Alex Abbey was a teacher, the head of PE, and he still would be if he could. He had to quit in his early 30s because he started suffering black outs. He had one in a lesson “and the kids all thought I was dead”.
So he sought specialist help. At first, the doctors told him he had motor neurone disease and that he ought to go home and start “making preparations”. After the next round of tests they decided it might be Multiple Sclerosis. He had four years of treatment before they realised it was another misdiagnosis. Finally, he found a neurologist who was able to tell him what was wrong. He has probable Chronic Traumatic Encephalopathy (CTE), probable because it can only be diagnosed definitively postmortem.
This was in 2015, five years before a group of former professional rugby players, including Steve Thompson, Michael Lipman and Alix Popham, first revealed their own probable CTE diagnoses in the Guardian. Like them, Abbey was a rugby player, only he never played professionally. His injuries meant he never got the opportunity.
Now, at 48 years old, he is one of a group of more than 55 amateur players bringing legal action against the game’s authorities, who they accuse of negligence in failing to protect them from brain injury. It’s a separate case to the one involving Thompson, Popham, Lipman and more than 200 professionals, although it is being organised by the same law firm.
Abbey used to be “immersed” in rugby, but hasn’t been inside his local club in years. “I keep getting invited, but I can’t face it to be honest.” He used to be there “six days a week”.
He grew up in Warrington, rugby league country. His father played professionally and as a kid Alex “ate, slept, and breathed it”. He played union for Newton-le-Willows, league in Warrington and turned out for his school team. He was playing open grade club rugby, against adults, by the time he was 13. Through his teenage years he was playing three games a week and doing contact training almost every day in between.
Abbey tried adding it all up. He says he “probably played 600 games” as a teenager, many of them against men. He can pinpoint 18 concussions, the first when he was 12, the last was when he was 30 after he’d come out of retirement to play “with my mates at the bottom of my road”.
Often as not, he’d play on. He felt it was expected of him. “When you got knocked out, they picked you up and poured a bucket of water on your head or put a cold sponge down your back. You woke up and then if you could walk in a straight line you carried on playing.” If you couldn’t walk straight, they’d wait until you could then send you on again.
He was a kid, being “smashed on to the floor, then getting up and going back for more, again and again, and again, then doing it over the next day.” He loved it “because you’re stupid and young and you just keep going and going.”
None of this would be allowed now. But it ought not to have been allowed then. He says it was like “wild west”. No one kept count of the concussions, no one ever stood him down or suggested he sit the next match out. Usually, he would be playing again the next day. The damage added up. By the time he made it to university he was starting to black out in every contact. “Only I never realised it because it was only for a split second, like an extra long blink.”
Abbey was good, he had trials for the North of England U16s and played with and against men who would go on to become famous players in both codes. Wigan tried to sign him when he was 17, Warrington later asked him to a trial, but his father insisted he go to university and “get a proper job”. So he did.
He gave up playing soon after graduation because of series of bad back and shoulder injuries, went into youth coaching, then became a teacher. He was good at that, too, and was put on the Future Leaders programme. But he found he was starting to forget people’s names, that he was becoming inexplicably aggressive and saying inappropriate things to staff and students.
Over the years since, his symptoms got worse. Now his vision comes and goes, his hearing fades in and out, he is doubly incontinent, so his bladder and bowel control has gone. “I walk down the street and I spontaneously urinate. I’ve spontaneously defecated on occasion.”
It’s worst when he’s struggling with an illness or infection – “my brain decides to inflame everything and all my old injuries start aching”. He’s left bedridden. “People think dementia is about forgetting where you are, but with this disease there’s also the physical side of it. Your brain’s not working properly because all the pathways are blocked.”
The future scares him. “My reality is that in 10 more years I’ll be arguing with my loved ones and I won’t even know I’m doing it.” He has a wife, and three children. She has had to give up work to care for him. “I was talking to her about it, she was saying ‘it’s alright for you, you won’t know. But I don’t want it.’ But we can’t change it.”
He is on a course of experimental medication, which he hopes can arrest his decline. “I would do anything to stop myself from getting worse, to be able to go back to work. I’d give anything, it’s that bad. It’s a horrible, horrible disease and I don’t think people appreciate it because they see me walking around.”
Abbey is still a Labour councillor and he is trying to keep his father’s wholesale business going. He says he’s lucky that his parents employed him and had enough money to and keep him “wrapped in cotton wool”. The symptoms come and go, but he describes his overall trajectory as a “jagged slope” downward.
“There are times when I ask myself, ‘What am I doing? Why am I doing this? What do I bring to the table?’ And yeah, I’ve been suicidal, on a number of occasions, to the point of getting the tablets out to kill myself in the middle of the night. It’s only having a young family and wife that allowed me to talk myself down.”
Abbey knows what some people in the game say; he has heard it all already. There are plenty of people who still don’t seem believe what is happening or who blame it on genetics or behaviour away from the pitch. It came up again recently, when the England forward Courtney Lawes said: “Generally it’s your genetics which will determine if you get things like dementia and stuff like how much you’re drinking, other recreational things, and how healthy you keep yourself in later life”.
Whoever Lawes has been talking to, maybe he needs to sit down and listen to someone like Abbey. “I didn’t drink. I didn’t take drugs. And I’ve never smoked a cigarette,” Abbey says. “Between ages of 12 and 21 I wouldn’t have drunk more than a dozen times. The guys at university used to find it funny. I never liked it. I still don’t have alcohol in the house.”
He’s mainly a Christmas drinker. He does it maybe half a dozen times a year. “So next they’ll say it’s ‘just bad luck’, that it’s all hereditary. But we’ve got no history of dementia in the family, on either side.” He says his Dad’s just starting to show signs now he’s 75. “The truth is you can’t ascribe the disease I’ve got to anything else other than playing rugby.”
In the UK and Ireland, Samaritans can be contacted on 116 123, or email jo@samaritans.org or jo@samaritans.ie. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at befrienders.org.
