THE FOLLOWING PASSAGE is an extract from ‘Too Many Reasons to Live’ by Rob Burrow.

Nothing can prepare you for that moment.

Nobody can tell you how you’re meant to react. But I didn’t expect things to be so vague.

It was pretty much a case of, ‘You’ve got MND, there’s no treatment, no cure, and you’ve probably got a couple of years to live. Off you toddle.’

I wanted to know more. Why did I have MND? Why did some sufferers live longer than others? What about Stephen Hawking?

Why the hell have I only got two years when he had 50-odd?

Who could I speak to, to find out what this disease would do to me?

As I’ve said, Lindsey knew far more than me about the devastation MND could wreak. She’d dealt with MND patients who weren’t able to get out of bed or feed themselves or breathe unaided. So she knew all too well what I was in for. And she knew what she was in for. No wonder she was in a bit of a state.

That first week or so after being diagnosed was grimly surreal. Other than my voice, which was getting more and more slurred and gravelly, I felt fit as a fiddle. I’d only just turned 37.

I’d played in a Super League Grand Final only two years ago. I could still drive, run and lift the kids onto my shoulders. It didn’t make sense. I wondered if the consultant had made a terrible mistake. Maybe he was new at this stuff? Maybe he’d mixed me up with someone else?

I kept thinking about my family’s life after I’d gone. Lindsey as a widow, without a man about the house, and the kids not having a daddy. Who’d take the girls swimming? Who’d teach Jackson to catch and kick a ball?

My mum and dad are such sweet people and I worried the news might crush them. How could their dynamic little boy, who had defied all the odds on the rugby field, be reduced to this? Once he’d peeled himself off the carpet, Dad was a mixture of guilt and defiance. He wondered if rugby was responsible, blamed himself for letting me play.

All those knocks on the head, which had once seemed like badges of bravery, now suddenly just seemed daft.

But Dad wasn’t ready to stop believing in his little superhero. He thought I’d beat it, like nobody else had. Make the disease look foolish, like I’d made all those big, ugly men look foolish on the rugby field. I did it then, I’d do it now.

The hardest task was telling the kids. Macy was eight, Maya four and Jackson turned one a few days after my diagnosis. How do you break it to three small children that their dad has an incurable disease and won’t be around for much longer? That’s something else we weren’t told. Lindsey and I were still struggling to wrap our heads around it.

We didn’t have the answers, so weren’t sure we’d be able to cope with any questions they might have.

We wanted to tell them before Christmas, in the hope that it might clear some of the gloom. When Lindsey started explaining that Daddy was ill, Maya looked up from her toys and said, ‘What are you telling us this for? It’s boring.’

With that, she went back to playing with her toys. Talk about breaking the ice. Absolutely perfect. It felt like a big weight had been lifted off my shoulders, and Lindsey felt the same. A couple of days later, Macy said to Lindsey, ‘Mummy, I feel sad that Daddy was told what he was.’

She asked a few questions and Lindsey told her that the doctors and nurses were doing everything they could but that Daddy wasn’t going to get better. There’s no textbook way of dealing with this stuff, but our policy was, to be honest.

I thought telling the kids might clear the fog. It did, but it soon descended again, trailing behind me wherever I went.

One evening, I gathered Macy and Maya in my arms and hugged them against my chest, harder than I’d ever done, before taking Jackson upstairs for a feed.

While he chattered away contentedly in the dark bedroom, I pictured him on his first day of school, looking smiley and proud as punch in his smart new uniform. I pictured him on a rugby field, darting here and there, leaving defenders clutching at thin air.

I pictured us walking hand in hand towards Headingley Stadium, both decked out in the blue and amber of Leeds. It was a collage of the impossible, my own personal movie reel of things that would never happen. Tears rolled down my cheeks as I rocked Jackson to sleep.

You’d think that dealing with friends would be easier, but that wasn’t really the case. My initial approach was a mixture of black humour – which probably made some people feel uncomfortable – and evasion. The day after my diagnosis, a mate texted to see how I’d got on at the clinic.

My instinct was to make a joke about it. At Leeds’s training ground, there’s a big mural of club legends who have died.

So I texted back, ‘Bad news. Got motor neurone disease. Save a place on the mural.’

That was probably a bit mean of me. What was he supposed to say to that? Then again, how was I supposed to tell him?

I sent long messages to a few of my closest teammates, including Kev Sinfield, Danny McGuire, Jamie Peacock, Keith Senior and Jamie Jones- Buchanan, with whom I’d shared a dressing room at Leeds for the best part of two decades. They’d already twigged that something was badly amiss.

Like they say about washed-up boxers, they’re always the first to know, deep down, but the last to admit it. Meanwhile, close friends can see the stark truth.

As my boss, Kev had had a ringside seat for my deterioration, which is why he was so keen to get to the bottom of things. But I actually think my decline was easier to detect from a slight distance, that old friends I saw from time to time were better placed to gauge the changes in me.

Jamie Jones-Buchanan noticed I was getting thinner. I’d always been short, but years of intensive training had thickened me up, made me almost bulbous, especially around the thighs and backside. A few weeks after the dinner where I couldn’t pronounce the word ‘consistency’, he gave me a call and I struggled to pronounce his name.

Then, in November, me and Danny McGuire did a gentlemen’s evening in Cumbria, which consisted of about 200 blokes getting leathered and wanting entertaining rugby stories. I could barely talk and Maggsy had to cover for me.

We somehow managed to get through it, but that must have been quite disconcerting for him and I know he was worried.

When I met Jonesy for a coffee on the Kirkstall Road in Leeds, the questions kept coming.

It wasn’t an interrogation, more an hour’s gentle probing, but Jonesy’s concern worried me. You know what it’s like when friends start making a fuss. You can bury the truth, but when mates pull out their shovels and start digging, sensors get tripped. That those sensors didn’t trigger alarm bells was down to wishful thinking, or not thinking at all.

When texts started trickling in from people I hadn’t told, I realised news of my diagnosis had leaked and started spreading through the Rhinos grapevine.

One hardcore Leeds fan, a great guy called Richard Stockdale, who had seen almost every game I’d played since I was a teenager, sent me a direct message on Twitter, asking if I was OK. I said I was fine, and why was he asking? When he said he’d been told some bad news about my health, I came clean.

That’s when I decided to take control of the situation. Far better to hit people with the truth, however brutal and difficult to stomach, than have them walking on eggshells around me and whispering behind my back.

‘Too Many Reasons to Live’ by Rob Burrow is published by Macmillan. More info here.