LISA H.: The True Story of an Extraordinary and Courageous Woman

In 1981, when she was 21-years-old, Lisa H. underwent more than eight hours of surgery to remove massive tumors that obscured her face. She suffers from a disease called neurofibromatosis (the ""Elephant Man"" disease of Joseph Merrick), which in Lisa not only produced the ghastly, swiftly growing fleshy tumors, but also impaired her facial nerve function and partially blinded her in both eyes. Severo, the reporter who initially wrote about Lisa for the New York Times, here expands the story to tell us about Lisa's life from early childhood (there were warning signs at birth, but the tumor growth and disfigurement began at age two or three) up to and through her latest extensive surgery (the results, apparently, are equivocal). The medical details are appalling: repeated operations to remove tumors have endangered Lisa's life (from blood loss--the growths are highly vascular); severe glaucoma, added to the tumors, has gradually obscured her eyesight. But the real story here, sickeningly, is Lisa's treatment at the hands of other people: neighbors, schoolmates, and strangers were not just stunned or frightened by the sight of her, but literally tortured Lisa for her appearance. Severo makes some misguided attempts to hook into the meaning of beauty in our culture: a superficial explanation that comes across almost as an excuse. Lisa herself has no thoughts of beauty, only nearer-normalcy which would allow her to interact with others outside her family (she is, understandably, a recluse). Severo includes a lot of information about neurofibromatosis (there is a self-help group), with riveting surgical and medical details. But the real story is sad, brave, lonely Lisa--and what other people have done to her.