Patrick Walters was 21 when he met his first love, Josh Shotton, at a gay night in Oxford. “When he first came up to me, there was a fairytale quality to it,” says Walters. The pair didn’t cross paths again until Walters had finished university and returned to London. “He came to my 23rd birthday party,” says Walters, “and I remember thinking he was the most gorgeous person I’d ever seen, so cool and confident. We had this amazing night where we stayed up talking, getting to know each other. It all moved quickly after that, and we went into an overwhelmingly passionate and romantic relationship.”
Walters, now 35, is a television and film producer, and has just started rehearsals for the second season of the Netflix show Heartstopper – a cockle-warming coming-of-age romcom about the love between two grammar-school boys. When he and Shotton got together, Walters was fresh out of an internship and working as an assistant at a production company. Shotton, he says, “was very clever and encouraging. He was magical and had an indefinable sweetness. He was kind of quiet, but because he went to the gym he was muscular and good-looking. And he had a silliness to him, but also a robustness.”
Shotton, who was three years older than Walters, was an economics graduate playing professional high-stakes poker as a stopgap. “He’d got on to a very competitive graduate traineeship with an investment bank, but it was horrible,” says Walters. “The people were awful and he felt, as a gay man, othered.” So he decided to walk. He was extremely good at poker, and it became a way for him to make a living while he figured out his next move, his whole life unfurling ahead of him in a sometimes daunting – but always exciting – array of possible directions. But he never got to roll the dice.
In 2012, two years after they officially became an item, the couple were talking about moving in together when, suddenly and inexplicably, Shotton didn’t wake up one morning. When Walters hadn’t heard from him, he raised the alarm and a housemate found Shotton unresponsive. After lengthy investigations, the cause of the 27-year-old’s death was found to be sudden arrhythmic death syndrome (Sads) – an unexpected death assumed to be from a cardiac arrest (when the heart stops), but whose cause can’t be found. It is an often mysterious phenomenon of which awareness remains low, but it is among the biggest killers of young people. According to the British Heart Foundation, the UK has about 500 Sads cases every year.
Elijah Behr is professor in cardiological medicine at St George’s hospital and University of London, and a British Heart Foundation-funded researcher into the many unknowns concerning Sads. “When someone collapses and dies of no immediate identifiable cause,” he says, “there follows a local investigation by police and the coroner’s team. An autopsy is undertaken by the pathologist as instructed by the coroner, and sometimes that will also be followed by more expert evaluation by heart and brain specialists to see if they can find the cause. And then also toxicology testing to make sure there weren’t any drugs involved.” If a culprit isn’t found after all that, he says, the death can be attributed to Sads.
It is hard enough having to process the sudden loss of a young, healthy friend or lover when you are so young yourself, and the lack of explanation only added to the senselessness for Walters. “I’ve sometimes wondered whether, if he was run over, or if he’d been sick, or if there was something that allowed even just a little bit of narrative around him passing away, would we have been able to communicate about it better?” he says. “But because it was unexplained, you just don’t have a footing to have those conversations. This big act of randomness just completely changed your lives and you’ll never know why.”
Shotton had died in the early hours of the morning. After he had been found, the paramedics arrived but could do nothing other than confirm Shotton’s death. Walters’ memory of the rest of the day is a blur. When he arrived at Shotton’s house the paramedics explained what they knew so far, and asked Walters questions about Shotton’s routine. “His parents came from Oxford to the house,” he recalls, “and my parents came and some of our friends, and we all just congregated and waited until they were ready to take his body away. No one knew what to say or do.” He vaguely recalls a visit from the police but isn’t sure. “At that moment it was completely impossible to understand what was happening,” he says. “I was overwhelmed and dissociated – people were coming up and talking to me and I couldn’t really engage or interact at all. It was just so sudden, and such a shock. And the physical presence of him being upstairs felt so heavy.” Yet despite this, he didn’t want the moment to end because of the sense that “once they come and take him away, this is real. It was just completely unfathomable.” Afterwards, Walters went up to Shotton’s room, his second home: “His phone was charging, he had a glass of water by his bed and laundry he’d done the day before was hung up to dry.”
The majority of Sads cases probably result from heart rhythm disturbances that cause cardiac arrest. “It tends to be two-thirds more common in young men,” says Behr. But unlike the telltale clogged arteries associated with heart disease, heart rhythm disturbances leave no evidence once the heart stops beating. What can sometimes be detected after death are gene mutations indicating silent genetic conditions that can cause arrhythmia, such as Brugada syndrome and Long QT syndrome.
A cause like this can be found through DNA testing in just under half of Sads cases. One method involves setting aside some tissue from the body after death for analysis – “maybe a small piece of the spleen or liver, or a blood sample,” says Behr. “That diagnoses around 10 to 20% of cases.” The other route is looking at the DNA of close relatives. This testing can provide more than the closure afforded by learning the cause of death: it could save a relative who unknowingly has the same genetic condition.
This diagnostic process isn’t universally adhered to and Behr is leading a national programme with the NHS and the British Heart Foundation to “develop pathways for cases of sudden death, and their families, and the genetic testing and the suitable autopsies being performed in a timely and appropriate manner”.
Shotton’s family, who are based in Oxford, were tested, but, as with more than half of Sads cases, no genetic clues were found. The quest to find the cause of death in this small majority continues, and Behr is studying, among other things, the few “people who survived cardiac arrest – the survivors of sudden death – because we can assess them in a different way from people after they’ve died”.
Survival is a rare fluke. When an otherwise healthy heart stops suddenly, says Behr, “there’s no symptom preceding loss of consciousness”. Often, as in Shotton’s case, this happens in someone’s sleep, or when no one is around. If the collapse were witnessed, the only way to save the person would be knowledge of CPR and extremely fast access to a defibrillator, to shock the heart back into beating.
It is only now, a decade on, that Walters feels able to talk about Shotton’s death and its aftermath. At the time, friends suggested he try grief counselling, but he couldn’t bring himself to. “I was in denial,” he says, “and I felt no one could ever understand this very private, intimate relationship that meant so much to me.” He had written down lots of memories, determined to preserve their love, even talking to Shotton, promising to take care of his family, but he would shut down if friends or his parents broached the subject. “I wish I could go back and encourage myself to communicate,” says Walters. “It wouldn’t have broken what I’d had with Josh.
“I felt a lot of shame around being left behind, and being the only one that was carrying the tenderness, intimacy and pride in our relationship. To be left there, just half of it, I started feeling very anti-myself. I lost sight of the person that I was with him: strong, funny, the best version of myself.”
Walters stopped working, moved back in with his parents and eventually tried to go travelling, but was too miserable and came home early. After a six-month hiatus, he decided to put all his pent-up emotional energy into work. “I said: ‘This will be my outlet, and I’m going to try and push forward.’” He can’t help but wonder what would have happened had Shotton lived, and what future he had been deprived of. “He was one of those people who would have done the most extraordinary things,” says Walters. “He was so open and excited about life – that’s what’s hard on the anniversaries of his death, but I’ve got this acceptance now. I can let go.”
