He won the 2003 World Cup. But now diagnosed with early onset dementia, hooker Steve Thompson, 43, remembers nothing of that match, or the birth of his own children.
The 6ft 3in, 18st World Cup-winning rugby player Steve Thompson, famed for his brute force and fearlessness on the pitch, wept when he recorded the audio version of his memoir, Unforgettable. He was in the middle of reading his own life story. "The problem was, by the time the words were coming out of my mouth, they made no sense." He laughs now, something he does a lot – at least when he's not emotionally poleaxed by his diagnosis of early onset dementia and suspected CTE (chronic traumatic encephalopathy). Or as Thompson, 43, calls it, "brain damage".
"I laugh at it now but it was horrendous. I was sat in this little soundproof booth in tears. I could see the poor lad from the publisher thinking, 'What have we got here?'"
It was as though his brain was sabotaging him. He'd be doing fine – then one word would throw him. He managed to get through his book in the end, by reducing the text to one paragraph per page. Finally, the words stopped dissolving in front of his eyes.
It's 16 months since Thompson made headlines with his diagnosis, caused, he believes, by years of violent head collisions playing rugby for Northampton, Brive and England, with 73 caps ("It was my job to have the sh** knocked out of me," he says in the book). According to Sir Clive Woodward, England's World Cup-winning coach, without Thompson's throw-in, Jonny Wilkinson would never have scored his legendary extra-time drop goal in the World Cup final in 2003. But his brain cells over his career literally took a hammering.
We meet at his home in a Cheshire village on a sunny spring morning. I had wondered how Thompson would cope with a stranger in the house, but today's a good day. He sprawls on his sofa, hugging a cushion to his chest, much like he would have done a rugby ball. A big friendly giant. His wife, Steph, tiny in comparison, sits beside him. Every so often she'll give his huge bear head a stroke, as if comforting a toddler. When a word eludes her husband, she automatically fills in the gaps – "Shed," she says when he vaguely points to a makeshift structure in the garden – as though she can read his brain-damaged mind. His children – Seren, 9, Slone, 7, Saskia, 5, Saxon, 3 – have learnt to second-guess him too.
Especially when he forgets their names.
Seren, the eldest: "You don't know my name, do you?"
Her dad: "Yeah, I do." (Bluffing.)
Seren: "All right then, three guesses. If you get it wrong you have to give me a fiver."
Sometimes it's the odd word that draws a blank. (He'll scrunch up his eyes and reach for his phone. Google is a marvellous thing.) Sometimes it's everyday stuff. His vocabulary has shrunk. He can be in the middle of cooking a Sunday roast and then abruptly forget how the hell to do it. The other day Steph discovered just in time that he had left a frying pan on the hob without switching it off. He can be in the car driving on roads he's travelled hundreds of times and look up with "not a Scooby" where he is. He describes it as like someone switching off the mains.
"I'll be honest, when he goes out I'm terrified," says Steph.
Other times it's once-in-a-lifetime events. He has no memory of winning the World Cup, nor any part of the tournament in Australia. When he watches the final on television, he could be watching a stranger: "All I see is a fat lad, round head, big arse… Knowing what I do know now, I 100 per cent wish it had never happened." He cannot remember meeting the Queen to accept his MBE, nor the victory parade though London's West End, nor winning BBC Sports Team of the Year.
His memory is like an Etch A Sketch drawing – there one moment, wiped out the next. Increasingly, he has forgotten the very moments that make us who we are and it's those – never mind the fans and the medals – that hurt the most. He no longer recalls the births of his children. His wedding day in Las Vegas is beginning to fade.
Today may be a good day, but it's been a rough few weeks. The memory losses are just one of his symptoms. There's also the mood swings. His downs used to last a day or so, says Steph; now they linger for weeks. He has stood on the train station platform imagining what it would be like to throw himself onto the track. "You just feel, 'I don't deserve to be here.' I used to think people who took their own lives were selfish whereas now I think it's probably one of the most selfless things you could do. You think everyone else is better off without you."
"But they're not," says Steph, giving him a pat. "You're going nowhere, love. We just need to get you sorted."
As a result of the emotional turmoil, and for the sake of his family – "No child should wake up thinking, 'What mood is Dad in today?'" – he has recently decided to start taking medication for his anxiety and depression. "I just want something that levels me out a bit. I'll put my hand up – I used to think any talk about mental health was a massive weakness. I used to think it's a load of rubbish. But I get it now. If anything, I hate the highs as much as the lows. Because in the highs I just want to do everything, like I used to. And then I start coming down and I realise I'm going to let everyone down, because I just can't do it any more."
The irony is that he's got more on now than when he was playing twice a week and training every day, including gruelling sessions on scrum machines when he'd literally see white dots in front of his eyes. He's filming a documentary for the BBC in which he's retracing his life, returning to the rough end of Northampton where he grew up and the school where he laced up a pair of rugby boots for the first time. (His first love was basketball. If only he'd stuck at that, he berates himself.)
Then there's the legal case that he and other players are bringing against rugby bosses, alleging that they failed to act on clear evidence of the risks of head injury. The lawyers believe as many as 50 per cent of professional players from Thompson's era will end up with neurological problems. Thompson says 300 former rugby players have already come forward with suspected symptoms.
His memoir is part of this mission – to help people understand what it's like to live with dementia. Gone are the days when Thompson could have written it by himself. Instead, for months, he'd meet with a ghostwriter every evening and they'd talk through what had happened to him. I suspect it was cathartic. Unforgettable is as much a record of his life for his kids when he can no longer tell them as it is a rugby book. It asks the question, what does a life mean if you can't remember it? If you can't remember the past, how can you come to peace with it? Moving and surprisingly profound, I can't think of many other sport memoirs that are likely to make you cry. He ends it by hoping that when the last scrap of memory does go, it will be Steph and the kids – "Laughing, playing and, for the sake of realism, bickering" – that he'll see in his mind's eye.
———————————
It was a physical injury that ended Thompson's career. He's broken his neck twice; his shoulders, elbows and knees are blown to pieces – so much so Steph sometimes has to push him up the stairs. But it was the brain injury that did for him. For years he thought that the unpredictable memory lapses were normal. Or he'd try to cover them up, hope that nobody would notice. He looks back now and wonders whether snap decisions he made in the past were all down to the brain injuries, gradually mounting up inside his skull.
Steph – who met him towards the end of his career, had no idea who he was, was not a rugby fan and will never be one now – put the moments of brain fog and moodiness down to tiredness or stress.
At a Sport Aid event two years ago an audience member asked a question about the World Cup. "I told them, I don't remember any of it. This room of about 1000 people just gasped. And that's when I started to think, 'Something is wrong here.'"
It was another rugby player, Alix Popham, who suggested he be tested. Popham, the former Wales back-row forward who had played with Thompson at the French club Brive, had the same symptoms. "He described how his personality had changed, how he would forget names, words, the simplest things. There were times out of nowhere he felt aggressive and angry. I couldn't believe what I was hearing. It was as if he was talking about me." Thompson took some cognitive tests which he struggled with. But it was when he underwent a scan at King's College London, his head screwed down with a clamp, that the results were unequivocal.
They arrived on an email attachment – this was during Covid and a face-to-face appointment, even for something as traumatic as this, was not forthcoming. The healthy part of his brain would look grey, he was told; the dead bits would be yellow. He stared at the scan – there was an awful lot of yellow. His brain showed the same kind of damage that the victim of a fatal car accident would have. The only difference was that between each collision on the pitch, his neural pathways had had a chance to mend again – before the next blow came piling in. "If I'd sustained this much damage in one go, I wouldn't be having the conversation. The good news – that I wasn't dead – pretty much ended there."
Great to read a coach articulating such a refreshing perspective. Some others should take note.
— Nicks Johnston (@nicksjj) April 19, 2022
Red cards help cut brain risks, says Steve Borthwickhttps://t.co/GqsQ909mEP
He still has the scan on his phone.
To begin with, he was relieved. "I'm not stupid," he thought. But this was swiftly followed by horror.
"I think when you first got told, everything just crashes around you," Steph says. "I thought, I'm going to lose him within five years. And I was devastated. But over time, talking to doctors, we're trying to find a brighter future. Obviously the diagnosis isn't going to change, and he will decline, but he isn't about to die. Now I just think we take it day by day."
Since being diagnosed, he has become a powerful campaigner for change to the sport. "I didn't know rugby could be lethal," he says bluntly. He isn't alone – Sam Warburton, the former Welsh rugby captain, has said, "How long will it be before we see a player die on live TV?" Former internationals James Haskell and Jamie Cudmore have set up the lobbying group Progressive Rugby, demanding that World Rugby accepts that playing professional rugby can lead to CTE.
On the other side of the debate, Matt Dawson, a former team-mate of Thompson, insists he will hold no grudge against the sport if he develops long-term issues. "I don't feel the game let me down. The whole of my life is because I chose to play rugby. I'm a big boy, I made that decision."
But Thompson argues that after the sport became professional in 1995, a game once known for agility and speed became relentless, too reliant on power and strength. In the book he writes, "I went from someone with real agility to a solid block with a 24-inch neck. I was basically half man, half bull." His generation were, he says, "like crash test dummies". Three days after the World Cup victory they were in training again.
"Time and again, I'd be knocked out training and the level of concern from those around me would be nothing more than a shrug of shoulders. After all, it was just Thommo, and Thommo was always OK, wasn't he? Now I believe I did my job but the people around me didn't. They were dishonest and they hid stuff."
Even now, with cases like his, "There are people in rugby, from top to bottom, who remain oblivious to the risks." He cites the case of Luke Cowan-Dickie who was knocked unconscious in the 61st minute of a match last summer. He lay motionless for several seconds, until a team of medics attended to him and rolled him on to his back. Cowan-Dickie was able to get to his feet and walk off three minutes after the initial contact. The next day he flew to South Africa for the Lions and played the following Saturday. "Even the Boxing Association came out and said if one of our boxers got knocked out, we wouldn't even let him train for six months."
He wants players to be given annual brain scans, concussion holidays of three weeks, better medically trained pitch-side personnel, a limit on contact in training. Perhaps most controversially, he wants substitutes to be used differently. "A situation has arisen where teams can throw on eight fresh subs and use them to smash a vulnerable opposition. They should only ever be used in the case of injuries."
As soon as he started speaking up, along came the Twitter trolls. The worst were the rugby mums, he says. "You're ruining my son's life", "I've lost respect for you", "You're destroying the game" and worse. "Rugby needs to start over. They tell me I want to make the game soft. But I want to make it safer! Sport is something most people do to stay healthy, not have their future taken away."
There's no way, he says, that he'd allow his children to play rugby the way it is played at the moment.
————————
Sometimes Thompson feels like "a big phoney" because his memories escape him. "I feel like a fraud, that I'm letting people down, because I can't tell them the rugby stories they want to hear." But – no doubt exacerbated by his diagnosis – I suspect Thompson has always struggled with his self-esteem and steaming hell for leather down a rugby pitch was one way of offsetting it.
Certainly, there's no love lost between him and his mother and stepfather, who abruptly told him to leave home at 16. He has not spoken to them since. Friends' parents would take pity on him and set him a place for dinner. In the end, his team-mates ended up being more like family – which might be another reason he never wanted to let them down on the pitch, unwittingly jeopardising his own life in the process.
"It's been nice for you having your own kids," says Steph, "because you found the love that you'd never experienced before." Seren found out he was ill at the school gate when she overheard one of the parents consoling Steph. Thompson makes a point of spending as much time with the children as he can, hoping he can program himself in their minds as he is now and not the man he may become. "I want them to remember how it felt to be hugged, to be kissed, to feel my bristles." He struggles saying no to them – "I need to enjoy every minute of this while I can." Saskia, meanwhile, has learnt how to fill in the gaps, just like her mum does. "She came out and out of nowhere sat on my knee and started kissing me on the head." Now she does it every night when he puts her to bed.
How does the future look? "We've stopped really talking about it for the minute," says Steph. They used to argue but she has learnt to walk away, or simply agree, when Steve is in one of his black moods. Before the diagnosis he worked for a company mending burst water mains, often doing the night shift, but his neurologist worried that the lack of sleep was exacerbating his symptoms. Now he works for an occupational health organisation.
'His personality changed': The concussions that saw rugby star diagnosed with dementia aged just 60https://t.co/kbU5nnLi9l
— ITV Wales News (@ITVWales) April 19, 2022
How are they financially?
"Month to month," says Steve. "Worse than we've ever been." What haunts him is the knowledge that in the end he might need residential care, which costs on average £100,000 [NZ$192,888] a year – and that's even if he can get it. Most care homes won't take anyone under 60. "In the space of a few years, there's going to be a group of 6ft, 18st men [his generation of rugby players] who need somewhere to go and no one will be willing to take them."
There's a chance that the legal case will come good – in 2013, 4500 former American football players sued the National Football League and won a settlement worth around £700 million. But he isn't holding his breath – there's no point investing a lot in it because it's just going to wear him out. "Yeah, I just need to try to come up with a plan where I can keep a roof over our heads."
Instead, he tries to eat healthily and exercise. Every morning he does red light therapy – red light is said to reduce inflammation and encourage the body's repair system. At the same time he also does thin air therapy. The idea is that breathing reduced-oxygen air encourages the development of new blood vessels. There are a few signs of hope – he thinks he would be worse if he was doing nothing. He has learnt the hard way not to overexert himself. His neuropsychiatrist has explained that, "I'm like an old Nokia battery that needs to get charged regularly, otherwise I crash."
It's midday. We've been talking for two hours. I can see the effort it's been, and how exhausting it must be to hold it together. It's hard to imagine what it must be like to talk about a life that is disappearing, bit by bit.
I wonder what he'll do after I leave.
"He'll have a sleep," says Steph, speaking for him. "He'll have a sleep all afternoon."
Rugby and dementia
An increasing number of athletes in contact sports are being diagnosed with suspected chronic traumatic encephalopathy (CTE).
Fifty former elite rugby players, including England's Ben Kay and Wales' Shane Williams, have been recruited by the Alzheimer's Society to take part in a study into whether they are more likely to show early warning signs of dementia.
New Zealand prop Carl Hayman was also diagnosed with CTE aged 41.
The disease is characterised by the accumulation of noxious proteins in the brain caused by repeated head traumas.
While these proteins can only be detected in a post-mortem examination, biomarkers can be used to detect the severity of brain injuries as they happen.
Currently most biomarker tests, such as blood tests, involve time or specialist equipment, however researchers at the University of Birmingham have developed a saliva test that could offer instant results.
By measuring microRNAs, a sensitive biomarker released at the point of injury, the test can quickly indicate the severity of a brain trauma so officials know when a player should be taken off the pitch.
It's hoped it will be available for pitch-side testing in the next three to five years.
• Unforgettable: Rugby, Dementia and the Fight of My Life by Steve Thompson is published on April 28 by Blink Publishing
Written by: Louise France
© The Times of London