Good Reading : April 2015
TheNeurological Novelist Lisa’s new novel, Inside the O’Briens, is about the confronting reality of Huntington’s disease (HD), an inherited neurodegenerative disorder that is marked by debilitating physical, psychiatric and cognitive symptoms, including loss of balance, reduced dexterity, chorea (abnormal involuntary movement), slurred speech, depression, paranoia and memory impair ment. The condition is typically diagnosed between the ages of 35 and 45, and symptoms progress until the person dies 10 to 20 years later. Each child of a person with Huntington’s has a 50 per cent chance of inheriting the genetic mutation that causes the condition. Set in Charlestown, Boston, the novel focuses on a diagnosis of HD for Irish Catholic police officer Joe O’Brien, and its implications for Joe, his wife Rosie and their grown-up children. In conjuring the challenges of daily life for the O’Briens, Lisa does not pull any punches, but she doesn’t resort to melodrama either. She exposes all the horror of the condition, yet tempers this stark approach with some of the unexpected rewards that HD brings. ‘I’m fortunate that the people who choose to share their stories with me are probably the kind of people who have found this inner strength, resilience and perspective that is very inspiring to be around,’ she says. ‘What they teach me informs many of the details and specifics of the stories I am trying to create, and they help me to understand Alzheimer’s, autism and Huntington’s. Beyond that, they also teach me about the kind of person I strive to be, because they are teaching me about gratitude, love, perseverance and grace, and they’re teaching me about the humanity behind the medical conditions.’ Lisa also interviewed neurologists, physical therapists, occupational therapists, speech pathologists and other medical specialists. ‘I do the reading first, so I understand the language, the biology and the clinical, textbook stuff as much as I can. I contact the medical community, and then I go and talk to the families,’ she says. ‘With the families I’m looking for what the doctors never talk about: What’s it like to live with this every single day? What do you miss the most? Are there any gifts that have come with this? With all the loss that you have experienced, have you gained anything?’ But how did Lisa come to write about HD? At 22 years of age, just out of college and researching drug addiction as a lab technician in the Charlestown Navy Yard, she noticed celebrations in a nearby lab. ‘About three labs down I could see these neuroscientists celebrating and cheering and hugging each other – and that’s very unusual behaviour for neuroscientists,’ she laughs. ‘It was February 1993, and these scientists had just isolated the mutation that causes HD – and is the only thing that causes HD. GOOD READING APRIL 2015 27 COVER STORY TheNeurological Novelist disease (HD), an inherited neurodegenerative disorder that is marked by debilitating physical, psychiatric and teach me about the kind of person I strive to be, because they are teaching me about gratitude, love, perseverance and grace, and they’re teaching me about the humanity behind the medical conditions.’ Lisa also interviewed neurologists, physical 'With the families I'm looking for what the doctors never talk about: What's it like to live with this every single day? What do you miss the most? '