Take Care

Early on the morning of Saturday 13 January 2024, I checked my email account and zeroed in on a message from Lindsey Burrow. A few months had passed since our last exchange and I was keen to hear how she and her husband, Rob, were feeling because their lives had been turned inside out in December 2019. Rob, the great former rugby league player, had been diagnosed then with motor neurone disease.

Lindsey's email carried a one-word title in the subject box: Book

I was intrigued and opened the message to read these words which had been sent at 11:36 the previous night:

Evening Don

I hope you don't mind me emailing you out of the blue. I trust this email finds you well.

In confidence, I have been asked if I would consider doing a book. My initial response was 'no, who am I to write a book?' but having had time to think about it (and with some encouragement from Rob), I have had a change of heart. Primarily because if sharing my story helps one other person, then that would make it all worthwhile.

The reason for my email is that I wanted to ask if you would consider being the ghost writer. I know this is a big ask, and I can only imagine how busy you are, but I have such admiration for your work that I would love the opportunity to work with you. Out of all the interviews Rob and I have done, hand on heart, yours stands head and shoulders above the rest.

There is absolutely no pressure to say yes and I completely understand if this is something that you do not want to commit to, however I could not not ask you.

Kindest regards,
Lindsey

It was a lovely email and, even more so, I was already gripped by Rob and Lindsey's story. I had first spoken to them in April 2021 when I began a series of interviews which I hoped would enable me to write a feature for The Guardian that would do justice to their courage and resolve. Rob could no longer talk but his mind was as sharp as ever and he used a piece of technology called Eyegaze to communicate. His eyes would identify individual letters on the screen and then, slowly, he built words to formulate an answer.

When he was ready Rob turned to us with a smile. It was his way of letting Lindsey and I know that, while we had been yakking away, he was ready to reply. Rob fixed his gaze on the send button and his texted answer was spoken by an approximation of his voice - recorded during the earliest months of his illness.

Rob said wryly that, even though he didn't really like hearing himself, it was far better to use his own accent “rather than an American robot voice like Stephen Hawking”.

We did numerous audio interviews and Rob's voice expressed so many insights into life, death and his illness. It felt almost magical as his familiar Yorkshire voice filled the room even though Rob was smiling gently rather than moving his lips. He was a prisoner in his body but he told us that: “I don't think you ever know your inner strength until you get told you are dying. I would never have known I could be this positive when getting the news.”

I also received longer and more textured responses from Rob in emails he sent. “I have changed my opinion about living in the moment,” he wrote 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.”

In another message he wrote: “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.”

Lindsey seemed to do the work of three people during each long day which started for her at 5.30am and ended near midnight. But, as she explained, “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."

One night, at the end of a dreary Bank Holiday Monday, a dark rain fell outside but there was still so much light as I listened to Rob and Lindsey. “There are times when I think about death,” Rob admitted, “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.”

I knew that Lindsey would soon settle Rob into his special hospital bed. I imagined their darkened house and both of them trying to find sleep at the end of another draining day. A tug of sadness soon lifted as I remembered what sustained them.

“There's something beautiful,” Rob had told me that night, “about being cared for by the only girl you've ever loved.”

I interviewed the Burrows later that same year and our bond strengthened. So, early on that January morning in 2024, I read Lindsey's message again. It did not take me long to reply:

Morning Lindsey

It's lovely to hear from you! I think of you and Rob every day and I was so happy to see the two of you and Kevin [Sinfield] on TV the other night when they were awarded their CBEs from Prince William. I was thrilled for both of them and I then turned to my wife, Alison, and said: "They should be giving one to Lindsey too.” I know you would say "No, no!" but it's what I believe.

So I was really interested to read the news of your planned book....and honoured that you might want me to write it with you. I loved my time with you and Rob and I felt we had a real connection. I also think that you are among the most incredible people I have been lucky enough to meet. I know you have an important, inspirational and beautiful story to tell which will move and uplift so many people. So, of course, it's a very definite yes to talk more about this possibility. I think we would make a good team and I would work my socks off to make sure it's a book which carries your voice and that it is a book of which you are really proud.

Lindsey and I began working a month later and, despite the harrowing reality as Rob declined steadily, she was a pleasure to work alongside. Even when Rob died on 2 June 2024, Lindsey did not buckle. She asked me if we could resume work the following week and I was touched when she invited me to Rob's small and private funeral on 7 July.

It helped that Lindsey never shied away from any question I asked and she spoke about life and death in such vivid, yet compassionate, words. My task was also made easy as I spent a lot of time talking to her parents, Sharon and Graham Newton, as well as special friends of Rob in Barrie McDermott and Kevin Sinfield - and Lindsey's close friend Angela Elsworth. I also spoke often to Lindsey's wonderful children - Macy, Maya and Jackson. They always made me laugh and feel moved all over again.

It felt as if Rob was also with us, somehow, and it drove us on to try and write a memorable book in his honour.