This is the Times article
Ryan Jones: Rugby is walking eyes closed into a catastrophe – I feel like my world is falling apart
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Having had early-onset dementia diagnosed at the age of 41 after a stellar career, the former Wales captain talks about his fears for his future
That Saturday evening in Dunedin 17 years ago, Ryan Jones seemed more force of nature than rugby player. He was 24, he’d just worn the British & Irish Lions shirt for the first time, scored a try, made a try and snaffled all the important turnovers. Without him, the Lions might not have beaten Otago.
He was, of course, man of the match and as he sat down in the press conference room under Carisbrook Stadium, he wolfed down a slice of pizza. Like a kid hungry for the world he’d broken into. There wasn’t one person in the room who didn’t warm to the young No 8. Jones went on to enjoy a terrific career with 75 Tests for Wales, three for the Lions, three grand slams, one as captain. He skippered Wales on 33 occasions, a record at the time.
We meet now at The Groaker, Rhiwbina, a restaurant about three miles north of Cardiff city centre. He arrives with Charley, his partner, and seeing him now it is easy to recall the tyro who terrorised Otago that evening. Six feet five and almost 18 stones back then, he still looks strong and athletic.
Over coffee he begins to talk about his life now. Especially, his fears for the future. “I feel like my world is falling apart. And I am really scared. Because I’ve got three children and three step-children and I want to be a fantastic dad,” he says.
“I lived 15 years of my life like a superhero and I’m not. I don’t know what the future holds
“I am a product of an environment that is all about process and human performance. I’m not able to perform like I could. And I just want to lead a happy, healthy, normal life. I feel that’s been taken away and there’s nothing I can do. I can’t train harder, I can’t play the referee, I don’t know what the rules of the game are anymore.”
As he says this, he breaks down. Tears fill his eyes. Ryan Jones is 41 and another former rugby player with a serious brain injury. He received the diagnosis in December. Early onset dementia, probable chronic traumatic encephalopathy (CTE). They told him he was one of one of the worst cases they have seen, and they have seen many.
We walk to somewhere quieter, down Lon-Y-Dail road, left onto Lon Isa, another left to a little green area surrounded by houses. It is a warm summer’s day in Cardiff and on the grass he sits with Charley by his side. He then explains how he has ended up in this place.
There wasn’t any headline-grabbing moment, he says, where he realised he was in trouble. Rather a slow realisation that something was amiss. At first he tried to tell himself it was nothing: everyone forgets things, every former player struggles after retirement, everyone has down moments, until he couldn’t run away from it anymore. “I think the understanding came a few years ago through conversations with people close to me,” he says.
“Whether it was partner or family, they were noticing changes in me. I was diagnosed with depression and I started to realise that some of my cognitive function wasn’t great. I began to see that my short-term memory wasn’t great. I was forgetting things.”
What a doctor saw as depression was a symptom, not a cause. “Ryan would say to me, ‘I don’t think I am [depressed],’ ” Charley says. “He couldn’t explain. He would say, ‘I can’t articulate it Charley but there’s something not right. It’s not depression, it’s something else.’
“He would say things like, ‘My head just feels full,’ and he would have physical symptoms: headaches and eye problems often. And obviously these things are getting worse, but he would say, ‘I can’t get the words out.’ What we’ve certainly noticed the last couple of years is everything getting slower. He gets more anxious that he can’t get his words and he can’t put sentences together.
“We were talking about this the other day, Ryan was the Wales captain and he thrived under pressure. Now any form of stress he can’t cope with at all. And there’s an emotional cost to that. And he will just go really within himself — almost catatonic — to a point where he just has to be left alone in a dark room.”
He can’t avoid the moments that remind him of what he’s losing. He tells of doing an event with former Welsh player Sean Holley in . . . and he stops while trying to recall the town. Aberystwyth. Holley recalled incidents that happened in games, big moments they had shared on the pitch and as Jones listened, he couldn’t remember any of this. “It’s wasn’t like, ‘Ah, I now remember that.’ It’s like absolutely no recollection.”
Another recent moment cut him to the quick. For some time he’d been telling the kids that he’s got to take them to Pen y Fan, the highest peak in South Wales. And then, even more recently, he’s going through old stuff and he sees photos of himself and the kids on Pen y Fan: “I had been on about desperately wanting to take the kids to Pen y Fan and do the mountain, because they’d never done it, and I don’t look at the photo and [think] ‘Ah, I remember now,’ because I don’t.”
There are conversations now that he will soon forget. Things that he and Charley agreed that he doesn’t recall. That is upsetting for him as the absence of any recall leaves him convinced the original conversation can’t have taken place. “There’s been times I’ve recorded stuff,” she says. “Because I know he will forget it and he will challenge me — ‘I didn’t say that, I didn’t even have that conversation’ — and it will be something important. ‘You did darling, this is it [the recording].’ There’s a genuine, complete blank of memory, and it’s not until I show him something, and he can see it’s me and he trusts that I am being honest with him. It’s the short- term memory. The best way I can describe Ryan — it’s like having a conversation with my 85-year-old grandad.”
At first they would joke about the things he forgot; laughter was their way of coping. They knew they were in denial but didn’t want to have the conversation. Then came what Charley calls “the dark episodes”.
“Ryan got to a place where he thought, ‘Well, this is impacting on everyone else’s lives, especially the children’s lives’ and he knew he had to explore what had gone wrong,” she says. “The dark times were where he would get almost to the point of wanting to scream at this thing that he couldn’t explain to me. ‘Charley I can’t even talk, I haven’t got the capacity to talk about it.’”
They now pick up on the signs of a coming-down period and take precautions. Though he will try to function normally, it is a struggle and it’s a particular concern if his low mood overlaps with time he’s spending with the kids. Thirty-six hours is how long they last, though with this illness nothing stays the same.
“We don’t know where to go, where to find support,” Jones says. “We haven’t got any friends in this space. It terrifies me because I don’t know if, in two years’ time, we’re sat here and these episodes are a week long, two weeks long or permanent. That’s the fear, that’s the bit that never leaves. That’s the bit I can’t shake off
“Every episode I have also leaves a bit of a legacy. Everything we cancel, every relationship that I poison or don’t have time for anymore, just makes it a little bit tougher to cope. I don’t know how to slow that down, make it stop, what to do.”
Charley says the young Ryan she got to know at Cardiff University 20 years ago is no more. She sees a big change. Back then he was the eternal optimist, the guy who believed things would work out. Now there is almost constant anxiety about meeting strangers, about people judging him, about what kind of dad he’s going to be.
The diagnosis was unambiguous. Early onset dementia, probable CTE and yet, at last, clarity. “The stress of not knowing was becoming too big. There is a relief in diagnosis,” he says.
“There was a grief in diagnosis,” Charley says. “I don’t know if Ryan recognised this or not, because we haven’t really spoken about it. There was an, ‘Ah f***, it’s actually true,’ and I think there was part of him that was desperately hoping that the neurologist might say, ‘You’re fine, you’re one of the lucky ones.’ ”
They asked the neurologist about the future. He said the rate at which things deteriorated over the past five years is likely to continue.
After the diagnosis came the most difficult thing. Telling the children. Jacob is just 12, a keen and very good rugby player. A mini version of Ryan. His dad is his hero. He asked if there was a treatment that would make things better. Then he wondered about his own rugby. His dad said that it was a conversation they needed to have.
“Do I want to be a father in ten years, or if Charley is left to pick up the pieces, having a conversation with my son when he’s 30, going, ‘Guess what, you’ve trodden the same path as your dad’? We knew all along and we didn’t stop you and boy do we wish we had. I couldn’t live with that.”
Since the diagnosis, he’s shared the news with his family and closest friends, but not with the men he once soldiered with.
“I am not sure what their personal circumstances are,” he says. “Maybe on the back of this, people will reach out to me if they’re concerned. I think that would be the one positive. I would love that, because we could just share. It’s probably my ego as well. I had great times.
“The other thing is I probably realised the changing room hasn’t been there for me either. This idea of ‘everyone is mates’ is not the case. We were people who pulled together with a common cause, we shared some fantastic moments together but we’ve gone our different ways now. I am torn on the game, you know. [There’s] still a part of me that loves it.
“I was a kid who had a dream of playing for Wales. I got to live that dream. I captained Wales more times than anyone else until Warby [Sam Warburton] came along and I wouldn’t change,” he says and then pauses. “Actually I would change it based on my experience now. But in the moment it was amazing.”
As for the game and its response to brain injury, he is unequivocal: “It is walking headlong with its eyes closed into a catastrophic situation.”
