I can’t even reach out and touch my kids, but seeing them run around giggling it feels like I have been cured
In a raw and emotional but still uplifting new book, rugby legend Rob Burrow reveals trauma of his battle with motor neurone disease
FROM my perch on the sofa, I can see my two daughters, Macy and Maya, running riot in the garden. My little boy, Jackson, is playing by my feet. It’s just right for kicking a ball around with your son. But I’ll never kick a ball around with Jackson. I can’t even reach out and touch him, let alone leap from my perch, toss him over my shoulder and charge headlong into the garden. And I can’t even burble, let alone tell him I love him.
I try to live in the present as much as possible. Savour each moment. But I can’t help looking back. Sometimes, I picture myself as I was, that speedy kid with the wicked swerve and sidestep. I find it difficult to comprehend that my body was ever able to do those things. The same body that struggles to get off the sofa, feed itself or send a text.
And it all started with the word ‘consistency’. I was presenting an award at a Leeds Rhinos dinner and had to make a little speech but I couldn’t get the bloody word out.
Kev Sinfield, my old Rhinos captain, asked if anything was up with me. A couple of the other lads thought I’d been drinking.
I was also struggling to get out of bed and nodding off on the sofa at 6pm, like an old fella. I didn’t think much of it, even when my arms started twitching. I was under quite a lot of stress. Things were a bit rocky with my coaching job at Leeds and we were in the process of moving house. I thought it might have had something to do with my medication for post-career aches and pains.
But my wife Lindsey insisted I ask the Rhinos doctor about it. When an MRI scan and blood tests came back clear, we were quite optimistic. We were laughing and joking on the way into the clinic for the second consultation with the neurologist.
But he said: ‘It’s not good news. I’m sorry to tell you it’s motor neurone disease.’ ‘Are you sure?’ I replied. ‘We wouldn’t be telling you unless we were,’ he said.
The rest of that consultation is a blur. I don’t remember Lindsey asking how long I had to live. I don’t remember the consultant saying I had a year or two.
I do remember asking if Lindsey was OK. She had a bit of a cry and we cuddled. Then I said: ‘Thank God it’s me and not you or the kids.’
When I phoned my parents to tell them the news, Dad hit the deck. I could hear Mum sobbing uncontrollably in the background. At home Lindsey also collapsed in the hallway.
It wasn’t a pretty scene. There’s not much pretty about MND. Then we took the girls swimming and tried to act normal.
We wanted to tell the kids before that Christmas, in the hope that it might clear some of the gloom. When Lindsey started explaining that daddy was ill, Maya looked up and said: ‘What are you telling us this for? It’s boring.’
With that, she went back to playing with her toys. That lifted the fog but it soon descended again.
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. 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. I pictured us walking hand in hand towards Headingley. 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. Having said all that, we now have had a strict no-crying policy at home, at least for the adults. I can hear Lindsey downstairs now, making breakfast for the kids. Soon she’ll drag me out of bed before showering me, getting me dressed, helping me down the stairs, giving me my medication and feeding me. Then she’ll start her day job, which during the coronavirus pandemic meant doing virtual physiotherapy consultations from home. Later in the day it’s the same routine in reverse.
Things started deteriorating fast in March 2020, just three months after my diagnosis. That’s when Lindsey’s role changed. Almost overnight, she went from being a wife to my full-time carer.
I’m too weak to make myself a coffee. Just turning i n bed is murder. It’s difficult watching Lindsey do so much. It makes me feel worthless.
But Lindsey’s constantly cracking the whip, being the bossy wife. She told me off once for not communicating enough with the kids. But it isn’t easy, because they’ re like little streaks of lightning, running all over the house. By the time I’ve typed ‘How was your day?’ in the machine I was using and pressed ‘ Play’, they’ve disappeared. Moments to connect are constantly slipping through my grasp, because they don’t last long in children’s heads.
More and more, I’m separate from what’s going on around me. I absorb everything, but I’m not really a part of it. For example, it’s about 10 metres from my perch on the sofa to the door leading on to the garden. But one afternoon, when Lindsey’s brother was kicking a ball about with Jackson, it seemed like 10 miles. It was like looking through the bars of a prison cell. But the kids can lift me, too. The
Lindsey drags me out of bed and feeds me. It makes me feel worthless
We now have a strict no-crying policy in the house, at least for the adults
I am still fighting the disease tooth and nail. That’s how it has to be
upside of this is that I am always there. I spend so much time with them. When the lockdown rules loosened and I didn’t have to shield as tightly, we headed to the caravan park in Primrose Valley, where Mum and Dad used to take us when we were kids.
When I watch Jackson charging around the fields, happy as Larry, I can see myself. It’s two for the price of one, creating new memories while reliving my childhood.
The other day, someone said to me: “Is it on your mind that this might be the last family holiday you ever have?”
To be honest, I hadn’t given it a thought. There might not be much treatment for MND, but when I watch my kids running around with big smiles on their faces, giggling and screaming and hollering, it feels like I’ve been cured.
ON a rugby field I was always quick, with a wicked swerve and sidestep. When you see me in old home videos, I look like a wind- up toy or a spinning top. If it seems like I’m slightly out of control, that’s because I was.
My brain didn’t always know where my legs were taking me. Luckily, my opponents didn’t know either. I’d pop up all over the field, as if by magic, and cause mayhem. I beat a lot of tackles and scored a lot of tries. The problem was my size. Every week, I was the smallest player on the pitch.
When I was scouted by Leeds Rhinos, people said I was too small. When I joined the Rhinos academy, people said I was too small. When I made my Rhinos first-team debut, people said I was too small. When I was first picked for my country, people said I was too small. I c o mpletely understand it. If someone else my size had tried to make it in rugby league, I’d have written them off in a heartbeat: “Not a chance. Ridiculous. Try becoming a jockey”.
One coach said I would need a “bloody big heart” to make it. A match official once mistook me for a ball boy. When someone asked Leeds coach Daryl Powell if he had ever seen a smaller player he said: “Only in the Under 10s”.
But it didn’t stop me. I had a fabulous career and perhaps one of the clips people watch most was typical of what I could sometimes do. I had already won four Super League Grand Finals with Leeds when we lined up against Saint Helens at Old Trafford in 2011 but I was hungry for more. Life had been difficult as coach Brian McDermott had told me he no longer saw me as a starting player. I had been used most often off the bench and had seriously thought about leaving the club.
As usual, it was windy and drizzly in Manchester and the game soon settled into a typical showpiece arm-wrestle. It was 2-2 when I was introduced, after about 25 minutes. To say I was desperate to do something special is an understatement. And a couple of minutes later, having received a pass just inside the Saints’ half, I saw my chance.
Rhinos fans will know exactly what happened next; the rest of you will have to look it up on YouTube. But here’s the gist of it.
I noticed one of their defenders was slow in turning, creating a gap, so I decided to go for it. That’s the way I ran my game. I was always instinctive. I stepped off my left foot, headed straight for the biggest guy, went r ound hi m, before ducking under another defender’s arm. I was now on autopilot.
I sidestepped Saints full-back Paul Wellens, putting him on his backside, and managed to skip out of an attempted tap-tackle. But I still had three or four defenders closing in. I remember thinking: “I’m going to have to duck again, otherwise I’m gonna get smacked”.
I did get dragged down close to the line but I had enough momentum to slide over. What a moment.
The game was actually level again with 10 minutes left so I thought it was time to rip up the playbook and freestyle again. This time I was just inside our half when I got the ball. I went on a lateral run, before straightening up and throwing a dummy and setting up a try for Ryan Hall.
Having already won the Harry Sunderland [ Man of the Match] Trophy in 2007, I now became the first player to win it unanimously, with all 37 judges voting for me.
I’d be a liar if I said it didn’t feel like a big two fingers to Brian McDermott but there was no point in dwelling on all that. I’d just won my fifth Grand Final with Leeds and would win three more before I was done.
It wasn’t so much that I ignored the naysayers, it’s more that I didn’t really hear them. When they said I was too small, it went in one ear, out the other. I suppose you’d call that focus.
And that’s how I am now, 100 per cent focused. Every day MND tries to convince me to quit — tells me I’m too small, that I don’t have what it takes — but I refuse to listen.
MND picked on the wrong bloke, just like opponents on the rugby field always picked on the wrong bloke. Thought they’d run over me, trample me to dust.
I can’t keep dodging the disease for ever, but I won’t stop trying. I’m not thinking about the full- time hooter. I’m still fighting tooth and nail. That’s how it has to be.