I was invited to speak at the World ENT Conference in Cape Town about my experience. I am sharing a short video which is not that good quality because of the bad acoustic in the room as well as poor light.
This is my full speech, please take the time to read it, as this will give a full grasp of my journey, the impact this implant have on my life and how grateful I am to every key player in my life, and that includes you.
My speech:
Good evening ladies and gentleman
It is an honour to be here tonight and to be able to share the room with so many brilliant minds, people who are passionate and dedicated to change and make people’s lives better, and I am happy to say that I am one of those lucky people.
One of my favourite quotes is by Dr. Caroline Leaf: “God inspired man to find out what He has hid in nature, so science is the discovering of all these hidden things about God as time passes…”
I would like to start with a little background about myself and my hearing. My hearing declined from the age of 14 and only affected me in our family. I grew up in Wepener. Raise a hand if you know where that is? Hahaha, I thought so.
Music, is our ‘thing’, my Dad not so much, but he did introduce us to some of his favourites, like Nana Mouscouri, Dean Martin and Frank Sinatra. As children, my brother David, little sister Clare-Marie and I often performed together, we sang in the Bloemfontein Children’s choir, played the piano and travelled across the country to sing for people. We shared world stages together to sing.
I never thought that life would lead me here, to this stage tonight.
My family did not notice my hearing loss at first, which is actually funny, we had a big house and my mother would call me from the sitting room in the front of the house when I was on the other side of the house, obviously I didn’t hear her calling. I have to admit; I was a strong willed child and my mother thought that I was ignoring her.
One day I asked my father: “Papsie will you please take me to the GP, I think I have wax in my ears”. It was not the case and our GP referred us to a specialist in Bloemfontein.
At the age of 15 my hearing loss was confirmed by my audiologist, Deon Ceronio and Dr. Hough performed my first stapedectomy at the age of 16. The second one was done 3 years later. We all thought my hearing was back to almost normal, I was sorted.
In 2002, in my final year of studies at University, I started to notice that I had difficulty hearing in the classroom and I called Deon up again, and he confirmed that I had severe hearing loss by then and proposed hearing aids.
As a 20-something-year old girl in peak season of her social life, I did not take this news very well and said to him that I had just got rid of my glasses, I was short sighted and, there is no way that I am putting anything back on my head and ears, I would rather learn to speak sign language. And I left it there.
7 years later, I came to my senses. The communication struggle was affecting my personality and work. Deon fitted met with in-the-ear hearing aids.
I struggled to adjust with the hearing aids, partly because of my great auditory memory of sounds and my love for music. Nothing sounded the same. I only wore my hearing aids when absolutely necessary, which was not optimal.
For almost 10 years my hearing was stable, but then an ENT confirmed stage 3 otosclerosis in 2013.
The same year I started music therapy lessons with Hannah van Niekerk, a well known opera singer and vocal coach. I believed that we could stimulate my hearing nerves and were hopeful that we would preserve my hearing this way.
I am going to leave the history part of my story there, however, I do want to tell you that during the 25
years of my hearing loss there were times that I felt different and isolated. This was aggravated by societal influences and people calling me dumb or upstairs. But all of these feelings and external events never took root in my soul. We were raised to work hard, self pity was never an option. I was determined to succeed in life, to be strong and not a victim of this cruel disability.
Fast forward, my cochlear journey started a little over a year ago when Pieter, my partner in crime, rushed home with a bunch of device brochures, after a meeting with one of his clients in the industry. (I think he got a speeding ticket that day.)
He knew very well that I was firmly against the idea of a cochlear implant. (He secretly had a song in his heart)
I had a look at these brochures, just for interest sake and I was surprised to see how technology improved. I immediately started research on all the devices available in the market. Pieter and my family will confirm that I am quite the researcher, in Afrikaans we would say I know how to separate ‘die koeie van die skape’
I knew my hearing was declining fast, communication became increasingly difficult with my hearing aids. Going to church was difficult for me; we could not go to movies anymore and socialising in big groups was virtually impossible. My isolation became in internal battle, I hid from everyone. To put it mildly date nights took a big blow, haha!
The knowledge of these new improved devices, filled me with immense hope and I could finally face the truth of my situation and called Deon again to discuss my discoveries and he said the first step for us is to do another test.
In October 2017 I met with audiologist Marianna van Heerden at Deon’s practice in Bloemfontein. She confirmed that I was a cochlear implant candidate and said it was rather urgent for me, I only had 5% hearing left in my left ear and she pressed the urgency.
At first, this was a massive blow for me and emotions were running high. Pieter remained a pillar of strength for me during this time and I he had a great deal of comforting to do!
Deon patiently walked me through the options and next steps as our biggest obstacle was the otosclerosis. I knew I could trust Deon, because he has treated me for over 20 years.
At first, I did not share the news with my family or friends. I first needed to come to terms with it.
I needed to know everything and what I am getting myself into, fast. I mean it’s not like buying a car.
In Cape Town, Pieter and I met with the Med-El team.
I wanted to look at the electrodes, I needed more information on the company, their success rate, the quality of sound and what their experience with otosclerosis was.
One of the first signs for me was, that the women who received the first implant from Medel was in 1979, my birth year.
Medel also provided the option to build me a custom electrode to better manage the otosclerosis and higher risk of FNS
We drove home that day, and I said to Pieter, I think this is it.
One of the key factors for me in my hearing journey is the ability to build and maintain good relationships, and of course trust. To an extend the instruments play a big part, but it’s the people behind the instruments that are far more important to me. With hearing it becomes so much more intimate and precious. It’s a journey for life.
In December 2017, I finally came to the point where I realised this is it, I need to get my brave face on. I decided to call my brother in Auckland to share
the news with him. He was so sad, because over the years he was really such a presence in my life and stepped up for me in difficult situations. In a way I think he felt guilty that I am the one who were dealt this card.
April 2018, I met with Deon for my final evaluation and the ball was rolling.
Deon and Dr. Butler raised further concern about the electrode choice and my otosclerosis. Now this caused a great deal of stress for me and I kind of felt that I want to back out of the surgery at this stage.
June 2018, I had my consult with Dr. Butler in Port Elizabeth. With the first handshake he completely erased my paralysing fear.
His communication was clear, he was pragmatic and detailed which resonated with me.
With all the facts and data there are no guarantees and I had to visualize how I was going to manage the facial nerve stimulation, should it be present. That is how I decided on Med-El. It was the commitment that they showed to me from the very first meeting, the relationship and the trust that they build with me in a very short time.
And so surgery was scheduled for the 6th of September 2018.
In the 10 weeks leading to my surgery, actually from the very start of this journey, I decided to be positive, no matter what. I gathered the support of only my trusted inner-circle. This became a group effort. I know now that my younger sister Clare said a prayer in Auckland every night before going to bed, we spoke life, meditated on the perfect outcome in every step of this journey, the finances, the surgery, the recovery process and the activation.
For the very first time in my life every single aspect ran smoothly. Miracle upon Miracle happened right in front of me.
Thursday morning we arrived at St. Georges hospital. I was first on the theatre list, surgery was scheduled for 8am. The staff and nurses were absolutely amazing.
And I was shipped off – BRAVE FACE. I walked myself into theatre and just out of nowhere my body started to shake up. It was like the body knew what was coming and I had no control over it. Dr. Butler immediately took my hand in his and I knew God was directing this orchestra.
Like I said, miracle after miracle happened. My recovery with my previous surgeries was really difficult, because of the vertigo and nausea I experienced. And anaesthesia is not my friend, let me tell you that.
Two days later we travelled back to Cape Town by car and activation was scheduled for the 1st of October.
My brother flew from Auckland to join me for this very important date in my hearing journey. We met with Deon and Marianna in Bloemfontein. I took my mother, brother, Pieter and Bibi our little yorkie, the watch dog with me because this was it, the moment of truth.
Later that afternoon, my mother and I started practising, she read to me from the Bible and I could follow every word she read. We played on the piano and I could distinguish between the different notes up to La from middle C. I turned my back to her, she called out items in the room, and I named them one by one. Just so that you know, previously, I had great difficulty to hear her voice even with my hearing aids.
5 days later I could already watch television and follow the conversation with only my processor on.
In some ways I had become a child again, discovering the world of sound. I caught myself walking up and down the house as I rediscovered the sound of my flip-flops. A sound I have completely forgotten and loved so much as a child.
A week ago, I said to Pieter, for the very first time this year, I am feeling alive. We are stunned and honestly cannot believe how well I am responding. I can’t wait to put on my processor in the morning. Sounds are beautiful and it is getting better every day.
It is the best decision of my life and I would not have been able to do this alone.
Tonight I am blessed and grateful. I am honouring my Shepherd, He blessed and healed me in a different way, and this is HIS miracle, His science and the people sitting in this room.
I am honouring my every day #hearlife partner, Pieter Theron. Thank you for sticking it out with me the past 9 years, I mean it’s not easy to live with me… the days of movie subtitles are soon over. I love you so much, and back to speed dating. (HAHA)
My brother, my constant mediator.
My sister, for her support from halfway around the world, her love and amazing perspective on life and my mother for her love and care.
My late “Papsie”, I know you would be so proud of me.
My medical team, the angels:
Deon, thank you for pushing me and all your patience over years.
Marianna for your expert knowledge and dedication to your work.
Dr. Butler, for dedicating your life to be the best in your field and taking me on as your patient. To the next 20 years.
Last but not least, Medel. Charles, Elicia and the rest of the Medel team, for being objective and sincere from the very first day we met and to commit to my #hearlife.
My goal is to work hard and to regain my love for music and music ability, and to one day be able to share the music stage again with my family.
Thank you.
