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I first interviewed by Rob Burrow in April 2021. By then, Rob could no longer speak and could barely move in his wheelchair. Motor neurone disease had made him a prisoner in his own body. I was anxious before we started because it seemed like an impossible task. However, Rob had spent much of his life proving that he could overcome prejudice.
He was the giant of rugby league who, despite standing 5ft 5in tall and weighing just over 10 stone, had played almost 500 games for Rhinos in Leedsand won eight Super League championships and 18 international caps.
He dazzled and handled opponents who were often twice his weight and stood more than a foot taller than him.
From his earliest teenage years to all those grand finals, Rob had torn apart doubts that he was too young to succeed. Instead, he left a huge mark on rugby league and became one of the most highly regarded players in Britain.
So Rob soon showed me how we could work together. He uses a device called Eyegaze to answer my questions. Rob would pick out individual letters on the monitor and use his eyes to form words and then sentences. When he was ready to answer, he would turn to me and his wife, Lindsey, with a smile. Lindsay and I knew it was time to stop talking. In the sudden silence, Rob used his eyes to play a recording of his response. It felt like magic to hear his voice and that unadorned Castleford accent suddenly brought to life.
All this was possible because in the months after his MND diagnosis he had read a book aloud so that the computer could store his voice and recreate the words he wanted to say when he was rendered speechless for good. Despite the seriousness of his condition, Rob still made me laugh.
He said that although he doesn’t like listening to himself, it’s much better if his answers come in his own accent, “rather than an American robot voice like Stephen Hawking.”
So, 16 months after he was 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 pondered the meaning of his life and impending death, Rob also spent many hours using Eyegaze to email me his more complex and free-flowing responses. The interview was conducted as an amalgam of his “live” responses via Eyegaze and his emailed insights.
The first ones were much shorter, of course, but they moved. “I appreciate the simple things,” said Rob’s voice booming from the computer. “I don’t have a bucket list because I’ve had such a wonderful life. But I want to make the most of the time I have left.”
It took him nearly 10 minutes to formulate that response – which gave me an idea of what a trial life had become for Rob. And then I would wake up to some extraordinary emails that reinforced these thoughts, since Rob had spent so much time alone to add texture and depth to his responses.
“I’ve changed my mind about life right now,” he wrote to me late one night. “Since my diagnosis, I see the moment for what it is and find meaning in it. When the kids are playing in the garden or just having fun, it makes me appreciate the moment. One day before I know it, I won’t be able to enjoy these eternal moments. When I tell Lindsay and the kids that I love them, you never know how far away you are from telling them that for the last time.”
Rob was just 41 when he died. He and Lindsay had been together, except for a short break when she was at university, since they were 15 years old. It was a tremendous love story, made all the more poignant in the often harrowing final year of his life. Lindsay’s care for him never wavers.
I had been at their home a lot in recent months, and as it became more and more difficult for Rob to swallow even pureed food, Lindsay still found ways to help him. She kept up her constant source of good cheer, talking cheerfully or gently to Rob, even though he was too frail and exhausted to answer much more than “Yes” or “No” to the Eyegaze machine.
But a flickering fire still burned within him. He wanted to live as long as possible. Rob has always said he would accept the diagnosis of MND, a disease of almost unbearable cruelty, but that he would fight the prognosis which, on that fateful day in December 2019, told him he could only expect to live another 18 months or . maximum two years.
After all, Rob lived for more than four and a half years. He was winning awards at the time and was loved and praised even more than when he was playing for Leeds. But much more importantly, he loved every day that he saw his three young children – Macy, Maya and Jackson – running to him with such love and life. They are pretty amazing kids and it says so much about Rob and Lindsey that they have thrived despite their father being in the relentless grip of MND.
Lindsey texted me last Tuesday night to tell me that Rob had been hospitalized with pneumonia. She said she tries to stay positive but knows how sick he has become. It was an alarming echo of the events of the previous summer, when it was feared that another bout of pneumonia would hasten the end of Rob’s life. But then he pulled himself together and managed to return home.
His recovery made me think about what he had once told me about his rugby league career. “I played to my strengths,” Rob said. “I had speed and agility. I wasn’t trying to be something 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 caught in his body.
The mighty Rob Burrow was one of the most extraordinary men I have ever met. He was definitely the toughest. But when I heard on Sunday that death had at last come for him, offering a merciful release after he had suffered so long, I also thought of how he had told me of his good fortune.
Death was never far from our conversations, but Rob’s words were always more gentle than dark. My breath caught in 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 care that had sustained him for so long.
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