[This review contains spoilers.] Lisa Genova made a name for herself with her novel Still Alice, about a woman with Alzheimer’s disease, which was recently made into a movie. She has declared that her goal is to raise awareness of neurological conditions through her fiction, and her new novel, Inside the O’Briens, features Huntington’s Disease. The O’Briens live in the Charlestown region of Boston, an Irish neighborhood of mostly working class people who stick close to the place where they were born and raised. Joe and Rosie have four children, and although they are all now adults, Katie, Megan and Patrick still live at home. Their other son JJ has married and he and his wife are trying to have a baby. Joe is a cop while Rosie maintains the home. Every Sunday the whole family eats together. They argue about everything. Rosie is in her own way a strict Catholic; the house is full of angels and other signs of her religion. She didn’t want to use contraception since that goes against the teaching of their church, but after 4 children, Joe insisted. Their children are not so religious, but Katie is a yoga teacher, and she takes her practice seriously. Megan is a professional ballet dancer, and JJ is a firefighter, so three of the children have lives that involve a lot of bodily strength and control. When Joe eventually realizes that he has Huntington’s disease, one of his main worries is whether the has passed on the gene to his children. Each child has a 50% chance of inheriting it.

The novel mainly follows Joe’s journey in his developing symptoms, his explaining them away at first, and then coming to accept he has a serious disease.  It is a series of hard moments as he endures both the physical and emotional symptoms, which include involuntary bodily movements, a lack of physical coordination, forgetfulness, irritability, and rages. He starts to see the effects first on his ability to do his job, which is demanding, with long hours often standing outside in the cold, dangers from criminals and local youth looking to get into trouble, and tedious paperwork to complete.  This leads to them going to a doctor, and they get the terrible news, which is given suddenly, without enough preparation. The phrase “Huntington’s” is mentioned, and then Rosie goes to the internet to find out herself what it means. Once they start to understand what they are up against, they have to tell their children, and then the children have to decide whether to get tested to see if they are carrying the gene for the disease. The children handle the news differently, and it leads them to reevaluate their lives.

The novel follows Katie more than any of the other children. She is open to new ideas, and she has started dating a man from New York, which is in itself a deviation from her parents’ expectations. But the man is also black and not Catholic, and these might be deal-breakers for her parents. When her boyfriend announces that he is moving to the West Coast and wants her to come with him, it is really tough for her to consider such a change.  When she finds out her father has Huntington’s, she feels like she has to stay and be there for him, even though she really wants to get out. She also has to decide whether to get tested, and she is torn. She goes to a genetic counselor to start the process, but does not follow through.

Genova has a style of writing that helps bring the reader into the situation. The tight-knit community of Charlestown gives the novel plenty of character, and the importance of religion and tradition makes the story very distinctive, even if it feels like a throwback to an earlier era. They have to confront their own values when their children don’t conform to their own ideas. Joe also has to think back to the past, remembering his mother dying in a state hospital. He was told then that she was an alcoholic, but now he realizes that she can’t have had a drink in her last five years, yet she her body was moving around and she could hardly speak. He comes to understand she was dying of Huntington’s, and he had misjudged her his whole life. The link between the generations is especially important here, especially when Joe learns he will have a grandchild. When Joe starts to feel desperate and considers ending his own life, it is the example he will be setting to his children that leads him to stay living.

Inside the O’Briens is a book full of information about Huntington’s but more than that, it provides an example of how a family can deal well with what has been called the cruelest disease. That includes medical, legal, and psychological details. There are many emotional moments, and the relationship between Joe and his daughter Katie is very touching, especially when they start practicing yoga together, and he learns a new way to relate to his body.  Some of the plot seems a bit canned, and there’s a slight feeling that the story has been set out to show the variety of different permutations of reactions that are possible. But this is definitely a novel I would recommend for those wanting to get a personal perspective on Huntington’s disease. It raises many ethical issues and provide enough detail for readers to engage in them in a thorough way, so this would also be a useful text for a course in medical ethics.

© 2015 Christian Perring

Christian Perring, Professor of Philosophy, Dowling College, New York