Wally Lewis: “I kept my epilepsy in a dark corner of my life hidden from view. That was until I couldn’t hide any more.”
The crushing denial about the epilepsy raging in his head for two decades turned Wally Lewis’ private life into one laced with anxiety and fear. Here, The King of Rugby League shares with Grey Matters how one of the most fear-inducing moments in his career forced him on the pathway to recovery.
It’s been 11 years, 3 months and 2 days (but who’s counting?) since I had the brain surgery that changed my life.
I often think of the two decades before that time with exasperation. Despite my career on the footy field and in the media, it felt like I was living my life in neutral. My epilepsy would bring on seizures with very little warning, and there was a fear that raged in my mind about what would happen to my career if people found out.
So apart from my nearest and dearest, and just a couple of good mates, I kept my epilepsy in a dark corner of my life hidden from view.
That was until I couldn’t hide any more.
That chilling tingling feeling crept through my head – the painfully brief warning sign that a seizure was about to hit.
That particular day – looking down the barrel of a camera in front of millions of people – it put my mostly well-kept secret firmly into the public’s gaze.
When I think about that moment, it was easily one of the most fear-inducing and embarrassing moments in my life. But in truth it put me in the exact place I needed to be – it shook me out of denial about my condition and forced me to seek help.
The people at Channel 9 at the time – in particular my boss Andrew Slack and newsroom boss Lee Andersen – could not have been more supportive.
I remember Lee saying the door was open for me when I was ready to come back, but that now was the time to get help, and take every second you need to get better.
‘Sick and tired of being sick and tired’
“There are 57 forms of epilepsy,” a doctor mate of mine told me at the time. I was absolutely gobsmacked.
He told me to get to Melbourne and see Professor Sam Berkovic, one of the top minds in epilepsy in the world. I sat with Sam listening to my options and one thing kept running through my head: I was so bloody sick and tired of being sick and tired. As soon as Sam brought up the option of surgery, I was in.
I was enormously uncomfortable about it but I’d also been hiding this for decades, and I was at the point where I just didn’t care anymore. Sam had told me the wait list for surgery could be seven to nine months but just a few days later he called and said there’d been a cancellation. I was still in Melbourne and, all of a sudden, I was straight into surgery.
I’ve spoken about my recovery at length, written a book about it. There were extremely dark times, some mind-numbingly boring times being confined at home, and a lot of small and big triumphs along the way.
But the reason I’m writing this for Grey Matters is to say this – you don’t need to hide, be embarrassed or go it alone when it comes to your wellbeing or your health.
It sounds hypocritical, I know.
I’ve been involved in and loved team sports my entire life – both in footy and in the media. But after decades of living in the shadows with my condition, I went it alone and achieved nothing.
My family’s support was enormous. I cannot tell you how much Jacqui and my family were vital for my recovery. But it really does start with you.
Educate yourself and seek out the options available to you. Whatever you do, don’t live in denial that it will go away. I can tell you from first-hand experience that once you accept the fact you need help, there is support available.
The other thing I’d say is when you do seek help, find a way to take the time you need to recover properly, and look after yourself properly during that time. For me, rest was vital. Hearing good news from doctors was good but don’t get ahead of yourself and derail your recovery.
About nine months after my surgery I walked back through the doors at Channel 9. But only for half a day. Then it was two half-days. Then three, and so on until I was truly back among the action. Those small steps – easing back into it – has made these the best days of my media career.
Never be afraid to ask for help – friends, family and your medical people are there to support you.
I’m living proof of that. Eleven years, 3 months and 2 days of living proof.