Fernando Ricksen, the former Rangers and Netherlands player, has motor neurone disease. We spend time with him and his wife and find anger, sadness and humour

At St Andrew’s Hospice in Airdrie, about eight miles outside Glasgow, Fernando Ricksen is beginning to show the first signs of tiredness after answering questions with his eyes for more than an hour. As an emotional and deeply moving interview draws to a close, Ricksen is asked whether there is anything else he would like to mention in this article. After a short pause while his eyes scroll across the screen to select the words that his voice-computer reads aloud once the sentence is complete, Ricksen adds: “My wife, so that I get some points!”

There is the hint of a smile on Ricksen’s face and a sparkle in his eyes as the room is filled with laughter. The 42-year-old has clearly not lost his sense of humour, which seems remarkable in the circumstances, bearing in mind that he is in the final stages of a cruel, degenerative and terminal illness.

Ricksen, who represented the Netherlands, captained Rangers and also played for Fortuna Sittard, AZ Alkmaar and Zenit St Petersburg, has motor neurone disease (MND). He was diagnosed in October 2013 and given 18 months to live. That he is still here now, continuing to raise awareness about the illness and even cracking jokes, despite being unable to talk and barely able to move, says everything about his extraordinary courage. “I just keep going, it’s nothing special,” Ricksen says. “The people that take care of me do all the work. I just sit and tell them what to do.”

Ricksen’s biggest inspiration is Isabella, his six-year-old daughter. A framed picture of her rests on the tray-table next to the computer directly in front of him and she did a nice job of decorating the outside of her father’s wardrobe with family photographs on her last visit to the hospice a few weeks ago. Elsewhere there are cards from well-wishers dotted around the room, as well as a Rangers blanket draped across his bed and a Fortuna Sittard scarf hanging over the back of the chair next to the two-seater sofa where Veronika, Ricksen’s wife, sleeps when she is visiting.

Their family home is near Valencia. Ricksen desperately wanted to return there when he was recovering in hospital from exhaustion after flying to Glasgow for a fundraising event in October, but his deteriorating health has made that impossible.

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Although Veronika had been caring for Ricksen 24-7 in Valencia, washing, dressing and feeding him, she is not in a position to provide the round-the-clock medical attention that he now needs. St Andrew’s Hospice, a registered charity part-funded by the state, is the best place for Ricksen in that respect and is where he will spend the remainder of his life.

Isabella is far too young to understand all of that and it is difficult listening to Veronika describing the scene at the end of their first visit here. “We had an early flight back, at 7am,” says Veronika, who is Russian and met Ricksen when he was playing for Zenit. “Isabella thought that Fernando was coming home with us, so when someone came to pick us up, she said: ‘Why are we going and not Papa?’ All three of us were crying. Now, every day at home, she’s still asking when he’s coming back and that is the hardest part for me.”

Fernando Ricksen celebrates after scoring for Rangers in the 2005 Scottish League Cup final win over Motherwell. Photograph: Reuters

Veronika, who is scarred by the experience of losing her own father when she was only six, is reluctant to tell Isabella too much. “She thinks that her father is different, she thinks he’s old. And I like for now that she thinks this way. I don’t want to make it even harder for her, because she misses him a lot.

“So I don’t want to upset her and explain too deeply what is happening. She understands that he cannot talk, that he cannot walk. But I don’t think she realises that he will die.”

Ricksen has been living with that reality for more than five years. MND, which is an uncommon and incurable condition that damages the function of nerves and muscles and mainly affects people in their 60s and 70s, is always fatal. One in every two people die within two years of diagnosis and one in three inside 12 months.

Although Ricksen is not after any sympathy and has no time for self-pity – “feeling sorry for myself doesn’t help me” – there are plenty of other emotions swirling around in his mind, including anger. “I’m angry about the disease,” he says. “Angry that I am dependent on other people. I can’t do anything alone any more. I’m frustrated.”

Sitting upright in his bed with pillows supporting his neck, Ricksen takes up to a couple of minutes to complete each answer on the speech-computer that has transformed the way he communicates. His eyes act as the mouse and allow him to send WhatsApp messages, surf the web and say what he is thinking. It is incredible to watch.

Fernando Ricksen communicates via his eyes on a speech-computer. Photograph: Goffe Struiksma

Asked whether he is afraid sometimes, Ricksen replies: “It’s difficult to say that. I’m not afraid of dying. But when I can’t breathe because of the MND, I feel scared. When I’m choking, I’m afraid, yes.”

Although there are a couple of religious images in his room, Ricksen admits that he finds it hard to put his faith in God. “I respect everybody else’s views. But, personally, I don’t have much [to do] with religion, especially after being diagnosed,” he says. “I don’t think any god would give this to anyone.”

Candid and lucid with his thoughts, Ricksen is happy to talk about any subject, including euthanasia, which is legal in the Netherlands and enables people who have been diagnosed with terminal illnesses to relieve the suffering and die with dignity. “I understand why people do it but I don’t have that feeling,” Ricksen says. “I like living too much, I’m not ready to go.”

Ricksen’s zest for life and his “no surrender” attitude to MND will come as no surprise to those who knew him as a footballer. He was a warrior on the pitch and played hard off it. In Fighting Spirit, his no-holds-barred autobiography, which was written just before he was diagnosed with MND, Ricksen admits he “wanted to rock and roll all night and party every day”. He lived life in the fast lane, spent money like there was no tomorrow and, by his own admission, may have “overdone it a bit with the booze, the drugs, the girls”.

A right-back by trade, Ricksen could play too. He won seven trophies with Rangers and another four with Zenit. As for the Netherlands, he would almost certainly have won more than 12 caps had he not got so drunk at a strip club in Minsk in 2003, after a 2-0 win over Belarus, that he ended up kicking in two hotel room doors. Two because Ricksen was confused about which room he was staying in and took Ruud van Nistelrooy’s door off its hinges before his own. He gathered his bags just in time to make the team bus but never played for his country again.

Fernando Ricksen, front row centre, with the Netherlands before a game against Argentina in 2003. Photograph: Christof Köpsel/Bongarts/Getty Images

That story is one of many involving Ricksen and alcohol during his playing days and explains why some people in the Netherlands assumed he had been drinking again when he seemed to be slurring his words during a live television appearance in October 2013 to promote the release of his book. After a couple of questions, Ricksen was asked by the presenter why he was speaking so slowly. Overcome with emotion, Ricksen dropped the bombshell that he had just been diagnosed with MND.

Vincent de Vries, Ricksen’s ghostwriter and loyal friend, was in the audience that night. “The first 10 seconds, you saw on Twitter: ‘Look at that arsehole, he’s still drunk.’ Then when Fernando said: ‘I’ve got MND,’ it totally changed. He became the hero,” De Vries says. “It was the TV moment of the year in Holland.”

Ricksen refuses to see himself as an inspirational figure and believes that only one detail has changed for the public when it comes to how he was viewed as a footballer and how he is perceived now. “I think that they thought I was crazy. Now I think that they think I am the crazy guy with MND.”

His battle with MND has been public from the beginning and continues to be, despite his poor health. The night after our interview at the hospice, Ricksen appears at a fundraising evening at Tradeston Ex-Servicemen’s Club, which is about half a mile from Ibrox. It seems amazing to think that Ricksen feels strong enough to go out and mix with so many people on an evening, yet he sounds genuinely excited about the prospect. He says he still “loves the attention” and compares the buzz he feels before the event to “playing in a cup final”.

Ricksen arrives just after 8pm and, as Veronika brings him into the room in a wheelchair, 250 people get to their feet to cheer and applaud, including Gregory Vignal and Nacho Novo, two of his former Rangers teammates. “I always say that I would like to have 11 Fernando Ricksens on my team,” says Novo. “Look at him, still fighting.”

Fernando Ricksen, pictured last year with his daughter Isabella. Photograph: Goffe Struiksma

Ricksen has brought his voice-computer with him and prepared a few stories that are met with howls of laughter. One is about the day he threw John McClelland, the Rangers chairman at the time, into a swimming pool in Athens on the eve of a Champions League game. Another is about the morning he turned up for training in a helicopter to avoid being late, and the third tale revolves around a tequila-fuelled night out in Glasgow that ended with him waking up “butt naked” with a woman he didn’t know and in enemy territory. “She told me to look out of the window; I couldn’t believe what I saw: Parkhead!”

It is all good fun and Ricksen seems to be enjoying himself. There is a buffet followed by an auction that raises several thousand pounds, as well as the chance for everyone to have their photo taken with him – Ricksen is more than happy to oblige as the queue snakes halfway around the room.

At one stage in the evening a man gets on the microphone and reveals he is a Celtic fan, which seems like a dangerous thing to do in a room full of Rangers supporters. “Fernando, you were a thorn in my side as a player,” he says. “But I have the utmost respect for you and that’s why I am here tonight. You are an inspiration to me.”

With the time approaching 11pm and only the raffle still to take place, Ricksen leaves to the soundtrack of Fernando by Abba and to a mixture of more applause and a few tears. The evening has been a success – and it needed to be. On top of everything else, Ricksen has no money. “We only have his pension, €1,300 [a month] – that’s all we’re living on,” says Veronika. “That’s why he keeps making these events.”

Fernando Ricksen at an ex-servicemen’s club in Glasgow last week with his former Rangers teammates Nacho Novo, right, and Gregory Vignal. Photograph: Jamie Williamson

It is another sad layer to a tragic story. Ricksen never planned for a rainy day as a player, let alone the sort of storm that he has been through since 2013. Apart from the property in Spain, which he co-owns with Graciela, his first wife – the two are involved in a bitter and long-running legal dispute over their finances – he has nothing to show for the millions of pounds he earned as a professional footballer. His flamboyant lifestyle saw to that. “Yes, I burned a Mount Everest of money,” writes Ricksen in his book, “but at least I had a good time doing it.”

There were plenty of hangers-on in those days, in stark contrast to now. Other than De Vries, who developed a close relationship with Ricksen when working as his ghostwriter and has been in contact with him pretty much every day since, and Roy Knez, who is a really good friend from the Netherlands and always offers his support, there are not many people regularly on the scene. “He doesn’t have so many friends, I guess,” says Veronika, who politely requests not to discuss the reason for the lack of contact between Ricksen and his wider family.

When it comes to the football world, De Vries says he can count on one hand the number of former teammates who are genuinely there for Ricksen. Some have visited the hospice, including Marco Negri, the Italian striker who playedfor Rangers. Asked how he feels when he sees people such as Negri, Ronald de Boer and Jorg Albertz, who all came by in January, Ricksen says: “It’s a mixed feeling. I’m always happy to see everyone. But it also reminds me of what I can’t do any more.”

Ricksen still enjoys watching football on television and he has a special relationship with a couple of his former clubs. Fortuna Sittard hosted a testimonial game in 2014, named a stand after him and unveiled a statue last year. Rangers have also done their bit. They staged a benefit match in January 2015, when there was barely a dry eye among the 42,000 people in the stadium, and Ricksen has been invited back many times since. “They are super. If I call them for tickets, they arrange everything for us,” says De Vries.

The one thing that nobody can do anything about, however, is Ricksen’s health and that has been the case ever since he was diagnosed. “I’d never heard of MND,” says Veronika, who married Ricksen six months after they received the shattering news. “I was praying that it was not cancer.But now … I can’t say that I could wish that he had cancer, but MND is something that you would never wish to anyone. It’s such a horrible thing. At least with cancer you are capable of talking, you can still move and you can be in remission. With MND, there is no chance.”

Ricksen knows that is the case, too. He says that those people who think he will be free from suffering and in a better place when the awful day comes are “absolutely right”. Asked whether he thinks about that kind of thing sometimes, and the peace that the end will bring, Ricksen replies: “No, not really. I don’t want to look forward too much. I just try to live day by day.”

Donate for Fernando Ricksen and help him to fight motor neurone disease at https://fernandoricksenfoundation.org/

Read more: www.theguardian.com