‘Charlie probably knew far better than the rest of us that death was coming’

Standing in a field on a beautiful summer’s day, I received the call telling me my brother Charlie had died.

It was a remarkably tranquil scene. Tall grass swayed on either side of me in the warmth of the afternoon sun. I was eight months pregnant with my second baby, and my partner and I were indulging in a child-free weekend in Norfolk. Walking back to our accommodation after a pub lunch, I noticed two missed calls from my mum. I called back, but her voice was strange. She insisted on speaking to my partner.

With hindsight that day sometimes feels like the last I had any remaining childhood innocence. Before we’d set off for the pub that morning, we had watched a family of partridges dash across the garden and noticed a tiny chick get trapped between two flagstones. I managed to prise it free and watched it scurry to rejoin its family, making a mental note to tell my parents about the rescue operation later. I never did.

Even now, 10 months later, I find it physically painful to remember the anguished expression on my partner’s face as he learnt the news, then turned to me and said: “It’s your brother.” 

In the second that followed, ­several dreadful possibilities flitted through my mind: he was in a coma; he had broken his spine; he had been hit by a car. I knew something was badly wrong but still could not envisage the very worst.

“He’s dead,” he added. I almost laughed. “You’re joking — that’s not funny,” I shouted. Even though as the words tumbled out of my mouth I knew it wasn’t a joke.

Charlie was 32 and had arguably just had the best year of his life. He was brimming with happiness, excitement and ambition. He had met the love of his life, Hannah, 18 months earlier, and had been carefully transforming his rented flat in Camberwell from an unkempt lad pad into a stylish sanctuary in an effort to convince her to move in. Having worked in the charity sector for the past decade, he had just begun studying to become an occupational therapist. He was fitter than ever, tanned from his jogs around the park and basketball sessions, and at 6ft4in was a towering picture of good health. He was beautiful.

The idea that Charlie — funny, kind, mischievous Charlie — could be dead just didn’t make sense. It still doesn’t. 

Meeting him for the first time, most would have assumed he led a somewhat charmed life. He was white, middle class and well educated. He spent compulsively on clothes, gadgets and takeaways, with Domino’s Pizza practically on speed dial. He was fanatical about Tottenham Hotspur football club, the other great love of his life, and had successfully converted family members, girlfriends and colleagues into becoming life-long supporters of the “mighty Spurs”. 

At parties he gave the biggest hugs, had the most distinctive laugh — something between a baritone guffaw and a girlish chuckle — and was often the lead instigator of high-spirited silliness: beer pong, arm wrestling, dance-offs and tequila shots. Whenever I try to remember Charlie’s voice, I picture him turning to me, his big brown eyes lighting up, and cheerfully asking: “Y’alright Mads?” 

But Charlie was also proof that looks can be deceiving. All his outward exuberance and conviviality masked the fact that he was living with a punishing disability, which is ultimately what took him from us. He died last June when he did not wake up from an epileptic ­seizure. The cause of death is still being investigated but sudden unexpected death in epilepsy — something that affects about one in 1,000 people with the condition — is a probable contributor.

Charlie was 14 when he had his first seizure. We were together at my dad’s house walking towards the kitchen when he dropped to the floor, limbs thrashing, neck contorted, making strange choking noises.

I thought he was dying, panicked and ran in the opposite direction up the stairs before regaining my senses and rushing back. Fortunately my stepmum, a nurse, took charge and called an ambulance. Our family’s optimism that this might be a one-off faded when the next seizure struck a month later. And then again and again, monthly or weekly for the next 16 years.

It was a particularly cruel form of epilepsy. The charity Epilepsy Action estimates that about half of the 600,000 people in the UK with the condition manage to control it entirely with medication and live seizure-free. Only about one-third of people with epilepsy have uncontrolled seizures that do not respond to medication, and Charlie was one of them. The violence and unpredictability of his seizures never ceased, meaning that a huge list of everyday activities became perilous: crossing the road, climbing the stairs, having a shower, frying an egg, sitting near a sharp-edged coffee table.

During his teenage years, I was there for many seizures that hit out of the blue — walking to the station, picnicking in the park, queueing at an airport. The public response was at times heartwarming and at other times shocking. There were kind individuals who rushed to fetch medical assistance, water or blankets while I cradled Charlie’s head to stop him from hurting himself. There were other occasions where bystanders pointed and laughed, or worse, ignored him. Charlie frequently woke up dazed, covered in blood and lying on a pavement, alone.

Although epilepsy is considered a “hidden disability”, as the years went by its toll became increasingly visible. Scars ran across Charlie’s chin, knees, knuckles, scalp and eyebrows from where his colossal body had unexpectedly crashed to the ground and pounded against it until the thrashing stopped. Given the extremity of his condition, it is perhaps unsurprising that it completely altered the trajectory of his life.

Charlie was my almost-twin, just 11 months younger than me. Growing up, we were fiercely competitive and, it pains me to admit it, pretty evenly matched. There isn’t a single game, sport or childhood activity that doesn’t remind me of him: Monopoly, Risk, chess, cards, tennis, Scalextric, remote control cars, building dams or tree houses, baking, ping pong, walkie-talkies, knock down ginger, rock pooling, table football. In our early teens we hatched a plan to go to university together once I had taken a gap year and he had finished his A-levels. We were both doing well academically and set our hopes on Oxford.

But everything changed after his diagnosis. He was put on high levels of medication in an attempt to control the seizures, which affected his memory, sleep and energy levels. Every time he had a seizure, it took days to recover, so he missed a lot of school. And he was so desperate not to let his condition dictate how he lived, he veered the other way — partying, boozing, smoking weed. He took gleeful pride in the fact that his AS-level grades spelt the word DUDE. I remember being furious with him for not doing the things the doctors recommended to limit the seizures: early bedtimes, healthy eating, taking his medication punctually. But now I look back with awe at Charlie the teenage party animal and think: how brave.

Charlie ended up getting things back on track and, after a couple of gap years, went to study politics at the University of Sussex, where he found a supportive group of friends. He completed his degree, a small miracle given his seizures were brought on by stressful events such as deadlines and exams and, after graduating, lived a fully independent adult life. In many ways, his twenties were completely conventional. Job hopping, dating and break-ups, holidays, house shares and football matches. But this too took unbelievable courage, for his epilepsy was a bit like being followed by a violent stalker who might club him over the head at any moment. How many of us would dare to leave the house, let alone work, travel and socialise, knowing an attack could come at any moment?

He never gave up hope that he might grow out of it, as many people living with epilepsy do. By his late twenties, the seizures came once every couple of months and, by his early thirties, twice a year. Post-seizure he was utterly crestfallen, his eyes two large, dark pools of fear and vulnerability. But then he would force himself back outside to do the things he loved: family get-togethers, dinner parties, rough and tumble play with his growing coterie of nieces and nephews.

After his penultimate seizure last June, I gave him a crass and no doubt irritating pep talk in an attempt to cheer him up about how brilliant it was that the seizures now came so rarely and how transformative that would be for his quality of life. His final seizure came two weeks later.

I realise now that Charlie probably knew far better than the rest of us that death was coming. He made a colossal effort with family, visiting cousins, second cousins, distant aunts and long lost uncles, and he was completely devoted to his small, complicated army of seven siblings. A few weeks before he died, he posted a hauntingly prophetic call to arms on his Instagram account: “If someone said to you, ‘Tomorrow you will have a seizure out of nowhere. It could happen at any moment and be potentially life threatening. You could suffer a traumatic brain injury or go into status epilepticus and potentially die.’ How would you spend tomorrow?

“Would you feel safe alone? Or getting the Tube? Crossing a road? Using a knife or boiling water in the kitchen? If you knew stress would set it off, how would the swell of stress make you feel?

“I often see people advocating for different causes on here and thought I’d share my perspective as someone with an invisible disability. Whether autistic, epileptic, depressed, bipolar, diabetic . . . the list is endless. Don’t make assumptions, and always err on the side of empathy and respect. It is impossible to know what someone is going through.”

This message has run through my head again and again since last June. I think of all the times I was less than empathetic towards Charlie and am astounded by the fact that, despite my regular big sister act — bossy, condescending and sharp-tongued — his love for me was immeasurable.

That day in June, we rushed back to London and the family started congregating at my sister’s house for the bleakest gathering of our lives. There I was handed a plastic bag from Charlie’s flat containing two presents for my unborn baby: a tiny Tottenham kit and a beautiful mobile with origami cranes that he had made himself. There is something about the fact that Charlie’s hands touched the paper, carefully folding it and tracing the creases with his fingers, that means it has become my most treasured possession. It hangs in our kitchen where it reminds me of him every day.

Five days after we laid Charlie to rest, my son was born. His middle name is Charlie. I can only hope he grows up to be as courageous and compassionate as his uncle.

Madison Marriage is an investigative reporter at the FT

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