Epilepsy Awareness – Life Anecdotes With David Paul, a Person Supported by Achieve together

Here is epilepsy, the way David knows it.

The Frontal Lobe Effect: “You’re angry for no real reason.”

Epilepsy isn’t always what people imagine. Some seizures don’t look dramatic, but some can feel very emotional.

“Today I had a seizure,” David wrote after being asked if he’d mind sharing his stories around epilepsy. “And following that, with my frontal lobe being funky, I was angry for a few hours.”

So, not angry at anything in particular. Just angry.

“It’s sort of not normal anger. You’re just angry in general, for no real reason.”He jokes that sometimes Achieve together team members “will receive some extremely far‑out emails,” but behind the humour we can learn that emotional regulation can be affected just as much as consciousness or memory.

Cognition difficulties

Like many people with epilepsy, especially frontal lobe epilepsy, David has some cognitive challenges. “To be honest, I’m not up there on cognition myself. I learnt English okay, but Maths I was very poor at. I think it’s the whole prioritising what’s important to keep in the long-term memory bank, and what’s not.”

School Days: “Some people were cool… others were not”

Secondary school could be tough for David. “I couldn’t go into school due to seizures and anxiety. Some people were cool with epilepsy, but others were nasty about it.” But on the bright side, epilepsy also brought connections: “I met most — maybe all — of my friends through having epilepsy. At the epilepsy hospital in Chalfont, I met loads of people you can get on really well with because you can relate.”

“One girl I met, at Chalfont, just her behaviour, arguing with people, throwing plates, I correctly guessed that her epilepsy was based in the frontal lobe. I knew because the behaviour was very similar to mine. Especially the throwing plates. If anything, I was almost sure the epilepsy was based in the same lobe as mine.”

Work Life

At his volunteer job at Oxfam, David had one of his early seizures. “The staff wanted someone to support me, but one of the first days I had a seizure, and they totally missed it!” Other times, he’s had absence seizures at… interesting moments. “Serving customers at Oxfam, paying for a coffee at Nero’s, in the road… (don’t worry, the lights were red.)”

David says his boss, Chris, once tried to calm him after a seizure by debating X-Men: “He tried to debate whether Magneto was a good guy or a bad guy. We never did agree.” For the record, David likes Magneto, but whether he is good or bad is still very much up for debate. He’s a complex anti-villain, after all.

David’s epilepsy can also be the subject of some dark banter at work at times.

“One thing is how at Oxfam, from the beginning, there became this repetitive joke, that if Chris, did anything to surprise me, I would say, for all you know, that could have caused me to have a seizure, fall on my head and die! I’d rather joke about the epilepsy facts, than take them so seriously and draggy.” At his job at Oxfam, David also learned some valuable customer service wisdom: “Because of lack of work experience, I learned from my boss that you can’t just go yelling at customers you feel have been rude to you.”

Seizures, Injuries & A Second Set of Eyebrows

Epilepsy has left its physical marks on David.

“One time I had a seizure and broke my nose. Later I had another seizure, fell forward, and my already broken nose moved the other way. It’s still off centre.” He adds, half joking: “Considering the number of seizures I have where I fall forwards, I’ve got a second set of eyebrows made up of scars.” He has also bitten his tongue “thousands of times” and had dental work “loads of times.”

“The Giant Toilet Roll” & Other Medical Adventures

Regularly receiving medical treatment means that David has a wealth of hospital anecdotes.

David on MRI machines:

“Me, my bro’ and mum used to call an MRI ‘The Giant Toilet Roll’. Because it literally looks like a big toilet roll.”

David on EEGs:

“One of the worst things is hearing the words, ‘We want you to have an EEG.’ If you’ve got hair, you have wires glued to your scalp. Getting the glue out is so difficult. That’s why I shaved my head the first time.”

Oh, and on flashing lights:

“I don’t get this whole ‘Do lights affect you?’ Flashing lights affect only 3% of people with epilepsy. Blow it way out of proportion why don’t you?”

Misunderstandings & Missteps

Frustratingly for David, sometimes the world just doesn’t get it. “At music festivals, when security found my medication, we’d tell them it’s for my epilepsy and they’d hurry us inside — like having medication meant something was wrong.” He adds, reflecting on another time: “Paramedics didn’t even think to look at my medical alert bracelet.”

Confidence, Strength & Growing Up with Epilepsy

Despite the challenges, David says epilepsy also gave him confidence; a kind of resilience forged through difficulty.

“Growing up with epilepsy in my frontal lobe, it comes with what would medically be called ‘challenging behaviour’. For me, I have confidence flowing out. If somebody acts wrong toward me or a friend, I’m cool to confront them about it.”  

Understanding Triggers…

A common question David gets is, “Does heat, stress, excitement cause a seizure for you?”

His answer is this: “These things need to be taken more loosely. For example, being angry doesn’t mean you’re sure to have a seizure. Stress and anger could be part of what’s causing it — not a guarantee.”

Purple Day

David’s experiences are refreshingly candid, and stories like his are exactly what Purple Day is for. Epilepsy is not one thing — it’s countless stories, challenges, misconceptions and fears, it’s about family dynamics, hospital machines shaped like toilet rolls… and maybe the occasional debate about comic book characters.

A big thanks to David for sharing!