I was embarrassed about Dad’s condition – now I know the truth

Clare O'Reilly

Published March 18, 2025 11:01am Updated March 19, 2025 10:25am

‘STOP. Don’t.’

I was five years old, and my mum Irene’s voice stopped me in my tracks.

What was I doing that was so filled with jeopardy? Running towards my dad, desperate to help him.

My dad, Mick, was having a tonic clonic seizure. I felt helpless and worried, scared he was going to hurt himself.

He was diagnosed with epilepsy before I was born.

He would collapse at home and his seizures were so forceful that his strong, 36-year-old body would take me off my feet if his thrashing limbs connected with my little frame.

I usually stayed with him while he was seizing.

Before I turned 10, I figured out that rubbing his head sometimes ended the seizures early, but I always had to be really careful approaching him as he lay so I didn’t get caught by a limb.

Clare O'Reilly: Living with my dad's epilepsy — I usually stayed with him while he was seizing, says Clare (Picture: Clare O’Reilly)

I don’t remember a time when my dad wasn’t ‘poorly’, as my mum used to frame it. My older brother Michael and I were told his head was unwell and given a booklet aimed at children, about a pebble being thrown into a pond to explain what happened inside his brain when Dad had seizures.

Even now, throwing a pebble into water reminds me of brain waves and neurological disarray.

Widespread acceptance of epilepsy, and the knowledge of this often misunderstood condition, have both come on leaps and bounds over the years.

As a child, however, I found it difficult to talk about it to my friends who couldn’t really understand. And by the time I got to secondary school, I used to feel embarrassed about Dad’s condition.

Why couldn’t my dad be like everyone else’s and drive a company car and be away on business? Why did my dad sometimes have vacant episodes when everyone else’s dad was OK?

For Sarah

Sarah Whiteley was a Metro columnist and much-loved member of the team (Picture: Sarah Whiteley)

Last year, on March 10, we lost our beloved colleague Sarah Whiteley. Sarah was a fantastic journalist; she was Metro’s parenting columnist and a valued member of our first-person and opinion desk.

Sarah died aged 39 from SUDEP - sudden unexpected death in epilepsy. It is thought that every year around 1,000 people die from causes related to epilepsy.

With support from Sarah’s family, Metro is fundraising for two very important charities: SUDEP Action and Epilepsy Action.

From March 10 to March 26, which marks Purple Day (epilepsy awareness day), we will be running a series of features and first-person pieces, raising awareness of epilepsy and SUDEP.

Sarah was so incredible at helping other people share their experiences; she was a born storyteller and we hope to do her proud with this series, while raising money in her memory.

I remember feeling like life was really unfair. I wanted a dad who’d be at the school play or one that could take part in sports day and if he’d had a fit or was poorly he couldn’t.

I remember when he went to a residential epilepsy centre in Buckinghamshire for a week. He was taken off all his medications while there to have his dosages recalibrated and he walked around in a crash helmet in case he had a sudden fall.

Even though I complained sometimes, Dad was my hero as a kid.

He taught me to tie my shoes, tell the time, ride a bike, bake bread, blow on a blade of grass and have it squeal into the distance.

He and I spent every moment together in my childhood, but I had to share him with his unseen condition that would sometimes disrupt our plans for the day.

Bike rides would be cancelled at the last minute; his planned support on the sidelines of a netball match conspicuous in its absence as he slept off another seizure, despite promising he’d come and watch me play.

His epilepsy changed the expected child and parent dynamic between us.

As I grew, my brother and I took on some of the responsibility of keeping Dad safe.

Over the years he took various cocktails of drugs, all designed to reduce the frequency, voracity or after effects of his seizures, but Mum taught us well to make sure he was lying down wherever he was before a seizure happened, and to move anything he could thrash against that might break or hurt.

We grew up accustomed to the vacancy that replaced his usual humour in the minutes before he’d start seizing. Afterwards, he would fall asleep, sometimes for hours, in recovery.

When he woke up, Dad always tried to reassure me. He used to say, ‘You know me, love, I’m indestructible like the Titanic.’ I had no idea the Titanic sank until I was about 11. It was his silly bugger sense of humour and he still says it to me today after a fit.

As I got older, I could take more honesty. He’d tell me a seizure felt like being in the ring with Mike Tyson. His arms and legs would ache after seizures so violent I’d fear he’d never recover.

While the memories of worry and fear from my childhood have diminished over time, so have the strength of Dad’s seizures.

He is now 76 and while they are still as powerful in his brain, his older limbs don’t flail like they used to. He’s spent more than four decades dealing with his condition and he’s tired – like a boxer who’s spent too many hours in the ring.

Epilepsy doesn’t receive the same funding as some other neurological conditions.

Dad has helped the Epilepsy Society for years, jangling a donation tin endlessly on Saturdays in our local town centre and I ran the 2018 London Marathon for the charity, stopping only to hug Dad who came to watch.

When I saw him at mile 24, there were tears in both our eyes.

There is no cure, and epilepsy can be fatal, though it usually isn’t. And while it takes the shine off special days or family events, many with it – like my dad – live alongside it.

A cure wouldn’t make a difference to my father’s remaining years but it would mean that kids would get their mums and dads back at full capacity.

To me, a cure would be bittersweet. I’d love one for all the kids who live with a parent with epilepsy like I did, but it’s too late for my dad.

There’s no doubt that my life would be different if Dad had been well: Dad would have worked rather than being told, at 32, that he had to give up his fledgling hairdressing business.

We’d have had more money for family holidays and birthday presents…

But I wonder whether I could blow on a blade of grass, or make plaited bread?

While I thought I wanted a ‘corporate dad’, if he’d worked, I wouldn’t have any of the incredible memories I have with him. He’d have been too busy to build tents in the garden.

He’d have been home late, and gone early in the morning, not there to put empty milk bottles of hot water into my welly boots on cold snowy days. Because he couldn’t work, I got so much more of him.