Hillary
"Hillary had become the heart of our family. We love her deeply, feel uncomfortable whenever we’re away from her for more than a few days, and celebrate her modest achievements..."
Hillary Rory McTier Reston was, we thought, the most verbal of our three children. It was hard to know for sure how many words she had acquired in the first eighteen months of her life, but my wife, Denise, thought it was in the 200 range. Tragically, in the summer of 1983 we watched them disappear one by one until they were reduced to “Da-Da” and “birdie” and then nothing. Some undefined, evil virus had invaded her brain, and besides destroying her language, this evil seed gave her terrible brain seizures from which she suffers to this day, 28 years later. As early on, the doctors tried aggressively to control her seizures with stout medication, her kidneys were implicated. We watched her second major system shut down as her kidney function declined until her kidneys failed completely. For eight long years she was on nightly dialysis until miraculously, in 2002, she received the life-saving gift of a kidney transplant at the University of Iowa Hospital.
This is a thumbnail of Hillary’s story, briskly told. The longer version became my little book about her and our life with her called Fragile Innocence which was published in 2005. The mail I received about that book far exceeded in amount and intensity any I had received for my other 15 books. It made me realize that, when a writer who has had a tragedy in his or her own life writes of that experience simply and honestly, it can offer connections with other families far and wide and help them to define and deal with their problems with more clarity. Other fine writers I admired had done the same with their profound difficulties: William Styron with his depression, Reynolds Price with his paraplegia, Joan Didion with the death of her husband and daughter. Our story was about one family’s attempts to deal with chronic illness, especially the emotional side. Over the years we have come know many families who are contending with far more dire circumstances than we were, and who were driven silently underground into an awful isolation. This discreet body of literature seems to help. Hillary had become the heart of our family. We love her deeply, feel uncomfortable whenever we’re away from her for more than a few days, and celebrate her modest achievements as if they were akin to climbing Mt. Everest or catching a monster fish. We are the lucky ones.
"A page turning read....Reston has turned the writer's lens on his own family to tell this intensely personal story."
--Washington Post Book World on Fragile Innocence
As I turned to writing my book about her, I did several side pieces along the way. Two of the essays below are the outgrowth of conferences I attended in Florence, Italy which were organized by Professor Cozimo Mazzoni, a professor of law at the University of Siena. Mazzoni has a great interest in the law for the disabled. “Joy Not Shared” was prompted by a visit I paid to Nobel Laureate, Kenzaburo Oe, in Tokyo whom I had sought out because he had written with brutal honesty about his own handicapped son in his book called A Personal Matter.
The op ed essay, “When Generosity Is Medically Necessary,” was written during the five weeks of Hillary’s recuperation after her transplant in Iowa City. It addresses the almost unfathomable generosity of the Gassman family whose athletic son, Jared, was killed in a racing accident at an Iowa state fair. Jared’s kidney now beats in Hillary’s body.
This is a thumbnail of Hillary’s story, briskly told. The longer version became my little book about her and our life with her called Fragile Innocence which was published in 2005. The mail I received about that book far exceeded in amount and intensity any I had received for my other 15 books. It made me realize that, when a writer who has had a tragedy in his or her own life writes of that experience simply and honestly, it can offer connections with other families far and wide and help them to define and deal with their problems with more clarity. Other fine writers I admired had done the same with their profound difficulties: William Styron with his depression, Reynolds Price with his paraplegia, Joan Didion with the death of her husband and daughter. Our story was about one family’s attempts to deal with chronic illness, especially the emotional side. Over the years we have come know many families who are contending with far more dire circumstances than we were, and who were driven silently underground into an awful isolation. This discreet body of literature seems to help. Hillary had become the heart of our family. We love her deeply, feel uncomfortable whenever we’re away from her for more than a few days, and celebrate her modest achievements as if they were akin to climbing Mt. Everest or catching a monster fish. We are the lucky ones.
"A page turning read....Reston has turned the writer's lens on his own family to tell this intensely personal story."
--Washington Post Book World on Fragile Innocence
As I turned to writing my book about her, I did several side pieces along the way. Two of the essays below are the outgrowth of conferences I attended in Florence, Italy which were organized by Professor Cozimo Mazzoni, a professor of law at the University of Siena. Mazzoni has a great interest in the law for the disabled. “Joy Not Shared” was prompted by a visit I paid to Nobel Laureate, Kenzaburo Oe, in Tokyo whom I had sought out because he had written with brutal honesty about his own handicapped son in his book called A Personal Matter.
The op ed essay, “When Generosity Is Medically Necessary,” was written during the five weeks of Hillary’s recuperation after her transplant in Iowa City. It addresses the almost unfathomable generosity of the Gassman family whose athletic son, Jared, was killed in a racing accident at an Iowa state fair. Jared’s kidney now beats in Hillary’s body.
Articles:
“A Joy Not Shared”
Appeared in New York Times Magazine, December 7, 1986 view PDF
"Nude Pigs and Headless Clones"
Lecture in Florence, Italy, published in 2002 view PDF
When Generosity Is Medically Necessary
Appeared in New York Times, Aug 7, 2002; pg. A17 view PDF
"The Disabled Body"
Second lecture in Florence, Italy, Appeared in, Per Uno Statuto del Corpo. published in 2008 view PDF
"Fiery Run, Virginia"
Appeared in Piedmont Virginian. published in 2020 view article
Appeared in New York Times Magazine, December 7, 1986 view PDF
"Nude Pigs and Headless Clones"
Lecture in Florence, Italy, published in 2002 view PDF
When Generosity Is Medically Necessary
Appeared in New York Times, Aug 7, 2002; pg. A17 view PDF
"The Disabled Body"
Second lecture in Florence, Italy, Appeared in, Per Uno Statuto del Corpo. published in 2008 view PDF
"Fiery Run, Virginia"
Appeared in Piedmont Virginian. published in 2020 view article