My family asked if I’d survive the disease. It was a tough question
Ed Slater did pre-season at Gloucester until his life turned upside down with a diagnosis of MND
ED Slater is sitting in the corner of a cafe in Cheltenham, with shoulders so broad they block the sunlight from coming through the window. On the face of it, he does not seem much different to the enforcer who was playing professional rugby for Gloucester last season. A giant of a man.
The room is full of laughter. He has been making jokes about some of the realities of motor neurone disease, comparing the information booklet for patients to a holiday brochure. Fresh-faced and 34 years old, with his wife Jo beside him, it feels like this conversation is about somebody else.
He was diagnosed with the terminal illness in July. There are no apparent symptoms at first glance, until he picks up the left arm he has been leaning on. He pulls at his fingers with little resistance, showing their loss of function, and suddenly it all feels real.
‘The strength isn’t there anymore,’ demonstrates Slater. ‘The strength and dexterity has deteriorated down my left side. Small things like doing up shirt buttons or putting on trousers have become difficult.
‘Me and Jo went to the gym this morning. I use the machines now, rather than the free weights. If I’m wobbling all over the place with dumbbells then I’ll cause someone an injury. I’ve got enough going on without dropping a dumbbell on my head!’
If you don’t laugh, you’ll cry.
Underneath his baggy jumper, Slater’s left arm has started to deteriorate. Sooner or later, the rest of his body will follow. Over the course of two hours, the young couple often resort to humour. They find a way of filling the room with smiles as they discuss the cruel reality of their world.
‘You’ve got to find humour in it,’ he says. ‘We walked into hospital in July, I got diagnosed with MND and walked out with a brochure as if I’d invested in a timeshare. More or less you’re left in the dark and you find your own way through it. You have to figure out what works for you.
‘Sometimes you just want a little bit of calm and normality from it all. Everyday boring stuff. The school run, going to the supermarket, cleaning the house. Things that you used to curse because you couldn’t be bothered. They’re the things that keep your mind occupied. I don’t think I could sit on the sofa being depressed all day. It wouldn’t help Jo, it wouldn’t help the kids and it definitely wouldn’t help me.’
It was last November when Slater first started experiencing symptoms. He was kept awake by muscle twitches throughout the night. ‘They became relentless… 24 hours a day’. Eventually he alerted the medical team at Gloucester, reaching his own conclusion before the official diagnosis.
‘Since February, unless a miracle happened, I knew I was on this path. I’d bounced around the room with it. There’s part of you that lives in that space of “not yet” — I’d lost a bit of strength in my arm but I was still running around with the boys,’ says Slater, a lock, who previously spent seven years at Leicester and captained England during a midweek match on the
2014 tour of New Zealand.
‘The week before my diagnosis, at the start of pre-season, I went to catch a ball and thought, “Jesus Christ”. There was no dexterity in my arm. I’d lost the ability to catch and pass without thinking about it. I was shovelling out s***. Fraser Balmain is my best mate and he’d known about it all the way through. He said, “Mate, you’ll be all right,” but at the end of that day I said, “I’m done”. I rang George Skivington that night, July 5, and said, “This is no good, mate”. ‘It was the least of my worries. I didn’t need to be thinking about training or whether I looked stupid running. Rugby was a good distraction to start with but it got to a point where rugby was almost irrelevant.’ Listening in, Jo intervenes: ‘It’s mad to hear you say that after however many years. You lived and breathed it. It was a mindset shift. Rugby had always been No 1. It was almost a relief to take a step back. Gather yourself and work out how to shift into this new stage.’
Slater is pragmatic about the future. He knows things will soon become more challenging.
‘My outlook has changed. I look at the short term now. The furthest ahead I’m looking is a trip to Australia in October, something we’ve always wanted to do. That’s the furthest down the line I’m looking.
‘The advice you get is to adapt your home as soon as you can. You don’t want to be living in a building site when you’re more or less f ***** . We’re getting builders sorted. We’re lucky we’ve got space to bring the garage into the house. It’s more or less putting a bedroom and a wet room downstairs.
‘Have you ever used a Japanese toilet? Some of them have heated seats! Doddie Weir told me to invest in one because it does everything for you. I don’t want to have to think about Jo wiping my a***.
‘You have to think about vehicles and wheelchair accessibility. The incredible donations have allowed us to do that comfortably without worrying about whether it’s going to leave us in debt and leave Jo behind dealing with financial issues.’
Another job has been ‘banking his voice’. It involves recording himself speaking so, when his voice box breaks down, he will be able to communicate with his family electronically. He pulls out his phone and plays some recordings. The phrases include ‘the quick brown fox jumped over the lazy dog’ and ‘I’ll have soup of the day please’.
‘Banking my voice was really important,’ he says. ‘That was probably the most emotional day for me. You read a book called I Will Always Be Me, which explains your condition. I read it with my daughter Edie and she didn’t bat an eyelid. The premise of it is that, “I can’t walk, I can’t speak, I can’t do this, I can’t pick you up anymore”. When you dive into that, it’s hard. Really hard. I was crying doing it.
‘I’ll do something similar with some Google technology next week. I have a bit of choice about how I sound. Let’s see what accent I feel like on the day! Maybe I’ll go for the more robotic sound. Chuck in a few swear words! See if I can throw in some Milton Keynes dialect!’
He turns to Jo and they laugh about teenage years, when he wore
Recording my voice so that I can communicate with my family was really important
a similar headset while working in an HSBC call centre. “Hello, you’re through to Edward!” they chuckle. Their three children — Florence, Edie and Frank — are 8, 6 and 4. Slater’s purpose in life has shifted from rugby to creating memories with his family. He is also intent on following Weir and Rob Burrow by raising awareness of a disease that has been chronically underfunded.
Time is now sacred. Life has become a balancing act between appraising the future and embracing the present. ‘If I’m brutally honest, if you’d asked me before what I’d do if I had MND, knowing what I knew, I’d probably have said I’d top myself rather than cling on,’ he says.
‘When you’re actually put in that boat, you want every day given to you. The juxtaposition is that I don’t want to go down that path and get to that stage, even though I know that’s exactly what’s going to happen. But I also don’t want to top myself. That’s the alleyway I’m stuck in, with the two walls closing. It’s a strange place to be in but you’ve just got to be comfortable with it.’
Jo adds: ‘We’re just trying to help the kids as much as possible. You might keep it together for so long and then suddenly you might be fuming about something completely random, like a cat in the garden. It’s fight or flight mode.’
Slater recalls the first conversation that he had with their two youngest about the illness.
‘The kids make you laugh,’ he says. ‘We were telling them, “So, I’ve got this disease” and Edie asks if it’s going to kill me. “Well, yes, eventually, but not yet”.
‘They start asking what happens and you tell them on a basic level that your muscles stop working and eventually you can’t move. So she’s like, “Yay! Well I’m a good doctor!” Brilliant. Perfect.
‘Then she asks what happens when your legs stop working and I tell them I’ll need a wheelchair and it’s, “Yay! I love wheelchairs!” She runs over to Frank, who is there eating an ice lolly without a care in the world, and says, “Frank! Daddy’s getting a wheelchair” and Frank’s like, “Yay! I’ll push you!”’
‘At that point Frank says, “I’ve got
I walked out of hospital with a brochure on it like I’d bought a timeshare!
news too…. do you want to hear my news? I’m graduating from preschool!” Kids are great with it, at the age they’re at. If it doesn’t affect their immediate day-to-day life then they just get on with it.’
Not everyone can look at the situation through the innocence of children’s eyes. Slater chose not to take up a prescription of riluzole; a drug claimed to slow the progression by three months. There is no timescale on his condition. Life expectancy, for the majority, is two to five years. They have asked the question but there are few answers.
‘My attitude is to crack on. I’m not seeking sympathy. When people come up to you and say they’re sorry you don’t know what to say.’
He does not look back with bitterness. Asked if rugby collisions were a contributing factor to his illness, his short answer is that he does not know.
‘There’s genetics and there’s a suggestion that strenuous sports have an impact, but we know so little. I would never want to put people off rugby. Would I go back and say I wouldn’t play rugby? No, I’d still play rugby and do what I’ve done. Rugby’s given me so much. I wouldn’t relive my life without it.’
With the time approaching 3pm, Slater begins to think about the school run. He is still able to drive. ‘Don’t worry, it’s an automatic!’ he says with that familiar laugh. Jo responds with a joke about her fear of driving a manual car. They pick up a few doughnuts for the kids and off they go, leaving a trail of spirit and determination in their tracks.