I was invited to participate in a study that records reading responses. I received the novel Inside the O'Briens by Lisa Genova, author of Still Alice. and read it as usual except after every chapter I synced where I was. I hope the publisher Simon and Schuster and author learned something. I sure did.
The novel concerns a family who discovers they have the Huntington's disease gene. This is the disease that killed Woody Guthrie, leaving his son Arlo growing up and waiting to see if he carried the gene. There is a 50/50 percent chance of inheriting the disease.
Genova is a neuroscientist who specializes in Alzheimer's disease, traumatic brain injury, and autism. She has become a best selling novelist whose books focus on families struggling with crisis involving brain related diseases. In this novel she introduces a Boston policeman and his family. Joe is ten years from retirement with full pension. His eldest son is newly married. He has a daughter who is a ballet dancer and another teaches yoga. His youngest son is 'finding himself'. Joe exhibits strange behavior and tests reveal Huntington's disease.
Joe struggles with his failing body, his inability to provide a financially secure future for his wife, and the knowledge that several of his children will also die of this disease. Each child has to decide if they want to undergo testing to know if they have the gene. Which is worse? Knowing you will or won't die an early death from a debilitating disease, or ignorance while endeavoring to live a normal life?
We learn about the disease along with the family.
The beautiful part of the story is when Joe realizes his mother, who had suffered from undiagnosed Huntington's disease, had tried to die with dignity. Her example inspires him. His daughter reminds Joe that how he responds to what is happening to him will be an example to his children when their time comes.
Such stories can be relevant outside of the specifics. I thought of my own parents who each died of cancer. Mom showed acceptance. She called all her friends and without self-pity chatted and told them her prognosis. Dad held onto every thread of hope and battled to live for several months. I had resented Mom's desire to die peacefully although I knew she'd endured enough physical pain in her life and she saw death as a respite and an avoidance of a dependent old age. Then I saw Dad's long decline and the indignity of a slow death. Was that the better way?
We all know we will someday cease to live. Some of us know ahead of time that we have a disease that will inevitably kill us. There is no right or wrong way to handle the knowledge. But our choices are an example to those who love us.
I received a free ebook from the publisher. The review is my choice.