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ANDREW BATCHELOR: My epilepsy diagnosis changed my life but I don’t let it define it

photo shows Andrew Batchelor at the Law monument, Dundee, with the city spread out behind him.
Andrew Batchelor is best known as the founder of Dundee Culture, but here he speaks about his epilepsy diagnosis.

Next week marks 30 years since the International Day of People With Disabilities was first proclaimed by the United Nations.

It’s an important day, which aims to promote equality for people with disabilities from all backgrounds.

It’s a subject close to my heart.

For those who may not know, I have disabilities. A fair few of them.

I have cerebral palsy, in the form of hemiplegia, autism, epilepsy, clonus, anxiety disorder, dyslexia and dyscalculia.

And today marks five years exactly since I was diagnosed with epilepsy.

Photo shows the writer Andrew Batchelor next to a quote: "That's what makes epilepsy such a cruel condition. You don't know when it's going to hit. And mixed with my anxiety disorder, that can be terrifying."

The diagnosis came after I had a series of four seizures in a row in November 2017.

I’d already had one in the February of that year.

Both sets are experiences I will never forget.

And I hope they will never happen again.

Seizures led to epilepsy diagnosis

I was in my bedroom during both times.

The first seizure happened as I was setting up a device I’d got for Christmas.

photo shows a younger Andrew Batchelor with laptop, tablet and mobile phone laid out in front of him.
Dundee Culture founder Andrew, shortly before his epilepsy diagnosis.

All of a sudden, my left hand lifted up and I fell off of my bed.

I screamed for help as my ears made an eerie sound.

Then I lost consciousness, thinking I was going to die.

I was rushed to the hospital and taken to A&E.

There, I was talking to someone when suddenly my arm raised again.

The paramedics who had taken me in got to me and managed to prevent another seizure from happening.

photo shows Andrew Batchelor with electrodes measuring brain activity attached to his head.
Andrew receiving a brain activity check after his first seizure.

I thought that episode was a one-off. Until it happened again that November.

This time I was in my room, watching a film, when the exact same thing happened.

This time I knew it was a seizure and I managed to scream: “Mum, seizure!”

When I woke up in the hospital the next afternoon, I was told I had suffered a total of four seizures in a row.

And I had another diagnosis to add to my list – this time, epilepsy.

Epilepsy diagnosis has consequences

It was a shock. At first I couldn’t believe it.

I’ve since learned my epilepsy is linked to my hemiplegia, due to my brain having an abnormal formation.

Photo shows Andrew Batchelor in a hospital bed.
Andrew in hospital after his epilepsy diagnosis.

One in five people born with hemiplegia will have epilepsy.

However, in the five years since – touch wood  –  all been well.

I’ve had no seizures since, thanks to the medication I’m on.

But an epilepsy diagnosis still comes with a cost.

Sometimes I’ll wake up in the night thinking I’m about to go into a seizure. I’ll think my hand is rising and wake up in a panic.

It happened just before the weekend.

Often the feeling passes in a few seconds.

But in the moment it’s really scary and I live with the worry of it happening again.

Condition hasn’t held me back

That’s what makes epilepsy such a cruel condition.

You don’t know when it’s going to hit. And mixed with my anxiety disorder, that can be terrifying.

But it doesn’t stop me from doing what I love, which is promoting Dundee.

photo shows Andrew Batchelor, aged 12, holding an iPad with the Dundee Culture Facebook page open
Andrew was just 12 when he created Dundee Culture to promote the city on social media.

So my message for others like me, ahead of this year’s International Day of People With Disabilities, is that it doesn’t matter how many disabilities you have.

You can achieve all kinds of things, if you put your mind to it.

Don’t let epilepsy, or any other disability, hold you back.

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