The pain in these pages is palpable.
Lisa H. was born with neurofibromatosis, the same hideously disfiguring genetic disorder that afflicted Joseph Merrick, the 19th-Century Londoner who came to be known as “the Elephant Man.” Lisa’s face was covered with tumors--large, pendulous tumors--that transformed her face into a mask so grotesque that she was teased and tormented with excruciating frequency throughout her childhood and adolescence.
Once, a neighbor boy, who came up behind Lisa while she was out walking her dog, said to a friend, “Now watch, I’ll say hello to her, and you can take a quick look to see how ugly she is.” On another occasion, in a department store, a woman screamed at Lisa, “You ought to be in a cage.” On yet another day, a school bus driver leaned over and said to her, “My God, you are the ugliest thing I have ever seen in my life.” On that same school bus, many of Lisa’s classmates “welcomed” her each morning by shouting, “Here comes the monster, here comes the monster.”
The catalogue of cruelties compiled by Richard Severo is almost too painful to read. But this book is no catalogue, however complete; it is a moving, powerful, sensitively written account of Lisa’s life, leading up to and including the more than eight hours of radical surgery she underwent in 1981, at age 21, in a desperate effort to find some measure of normalcy in a life of agony. Severo’s account of the discussions and decisions preceding the surgery and, especially, his 14-page chapter on the surgery itself present a remarkably detailed and compelling portrait of courage (Lisa’s) and caring (her doctors’) that ought to be required reading for journalism and medical school students alike.
Lisa’s doctors were not alone in their abiding compassion for her, of course. Lisa’s family and a few friends and schoolteachers also gave her love, support and encouragement. Indeed, among the most touching passages in the book are those that tell of Lisa’s near-normal childhood friendships with a classmate named Robert and a neighbor named Nancy--and of the time when Lisa’s head was shaved for one of her 16 different operations, and her sister Diane had her head shaved, too, then proposed “a race, to see who could grow hair back the fastest.”
Although “Lisa H.” could be seen as a book of extremes--cruelty in some quarters, compassion in others--Severo also covers quite nicely the gray areas, most notably those involving the strains imposed on Lisa’s family by her condition and by her continuing determination to have doctors try to do something about that condition, despite the attendant risks (for her) and the concomitant stress and worry (for those around her).
Ultimately, however, the book is “Lisa’s book,” as Severo rightly says in a brief epilogue, and, as such, it stands as a monument to the indomitability of the human spirit--a living memorial to a living person, a brave, determined young woman who has not allowed herself to surrender to the bitterness, depression and raw fury that would be as understandable as it would be inevitable in so many victims of far less suffering.
My only concern about this book has nothing to do with what appears between its covers. Severo, a reporter for the New York Times, became a controversial figure in some journalistic circles last year when he was the subject of many stories (including one I wrote for the Los Angeles Times) detailing his feud with the New York Times over the publication of this book. Because the book grew out of a reporting assignment for the New York Times, his editors there thought the book should be published by New York Times Books. Severo sold the book to Harper & Row instead, when that publisher offered him more money. Severo was subsequently transferred from the paper’s science section to the general reporting staff--a move that he said was punitive and that, he said, was accompanied by other punitive behavior. Times editors denied his charges, and several months of formal union arbitration hearings--and private name-calling on both sides--have ensued.
Severo’s only reference in “Lisa H.” to his ongoing dispute with his editors--and it’s an oblique, “deniable” reference--comes when Severo is writing about one of Lisa’s doctors and a friend who is a well-known symphony conductor. “Pure autocracy,” Severo writes, is a rare quality that “symphony conductors share only with whatever extant divine-right potentates there might be and a few senior editors of very large metropolitan newspapers.”
“Lisa H."--the name Severo gave the young woman he wrote about--is a most special book; I hope that all the controversy about its provenance, which is sure to resurface with the publication of the book, will not obscure the magnitude of Lisa’s ordeal--and of Severo’s accomplishment in describing it so skillfully. His story of her life deserves to be read on its own terms.