I’m reading the former rugby union player Steve Thompson’s book Unforgettable about how he has been diagnosed with dementia and probable Chronic traumatic encephalopathy (CTE) after a career involving countless head injuries. He’s all of 45 years of age but already cannot remember the names of his wife and children and has no recollection of his rugby union career, even of playing in England’s World Cup winning side of 2003. As you can imagine, it’s a very tough read, especially if like me getting dementia is one of your biggest dreads. It’s usually regarded as an old person’s disease but Thompson was 42 when he was diagnosed.
We all have our forgetful moments. Only this morning, my partner and I were playing ‘heardle‘, a ‘name that tune’ type game we play every day on her mobile phone. You hear the introduction and the idea is to name that tune as quickly as possible. One of the songs we knew instantly. “Oh, yes, that’s … what’s his name, again? I can never remember his name. God – what is it again? The song … it’s Fly Away. By …” but we didn’t get Lenny Kravitz at all. “What are we like?” Yet I should have got it. I spend much of the day listening to music. I hope it’s not the start of … no, it can’t be. And it probably isn’t. But it helps you understand more about dementia.
I’m eternally grateful I didn’t play much rugby beyond a few school games. In my year, there were lads with battered bodies, gaps where teeth should be, black eyes and broken noses. Those lads were hard and I wasn’t. Who knew that having your head knocked about might cause irreparable brain damage?
I played a lot of football, very badly, it’s fair to point out, and was terrible at heading the ball. But I do remember what it feels like to head the ball in the ‘wrong’ way. We used to watch our local team, Briz (AKA Brislington), at Victory Park. The players seemed to burly and powerful, especially the centre forwards and centre halves, and they needed to be in order to kick and head the ball, which to a young boy like me felt more like a medicine ball. I headed the match ball during a kick about, probably at half-time, and I was seeing stars for much of the afternoon. It was a lesson learned and from that day onwards, I did not seek to head a ball, made even heavier once it rained and with an enormous lace across it. I put it down to being a bit of a wimp. Looking back, I’m glad I learned at a young age how crap I was at heading a ball because I know a good few of those players who went on to develop various forms of dementia, possibly – I cannot know for sure – as a result of thousands of bangs to the head.
I got to know more about dementia and other brain traumas when working part time for the brain injury charity Headway and previously for the Red Cross and the more I saw, the scarier it became. One week, I would meet someone and spend a few hours with them, the next week I would need to introduce myself to them all over again, as they had no recollection of ever having met me. And of course dementia is a death sentence. Once you have it, it only gets worse. Things cannot get better.
My depression and ADHD helps me, in a limited way, to understand how dementia affects people. Only today, an appointment at my local health centre appeared on my phone calendar which I could not remember booking. Very disconcerting, so I contacted the health centre who confirmed that I did not have an appointment at all. Christ alone knows what was going on there, but what if this happened all the time, in everything I did? As it is, I already keep a diary on which I note everything I am supposed to be doing, something I have pretty well always had to do because otherwise it was chaos. And in my youth and beyond, it was chaos. My brain was always on the move, is always on the move, but unless I write stuff down, forget it. I will. The difference for me is that when I see a diary entry, I usually know what it’s for. The dementia brain just gets a diary entry the sufferer still doesn’t understand.
Now, when I watch sport on telly and indeed live, I am thinking brain trauma. Last weekend, I watched a rugby union game between England and Fiji which was full of body collisions with the head leading first. 20 stone blokes bashing into much lighter blokes didn’t exactly look good. How those brains will look in a few years, who knows? Like a boxer whose job actually consists of being hit on the head. We have all come across ‘punch drunk’ boxers – remember Muhammad Ali, who ended up with chronic CET and he was ‘The Greatest’ – and now we are coming across sports people from across the piece with the same thing.
I played football with men who were great at heading the ball. I wonder how they are today – fine, I hope – but I know I’d be far more worried if was one of them and had a forgetful episode along the lines of the Lenny Kravitz incident from this morning. I have always had the most terrible difficulty following storylines in movies and TV shows (“What just happened there?” “Who’s that character?”) so it’s nothing new in my life, but what happens when it starts to happen for the first time?
“If I ever get dementia,” I plead with my partner, “Then take me to Switzerland.” I saw what happened with my step dad when he had it and not long ago I lost a friend I had only known with dementia. A zombie life holds no interest to me, but of course my partner couldn’t take me to Switzerland for fear of ending up in jail. All I can do is hope that dementia never comes my way and that I don’t live a living death. And I don’t want anyone else to, either.
