My parents found out I had CRS (congential rubella syndrome) or RS (rubella syndrome) when I was born in 1985. They decided to bring me to Australia from Malaysia where I was born because they had support in Australia for my medical/special needs. I have been an outpatient to the hospitals or specialists for my eyes and ears for many years. I had an eye surgery to remove the cataract in Adelaide when I was 6 months old before returning home to Darwin. I didn’t wear glasses or contact lenses and hearing aids until I was 2 years old.
Throughout the years, I have moved three times to Darwin (1985 to 1992), Perth (1992 to 1997) and then Melbourne (1998 towards) because my father was the former sergeant at RAAF (Royal Australian Air Force) for over 20 years. My family and I went overseas to visit my extensive family in Malaysia between 1985 and 1992. I had attended different schools through my primary and high school years. Life is not easy but lots of different chapters each year.
Some of my friends didn’t know I had CRS until I explained to them because I was afraid of telling and kept it hidden. But they accepted me, and it as part of who I am. In my 20s I didn’t realise what CRS is because I knew my parents told me I had CRS as a little girl but I forgot everything. Later I decided to read the information on the internet because it might be useful. I thought I was a normal person without the eyesight condition but I was not. My eyesight is full of blur, fog, hazy and out of focus it is double vision than normal vision at 20/20. My right eye is straight and wide view but my left eye is not correct because it keeps left and small view. My eyesight does not change because it is still the same since birth. I wear contact lenses. If I don’t wear contact lenses, I wear very thick glasses like the magnifying glass. I hadn’t recognised myself as deafblind in my life until now what I accept the part of deafblind that relates to CRS.
I had enjoyed my life with adventures, travels, art/craft, cooking, reading, anything. Yet I moved back to Perth and I married and have two young sons. I divide my time between Perth and Melbourne where I visit for holidays. I work as the cleaner at a childcare centre where I live nearby. Apart from the deaf community and deafblind community, I have more new hearing friends through my work, neighbours, my sons’ school and local community. I do lip-read and speak in English because I have a cochlear implant which has helped me so much to learn with listening and speaking. I do sign in Auslan but my influence is strong Auslan from Melbourne since it changed so much through old English and signed English back in 1990s. I learnt it so much I am more independent I travel on public transport that I am not afraid of. I achieve everything I can do it.
My friends know I have CRS so they encouraged me to go and join with the deafblind community, I had never before or never tried. The first time I just met new faces at the deafblind social last July. It made me feel confident and I realised I am part of the new community. My life is important for the future.
Published January 6, 2016.