“I’m struggling right now,” Graeme Souness says quietly, his eyes swimming while he tries to hold back the tears as he thinks of Isla Grist, a 14-year-old girl from Inverness, and the stoicism she shows amid almost unbearable suffering. Isla has epidermolysis bullosa (EB), a rare genetic disorder which blisters half the skin covering her body. It does the same damage beneath the skin, tearing and ulcerating the insides of Isla so that there is never any respite from her pain.
I tell Souness that, before we began talking, I had been shown a few photographs of Isla’s legs. This was not done in a sensationalist or prurient way, but to help me understand what EB does to children such as Isla. Souness’s gaze glistens with distress when I say these images of devastation show skin that looks as if it has been burned.
“They take your breath away,” the 70-year-old former footballer says. “I’d describe it being like someone turning a blowtorch on you. The flesh is raw.”
He remembers asking Isla a question: “‘Are you in pain right now?’ She said yes. I asked: ‘On a scale of one to 10 how bad is the pain now?’ She goes: ‘Eleven.’”
Souness won three European Cups and five league titles with Liverpool. He also played 54 times for Scotland. Souness managed eight clubs – including Rangers, Liverpool, Galatasaray and Newcastle – and, until last month, he spent 15 years as a penetrating, if often dogmatic and abrasive, pundit for Sky. He saw himself as a hard man of football but everything is different now. Isla and EB have changed Souness.
Showing the resolve he will draw upon when swimming the Channel on 18 June with the aim of raising £1.1m to boost research into pain relief for those living with EB’s incurable disease, Souness steadies himself. He points out that Isla is far more than a victim. Intelligence and strength shine out of her in a way that makes her resemble a teacher.
“She’s taught me how lucky I am and how humble she is,” Souness says. “She’s taught me to understand real courage and compassion. Look at how courageous she is, and how she considers other people before her. Given her plight, this is another level of compassion.”
In a recent BBC interview Isla, sitting alongside Souness and her dad, Andy, who is also part of a team of six swimming the Channel, reminded us to think of others who have EB and are in isolation without the attention being paid to her. Isla then explained that her only relief came when she was watching television. She can be “distracted” then and enter “a different dimension” where she “distances” herself from the relentless pain.
“She’s as bright as a button,” Souness says, “and keeps me in order. She just tilts her head and looks at me when I’m talking nonsense. She then shakes her head and I know that’s Isla telling me to shut up. I always regard myself as mentally tough, but I’m not on the first rung of the ladder compared to her. She knows it’s not going to get any better and yet she still teaches lessons to all of us while suffering from this horrendous, nasty, evil disease.”
Five years ago, at a dinner in London, Souness met a young girl called Myra who told him about her life with EB – a condition he had never heard of. “It was just a night of being punched on the nose several times,” Souness says as he describes the shock he felt as he began to understand the consequences of EB. He decided to contact the Scottish office of Debra, the EB charity, to offer help and support. They soon sent him to meet Isla and her family in Inverness.
“We often talk about footballers living in a bubble and not caring about society,” Souness says. “That’s not true. The vast majority get involved in some sort of charity work. I’ve been around young people who are dying long before their time and you think how sad that is. But I have never come across anything as cruel as EB.
“Isla has recessive dystrophic EB which, apart from when babies die of it soon after birth, is as bad as it gets. She wakes up every day and she knows it’s either going to be a painful day or a really painful day. There’s no good day.”
The worst times for Isla come three days a week when her dressings need to be changed and she cannot help but scream in agony. “We’re nowhere near where we should be in offering the relief they need just to get through a day with the constant itch and pain,” Souness says. “Then you factor in that, when they have their dressings changed, they have to go on ketamine, diamorphine, fentanyl.”
Souness looks intently at me. “These are kids,” he says. He has cried often when talking about Isla, or being with her, and I wonder if his emotion stems from a feeling of helplessness. “Mmmm-hmmm,” he says, barely able to talk. “That’s it.”
Yet he is now doing something tangible to help. He has been in training to swim the Channel since September and, days after recently announcing his ambition to raise more than £1m, more than half that amount had been donated. His readiness to be part of a team that expects to take 14 hours to swim from England to France in icy and choppy waters is clear.
At first, however, it was very different. “There were several occasions in the first eight weeks where I thought: ‘I’m not sure I can do this. Maybe I’ve bitten off more than I can chew.’ And then all of a sudden you’re breathing out, no longer swallowing water. I’m ready now. I wish we were doing it tomorrow.”
Is there a psychological challenge in withstanding a gruelling swim? “Not for me there isn’t,” Souness says, looking like a midfield enforcer all over again.
But there have been times when, swimming against the tide, his progress has been limited. “Last Sunday I had a really long swim,” Souness says. “I went to Bournemouth pier and, on my way back, I kept looking up to breathe and seeing the same house on the coast. I kept swimming and, five minutes later, I’m still in line with that house.”
Souness laughs. “When I finally got back one of the military guys I train with said: ‘Do you know how long you’ve been in the water?’ I said: ‘An hour and a half?’ He said: ‘Two hours 15 minutes. Worse than that I was standing and watching you for 10 minutes and you’ve not moved 1ft.”
All the swimming makes Souness ravenous and, while the conversation lightens, he polishes off two scones with jam and cream. He explains how much harder it is for Andy, as he is training in far colder water in the north of Scotland “and doing it on his own”.
Andy describes Souness as “a legend in life” rather than just football. But has Souness spoken to Andy about his emotions while watching his daughter endure so much? “I don’t need to. I’m a dad. He used to carry her around on a cushion when she was born because he couldn’t hug her, he couldn’t touch her. Imagine that. I remember my mum saying to me when I had toothache as a little boy: ‘I wish I could take the pain for you, son.’ That’s what Andy and [his wife] Rachael and every other parent of a child with EB must think.”
His departure from Sky last month, after he worked as a pundit on one last Liverpool game at Anfield, is given perspective by the ordeal of the Grist family. Was it his or Sky’s decision? “Mutual. I mean, I was keen to stay another year. They thought it would be a good idea that we called it a day, gave their reasons and I accepted that and have zero complaints about Sky. I worked for them maybe 15 years solid – but it’s more like 20 years. They’ve been great for me, gave me the weekends to look forward to, the buzz of live football.”
Will he miss it? “Yes. But I’m talking to other people and we’ll go again. There’s life in the old dog yet.”
Souness hates cheating most of all in modern football. “Simulation is deceit. It’s cheating. Our football is special because it’s played in a more aggressive, open way, but we’re in great danger of becoming like lots of other leagues. We’re the No 1 league and we have some of the best players in the world. But we can’t sit on our laurels.
“For me, after 55 years in the game, the referees need to improve. VAR is a tool to make life easier for them and all it’s done is embarrass them by showing how little they actually know. I’m a great advocate that [officiating] should involve ex-pros.
“But they make it difficult. If a young professional footballer gets injured and he wants to become a referee in the Premier League it’s still going to take him 10 years. They make him go to Hackney Marshes or somewhere like that [to start refereeing] and no professional player will do that. They should be fast-tracked to the Premier League. It’s the same with VAR. The officials have time to look at it from different angles and it’s slowed down and they still get too many decisions wrong. Get some pros involved.”
Souness believes no other club can close the gap on Manchester City “in the near term. Man City have the best group of players in the history of the English game. So unless it’s [Erling] Haaland, the goalkeeper [Ederson] or [Kevin] De Bruyne coming off, every other substitution is like for like. That’s never happened before. They’re going to take some stopping.”
In Souness’s world now, taking the battle to EB rather than in the playground of football, there are far more important issues. “This fight is for ever,” he says of his commitment to help sufferers from EB, which affects about 5,000 people in the UK and 500,000 globally. “As long as I’m wanted, I’m going to fight.”
Souness pauses. “For me, it’s life-changing. It’s made me reassess large parts of my life and realise how lucky I’ve been. You realise that when you’re in the company of someone as unique as Isla. When we’ve spoken about her courage and acceptance I’ve said to Andy: ‘Do you think we’re all capable of that?’ He said: ‘I don’t know.’
“For anyone who gets close to Isla, or someone who has EB, it would be impossible not to change, to see things differently, to be more appreciative. We all take things for granted and I’m as guilty of that as the next person. I’ll try and be a better person. I won’t always succeed in that but I’ll try.”
Souness looks up again. “You think of yourself as being something in the world and then you meet Isla and you think: ‘Hmmm. There’s not very much to me after all.’ It’s a humbling experience being in her company. Humbling.”
To donate and support Isla Grist and others who have EB please go to: Give.as/DEBRAswim
