Purple Day

Briana’s mother, Debbie, has had epilepsy since she was a young child. Drawing on the approach of Epilepsy Awareness Day on 26 March, Briana shares her story.

Barely ten years old and beginning the fifth grade, Debbie was already dreading the start of term. The usual trials and tribulations of the primary school world make anxiety bubble in her stomach and the constant teasing about the baby fat she still carried made her shy and self-conscious. The year continued as had every other, with pursuits like playing in the school band and avoiding PE dominating her thoughts.

One evening, Debbie wandered down the hallway toward the bathroom. As she pushed the toilet door open, she began to feel static, electrical noise filling her head. She was suddenly dizzy and felt as if her brain was slowly shutting itself down. No one would know it at the time, but Debbie was having her first seizure. Debbie fell, and her fingers became jammed in the door. The sharp, sudden pain brought her out of the seizure, and she went running to her parents’ bedroom. Her Dad called her dramatic, her Mother kissed her fingers and sent her back to bed.

Weeks later, Debbie playfully ran towards her sister, Tracy, who was sitting on their parents’ bed. While bounding across the carpet, the static filled her head once again, and she fell to the ground. Tracy began to laugh uncontrollably, thinking she’d tried to jump onto the bed and missed. When her sister didn’t get up, she called for help. This was Debbie’s second seizure, and the beginning of almost a decade of neurologist visits, medication, suffering and stigma. The neurologists performed an EEG scan, which revealed scarred brain tissue on her right temporal lobe. She was diagnosed with epilepsy and told she’d been having absent seizures, also known as ‘Petit Mal’. This kind of seizure is brief, usually lasting about fifteen seconds. This meant that much of the time, symptoms were not noticeable, even to Debbie herself. She kept wondering why the doctors hadn’t given her a tablet that cured her yet.

At school, people began to take notice of her seizures. Other children started to avoid her entirely, worried that they would ‘catch what she had’. They treated her like a freak. They would frequently ask if she swallowed her tongue when she seized and would talk about shoving a ruler in her mouth to ‘save her’. These same children would get awards at the school assembly if they dared to stay with her through a seizure, while Debbie was pushed further into isolation by the branding as the ‘weird, sick kid’. She found her seizures mortifying, and came out of them in a dazed, confused state and began to cry.

Two years passed, and Debbie started high school. Neurologists gave her medication which carried side effects that were worse than the seizures themselves. She couldn’t keep her eyes open, let alone concentrate. She had constant migraines, and the seizures hadn’t stopped. This wasn’t a life; it was an existence and a miserable one at that. Even worse than what other children put her through, was what her teachers did. Despite knowing about her epilepsy, they didn’t understand it. They would say that she didn’t listen in class, and would never amount to anything in her life. They would fight her parents, demanding that she did the cross-country run because she ‘definitely wouldn’t seize’. Debbie’s confidence was shattered. She had no faith in herself and lived in constant confusion as the seizures and medication took their toll. Wanting to do things that every other kid could do, she decided to go on school camp. When the parents of other children discovered this, they formed a petition to block Debbie from going. They were worried their kids would ‘catch’ epilepsy, and didn’t want their children in the same vicinity as this ‘freak’. Debbie went to school camp anyway.

Eventually, neurologists found a medication that worked for Debbie. It didn’t make her sick, and it stopped her seizures. At 19, she was weaned off it, and all symptoms of epilepsy had ceased. At 30, she had an EEG which showed no trace of scarring; the neurologists believe that her brain had healed itself. Debbie was finally able to remove the flag on her license that stated she had epilepsy. Now, at age 43, she is a successful, professional and exceptionally impressive woman. She also happens to be my mum.

My mum agreed to allow me to tell her story for Epilepsy Awareness Day, also known as Purple Day. This day of awareness, on 26 March , was founded in 2008 by a nine-year-old with a scarily similar experience to Debbie’s. I say scarily because the same stigmas exist today that did in the 1980s. People with epilepsy are still isolated and misunderstood, and research into the condition receives little funding.

Something that my mum conveyed to me was that she wanted to send strength and love to those living with epilepsy today. She wants them to know that they are not defined by it, and shouldn’t let it stop them from achieving their goals. She says that they don’t need to be embarrassed or feel like less of a person because living with this condition just proves their strength.

This Epilepsy Awareness Day, be part of the conversation. Listen, and make an effort to understand. Help us stop the stigma.

We acknowledge the Ngunnawal and Ngambri people, who are the Traditional Custodians of the land on which Woroni, Woroni Radio and Woroni TV are created, edited, published, printed and distributed. We pay our respects to Elders past and present. We acknowledge that the name Woroni was taken from the Wadi Wadi Nation without permission, and we are striving to do better for future reconciliation.