When your life has been football — playing for 20 years, then coaching and managing for 20 years — you grow accustomed to not displaying much emotion. Even though that life has brought me into contact with many people whose personal challenges are heartbreaking.
But I have to confess that it’s not easy to put the emotion aside when I’m in the company of the young woman I appeared with in a TV studio this week.
I’ve known Isla Grist for five years now and come to learn a lot about the dreadful condition she is living with. I’ve also grown accustomed to her mischievous wit and sense of fun. But every time we meet she will say something that affects me deeply.
When we appeared on BBC Breakfast, discussing the skin condition which makes every day a huge challenge for her, she said in a matter-of-fact way that there were ‘other people with challenges too’. Typical Isla. Always making light of the cards she’s been dealt and the difficulty of getting through every day.
She’s 14 and has Epidermolysis Bullosa (EB), a life-threatening skin condition also known as ‘butterfly skin’, which causes her body to blister and tear. It means hours of applying creams and, three to four times a week, the pain of changing her dressings.
But it’s not easy to put the emotion aside when in the company of brave, inspirational Isla Grist
Grist lives with Epidermolysis Bullosa (EB), a life-threatening condition also known as ‘butterfly skin’ – that’s why Mail Sport columnist Graeme Souness (left) is swimming the English Channel
We’re using the number I used to wear, 11, to create a fundraising target of £1.1m for the swim
I can say this without any doubt at all: I’ve never witnessed a crueller condition. I’m a vice-president of the charity Debra, which is raising awareness of the condition and fundraising — and which will soon be lobbying the Government for help.
I’m sad to say that we currently have no Government help for the children who are suffering with this condition.
It’s also been my privilege to meet Isla’s mother and father, Rachael and Andy, at their home in Inverness. There are times when Andy and I talk, as two fathers, and my heart breaks for him, carrying that desperation for a way to make his daughter’s life that bit better.
I had quite a serious operation 30 years ago, and yet have been able to enjoy exactly the same quality of life that I had before it. But for people like Isla, the quality of life is miserable.
She’s living with a recessive disease, which means she must take a cocktail of the strongest of drugs — Diamorphine, Fentanyl and Ketamine — on a daily basis to try to get some pain relief.
I won’t see a cure for this genetic condition in my lifetime. To develop, trial and market a drug, that will take the best part of 20 years. But there are some very intelligent scientists out there, working to repurpose 20 drugs already on the market for conditions like psoriasis and eczema.
The cost of doing so is £500,000 per drug. So multiply that figure by 20 to get a sense of the money needed. To help make that possible, I will be participating in a cross-Channel relay swim next month. Fortunately, I live on the south coast of England and have access to the sea.
I’ve been swimming with some friends who are ex-military, who have pushed me hard over the last nine months. I can’t begin to tell you what heading into the water at 6.30am in January and February has been like, in the pitch black, with a green flashing light on my head.
These guys are the best of the best in our military and I’m hearing the military jargon from them. When they tell me, ‘We’re wet at 6.30’ they mean you have to be in the sea at that hour. If you’re 30 seconds late, they just swim off without you.
The woman in our group, Steph, is an excellent swimmer and an extremely competitive member of the team.
They’re all far better swimmers than I am and leave me behind in our training sessions — to the point last Sunday where I lost them completely. Or rather, they lost me (they’re supposed to be looking after me!)
When your whole life has been football, you grow accustomed to not showing any emotion
Instead of us doing an hour, I was in the water for two hours, 15 minutes and was going exactly nowhere towards the end because the current had changed. I noticed one of the team waving to me from the shore, to come in.
‘You’ve not moved one foot in the last 10 minutes,’ he told me, when I finally reached him. All this is a bit like being under the control of Ronnie Moran, our coach in my playing days at Liverpool. I’m loving every minute.
Since I talked about the Channel swim, some people have been under the impression that I’m going to do the entire 21 miles myself and that’s certainly not the case.
I’m part of a six-person team and am expecting to be in the water for three to four hours. But we’re hoping this challenge will raise substantial funds for those clinical drug tests. We’re using the number I used to wear — 11 — to create a fundraising target of £1.1m for the swim.
The response since Isla and I spoke at the start of the week has been wonderful and I hope you might be able to help in some way, via the link below. I would value your support, though it is, of course, my courageous young friend you will be helping.
https://donate.giveasyoulive.com/fundraising/debraswim
Eddie Howe has worked wonders at Newcastle this season – he’s my Manager of the Year
Howe has worked wonders – he’s my manager of the year
It’s no surprise where Manchester City find themselves as the last weekend of the season comes around. With the best group of players in the history of English football — and the money they’ve spent — I would have expected them to be champions.
But I would argue that Newcastle United’s Eddie Howe has to be in the reckoning for Manager of the Year. Who are the big surprises of this year? This Newcastle team.
It’s not just about their top-four finish but the manner in which they’ve achieved it. They’ve gone out there all guns blazing every week, playing an excellent, ambitious brand of football.
I remember being really struck with them right back in August, when they went to Anfield. Their style of football said to Jurgen Klopp’s team: ‘Come on, we’re going to take you on at your own game.’ Not many teams say that to Liverpool at Anfield.
Something told me on that occasion that Newcastle were going to be ambitious. They weren’t going out with some cautious counter-attacking plan. It was, ‘We’re going to try to outgun you, we feel that we can outscore you’. That’s an incredibly admirable attitude, which they’ve now been rewarded for.
We also have to look at what Eddie has done with players who have performed beyond what we thought was their level. Miguel Almiron and Joelinton, to name but two.
You might well have said in the past that they were not good enough to play in the Premier League. But that’s not been the case this year. You can say of almost every player in that squad, that Eddie has made them better. The challenge now is the expectation level.
Newcastle will go out and spend more this summer and will no longer be the outsiders, barging their way into the top four. Extra pressure and scrutiny will come, as it does for all the top sides. But for now, Newcastle can reflect on a fine contribution to another wonderful season for our football.
I remember being struck with them in August, when they went to Anfield to face Liverpool
Howe has also massively improved players like Joelinton (centre) and Miguel Almiron (right)
I’ve had a meeting with James Bisgrove, the new chief executive at Rangers, about the prospect of me going back in some capacity, to help the club.
Given that I’ve been a Rangers supporter since I was a boy, if I thought I could be of help in any small way, it’s something I’d think very seriously about.
