Karen Johnson’s journey through love, loss and the challenges of caregiving unfolds in her new book, “Letters For Brian.” The memoir explores the life of her now-deceased husband, Brian Johnson. He was a professional rugby league player whose life was cut short by the ravages of Alzheimer’s disease. Brian’s illustrious career certainly provided the backdrop for their tale. It sheds light on the terrible impact of chronic traumatic encephalopathy (CTE) and complicates the discussion about brain injury in contact sports.
Brian Johnson, one of the great stars of rugby league from his era, with St George Dragons and Eastern Suburbs. His career with the Dragons spanned 149 games played. In 1980, he was named the Dally M fullback of the year. After retiring as a player, he quickly started a successful coaching career which took him to coaching the Warrington Wolves in England’s Super League. The family blames Brian’s Alzheimer’s disease on CTE — chronic traumatic encephalopathy, a degenerative brain disease caused by repetitive head trauma.
A Love Story Marked by Rugby League
Karen and Brian Johnson in 1979, building a life enmeshed with rugby league. Karen remembers the way the sport provided for their family. “Rugby league paid the bills at our house forever,” she stated, reflecting on its significance in their lives. Having grown up immersed in the sport, Karen has an irreplaceable grasp on what it’s like to be influenced by it—as well as its potential dangers.
Throughout their marriage, Karen’s dedication to Brian became increasingly evident as he faced the decline brought on by Alzheimer’s. As she navigated his care in the later stages of his life, Karen took comfort in writing her son’s letters, notes and love letters. “When he was tucked up in bed, I just needed to talk to him,” she shared. “So when he wasn’t there, I was still talking to him like I used to.”
The Reality of Alzheimer’s and CTE
Karen Johnson illuminates the personal impact Alzheimer’s disease has made beyond the touches often associated with disease. “People think dementia means you can’t find your car keys or remember your children’s names,” she explained. “They don’t realize that everything we do and think is memory—how to eat, how to speak, how to read, how to write.”
The family believes CTE played a crucial role in Brian’s health decline. Karen Wright shared her frustration at the history behind what we’ve all known for years about head injuries in sports. “The knowledge has been there for a long time that knocks to the head, if you’re susceptible to it, can cause CTE,” she remarked. She said with these athletes we need to know the risks of physical contact with sports. She wouldn’t advise a child to take part in all elements of the sport rugby league. “I wouldn’t get a seven-year-old to put their head in a scrum,” she said.
Advocating for Change in Sports
Karen Johnson advocates for diversity in rugby league. She appreciates all of the steps that have been taken to reduce the risk of concussions in the game. “I’m really pleased to see [the NRL] trying to mitigate the risks involved,” she noted. That doesn’t mean she isn’t honest when it comes to player options and the attractiveness of contact sports. “I don’t think you can stop men and women wanting to play the sports they want to play.”
Karen’s book, “Letters For Brian,” serves as an emotional tribute while raising awareness about the realities of caring for someone with Alzheimer’s disease. Though she knows her story will now be on the front page of newspapers, she admits that this memoir wasn’t really for anyone but herself. “People are going to know more about us than I realized, but I kind of wrote it for me,” she stated.
