Content warning: This story includes references to suicide.
Billy Guyton, the former Blues and New Zealand Māori halfback who died last year aged 33, had a brain injury likely to be connected with repeated head knocks.
The stunning diagnosis of stage 2 chronic traumatic encepahlopathy (CTE) was relayed to his family following extensive testing at Auckland's Neurological Foundation Human Brain Bank.
It makes Guyton the first New Zealand-based professional rugby player to be diagnosed with the condition, following on from US-based Kiwi Justin Jennings, who died in 2020 aged 50.
The Guyton family this week received a report from the Brain Bank that confirmed the CTE diagnosis. It also noted Guyton had "background changes consistent with global hypoxic ischaemic encephalopathy", which is an umbrella term for a brain injury.
Guyton, who played more than 50 games for Tasman and had stints at the Hurricanes and Crusaders before joining the Blues in 2016, died by suspected suicide in Nelson after years of what his father John described as "cries for help".
"I figured out Billy had CTE a few days after he died," John said. "My wife and I were watching a documentary on it and I said, 'F… me, that's Billy. That's what he had.'
"If I can work it out based on a documentary, what the hell were all those specialists Billy saw missing? I hope Billy's death blows a lot of bulls… out of the water. Rugby is so keen to pass it all off as depression that they're happy to ignore what's obvious."
New Zealand Rugby has been approached for comment.
"These guys aren't depressed, they're sick," John Guyton said. "And there's hundreds of them. I read that Carl Hayman described it as an epidemic, and he's right.
"I believe Billy's death was his final 'f… you' to all those who ignored the obvious when he tried and tried and tried to get help."
The Guyton family requested Billy's brain be examined and the coroner who inquired into his death directed it to be sent to Auckland to be independently examined by a pathologist.
The local pathologist noted the existence of chronic traumatic encephalopathy in the brain.
"It was noted as CTE by the New Zealand-based pathologist," said Professor Maurice Curtis of the Brain Bank. "It was sent to an Australian pathologist for a second opinion and it was he who gave it the Stage 2 designation."
Stage 2 CTE is characterised by brain abnormalities that are broadly defined by collections of tau protein in the crevices of the brain, the sulci, mostly in the front of the brain along with an emergent spreading pattern.
Curtis said that by Stage 3 it tended to spread to the hippocampus and memory centres of the brain and by Stage 4 tau is evident over the periphery of the brain.
"There are a limited number of modifiable risk factors in this case, and concussions and head knocks are certainly one of them," Curtis said.
A buildup of tau, which in a healthy brain protects the cells, creates tangles that inhibit brain function. It was historically associated with Alzheimer's disease, though since discovery of CTE in the brains of hundreds of retired American footballers - starting with legendary Pittsburgh Steeler Mike Webster in 2002 - it has become synonymous with that disease.
According to work by Boston University scientists including Dr Ann McKee, who has examined hundreds of brains of former contact athletes, symptoms of Stage 2 CTE include irrational outbursts and severe depressive episodes.
John Guyton said his son's behaviour fitted all-too-neatly into this description.
"The poor guy would spend hours in a small, dark cupboard because he couldn't handle being in the light. Some mornings he'd just sit in the bottom of his shower tray crying, trying to muster up the energy to get moving.
"Can you imagine what was going on in that guy's head?"
Guyton senior said he does not absolve himself from blame. He described himself as far from the perfect father and has spent the last year beating himself up over his son's death.
At one point, not understanding what his son was going through, he tried tough love, something he regrets to this day.
"He started making some mistakes financially and rather than get in there and help him, I decided to give him some space to figure it out on his own. In my mind I was trying to be a good dad, but he didn't need space, he needed me there beside him.
"A couple of times I got random, hurtful messages from him and again my attitude was just to write it off as him being on something and to leave him alone.
"For a long time after he died I felt disgusted with myself. But I didn't understand about CTE. Now I do and eventually I have been able to give myself some grace."
John Guyton said the family remains wrecked by Billy's death and find it difficult to rationalise the idea that the sport he loved so much and gave so much of his life to, "slowly tore his life to bits".
Billy received numerous concussions, the final big one coming in a club game for Waimea Old Boys when he received a knee to the side of the head. When he returned to Tasman Mako training following that concussion, the slightest bump would trigger symptoms again, so in 2018, at the age of 28, the former Māori All Black made the gut-wrenching decision to retire.
He told the Nelson Weekly at the time: "It was a bloody tough decision, I still don't like that I have had to make it but I know it is the best thing for my health and family.
"Watching TV would bring on headaches, doing too many tasks, loud noises, some days I would need noise-cancelling headphones or I would feel nauseous and have blurry or double vision, it was not very fun."
He had sought the advice of his best mate, Shane Christie, who was also forced from the sport after suffering multiple head injuries.
"The key thing for Bill was that he couldn't understand why he was so up and down with his emotions," Christie told RNZ. "That was the thing that was haunting him.
"He would see people and they would talk about concussion, but they would never talk about CTE. Managing concussion is a massively different proposition to managing a degenerative disease and I can't say for certain, but I don't think Bill had this information."
Christie has suffered from many post-concussion symptoms and suspects he might have CTE himself, but needs the appropriate medical guidance to understand.
"I can handle a diagnosis of CTE," he said. "I can manage that, but first it needs to be acknowledged as a possibility by specialists provided by ACC.
"Rugby and the ACC can't hide behind this line that you can't be diagnosed until after death because if they don't acknowledge that, people like Bill can't get the proper care.
"There will be many more like Bill. These players need to be treated on a case-by-case basis, and not with broad statements."
Where to get help:
Need to Talk? Free call or text 1737 any time to speak to a trained counsellor, for any reason.
Lifeline: 0800 543 354 or text HELP to 4357
Suicide Crisis Helpline: 0508 828 865 / 0508 TAUTOKO (24/7). This is a service for people who may be thinking about suicide, or those who are concerned about family or friends.
Depression Helpline: 0800 111 757 (24/7) or text 4202
Samaritans: 0800 726 666 (24/7)
Youthline: 0800 376 633 (24/7) or free text 234 (8am-12am), or email talk@youthline.co.nz
What's Up: free counselling for 5 to 19 years old, online chat 11am-10.30pm 7days/week or free phone 0800 WHATSUP / 0800 9428 787 11am-11pm Asian Family Services: 0800 862 342 Monday to Friday 9am to 8pm or text 832 Monday to Friday 9am - 5pm. Languages spoken: Mandarin, Cantonese, Korean, Vietnamese, Thai, Japanese, Hindi, Gujarati, Marathi and English.
Rural Support Trust Helpline: 0800 787 254
Healthline: 0800 611 116
Rainbow Youth: (09) 376 4155
OUTLine: 0800 688 5463 (6pm-9pm)
If it is an emergency and you feel like you or someone else is at risk, call 111.
