Darlene was born in Melbourne the third child in her family and grew up in West Footscray after a brief stint in Warburton. She has memories of walking to school on her own and having a happy and fun if sometimes mischievous childhood, and got on well with her siblings and her extended family. She also remembers getting glasses in Grade 3 – ‘they were pink and like Dame Edna’s!’
She was a bit of a tomboy growing up – she swapped her pig tale ties for marbles in the school yard, but still had a love of stuffed toys. She particularly loved the smurfs and had a ‘whole village of them’. She had close friends at school who lived down the road from her house.
Darlene was always interested in art and doing things with her hands. She kept scrapbooks, cutting things out that she liked and pasting them in, sketching and colouring in and craft activities. She especially liked making ‘stained glass flowers’ using wire frames, firing the glass in the oven.
Darlene went to High school in Braybrook with her older brother and sister. She liked it, but it was at high school at the age of 14 that symptoms of her Touretts syndrome emerged and this had a very negative impact on her life.
Touretts syndrome involves chemical reactions in the brain that cause involuntary behavioural issues like swearing, repeating phrases, twitches and tics, similar to obsessive compulsive disorder. In the early stages, it was not diagnosed as it was not widely known about and she received anti-psychotic drugs in different hospitals in Melbourne. She still remembers sitting in the office with her mum and being told she had ‘Gillies de la Touretts syndrome’ and being scared that it might be a terminal illness. She was picked on at school and doesn’t remember much of that time because of the disruption that the drug regime and the illness caused. The drugs led to her gaining weight. Later on she lost an eye from an assault in 1996.
Darlene says she’s now ‘learned to live with Touretts’, (she nicknames it ‘Terry’) and sees it as an inconvenience more than a disability. She lives day by day, and manages Terry by removing herself from stressful environments and sticking to the familiar spots in her local neighbourhood where she is known. Being accepted is important: ‘some people are frightened of the way she is… a lot of people don’t know how to react… people need to give me a go’. Laughing at Terry is also good: ‘ he can be very funny sometimes!’
Darlene doesn’t go to church partly because of the embarrassment about her illness, but she believes in God and prays to him. She sometimes gets down about her illness and sometimes friends have turned their backs on her but is grateful for the support she has had from her carer Rick who lives with her in a two bedroom public housing house in Flemington and is her closest friend. ‘I can talk to him about anything and everything’.