I have epilepsy.
Damn, but that was hard. I’m not sure I’ve ever said that before. But then, I’m only just getting used to the idea myself.
When the neurologist told me that I was officially epileptic I had to come to terms with fact I had a disability, and unlike all the conditions where they can fix you up, mine had nothing.
No cure. No new brain. No real prognosis.
“So what does that mean?” I asked the quack.
“You might start having lots of seizures or you might never have another one. We don't know. Oh, and you have double the chance of having a massive seizure which will kill you without warning, but it’s only double the miniscule chance of that happening to anyone, so still tiny.
“There’s nothing you can do so I wouldn’t worry about it,” he said.
Then he shrugged.
Of all the things you don’t want to see a doctor do – cry, bite their nails, snap on latex gloves – trust me when I tell you that shrugging is the worst.
Shrugging means the person who studied medicine for years doesn’t know the answer. It means the person who has spent more than a decade fiddling around with brains can’t help yours.
It means you’re on your own, and you might die, and oh f***.
But if I’m honest this wasn’t unexpected, and it wasn’t as bad as it could have been. You see, to be epileptic means you need to have had at least two seizures and this was my second. I sort of knew how it would go.
One in 20 of us will have a single seizure at some point in our lives – febrile seizures as children, or even geriatric seizures.
Children who have it will often grow out of it, and when epilepsy strikes adults it’s usually connected with major life events. Like when children and house moves happen at the same time, and things all pile up.
With me, it was divorce.
My first seizure happened six months after I got my decree absolute. I’d had a year and a half of sleepless nights, terror, financial nightmares and personal misery. After the decree I began to relax. I started to think about my future, sniff the flowers, that sort of thing.
One day I was walking along the river with my parents, felt a little woozy and sat down. I blinked my eyes and when I opened them there was a paramedic in front of me asking me to tell him my name.
Five minutes had passed in which, my parents told me, I’d had a seizure. Foaming mouth, thrashing limbs, the lot. A small crowd had gathered. I had been sitting up and talking for a bit but hadn’t been making sense.
I was put in an ambulance and wired up to machines; my blood pressure was through the roof, and I felt incredibly sleepy. They took me to A&E and ran a lot of tests while I tried to make jokes with my parents, and then a very handsome young doctor told me: “You might have a brain tumour.”
“It’s probably an isolated seizure, it doesn’t sound like a faint, but there’s a small chance it might be a brain tumour so you’ll need to see a neurologist and have a brain scan to get it checked out.”
Mum and dad took me home and, because it was a crisis, we had a cup of tea.
“It’s not a brain tumour,” said mum. “A friend of mine had a brain tumour and she spent six months walking like a crab. Your balance and movement are normal. It’s not a tumour.”
I Googled it and, yes, single seizures are common. They often happen to people who are really stressed. And they’re linked to migraines, which I used to get as a teenager during my exams.
Only – here’s the thing – I always got the migraine AFTER the exams. I dealt with the stress, and when I relaxed there was a sort of backwash that knocked me over.
So it wasn’t epilepsy, it’s just me being dramatic and odd like I always am, and as a bonus I could blame it on my ex! #WINNING.
But we still had to be sure it wasn’t a tumour, so I had my scan and got the all-clear.
No tumours to be seen, although I do seem to be one of the Sand People.
The neurologist who gave me the results shrugged when I asked him what caused it, and said there was one more test that could be done – an electroencephalogram, or EEG, which checks your brainwaves.
Fine, I said. Book me in. Knowledge is power, etc.
An EEG, if anyone ever offers you one, is dozens of wires attached to your skull with conductive wet clay. The wires pick up the electrical patterns in your brain while a light is flashed at you.
That doesn’t sound too bad does it? Until they speed up the flashes to 10 or 20 times a second and you start to feel like Malcolm McDowell pinned to a chair with his eyes forced open in A Clockwork Orange.
A powerful light flashed in your eyes up to 20 times a second for an hour with a nurse saying ‘try not to close your eyes’ is the closest thing to medieval torture I have ever experienced.
It was physically painful, like knives. Tears poured down my cheeks. I left the clinic as exhausted and confused as I had been after the seizure.
A few weeks later the neurologist put on his serious face and said the results had shown a problem. At some frequencies my brain waves had done a funny skip, which meant I was photosensitive.
“Hang on – there were no flashing lights when I had my seizure!” I said. “And I’ve been surrounded by cameras flashing for years, been to nightclubs, never had any problems. This is DAFT.”
I’m not sure I didn’t fold my arms and huff.
The neurologist explained that flashing lights were a basic test, a bit like poking a dog with a stick. If it bites, you don’t know it’s a bad dog or if it’d be fine if you didn’t poke it. You just know the dog doesn’t like being poked with a stick.
“We don’t know what causes seizures,” he said. “But we do know what can trigger them. Alcohol, drugs, overwork, sleeplessness, flashing lights. Just try and avoid all of them.”
I laughed in his face. I’ve never done drugs but as for the rest – I’m a journalist, for heaven’s sake. And this was stress, right? So long as I didn’t get divorced again I’d be fine.
The doctor shrugged, and said: “It might be stress which brought this out – but your brain has always been like this. It’s how you were born. You have a 50:50 chance of it happening again.”
That’s nearly as bad as the shrugging: 50:50 is the same as flipping a coin. Shrug, I dunno, heads or tails. What next doc, trepanning?
Adding to my anger and confusion was the fact that a friend of mine had been killed by this. Raelene was a bright, funny girl who I sat next to in maths, one of the few I’d stayed in touch with when they all went off to uni and I went off to do deathknocks.
Then one day I got a phone call to say she’d died. She’d gone to bed one night and never woken up. The coroner decided she’d had a massive seizure in her sleep, her first ever, and it was so severe it had effectively pulled her plug out at the socket. She was 24.
For weeks I found it hard to sleep, not knowing if it would happen to me too. Gradually I stopped worrying and got on with not being normal.
After a seizure the DVLA like you to hand your driving licence in, and your neurologist likes you to live quietly. I had to abandon my car for a year, and half of the stories I’d otherwise be writing, and as a token health kick decided to replace wine with mixers on a night out.
The upshot of that was I drank a lot of vodka orange, and spent a lot of time in toilet cubicles realising that human stomachs don’t react well to three pints of orange juice an hour.
I also sat down and started writing a book about how my heart got broken, which did more than anything else ever could to fix both it and me.
With every passing year it got further away, a weird one-off. After five years you can forget all about it, the doctors say, and I was five weeks off that hurdle when I had my second seizure.
This time I was in the park walking the dog, standing on concrete, and went down like a sack of spuds. A passing doctor and his wife stayed with me and called an ambulance, put my dog on his lead, but by the time I came round they’d gone and I couldn’t thank them.
I’d lost five minutes of my life again – one minute I’d been walking along, the next I was addressing three paramedics and seeing in the ambulance window that I had blood all over my face.
Back to hospital, back to A&E, this time to have my lip stitched up.
More worried parents, and another chat with the neurologist.
I told him life was fairly stress-free these days as I had left my job and gone freelance, although there had been a few sleepless nights at the start which was, ooh, about 6 months earlier.
“I haven’t even got divorced,” I joked, but the doctor said that every time you have a seizure it makes it easier to have another – they’ve tested it on mice with electricity, and they need lower doses to cause the seizure every time.
Then there was the “you’re twice as likely to die like your mate” conversation and they referred me for cognitive behavioural therapy to make me better at dealing with life events.
It was quicker than writing a book if nowhere near as cathartic, and I did another year without my car. I got a disabled person's railcard, and felt embarrassed about using it.
It meant that when the car needed to be serviced and MOT’d, I had to ring the garage to come and get it. It meant that when I interviewed someone I had to explain I would arrive by train. It meant I had to turn down work if public transport was too impractical.
And every time I did that, I didn’t say why I wasn't driving. I'd just say “medical reasons”, and am fairly certain the person on the end of the phone thought I was a drunk driver.
There is, for some reason, less stigma in that.
Epilepsy is seen as mildly shameful and unmentionable, a bit like bumholes. Yet this is something which already involves 50 million people worldwide, 600,000 people in the UK, and could potentially affect us all, because each of us has a seizure ‘threshold’.
Perhaps yours is three bottles of absinthe, an armful of heroin, or four kicks to the head. I’m luckier than most because I know mine is persistent insomnia, and that can often be fixed with a hot bath, some warm milk and, in extremis, publication.
I’m also luckier than most people with epilepsy, because my problem isn't so bad that I'm on big doses of pills with side effects that can include miscarriages or birth defects.
But the rate of diagnosis is increasing. More of us have seizures now, perhaps because of the pressures of 21st century life. Every single day in the UK, there are 87 people diagnosed with epilepsy and 21 people who die as a result of it.
That's one person every 70 minutes. And those who die are the ones who don't see their doctor, don't take their pills, don't change their lifestyles. People who live in poorer areas with poorer chances. People who do what I did, and pretend the thing they can't see and no-one understands isn't really there.
On top of all that, there are almost 25,000 children in the UK whose epilepsy does not react to the normal drugs. Some have responded well to cannabis oil, and there's a campaign by parents who want to see if it will help the others.
So far, doctors have prescribed it to just one child. ONE, out of a group of children that would fill 125 primary schools. The government changed the law last year to make it possible to prescribe it, but with guidance that's so restrictive you might as well not bother.
Seizures can kill. They can leave you with brain damage. And our government has only pretended to help them.
I've been seizure-free now for almost 6 years.
I’m lucky that both times I had seizures I had people around me. I’m lucky neurologists know as much as they do and can take pictures inside my skull. I’m lucky to know I was born photosensitive like 3 per cent of epileptics are, and that it’s nothing more serious.
I’m lucky it wasn’t a tumour, or a head injury, or an infection like ME that would leave me with more frequent seizures I couldn’t avoid. I'm lucky I can wear sunglasses, avoid nightclubs, forego Jagermeister.
I’m luckier than Raelene; I got a reboot.
But I’m stupid too, because for a long time I didn’t like to talk about it. I worried what people would think. I called myself names like retard, spacker or eppy, especially when I was angry that I couldn’t do something basic like drive to B&Q without asking for help.
I have spent 10 years coming to terms with the fact this thing exists, and I'm still not happy about it. It helps, as always, that I can write things down and show it to others – to spread the word, maybe use it for something good.
I realised that if even I’m in denial, when it’s killed my friend, made me write a book, and scarred my face, then the 95% of people who've never had a seizure won’t have a hope of understanding it.
Today is Purple Day, an event begun to promote awareness of epilepsy, raise money and remove the stigma. So it seems to be a good time to say, I’m not a drunk driver, I've got every right to this railcard, and please let’s do something to stop the shrugging because it really gets on my nerves.
Research has shown up to 18% of untreatable epilepsy could be solved with surgery; that high-fat diets can help children with frequent seizures; and that sleep is vital to help the brain cleanse itself of neurotoxins (who knows, perhaps that’s my trigger).
Epilepsy has no clear cause, and can disappear by itself.
It’s not my ex’s fault. It’s probably genetic, as are the migraines which my dad and nana used to get. My family are under strict instructions to let neurologists have my brain after I’m dead and don’t need it anymore, in case it helps the research.
If someone has a seizure, it is physically impossible for them to swallow their tongue. Don’t put your hand in my mouth, because I’ll bite it. Just cushion my head and let me ride it out.
Get plenty of sleep. Drink, but not too much or too often. Don’t take drugs when you’ve no idea what they’ll do to your wiring. Don’t underestimate stress; it’s a killer.
You only get one brain, so look after it.
Epilepsy shouldn’t cause fear and stigma for any of us, and stopping that starts when we cease pretending that it only happens to other people.
So. This is me. I have epilepsy. I am not afraid, and I am not ashamed.
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