‘Inside the O’Briens’: an engaging, compassionate look at a terrifying disease


Lisa Genova is a neuroscientist-turned-writer with a PhD from Harvard. Her first and most popular novel to date, Still Alice, was self-published to begin with, but has since become a New York Time bestseller and has recently been turned into a well-received movie. Genova style is to use her background as a springboard for her writing- Still Alice told a powerful story of mental deterioration from the perspective of an early-onset Alzheimer’s patient’s perspective.

With Inside the O’Briens, Genova switches from the mental deterioration of Alzheimer’s to the even more frightening but thankfully rarer Huntington’s disease. Huntington’s cruelly serves up a double whammy of cognitive decline and deterioration of voluntary muscle control, while also causing a host of involuntary, spastic movements. There is no cure, few treatment options for symptom management, and the disease is ultimately fatal, usually either from heart disease or pneumonia stemming from swallowing or coughing difficulties, or many Huntington’s deaths are simply outright suicides.

It is from these grim realities that Genova crafts the story of a dedicated Boston cop and family man who is diagnosed with the disease at age 44. Similar to Still Alice, much of the story is told from Joe O’Brien’s perspective. Using her knowledge and background experience with the disease, Genova helps us to understand with Joe’s story what it could be like for someone facing this prognosis. Her portrayal of his despair and confusion, along with his shame when many mistake his disease progression for drug or alcohol abuse prompt us all to compassion and to suspend judgment, especially with incomplete understanding. Skipp Sudduth’s narration is superb, and his voice for Joe particularly brings this character to life. Experiencing this type of pseudo-biographical story especially via an audio performance strengthens the bond between the protagonist and the reader.

Where Inside the O’Briens transcends Still Alice is with Genova’s inclusion of the family’s story, particularly that of the daughter Katie. As if Huntington’s didn’t offer up enough horror, the disease is inherited with a 50% probability. What follows is a well-articulated and potent dialogue about the function of genetic testing and the personal philosophical implications.

As it has many times in the past, science has galloped forward with wonderful new possibilities, however many of these possibilities carry with them a Pandora’s box of social implications. Genetic, and its downstream cousins, proteomic and metabolomic, testing are among the current breakthroughs bringing remarkable benefits with complicated issues. All is well and good if a positive test result leads to reasonably straightforward actions of prevention or delay of a disease. But what if the positive test means something drastic such as a double mastectomy from a BRCA breast cancer gene result? Or, even worse, the permanent Damoclean sword of Huntington’s?

Genova’s gift is to blend her excellent storytelling with her knowledge of complex neurological diseases to the effect of enhancing her reader’s understanding and empathy for those suffering from these conditions.

About Andrea Sefler

Andrea Sefler
Andrea is a consultant and technical writer for various scientific software and instrumentation companies. She has a Ph.D. in chemistry from Berkeley and has never met a genre of music or books that she hasn’t liked. As a gamer since the days of the Apple II, Andrea can relate any number of hair-raising tales about role-playing games stored on 360 kB 5.25” floppy disks and may, someday, put them to paper.

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