Epilepsy is more common than Parkinson’s Disease, Cerebral Palsy, MS, and Muscular Dystrophy combined, but it is still widely misunderstood. Epilepsy can take many forms and affect people differently.

Epilepsy Action Australia is one organisation that is helping to spread the word on the disease by educating people. They use many different methods, but one is by appointing ambassadors to help raise awareness.

Logan now has its own ambassador who continues to battle the disease, although it doesn’t stop her from working for the community.

Cr Mindy Russell was elected in March 2020 to represent division three for the City of Logan and it wasn’t long before life changed. This is her story.

I was in my early twenties when I had my first seizure. I woke up feeling very unwell, and when I went to tell someone that something was wrong, I discovered that I couldn’t speak. My next awareness was waking up in hospital.

An MRI revealed that I had a large but benign tumour on the left side of my brain. I was told it was operable, but not worth the risks at that stage as a parent of a pre-schooler. Focused on my uni studies, I started taking medication and went back to my usual life. It didn’t bother me much for the next 14 years.

A few weeks after being elected to council, I came home late after far too many meetings and far too many coffees. I suddenly felt unwell and had to lie down. Again, I woke in hospital struggling to speak, this time with a badly broken shoulder. The recovery from my shoulder surgery was excruciating and long. I returned to work swiftly though, full of metal, and determined to catch up on anything I’d missed.

Further seizures made life challenging. Some put me in hospital, some made it difficult to speak or concentrate, some caused intense anxiety and exhaustion. I was so upset that it was slowing me down at my dream job as a councillor, but I refused to stop. The mayor, other councillors, council’s staff, and members of my community were very supportive.

A couple of years ago, I was encouraged to have the surgery. I was awake through the whole operation, as the surgeons needed to make sure they didn’t permanently damage my speech. I joked that people would probably prefer politicians who spoke a little less, anyway.

The doctors weren’t pleased by how quickly I returned to work, but I explained that councillors don’t get sick leave. I felt that I owed my dedication to the community who’d entrusted me with huge responsibility. Looking back, I believe that pushing myself helped me to recover faster.

For almost my entire term as a councillor, I have been unable to drive a car. In Queensland, it is illegal to drive within twelve months of any kind of seizure, or even a suspected seizure. This has made me very resourceful about getting around Division 3, to make sure I’m not restricted from connecting with residents. I’ve developed great friendships with a lot of local Uber drivers, who are an excellent source of information about roads issues.

I’ve worked out an (almost) perfect balance of medication and lifestyle choices that keep me on my feet. I’ve learned that I can’t stay up too late, and I can’t drink much wine or any coffee. It’s a shame, but worth feeling well and getting to drive again soon.

I want the community to know that epilepsy is a very diverse neurological condition. It can affect people and their families in all different ways: emotionally, socially, economically, and physically. Epilepsy has many different causes, and seizures can have a countless range of triggers. Unlike for me, the cause of some people’s epilepsy is never identified.

Seizures can also look very different, and when they aren’t recognised, they are often ignored, managed inappropriately, or the person treated poorly if they appear drug affected.

I also want people with epilepsy to know that there is support and information easily accessible. Knowledge is power, and there is a lot of material available to help them navigate life with this complex condition, eliminate avoidable risks, and live their best possible lives.

The reason I decided to accept the ambassadorship with Epilepsy Action Australia was because I hope to play a part in challenging assumptions and changing perceptions.

There are a lot of amazing people who have put their hands up to support the organisation and speak up for people with epilepsy. However, I never hear of politicians doing their jobs while dealing with seizures in their lives. This doesn’t necessarily mean that they aren’t out there, but it is a disorder with a certain stigma.

With genuine intentions, I’ve been encouraged by some to keep my condition private, as it could negatively impact some residents’ confidence in my capacity as their councillor. I’d like to be part of addressing and overcoming that.

It is estimated that epilepsy impacts more than 250,000 children, young people, and adults in Australia, and is the most common serious brain disorder in the world.

Epilepsy Action Australia has delivered important services to Australians for 72 years. They can be reached through the National Epilepsy Line on 1300 374 537, or through the website: epilepsy.org.au.