I first interviewed Rob Burrow in April 2021. Rob, by then, could no longer talk and, in his wheelchair, he could barely move. Motor neurone disease had made him a prisoner in his own body. I was anxious before we began because it seemed an impossible task. Rob, however, had spent much of his life proving that he could overcome preconceptions.
He was the rugby league giant who, despite being 5ft 5in tall and weighing a shade over 10 stone, had played almost 500 games for Leeds Rhinos, and won eight Super League championships and 18 international caps.
He dazzled and tackled opponents who were often double his weight and stood more than a foot taller than him.
Related: Rob Burrow, former Leeds scrum-half, dies at 41, years after MND diagnosis
From his earliest junior years right the way through to all those grand finals, Rob had ripped up doubts that he was too small to make it. Instead, he had left a huge mark on rugby league and become one of the most cherished players in Britain.
So Rob soon showed me how we might work together. He used a device called Eyegaze to answer my questions. Rob would pick out individual letters on a monitor and, by using his eyes, build words and then sentences. When he was ready to reply he would turn to me and his wife, Lindsey, with a smile. Lindsey and I knew that it was time for us to stop talking. In the sudden silence Rob would use his eyes to play a recording of his reply. It felt like magic to hear his voice, and that unvarnished Castleford accent, suddenly brought to life.
All this was possible because, in the months after his diagnosis for MND, he had read a book out loud so that a computer could store his voice and recreate the words he wanted to say when he was rendered speechless for ever. Despite the gravity of his condition, Rob still made me laugh.
He said that, even though he didn’t like hearing himself, it was far better that his answers came in his own accent “rather than an American robot voice like Stephen Hawking”.
So, 16 months after he had been told he had less than two years to live, Rob and I were able to talk. It was a long, slow and exhausting process for him but he was determined to complete our interview. We had three sessions together over two weeks and, as he reflected on the meaning of his life and looming death, Rob also spent many hours using Eyegaze to email me his more complex and free‑flowing replies. The interview ran as an amalgam of his “live” answers via Eyegaze and his emailed insights.
The first were much shorter, of course, but they were moving. “I appreciate the simple things,” Rob’s voice said as it boomed out of the computer. “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.”
It took him almost 10 minutes to formulate that answer – which gave me an insight into how testing life had become for Rob. And then I would wake to some extraordinary emails, which amplified those thoughts, as Rob had spent so much time on his own to add texture and depth to his replies.
“I have changed my opinion about living in the moment,” he wrote to me late one night. “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 was only 41 when he died. He and Lindsey had been together, apart from a brief break when she was at university, since they were 15. It was an immense love story that became even more moving in the often harrowing last year of his life. Lindsey’s care for him never wavered.
I have been to their home often in recent months and, as it became increasingly difficult for Rob to swallow even mashed food, Lindsey still found ways to help him. She maintained her steady source of good cheer, talking brightly or gently to Rob, even though he was too frail and exhausted to respond with much more than a “Yes” or a “No” on the Eyegaze machine.
But a flickering fire still burned inside him. He wanted to live as long as possible. Rob always said that he would accept the diagnosis of MND, a disease of almost unbearable cruelty, but that he would fight the prognosis which, on that terrible day in December 2019, told him that he could only expect to live for another 18 months or, at most, two years.
In the end, Rob lived for more than four and a half years. In that time he won awards and he was loved and exalted even more than when he played for Leeds. But, far more importantly, he loved every day that he saw his three young children – Macy, Maya and Jackson – run across to him with such love and life. They are pretty amazing kids and it says so much for Rob, and Lindsey, that they have flourished despite their dad being in the merciless grip of MND.
Lindsey messaged me last Tuesday evening to tell me that Rob had been hospitalised with pneumonia. She said she was trying to remain positive but she knew how ill he had become. It was a distressing echo of the events of last summer when she had feared that a different bout of pneumonia would hasten the end of Rob’s life. But he rallied then and was able to return home.
Related: Rob Burrow: ‘I’ve had such a wonderful life. I want to make the most of the time I have left’
His recovery made me think of what he had once told me about his rugby league career. “I played to my strengths,” Rob said. “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.”
He almost laughed when he said those words but the sound was trapped in his body.
The mighty Rob Burrow was one of the most extraordinary men I have met. He was definitely the toughest. But when I heard on Sunday that death had finally come for him, offering a merciful release after he had suffered so long, I also thought how he had told me of his good fortune.
Death was never far from our conversations but Rob’s words were always more tender than they were sombre. The breath caught in the back of my throat when he wrote this line: “There’s something beautiful about being cared for by the only girl you’ve ever loved.”
Lindsey was with Rob until the very end, showing him the love and the care that had sustained him so long.
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