Mercies in Disguise

Mercies in Disguise: A Story of Hope, a Family's Genetic Destiny, and the Science That Rescued Them
By Gina Kolata (2018)

If your family had a disease that caused significant illness or early death, would you want to find out if you carried the fatal gene?

This remarkable book follows the Baxley family of Hartsdale, South Carolina. It is a medical mystery, beautifully told by Gina. Kolata. The family harbors a mutant gene that causes a progressive neurological disease (GSS). There is science, there is genetics, there is medical ethics, there are questions of faith, and how individuals in their families can react to this life altering realities.

 In Mercies in Disguise, acclaimed New York Times science reporter tells the story of the Baxleys, an almost archetypal family in a small town in South Carolina. A proud and determined clan, many of them doctors, they are struck one by one with an inscrutable illness. They finally discover the cause of the disease after a remarkable sequence of events that many saw as providential. Meanwhile, science, progressing for a half a century along a parallel track, had handed the Baxleys a resolution―not a cure, but a blood test that would reveal who had the gene for the disease and who did not. And science would offer another dilemma―fertility specialists had created a way to spare the children through an expensive process.

A work of narrative nonfiction,     this is the story of a family that took matters into its own hands when the medical world abandoned them. It’s a story of a family that had to deal with unspeakable tragedy and yet did not allow it to tear them apart. And it is the story of a young woman―Amanda Baxley―who faced the future head on, determined to find a way to disrupt her family’s destiny.

Prescribed Reading: Alzheimer's

 

Prescribed Reading

Turning to Books to Grasp the Most Ungraspable Disease

By Sandeep Jauhar
NY Times, June 17, 2021 

Dr. Jauhar wites: "For a condition that is so ubiquitous and so feared, good books on dementia are surprisingly hard to find. Some of the best, I’ve come to learn, deal with particular symptoms, like memory loss, rather than the disease itself." See: Rx Jauhar.

This is a good article, but I disagree.  There are lots of good books about dementia.  See sections on this blog under the categories of dementia and Alzheimers and also the same sections on MedFlix.

Dignifying Dementia (2011)

Elizabeth Tierney’s (E.T.’s) new book, “Dignifying Dementia” is an important addition to the literature of Alzheimer’s Disease and related disorders. It is the chronicle of a patient, Jim Tierney, as told by his wife, E.T. The book recounts Jim’s slow, steady decline from being a vibrant productive teacher and administrator to a totally dependent patient with Lewy Body Disease. Memorably, it addresses the many disconnects between the patient and his family and the health care community. No segment of the latter is untarnished. E.T.’s struggles to identify health care providers for her husband are frustrating and sad.

“The psychologist offered us chairs but never smiled… I couldn’t believe how unfriendly he seemed.” A neuropsychiatrist, when asked by E.T., “What should I do?” responded, “Don’t buy a boat of a 10,000 square foot house.”

Eventually, after much effort, E.T. assembles a caring team that treats Jim with dignity and, indeed, love. Most people would not have had E.T.’s persistence and moxie. Perhaps, that is one reason why so many dementia patients wind up in nursing homes.

Illness narratives fall into three categories: quest, restitution, chaos. Chaos is the least commonly written and the hardest to read. It may also be the most important, the truest type of pathography. Dignifying Dementia is mostly a chaos story, with an admixture of restitution made possible by the team of carers that formed around Jim. It is a memorable book that will help all of us who will be called to care for vulnerable individuals suffering from the varied forms of dementia. Order from Amazon. Kindle is only $3.99

Strange Relation (2011)

by Rachel Hadas

In 2004 Hadas's husband, George Edwards, a composer and professor of music at Columbia University, was diagnosed with early-onset dementia at the age of sixty-one. Strange Relation is her account of "losing" George. Her narrative begins when George's illness can no longer be ignored, and ends in 2008 soon after his move to a dementia facility (when, after thirty years of marriage, she finds herself no longer living with her husband). Within the cloudy confines of those difficult years, years when reading and writing were an essential part of what kept her going, she "tried to keep track… tried to tell the truth."

NPR Interview with R. Hadas

Life in the Balance by Thomas Graboys (2008)

At the age of 49, Dr. Thomas Graboys had reached the pinnacle of his career and was leading a charmed life. A nationally renowned Boston cardiologist popular for his attention to the hearts and souls of his patients, Graboys was part of “The Cardiology Dream Team” summoned to treat Boston Celtics star Reggie Lewis after he collapsed on the court in 1993. He had a beautiful wife, two wonderful daughters, positions on both the faculty of Harvard Medical School and the staff of Boston’s Brigham and Women’s Hospital, and a thriving private practice.

Today, Grayboys is battling a particularly aggressive form of Parkinson’s disease and progressive dementia, and can no longer see patients or give rounds. He is stooped, and shuffles when he walks, the gait of a man much older than his 63 years. And, although he is now remarried to a lovely woman, he lost the mother of his children to cancer in 1998. Despite the physical, mental and emotional toll he battles daily, Graboys continues his life-long mission of caring for the world one human being at a time by telling his story so that others may find comfort, inspiration, or validation in their own struggles.

His is not a sugar-coated story with a silver lining; brutally honest and direct, this is an unflinching memoir of a devastating illness as only a consummate physician could write it. One can’t help but imagine what Dr. Graboys, the healer, would say to Tom Graboys, the Parkinson’s patient—a face-to-face scene imagined in this inspiring book. In his joint roles, Thomas Graboys finds a way to convey hope, optimism and an appreciation of what it means to be truly alive.

Abebooks.com carries this title starting at a relatively inexpensive price.