Former Junior All Black John Williams at home in Taupo. Williams has been told he is living with CTE, a degenerative brain disease. Photo / Alan Gibson
EXCLUSIVE
A former Junior All Black is the first New Zealand rugby player to publicly commit his brain to science after being told he is living with the degenerative brain disease CTE.
John Williams, who played two years for the Junior ABs and Waikato in the late-70s and early 80s has been tested by a neuro-psychologist whose report indicated that the former lock has chronic traumatic encephalopathy. That assertion has since been endorsed by a physician, Williams told the Herald at his Taupo home.
CTE can only be definitively diagnosed post-mortem so Williams, 60, has notified his family that he wants to donate his brain for testing.
"It's very important to me. I want to do something to help," Williams said. "There will be a lot of old rugby players sitting around like me not really sure what's going on with them and don't know why they're doing silly things.
"I hope that by sharing my story some of them will not be embarrassed to seek help like I was for so long."
There is increasing concern that many retired rugby players are living with the distorting effects of concussions suffered during their careers. Last year the Herald published a series of articles titled The Longest Goodbye, which told the stories of several former All Blacks whose families believe their dementia relates to their playing careers.
Williams, known as "JJ" due to the Welsh winger of the same name who played in the 70s, lives with chronic pain, dizziness and headaches. He is often confused by simple tasks. He can barely write anymore. He has to re-read the same pages of books multiple times to take it in.
This week he cut his toe and traipsed blood through his house. He can't remember how or when he cut himself, just the unholy mess he made.
When friends like former All Black Earle Kirton noticed the deterioration, they urged and assisted him to seek help. It would be wrong to say that Williams has embraced his plight, but he has acknowledged it and wants other to learn from him.
Sir Richard Faull, the neuroscientist whose Auckland University research team discovered the brain can help repair itself by generating new cells, said gestures like Williams' were greatly appreciated.
"Traumatic brain injury and CTE resulting from sports injuries is of huge interest and is a very important area to undertake research," Faull said.
Williams will need to register as a donor with the Neurological Foundation Douglas Human Brain Bank at the Centre for Brain Research (CBR). When death occurs brain bank staff make arrangements for the organ to be removed and transported to the CBR.
The brain tissue will be processed, stored and scientifically studied in the research laboratories to enable the extent of the damage to the brain to be assessed and to undertake research to investigate the role different proteins - such as amyloid and tau - and genes that have been implicated in CTE.
"The research will be ongoing but the initial results will be communicated to the family after five to six months," Faull said. "The research will be undertaken in consultation with international experts who are undertaking similar studies and the results will be communicated to the international scientific community."
High-profile research in the States has shown the extent of the problem with CTE and retired NFL players, with more than 100 cases diagnosed.
Williams has a sanguine way of looking at the future of his grey matter.
"It will be the first time anybody's been interested in me for my brain," he laughs.
How he got to this point is a more serious matter.
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Plucked from relative obscurity to play for the Juniors - effectively an All Black B team - in 1978, Williams, who stood 1.99m and weighed 108kg, was identified as a lock with ideal physical traits and an uncompromising outlook.
"I was a head-first player," he noted.
That quality immediately started to have an adverse effect on his career. During a match against Queensland, Wallaby Mark Loane was about to score in the corner until Williams got his head in the way of Loane's knee. He stopped him scoring but left the field on a stretcher bound for a Brisbane hospital.
It was a prelude of much worse to come.
The following season the Juniors played an internal tour, which started with Wairarapa-Bush lock Mike McCool giving a cocky Williams "a father of a hiding from a man way tougher than I'd ever be".
He broke his nose, broke his tooth and took two black eyes with him to the aftermatch.
Against Thames Valley he was kicked in the head and lost consciousness but never went to hospital. He played another four games over three weeks on that tour, suffering head injuries in every match and losing consciousness in one.
"I'd walk off the field and know I wasn't right," Williams recalls, explaining that it felt like an out-of-body experience.
After the final match of the tour against Wanganui, Williams passed out in the showers.
Instead of getting proper medical attention he went home and rested up for a game for Waikato. When he suffered a further head injury he was taken to hospital where it was discovered that the kick to the head a month back had fractured his skull.
Even by the macho standards of the day, Williams plight was regarded as horrifying. Mandatory stand down periods were proposed and, indeed, Williams had to sit out the bulk of the 1980 after repeatedly failing to get a medical clearance to play.
Unable to regain his sharpness and a regular place in the Waikato Ranfurly Shield team - he did win man of the match after King Country's challenge, but can't remember the game - he walked away from the game at the end of 1981.
The damage was done. He doesn't remember much about the 1980s and his comparative clarity around his rugby career owes everything to his recently deceased mother, Dawn, who unbeknown to Williams had faithfully put all his clippings in scrapbooks and kept all his mementos.
Williams' post-rugby life has been complicated. He spent some time sharemilking but realised after a time he was a "people person". Sharing his daily life with "cows was not really me".
He moved to Taupo and went into the bar and restaurant trade. It started well and ended badly.
Last year he was found guilty of tax evasion and sentenced to three years 10 months prison.
That sentence was this year effectively reduced on appeal to time served when the full extent of his cognitive problems were revealed.
The court heard testimony that Williams had suffered pre-frontal cortex damage that led to poor decision-making, an inability to process risk and increased credulity.
The report, authored by clinical neuropsychologist Vincent Waide, listed the symptoms of CTE including memory loss, disorientation, poor judgement, erratic behaviour, hearing loss and tremors.
"Mr Williams presents clearly in a number of these features," the report said.
"It's hard to talk about because I don't know what to say to people," Williams said. "I'm always tired. I could sleep for the best part of two days when you go home."
Williams said his life had been framed by embarrassment; the shame of his crime and punishment compounding his sense of failure that he never converted his promising rugby career into a great one. He feels a constant sorrow about the pressure his plight puts on his partner, Raewyn.
It is a withering self-assessment and to those who know him well, an unfair one.
Williams hopes, however, that by sharing his story with others, and by sharing his brain, he can regain some pride in death that eluded him in life.
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