Natalie Stokes

Make March Purple for the Epilepsy Foundation

Every 33 minutes, someone's life is turned upside down by epilepsy.

My Story

Seventeen years ago, I was tying my shoelaces before school just like any morning — Year 10. Suddenly, I felt strange. A weird de ja vu kind of feeling. What I didn't know was that it was a focal seizure. I kept having this, what I called "my de ja vu feeling" for years, every few months, until my last year of uni it started 8 times a day. That's when I really pinpoint the feeling of my life turning upside down. In the emergency room, midnight, sitting next to my dad, bawling my eyes out. 

I'd just spoken to a neurologist for the first time. You have epilepsy. You start medication now. You've lost your driver's licence for 6 months. The last bit is actually what punched me the most. A fiercely independent young uni student - driving to Wollongong uni, driving for a surf, driving to see my mates in the southern suburbs of Sydney which lack public transport, driving to see my uni-bf in far outskirts of the Shire (often joked as not even the Shire). I was a camper, an explorer, a spontaneous beach-hike-adventure girl, with an 'up and go' mentality.

The next morning I would wake up a different person.

And the most important thing I had to remember was never forget to take your medications, on time, morning and night. Set an alarm. And, every seizure is causing damage to your brain.

It felt like an out of body experience. Everyone else's life went on around me. They woke up and had cereal that day, like any other day. But my world had been flipped on its head. The logistics and structure of my life had now changed, and I had so many scans booked in. Little did I know what a lab rat I would be by age 33. 

Since 21, I've had multiple week long visits to the hospital where they have taken me off medication to induce seizures and film them (a video EEG - VEEG), endless MRIs, CT scans, PET scans, functional MRIs (you do activities during the MRI), week long sleep deprived EEGs in the hospital, ambulatory EEGs I have to wear for days at home, a double-blind drug trial that I prayed would work and didn't....and SO...!

Fast forward 17 years... In 2024, I underwent brain surgery—a right anterior temporal lobectomy with amygdala hippocampectomy (it just rolls off the tongue, right?)—to knock seizures on the head. Pun absolutely intended!

How does epilepsy affect me?
Other than seizures. I mean, they bloody suck - because I can lose awareness for up to 30 minutes, I make involuntary purposeless movements with parts of my body mouth/arms/legs, my memory is often wiped of before, during and after the seizure, I can't communicate or mumble meaningless words, cross roads, I sometimes fall asleep and pretty rarely have full-body movement seizures...

Well, the impact is fear, embarrassment, anxiety of having a seizure and constant vigilance about living a life that won't trigger a seizure...(heaps of sleep, quality sleep, strict medication times twice a day, limiting stress, cancelling plans if I feel like a need a rest because if I push it I might trigger a seizure, no alcohol, blood sugar, on and on).
AND loss of independence. Losing your driver's licence, being unable to swim alone etc etc. 

With all of that - I just said, "Take that bit of the brain out - I don't want it :-) ". Still on the recovery journey.

Alright. What is Epilepsy?

Epilepsy is a neurological disorder characterised by recurrent seizures due to abnormal electrical activity—an "electrical storm"—in the brain. Seizures vary in type and intensity, from staying aware, brief lapses in awareness, loss of awareness, jerking, to full-body movements.

My Mission

This March, I'm on a mission to improve the lives of the 270,000 Australians living with epilepsy. I know firsthand the challenges this condition brings. By participating in Make March Purple, I’m not just raising funds for the Epilepsy Foundation—I’m spreading awareness, igniting hope, reducing stigma, and making a real difference.

Conditions like MND and Parkinson’s are well-known and receive significant funding (think Ice Bucket Challenge), but epilepsy often doesn’t get the same attention—despite affecting more Australians than MND, Parkinson’s, MS and cerebral palsy combined. Greater awareness and funding to organisations like the Epilepsy Foundation means funding of critical research for a cure, education, training, support services and hope for those living with epilepsy.

All purple champs need their Sidekicks!

This March I will seize a shade of purple every day in my outfit or accessories.
So, please show your support to the Epilepsy Foundation by donating to my page. Donations are tax deductible. Every contribution, no matter the size (I'll call it "coffee for a cause" 🙂 My strong almond capp in the CBD is about $6.50, and if you're a multiple coffee drinker then....😉), helps create a brighter future for those with epilepsy.

Let's lift the lid on epilepsy, start a conversation, and shed a purple light on this condition. Because epilepsy is all too common. 

Thank you for standing with me!