For Marlene, the Illawarra has always been home. She spent her childhood in Woonona, and has lived in Dapto for the past 37 years, bringing up her four children. As Marlene says, ‘I have seen a lot of changes in Dapto and the Illawarra in that time.”
Marlene did not have problems with her eyesight until she turned 40 and noticed that her vision had started to become distorted. Shortly afterwards, she was diagnosed with a condition called Benign Essential Blepharospasm, a neurological condition, which causes the eyelids to blink excessively. As the condition progressed, Marlene rapidly lost all her vision as her eyelids closed permanently, refusing to open.
With the sudden onset of blindness, Marlene initially became very depressed. She refers to this period in her life as “my grieving period. A time which prepared me to come to terms with my new life without vision and a time for making decisions. It was during this time that I made a decision to do something with my life. I started to gradually notice that my internal conversations where turning from asking 'why me?' To asking the question, 'why not me?'”
Marlene, with the help of her four children, researched treatment options for Benign Essential Blepharospasm and discovered a new treatment using Botox injections. With the aid of her children, she travelled to St Vincent’s hospital in Sydney every three months for the Botox treatment. Unfortunately the treatments only lasted for two weeks out of every three month period. Marlene’s world oscillated from complete blindness to not being able to close her eyes because of the effects of Botox. Eventually treatments became too much of an emotional rollercoaster and Marlene chose not to continue with the treatments. She has been legally blind ever since.
Marlene gets around her community with the help of her third Seeing Eye dog, Ukari. “The two of us have a very special bond; she is like a child to me. We go everywhere together and make a great team. Ukari has given me the independence and confidence to volunteer and to get out and contribute to my community. Ukari is adorable”.
Even though Marlene has Ukari, she still regularly practices her cane skills because as she says, “I never know when I might need to use my cane. If Ukari gets ill or injured, I still need to be able to get out and about, so I keep my cane skills up-to-date”.
Marlene has been a volunteer at Wollongong City Council for 22 years and believes the experience “has been incredible and is the reason why I keep coming back”.
She's also part of Council’s Living Books
program, an initiative where ‘books’ like Marlene tell their life stories to small groups in libraries, schools and at community events across the region. “People enjoy listening to stories about life experiences very different from their own. We can answer questions about our life experiences and challenges. Sometimes it gets very emotional. The title of my book is An Enlightened Life,” she added.
Marlene has access and mobility issues trying to get out and about in Wollongong, which is why she volunteered for the Keep It Clear! poster campaign. Hazards and obstacles like shopping trolleys and A-frame signs left in her path can be very dangerous for Marlene.
She is a passionate advocate for people who are blind or who have low vision and says; “please don’t leave hazards in our path, they are very dangerous for us. Recognise when a person who is blind or who has low vision needs help and offer your assistance. Some people who are blind won’t except help, but don’t let this stop you offering help. We all have bad days. There is always someone who needs help. Even though I have Ukari to assist me, dogs can’t read signs. I need help finding things in shopping centres and at the supermarket. It can be frustrating for me when I ask for help as people don’t always know how to react or respond to me because I am blind. People just don’t feel confident to ask if they can help. My advice, please approach us and offer your help. Help is wonderful, a great thing”.