voice. I swallow and my skin burns. His voice doesn’t even register as a chipmunk. I can’t hear his voice at all!

His eyes widen in panic.

Jane jumps in quickly in a calm and encouraging voice. ‘That’s okay. It will happen.’

Jane reaches over and pulls out a foam ear plug and puts it firmly into my good ear.

Then she places a hearing muff over my good ear.

I have lost all hearing that I have been relying on to hear and understand conversation.

Jane continues talking like we are in a normal everyday conversation. I stare at her, trying to get what she is saying. It is so hard. Her voice is sound, but not words.

I focus harder, and slowly some of the sounds become words.

She stops and asks me a question. I stare at her blankly. I am trying to figure out what she has asked. I am trying to piece together what words I understood of the question, and with the missing words, I am working on using any visual cues from what she is doing, plus I am trying to read her lips.

Finally, I answer with a smile. ‘Yes. I can hear you. And your speech is starting to sound like words.’

‘Well done!’ she says. And I understand her chipmunk voice perfectly. She then explains about the delay happening in my brain with the speech and understanding. She knows how hard I am working to try and understand the new input into my brain.

‘Can you hear this?’ she rattles a piece of paper in front of her.

‘Yes,’ I say, although it doesn’t sound like paper, but an unrecognisable noise.

She stands and goes behind me and I hear another noise. I nod my head. I can hear it. She shows me a tissue that she rubbed in her palms. I am absolutely gobsmacked. She asks me to repeat words. I get most of them right, guessing some of them. Then Jane covers her mouth so I can’t read her lips. I hear her, but not clearly enough and get some of the words wrong.

She turns to my husband and asks him to speak to me again, and he does.

I still can’t understand him, at all.

She tells him to slow down and breaks his sentences into chunks, and not to run the words together.

He tries again.

I smile at him and say, ‘No. You don’t sound like Darth Vader.’ He smiles. He’s happy now.

Jane grins. She goes through the Cochlear Australia backpack that is mine to keep. It is filled with bits and pieces for care of my Cochlear Implant external hardware, plus other bits and pieces and chargers and batteries and paraphernalia. She shows me how to use everything, and then asks me to do the same. It fits in perfectly with my teaching philosophy.

After two hours of intense concentration, she asks in her chipmunk voice, ‘Is there anything you want to ask me before you leave today?’

I think for a moment. I’ve had way too much information overload. My brain is working double time and I am tired. ‘Is it okay to wear my new hearing to the Big Bash Cricket tonight?’

Jane laughs. ‘Yes. If you like. It will be very noisy though.’

My husband and I leave her office, take the elevator and walk out into the real world. I stop for a moment, wondering if I can hold my emotions together. The impact of activation has been overwhelming. Two hours ago I had walked into Jane’s office deaf in one ear. Now I walk out, hearing with two ears.

The thought is profound.

My husband looks at me. ‘Are you okay?’ His eyebrows are pulled together. For a moment, I wonder how hard this has been on him?

‘Yes.’ I blink away tears, then start to walk again.

The world is noisy. Terribly noisy. I hear everything in a tinny, echoing, chipmunk way. My brain is detecting two lots of hearing with everything – my deaf, now hearing Meniere’s ear, hearing conversations of chipmunk voices, and chipmunk city noises of its own while I listen with my good ear to the same thing with normal hearing. The two sides of my brain haven’t synced yet. They are acting independently of each other.

I laugh to myself. How privileged am I to be able to experience this oddity? My heart overflows with gratitude.

I take confident steps into my new normal. Into my future. Bilateral hearing. Something I haven’t had for 15 years. Something I thought would be impossible.

Before I go to bed, I remove the external hardware. Immediately my ear feels full and profoundly deaf. My tinnitus returns. But that’s okay. That’s my other normal. Two of me.

I reflect on my most extraordinary day – five times I have stilled at big moments:

When the Cochlear Implant was activated and I could hear! My mind was blown!
When I heard music. I cried so hard my husband wanted to pull over the car to make sure I was okay.
I located the direction of a sound. I haven’t been able to find where a sound is coming from for 15 years. This ramifications of this for me in the classroom will change my stress level as I teach.
I heard a man’s lower chipmunk voice while waiting to catch the bus after the cricket …

The cricket … I think back to the Big Bash Cricket and smile. On entry, I was pulled aside for a security check, the metal detector waved over and around me – it always happens to me at airports too. It’s become a running joke with my family. I held my breath, wondering whether my Cochlear Implant would set the detector off, but it didn’t.

And Jane was right. The Big Bash was very noisy. But it was so worth it. And I’m taking marshmallows to toast in the flame next time!

And number 5 … I entered our walk-in wardrobe. As I stood there trying to decide what to wear to the cricket, I froze. Something was wrong. Very wrong. My heart raced and I started to panic. I couldn’t hear anything. Not even from my “good” ear. I felt for the Cochlear Implant external hardware. It was still there. I ran my hands over my arms to make sure I was still me, and I wasn’t dying – seriously!

Something wasn’t right.

I could hear absolutely nothing. Nothing! I spoke to check that the Cochlear Implant was still working. Maybe the power pack had gone flat? I heard my own voice as well as my chipmunk voice. Two of me. I stopped and listened again in the stillness of my walk-in wardrobe.

There was silence. Utter. Beautiful. Silence. No tinnitus. After a quarter of a century. I closed my eyes and let my tears fall, covered my mouth and ugly cried.

The gift of hearing. I am so beyond thankful. I have no words to explain what it feels like to have the Cochlear Implant activated and to hear again. My faith. Health professionals. Family. Support of friends and Facebook groups. It takes a tribe.

The Cochlear Implant has changed my life. On activation. It has made the impossible, possible. Meniere’s disease may not be curable, yet, but we can take back from Meniere’s what is has taken from us.

Next blog – learning to hear again …

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.

https://www.facebook.com/julieannwallace.author/

https://www.julieannwallaceauthor.com/

A Meniere's Art Series 7 illustrations without text, with text, with headings Freed

A Meniere's Art Series 7 illustrations without text, with text, with headings Freed2

A Meniere's Art Series 7 illustrations without text, with text, with headings Freed3

A Meniere's Art Series 7 illustrations without text, with text, with headings Freed4

Meniere’s Journals are available for pre-order at Lilly Pilly Publishing & Amazon (30 Jan. 2020). Profits are donated from ‘The Colour of Broken’ and the Journals to Meniere’s research to help find a cure.

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 #12

January 11, 2020.Reading time 9 minutes.

It’s two days before my Cochlear Implant activation and I’m sitting at my desk, writing my new novel. An overwhelming emotion hits. I want to cry. I want to ugly cry. I catch my sob and swallow the lump in my throat and refocus on my writing, listening to cello music with my right ear, trying in vain to hear over the incessant extra loud tinnitus in my deaf left ear – five different noises. It always wins, even at music concerts. I haven’t heard silence for 23 years. Nothing I can listen to masks the sound of tinnitus.

Three years ago, I received a cello as a birthday gift. I wanted to learn to play it so I could hear the music in my memory when all my hearing was gone. I wanted to play it and feel the vibration of the music inside me, so I could burn into my mind how music would make me feel when I could no longer hear. The emotion of music. That is why we all love it so much. It makes us feel. Emotion. It’s what makes us human.

I’ve been playing the piano since I was eight, and can see the written notes inside my head when music is played. I can look at a sheet of music with no sound, and hear the sound of the inky notes on the paper. But it’s the cello I love the most.

You never realise how important something is until it is gone. Anyone who has something wrong with their body can vouch for that. Look after yourself. Not that I did anything wrong to lose my hearing. It is Meniere’s disease that has done that. I hate it with a passion – not just for me, but what it does to people. I know several people with Meniere’s who have taken their lives because of it.

No more. No. More. Enough is enough.

Sometimes, when I am playing music on my computer whilst writing or working, I stop and put my hands on the two speakers on my desk, and place my foot on the sub-woofer on the floor. I close my eyes and concentrate on the feel of the vibration. The vibration of the high and low sounds and everything in between. The light vibration. The strong vibration. The combination of vibrations.

I would love it. And hate it.

I would love it because I could still hear it with my “good” ear.

I would hate it because I am losing hearing in my “good” ear as well. It would kill me each time, knowing that one day I would never hear music again while walking the Earth. Did I do something to cause this? It tortures my mind if I let it. Then I am reminded that my life is all the more richer because of what I have been through.

It’s the day before activation.

I’m almost going into a panic. Breathe. I feel like a bird that has been trapped inside a cage for too long for it to remember freedom, and when the door is opened for it to fly from its prison, it stays there, because it feels safe.

This is me. A prisoner in my own body. I’ve had Meniere’s disease for 25 years this year. Nearly half of my lifetime. To be honest, there are many days that have been hell. Friends and family never saw that. They only saw the happy me. The one wearing the mask, fooling the world that I was okay. I faked being well. I’m a pro at it. I can’t remember what it’s like to feel “normal”. My life with Meniere’s disease is lived within strict limits as to what I can do. What I can eat. Choosing to isolate myself from social activities because I can’t hear, or I am scared of having a vertigo attack, or the worst one – rejection – because of my hearing loss and I can’t participate, or because I have answered a question wrongly because I couldn’t hear them, and I didn’t want to ask them what they had said for the fifth time.

To have no vertigo. No tinnitus. And have hearing in my left ear again … what is that? Is it even possible? What will I become? Will I still be me?

I admit. I am struggling big time. So I keep working on my new novel.

I’m 13,000 words in, and it keeps me from dwelling on the upcoming, perhaps, life changing event tomorrow. In every Cochlear implant group I have joined, the words keep being repeated, “it will change your life”.

But how? Is it that I will be able to hear from my left ear again? And that’s it. What exactly will it change in my life? Will I like it?

Activation Day…

Cochlear Implant activated. My mind blown.

My brain is scattered as I write this blog.

A thousand tears of feelings and thoughts, marvelling at technology – invented in Australia. Eternal thanks to you, Professor Graeme Clark.

I have warned my family – “Danger. I may break into unpredictable sobbing at any time. Good tears. Very good tears.”

I am overwhelmed by feelings of intense happiness. Feelings of release from the Meniere’s prison. A billion memories of my life with Meniere’s and what I have been through. The vertigo. The abhorrent vertigo of hell that takes your hearing. The darkness of depression that wants to take your last breath.

I feel like I have been freed.

I can’t write anymore today … I am too overwhelmed with emotion, and noise, and information. The world is so unbelievably noisy with a Cochlear Implant.

When the impossible becomes possible. I am so beyond thankful …

Next post … during activation xx

About this blog …

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

Meniere’s Journal – coming to Amazon soon.
Available for pre-order at https://www.lillypillypublishing.com/product-page/meniere-s-journey-pre-order

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 …

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

My Shadow – Meniere's

Tag: Cochlear Australia

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