My name is Lisa Doodeman. I’m 50 years old, born in July 1969. My mother first discovered I had ACC when I was 6 months old.

My nan took me to the royal women’s hospital in Sydney where I was tested. You can imagine how testing was back then. Very little was known then and to this day. My mum could not name what tests were done. The story has it that half of my face was growing faster than the other half of my face. My mum was told to just rotate me, and it should correct itself. Today I have a noticeable difference when comparing one side of my face to the other. I don’t like photos of myself, unless my hair is straightened, and I have a face full of make up on. I have a noticeable gap between my teeth.

At the age of 4 years, 1973, I was sent to a place in Parramatta NSW to undergo what would seem an easy test now. But a 4-year-old. An impossibility. Grabbing shapes and putting them into the correct shape holes. Putting things in order/sequencing.

The diagnosis was that I have a Processing and Sequencing disorder and would struggle through school.

Sitting with my Big Bear (Grandad), him trying to teach

me to count money. Grandad “why is $1 more than 5c?” 1 is less than 5 in a child’s mind. But really all I wanted to do was keep the money, so my mother said.

I was held back from Kindergarten, so I started in 1975 instead of 1974.

Primary school was tough. I looked different, felt different and scholastically I was behind.

 

In Year 7 I was in the special AO class. But the work was too easy. I moved schools. Years 8 to year 10 were even worse. I had more crosses in my maths book for 3 years especially in years 9 and 10 at Camden High school. Maths was hard. I could not understand the information.

I was the one always picked on. That is when I stayed right at the back of the classroom, quiet as a mouse and I made sure I slumped behind my other classmates. To make myself invisible. But somehow the teacher always stood over me and made me feel uncomfortable. Little did I know in 1993 I would run into him and I quote these words he said             “I knew you would not amount to anything”. I was a single mother. That hurt me so deeply. I love my son.

I was very tall and skinny. I was very athletic, did gymnastics, long distance running, could hit a ball and was always the outfielder with a good throw arm in softball. I was always the last one to be picked for a team sport. I loved my own company and did not mix well with other kids. Apparently, I was too blonde, too dumb for them. I was not in with the “in crowd”.

I went on to be married and had 2 other children. My daughter Jade was diagnosed with Epilepsy at age 4 and has a cyst on her brain. My last child, Nathan was born with a missing pituitary gland, Polydactyl syndrome, cleft lip and palate, cerebral palsy, a micro penis as well as Diabetes Insipidus (diabetes salt) and other problems. He passed away years ago aged 25.

Doctors said it was a freak of nature. I did not do any substance abuse, but I had food poisoning before I was 3 months pregnant. There were so many if’s and but’s that not even a paediatrician had the answers. Just treat what we see and know.

Every so often I get really bad headaches, my hearing starts to pop, and my vision is blurred. I wear glasses all the time.

I have tried to put myself through an Accounting course for MYOB. I had to start off with the basic knowledge. It became too overwhelming and impossible to understand. I dropped out. I passed a course with Pittman script shorthand at 50 wpm and can transcribe back to English. I can still touch type to this day.

Then I tried Adult Basic education at TAFE. I enjoyed it that much I enrolled for an extra 6 months. I topped my class. I gave presentations on Cerebral Palsy. I worked out that if I’ve lived the experience that’s when I’m at my best teaching others. I found myself in that 12 months. An awakening. I even made the Illawarra newspaper. It showed me that I was not hopeless.

Life certainly got the best and worst of me from there.

I sat for my driver’s knowledge test, 4 attempts and I got it. I passed my driver’s first go. But getting from my green P’s to my blacks was a challenge. Several attempts and 15 years later, when the law changed it clicked over naturally. Now I’ve been on my black for 10 months, let me tell you, that is a relief and I own my own car.

I suffer with high blood pressure, have obsessive compulsive disorder, and suffer badly with anxiety.

I cook and clean… I am self-taught and I have raised a family on and off, with and without a partner.

For the next 20 years I felt good and bad. At my worst I was suicidal, my psychology stint with counsellors and Shoalhaven area mental health hospital was a lifesaver.

I’m still in recovery.

I’ve worked at “House With No Steps” as an employee and loved it, but something snapped in me. I found myself overwhelmed by people’s comments and personal experiences with my youngest child really clouded my thoughts. I was then not able to function mentally. So, I left.

I have now been an aged care nurse for nearly 3 years. Revealing my ACC was never an option. I want to be treated as an equal. My roles are caring for the elderly on a day to day basis and kitchen duties. I do not do medications. Why? Simply because I sat to do my online exam and found that after a while, after failing many attempts, I lost hope. My confidence went out the window. The comprehension parts were too cryptic. I still have my job. I have gained strategies to cope, eg: going to work early and starting, setting up, trying to not let my co-worker down. This is almost like an approval thing to me. But it works. I do find however that some nurses take advantage of me, it gets me down. I don’t do confrontation.

My daughter has said that I am very hard on myself. I’m friendly and I treat people how I want to be treated. Sometimes my anxieties get the better of me and I spend the day obsessing about it and crying. As I am right now. This is all too real.

Tomorrow I have an appointment with my GP. I am going to ask about an MRI or CT scan as I want to know more about my brain malformation. As I’ve said, it was my mother who always told me about ACC and due to non-existent technology back then, I need visual proof. I’m good at advocating and relaying medical jargon to some degree and if I’m unsure I research.

I enjoy photography with my Nikon camera, have a good eye for detail when composing a photo shot.

Playing darts is good and I like to score darts. My strategy is to add up in 10’s then subtract to get the number. I know that 3 x 19 is 57 by the time the dart lands on the board. Sometimes I come unstuck but that’s ok. I love driving by myself to Shep’s Mound at Sydney International Airport, near runway 16, on General Holmes Drive, watching the planes. My ultimate dream is to be in the cockpit of a plane on take-off and landing. Reaching 140 kph and rotating. I am just obsessed about flying. It is also my go to place to think and relax. I love cooking with my granddaughters but understanding their homework is beyond me. All I know is 1A + 2A= 3A and that’s it.

In closing. My life has never been an easy one. Strategies have been the key in navigating life. I have a loving husband and my children. My future daughter in law and granddaughters mean the world to me. I made a promise to always support them, no matter what life brings. Even though life has its challenges I will not be defined by my condition. I am a survivor and an advocate.