SEARCH for Huntington’s Disease on YouTube and you’ll find montages of devastation and despair, elegies for those who succumbed to this vicious disease, composed by blood relations who carry the genetic inheritance of Huntington’s. A genetic neurodegenerative disorder, Huntington’s causes the progressive breakdown of nerve cells in the brain, affecting muscle coordination and triggering uncontrolled movement: involuntary jerks and spasms are accompanied by the loss of control over voluntary movements, including speaking and swallowing.

Cognitive and psychiatric disorders accompany these movement disorders. The nonsensical, distressingly persistent motion — the technical term for it is ‘chorea’ — of a Huntington patient is graphically captured in these YouTube videos. Chorea is the star of the show, the sum of the disease to an onlooker, and it is as a counterpoint to this flamboyant exterior display that Lisa Genova’s book, about a Boston cop diagnosed with Huntington’s disease, is titled Inside the O’ Briens.

Joe O’ Brien is a Boston cop, who loves his wife, cherishes his family — consisting of his daughters, Meghan and Katie, his sons JJ and Patrick, and JJ’s wife, Colleen — and has a complicated relationship with the Red Sox. Joe’s ambition is no more than to see the happiness of his children and provide well for his wife and at the beginning of the book, we witness the ordinary blessings of his life, only partly qualified by its small worries. He practically has epiphanies of gratitude. While sitting round his table for Sunday supper with his children, “He takes in the ordinary scene at their modest table … and a wave of gratitude swells inside him so suddenly, he doesn’t have time to brace himself. He feels the full magnitude of it pressing against the inner wall of his chest, and he exhales hard through clenched teeth to relieve some of the pressure.”

Genova, whose bestselling novel Still Alice was the basis for the award-winning movie of the same name, keeps us in a state of knowing suspense, and minor details foreshadow the horror that is to follow. While on duty as a police officer, Joe is so deeply affected by the body of a teenage girl in a dumpster that he finds himself trembling violently hours later. He puts it down to his traumatising experience; as readers, we see early symptoms of Huntington’s.

But alas, all this delicious suspense falls away soon and Inside the O’ Briens takes a sharp veer towards realism, developing as a slow-paced family drama, where the action is much too thin and the main character is Huntington’s.

This makes its grand appearance when, during a police drill, Joe repeatedly keeps wrecking the entire formation by turning the wrong way. Expecting a diagnosis of a faulty knee, Joe is stunned when he is handed the Huntington sentence, and told that he has barely a decade more to live. Worse: each of his children has a 50 per cent chance of inheriting it.

As the O’ Briens grapple with this life-altering knowledge, Genova narrates the ensuing family drama with compassion and tenderness, patiently unpeeling layers to reveal the innermost human spirit, untainted by disease. From Joe, the narrative baton passes to his youngest daughter, 21-year-old Katie. Katie is a yoga teacher, and she’s dating a man of whom her family would disapprove.

As she tries to come to a decision about her life and love, everything is thrown off-kilter by the prospect of her father being incapacitated for years before dying a slow, painful death. It is a double purgatory: to witness the destruction of the man she looks up to, knowing that she might go the same way. Interspersed through Joe and Katie’s accounts are short, coldly medical descriptions of the different complications of Huntington’s; taken with the account of the O’ Briens’ suffering, these calm, formal passages have a bone-chilling effect.

Genova nails the tone of a 44-year-old policeman; the crude vocabulary initially gets in the way since it runs counter to Genova’s thoughtful, elegant writing style, but eventually, as readers, we realise that we are inside Joe’s head and the F-bombs are part of his natural thought process. Katie’s tone as the insecure youngest sibling, always under the shadow of her ‘perfect’ elder sister, is also well-handled. In writing about Joe, Genova makes us see the destruction wreaked by this disorder, not through the lens of an outsider, but from a perch inside Joe’s head. And, unlike the rest of his body, Joe’s head is a place of relative calm until — and even after — the intrusion of Huntington.

As he watches in incredulity at his own feet moving in a direction opposite to what he has willed them, we watch with him; when he is told that his arm is straying to where it has no business, we feel the same rude jolt that he does. The most poignant passages are those in which Joe has flashbacks of his own mother, who died at Tewksbury State Hospital — the very words conjure a grim, unforgiving end — when Joe was 12.

Ruth’s ailment had not been recognised as Huntington’s at the time and she was supposed to have been an alcoholic. When Joe relives his memories of his mother, remembering his shame and wretchedness as a boy and then re-interpreting them in the light of his own condition, the writing is unbearably moving. “She’s wearing a short-sleeved blue shirt, swimming on her emaciated frame, a fluorescent-yellow paper bracelet sporting the words FALL RISK around her translucent wrist. Her wrists are pronated, her bony fingers curled and rigid.”

So deeply immersed do we become in the lives of the O’ Briens that as readers we may feel the need for a reprieve. Many of the scenes are set at the kitchen table in Joe’s house, and the rawness of the exchanges among the family members — most of these conversations are loaded, brimming as much with resentment, and jealousy as with love and tenderness — discomfit the reader.

If there is a complaint about the book, it is its sluggish pace. Action and dialogue interrupt the characters’ stream-of-consciousness-like meanderings. The present tense in which Genova chooses to write also deadens the narrative. Most of the time, we are inside one or the other characters’ head. This is not always a bad thing but there are far too many static scenes in which we just keep going over the questions and doubts in Katie’s or Joe’s head.

Genova’s achievement lies in making what should be a depressing tale oddly life-affirming and infused with hope. As the full weight of the reality of Huntington’s disease bears down on the O’ Briens, it reveals the fault lines in their relationships but also gives them the strength and love they never knew they had.

The reviewer is a Karachi-based freelance writer and critic.

Inside the O’ Briens

(NOVEL)

By Lisa Genova

Gallery Books, US

ISBN 978-1476717777

352 pp.