I hid my epilepsy for years, but brain surgery released me from misunderstood disease

It’s been 18 years since I stopped waking every morning thinking “when is it going to happen?”

When will my next seizure occur? And how will I hide it this time? I had epilepsy. And I didn’t want anyone to know.

On this Purple Day for epilepsy awareness, I’m proud to keep telling my story in the hope that it helps others who can’t talk about their struggles.

Wally Lewis at the 2024 NRL Hall of Fame and Immortal Induction at the Sydney Cricket Ground last August.Credit: Getty Images

My epilepsy diagnosis was hidden for years through my rugby league career and then through my role as a sports presenter on Nine News in Brisbane. It was easy to hide a seizure on the rugby league field. I would feel it coming on, and I would lie down after a tackle and pretend I had a head knock.

I would have “absence” seizures – I would stare blankly and lose awareness – which could be disguised while I lay down. I didn’t want anyone to know because I thought I’d lose my place in the team. I tried medication that worked for a while but my seizures returned.

It couldn’t be hidden when I had a seizure in front of hundreds of thousands of people as I read the sports bulletin on Channel 9 in Brisbane. That was November 16, 2006.

It was always only a matter of time before a seizure and live bulletin would coincide, but I just kept taking the risk, hoping they wouldn’t. In the media coverage that followed my seizure, I didn’t say I had epilepsy. I pretended I had been feeling unwell. It was a busy time and it all got to me.

Two weeks later, I had another seizure on air. I was running out of excuses. The next day, I told my bosses at Nine about my diagnosis. They could not have been more helpful.

The idea of brain surgery was mentioned because the four drugs I had been taking were not preventing my seizures, which would get worse over time.

Neurosurgery would remove the part of my brain causing the epilepsy. A part the size of a fingernail would be taken out and, if all went well, I wouldn’t have to worry about seizures again.

Lewis celebrates an Ashes win against Great Britain in 1988.Credit: NRL Photos

For me, there was no option. I no longer wanted that feeling of waking and wondering when seizures would strike.

I went to the Austin Hospital in Melbourne in February 2007, under the care of Professors Sam Berkovic and Gavin Fabinyi.

For eight days before the surgery, I was in hospital and hooked up to monitors while seizures were induced so that the medical team could determine whether surgery was worthwhile.

The surgery, on February 22, 2007, was a success, removing a piece five centimetres by 2.5 centimetres – more than that fingernail. If I had been told about that before the surgery, I’m not sure I would have gone ahead.

Lewis playing rugby league in 1991.Credit: NRL Photos

But I’m glad I did because it changed my life. It took months to recover but, a year later, I could drive a car again and not worry about a seizure striking.

Before the surgery, I finally spoke publicly about my epilepsy diagnosis.

The kindness people showed me was truly remarkable. I received hundreds of letters. Some wished me well, others said they also had seizures and didn’t want anyone to know.

Over time, I replied to all those letters. I rang some people because I wanted to thank them for showing kindness when I had always thought I would be ridiculed.

I still receive emails and phone calls from people wanting to know about my experience. I can’t give them advice about treating their epilepsy – that’s for the outstanding medical experts such as Berkovic and Fabinyi.

But I tell them that my experience of talking about epilepsy was just as important to me as the surgery that released me from it.

I’ll keep talking about it, especially on days like today when we have the chance to help others who may be doing it tough.

Wally Lewis represented Australia in 33 rugby league Test matches and played 31 State of Origin matches for Queensland.