Wednesday, December 23, 2009

A father tells of his daughter's life with Turner's syndrome in new memoir

A review by Richard Baehr on the American Thinker blog:

At some point in our lives, we come to understand the concept of death, and then it happens to our family members or friends. In the normal course of events, there is a progression: Grandparents die first, then our parents, and then we go. If we are fortunate enough to have children, then they survive our death.

Some people have a different pattern: their children predecease them. I have never known a parent who lost a child and was not deeply affected by it. David Horowitz is one of those who buried a child. In 2008, his 44-year-old daughter Sarah died suddenly and alone.

Sarah was born with Turner Syndrome, a disease I had never heard of until I read the book Horowitz has written about his daughter's life. About one in 2,500 girls is born with Turner Syndrome, and it can make life miserable for those who have it.

"There are characteristic physical abnormalities, such as short stature, swelling, broad chest, low hairline, low-set ears, and webbed necks.[3] Girls with Turner syndrome typically experience gonadal dysfunction (non-working ovaries), which results in amenorrhea (absence of menstrual cycle) and sterility. Concurrent health concerns are also frequently present, including congenital heart disease, hypothyroidism (reduced hormone secretion by the thyroid), diabetes, vision problems, hearing concerns, and many autoimmune diseases.[4] Finally, a specific pattern of cognitive deficits is often observed, with particular difficulties in visuospatial, mathematical, and memory areas."[5]

Sarah experienced a high percentage of the afflictions described above. She walked slowly and with great discomfort. Her vision and hearing were very poor. As an adult, she stood but four feet, seven inches.

Horowitz's very moving book does not feast on the infirmities, but rather on the triumphs of his daughter's life. And they are many. Sarah Horowitz was a writer -- not a famous one like her father, but a gifted writer nonetheless. Horowitz devotes many pages in A Cracking of the Heart to the actual text of his daughter's journals, and stories, providing context for the events in his daughter's life associated with particular writings. A collection of her stories may follow.

The real story in Horowitz's book is about his daughter's irrepressible will to live, her experiences, and her contributions to those she felt were less fortunate than she. In an age where many compete to claim victim status, Sarah Horowitz would have none of it. She refused to see herself as needy or dependent. She valued her independence. A resident of San Francisco for most of her adult life, Sarah took six separate bus rides a day for three years to get from her home or her job to her night classes and back so as to earn a second masters degree. She traveled to other continents to offer her help -- to El Salvador to build homes for poor Catholics, to Uganda to teach impoverished children, to Mumbai to work with sexually abused Hindu girls. She protested capital punishment and worked with the homeless in San Francisco.

Sarah also was the glue in a family that had split apart. She was a big part of both her mother's and fathers' lives. Horowitz says Sarah was the sweetest of his four children, and he cannot recall her ever being mean to anyone. In the book, Horowitz painfully remembers long-past events in which he was insensitive to or upset his daughter. Some of these occurred when she was very young.

Because of her physical frailty, Sarah was slow at things. There are several stories in the book about those who became impatient with her and wanted to exclude her so she would not hold everyone else up. But there were also friends and others who would not hear of it. Sarah forced those who wanted to be with her to be patient. Patience, I think, is a virtue largely lost in our culture. Sarah's drive and courage enabled her to climb up Masada twice. It took a while, but far healthier, fitter people took the cable car to the top.

Later in her life, Sarah became a much more observant Jew. She walked miles to shul and back on Shabbat. She studied the Jewish texts with a rabbi who called her his most special student, and who sadly died soon after she did.

Like her father, Sarah was passionate about politics. Sarah was on the left, where David had been until his discovery that the Black Panthers had murdered a friend (and been miserable actors in lots of other ways). As David moved right, it was inevitable that he would have political disagreements with his daughter. But their debates and discussions were civil and respectful. Sarah often reviewed manuscripts of articles and books by her father with a critical eye that a political acolyte might not have. And sometimes they agreed. Sarah did not regard her father as a lost soul or lacking in character just because he was on the right. They simply did not agree on things.

Horowitz shared his daughter's first and only great political triumph. Sarah trudged through the ice and chill of December and January in Iowa two years back to work for Barack Obama's campaign for the nomination. It was Iowa that made Obama one of the front-runners for the nomination, and his success in this first caucus state led to similar victories in all but one of the caucus states that followed, providing his small margin of victory over Hillary Clinton. Horowitz understood the significance of Iowa and congratulated his daughter on playing a part in making history.

Two months later, Sarah Horowitz was gone. With A Cracking of the Heart, Horowitz tries to open his daughter's life to those who never knew her. The book is a magnificent tribute.

A Cracking of the Heart has not been reviewed by the major newspapers in America who still review many books. A similar boycott occurred with Horowitz's earlier book about dealing with a cancer diagnosis and the approaching end of one's life: The End of Time. In essence, because Horowitz is on the right, the papers on the left ignore him even when his books are not political. Instead, there are three more books on CIA torture and Guantanamo reviewed each week in the New York Times book review section. The editors are cheating themselves. They could learn from the generosity of spirit and decency of Sarah Horowitz. Maybe they can start by reading David Horowitz's eulogy for his daughter.