THE BOOK OF KEHLS

Irish-American O’Hagan, born and raised in Queens, takes her heart and squeezes until it purely aches as she relates how her son’s life came to a premature close.

It was a terrible family legacy: her mother’s unknown uncles, and then her mother’s brother all had Duchenne Muscular Dystrophy and died young. DMD is hereditary, carried by females in one miserable gene that O’Hagan passes on to her younger son, Jamie. The author sings here of her father, a friend of the bottle who loved and battered and never shirked the hard acts of grace; of her mother, who sprinkled hope like fairy dust but also threw a Thanksgiving turkey at Dad when he arrived drunk for the festivities. But mostly she sings of the scalding innocence of Jamie. O’Hagan knew she was taking a chance when she got pregnant; she was a carrier and already had one healthy son. She tried denial when Jamie couldn’t negotiate the steps of the school bus, when he fell and fell and yelled for the other kids to wait up. Then she had to accept the horrible truth, and she searingly chronicles the essential “daily-ness” of DMD. She rejects the experts’ consoling advice that “successful adaptation does not depend on an accurate perception of reality”; she tells her son that “he [won’t] live to be old, that he shouldn’t worry about how long but instead, how deep.” Jamie partakes; O’Hagan slumps, overwhelmed by his effort and pain Her mother calls her on it: “Get up out of that goddam bed,” Mom snaps. “You’re falling down on the job.” Emotions come off the page like radioactive waves. When Jamie says, “I guess I’ll never have a girlfriend,” his mother can only reply, “I guess not.” Then, at age 24, Jamie dies in Long Island’s Stony Brook Hospital; she’s besieged by emptiness, grief, guilt, and a love that challenges her sanity, until she is able to focus on the husband and son she has left.

Rarely is a memoir so worth the terrible effort.