My name is Tanya Carroll. I am a 47 year old married mother of 3 adult children. Growing up in my earlier years was a bit of struggle as l sort knew there was something wrong with my damaged brain and l am also profoundly deaf on my left side. My schooling years back then were not easy for those like myself who were different from the rest of the school kids around my age. I’m not sure if my mother told the school that l was actually a student with an acquired brain injury since my birth either. Technically being a baby born in the early 70s l was also misdiagnosed with not only a ‘mental retardation’ label right up to the late 80s. In the early 90s it got changed to the Intellectual Disability.
I didn’t know about my actual true identity until early 2006 as l didn’t know at that time the serious issues of my birth defect at all. So, in the last 15 to 16 years l had to learn and understand not only about myself but my disability l was born with.
Technically back in early 2006 I spent nearly 6 weeks in the Townsville hospital then came home to see my local GP who told me l needed a mental health check-up. l was involved in a major single car accident that l was the driver and my late father-in-law was the passenger going back home from his Cairns medical apt. It was after my doctor’s appointment to give me my mental health check-up. The form that had my name and my age, had intellectual disability wording on it too. I was a married mother of three kids. I had no idea at that time that l was also a person with an actual disability since my birth.
My own parents did not tell me anything about it either. Nothing at all. What l did fine out when my daughter was only 4 months old was that l was born with a rare genetic brain disorder (cavum septum pellucidum) in late 2001. It was all new to me. The meaning of that wording was something do with my brain damage that l was born with. It wasn’t until late June 2020 that l came across a site about corpus callosum disorders which was Australian Disorders of the Corpus Callosum (AusDoCC).
Technically, since that night reading what AusDoCC was all about, in a way l was also reading about myself, especially about it being a neurological birth defect with other conditions present like autism and other brain malformations in play too. I just couldn’t believe my eyes in what l was reading. Finally, my once empty world, (l thought l was the only one living with it) opened up to my new world with others who had also been going though it too. I have never looked back since that night. l had learned so much from other brain injury Facebook groups and l thought l was actually meant to be in those groups but l feel l can be more of a help being part of the AusDoCC big family.
When l was asked to be part of the AGLAP, l jumped at the chance of actually doing something right for a change to help others who are also going through a similar thing like myself. As a peer researcher l’m hoping to put my good knowledge to use in a positive way where this rare, genetic brain disorder gets the awareness and knowledge it actually deserves. One of the main goals as part of this panel is the change how those within the community and society see those with DCC to be heard and understood, especially within the medical world. Not only local GPs but number of other medical specialists within hospitals and specialists we see, just because we look so damned normal on the outside, like every other person within the society itself. The cognitive defect goes hand in hand living with DCC too.
I also found out this June just gone (2021) that I have a thin corpus callosum (hypoplasia). All l know is l wasn’t supposed to survive the day l was born due to the lack of oxygen getting to my brain at that time and l didn’t hardly move much or wake up until 12 hrs after my birth. Since l was born, l am well aware that l have got more than one disorder and impairment that l have been dealing with ever since. l have known most of them but not all of them. In my very early years like kindy and preschool l remember l was a very quiet child who at most times l got into trouble and ended up in sitting in a naughty chair in the corner or being sent to the adult teacher’s toilet area on my own until l came out and apologised for what l had done. I can still remember it like yesterday even when it all happened well over 40 years ago. School years were very rough time for me.
The one thing l do know is that being born with a CCD has been a challenge most of my life and also a blessing in a way knowing that there are others who also need help and understanding and what it means to them too. It also goes back to level of the capacity of those who are dealing with it depending on the level of education they had and those who also cannot medically work due to reason of their DCC. It all comes down to the Neurological Birth defect to the main area of the brain that is not only rare but it is also not understood by many who choose to either ignore it or don’t accept that it is also very real to those who has been living with it for most of their lives like myself who been getting ignored by these who are supposed to help me.