To know or not to know? This question about Huntington’s Disease is at the center of the novel Inside the O’Briens by Lisa Genova [release date April 7]. With genetic markers that forewarn of its inevitable onset, this lethal neurodegenerative disease, passed along from parent to child at a rate of 50%, has no treatment or cure.
This novel follows Joe O’Brien’s escalating symptoms with his loss of job, personality, and dignity. His four grown children struggle, not only with seeing their strong father figure deteriorate before their eyes, but with the quandary of deciding if they want to know whether they carry the gene and its ultimate death sentence. As his symptoms increase, Joe reevaluates the image of his mother as someone whose alcoholism led to her being locked up with her two children abandoned. The reader is way ahead of him in figuring out that she did not drink herself to death as everyone said, but was a victim of Huntington’s Disease.
The disease lays a heavy hand on Rosie, the devout Catholic wife and mother, trying to hold her family together, and creates a crisis for oldest son JJ and his wife Colleen when her pregnancy announcement coincides with Joe’s diagnosis followed by JJ’s positive test for the gene. Second son Patrick, who has been freeloading off his parents for some time avoids dealing with the problem but behaves in ways that are symptomatic of the disease. Dancer daughter Meghan tests positive for the gene, but copes by throwing herself into getting all she can from her art before it becomes too late.
The central figure is the youngest daughter Katie who struggles with the decision of whether or not she wants to know. She copes by writing quotations on her walls with a Sharpie and gives her father a reason for going on as she tells him, “We’re going to learn how to live or die with HD from you, Dad.”
The story pulls the reader in to the accurately portrayed disease, but even more to the relationships of its people. One of the most touching moments was Joe’s realization as he lurches down the hallway with Rosie that the “best anyone can hope for in life was someone you love to stagger through the hard times with.”
The characters drew me in and I pondered the question with each – to know or not to know? I think I’ll add Still Alice to my reading list, Lisa’s previous book that became a motion picture. It’s Alzheimer’s Disease has a strong thread in my own heritage. Would I want to know? Truthfully, I am no closer to an answer than when I began.