Waar is gister?

Saturday, January 31, 2009

“Waar is gister”?


I had a dream just before I woke up this morning. I dreamt I was sitting playing with two small children. The game rules demanded that one put a question for the others to reply to and explain. My first question was asking them about why they enjoyed their ballet lesson. Well no great response to that one and absolutely boring! The next question woke me up from my dream when one of them asked: “Waar is gister” Yes! I dream in Afrikaans but it means: “Where is yesterday?” Now don’t you think that HAS to be the theme for today’s blog?


As we grow older I think it becomes more and more important to remember where the “yesterdays” went. Is that not why our long term memory stays intact while the short term memory of the here and now often fails to remember “five minutes ago”? I also think that it is important – at least for me – to tag those yesterdays to prevent them from getting lost altogether. Almost like setting them in stone once and for all for the children of today to have access to them when we are there no more to tell the stories.



How I would have liked to have a write-up of my grandfather and my mother’s stories. All too often missing my mother actually means that I wanted to ask her something from the past and cannot do so anymore. This has become even more important now that I also try to do some genealogy research about my family. I thought I knew a lot about them but discovered that my knowledge is indeed very skimpy.


It is also true that our long time memory tends to highlight the good times rather than the sad ones. I think that is an unintentional manner of protecting ourselves from heartache. So when I get back to “Beyond hearing loss” I will also rather reflect on the good times since you will all realise that the sad memories just evolved around my poor Hennie and his living with the big C.


Back to 1999…


It was towards the middle of 1999 that I started learning about the cochlear implant. My first information was from an article published in “Sarie” - a popular SA women’s magazine. The article was titled: “Sjuut! Luister!!” Meaning “Hush! Listen!” and it told the story of Rosi Adendorff’s cochlear implant and how it restored her hearing and the impact it had on her life.


I now wonder if Rosi perhaps still have a copy of that article? I would love to have it!


What I do remember was that it gave an e-mail address at the end of the article. I did not have e-mail at that stage and only used my computer to write all those text books for my Food Service Institute. My step son in law however had e-mail and he wrote to Rosi on my behalf. The rest is now history!


This is how I recorded the incidents of that time in 1999 on my personal web page:
Quote:

“My hearing loss was first diagnosed in 1975 and from then onwards my gradual downhill journey to the silent world of the hard of hearing commenced. It was not too bad however since Hennie was always there to be my "ears" and I was excellent at lip-reading.


In June 1999 Hennie was terminally ill and I was desperate to hear better!! I went to an audiologist to find out what was "wrong" with my hearing aid but was told that my hearing aid was perfect but that I had a profound hearing loss and I was referred to the CI team at Pretoria University for an evaluation. Hennie strongly opposed all my efforts to get the CI since he firmly believed that nothing could be done about my hearing loss. However, stubborn as I am, I insisted on going for the evaluation and was accepted as a suitable candidate for a CI. It was a very lonely time for me because I had no spousal support and knew that our medical insurance would only cover a part of the costs.


It was then that Rosi Adendorff came into the picture and provided the first CI miracle for me. I started writing to Rosi and we arranged to meet in Pretoria during August 1999. I missed our appointment due to an E-mail message that was received too late. I left a message to her to phone me and hoped for the best.


That same afternoon she phoned...


When the phone rang we had to go through the awkward process that Hennie and I developed for phone conversations. He would tell me that the phone rang; I would answer and ask the caller to talk to Hennie who could not talk loud and clear enough; Hennie would listen; mouth the message to me and pass the phone back for me to talk etc. This time however, he kept on talking!!


When he eventually put the phone down he just said: Wia, this is a miracle!! Do you realise that this woman has a CI and she could hear my bad voice!! You MUST go for the operation!! Rosi came around to our house to meet us and she instantly became my first and very best CI friend! Little did I know at that time how much she would contribute in the time to come to keep me going and bring me back to the hearing world. From then onwards Hennie almost frantically insisted that I had the surgery "before he died" so that I could cope on my own when he would be there no more...


End of quote.


Today the amazing thing is that Rosi was the first to introduce me to Facebook – this you already know, but we also both have bilateral CI’s. I received mine some time before Rosi and I remember telling her snippets about my bilateral CI experience before she received her “second bionic ear”. I also had the pleasure of meeting Rosi again in person last year. (She now lives very far from me in Stellenbosch near Cape Town – more or less 1500 miles from Pretoria). We spent a lovely morning at the Austen Roberts bird Sanctuary also engaging in our mutual interest in photography. Somehow we had more to talk about photography than hearing loss . I wonder why…


“Gister” is ensconced in many happy times when I met my best CI friends during my CI journey…

The first half of 1999

We endured two six week sessions of radio therapy combined with chemo and at the time of his 70th birthday in June that year he was a shadow of the man I married 14 years earlier. However our relationship became better and far more emotional. He started to tell and show me the caring and love that I craved for.

Friday, January 30, 2009

I am so happy with the wonderful reaction to this blog. Thanks so much to all of you who already joined the Facebook Group. It is clear that we are all going to enjoy reviving memories. This blog will not necessarily be a chronological report of my CI journey since dates are less important than the memories although I will try to retain some sort of order as to when and how things happened.To get back to the beginning… The time following Hennie’s operation in January 1999 till about the middle of that year is somewhat of a haze now. Maybe because my brain is deliberately pushing it to the back of my mind because it was so sad and traumatic. I can just remember the inability to communicate easily and all the visits to the Oncology Department for his radiation and Chemo therapy. Also seeing his health decline almost daily but admiring his courage and acceptance of the inevitable onslaught of the cancer on his body.

One specific coversation that I remember very well and will never forget was between him and one of my friends. He thought that I could not hear him but I could lip read perfectly when he said to my friend Phyllis:”Marie was my first wife but Wia is first in my life”
He could still talk but I could not hear his voice that was merely a whisper. However we communicated Ok on a one to one basis since my lip reading was excellent. The days and months just passed with him being less and less able to eat and from the beginning of that year I just battled to keep up with making fluid meals that would contain enough calories for his huge demands for energy. Lots of time went into trying to get special feeds and food supplements for this needs. Thinking back on those days it now feels as if all I did was just seeing that he was comfortable, driving him to doctors and the Oncology Department and making fluid meals… My hearing loss was on the back burner but deep down I had a fear of the future and did not know how I was going to cope once he was there no more but there was no time to reflect too much on this problem.

Today - in hindsight - I realise that it was a blessing in disguise to had to care for Hennie because that helped me not to collapse completely with depression about my hearing loss. In that respect I may have been lucky not to have had the severe depression and anxiety that so many deaf and hard of hearing people experience before they get help with hearing aids or cochlear implants. My hearing loss was just part of my life that I accepted without worrying too much about its impact on my life since the effect of my hearing loss was dulled by Hennie’s needs that I HAD to attend to.
However – when I look back at what I wrote some years ago when compiling my first web page, I did have a lot of anxiety – now – not remembered so well any more since time has done its healing…
My story with all the emotions will remain on my web page because it is part of this journey and my life and should not be deleted or changed. (You can see more of it at http://wia.viawias.com - “CI story”) I wrote (About August 1999) :

“There were many more raw emotions at that time. I now look upon them differently because I realize that those emotions had a severe impact on my ability to adapt with my babblebox three months later. I remember how I missed talking to him, how desperately I longed for the days when we used to sit talking and listening to music till late at night. My thoughts had wings and made numerous return journeys to years gone by when everything was still good and healthy - I wanted to look deeper than just the words that I could not hear and the lips that I could no more read. I felt severely disabled.”

Travelling back to the hearing world...

When adding friends to Facebook yesterday it suddenly dawned on me that it will be ten years in 2009 since I received my first cochlear implant. It so happens also that the first person I added to my friends list on Facebook was Rosi Adendorff who was THE person to get me started on the journey back to the hearing world now about ten years ago.

Apart from Rosi it may not be mere co-incidence that some of the other first friends that I added to Facebook were also with me ten years ago - Patsi Schuhmann, Linda De Bloom Stock, Marilyn Moore Harris and Stuart McNaughton. Of course many others followed and I am as indebted to them for years of wonderful friendships than I am to these first few people who set me off on the road back to hearing... The story will follow as I revive memories from the earlier days and add new ones as I continue...

15 Janauary 1999 marks a turning point in my life... On that day my late husband Hennie had to have surgery to remove a cancerous lymph node from his neck. The surgeon warned us beforehand that he may not be able to speak after this operation.

To understand the impact of this message on my life you have to realise that I was almost completely deaf at that stage and Hennie was my "ears". I relied heavily on him to communicate on my behalf. If he could not talk I would not be able to communicate with him apart from lip reading...

I will never forget the emotions that hit me when I tried to talk to him after the surgery and could not hear him at all! He COULD NOT SPEAK CLEARLY! The lymph node had been removed but in the process the nerve to his vocal cords was also removed... This was the start of a very very sad and traumatic year in my life...

Ten years later I sit here this morning listening to my partner Kalie talking on the phone and I do not even have to look at him to hear what he is saying...I have my wonderful bilateral implants that restored my earing to almost normal levels. I am just so grateful for the ability to hear again and more so to be able to talk to friends and family without much trouble and hardly any requests for repeats.