An Uncertain Inheritance (2007)

Writers On Caring for Family
by Nell Casey
From Publishers Weekly: Casey, a mental health journalist and editor (Unholy Ghost: Writers on Depression) has collected a remarkable array of mostly original essays by talented writers on being cared for themselves and caring for parents, children and spouses with illnesses as varied as depression and brain injuries. The writers have faced age-old dilemmas: for instance, novelist Julia Glass grapples with her own mortality and tries to raise two young children while undergoing chemotherapy for breast cancer. Other essays venture into more modern problems: Julia Alvarez and Anne Landsman both struggle to help parents who live in other countries. Many of the essays are beautiful and all are moving, but they are also relentless. The tales of cancer, multiple sclerosis and Alzheimer's start to blur together, no matter how artfully told. Sam Lipsyte's irreverent portrayal of caring for his mother as she died of breast cancer shortly after he kicked drug addiction provides welcome relief. He describes injecting his mother's medication: I tended to make a grand, nearly cinematic deal of flicking the bubbles away, as though to say, 'Now Mom, aren't you glad I was a junkie?' Other essays are less developed, and Andrew Solomon rehashes territory he covered in The Noonday Demon. Overall, the essays are well worth reading—just not all at once. (Nov. 13) Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.

Intoxicated By My Illness

by Anatole Broyard (1992)
Editorial Review - Kirkus Reviews Copyright (c) VNU Business Media, Inc.
Writer and New York Times book critic Broyard died of cancer in 1990. Here is a slender volume of writings he produced on the subject of his illness itself, filled out with a handful of earlier pieces on ""The Literature of Death,"" and ending with the grippingly autobiographical short story ""What the Cystoscope Said,"" written by Broyard after his own father's death, also of cancer, in 1948. In ...
More 1981, Broyard wrote that ""the vocabulary of death is anticlimactic. It seems that we die in clichÉs."" In his own struggle with illness and the death that it foreshadowed, however, he summoned up an intellectual rigor that attempted to deny either clichÉ or passivity. ""As a patient I'm a mere beginner,"" he wrote: ""Yet I am a critic, and being critically ill, I thought I might accept the pun and turn it on my condition."" And so his effort to think his illness into submission begins. ""My intention,"" he writes in a journal entry, ""is to show people who are ill"" that ""[they] can make a game, a career, even an art form of opposing their illness."" Broyard's own ""art form"" is one, as it always was, that draws on an astonishing breadth of learning and that positively bristles with aphoristic perceptions. ""Soul is the part of you that you summon up in emergencies,"" he writes; and, on doctors and patients: ""The patient is always on the brink of revelation, and he needs an amanuensis."" This is not Dylan Thomas's raging against the night, but instead the consistent and steady application of the thinking mind against the awful austerities and urgencies of death. ""Writing a book,"" says Broyard, ""would be a counterpoint to my illness. It would force the cancer to go through my character before it can get to me."" Courageous, vintage Broyard. The trouble is, though, that death was the winner, and the reader is left not with Broyard's ""intoxication,"" but with regret, loss, and a certain chill and ungainly fear.

The NY Times has had some good articles on prostate cancer recently. These include clinical pieces, a reporter's diary and Patient Voices.

Spelling Love with an X:

A Mother, a Son, and the Gene That Binds Them
By Clare Dunsford

Reviewed by Deborah Alecson
Spelling Love with an X is a first person narrative by a mother, who learns that her child, who had not been developing normally, tested positive for fragile X in 1992 at the age of seven. It is a beautifully written story of her journey with her son, the break up of her marriage, and her personal transformations that resulted from having a child with special needs. She also writes about what she feels being a carrier of fragile X and the one who passed the defective gene on to her son, J.P. Dunsford is a writer with a Ph.D. in English and her command of the language and her ability to relay her story are clearly evident. She intersperses poetry and analogies that correlate the nature of genetics and its particular language of DNA, repeats, replications, etc. to her reality of raising her challenging son whom she loves unconditionally. The book ends with an appendix of resources for fragile X syndrome
This is one of the few books written about fragile X syndrome, one of a family of genetic conditions that are the result of a mutation on the FMR1 gene. Fragile X is still highly under-diagnosed, but the known statistics indicate that Fragile X affects one in 3600 males and one in 5000 females. It is the most common known cause of inherited mental impairment. Fragile X is also the most common known single gene cause of autism (2% and 6% of all children) and approximately one-third of children diagnosed with fragile X syndrome also have some degree of autism. The blood test for fragile X was first available around 1990. Since that time, a more sophisticated blood test has been developed that can detect individuals who are carriers or have the premutation (one in 130 women and a smaller number of men), and those have the full mutation. It was recently discovered that individuals with the permutation often develop neurological and cognitive problems later in life, known as Fragile X- associated tremor/ataxia syndrome. Women with the permutation can also develop fragile X-associated primary ovarian insufficiency.