At eighteen months Hillary Reston, a happy, healthy toddler, was struck by a remarkably high fever. On the advice of her doctor, her parents, James Reston, Jr., and Denise Leary, administered Tylenol and anxiously waited for the fever to subside. Five days later it did, but the damage was done. Over the course of the next five months their bubbly, highly verbal child was radically and irrevocably changed. Worse yet, no doctor could explain what evil and still unidentified force had stolen Hillary’s ability to speak or understand language, hurtled her into a seemingly endless cycle of seizures, destroyed her kidneys, and taken her to the very brink of death.
For her parents, discovering what had happened to their child and how to assure the quality of her life became an obsession. This quest for answers would take them from the nation’s hospitals to the office of a pioneering geneticist in Texas and the vaulted halls of the National Institutes of Health.
This very intimate story also personalizes some of the most daunting ethical issues of medicine that society faces today, including stem cell research, animal organ transplantation, diagnosis with the Human Genome Map, and reproductive and therapeutic cloning. Hillary gives these immensely complicated issues a human face, and they are pondered by Reston as a reporter, a thinker, and a father.
In Fragile Innocence author James Reston, Jr., invites us inside his family, candidly sharing the joys and sorrows of raising Hillary.
“This is a book about the first twenty-one years of a child named Hillary. It tells of her battle to live and our family’s struggle to help her survive as best we could, after an evil and still unidentified force robbed her of her language at the age of two, hurtled her into a seemingly endless cycle of brain storms, destroyed her kidneys, and took her to the very brink of death. That is the first half of the story, when life itself was at stake.” —From the Preface
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The year 1981 was the end of an era in our personal lives. But we did not know yet that a much-longer, more-complicated era was about to begin. For ten years, from the moment I married that willowy, tough-minded, high-spirited, and high-cheekboned girl from the Bronx in a retrograde ceremony in the Blue Ridge Mountains, we had lived the often ecstatic, sometimes stormy, perfectly ordinary existence of two young lovers trying to solidify our union as we started our careers and our family outside Chapel Hill, North Carolina. In that decade I had published five books, two of them novels, launched my first play, and taught creative writing at the University of North Carolina. At the end of the decade, we had two children: Maeve, who arrived in 1978 as the envy of the Gerber baby advertisers, and then Devin, who came floppy-eared in 1980, as the fastest crawler in the East.
Denise is seven years my younger. In the twilight of late sixties activism we met in New York City, where together we worked in the spirit of the times at a poverty program called the Neighborhood Youth Corps. The program was run by one of Mayor John Lindsay's most controversial associates, Rabbi Sam Schrage. A stocky, rotund man of Brazilian extraction, he was the community leader in Crown Heights, a tense neighborhood deep in Brooklyn, evenly split between Jews and blacks. Amid the ravages of constant street battles in Crown Heights, he had organized the Maccabees, a private defense force for the Jewish community, and thus he was a polarizing figure for blacks.
For us, however, he was a shadchan. In his matchmaking he was persistent and effective, and after we were engaged, we asked him to marry us. In sorrow and in self-interest he declined. It would never do for our marriage to appear in the New York Times, he said, with controversial Rabbi Schrage as the officiate. We were Christian. For him to tie our knot would destroy his standing in his community. But he would come to our ceremony, he promised, even if it was to be held in the terrifying darkness of rural Virginia, so long as he could get there before sundown on Friday.
In our first years in North Carolina, Denise completed her law degree at Duke and received her basic training in the dusty, elemental courtrooms of the rural South. Late in the 1970s she reconnected with her great mentor, Chuck Morgan, the powerful and brilliant Alabamian who had been run out of Birmingham for his passionate criticism of the local establishment after the bombing of the Sixteenth Street Baptist Church and had gone on to be such a champion of civil rights. Chuck had made it possible for Denise to hold on to her profession by her fingernails, by doing research projects and writing briefs from home, while she concentrated on the needs of her children.
But Denise, raised in a small apartment in the northeast Bronx and educated in Boston, was by nature a big-city girl. She had never been to the South when I dragged her there, by way of Berea, Kentucky, in our first year of married life. She had never really taken to the place. The South of 1971 still had ugly vestiges of racism, as well as blind patriotism in the face of Vietnam outrages, and a sexism that treated "the little lady from up North" with undisguised contempt. In her law school class she was one of 28 women in a class of 120. The idealism of the 1960s still influenced most of the class, men and women, and this majority saw the law as a way to further civil rights and to harness corporate greed in the spirit of Teddy Roosevelt's trustbusters. But a growing contingent was made up of pasty yuppies with ten-day haircuts and briefcases, with their eye on Wall Street and corporate America. This group was epitomized by a pudgy, walleyed nerd from Illinois named Ken Starr.
Southern racism and chauvinism offended Denise viscerally, as they did me. But I was more involved with the pleasures and amusements of Southern living, partly because I had been partaking of them a lot longer. By 1981 I had spent fourteen years in the South, the bulk of my adult life up until that time, and considered myself, at least in part, an adoptive Southerner. Inevitably, when I came north, my friends remarked upon the soft Southern lilt that had invaded my speech over those years. As a college student at UNC, I had been through the heady desegregation struggles of the early sixties, and so I knew what raw, open, sanctioned racism was like and had witnessed the remarkable changes.
After my three years in the Army (1965-68), I had entered the vibrant literary scene of North Carolina, the scene dominated by a handsome, vigorous, upright, and wickedly funny Reynolds Price and festooned with Lee Smith, Doris Betts, and, later, a young Allan Gurganus with hair. In the South of their birth, of course, they had found much that was touching and funny. As an outsider, I had often enjoyed jolly times with them, as they spun their tales about the eccentric characters of their youth. But my roots were in Washington, in privilege and plenty, the scion of a famous journalist and a beautiful, vivacious mother. My childhood characters were politicians and power brokers and tough-talking, hard-drinking newsmen. The Ivy League had seemed my natural course, but a wonderful scholarship had lured me south, and with it I became part of the region's inevitable dilution.
I had no interest in becoming a "Southern writer." Destined forever to be an outsider, that was the way I preferred it. But I loved the wit and lore of these superior writers, and was never able quite to replicate their bonhomie when I left the South. In that transitional decade between Johnson and Reagan, even the hulking ghost of Thomas Wolfe lingered in the shadows, however indistinctly. I could still thrill to its presence, and it pleased me to premiere my first play on the very boards of the Old Playmakers Theatre, where Wolfe had performed as a student actor in the 1920s.
My view of Dixie was thus more textured than Denise's. Courthouse louts rather than literati populated her early lawyer's life. It was harder for her to find humor in the South's idiosyncrasies.
The year 1981 saw the publication of the hardest book I ever wrote, or ever would write: my narrative of the Jonestown mass suicide in Guyana in 1978. To be good, a book must be the product of an author's obsession, where a subject grabs him like a pit bull and never lets go until the last page proof is polished. For me Jonestown had been a three-year obsession. Its challenge was to comprehend the incomprehensible, to imagine the unimaginable, and to write about it without resorting to cant. The story was horrible, even soul-withering, but it was also utterly fascinating.
Both literary and political impulses drew me to it. Its parallel to Conrad's Heart of Darkness was obvious, but here was life imitating and even improving upon art. To me Jones was a bolder, larger, more compelling figure than Kurtz, and a more terrifying one. He was real, and he was an American monster, of my age, and ironically with some of my same passions. In the story I saw the possibility of making tangible what Conrad could only imagine.
But the politics and the psychology behind the story drew me to the saga as much as its literary connection. How could this madman, Jim Jones, have lured so many bright and well-intentioned young people like myself into his web, using the very same arguments about racial harmony and antimilitarism that moved me? And why had they not bolted instead of bowing down when they watched Jones go mad before their very eyes? In this grisly tale lay the eternal question about the moment of disobedience in the face of crime and immorality. There was plenty in the Jonestown story to sustain a three-year obsession. As it turned out, the obsession lasted a few years longer than that, as I dealt with the material first in a book, then in a radio documentary, then in a play, and finally in a libretto for an opera.
But the effort exhausted me physically and emotionally, and, apart from my dark moods that strained my young marriage, it had brought me to the brink of madness. Later I would come to know that other Jonestown veterans had gone off the deep end. There was something about the story that got inside one's head and gravitated to that part of the brain where the wiring is weak and subject to short circuit. One reporter, I learned, had stopped over in Barbados after leaving Guyana and took a room in a beachside tower hotel on the fourteenth floor. During the night, he had moved all the furniture in the room against the door to blockade Jones's nightmare goons, whom he imagined to be outside his door and about to break in on him. That reporter never recovered from the experience.
I had flown to Guyana five days after the mass suicide. Shortly afterward, as the only pure author in a planeload of war-hardened newsmen such as Peter Arnett, I helicoptered into Jonestown after the Guyanese army and the FBI had taken out the last body bag.
That the bodies were gone made the scene more terrifying, for one had to imagine how it had been only a few short days before. Around the buildings they had plowed a swathe as if it were some jacklegged cordon sanitaire. If I was the only author there, I was also a new father, for Maeve was then ten months old. Outside the plowed perimeter, I walked in tall grass, and came upon the discarded potties and milk bottles and toddler toys of dead children . . . and quietly went insane.
A few days later when I landed in Chapel Hill and swept Maeve up into my arms, I knew I was in serious trouble. And so I rushed to North Carolina Memorial Hospital and barged into the office of the only psychiatrist I knew in those days. Before the wise and accomplished Dr. Maury Lipton, I broke down in a total collapse. About that first session, in which he saved my sanity, I remember best the oranges on his desk, which he made me peel slowly as I blubbered on and on about my horror and my confusion. Eventually he talked me through my "panic attack."
In the subsequent three years, I would consult with Maury Lipton occasionally as I tried to make sense of Jonestown. But never were those other sessions as dangerous as that first one.
In March 1981, at our twenty-two-acre farm named Monarch Glade--named for the monarch butterflies that flooded the place in September, and its secluded, pine-surrounded field off the road--I finally opened the box that contained my author copies of Our Father Who Art in Hell: The Life and Death of Jim Jones. That dark journey through my own madness and the madness of a thousand others was finally over, I thought. And in opening that box I made a promise to myself: never again would I write about so difficult and depressing a subject.
Somehow the act of both opening that box and shutting it at the same time called for us to do something big, something life-affirming, in our personal life. How could we go on as before, after this? At last, after ten years of using every defense from yammering to four corners, I gave in to Denise's full-court press to leave North Carolina for her beloved New York City. I regarded my offer as temporary, perhaps a year or two, before we would return, city-hardened and big-time-connected, to Monarch Glade. I did not easily leave our eccentric Japanese house, which we had designed together with our tobacco-chomping architect, or the separate study way down the field all for me. Somehow I knew that I would never again have so perfect a writer's circumstance. Chapel Hill was supposed to be Blue Heaven. I should have known that once Denise got me out of the South, she was never going back.
Pulling up stakes for New York was a big step and may even have been profound, but it was not exactly life-affirming--not, at least, in the sense of providing an antidote to Jim Jones's death wishes. For that department we left things to chance and surprise. And as chance would have it, Denise's father was coming down to our tiny, open Japanese house, with its loft arrangement where we slept in a bed I had made from old eaves and plywood. The house had only one door you could close for privacy, and that had become the room of our two toddlers. Her father would be sleeping in the foldout couch below our loft. Denise made her calculations.
Math was never her strong suit. And so in those few days when the tree frogs began their peeping in the nearby bog and the whippoorwill could be heard deep in the night, Hillary was conceived.
We learned on tax day. By Denise's memory we had characteristically opposite reactions. She was overwhelmed at the idea not just of having a third child on our modest budget, which was already stretched to the maximum, but a third child so close in age to the other two. This sensible reaction brought her close to tears. I, by contrast, broke out into hysterical laughter at the news, and had to be calmed down some minutes later before I received a punch in the nose.
In mid-July we left Chapel Hill for New York. For a month, with a grand vista of the Hudson River, we camped out in the commodious apartment of William Sloane Coffin, who had graciously offered his place to us while he was on vacation from his job as senior minister at Riverside Church. I was Reverend Coffin's longtime fan. I admired his activism in civil rights and his opposition to the Vietnam War, and I had spent a wonderful evening with him a few years before at Yale when he was still chaplain there. His living room was full of boisterous, fun-loving students, and the evening was replete with laughter, good conversation, games, and music, with Coffin himself holding forth forcefully on the piano. We had a strange bond. As I had been a military intelligence officer in the Army, he had been in the CIA before he went into the ministry. It was evident from our talks that in some deep emotional sense he thought of his ministry as a compensation for whatever dire things he may have done as a spook.
A year and a half later, I learned something very different from Coffin.
Most Helpful Customer Reviews
While I have to agree with some other reviewers who found Reston's account of his daughter's struggle against some pretty awful circumstances to be curiously bloodless at times, it is nevertheless a powerful story, well-told, of a family's fight for their beloved little girl. Reston's struggle against a sometimes incompetent medical world was particularly vivid to me, particularly in how, at every turn, his family was faced with unwavering "expert" diagnostic conclusions, many of which were ultimately wrong and occasionally to the extreme detriment of his daughter. This is quite simply a very important book, and one that I'm glad I finally got around to reading. (In the interest of full disclosure, I should mention that I read this book specifically because I was curious as to how Reston's narrative would compare to my own in my book, published about two years later. As a result, I suspect that came into this book predisposed to like it.)
A must read - for what it doesn't say as much as what it does. Hillary Reston, the human being, died at the age of 18 months. What remained was an uncontrollable, non cognizant shell, which the parents blithely inflict on society. While the book shows how dearly the parents love their child, it also shows an appalling lack of parenting skills, both for their handicapped and normal children. The true victims in this horrifying story are the two normal children. Be prepared to be repelled.
I saw the review for this book in the Washington Post and looked for it when I was at the bookstore later that day. I knew it would be good story but I had no idea how good. Sat down in the store and read it cover to cover in two hours. I continue to reread parts frequently. What Hillary's family endured is truly extraordinary and the relatively happy ending to the story is comforting but be prepared - the book is still incredibly sad. It is not only personal, there are valuable messages it imparts, most importantly 1) the value of all human beings regardless of abilities 2) the critical need for allowing stem cell research to progress.
I picked it up after it was revived in People and Entertainment magazines of all places. I stayed up all night reading and could not put it down. The book is insightful, at times funny, and heartbreaking. You get a real sense of what the family went through in terms of guilt, embarrassment, and worry. You feel and want the best for the siblings. A must read.