When Marella Jenkins met Wally Lewis at Epilepsy Queensland’s annual celebration in late 2018, she didn’t want to let go of him. Marella was one of the people who attended Epilepsy Queensland’s first meeting on 19 February 1969, after she answered a letter to the editor by our Founder Doris Kemp in the Courier Mail.
Marella: “Doris had often said, if only someone who was notable would say they had epilepsy, it would make such a difference.”
Marella firmly believes that we have found that person in Epilepsy Queensland’s Patron Wally Lewis. One of the original aims of the Association was to break down the stigma of epilepsy to end discrimination that left many people with epilepsy socially isolated and struggling to keep stable employment.
50 years on, Marella believes Epilepsy Queensland has come along in leaps and bounds, but the organisation must continue to be there for people with epilepsy when they need support. She also believes that while the community view of epilepsy has improved, we still need to continue to educate.
“There will always be people that are prejudiced and who judge without knowing what is wrong. The more we all talk about it, the more we can change attitudes. When I was younger, I was told by my Doctor not to broadcast the fact that I have epilepsy. That was a common attitude back then.”
Marella was diagnosed with epilepsy at the age of eight. She was at work with her mother who worked in a hotel. Marella describes the feeling when she had her first seizure as going “round and round like a merry-go-round”. Her mother took her to the doctor and Marella was diagnosed immediately with epilepsy. She continued to have regular seizures until she was 10, when her seizures were controlled by medication.
Marella considers herself lucky that she has remained seizure free for so many years. She did have one incident when she was 15 and decided to go off her medication. She was working in an office at the time and had a seizure at work. That was enough for Marella to go straight back on her medication. “I learnt my lesson” Marella said.
Her experience as a committee member and volunteer for Epilepsy Queensland meant that she met many people who had uncontrolled seizures. Epilepsy had such a big impact on their lives, so Marella was pleased she was able to help. “The hardest memories were of those people lost through accidents when having a seizure.” Marella shared
For many years Marella’s role as a committee member was Assistant Secretary, but Marella was also an eager helper when it came to fundraising. She remembers the first stall they ever held. “Everyone made something, jams, cakes, pickles and other handcrafted items and we were so proud that we were able to earn $27. We held regular stalls outside Woolworths Ashgrove and Fay and Don Kranz were always there to lend a hand. Fay would organise all sorts of events including theatre parties at the Arts Theatre. I always felt we brought the fun into fundraising.”
One of the things Marella thought hadn’t changed was how difficult it is to get enough funds to be able to achieve all that is necessary for Queenslanders living with epilepsy.
“The money that has been raised over our history has been hard won, raised from a variety of methods. Most ways of fundraising were tried in the early years, with varying degrees of success.”
When asked about the enormous contribution she made over so many years, Marella in her ever modest way deferred to the contributions of Founder Doris Kemp. “Doris was the association. When she told her son Robert’s Doctor about the Association she had formed, he initially looked at her as if to say “You poor thing”. Later on, after he had seen what the Association was achieving he acknowledged what a good thing she was doing.”
Epilepsy Queensland CEO Helen Whitehead said “The staff and volunteers are honored to carry on the work of Doris, Marella and all of the founding members who worked voluntarily and tirelessly to improve the lives of people living with epilepsy in Queensland. Their vision and commitment is an inspiration.”
Marella’s hope for that next 50 years is for there to be more treatments so everyone with epilepsy won’t have seizures. In the meantime Epilepsy Queensland is there to support people living with epilepsy and their families. As well as work to build awareness and understanding of epilepsy.
At our recent celebration we returned to the tradition of lighting a candle at the beginning of the night. Marella and Fay lit the candle and said these words.
“The candle which is our symbol has been lit – it is up to all members to see that it is not extinguished until the darkness of ignorance and prejudice are completely overcome.”
To share your epilepsy story phone Karen on 1300 852 853 or email firstname.lastname@example.org.