Part 2

A family

secret

Even before Kim’s death wish, life was hard for the Teskes. Gwen and her husband, Larry, were from hard-working stock – she from Saskatchewan, he from Ontario. Larry was 42 when he died of testicular cancer, leaving a genetic secret that lay buried for 25 years: Huntington’s disease. Because Larry’s symptoms were masked by cancer, nobody suspected that he may have passed on a neurological time bomb to his children.

Back then, Gwen was more concerned about the present than the future. “I looked into the coffin and said, ‘How do I go on from here?’ ” she remembered thinking. “But the good Lord gives you strength,” she said. “I had to be there for my kids.” At 39, she had six children to support. The eldest, Brian, was 16. The youngest, Deanna, was 9. Gwen put in long hours running a restaurant at a truck stop to put food on the table. As soon as they were old enough, the kids worked there on weekends and after school.

Adversity was only part of the glue bonding the family, whose warmth and unpretentiousness remain obvious today. Hugging is endemic, humour is rarely barbed, no visit is intrusive and nobody is a stranger for more than a minute. “It’s all about my mother,” Stuart explained. “She’s the one who held us together. She’s a rock.”

None of the kids gave Gwen any trouble. “Not real trouble,” said Lynn Teske, who married Brian in 1978, when he was 21 and she was 19.

They had met a few years earlier at a high-school dance, but he had disappeared with a pal when the music stopped. “A girlfriend and I used to drive around Orangeville looking for him, until I found him,” she said, laughing at her sweet-sixteen boldness. Nearly 40 years later, she still won’t let him go.

Brian had gone to high school in nearby Mayfield, but he switched to Orangeville District Secondary School for Grade 12, “and then we were in the same school.” For nearly 20 years, life was busy but good. They had two children – a son, Jason, and a daughter, Sarah – and eventually Brian ran his own construction company with brother Stuart, digging basements and installing septic systems.

Everything changed as Brian approached 40. The easygoing, laid-back guy who never swore, who never spoke harshly or critically of others, became unpredictably belligerent. “There was no filter,” his wife said. “If he was thinking it, it came out.” Brian developed strange tics, like repeatedly shrugging his shoulders, and opening and closing his hands. One day, when he was sitting at the kitchen table, he picked up a glass and banged it down. After a few crashes on the tabletop, his wife asked him to stop. Bewildered, he asked, “Stop what?”

He also began making strange decisions, according to Stuart, a taciturn guy who fails to hide his tender heart and strong emotions. After 10 years in business with his brother, Stuart quit and moved to Florida to work with standard-bred horses. That’s where he met his wife, Rebecca, and their teenaged daughters, Victoria and Gabriella, were born.

Brian’s daughter tells much more graphic tales of the changes in her funny and generous father. As a teenager, Sarah lost count of the number of times he backed his Dodge Ram pickup into her Mazda, a car she was buying with her own money. “He’d put a hole right through the hood and I would be on my knees crying and he had no empathy at all.”

Eventually, things got so bad that the once-profitable business went broke, the Teskes lost their home and had to move in with relatives. Lynn finally persuaded her husband to go to a doctor, who prescribed antidepressants. “He walked around like he was drunk,” she said. “It was awful.” After repeated trips to the doctor, Brian was finally referred to a neurologist. Having checked his reflexes and asked him to do simple things like stick out his tongue, the specialist looked at Brian and said, “I think you have Huntington’s disease. I want you to consider going for a DNA test.”

Of course, Lynn immediately searched the Internet. “The more I read, the more I knew in my heart that that was what he had.” But denial came easily because nobody else in the family had Huntington’s – his mother was robust, and all his younger siblings seemed fine. Brian finally agreed to go for DNA testing in 1997, when he was 40. But it was another five years before he was willing to ask for the results of the simple blood test that would explain his increasingly bizarre physical and emotional behaviour.

“He didn’t want to know,” Lynn said.

This is a common reaction. At best, one in five of those at risk for Huntington’s are tested, because knowing doesn’t help when you have an incurable and largely untreatable disease. Lynn, nevertheless, tried to persuade him. “We can’t deal with what we don’t know,” she told Brian.