I First interview with Rob Burrow in April 2021. Motor neurone disease made him a prisoner of his own body. I was anxious before we started because it seemed like an impossible task. However, Rob has spent much of his life proving that he can overcome preconceptions.
He was a giant of rugby league, playing almost 500 games for Leeds Rhinos, winning eight Super League titles and 18 caps despite standing 5ft 5in and weighing over 10 stone.
He dazzled opponents and tackled opponents who were often twice his weight and more than a foot taller.
From his earliest days in third grade all the way through to all finals, Rob had eradicated any doubt that he was too young to make the finals. Instead, he left a huge mark on rugby league and became one of Britain’s most respected players.
So Rob quickly showed me how we could work together. He answered my questions using a device called Eyegaze. Rob would pick out individual letters on the monitor and then use his eyes to build words and then sentences. When he was ready to answer, he would turn to me and his wife, Lindsay, with a smile. Lindsay and I knew it was time for us to stop talking. In the sudden silence, Rob would play the recording of his responses through his eyes. Hearing his voice felt like magic, his earthy Castleford accent suddenly coming to life.
This was all possible because in the months after he was diagnosed with motor neurone disease, he read a book aloud so that a computer could store his voice and record it when he was never speechless. to reproduce what he wanted to say. Despite the severity of Rob’s condition, he still makes me laugh.
He said that although he didn’t like hearing his own voice, it was much better to answer in his own accent “rather than an American robot voice like Stephen Hawking’s”.
So, 16 months after he was told he had less than two years to live, Rob and I were finally able to talk. It was a long, slow, and tiring process for him, but he was determined to complete our interview. We had three sessions over two weeks, and as Rob reflected on the meaning of his life and his looming death, he also spent a lot of time using Eyegaze to email me his more complex, fluid responses. This interview combines his “live” answers via Eyegaze with insights he sent via email.
Of course, the first one is much shorter, but they are moving. “I appreciate simple things,” Rob’s voice came from the computer. “I don’t have a bucket list because my life is great. But I want to make the most of the time I have left.
It took him nearly 10 minutes to come up with this answer – which gave me an idea of how Rob’s life has been tested. I would then wake up to some extraordinary emails that amplified these ideas because Rob himself spent so much time adding texture and depth to his responses.
“I have changed my mind about living in the present,” he wrote to me late one night. “Since my diagnosis, I have seen the moment for what it is and found meaning in it. It makes me cherish the moment when the children are playing in the garden or just having fun. One day, before I knew 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 close it is to telling them the last time.
Rob was 41 when he died. He and Lindsay had been together since they were 15, except for a brief breakup when Lindsay was in college. Even more touching. Lindsay’s concern for him never wavered.
I’ve been visiting their home regularly in recent months, and although Rob has become increasingly difficult to swallow even mashed food, Lindsay still finds ways to help him. She maintained a steady source of joy, talking brightly and tenderly to Rob, even though he was too weak and exhausted to answer “yes” or “no” on the Eyegaze machine.
But there was still a flickering fire burning inside him. He wants to live as long as possible. Rob always said he would accept the diagnosis of MND, a cruel disease that is almost unbearable, but he would fight the predictions that, on that terrible day in December 2019, told him he would have no more to live. 18 months or, up to two years.
In the end, Rob lived for more than four and a half years. During that time he won awards and was loved and revered even more than when he played for Leeds United. But more importantly, he loved seeing his three children — Macy, Maya and Jackson — running to him every day, full of love and life. They are amazing children and it means a lot to Rob and Lindsay that they are still thriving despite their father’s ruthless control of MND.
Lindsay texted me last Tuesday night to tell me that Rob was in the hospital with pneumonia. She said she tried to keep a positive attitude, but she knew how sick he was. It was reminiscent of what happened last summer, when she feared another bout of pneumonia would hasten the end of Rob’s life. But he then picked himself up and was able to return home.
His recovery reminded me of something he once told me about his rugby league career. “I played to my strengths,” Rob said. “I have speed and agility. I’m not trying to be anything I’m not. I never had any doubts. I’m tougher than I look.
He almost laughed when he said this, but the sound was trapped inside him.
The mighty Rob Burrow is one of the most extraordinary men I have ever met. He’s definitely the toughest to deal with. But when I heard on Sunday that death had finally come to him, a merciful relief after suffering for so long, I also thought about how he had told me of his good fortune.
Death was never far away from our conversations, but Rob’s words were always more tender than somber. My breath caught in my throat as he wrote these words: “It’s a wonderful feeling to be cared for by the only girl you’ve ever loved.”
Lindsay stayed with Rob until his final moments, showing him the love and care that sustained him for so long.
