As Christmas draws closer, I am reminded of all those years where I would start to worry about whether I would be unwell, and have a four hour vertigo attack on Christmas day, ruining everyone’s plans, or whether something I ate would set off a cluster of vertigo attacks, debilitating me for nine days out of fourteen.
Thankfully, gentamicin injected into my middle ear in 2004, destroying my balance cells, stopped my Meniere’s vertigo attacks – an answered prayer. But sometimes, in the back of my mind is always the thought, “What if the vertigo returns?”
I have to consciously choose not to focus on that thought, instead, focussing on the positives. So here’s something I’d like to gift to you.
I’d like to gift you a FREE eBook copy of my bestselling novel that has been raising awareness about Meniere’s disease, which shares similar vestibular symptoms that COVID patients have experienced – vertigo, hearing loss, brain fog, tinnitus …
I pleased to say that ‘The Colour of Broken’ was longlisted earlier this year (2021) to be made into a movie or tv series.
And it has been an Amazon #1 in its category, three times.
Grab a copy and see what all the fuss is about. It’s FREE on the 23rd, 24th and 25th of December, 2021.
If you read the novel, I hope the story touches you where you need to be touched.
Wishing you a very merry Christmas filled with joy and thankfulness.
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 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.
Art work by Julieann Wallace
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 …
My Shadow, Meniere’s, is not just about the physical aspect of a Cochlear Implant – you can research about them online. I am sharing the human side of the journey towards a Cochlear Implant – feelings, appointments, the process, apprehensions, successes, highs and lows as I step into the next chapter of my Meniere’s journey.
I am mindful of those who also have incurable diseases or are walking the path of a diagnosis that is life changing. My blog never aims to undermine the severity of anyone else’s illness, disability or journey. We all deal with life with different tolerances, attitudes and thresholds. ‘My Shadow -Meniere’s’ is my journey. It is my hope that it can help others with Meniere’s disease, or hearing loss, or simply when life has a plot twist.
I also acknowledge those before me, who have already had a Cochlear Implant. Your experiences, advice and suggestions are welcome.
My Shadow - Meniere's 