The Washington Post named Fragile Innocence one of the best non-fiction books of 2006.
Hillary Reston is 24 years old, the youngest of three children. Her brother and sister are healthy but Hillary has endured a mysterious illness that robbed her of language at age 2 and almost killed her as a child. Hillary's father, James Reston, Jr., a writer, historian, and a senior scholar at the Wilson Center, has written a memoir called Fragile Innocence, about his family's ordeal. At a Wilson Center book launch, he called it "a tale of the heart, of love, of loss, of coming to terms, and of hope."
When Hillary was 18-months old, following five days of high fever, Reston said, "an undefined evil seed invaded her brain" that would destroy her language. "She probably had about 200 words and we watched them drop away one by one," he said. The illness overtook a vivacious and verbal toddler, stripping away her ability to comprehend language, speak, or read, and resulted in a seizure condition that still exists, to a lesser extent, today. Then, as a young child, the "cocktail" of medicines Hillary was given to control her seizures caused her kidneys to fail and she would come to endure eight years of dialysis.
Hillary's illness remains a mystery—a continuing source of frustration for the family—but a joyous event did occur in 2002, a few months before her 21st birthday. After years of agonizing limbo on the transplant list, Hillary received a kidney from a young man who died in an accident in Iowa. "That profound experience made this book possible," said Reston, noting the bittersweet connection between his family's joy and another family's tragedy.
Though the book is not lengthy, it took Reston six years to write it. He said, "Writing about oneself, if you are honest, can be the hardest kind of writing, especially if you're writing about tragedy, loss, and difficulty." He also spoke of the challenge of portraying a three-dimensional character who cannot speak whose story must develop without dialogue. "We know [Hillary] to be a tough customer," he said. "Through her own resources, she pulled herself through."
In writing the book, he said he relied on his wife Denise's exceptional memory, admitting that as a woman and mother, she felt Hillary's illness most deeply. But he diligently adhered to a process of only talking with her about their memories for a half-hour each week, as "it was difficult to open those boxes we had closed before." Accuracy was imperative.
Reston drew inspiration in other memoirs, most notably one a father wrote about his handicapped son called A Personal Matter by Japanese writer Kenzaburo Oe, whom he had the opportunity to meet during a visit to Japan. Reston has discovered his own book resonates with people in distress. "It validates their own experience and suddenly it's ok to talk about it: the anger, isolation, confusion, and despair," he said.
Yet it has broader implications that give it universal appeal. The story raises numerous bioethical questions about stem cell research, gene therapy, and animal transplants. It also looks at how our society deals with the mentally retarded and handicapped, who constitute a sizeable part of the population. "Confronting such people can bring out the worst or the best in someone," Reston said, adding, "when Hillary walks in, it lights up the room."
Reston writes in his book, on page 170, "Whatever the world might think—that Hillary was subhuman or of lesser value, a ward of the state or a drag on society—she dominated her world in her full humanness and rich personhood." He further described her as "a social, convivial person who loved people."
This story is about much more than caring for a sick child, said commentator Walter Reich. He said it shows us that "in every human being—even the most compromised physically or mentally—there's a well of humanity and a capacity of human expression no less worthy, valuable, or remarkable than contained in anyone who enjoys robust, untrammeled health." He noted the severe challenges of caring for a chronically sick child—from medical, psychological, and financial to the social and familial hardships. Yet the family remained opposed to institutionalization. "After two decades of struggle, he [James Reston] gave her care, dignity, and the respect she deserves."
During Q&A, Reston commented on the toll Hillary's condition took on her siblings, whose needs always had to wait and who grew up in a chaotic environment. He described learning to compartmentalize his personal and professional life. And he spoke of the anguish of years of misdiagnosis and the wait for a transplant that was complicated by doctors insisting on putting available kidneys in healthy people.
One of Hillary's neurologists, Dr. Joan Conry, attended the book launch and spoke of the frustration of not having a diagnosis and questioning whether different medicines or treatment early on could have prevented the brain and kidney injuries.
Today, Hillary's condition is stable. She's employed by the Montgomery County school system as a paper shredder. She loves to solve puzzles and enjoys music.
"Hillary's story was not sad, but triumphant," Reston writes on page 109. "When a close friend offered his sympathy once, I cut him off. ‘Hillary is the soul of our family,' I said."
Drafted by Dana Steinberg