Rob Burrow can no longer talk and yet, on a rainy bank holiday evening at home in Pontefract, he answers another of my questions about life and death. It feels almost magical as his familiar Yorkshire voice fills the room even though Burrow is smiling gently rather than moving his lips. “I don’t think you ever know your inner strength until you get told you are dying,” says the former Leeds Rhinos rugby league international who is a prisoner in his own body. “I would never have known I could be this positive when getting the news.”
The 38-year-old, who won eight Grand Finals and 20 international caps during a long and memorable career, has a ravaging form of motor neurone disease. He and his wife, Lindsey, who has been with him since they started going out at the age of 15, received the shattering diagnosis in December 2019. The prognosis was bleak because Burrow was told his life expectancy, while declining rapidly from an incurable disease, would be unlikely to stretch beyond two years.
Burrow’s mind is as sharp as ever and he uses a piece of technology called Eyegaze to respond. His eyes identify individual letters on the screen and then, slowly, he builds words to formulate an answer. When he is ready Rob turns to us with a smile. It is his way of letting Lindsey and I know that, while we have been yakking away, he can reply. Rob fixes his gaze on the send button and his texted answer is spoken by an approximation of his voice – recorded during the earliest months of his illness. He read a book aloud so that the technology could create a memory bank of words said by him.
Rob points out wryly that, even though he doesn’t really like hearing himself, it is far better that it is his accent “rather than an American robot voice like Stephen Hawking”.
Lindsey sits with us as we approach the end of another moving interview. We have shared an unexpected amount of laughter as this extraordinary couple set me at ease despite Rob’s harrowing illness. Over the past few weeks we have found a pattern for our interviews. While Rob methodically types his answers, Lindsey chats to me. It is like conducting two contrasting interviews simultaneously but they make it easy. “Oh yes, he’s used to me talking every minute anyway,” Lindsey says with a laugh when I ask if Rob can concentrate while we talk.
Rob explains that his darkest period occurred soon after he lost the ability to talk late last year just as the second lockdown gripped the country. He felt isolated in his stricken body. But his new aid has transformed him.
“It has completely changed my life,” he says. “I can express myself again.”
Lindsey says the eye-tracking device has been “such a lifeline because it’s Rob’s only means of communication. Simple things are now possible, like being able to ask the kids: ‘How’s your day at school been?’ Or he says: ‘Lindsey, can I have a coffee?’ It’s lovely for me and the kids. They hear him saying that he loves us and it’s totally Rob. So communication is possible again – which is vital.”
That communication has been deepened by a book about Burrow’s life which will be published in August. Written by Ben Dirs, the accomplished ghostwriter, the manuscript is currently being read by Rob. I have read it and Dirs has captured Rob’s old voice, and good cheer, while documenting the two love stories framing his life. The first is a sporting story. It charts the romantic tale of how tiny Rob Burrow conquered brutal old rugby league against all odds, and helped turn Leeds into a powerhouse as they dominated the sport with homegrown stars who came up through the academy with him.
The second love story is between Rob and Lindsey. It is full of compassion, tenderness and love. “I got sent the first 30,000 words,” Lindsey says, “and I couldn’t put it down. It was way after midnight and I thought: ‘Gosh, I really need to get to bed here.’ It brought back so many memories. I keep hearing Rob laughing while he’s reading.”
The book helped me understand how much Rob still wants to be treated normally. And so even after we talk about difficult subjects he tells me about his enduring love of The Office and how he watched Line of Duty with Lindsey while “trying to work out who ‘H’ was before the final episode – to no avail. I loved watching it with Lindsey because she never has a spare minute.
“Lindsey has taken care of me and mothered me as if I was one of the kids. I absolutely hate sympathy and, while I appreciate the empathy people feel for me, I want to be as normal as possible. Having said that, how can it be normal for Lindsey when she has changed from my wife to my full-time carer? The stuff Lindsey does for me shows her true love. I hope she knows I’d do the same for her – even if I’d do a much worse job.”
It has felt strangely natural to reflect on the inevitability of death not long after Rob has grinned at the revelation that when one of his old teammates, Barrie McDermott, the imposing former prop, visits him he ends up laughing so much that he cannot stop farting at the same time.
In a similar way we have considered the courage of Lindsey, who remains so bright and engaging while being his full-time carer, a part-time physiotherapist as well as a mum to their three children under the age of 10. We have discussed the possible links between MND and the 30 concussions Burrow suffered during his career and relived the adversity he overcame as a scrum-half who, standing 5ft 4in and weighing under 10 stone, had to outwit and tackle opponents sometimes double his weight and over a foot taller than him.
I also receive longer and more textured responses from Rob when Lindsey emails his answers. “I have changed my opinion about living in the moment,” he writes one evening. “Since my diagnosis I see the moment as it is and find meaning in it. When the kids are playing in the garden or purely having fun, it makes me appreciate the moment. One day, before I know it, I won’t be able to enjoy these timeless moments. When I tell Lindsey and the kids I love them, you never know how far you are from telling them that for the last time.”
Rob’s voice fills the room again now. “I appreciate the simple things. I don’t have a bucket list because I’ve had such a wonderful life. However, I want to make the most of the time I have left.”
Days after the diagnosis, a distraught Lindsey started crying at a cash machine when she couldn’t remember her pin number. Rob urged her to live in the moment and savour every day they had left together. If Lindsey felt down he would join her in a slump of depression. But if they both considered how lucky they had been for so long, it would be easier to make the most of the time they could still share.
Rob also introduced a no-tears policy as an affirmation of everything good that remained in their changed lives. He told Lindsey that, while he accepted the hard truth of the diagnosis, he would fight the prognosis and try to live for longer than the doctors predicted.
“That sums up Rob’s mentality,” Lindsey says. “He was a tower of strength and I thought: ‘If Rob can be positive about this, we’ll make the best of it.’ I also remembered my line manager at work telling me she had lost a family member through a heart attack and they hadn’t had time to say everything they wanted to say or to make more memories together. We do that here every day.”
Earlier this afternoon, on a miserable bank holiday in Yorkshire, Lindsey had helped Rob into the car so they could take the kids swimming. “I loved it,” Rob tells me. “Just to see the kids having fun and a bit of normality made it feel like it used to be.”
Lindsey seems to do the work of three people during every long day which starts for her at 5.30am and ends near midnight. But, as she explains, “It keeps your mind off things. When I sit down on the bad days and think: ‘Actually this is happening, this is our life,’ it hits you. But the kids keep us busy and there’s never a dull moment, is there, Rob? I’d much rather that than feeling sorry for myself.
“There are days when you think: ‘Why me?’ But then I think of Rob and that really puts it into perspective because I’m able to physically do what I want. I can still go to the gym on my own for an hour at 6 am, I can play with the kids, I can do my work as a physio while being Rob’s carer. I look at Rob and think: ‘What have I got to moan about when he stays so positive?’ What I have to do is nothing compared to what Rob goes through on a daily basis.
“Rob is such a wonderful man and I am the person I am because of him. So the good absolutely outweighs the bad. Looking back we had everything. We had three beautiful, healthy children, good jobs and nice holidays. Life was perfect. But what happened doesn’t change my love towards Rob or how I feel about him. It just puts me in a different role. I’m in more of a carer’s role now. But I still love every minute we have together.
“Not so long ago I asked Rob: ‘If you could go back and we were told that rugby had a part to play in you getting MND, would you change anything?’ He said absolutely not. That was really reassuring for me because I knew Rob was in a good place and, despite his struggles, he didn’t have any regrets.”
I ask Rob if he still likes to watch rugby league? “I enjoy watching the Rhinos on TV but I sometimes wonder: ‘How the heck did I compete for so long?’ But I don’t criticise them because everyone can see a gap on the TV but I know how hard it is to do with a split-second on the field. It makes me wonder, in my current situation, how I ever could do it. But it is all so insignificant now.”
How would they feel if their little boy Jackson, who is not quite three, plays rugby one day? As Rob types, Lindsey says: “He’s more interested in kicking a football at the moment but I think he’s got Rob’s sporting genes. I would probably say no, just because it was bad enough seeing Rob play and there’s always the question at the back of my mind: ‘Is [MND] sport-related?’ I remember seeing how much Rob’s mum and dad worried when he was playing. I’ll support the children whatever they do but it wouldn’t bother me if Jackson was a ballet dancer.”
Rob’s doctors have stressed that more scientific research needs to be done to establish whether there are proven links between rugby-induced concussion and MND. Lindsey has medical knowledge and she has worked with MND patients for years. Does her gut tell her there is a connection? “It’s really difficult. There are many people who have never played sport who get the disease. But maybe there is a link. That’s why it’s vital we get more research done. Rob puts it down to bad luck. He had a wonderful career and he loved playing rugby. I know all the great benefits of sport so I wouldn’t want to put anybody off playing.
“But I always worried about the long-term effects of concussion. He played games and he was not able to remember scoring tries or he didn’t know the score afterwards. So I worried about Rob getting some form of dementia or Alzheimer’s – which is irrelevant now.”
Rob has finished typing. His voice echoes around us: “I would love Jackson to play and I’d support him whatever path he chose.”
“I’ll put the ballet on hold,” Lindsey says.
One of his autobiography’s central themes is how Rob was doubted for so long by people who thought he was far too small to make it in rugby league. Of course, in later years, his speed, intelligence and bravery made such doubts redundant. “I played to my strengths,” Rob explains. “I had speed and agility. I didn’t try to be anything I wasn’t. I never had any doubts. I’m tougher than I look.”
I imagine the droll way Rob might have delivered that line 18 months ago. But was he scared on the field? While Rob begins typing, as if diligently doing his homework, I ask Lindsey if she felt fear watching him play. “Definitely. Rob’s small stature made me worry and, being a physiotherapist, I understood the injuries. I was always relieved after a game when he was still in one piece, a bit battered and bruised.
“Seeing him knocked out in a World Cup game shook me. Just seeing him on the floor, almost looking lifeless, was hard. And remember, Rob, when you broke your collarbone? You walked off the pitch but it was difficult. Rob was always so tough and it never fazed him. You need that mentality when you’re up against players twice your size. Rob was fearless but I know the impact his body took over the years.”
Rob’s answer is ready. “I was afraid of failing,” he says, “but never scared of playing.”
We become nostalgic when I ask Rob which game he would watch again if he could relive only one last match. “The 2011 Grand Final. I can’t believe what I did.”
In another testing final against St Helens, Burrow receives a pass just over the halfway line at Old Trafford. Instinctive brilliance bursts out of him as he steps off his left foot and arrows towards one of the big Saints forwards before zipping around him. He avoids another heavy tackle, sidesteps Saints’ full-back Paul Wellens, putting him on his backside, and skips past an attempted tap-tackle. Four defenders close on him from various angles but Burrow flies to the line and dives over for one of the great Grand Final tries.
He is engulfed by his ecstatic teammates. It is one of the sweetest moments of his life and the adulation the other players shower on their little scrum-half has underpinned their love since they understood he was dying. His captain that day was, as usual, Kevin Sinfield.
When Sinfield ran seven marathons in seven days last December, on behalf of the Burrow family and the fight against MND, Rob said: “We all need a friend like Kevin.”
I tell Rob how, when I interviewed Sinfield a week after his seventh marathon, I was impressed all over again. If it was down to me, I joke, I would sack Sinfield from his position as director of rugby at Leeds Rhinos and make him prime minister. “He’d do a better job than Bo-Jo,” Burrow replies, the laugh muffled inside him.
That depth of friendship, which he has with so many of his former teammates, means Rob is relieved he resisted offers to leave Leeds. He remained a one-club man right until the end for he was an academy coach when the disease changed his life. “I am so glad I did not move. I would have been disappointed with myself because look at the way the club helped me through the disease.”
Even when I remember the shimmering blue streak of Burrow in that 2011 Grand Final, and contrast it silently with the motionless man in the damaged shell of his body, Rob and Lindsey offer a fresh perspective. Lindsey tells me about Dr Agam Jung, the neurologist at the Leeds Clinic which helps him. In Rob’s book, Dr Jung explains that her MND patients want “to find peace in their heads”. She says their acceptance of death means that “our clinic is not morbid or morose. It’s a happy place.”
Dr Jung says Rob is a favourite patient because of his positivity and spirit, and also because he has done so much to raise awareness of MND. People come to her clinic and say they think they have “Rob Burrow’s Disease”. It echoes how, for many decades in the US, MND was called “Lou Gehrig’s Disease” – after the great baseball player who was struck down in 1939.
Rob also helped Dr Jung in a way he did not understand at first. His sporting profile meant she was invited to speak on television about Rob and MND. It was almost as if her new platform boosted her in the eyes of previously sceptical colleagues. Her ethnicity, and the fact she was a woman, finally mattered less than her deep expertise in MND.
“Having listened to Dr Jung explain how much it meant to her,” Rob says, “I completely empathise. I think about a stereotypical doctor on TV and I struggle to remember how many women are put in front of a camera. It makes me feel privileged for it to mean so much to her.”
A dark rain falls outside but there is still so much light here. “There are times when I think about death,” Rob admits, “but I’m not afraid of dying. I only hope that there are ghosts so I can watch my family grow up and still protect them. Although I won’t be there in body I will never leave their side in spirit.”
Lindsey will soon settle Rob into his special hospital bed, which can be raised, as it is hard for him to lie on his back. I imagine their darkened house and both of them trying to find sleep at the end of another draining day. A tug of sadness soon lifts as I remember what sustains them.
“There’s something beautiful,” Rob says, “about being cared for by the only girl you’ve ever loved.”