A life interrupted: living with epilepsy

It was just meant to be like any other trip to Sin City; careless bets, hollow pockets and round-the-clock hedonism. Yet for Tom Ryan-Elliott, it was a trip that would radically change the course of his life. One night, upon leaving a party in Las Vegas, Tom fell down a flight of steps – all 51 of them – and cracked the left front part of his skull. After being in a coma for a couple of months, Tom was moved to a hospital back in London. It was a slow and bittersweet recovery, as he learnt that he had developed both epilepsy and aphasia (the impairment of language, affecting speech and the ability to read or write).

Tom is one of the 600,000 people in the UK living with epilepsy day-to-day. Worldwide, it affects around 65 million people, which equates to nearly 1 in every 100 people. It is also a condition that unites the likes of Julius Caesar, Sir Elton John, Van Gogh and Prince. But what exactly is epilepsy and what is it like to live a life with it?

According to the NHS, epilepsy is a “common condition that affects the brain and causes frequent seizures. Seizures are bursts of electrical activity in the brain that temporarily affect how it works.” Seizures can cause a wide range of symptoms and take place in many different forms, whether it’s a blank stare, muscle spasm, uncontrolled movement, loss of awareness, “pins and needle” sensations, or a convulsion (uncontrolled shaking).

Neurologically speaking, the form a seizure takes is determined by where in the brain the abnormal nerve cells are located. The brain is comprised of billions of nerve cells, or neurons, that communicate through electrical and chemical signals. Once there is a sudden electrical discharge that disrupts the nerve cells’ regular activity, a seizure can occur.

Contrary to the popular belief that epileptic fits are solely convulsive, there are over

40 different types of seizure, and what they look or feel like can vary. Take Tom, for example; he experiences mainly “partial (focal) seizures”, which happen when unusual electric activity affects a small area of the brain, but it does not affect awareness. “Around every six months, I have a focal seizure which means I can’t really talk; I twitch a bit, but, after around one to two minutes, I go back to normal.” On rarer occasions, Tom experiences what is known as a “tonic-clonic seizure”, otherwise known as a “convulsive” seizure, which begins on both sides of the brain, can spread to the whole, at which point the person loses consciousness, muscles stiffen, and they can jerk. “I last had a tonic-clonic seizure back in November at a Japanese restaurant in London, but I had a feeling it was coming on, so I calmed myself down and made sure I was away from injury.” Like Tom, many of those with epilepsy experience what is known as an aura, a term used to describe the warning people feel before they have a tonic-clonic seizure. 

Not all of those with epilepsy get a prior warning, however. Tina Thompson, 53, was diagnosed with temporal lobe epilepsy at the age of 22. Due to the severity of her fits (Tina also has hereditary spastic paraplegia), she has frequently found herself in high-risk situations: “I don’t get an ‘aura’ or a warning, I can be in the middle of doing anything. One time, I was getting soup out the microwave, and the next thing I knew, I had boiling soup all over me.” She adds: “Another time, I was with my carer in the swimming pool and had a fit. The lifeguard had to save us both from drowning as I had taken the carer down with me into the water.” Her most recent tonic-clonic seizure was in lockdown, which lasted an atypical 46 minutes (the average seizure lasts one to three minutes).

Tina also experiences what is known as an “absent seizure” which looks as if she is daydreaming for around a minute or so. She can sometimes go months without a severe tonic-clonic seizure but then may have three or four in a matter of days. These are otherwise known as “cluster seizures”, a group of seizures which happen more often than you’re used to.  

Over the years, Tina has found it challenging to describe to doctors the severity of her invisible condition and so got the hospital to record her having an attack in bed: “I was in a bed that had protective metal sides, and even still I banged my head on it. I then continued and would bang my head on the other side. No one can stop you when you’re having a seizure because you’re shaking so much, and you’re very violent. Afterwards, you don’t remember a thing; you’re exhausted and need a lot of oxygen”, Tina tells me. 

Some of the devastating experiences Tina has had in her life – from the premature death of her two new-born children to her life-changing epilepsy – are beyond comprehension. In spite of this, Tina remains fervently optimistic and finds great consolation in art and poetry. “I’m in another world with my art and poetry; it has built my confidence up”, she says.

Art is a great means of escapism for many suffering from epilepsy, where the paintbrush serves as a powerful communication tool for those who often don’t have the words. Tina counts herself incredibly lucky to be able to use both pen and paintbrush as a means of dealing with the tidal wave of feelings that have come with a life of trauma and confusion. 

Here is one of Tina’s poems, titled ‘Understand’:

No-one gives a toss,

About my memory loss,

The frustrations I feel, the self-defence,

My feelings and self-confidence,

How hard it is to know my limits,

Take medication to stop my fits,

Go to bed early, find some patience for myself,

To convince you I’m not inferior to everyone else.

I’m still the same person, don’t take over and patronise me,

My reactions and movements are slow,

I get confused, but please let me be me.

As reflected in Tina’s poem, she and many others with epilepsy, are frustrated with being “othered” by society. “Epileptic people can still have a full life, you don’t need to let it win, and I won’t.”

The lack of public awareness surrounding the condition leaves many feeling stigmatised by society, resulting in lower self-esteem, higher social anxiety and general malaise. Emma Griffiths, 32, was first diagnosed with epilepsy in her late teens after a severe tonic-clonic seizure on a beach in Australia. She has now been seizure-free for three years but says she still struggles psychologically and mentally. “Epilepsy has definitely affected my mental health. It can make you feel isolated,” she says.

Since her diagnosis in 2007, she has also experienced workplace discrimination. “Having worked in the NHS, I’ve been in situations where I have clashed with managers over them not understanding epilepsy”, Emma says. “For example, one time I had a seizure on the floor where I had bitten a hole through my tongue. My manager called me up the next day, not to ask how I was, but to ask why I wasn’t at work.” 

She adds: “It’s frustrating when people don’t understand what epilepsy is. I can count the number of times on both hands that people – employers to ex-friends – have called me a ‘spastic’ just for being epileptic. People need to educate themselves and become more informed; understanding is the most important thing.”

Tom also finds himself exasperated by the public ignorance surrounding epilepsy and seizures: “Because it’s an invisible condition, no one has any idea what to do when you start having a fit,” Tom explains. “I’ve had it many times where people stand around you and stare; some even think you’re drunk! You have the odd person who phones the ambulance, but mostly, people are scared.”

“I do understand people’s fear; especially after seeing footage of myself having a seizure, it was all very surreal”, Tina says. “But epilepsy is a hidden condition that the world needs to understand. There is still a stigma because people are afraid of the unknown. We have come a long way from the stigma of decades ago where I would have probably been put in an institution – but there is still lots of progress to make.”

Instead of fearing the invisible, we could all benefit from education on a condition that affects so many people. Even knowing a bit of epilepsy first-aid will help to normalise the disorder. For example, if you think someone is having a focal seizure: reassure them, speak gently, do not restrain them and guide them away from danger. If you think someone is having a tonic-clonic seizure: move the person away from danger, away from objects, put something soft under their heat, do not restrain them, do not put anything in the mouth – allow the seizure to happen. If the seizures do not stop by themselves and if this goes on for more than five minutes, they may need urgent medical help, and an ambulance should be called. 

Listening to stories like Tom’s, Tina’s and Emma’s is imperative to understanding what a life living with epilepsy is like. As with many disabilities, living with a life-altering condition can leave many feeling stigmatised and ostracised by the wider public. Purple Day is a great opportunity to fight this stigma and educate ourselves so that myths and fears surrounding epilepsy can be dispelled. “If you can, please embrace a bit of purple today”, Emma urges. “Whether it’s a piece of clothing or an accessory, it symbolises you understand.” 

You can find more information about epilepsy, the various types of seizures and how to deal with them here.