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Why did my ‘moments’ hold me back..?
Lydia Williams, 21, Cardiff
Buckling my seatbelt and starting the engine, my stomach flipped.
‘This doesn’t feel safe,’ I muttered.
Aged 17 and on my fourth driving lesson, I realised in that moment I had to quit.
Like most teens, I was finding it scary being on the roads for the first time.
But it wasn’t other drivers I was scared of, it was me.
I worried all the time about having a ‘Lydia moment’.
For as long as I could remember, I’d been different.
Distracted, unfocused…a bit of a daydreamer.
These were just some of the words teachers used to describe me throughout my childhood.
But according to the doctors, there was nothing wrong with me.
I was just one of those kids, they said, always off in a world of my own.
But then I started falling behind at school.
I was put in the special educational needs classes,
hoping it would suit me better. It didn’t help. ‘I don’t understand,’ I’d say frustrated, pushing my homework away.
‘Come on, just focus,’ my mum Suzanne, 50, would soothe.
She meant well, but it hurt. I was already doing my best.
None of my friends had these problems. None of them zoned out randomly for 30 seconds.
Over the years, I lost count of the times my pals said, ‘You had another one of your moments there, didn’t you?’
‘Oh, not again!’ I’d laugh, ‘Sorry, what did you say?’
But I worked hard in spite of it and left school with 11 GCSES.
It made me feel I could do anything.
But by May 2014, driving lessons filled me with dread.
What if I had a Lydia moment behind the wheel? It was too risky, so I quit. I finished my A levels, headed off to Swansea University in September 2015 to study Business Management and Marketing.
Not bad for a daydreamer.
Of course, my ‘moments’ still happened. And by my third year, I really needed to concentrate on my final project and exams. So in September 2017 I visited my GP for help. Only he said not to worry. I wouldn’t give up and went back for a second opinion with a new doctor a few months later. ‘I zone out randomly,’ I said. ‘I don’t know why or how this happens, it just does.’ ‘I’ll refer you,’ she said. In March 2018, I went to University Hospital Wales for an EEG – a study of the electrical waves of the brain. Afterwards, my consultant neurosurgeon had news. ‘You have epilepsy,’ he said. ‘Are you joking? I replied. He explained that I was suffering ‘absence seizures’. I didn’t have the commonly recognised fits people usually associate with the condition.
But my blank stares were actually my brain shutting down, due to the same surge of electrical activity.
I’d never heard of it but, reading up on it later, I realised absence seizures are among the most misunderstood type.
They can go unnoticed and undiagnosed for years, despite usually starting in childhood, just like mine had. Suddenly, all of my struggles made sense.
There isn’t a cure, only daily medication to help control the attacks. But now I know what I’m dealing with, I’ve noticed a pattern. Triggers, such as anxiety, can set off my seizures.
It’s frustrating that it’s taken so long to get answers but, in one sense, I feel lucky.
Some people are likely to be suffering this type of epilepsy, feeling its impact in every aspect of their lives, and don’t know it.
That’s why I’m working with the Young Epilepsy charity.
It hopes to educate people about all types of epilepsy, including absence seizures.
Sharing my story will at least highlight the symptoms that people should look out for.
Those symptoms might be nothing – but they could just as easily be epilepsy.
I’d always been different. Distracted. Unfocused