Reporting on rugby’s dementia crisis struck all too close to home | Michael Aylwin | Sport

It has been a horrible week for rugby, a fitting end to a year more harrowing and transformational for the sport than quite possibly any – 1995 and 1895 can make way now for 2020. From the salary-cap debacle at the start, through the ravages of a global virus, the more familiar ravages of an audience endlessly critical of the product, to this, an association with dementia in former players barely at middle age – what chance our grand old game surviving?

From a personal point of view, it has been an unsettling few months, this story first appearing in my inbox in July, while sitting on a beach in Devon. The implications were obviously dire for the sport, the cultural milieu, within which I’ve lived most of my life.

When it comes to dementia, though, from a personal point of view, it has been an unsettling … well, difficult to say when it started. I met the woman who would become my wife in late 2004. Pretty early on, she told me her mum, in her mid-50s, was dying of Alzheimer’s. In time, she started to tell me of her conviction that she was sure to do the same.

Her mum died in 2006, aged 58, and we were married a few months later in a pub around the headland from that beach in Devon. For years it was easy, for me at least, to keep the ghostly interloper in our marriage at bay, even if Vanessa protested from time to time that it was coming for her.

Ben Kay tweeted this past week of his concern that every rugby player who forgets a name or set of keys might now start to panic. The reflexive relationship between brain and self makes possible all sorts of tricks of the light and dark. My concern was that Vanessa’s very fear of dementia might somehow bring it on. It turns out that is impossible, but if someone worries enough about something, we were later told, the sheer stress can absolutely lead to memory failure.

I remember the chill, circa 2012, of witnessing her first glaring lapse of memory, over dinner in the cafe on that self-same beach. I think you know when you see it. But it was an isolated incident and life went on. It was not until 2015 I started to keep a diary of symptoms.

By the time we drove in for the results of her first MRI scan, in October 2017, I had finally accepted that, for once, she was right and I was wrong. It had to be Alzheimer’s. But her scan, like that of all the players who went public this past week, came back clear as a bell.

The relief was short-lived. Her symptoms unwound in 2018, but there are many alternative explanations. Depression, anxiety and epilepsy were among the plausible possibilities, all thoroughly investigated.

In 2019, while researching the chapters on concussion in my book on rugby in the 21st century, I dived into the subject of neurodegenerative conditions and how former American footballers had been afflicted. That only made more obvious the fact I was living alongside the same thing.

Vanessa was sent for a lumbar puncture in the summer of 2019, which was when they found it. A PET scan and a DNA test later, she had her diagnosis at the age of 49. She had been right all along – and there was nothing she or anyone could have done. A rare mutation in her amyloid precursor protein gene.

The players this past week have spoken of the weird sense of relief at their diagnoses. That was my reaction too. We had a name for it at last, an explanation and a kind of justification.

I’m not sure Vanessa felt relief, such is her history, but she has taken it better than feared. One of the very few compensations is the mollifying effect of diminished cognition. I often wonder when it is that she is at her most lucid. Is it when the old Vanessa is trying to break out, the vivacity forcing its way through the fug in fractured bursts of energy or is it when the fug clears and she apprehends the enormity of her situation?

As this past week’s story about the players built in recent months, the temptation to pull out of reporting it has been powerful. Not only is this the most mortifying development in rugby’s long, twisted story, but should anyone so close to this hateful condition be involved? They pull many a TV cop from a case when it gets too personal.

Then again, maybe the insight into what it means for these guys and their families is helpful. The first thing they will find – have found – is that there is not a lot out there for people with dementia in their 40s, at least in terms of a community, and still less for those with young families.

One potential benefit is their part of a wider rugby family, which remains a paragon of its kind. Another is their very status as elite sportsmen. Already, they are throwing themselves into the business of living well, of fighting back. Dementia can work very, very slowly. Meanwhile, science is on the case. Who knows? The game is not over yet.

But above all they should be commended for their bravery, the very bravery, yes, that might have been part of the problem in the first place, but which will surely help them and any others of their comrades who may step forward in the years to come. This article has been curiously difficult to write – and I don’t have you know what. I can only imagine what going public must be like for them.

In an ideal world there would be no need to point fingers and apportion blame. These families, though, are going to need help, whether that comes from governing body, government or just the game at large.

As many a rugby player has noted, as they wipe blood from the brow – it is what it is. But rugby players are never alone. Next, they throw themselves back into the team. And the team responds.


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