Barry J Whyte: How I learned to live with epilepsy

In 2016, I was diagnosed with epilepsy, making me one of the 40,000 people in Ireland who suffer from the condition. As I discovered, it can be hard to share the burden of something that defies adequate description

Barry J Whyte

Chief Feature Writer @whytebarry
7th February, 2021
Barry J Whyte: How I learned to live with epilepsy
Gareth O’Neill: ‘Epilepsy is nothing to be ashamed of, nothing to be embarrassed about.’ Picture: Bryan Meade

On May 4, 2016, I took a selfie. The picture, a product of boredom rather than self-absorption, was taken on the second day of my stay in the epilepsy monitoring unit at Beaumont Hospital in Dublin.

The picture is a headshot, in which I am wearing striped blue and white pyjamas. My hair is cropped short and across my head is a tangle of wires of red, yellow, blue, green and white, each of which has a small metallic electrode at its end.

The electrodes are fixed to my head with a white glue-like substance – two at my temples, three across the top of my forehead, running along the hairline, and more dotted across the top of my skull. The wires all run back to a kind of electronic ponytail, wrapped in electrical tape, and plugged into a small electrical box that hung around my neck on a strap, like a particularly ugly handbag. The expression on my face is morose: after two days, I was quite, quite bored.

The idea of the epilepsy monitoring unit is to deprive you of sleep in order to bring about the kind of brain activity that triggers a seizure.

Occasionally, the doctors would come through on their rounds, and I would be told to stare at a screen over the bed and told to hyperventilate while bright images flashed and bloomed and swirled on the screen, all in an effort to trigger a seizure.

The wires and electrodes on top of my head were to capture the activity inside my head, and a camera above my bed captured the activity from the outside.

For most of the time, that camera will have caught nothing particularly interesting: me reading The Power Broker; me getting tired of holding The Power Broker, and stopping; me asking the nurses for permission to be detached from the wires so I could go to the bathroom; me nibbling on whatever food came by; me drinking as much coffee as I could stomach; and me staring out the window, waiting.

I had no way of contacting the outside world, since my phone was turned off and stored in a locker to prevent interference from its signals. In those pre-pandemic times, I hadn’t realised that spending days on end in a single spot, with the limits of your world severely prescribed to a few square feet, could be quite mentally trying.

On May 9, I took another picture. My expression is even more morose and there are dark rings under my eyes. I’ve also got two sticking plasters on my cheek, marking the spot where sphenoidal electrons have been inserted at the point of a needle to a place under my sinuses to get a better picture of what was happening inside my brain.

The following day, nearly a week after I entered, it happened. While staring at the screen and hyperventilating, I began to sense a familiar feeling. We had been told to call out if we got any inkling we were about to have a seizure, but it came so quickly that I didn’t get a chance.

According to what my wardmates would later tell me, the alarms signalling a seizure rang out above my bed, and my arm jerked directly upwards. It did so with such force that it wrenched my shoulder out of its socket, though of course I didn’t know it at the time.

I woke up to find myself being tended to by a team of doctors and nurses. My memory of the next day or so is extremely fuzzy, but I know that I had a few more seizures through the night, which resulted in the dislocation of the other shoulder.

I remember being frustrated at the pain and discomfort, but also being relieved. My neurologist, Ronan Kilbride, now had all the data he needed to identify the location and the type, and prescribe medication to tackle it. Two dislocated shoulders represented a terrific success.

Curiously, though, five years later and still seizure-free, when the topic of epilepsy arises in conversation, I tend to pause briefly. The condition is so well managed that it is barely noticeable, so there are days I can convince myself I don’t even have it.

I struggle to find the words to describe my relationship with the condition. Do I have epilepsy, like one might have a cold or some other condition? Do I suffer from epilepsy? Am I epileptic? Or an epileptic, with all the ugly Victorian echoes in that suffix? I usually end up garbling something like: “I was diagnosed with epilepsy a few years ago”, seeing clearly how the sentence inserts a subtle distance between me and epilepsy, while also rooting it in the past tense.

It’s partly that I don’t want to try and own a pain that’s not really mine. Other people have worse epilepsy than I do. But the real truth is that, once I had the diagnosis and my neurologist decided that brain surgery wouldn’t be necessary, I was more than happy to square it away in a box marked The Past.

I have never really interrogated why that might be. Certainly, fear. The previous six or seven years had been both frightening and gruelling, and the diagnosis meant it was over.

But there was also embarrassment. Epilepsy is a frustrating, unsettling condition that robs your memory, jolts your muscles and makes you fall on the ground. Some people soil themselves. People with other conditions can be portrayed as stoic heroes, battling courageously for their lives. Epilepsy can leave you feeling undignified.

It’s clear that society is just as uncomfortable. Consider the results of a new opinion poll – the full details of which will be published by Epilepsy Ireland, the advocacy group – which shows that 65 per cent of people believe there can be a social stigma attached to those who have epilepsy.

That’s 40,000 people in Ireland, all affected by epilepsy in different ways, but bound – perversely – by its ability to make them isolated and alone.

Powerful dream

When people think of epilepsy, they think of sudden, alarming seizures and it’s not hard to see how that can throw up a barrier. But it also has a more subtle, insidious way of manifesting itself that can be no less isolating.

By way of explanation: in the summer of 2010, I began to experience the oddest feeling. I was living in New York at the time and the city was enjoying — if that’s the right word — its hottest temperatures for years. I was suffering the kind of unpleasant, inconsistent sleep to which people who can’t afford air conditioning units are condemned.

There was something else. On some mornings, I would wake up particularly unrefreshed and with the nagging, distracting feeling that the dream I’d just had was more than a mere dream. It felt more powerful and more vivid and it lingered far longer. It wasn’t quite a nightmare; it was more like the strongest sense of déjà vu I had ever experienced.

Initially, I wrote it off as dehydration, and pledged to drink more of the right stuff and less of the wrong stuff. It would iron itself out.

It didn’t. I continued to experience it through 2010, 2011 and 2012. I know this, not because I have very strong and defined memories of it happening, but because I have the online chat records from the time that show it was beginning to play on my mind.

By 2012, I was living with my wife Gillian in Midwood, a quiet, mostly Orthodox Jewish neighbourhood in the vast, low-rise heart of Brooklyn. There, I decided to see a doctor – the one time in four years in New York I had any reason to seek medical attention — only to be met with a blank stare and a generalised recommendation about cutting back and increasing exercise. Good advice, but not particularly specific to vague complaints about déjà vu.

It was still nagging at me when we moved home in 2013, so I went to a local GP. By now, I was beginning to become considerably more concerned, but my Irish GP had as little insight as my New York GP.

Like all fools, I began to self-diagnose. It is clear from my internet chat records that I was talking about it more, and that the episodes were starting to happen in the course of my regular day, rather than just during the night.

By spring 2014, I decided to ditch my GP and try a new one. But he too waved away my concerns as so much internet MDing and indulgent hypochondria. After all, what do you tell a person who can’t even describe their symptoms?

I began to keep a diary of the events in a file on my phone. In it, I would record any instance of weird activity with my brain, and this is the only way I can accurately recall the events of that time. What that diary shows is that by the middle of 2014 things had begun to accelerate fast — too fast to even begin to detail in this article.

A couple of instances stand out, though. In August, we went to the Burren for a short family holiday. The following day, after an apparent seizure, the entire thing was wiped from my memory. Gillian remembers me sitting in her parents’ kitchen trying to figure out where I’d got a jumper I’d bought on the trip. I had no memory of going to the Burren at all. (And still don’t, really.)

A month later, I blanked out in work. My memory is that I was working away on my computer and then, seemingly a second later, the editor was standing beside me, pushing a cup of water towards me with a stricken look on his face.

Then in came the clincher. On an otherwise uneventful Saturday, I was sitting on the floor of the front room, playing with my daughter. She had been for her first haircut and Gillian was in the kitchen making dinner. She remembers me coming in and asking her: “Remind me what happened today?”

It was another major loss of memory, one alarming enough to convince Gillian – apparently I couldn’t really understand her concern – to ring the local out of hours doctors’ service, who told us to go to accident and emergency, where I spent the night sleeping on a trolley underneath the admissions desk.

From there, my GP referred me to a neurologist, who in turn ran me through the standard MRI scan and EEG test, and came to the working conclusion that I had epilepsy.

I was exhausted by this stage. I was also confused, embarrassed and afraid. It had been a distressing few years. My brain was beginning to become unreliable, maybe even dangerously so. I once walked from Baggot Street to Heuston Station to catch my evening train, only to arrive in the train carriage with no memory of the walk through winding streets, across busy junctions and down a Luas track.

I was even more worried about work. Journalism is a job where the only thing I really needed to stay functioning was my cognitive ability. I still remember, with acute embarrassment, the moment I blanked in the middle of a news meeting when I couldn’t remember the name or function of a company I was writing about. It was making me anxious, depressed and, at times, angry.

That’s the nature of epilepsy. It can be internal, invisible and isolating. How does one share the burden of a thing that evades adequate description? How do you marshal your brain sufficiently to tell people your brain is delicately, subtly misfiring?

For plenty of people, it can be more than subtle.

Oliver Kilmartin: ‘The medications are so time consuming, and they really zap you’

Gruelling journey

On YouTube, you can find a video of Oliver Kilmartin from 2012. He had agreed to be interviewed by Epilepsy Ireland, the national advocacy group, about how epilepsy affected him.

Kilmartin developed epilepsy when he was 11. One day he was walking to school and, in his words, just keeled over. It began a gruelling journey to get a precise fix on where his epilepsy was happening and, most importantly, which combinations of medications would give him the best coverage.

What is most remarkable is not necessarily the story about the physical impacts of epilepsy – though we will get to those in a minute – but the apparent impact it had on his social life.

In the video, he describes the reaction from his peer group, saying: “Guys don’t really understand at such a young age what epilepsy is, so I lost a lot of my friends in school and I was quite alone.” His friends drifted away, and those who stayed seemed to treat him like an invalid, he felt, occasionally even opening the door for him.

It interrupted his schoolwork too, he tells me nine years later. “I was having focal seizures throughout the day, constantly losing my attention span,” he says.

Then there were an extraordinary number of injuries, from broken wrists and dislocated shoulders to a sprained back that forced him into a wheelchair for a week. He’s had staples in his skull, and smashed his teeth and his upper jaw after falling out of a car during a seizure.

On their own, they would be distressing. In a cluster at a vulnerable time of your life, they take a greater than physical toll, Kilmartin says. “Most of them are my teenage years, so I was pretty traumatised for a while about having epilepsy.”

Meanwhile, the medications intended to bring it all under control brought with them their own burdens. He describes “years of these horrendous side effects”. At one stage, he was in a shower and clumps of his hair fell out – a rare, but predictable side effect of one particular drug. (It grew back.)

“They're so consuming of your time, and they mess with your sleep and your appetite and your mood and your concentration,” he says. “They just really zap you.”

It all made it extremely difficult for him to build up the kind of momentum that a teenager needs to get through a demanding ordeal like the Leaving Certificate.

“I had a seizure in one of my exams, a grand mal seizure, and I had one just before leaving the house,” he says, on top of focal seizures during exams. “It was a terrible, terrible experience.”

After school, Kilmartin took some time out to give himself an emotional break and to work on finding a medication to properly manage his epilepsy. (He succeeded.) And while he’s back into education now, studying law in UCD, with big ambitions for his future, the trauma is still palpable.

“I can be quite nervous, going into new environments and things like that; interacting with other people,” he says, and he can sometimes feel other people’s discomfort or uneasiness when he mentions his epilepsy, which can make him anxious about meeting and interacting with new people.

Extraordinarily complex

We have made incredible strides in our understanding of the brain in recent generations, but the brain is an extraordinarily complex organ whose full mysteries we do not yet understand.

Colin Doherty is a consultant neurologist and director of the epilepsy service at St James's Hospital in Dublin. He says that there are around 40,000 people with epilepsy in Ireland, with 2,000 people diagnosed every year with the condition.

“The brain has 100 billion neurons. It's about as complex as our galaxy,” Doherty says. “Each of those neurons, by the way, just to give you an idea of the scale, if you were to align them end to end starting in Dublin, you'd end up in Paris.”

In an ordinary brain, they hum along, sending electrical signals between each other, with the hundred billion neurons producing 100 trillion connections, forward and backwards.

That’s what makes the brain different to, say, the lungs, Doherty says. “So, let's say we've got two cell biologists. Both of them are Nobel Prize winners; one understands how a lung cell works, and the other understands how a neuron works. The reality is that the cell sitting in the lung with all its partners, its activity is much more straightforward than the combinatorial issues that happen to the brain."

That complexity bedevilled science and medicine for generations, with epilepsy patients in Europe often sent to what were once known as insane asylums. And while our understanding of both epilepsy and mental health has improved, it’s probably not an accident that on both fronts we have lots of progress to make.

Ronan Kilbride, my own neurologist and the director of the national epilepsy programme in Beaumont Hospital, agrees there is a cultural stigma. He believes it leaves people who have epilepsy often unsure how to relate to their condition.

When I describe my inability to find the right words to describe my relationship with epilepsy, and how it seems to indicate an unexpressed discomfort with the condition, he assures me this is not uncommon.

“I know it feels like your particular journey, but that’s actually the norm for this condition,” he says.

“It’s a unique condition, like that. Apart from the societal stigma that has been there for centuries – and millennia – and which varies within different cultures, [patients sometimes] do not know how to tell other people, but they also don’t know their own positions themselves.”

Social isolation

Lorraine Lally is a barrister and has seen society’s reaction to epilepsy both from a personal and a professional perspective. She knows better than most the resistance people have to the condition.

Lally was diagnosed at the age of eight. Like Oliver Kilmartin, she’s had her fair share of injuries, both from the condition and from the medication. A few years ago, she was boiling a kettle to make some tea when she had another absence seizure. Instead of pouring the boiling water into the cup, she poured the entire thing over her own left hand. When she came back to consciousness, her brother and father were forcibly holding her hand in the cold water to reduce the swelling. One Christmas, she developed a near-fatal rash which was a side effect of one form of medication.

When she first started talking about her epilepsy, she told a small group of her fellow barristers. “Some people were very supportive and they said, ‘Well done, I just want to say I’m really proud of you,’ and other people wrote me kind cards,” she says.

Others, though, reacted less well. “I had another group of people who said to me: ‘What the hell did you do? What are you thinking? You’re never going to get hired again’,” she says, characterising the response.

As a barrister, Lally also represents people who take workplace discrimination cases against their employers. She knows there are a large number of adults with epilepsy who are unemployed because of society’s misunderstandings about the condition.

Lorraine Lally: ‘Some people were very supportive, but I had others who said: “You’re never going to get hired again”.’

She is evidently still shocked that some companies would rather pay out on a discrimination case than make the accommodations for an employee with epilepsy. One client, she says, simply wanted to stay at work, but was offered a sizeable sum to walk away, but fought to stay working.

As she describes it: “He turned to me and said: ‘What am I supposed to do? Sit at home and rot? I want a life’.”

Talking more openly about epilepsy is the key, for Lally, to de-stigmatising the condition and preventing the kind of social isolation that it can create.

That’s why Gareth O’Neill talks about it too. When O’Neill was ten, he began to have what he described as “weird sensations around my body”. They became more frequent, and he was diagnosed with epilepsy.

As he describes it, he turned from a very outgoing, bubbly child to a far quieter and introspective one. A teacher asked him about it one day, and he recalls telling her, “Miss, I've got diagnosed with epilepsy, and I don't know what to do, or I don't know how to feel about it. I really don't know.”

He had to stop playing sport and retreat from social life as he cycled through a variety of different medications to try and control the seizures, and college seemed daunting, with memory loss and multiple seizures a day.

O’Neill’s doctors identified a brain tumour the size of a tennis ball on his temporal lobe, but originally he was told to avoid sports, even being told to put a note on the door when he was having a shower in case he fell and hit his head. “I was absolutely devastated,” he says. “I was in tears.”

But after getting a second opinion, he had brain surgery in the Royal Hospital in Belfast, which “just changed my whole life”, he says, and now he tries to “talk to other people who have epilepsy and tell them this is nothing to be ashamed of, it’s nothing to be embarrassed about”.

It’s an important job. Like Lorraine Lally and Oliver Kilmartin, he feels he’s an advocate for other people with epilepsy – helping to strip away the stigma by talking openly, rather than my own approach, which had been to take my medication morning and evening but otherwise neatly square epilepsy into some unconscious compartment of my brain.

I ask him what his ultimate aim is. The answer is simple. “I would love for people not to feel alone, not to feel embarrassed,” he says. “And not to feel that they can’t talk about it.”

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