Steve Thompson: ‘Care homes aren’t set up for massive rugby lads in their fifties’

Steve Thompson is in Hull, about to give a motivational speech to a firm of solicitors. You can imagine what they think they are about to hear. After all, the 44-year-old was a central part of the England team that won the 2003 Rugby World Cup, 19 years ago; a moment that still remains a pinnacle of the country’s sporting history. But if the lawyers lining up outside the hotel where he will speak have come expecting a flourish of anecdotes about what exactly it was the captain Martin Johnson said in the dressing room that night, they will be disappointed. Because Thompson cannot remember a single thing about the experience. When he tries to look back, his recall is wiped clean. Frankly, for all he knows, he might as well not have been in Sydney’s Stadium Australia when England ruled the rugby world.

“It’s a blank,” he says. “There’s no memory. It’s not just that game either. There’s whole chunks of my life missing, gone, nothing there.”

What Thompson is actually in Hull to talk about is what has happened to him since he gave up playing: what he describes as his slow death. Because the man who was once an exemplar of strength and health, English rugby’s barnstorming 6ft 4in wrecking ball, is on his way out. In December 2020 he revealed publicly that he had been diagnosed with early onset dementia and chronic traumatic encephalopathy. The scars writ large across his face are nothing to the unseen damage his playing career wrought on his brain, pummelled into submission by tens of thousands of sub-concussive blows.

“It’s like …” he says, as he sits in the hotel lounge, “it’s like you’re dead inside.”

He is in Hull, too, to talk about the legal case he and more than 200 other ex-professional players are bringing against the rugby authorities. Thompson says those in charge of the game have failed to acknowledge the damage done under their watch. What the group wants is compensation, a trust fund to help them finance the care they will need in their decline.

“There’s going to be hundreds of 6ft 4in 18-stone lads needing help,” he says. “Very few [care homes] take people under 60. Besides, care homes aren’t set up for massive rugby lads in their fifties.”

What he does know is that the case is demanding a change to the way players are protected, so the next generation are not as horribly compromised as they were. But when it comes to rugby, Thompson’s achievements haven’t gone away. The club, Six Nations and world titles he won, the 75 caps for his country, are there in the photographs, the medals and memorabilia he has stashed in a bag in a friend’s garage. It is his memory of them that has disappeared. And the problem he faces every day is this: memory is a central part of our character; without it, we forget who we are.

“People ask me questions about what I did,” he says. “I don’t want to be rude, so I go with other players’ stories. I feel phoney about it, I’m a bit embarrassed. When that happens to you all the time, you’re kind of tempted to think the best thing to do is to hide.”

But, despite the embarrassment, Thompson hasn’t hid. Since the pandemic subsided, he has been out and about, talking about his dementia. He has written an autobiography, Unforgettable: Rugby, Dementia and the Fight of My Life (Blink Publishing), recorded podcasts and done many a talk like the one he is about to deliver. Now he has let television cameras into his home to record the effect his condition has had on his family for a BBC Two documentary called Head On: Rugby, Dementia and Me. And it is a challenging watch. As it examines the daily reality, Thompson does not shirk the details of exposure. Like the painful moment when, as the camera films him in the kitchen of his Cheshire home, making pancakes with his daughter, he forgets his seven-year-old’s name. Her tender prompt is enough to draw tears from a stone.

“They know when it’s happening,” he says of his four young children – Seren, nine, Slone, seven, Saskia, five, and Saxon, three – when reminded of that incident. “They can see it in Daddy’s face. And they step in. Every night, when I say goodnight to them they each kiss me on the head. They’re hoping they can kiss it away.”

Sadly, his condition is continuing on its relentless, unforgiving path.

“You learn to live for the day,” he says. “No point looking further ahead. Because there is no further ahead.”

The problems first began to materialise about seven years ago. After retiring from the game he had forged a career in construction. He and his wife Steph had relocated to Dubai. They had started a family and were thinking of the days ahead, of growing old together, happily looking back on shared times. Instead, he went through a breakdown.

“In 2015 things started going wrong,” he says. “I started changing, the forgetfulness, the irritability. My head was in pieces. I was a nightmare to live with. I was falling apart, Steph couldn’t get me out of the chair. At first I was in denial. I was a macho rugby player, I didn’t do weakness. And for me mental health was a weakness.”

But his wife, nearing the end of her patience, insisted he get himself seen by a doctor.

“And when I eventually got the diagnosis it all made sense. What was going on in my life, there was a reason for it.”

It may have made sense, but when he realised there was no way out, that he could never get better or recover, he thought he knew what to do. After returning to live in England to be closer to medical attention, one day, failing to stem an all-enveloping depression, he went to a railway station with the determined intention to throw himself in front of a passing express.

“I don’t know how I’m here, if I’m honest,” he says. “The train was coming and I’d made up my mind. I was ready to jump. Then that thought of Steph and the kids came into my mind. I suddenly realised I’d leave them in a massive mess.”

An unexpected consequence of his condition is that he is now wholly focussed on his family, his wife and four young children. “I don’t know if I’m a better person, but I’m different,” he says. “I want to do all the things for them. I want to be there for their 16th birthday, their first driving lessons. Yeah, it’s unlikely I’ll walk them down the aisle, but I’ll do my best to prolong my time to be there for them.”

Since his diagnosis, he has found himself at the forefront of research into brain issues. He has been examined and re-examined. He has even bequeathed his brain to scientists at Oxford University. Along with a cocktail of drugs designed to reduce his dementia-stoked anxiety, he has been helped by psychologists to develop strategies for coping, working out ways to live with his illness. His exercise programme, the way he sprays his wife’s perfume on his sleeve to remind him of her, and his daily routine of an afternoon nap are all designed to counter stress.

“My doctor says my brain is like one of those old Nokia phones. Over time their battery life just declined. So I have to take care to charge my battery more often than I used to.”

He accepts he has been fortunate in his treatment. Most dementia patients have had nothing like the attention he has received. And now he wants to share what he has learned: he is starting a charitable foundation to pursue research and make it widely accessible.

But most of all what he wants from his experience is for people suffering from the same condition to appreciate they are not alone. If they see him out there, doing things, being busy, being proactive, it might suggest they are not on the scrap heap.

“I don’t want to be a charity case,” he says. “I still feel I have something to offer.”

However, like many of his stricken contemporaries, he has found it tough to secure employment, admitting that he and the family face a precarious financial future.

“During lockdown I was working repairing water pipes. Steph said I was like a pig in s---. Out with the lads, sharing the banter. True, sometimes I’d go to the van to collect some tools and forget what I was looking for. But I loved it. Then, when my diagnosis became public, the insurance put a stop to me doing that.”

He has, though, found his own path. “These days I’m working with an occupational health group, helping people find ways to get jobs, get a bit of self respect back.”

He is, in short, using his experience as an example.

“That’s it,” he says. “Getting this story told, it’s my, it’s my …”

He pauses for a moment.

“Sorry, lost it, what’s the word?”

“Responsibility?”

“Yeah, that’s it. That’s it, it’s my responsibility.”

Conversations with Thompson are punctuated with moments like this. For most of the time he is sharp, alert, full of dark humour. But then he will lose his thread, forget a word, need a prompt from his friend and agent Ben Thomas. And when the Telegraph photographer uses a flash, he holds his hands up in sudden alarm.

“Woah sorry no mate, I’m going to struggle with that,” he says. “Makes me feel sick. It’s weird, my whole balance goes. It’s like when I was out with the kids and they got me in the swing, I was all over the place.”

The fact is, Thompson’s brain is damaged beyond repair. No amount of reparation is going to change this central fact about his future: he knows things are only going to get worse.

“There are days when I’m really good, I think, ‘Hey there’s nothing wrong with me’ but then it hits me.”

And for a moment, you can see the fear in his eyes.

Head On: Rugby, Dementia and Me airs on Wednesday October 5 at 9pm on BBC Two and iPlayer