IN 1981, 21-year-old Lisa H. elected to undergo radical plastic surgery. For more than eight hours, a University of Pennsylvania medical team cut away at the massive, vascular tumors that all but buried the features of her face; removed her left eye, which had been swollen by internal tumor growth to three times its normal size; rebuilt her nose with bone taken from one of her ribs; and finally performed a risky and unplanned craniotomy, opening the skull and pushing aside the brain to construct a bone barrier that would protect her remaining eye.
Although this was the most dangerous and dramatic surgery Lisa H. had ever undergone, it was not her first (nor would it be her last) visit to the operating room. Born with eyelids "red like fire," she was only four days old when ophthalmologist Harold Scheie operated to relieve pressure on the infant's eyes caused by congenital glaucoma -- a procedure he would repeat five times during the following year as the medical community pondered the cause of the disorder. The cause soon became all too apparent: Lisa H. suffered a rare and incurable genetic disorder called neurofibromatosis.
Most people are acquainted with neurofibromatosis through the story of Joseph Merrick, better known as the Elephant Man, a 19th-century Londoner who had one of the most disfiguring cases of neurofibromatosis ever recorded; a sideshow freak and later the hit of London society, the gentle Merrick's story has been passed down through scientific monograph, anthropological study, stage play and, most recently, a popular film. But as journalist Richard Severo makes clear in his fine new book, Lisa H., there is nothing romantic about the insidious neurofibromas or the havoc they wreak on body and mind.
The cases of Merrick and Lisa actually offer an informative comparison, for the two have much in common but are also dissimilar in important ways. Both Merrick and Lisa suffered especially severe cases of neurofibromatosis, causing extreme physical pain (Lisa cried every day for the first two years of her life) and emotional trauma; both of their lives, too, are chronicles of survival that can only be called heroic. Interestingly, both Merrick and Lisa owe their survival, at least in part, to very supportive mothers.
Indeed, the story of Mary, Lisa's mother, is nearly as captivating as that of Lisa herself; a reluctant mother again at age 44, a hardworking waitress who is the principal wage earner in the family, she remains an indefatigable optimist in the face of her daughter's travails and in her limited spare time carries on a relentless search for miracles, whether through vitamin therapy, faith healing or reflexology (therapy involving foot massage). She derives remarkable emotional and actual support from three older daughters; the youngest, Diane, even became a surrogate mother to Lisa (Lisa calls her Mommyana), assuming primary responsibility for comforting the crying baby at night, later taking her along on dates, and even shaving her own head in sympathy when Lisa's head is shaved for surgery. Sadly, Lisa also had in common with Merrick a disengaged father, and Harry H. remains a shadowy figure in Severo's account, a man who by his own admission does not want to think about his unfortunate daughter's troubles.
THE TWO cases differ somewhat medically. Where Merrick had tumors all over his body, including part of his head, Lisa's tumors are confined to her face; but they devoured it, both sides. And perhaps the most significant difference: Whereas medical science had not advanced far enough to offer Merrick the option of corrective surgery, Lisa was able -- with considerable medical risk -- to have her appearance altered. Severo's account builds steadily toward the day of Lisa's surgery, and that climactic episode is riveting.
Severo clearly admires the cast of surgeons, anesthesiologists and nurses involved in Lisa's case, as much for their compassion as for their consummate medical skills. He is especially admiring of Linton Whitaker, Lisa's chief plastic surgeon, a man who makes his living tinkering with the elements of feminine beauty, making fine adjustments to the fullness of the lip or the thrust of the nose; but who puts aside aesthetics and plans the boldest operation of his life to realize Lisa's much more modest goal: "to be plain enough to be left alone."
The fact that a 21-year-old woman would put herself through life-threatening surgery to become plain (she had 14 operations, all told) points to a final experience regrettably shared by Merrick and Lisa H.: Both were subjected over and over again to insensitive, on occasion hateful, treatment by society. There are caring people in Severo's account (especially memorable is Verna Mitros, an aggressive altruist who puts Lisa in touch with Whitaker), but much more striking (by their sheer number if nothing else) are those who delight in calling attention to Lisa's deformity. If Severo's sad account is accurate, then we cannot as a society fancy ourselves any more humane than the 19th-century Londoners who turned out to gawk at Merrick.
One more thing: the reputation of Lisa H. in the publishing industry precedes the book itself. Severo, a veteran New York Times reporter, originally reported on Lisa's surgery in the Times and the book manuscript that grew out of the early reports subsequently became the center of a company policy dispute, with the paper's editor, A.M. Rosenthal, claiming that Times Books had the right to publish Lisa H. and Severo disagreeing. Severo went with a hgher paying house, and he was soon bumped from his science writing beat to the city desk; whether or not those two moves were related is still under dispute. It's an interesting story, but it is not as interesting as Lisa H.'s and shouldn't distract from the welcome publication of this book.