Pathographies

ALS Researcher Dies of ALS

2012-02-07T06:03:00.005-05:00

Dr. Richard K. Olney, a leading physician and pioneer in clinical research on amyotrophic lateral sclerosis, died of the disease on Jan. 27, 2012 at his home in Corte Madera, Calif. He was 64.

This is an important obit of a researcher/patient with ALS. It's quite ironic and one would hope that some of his writings on the subject are available.

NY Times Obituary.

San Francisco Chronicle article about Dr. Olney (April 2011)

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One Washcloth, One Towel

2012-01-15T13:58:00.007-05:00

by Katey Geyer Winant

Mrs. Winant writes: "The numbing agony after losing your spouse is so overwhelming. It is so devastating. I still feel shredded. It is my wish that reading this [book] will be of benefit to other women and men who have gone through the long, dark pathway of loss. My purposes and hope is that there will be points of identification that will click and be of comfort. Each of us has our own story."

This is a short, eloquent addition to the literature on grief. Jody Kordana brilliantly reviewed "One Washcloth, One Towel" in the January 15th Berkshire Eagle.

A Bittersweet Season (2011)

2011-12-02T10:38:00.008-05:00

by Jane Gross

As painful as the role reversal between parent and child may be for you, assume it is worse for your mother or father, so take care not to demean or humiliate them.
Avoid hospitals and emergency rooms, as well as multiple relocations from home to assisted living facility to nursing home, since all can cause dramatic declines in physical and cognitive well-being among the aged.
Do not accept the canard that no decent child sends a parent to a nursing home. Good nursing home care, which supports the entire family, can be vastly superior to the pretty trappings but thin staffing of assisted living or the solitude of being at home, even with round-the-clock help.

Important Facts
Every state has its own laws, eligibility standards, and licensing requirements for financial, legal, residential, and other matters that affect the elderly, including qualification for Medicare. Assume anything you understand in the state where your parents once lived no longer applies if they move.
Many doctors will not accept new Medicare patients, nor are they legally required to do so, especially significant if a parent is moving a long distance to be near family in old age.
An adult child with power of attorney can use a parent’s money for legitimate expenses and thus hasten the spend-down to Medicaid eligibility. In other words, you are doing your parent no favor—assuming he or she is likely to exhaust personal financial resources—by paying rent, stocking the refrigerator, buying clothes, or taking him or her to the hairdresser or barber.

This is an important book if you have aging parents. It also will be a valuable read for cognizant elderly persons.

Blood Feud (2011)

2011-10-09T09:16:00.005-04:00

by Kathleen Sharp.
Book Review on Center for Medical Consumers web site.
While this is a recurring theme, Blood Feud tells a story we all need to be reminded of. Big PhRMA is about profit not patient good. The point is: caveat emptor. The public is at risk when drug companies fight for market share.

An African proverb holds that "when elephants fight, it's the grass that suffers." This is underscored by the struggles of PhRMA giants Amgen and Ortho-Johnson and Johnson to capture the market share of Epogen and Procrit.

Blood Feud is a sobering story. A similar tale was told in "Pain Killer: A Wonder Drug's Trail of Addiction and Death" (2003) by Barry Meier that deals with Oxycontin.

This book is a thorough expose of many of the dirty tricks played by PhRMA as it pursues is goals of profit over patients' well-being. No one is allowed to stand in PhRMA's way..

Dignifying Dementia (2011)

2011-10-08T18:19:00.003-04:00

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

Grieving the Death of a Pet (2003)

2011-10-02T05:25:00.003-04:00

by Betty J. Carmack
From Publisher's Weekly: ""Rocky's loss taught me how deeply we grieve for our loved animals, the intensity of pain and the length of time it can last," writes Betty Carmack, a nurse and professional pet loss counselor. In Grieving the Death of a Pet, Carmack draws from her experience of counseling more than two thousand people who have lost a beloved pet, as well as the loss of her Rocky and other furry friends. She offers the book as a kind of pet-loss support group to counter "a world that reminds us repeatedly that grief for an animal doesn't count as much as grief for a person." It's poignant and sometimes heartrending, filled with personal stories of love and loss as well as Scripture and thoughts on faith"

Autistic and Seeking a Place in an Adult World

2011-09-18T07:51:00.004-04:00

This is an article from the NY Times about a 22 year-old autistic artist.
"As few as one in 10 [persons with autism] hold even part-time jobs. Some live in state-supported group homes; even those who attend college often end up unemployed and isolated, living with parents.

But Justin is among the first generation of autistic youths who have benefited throughout childhood from more effective therapies and hard-won educational opportunities. The program [described in this article] is based on the somewhat radical premise that with intensive coaching in the workplace and community — and some stretching by others to include them — students like Justin can achieve a level of lifelong independence that has eluded their predecessors."

The full article, Autistic and Seeking a Place in an Adult World, is inspiring and has illustrative multimedia features as well.

Comfort: A Journey Through Grief (2009)

2011-09-10T07:53:00.003-04:00

by Ann Hood

From Booklist: How does one recover from the plenary grief of losing a precious five-year-old child? Novelist Hood’s answer is simple: one doesn’t. After her daughter died suddenly from an antibiotic-resistant strep infection, she just moved along with life, at first muddling through days and weeks of hearing but not comprehending the advice of well-meaning friends and family. Next, the grief began to shift from being her primary focus to second place, then into periodic episodes of overwhelming anguish. Hood’s sometimes-too-painful-to-read memoir bares all the raw emotions, from denial to despair to anger, that she experienced. The grief never really leaves, she says; it just stops eclipsing all else. Especially after she took up knitting, a pastime that occupied her mind in such a way that she couldn’t knit and grieve at the same time. Ultimately, she, her husband, and their son moved on and, it seems, finally found their way to a likeness of the happiness they once had.

You can purchase this book from ABEBOOKS for $0.01 plus shipping. The best buy you will make!

Life, On the Line (2011)

2011-09-05T06:07:00.007-04:00

(from Amazon, but I agree) In 2007, chef Grant Achatz seemingly had it made. He had been named one of the best new chefs in America by Food & Wine in 2002, received the James Beard Foundation Rising Star Chef of the Year Award in 2003, and in 2005 he and Nick Kokonas opened the conceptually radical restaurant Alinea, which was named Best Restaurant in America by Gourmet magazine. Then, positioned firmly in the world's culinary spotlight, Achatz was diagnosed with stage IV squamous cell carcinoma-tongue cancer.

The prognosis was grim, and doctors agreed the only course of action was to remove the cancerous tissue, which included his entire tongue. Desperate to preserve his quality of life, Grant undertook an alternative treatment of aggressive chemotherapy and radiation. But the choice came at a cost. Skin peeled from the inside of Grant's mouth and throat, he rapidly lost weight, and most alarmingly, he lost his sense of taste. Tapping into the discipline, passion, and focus of being a chef, Grant rarely missed a day of work. He trained his chefs to mimic his palate and learned how to cook with his other senses. As Kokonas was able to attest: The food was never better. Five months later, Grant was declared cancer-free, and just a few months following, he received the James Beard Foundation Outstanding Chef in America Award.

Life, on the Line tells the story of a culinary trailblazer's love affair with cooking, but it is also a book about survival, about nurturing creativity, and about profound friendship. Already much- anticipated by followers of progressive cuisine, Grant and Nick's gripping narrative is filled with stories from the world's most renowned kitchens-The French Laundry, Charlie Trotter's, el Bulli- and sure to expand the audience that made Alinea the number-one selling restaurant cookbook in America last year.

This is an amazing story -- a pathography, and much, much more.

An Anatomy of Addiction (2011)

2011-07-20T14:19:00.007-04:00

“Howard Markel eloquently tells the parallel stories of these two pathbreaking physicians (William Halstead and Sigmund Freud) and how their stories intersect in remarkable and sometimes tragic ways . . . Markel's extraordinary achievement combines first-rate history of medicine and outstanding cultural history.” (from Publisher's Weekly,)

AN ANATOMY OF ADDICTION: Sigmund Freud, William Halsted, and the Miracle Drug Cocaine
By Howard Markel Illustrated. 314 pages. Pantheon Books. $28.95.
NY Times Review, July 20, 2011. Also reviewed in the Sunday Times by Sjerwin Nuland.

Suicide Prevention

2011-06-24T17:04:00.005-04:00

Expert on Mental Illness Reveals Her Own Fight. This is an important article on suicide in the June, 23, 2011 NY Times:

"Marsha M. Linehan, creator of a treatment used worldwide for severely suicidal people, has recently "come out" and described her long struggle with mental illness. This reminds one of Elyn Saks' story and the latter's book, The Center Cannot Hold."

The Times article goes on to say: "[A]n increasing number of [seemingly normal individuals] are risking exposure of their secret, saying that the time is right. The nation’s mental health system is a shambles, they say, criminalizing many patients and warehousing some of the most severe in nursing and group homes where they receive care from workers with minimal qualifications."

Read the Times article and perhaps also Elyn Saks excellent book, in addition.

See video of Dr. Linehan from the Times article.

Strange Relation (2011)

2011-03-11T16:52:00.003-05:00

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

Killing the Black Dog (1997)

2011-03-11T12:48:00.001-05:00

by Les Murray

Killing the Black Dog is Les Murray’s courageous account of his struggle with depression, accompanied by poems specially selected by the author. Since the first edition appeared in 1997, hosts of readers have drawn insight from his account of the disease, its social effects and its origins in his family’s history.

Nemesis (2010)

2011-03-08T19:43:00.005-05:00

by Phillip Roth

This is a lyrical, suspenseful evocation of the polio epidemic that raged in the U.S. Northeast during the summers of the 1940s. It captures the fear and paranoia that gripped the populace. Nemesis recalls Camus' The Plague, but to me is a more direct, impactful book. It focuses on the experience of being in and near the epidemic's eye. Perhaps, it's best to just read it without the benefit of reviews (so as to savor its tone and the story's development). However, if you want a review, here's a link to:

NY Times Review

Tiger, Tiger

2011-03-05T15:46:00.004-05:00

by Margaux Fraguso

From Amazon: "With lyricism and mesmerizing clarity, Margaux Fragoso has unflinchingly explored the darkest episodes of her life, helping us see how pedophiles work hidden away in the open to steal childhood. In writing Tiger, Tiger, she has healed herself of a wound that was fourteen years in the making. This extraordinary memoir is an unprecedented glimpse into the heart and mind of a monster; but more than this, it illustrates the power of memory and truth-telling to mend."

NY TImes Book Review March 6, 2011

This is from the Prologue "I started writing this book the summer after the death of Peter Curran, whom I met when I was seven and had a relationship with for fifteen years, right up until he committed suicide at the age of sixty-six.

"Hoping to make sense of what happened, I began drafting my life story. And even during times I haven’t worked on it, when it sat on a shelf in my closet, I felt its presence in the despair that comes precisely at two in the afternoon, which was the time Peter would pick me up and take me for rides; in the despair again at five p.m., when I would read to him, head on his chest; at seven p.m., when he would hold me; in the despair again at nine p.m., when we would go for our night ride, starting at Boulevard East in Weehawken, to River Road, down to the Royal Cliffs Diner, where I would buy a cup of coffee with precisely seven sugars and a lot of cream, and a bread pudding with whipped cream and raisins, or rice pudding if he wanted a change. When I came back, he’d turn the car (Granada or Cimarron or Escort or black Mazda) back to River Road, back to Boulevard East, and we’d head past the expensive Queen Anne, Victorian, and Gothic Revival houses, gazing beyond the Hudson River to the skyscrapers’ lights ignited like a thousand mirrors, where we would sometimes park and watch thunderstorms.

"In one of his suicide notes to me, Peter suggested that I write a memoir about our lives together, which was ironic. Our world had been permitted only by the secrecy surrounding it; had you taken away our lies and codes and looks and symbols and haunts, you would have taken everything; and had you done that when I was twenty or fifteen or twelve, I might have killed myself and then you wouldn’t get to look into this tiny island that existed only through its lies and codes and looks and symbols and haunts. All these secret things together built a supreme master key, and if you ask a locksmith whether there is a master key in existence that will open any lock in the world, he will tell you no, but you can make a key that will open all the locks in one particular building.

Humbert Humbert penned "Lolita," a novel. Margaux Franuso (a sad, real Lolita) composes a memoir. Life imitates art.

The Long Goodbye

2011-03-02T19:56:00.003-05:00

A Memoir
by Meghan O'Rourke

Essay about book by Ms. O'Rourke.

From Amazon: "What does it mean to mourn today, in a culture that has largely set aside rituals that acknowledge grief? After her mother died of cancer at the age of fifty-five, Meghan O'Rourke found that nothing had prepared her for the intensity of her sorrow. In the first anguished days, she began to create a record of her interior life as a mourner, trying to capture the paradox of grief-its monumental agony and microscopic intimacies-an endeavor that ultimately bloomed into a profound look at how caring for her mother during her illness changed and strengthened their bond.

O'Rourke's story is one of a life gone off the rails, of how watching her mother's illness-and separating from her husband-left her fundamentally altered. But it is also one of resilience, as she observes her family persevere even in the face of immeasurable loss.

With lyricism and unswerving candor, The Long Goodbye conveys the fleeting moments of joy that make up a life, and the way memory can lead us out of the jagged darkness of loss. Effortlessly blending research and reflection, the personal and the universal, it is not only an exceptional memoir, but a necessary one."

A Widow's Story

2011-03-02T19:43:00.005-05:00

A Memoir

by Joyce Carol Oates

From Amazon: "Early one morning in February 2008, Oates drove her husband, Raymond Smith, to the Princeton Medical Center where he was admitted with pneumonia. There, he developed a virulent opportunistic infection and died just one week later. Suddenly and unexpectedly alone, Oates staggered through her days and nights trying desperately just to survive Smith's death and the terrifying loneliness that his death brought. In her typically probing fashion, Oates navigates her way through the choppy waters of widowhood, at first refusing to accept her new identity as a widow. She wonders if there is a perspective from which the widow's grief is sheer vanity, this pretense that one's loss is so very special that there has never been a loss quite like it. In the end, Oates finds meaning, much like many of Tolstoy's characters, in the small acts that make up and sustain ordinary life. When she finds an earring she thought she'd lost in a garbage can that raccoons have overturned, she reflects, "If I have lost the meaning of my life, and the love of my life, I might still find small treasured things amid the spilled and pilfered trash." At times overly self-conscious, Oates nevertheless shines a bright light in every corner in her soul-searing memoir of widowhood. (Feb.) "

NY Times Review.

Twiblings: Annals of Surrogacy

2011-01-03T09:21:00.002-05:00

Meet the Twiblings is an article about how four women (and one man) conspired to make two babies born five days apart. Melanie Thernstrom weaves a moving story about the frontiers of reproduction she explored and utilized to have her children.

It will be simpler for her to tell the "twiblings:"
"Once, there was a couple who wanted to have babies. They tried and tried, but no babies arrived, and they were very sad. But then a Fairy Goddonor brought them some magical eggs. She came from a place where it never rains, and she drove a midnight blue convertible and had long golden hair (well, currently short and aubergine). They took the eggs, and the eggs changed into the beginnings of babies, and they gave them to angel women to help them grow. So the angel women stowed the beginning of each baby in their bodies, where they grew and grew like pumpkins."

The Emperor of All Maladies (2010)

2010-11-14T19:05:00.006-05:00

A Biography of Cancer
by Siddhartha Mukherjee

New Yorker Review of EOAM by Steven Shapin, November 6, 2010.

This is an incredible book that won the Pullitzer Prize in 2011. The following is from Publisher's Weekly: " Mukherjee's debut book is a sweeping epic of obsession, brilliant researchers, dramatic new treatments, euphoric success and tragic failure, and the relentless battle by scientists and patients alike against an equally relentless, wily, and elusive enemy. From the first chemotherapy developed from textile dyes to the possibilities emerging from our understanding of cancer cells, Mukherjee shapes a massive amount of history into a coherent story with a roller-coaster trajectory: the discovery of a new treatment--surgery, radiation, chemotherapy--followed by the notion that if a little is good, more must be better, ending in disfiguring radical mastectomy and multidrug chemo so toxic the treatment ended up being almost worse than the disease. The first part of the book is driven by the obsession of Sidney Farber and philanthropist Mary Lasker to find a unitary cure for all cancers. (Farber developed the first successful chemotherapy for childhood leukemia.) The last and most exciting part is driven by the race of brilliant, maverick scientists to understand how cells become cancerous. Each new discovery was small, but as Mukherjee, a Columbia professor of medicine, writes, "Incremental advances can add up to transformative changes." Mukherjee's formidable intelligence and compassion produce a stunning account of the effort to disrobe the "emperor of maladies."

The Killer Within (2011)

2010-11-14T18:28:00.000-05:00

(Published January 2011)
Philip Carlo's investigative achievements are remarkable, but what wasn't known to his readers is that, while working on The Ice Man, he learned he had amyotrophic lateral sclerosis (ALS), a terminal illness that causes all of the muscles in the body to atrophy over time. Suddenly, after years of penetrating the minds of killers, Carlo found himself being pursued by the grim reaper. But rather than lying down and succumbing to the disease, Carlo continued to work, and his books are still being published, to both critical and commercial acclaim.

In The Killer Within, Carlo documents his difficult experiences with ALS and explains how he has managed to continue to write prodigiously in the face of adversity. The Killer Within is a gripping, suspenseful page turner that pulls the reader into the netherworld of Mafia bosses, Mafia hit men and serial killers, as well as the hard realities of dealing with a fatal disease.

Mr. Carlo died in November 2010: NY Times Obit.

Living with a brain tumor

2010-11-14T09:20:00.007-05:00

When language falls by the wayside, of what does the mind consist?

“This is about my dying: and how my life got here.” So begins Tom Lubbock’s poignant piece about what it has been like living with a brain tumor for the past two years.

In 2008 Lubbock, a British art critic and journalist, was diagnosed with glioblastoma multiforme, a malignant brain tumor. What made his condition all the more grave was that the growth developed in his left temporal lobe—the seat of language. Lubbock, who makes his living by the art of composing words on a page, was forced to face the fact that eventually he would lose his ability to write and speak.

Lubbock muses: “I won't recover, no. But I haven't been given a definite time limit. So the narrative seems unclear and my luck, in a way, is both bad and good....I recognise that I am being kept alive by my treatment. I can hope for a prolongation for a little. I believe in my life continuing, though not for very long. I don't feel physically in pain – the brain has no nerve feelings, of course – nor have I been very interested, in fact, in the science.

“At the same time, this life is unbelievable. At moments, it is terrible and outrageous. But in other ways, I accept what it brings, in its strangeness and newness. This mortality makes its own world.”

Tom Lubbock’s amazing essay can be accessed in its entirety here.

A Life Beyond Reason

2010-11-14T07:42:00.006-05:00

Chris Gabbard, an associate professor of English at the University of North Florida, has published an essay on the evolution of his perspectives regarding his severely handicapped son, August. Professor Gabbard has much to teach us about the depth of parental commitment and how caring for a special needs child can enhance the outlook of the caretaker as well.

Gabbard writes: “To admit how August has changed me is not to assert that what he has given me compensates for what he, my wife, my daughter, and I have lost on account of the poor decisions made by the hospital where he was born. There is no getting back what we have lost. Compensation is just a trope, and belief in compensation is as superstitious as belief in the medieval notion of correspondences. Besides, nothing can compensate for what all of us have had to give up.

“That is not to deny that August, along with my daughter and my wife, is the most amazing and wonderful thing that has ever happened to me, for he has allowed me an additional opportunity to profoundly love another human being.”

Professor Gabbard’s essay can be accessed in its entirety here. It will also appear in Papa, PhD: Essays on Fatherhood by Men in the Academy, published this month by Rutgers University Press.

The Runaway Bunny

2010-11-08T20:53:00.007-05:00

What do you say to a 4-year-old who has been diagnosed with a critical, perhaps terminal illness? What sort of reassurance do you offer? How far out on the limb do you go?

At that age, reassurance takes on the mantel of love. Words help, touch helps, doing an activity together helps. We work with whatever tools we have.

For young children, reading a book together may help reassure them that they do not have to go through their ordeal alone. A book is a story—nothing more, nothing less. Its category means nothing—it is only the story that holds meaning.

First published in 1942 and never out of print, “The Runaway Bunny” by Margaret Wise Brown is a tender tale which serves to reassure young children that, come what may, they will never be deserted by those steadfast significant grownups in their lives.

Making Miracles Happen (1997)

2010-10-24T08:11:00.003-04:00

by Gregory White Smith and Steven Naifeh

From Booklist: "When you live with a brain tumor for 20 years, you learn a lot about medicine and about yourself. Smith ( and Naifeh, his twenty-two-year partner and coauthor; their Jackson Pollock [1990] won a Pulitzer Prize) learned how to keep searching until he found the right doctor and the right treatment. He also discovered the importance of the right attitude and of companionable support: be persistent, he says, and when seeing the doctor, have a companion to help in asking questions and remembering instructions. To find the best doctor for your problem, he says, ask other doctors, not their patients; search always for opinions and developing options, not a single right answer; and keep mutual respect between doctor and patient as a goal. Above all, Smith counsels, don't let a disease or an impairing condition turn you into someone different from what you have been."

This is an important book that will be a guide to anyone facing a serious illness. Gregory White Smith is the prototypical "Akamai Patient."

The Council of Dads (2010)

2010-10-24T08:00:00.001-04:00

My Daughters, My Illness and the Men Who Could Be Me
by Bruce Feiler

From Amazon: In 2008, bestselling author Feiler learned he had osteogenic sarcoma, a rare, life-threatening tumor in his left leg . Fearing what his absence would do to the lives of his young daughters, Feiler asked six close friends ("Men who know my voice") to help raise them. Feiler chronicles his battle with cancer, from diagnosis to recovery, as well as his sentimental but moving journey to recruit friends who can carry out his wish to teach his daughters to travel, dream, and live life to its fullest. Feiler's intimate bond with his friends makes them unusually expressive and communicative, and their own biographies lend further inspirational dimensions to the story. It's hard not to get swept along and cheer Feiler on as he fights for his life and his daughters'.

I am indebted to Linda Welsh for sending me a copy of this inspiring and important book.

I Am The Central Park Jogger

2010-07-22T17:06:00.000-04:00

A Story of Hope and Possibility
by Trisha Meili

From Amazon: "In April of 1989, a young woman was brutally assaulted and raped while jogging in New York’s Central Park. The attack captured headlines around the world as the anonymous "Central Park Jogger" fought to recover from massive injuries that left her near death. Fourteen years later, in this first person account, Trisha Meili broke her silence to discuss the incident in her own words and reveal who she was before the attack and who she became as a result of it. Meili tells the story of a competitive and driven young executive at a finance firm whose life was destroyed, and how she ultimately rebuilt it. Passages where Meili is reunited years later with the doctors and nurses who saved her life are especially compelling, as are her accounts of testifying in court and her first run after the incident. While her candor is remarkable and certainly moving, it’s worth noting what this book does not include. Meili can provide no detail of the actual attacks (she has no memory of them), she has little to say about the racial controversy her case ignited, and she only briefly mentions the fact that, during the writing of this book, the convictions of her attackers were vacated after another man confessed to the crime. But these are not necessarily omissions; they are simply not central to Trisha Meili’s highly readable story of tragedy and, ultimately, triumph. I Am The Central Park Jogger is not just a book for New Yorkers curious to finally hear from "The Jogger"; it’s an inspirational tale of overcoming enormous obstacles and getting back on the road again. --John Moe"

Wide Awake: A Memoir of Insomnia (2010)

2010-07-12T05:45:00.006-04:00

by Patricia Morrisroe

This appears to be an important book about insomnia.
Robert Pinsky, a past U.S. Poet Laureate, in a brilliant review in the NY Times, wrote: "A corollary to the mysteries of sleep are the mysteries of insomnia. Some people have trouble getting to sleep. Others, like Patricia Morrisroe, as she tells us in “Wide Awake,” have trouble staying asleep. Some people, when deprived of sleep, have hallucinations, or they collapse. Others do relatively well. Nor is insomnia the only problem. According to Morrisroe, “The International Classification of Sleep Disorders” recognizes more than 80 categories, including hypersomnia, narcolepsy, various breathing-related sleep disorders, REM behavior disorder, night terrors, painful erections and _circadian-rhythm sleep disorder.

Morrisroe shapes this material as a personal narrative of her quest for better sleep, an odyssey of encounters with various drug researchers and dispensers, psychotherapists and mystics and conference-goers, as well as a range of savants, bullies, discoverers, profiteers, innovators and at least one sage. The first-person character she brings to this quest isn't ironically brooding or darkly extravagant, nor severely pedagogical."

So Much for That (2010)

2010-07-07T16:41:00.000-04:00

by Lionel Shriver

This is a fine book that deals mostly with health insurance inequalities and the grossly unfair, tragic and ridiculous state of affairs in the U.S. It follows two families: one with a wife and mother with mesothelioma and the other with a child with a rare genetic disease, familial dysautonomia.

Lisa O'Kelly's reviewing the book in the Observer writes: "Dedicating an entire novel to the themes of serious illness and the unfairness of the pre-Obama healthcare system in America is risky. It is unpalatable subject matter and at times, I must confess, I dreaded picking up the book to find out what happened next. But Shriver's furious energy drags you along regardless."

I do not see many major changes here even with the Obama plan. So Much for That is a great introduction to the state of health care in the U.S. It is wise and well-researched, educational and a pleasure to read. An important addition to the health care literature.

Fortunate Son (1992)

2010-07-05T06:00:00.005-04:00

by Lewis Puller (Wiki Bio)
From Amazon: Son of the famous World War II Marine commander "Chesty" Puller, Lewis Puller proudly followed in his father's footsteps. It was his misfortune, though, to serve in Vietnam in a war that brought not honor but contempt, and exacted a brutal personal price: Puller lost both legs, one hand, and most of his buttocks and stomach. Years later he was functional enough to run for Congress, bitterly denouncing the war. He lost, became an alcoholic, and almost died again. Then he climbed out of that circle of Hell to write this searingly graphic autobiography, which won a Pulitzer Prize in 1992. One last poignant postscript: three years after the enormous success of this book, the author killed himself.

I remember reading this book when it came out. It is a memorable book that might be even more important today with so many similarly affected soldiers (and civilians). An article published on July 4, 2010 in the NY Times "Spirit Intact, Soldier Reclaims His Life" tells a similar story, but focuses mostly on the positive.

Wide Awake (2010)

2010-06-28T21:20:00.000-04:00

A Memoir of Insomnia
by Patricia Morrisroe
From the NY Times review (June 28, 2010) "Cheerfully anecdotal, “Wide Awake,” is full of sleep-related absurdities. It describes Ms. Morrisroe's various forays into the world of insomnia remedies as she tried a plethora of would-be cures. Behavior modification, sleep-inducing drugs, artificial light, meditation, absinthe and orthodontia: these are all avenues she considered. Even the subject of uvulopalatopharyngoplasty as a cure for sleep apnea comes up, though perhaps only so that “Wide Awake” can include that word.

Three Wishes: A True Story of Good Friends, Crushing Heartbreak, and Astonishing Luck on Our Way to Love and Motherhood (2010)

2010-05-22T11:16:00.000-04:00

by Cary Goldberg, Beth Jones and Pamela Ferdinand

"Three Wishes is a memoir-times-three about what happens when co-author Carey Goldberg decides to go to a sperm bank. The eight vials she purchases turn out to have an unexpected effect: As each woman considers using the vials, she falls in love and becomes pregnant without an assist from science. Goldberg, Beth Jones and Pamela Ferdinand take turns sharing their stories, which are not without heartbreak, but happiness and hope ultimately prevail in this surprising tribute to friendship and motherhood, despite the odds." (Bookpage Linda M. Castellitto )

Product Description

From BookPage: Carey, Beth, and Pam had succeeded at work but failed at romance, and each resolved to have a baby before time ran out. Just one problem: no men. Carey took the first bold step towards single motherhood, searching anonymous donor banks until she found the perfect match.

From Amazon: What she found was not a father in a vial, but a sort of magic potion. She met a man, fell in love, and got pregnant the old-fashioned way. She passed the vials to Beth, and it happened again. Beth met man, Beth got pregnant. Beth passed the vials to Pam, and the magic struck again. There were setbacks and disappointments, but three women became three families, reveling in the shared joy of love, friendship, and never losing hope.

See NY Times article about the authors and their Semen Odyssey.

The Gift of Sperm Donor 8282

2010-05-22T11:00:00.000-04:00

This is an article about artificial insemination and the odyssey of a particular sperm donation. The story from the May 23 New York Times is the subject of a book: "“Three Wishes: A True Story of Good Friends, Crushing Heartbreak, and Astonishing Luck on Our Way to Love and Motherhood” (Little, Brown)."
Read the Times Article and see listing for the book, "Three Wishes".

So Close: (2009)

2010-05-22T10:52:00.000-04:00

Infertile and Addicted to Hope
by Tertia Loebenberg Albertyn
From Amazon: Meet, marry and make a baby: That's how it's supposed to go, right? What happens when you start trying for a family ... and trying, and trying some more? How far do you go to achieve your dream of having children? So Close is the heart wrenching, exhilarating, devastatingly funny story of Tertia Albertyn's battle with infertility. Tertia wanted a baby so badly she went through nine IVFs. Most people give up after the third. I don't think I am being brave at all. I am just too terrified NOT to try again. In her worst nightmare she could never have imagined that making a baby would take her four years, each treatment bringing her and her husband Marko closer and closer to creating their family. During Tertia's journey everything that can go wrong does go wrong. Until, finally, everything goes just right. Tertia is as hilarious as she is irrepressible, as approachable as she is knowledgeable. If you are struggling with infertility, have triumphed over infertility or have felt empathy with someone who is going through this experience, you will find a friend in Tertia.
DJE: I haven't read this yet; however, it comes highly recommended.

My Own Medicine (2002)

2010-03-07T19:22:00.002-05:00

A Doctor's Life as a Patient
by Geoffrey Kurland
Overview from Google Books: From mortal illness to miraculous recovery, a doctor's moving account of his own experience as a patient At forty-two, Geoffrey Kurland, a pediatric pulmonologist specializing in such deadly diseases as cystic fibrosis, was diagnosed with hairy cell leukemia, a rare cancer with a statistically low survival rate. A remarkably fit man in training for 100-mile "extreme" races whose job is equally high performance, he is forced to confront the challenge of his own mortality. He tries to cope by turning inward in a desperate search for ever-elusive answers. As the doctor becomes a patient and lives through the terror and pain that he had until then only observed at a remove in his young patients, he learns invaluable life lessons that will ultimately make him a better doctor. This is Kurland's memoir of his diagnosis, treatment, and return to health and "normal" life-an unforgettable testament to the resilence of the human spirit.

There is also an amazing talk about the book which Geoffrey Kurland gave at Chautauqua in 2004. My Own Medicine: Lessons Learned en Route to Recovery. I found it at my local library.

Surviving the Fall

2010-02-18T20:26:00.000-05:00

The Personal Journey of an AIDS Doctor
by Peter Selwyn
From Publisher's Weekly: "Selwyn entered his residency at an inner-city Bronx hospital in 1981, just in time for the arrival of AIDS. Medical school had prepared him to be a healer, but in the face of a devastating, incurable disease, he found his most important role was as a "witness and companion." There were certain characteristics of the disease that made it more personal, and in the devastating effects of AIDS on families, Selwyn began to sense parallels with the suicide of his father: "Like AIDS, suicide is something that stigmatizes both those who die and those who survive, something that is shrouded with shame, guilt, and secrecy." Selwyn successfully intertwines his own story with portraits of his most memorable patients, resisting the temptation to turn them into martyrs. He admires drug addicts' "yearning to live intensely in every moment" and eventually, as he becomes more and more obsessed with his work, recognizes that he shares some of their patterns of addictive behavior. As befits a memoir, this book's best moments are the intensely personal ones: Selwyn's secret fear that any weight loss meant the onset of AIDS; his attempt to trace his father's last steps in the building where he died. Selwyn credits his journey through the AIDS epidemic with making him a better doctor, but the healing went both ways as he found a new understanding that would allow him to treat the untended wounds left by his father's death."

DJE: This is a memorable and important work for anyone interested in the effects suicide on family members.

From the Heart (2007)

2010-02-15T15:18:00.004-05:00

by Kathy Kastan, LCSW, M.A.Ed.

"The first book written for women dealing with the emotional repercussions of heart disease, From the Heart will is a guide to women with heart disease move forward with optimism and courage. It addresses such questions as: How do you regain a strong self-image? Grapple with your fears? Talk to the people you love about your illness? Learn to trust your body?

This book combines Kastan's personal experience and expertise as a therapist with stories from scores of other women with heart disease. It is an invaluable resource which will help women reduce stress, give up hard-to-break habits, adapt to new lifestyles ? and thrive again."

The book can be bought at Amazon or obtained more cheaply at Abebooks.com.

This is a fine, useful book. It is recommended to any woman with a history of heart disease, at risk, or with friends and/or relatives with risk factors.

On Our Own (1976)

2010-02-14T07:16:00.004-05:00

Patient-Controlled Alternatives to the Mental Health System
by Judi Chamberlin

Ms. Chamberlin, who died in January 2010 at age 65, was a civil rights hero from a civil rights movement you may have never heard of. She took her inspiration from the heroes of other civil rights movements to start something she liked to call Mad Pride — a movement for the rights and dignity of people with mental illness. "On Our Own" is the Manifesto for people with mental health disorders.

Here is an NPR piece about Judi Chamberlin which aired on Jan 19. 2010.

This is an important book. The "Mental Health System" still functions in ways that Chamberlin describes. Every day in my office I see patients who get little help except ineffective pharmacotherapy. They see psychiatrists for a few minutes a month for adjustments of their meds. Of course, it's the poor and the disenfranchised who are the cash cows for these treatment centers.

Look Up For Yes (1997)

2010-02-14T06:55:00.005-05:00

by Julia Tavalaro and Richard Tyson

from Google Books:
One woman's passionate and articulate testament to the world that she is, indisputably, alive!

More than thirty years ago, Julia Tavalaro woke up from a coma to find herself almost completely paralyzed by two strokes that had also left her unable to speak. Suddenly, just thirty-two years old, she was a prisoner in her own body and a victim of the ignorant and cruel treatment of hospital workers who neither noticed nor cared that the "vegetable" they changed and fed every day was actually a bright and emotional woman. In this powerful memoir, painstakingly written with the help of poet Richard Tayson, Tavalaro details the hellish life she endured as a defenseless patient, angry and desperate to die, and the liberating actions of two therapists who took the time to realize that she was not incognitive but rather brimming with intelligence and life.

At last, Tavalaro managed to break through the isolation that imprisoned her. Slowly, methodically, she regained her ability to communicate -- aided by technological and therapeutic developments -- and began to compose poems that drew on the memories of her life before her stroke. Beautifully written and achingly heartrending, Look Up for Yes is a testament to a passionate and articulate woman who is ready and able to let the world know she is, indisputably, alive.

DJE: Similar to "The Butterfly and the Diving Bell" but darker and more powerful. This is the story of an ordinary woman who by luck was SAVED (after a fashion). Worth reading for neurologists, people who work in rehab, and anyone interested in the triumph of the individual over amazing odds.

The Cure

2010-01-24T11:57:00.007-05:00

by Geeta Ananda

From Amazon: "At 15 months old, Megan Crowley was diagnosed with Pompe disease, a rare genetic disorder that was likely to reduce her life span to five years at most. Her five-month-old brother, Patrick, shared the same disease and its crippling progression. Their father, John Crowley, a freshly minted Harvard MBA graduate, was determined to use his brains and connections to find a cure. He started a family foundation to fund research on Pompe disease and eventually headed a biomedical start-up company with a promising approach. Ironically, the more involved he got in efforts to find a cure, the slimmer the prospects were for his own children as hard business decisions and conflict-of-interest questions thwarted his efforts. Blocked from getting his children into clinical trials that could prolong their lives, and watching them grow weaker and weaker, Crowley concedes that he was occasionally tempted to simply steal the precious drugs. But he pressed ahead. Anand, Pulitzer Prize-winning reporter with the Wall Street Journal, delivers a detailed and heart-wrenching account of a father's extraordinary efforts to save his children and find a cure for a debilitating and life-threatening disease."Vanessa Bush
The movie "Extraordinary Measures" is based on this book.

Nothing Was The Same 2009

2009-11-04T15:29:00.004-05:00

by Kay Jamison
From The Washington Post: "It has been said that grief is a kind of madness. I disagree. There is a sanity to grief, in its just proportion of emotion to cause, that madness does not have." So writes Kay Redfield Jamison, the clinical psychologist whose widely acclaimed 1995 memoir, "An Unquiet Mind," revealed her lifelong struggle with manic-depressive illness. "Nothing Was the Same" is the story of her marriage to the late Richard Wyatt, a man who overcame severe childhood dyslexia to become a leader in schizophrenia research. With the blend of straightforward frankness and poetic eloquence for which her earlier book drew praise, Jamison describes the almost 20 years of their life together as a love affair that encompassed not only their shared work, colleagues, family and friends, but also her mental illness and the cancer that ultimately claimed his life in 2002. One thing that makes this book especially compelling is its quiet matter-of-factness in the face of personal catastrophe. This is not lack of feeling. On the contrary, Jamison periodically offers a brief, chilling glimpse of her sufferings with bipolar disorder, once writing to her husband: "There are moments when you provide a minute of sweetness and belief, and then the blackness comes again. I shall be done for one of these times. No matter what I do, this illness will always bring me to my knees."

This is a moving book. The chapter "Mourning and Melancholia" is especially important in that it differentiates between depression and grief.

It's a fine companion piece to An Unquiet Mind.

Love & Death (2009)

2009-10-01T20:37:00.004-04:00

by Forrest Church
From Amazon. "As pastor of New York’s All Souls Unitarian Church, Church is perhaps most comfortable speaking in sermons, which may also be especially comforting, now that he has received a veritable death sentence via terminal cancer, to his congregants and the readers of his many books. The famously liberal minister-son of Idaho’s storied mid-twentieth-century liberal senator Frank Church here uses several sermons delivered during the span of his career to explore the bond humans have with death in relation to love, a topic he has addressed often when congregants or their loved ones have died. He concludes that to live is to love, that without love there can be no life. Thus the terms life and love become interchangeable, and life-love is a risk we all must take. Church speaks directly to the heart with a message of certain solace to virtually anyone facing the loss of a loved one." --Donna Chavez

No Time To Say Goodbye (1999)

2009-10-01T06:15:00.003-04:00

"A great many books have been written on the reasons for suicide from the victim's point of view, but this powerful work deals with the wrenching emotional effects of unexpected purposeful death on grieving survivors. The author's husband, seemingly a thriving physician, took his life in December 1989. Fine's discovery of his body left her with a flood of mixed emotions and anguish that inspired her to record, in vividly honest terms, the legacy of suicide on survivors. Despite the permanent sadness and even humiliation that suicide survivors face, this book offers hope in its summary of predictable patterns of adjustment. Sections move from the suicide, to its aftermath, to survival and how to make sense of the chaos. An excellent appendix includes current information on organizations, resource materials, and support groups for suicide survivors. The bibliography is extensive and useful. Recommended for public libraries and specialized mental health collections." Catherine T. Charvat, John Marshall Lib., Alexandria, Va.

This book is of value to anyone who has lost a love one suddenly and unexpectedly.

Gilgamesh

2009-09-28T06:17:00.005-04:00

Translated by Stephen Mitchell (2006)
From Amazon: The acclaimed translator of the Tao Te Ching and the Bhagavad Gita now takes on the oldest book in the world. Inscribed on stone tablets a thousand years before the Iliad and the Bible and found in fragments, Gilgamesh describes the journey of the king of the city of Uruk in what is now Iraq. At the start, Gilgamesh is a young giant with gigantic wealth, power and beauty—and a boundless arrogance that leads him to oppress his people. As an answer to their pleas, the gods create Enkidu to be a double for Gilgamesh, a second self. Learning of this huge, wild man who runs with the animals, Gilgamesh dispatches a priestess to find him and tame him by seducing him. Making love with the priestess awakens Enkidu's consciousness of his true identity as a human being rather than as an animal. Enkidu is taken to the city and to Gilgamesh, who falls in love with him as a soul mate. Soon, however, Gilgamesh takes his beloved friend with him to the Cedar Forest to kill the guardian, the monster Humbaba, in defiance of the gods. Enkidu dies as a result. The overwhelming grief and fear of death that Gilgamesh suffers propels him on a quest for immortality that is as fast-paced and thrilling as a contemporary action film. In the end, Gilgamesh returns to his city. He does not become immortal in the way he thinks he wants to be, but he is able to embrace what is. Relying on existing translations (and in places where there are gaps, on his own imagination), Mitchell seeks language that is as swift and strong as the story itself. He conveys the evenhanded generosity of the original poet, who is as sympathetic toward women and monsters—and the whole range of human emotions and desires—as he is toward his heroes. This wonderful new version of the story of Gilgamesh shows how the story came to achieve literary immortality—not because it is a rare ancient artifact, but because reading it can make people in the here and now feel more completely alive.

A Healing Touch (2008)

2009-09-28T06:04:00.005-04:00

True Stories of Life, Death and Hospice
From Booklist: Pulitzer Prize–winning novelist Russo (Empire Falls, 2001) edits and, with five others, contributes to this tiny collection of stories of people who have benefited from grief intervention via hospice. While the focus is parochial—all contributors are Mainers who worked with the Waterville, Maine, hospice—the message is universal: hospice counseling is not, as many believe, limited to preparation for death but may help those who have already lost a loved one. In fact, the majority of these accounts are about families who have experienced a child’s sudden, unexpected death: the mother of marine Major Jay T. Aubin, the first American casualty in Operation Iraqi Freedom; the parents of a teenage suicide victim; those of a son killed in a car crash; and a father who lost his infant son. Members of several of these families now voluntarily give their time and expertise to the Waterville hospice. At once heartbreaking and hopeful, the stories become all the more poignant as each author personalizes them with references to his or her own experience of loss. --Donna Chavez

I found this profoundly moving and worth reading. It is short and contains six moving stories. Well worth getting and reading. DJE

The Horse Boy (2009)

2009-09-12T16:35:00.005-04:00

A Father's Quest to Heal His Son
by Rupert Isaacson (The Film will be released late 2009)
Review by Temple Grandin: "This is a fascinating book. It is the tale of a family's journey to Mongolia with their five-year-old son who has autism. The family travels to the northern remote areas and lives with the nomads and herders away from the cities. I loved the descriptions of the nomad way of life, and that they were so accepting of a child with autism. Rowan loved baby animals and the people did not mind when he grabbed a baby goat and climbed into one of their beds with it. During the trip, Rowan developed improved language and behavior. He also had a magical connection with horses. There are many wonderful passages about Rowan’s exploits with a Mongolian horse named Blackie.

Rupert Isaacson was surprised at how accommodating the Mongolian people were. They tolerated Rowan's pushing, yelping, and joyful rushing about. At the end of the book the family get a rude awakening when a German tourist who was a psychologist disapproved of bringing a child with autism to a national park to view wild horses. I was interviewed by Rupert Isaacson before he wrote his book and we discussed perhaps the shamans and the healers in some traditional cultures had autistic traits. Their rituals with rhythmic chanting and repetitive movements have similarities to autistic "stims." When I was little, I went into a calm trance-like state when I rocked and dribbled sand through my hands.

Children with autism need to be exposed to lots of interesting things and new experiences in order to develop. One of the reasons the trip to Mongolia was so beneficial was that Rowan could explore lots of fascinating things such as horses, streams, plants, and animals in an environment that was QUIET. The Mongolian pastureland was a quiet environment free of the things that overload the sensory system of a child with autism. There were no florescent lights or constant noise and echoes. Some individuals with autism see the flicker of florescent lights which is like being in a disco with strobe lights. When I was a child, loud sounds hurt my ears.

Parents and teachers can duplicate the benefits of this trip without having to travel. Horseback riding is a great activity. Many parents have told me that their child spoke his/her first words on a horse. Activities that combine both rhythm and balancing such as horseback riding, sitting on a ball, or swinging help stabilize a disordered sensory system. There are lots of places you can take a child to explore nature such as parks, brooks or a field with tall grass. Children with autism need to be shown interesting things and encouraged to do new things. Everywhere Rowan went he was asked questions and encouraged to talk about the things he was looking at. You need to find QUIET, interesting places away from crowds of people, florescent lights, traffic, and noise, where you can engage the child and keep him tuned in. This is a great book and everyone who is interested in autism, animals or different cultures should read it. --Temple Grandin

This may be an important book for parents of an autistic child.

Stitches (2009)

2009-09-07T13:39:00.005-04:00

by David Small
From Amazon: Reading Stitches may feel unexpectedly familiar. Not in the details of its story--which is Small's harrowing account of growing up under the watchless eyes of parents who gave him cancer (his radiologist father subjected him to unscrupulous x-rays for minor ailments) and let it develop untreated for years--but in delicate glimpses of the author's child's-eye view, sketched most often with no words at all. Early memories (and difficult ones, too) often seem less like words than pictures we play back to ourselves. That is what's recognizable and, somehow, ultimately delightful in the midst of this deeply sad story: it reminds us of our memories, not just what they are, but what they look like. In every drawing, David Small shows us moments both real and imagined—some that are guileless and funny and wonderfully sweet, many others that are dark and fearful—that unveil a very talented artist, stitches and all. --Anne Bartholomew

Lucy Grealy's The Autobiography Face covers similar territory.

Just read "Stitiches." Powerfully moving and sensitively drawn. Not self-pitying but the picture of a troubled family and a child with cancer. Raises many questions and makes many points in images and few words.

Parallel Play (2009)

2009-09-04T05:28:00.003-04:00

Growing Up with Undiagnosed Asperger's
by Tim Page

When he was 45, Mr. Page learned that he had the autistic disorder called Asperger's syndrome. He was relieved to know that his condition was quantifiable and that others share the same general symptoms. But he was also much too smart and self-aware to feel true kinship with other Aspies, as he calls them.

Excerpt.

Beautiful Boy: A Father's Journey Through His Son's Addiction (2008)

2009-09-01T06:27:00.003-04:00

by David Sheff
From Amazon,com Review: "From as early as grade school, the world seemed to be on Nic Sheff's string. Bright and athletic, he excelled in any setting and appeared destined for greatness. Yet as childhood exuberance faded into teenage angst, the precocious boy found himself going down a much different path. Seduced by the illicit world of drugs and alcohol, he quickly found himself caught in the clutches of addiction. Beautiful Boy is Nic's story, but from the perspective of his father, David. Achingly honest, it chronicles the betrayal, pain, and terrifying question marks that haunt the loved ones of an addict. Many respond to addiction with a painful oath of silence, but David Sheff opens up personal wounds to reinforce that it is a disease, and must be treated as such. Most importantly, his journey provides those in similar situations with a commodity that they can never lose: hope"

The Lost Child: A Mother's Story (2009)

2009-09-01T06:19:00.004-04:00

by Julie Myerson

From NY Times Review: "Any parent who has had to confront a child’s drug abuse is familiar with the drawn-out agony of despair, impotence, fear, grief and, while there is still a chance for recovery, hope. That last is perhaps the most ravaging of all. Hope means you aren’t yet numb enough, not yet at peace with the chaos into which life has spilled, not yet so defeated and angry that you’re unable to try to help. Julie Myerson, a novelist living in London and the mother of three children, was finally forced to throw her eldest son out of the house — and change the locks — when his cannabis habit so deranged him that he became physically violent. He was 17 years old." Full Review.

A Personal Matter

2009-08-26T06:20:00.005-04:00

by Kenzaburo Oe, Winner of the 1994 Nobel Prize for Literature

From Amazon: "Oe’s most important novel, A Personal Matter, has been called by The New York Times “close to a perfect novel.” In A Personal Matter, Oe has chosen a difficult, complex though universal subject: how does one face and react to the birth of an abnormal child? Bird, the protagonist, is a young man of 27 with antisocial tendencies who more than once in his life, when confronted with a critical problem, has “cast himself adrift on a sea of whisky like a besotted Robinson Crusoe.” But he has never faced a crisis as personal or grave as the prospect of life imprisonment in the cage of his newborn infant-monster. Should he keep it? Dare he kill it? Before he makes his final decision, Bird’s entire past seems to rise up before him, revealing itself to be a nightmare of self-deceit. The relentless honesty with which Oe portrays his hero — or antihero — makes Bird one of the most unforgettable characters in recent fiction."

From The Nicole Kline Experience: "Kenzaburo Oe’s novel A Personal Matter is one that is both private and traumatic. It details the life of Bird, a 27-year-old college dropout whose wife has just given birth to a deformed son. The child has a brain hernia, which means that even if he does live, he will most likely be a vegetable all his life. It would appear to Bird that the answer is obvious – let the child die, as opposed to dealing with the shame of having given birth to a monster. This sentiment is reflected in the view of his in-laws as well as the doctors at the hospital at which the baby is born. But then a divide occurs at the second, specialist hospital – those doctors want to keep the baby alive, and want to go so far as to perform an operation. Bird struggles with himself, trying to decide what to do – does he let the baby die? Or allow it to live, knowing it may never lead a normal life?"

Guts

2009-08-23T12:34:00.005-04:00

by Robert Nylen
From the NY Times Sunday Book Review, August 23, 2009: "It is haunting to read a memoir by a writer who was racing against incurable cancer to get his words on paper, and died in December 2008 shortly after completing his work. You open Robert Nylen’s book, “Guts,” with a mixture of sadness and curiosity, braced for the inevitable. Damn, he is going to make me care about him, and mourn his untimely death. I was torn between rushing through this absorbing and disjointed story or deliberately slowing the pace, aware that once the book ended, Nylen’s raw, funny, urgent voice would be forever stilled." Full Review.

Middlesex (2002)

2009-08-21T05:29:00.005-04:00

by Jeffrey Eugenides

The Barnes & Noble Review
Jeffrey Eugenides kept a fairly low profile after his first novel, The Virgin Suicides, caused a stir in 1993. With Middlesex, a sprawling yet intimate novel that earns the turning of every one of its 500-plus pages, he proves that the time was very well spent. Imagine a cross between E. L. Doctorow's classic Ragtime and one of the multigenerational epics of James Michener. Better yet, don't approach this book with any preconceptions -- just have an open heart and mind plus a willingness to let a novelist who knows what he's doing break a few storytelling rules.

Raised as a girl by her second-generation Greek-American family, Calliope (now Cal) Stephanides is physiologically a hermaphrodite and is more male than female. That's not giving away much -- Cal explains it on the first page. What's remarkable is that a book can start with such a revelation and still manage to be full of surprises. Narrated by Cal, the story also shares the thoughts, feelings, and intimate details of the lives of Cal's grandparents, parents, and other family members. In this omniscient first-person mode, we get an epic family saga, a journey from 1920s Greece to 1960s Detroit to contemporary Europe -- one that leads to a remarkably satisfying conclusion. To understand anyone, Eugenides seems to be implying, we need to know not only his or her (or in this case, "his/her") inner thoughts, but also those of all the ancestors whose DNA has contributed to the mix that created him/her.

"Sorry if I get a little Homeric at times," begs Cal. But she/he has nothing to apologize for. It's exactly that willingness to take this rich and accessible story over the top that makes Eugenides' novel so complexly and wonderfully moving. Lou Harry

I read this a few years ago and it was memorable and moving. Well worth the time and effort. Middlesex was the winner of the 2003 Pulitzer Prize for Fiction. DJE

An Uncertain Inheritance (2007)

2009-07-17T22:05:00.003-04:00

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

2009-07-11T06:54:00.004-04:00

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 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:

2009-07-05T20:29:00.008-04:00

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.

Rules for Old Men Waiting (2005)

2009-06-23T06:14:00.005-04:00

by Peter Pouncey

This is a short, moving, elegiac novel that deals with grief, aging and facing death. I read it a few years back and plan to revisit it. We think that fiction, too, can be "pathography."

From Publisher Weekly: "From Publishers Weekly
Starred Review. Begun in 1981, this slender, unpretentious, lyrical and deeply moving novel by the president emeritus of Amherst College was more than two decades in the making. The year is 1987, and octogenarian Robert MacIver is alone, in failing health and debilitated with grief over his wife's recent death, hiding out in the dead of winter in a remote, unheated Cape Cod house "older than the Republic." Shocked into confronting the seriousness of his plight when the timbers of the front porch collapse under his weight, he retreats back inside the house and realizes that he wants to live out his remaining days—however few in number—with dignity. Thus resolved, he formulates his Ten Commandments for Old Men Waiting, the seventh of which is "Work every morning." And so he decides to write a short story about an infantry company in "No Man's Land" in WWI, which will draw on the interviews he conducted with victims of poison gas that he used for his first book, the well-received oral history Voices Through the Smoke. Pouncey's novel thus becomes a story within a novel; and MacIver's story is elegantly juxtaposed with his memories from his own long life. Pouncey's first book is proof that sometimes greatness comes slowly and in small packages. Agent, Aaron M. Priest Literary Agency. (Apr.)

The Soul of Medicine (2009)

2009-06-14T06:05:00.014-04:00

by Sherwin Nuland
In his essay Nurse and Patient, Osler wrote "To talk of disease is an Arabian Nights' entertainment." While, this book is not exactly a pathography, many of you will want to spend some time with it, since it's a great read and gives insight to both the illness experience and the mind-set of doctors.

For "The Soul of Medicine," Nuland has asked 16 physicians to tell the story of their most memorable patient and, with two of his own additions, cobbled them together into a modern-day version of "The Canterbury Tales." Here, Canterbury is the fictionalized name of the prestigious medical institution where our storytellers' practices intersect, and the tales themselves are delivered by specialty: The Urologist's Tale, The Pediatrician's Tale and so on.

The Soul of Medicine is comprised of 21 short "Illness Narratives," each told in the voice of a different medical specialist. Most are fascinating (at least to other physicians). One wonders if a similar book with chapters told by patients with different disorders might even be better. One thinks of Mandel and Spiro's When Doctors Get Sick (a memorable compendium) in this context.

Cancer Made Me a Shallower Person (2006)

2009-06-06T07:11:00.004-04:00

A Memoir in Comics
by Miriam Engelberg
From Publishers Weekly: "Stricken with breast cancer at a disturbingly young age (43), Engelberg turned to cartooning to cope; the resulting work is both powerful and very funny. She starts at the very beginning, while awaiting her diagnosis. The story follows the cancer trail all the way through surgery, chemo, support groups, wigs, the distraction of cartooning, moving house while completely nauseated and the horror of a second diagnosis. In contrast to the heavy subject matter, Engelberg's artwork is naïve to the extreme, though it has some charm. The true strength of the book is its fusion of the deadly serious with the absurd, in the finest tradition of black humor. Engelberg's narrative is riveting. She traces the trajectory of both her diagnosis and her growing obsession with the crossword puzzle in the newspaper's TV guide—"must...avoid...inner...thought... processes," she announces. The reader discovers the author's difficulties in appreciating life's special moments, and witnesses the many compliments she receives on her post-chemo wig. We follow the way the medical profession communicates, the things people say when they don't know what to say and the utter incomprehensibility of not knowing if you're documenting your own slow death. It's extremely honest and extraordinarily powerful. (May) Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved."

Also see: Cancer Vixen by Marissa Acocella Marchetto (another graphic cartoon pathography) You will need to scroll down for this post.

Lost in America (2003)

2009-06-06T06:47:00.011-04:00

A Journey With My Father
by Sherwin Nuland

From Litt Med NYU Annotations: "Sherwin Nuland has had a distinguished career as a surgeon on the faculty at Yale University and as an author with interests in history of medicine, medical ethics, and medical humanism. In this memoir we become acquainted with a different side of Nuland, that of son to a widowed, immigrant father with whom the author had a complex and difficult relationship.

We learn also that Nuland has suffered from depression on and off since he was preadolescent, experiencing a major breakdown in midlife. This book attempts to make sense out of the family dynamics and the depression. At the same time, it describes the insular world of Russian Jewish immigrants living in New York City's Lower East Side and Bronx in the first half of the 20th century.

This is a well written, absorbing, and sometimes painful-to read-memoir. Nuland attempts to understand his difficult relationship with his father through an exploration of memory, cultural background, and by narrative reconstruction. He is often brutally frank about the fear, mortification, disdain inspired in him by his father. "Maniacal fury," "tormentor," "smothering power," "entangling shame" are terms he uses to describe his father's mood, behavior, and his own feelings about the man. Nuland understands, retrospectively, his own adolescent self-absorption and his near abandonment of Meyer as a young adult."

NY Times Review.

Available in book form, CD and cassette tapes (latter two read by the author) .

Against Medical Advice (2008)

2009-06-02T22:17:00.006-04:00

One Family's Struggle with an Agonizing Medical Mystery
by James Patterson, Hal Friedman and Cory Friedman
This is the true story of Cory Friedman and his family's decades-long battle for survival in the face of extraordinary difficulties and a maddening medical establishment. It is a heart-rending story of struggle and triumph with a climax as dramatic as any James Patterson thriller.
Cory woke up one morning when he was five years old with the uncontrollable urge to twitch his neck. From that day forward his life became a hell of irrepressible tics and involuntary utterances, and Cory embarked on an excruciating journey from specialist to specialist to discover the cause of his disease. Soon it became unclear what tics were symptoms of his disease and what were side effects of the countless combinations of drugs. The only certainty is that it kept getting worse. Simply put: Cory Friedman's life was a living hell.

DJE: This is a moving book. I listened to it from Audible.com. It is maddening to see what the medical establishment did to Cory, who had Tourette's syndrome. I have seen the same thing time and time again with psychiatric patients. It's easy to throw a cocktail of meds at a patient instead of trying to understand and work with him.

Push by Sapphire

2009-05-23T12:23:00.008-04:00

"Claireece Precious Jones endures unimaginable hardships in her young life. Abused by her mother, raped by her father, she grows up poor, angry, illiterate, fat, unloved and generally unnoticed. So what better way to learn about her than through her own, halting dialect. That is the device deployed in the first novel by poet and singer Sapphire. "Sometimes I wish I was not alive," Precious says. "But I don't know how to die. Ain' no plug to pull out. 'N no matter how bad I feel my heart don't stop beating and my eyes open in the morning." An intense story of adversity and the mechanisms to cope with it." From Amazon

Sapphire (aka Ramona Lofton) has had life and teaching experiences that give her insight into some of the topics covered in Push. The abridged audio version of the book is read by Sapphire and is extraordinary. One of the few abridged audio books that "works." The Alternative School teacher, Ms. Rain, is based on Sapphire's work with kids in similar NYC schools. I am just finishing listening to the audio version. The reading is powerfully moving, the subject is important. It's a topic we prefer not to know about; but it is reality for many people and Sapphire puts it under an eloquent unforgiving lens. Read or listen to this book!

The film Precious which will be released soon is a dramatization of the book.

A Season in Hell by Marilyn French

2009-05-17T13:41:00.008-04:00

This is the harrowing story of Ms. French's odyssey in the country of the sick. It begins with esophageal cancer and progresses to the sequelae of radiation and chemotherapy which affected her heart, gastrointestinal tract, bones, lungs, kidneys, bladder and more. She defied the odds and lived 19 years cancer free. This is a gutsy gripping story.

Ms. French, a respected feminist intellectual and writer, died in May of 2009. In A Season in Hell, she is candid about her physicians and care givers. There is much in this book to instruct aspiring doctors, nurses, therapists and care givers.

Her obituary which appeared in the NY Times is worth reading, too. Click here.

Quote: "Enervation had turned me into a docile patient, helpless, caught, trapped in a system. I felt that the doctors were caught in it, too. The department, the hospital, the huge system, encompassed us all, and nothing could be done about it. They were killing me and I was letting them. There was no way to stop it." (p. 110)

This is a tough, extraordinary read. You can purchase a used copy at ABE Books.

Never Let Me Go

2009-05-17T06:39:00.005-04:00

Reviewed by Deborah Alecson.

Never Let Me Go, a novel by Kazuo Ishiguro is about the absolute extreme human beings would go to negate their mortality. This extreme is the established practice of cloning. Ishiguro writes about a world that could be envisioned as science fiction, but he writes from the perspective of one of the cloned, Kathy. While the reader has entered foreign terrain, continued reading brings forth a situation that indeed can be a reality towards which our present culture is headed. Kathy is a “copy” of a person, known as a “possible.” She was created to donate her vital organs. Prior to donating, she is trained as a “carer” for a clone who is in the process of organ donation. (As clones, they are not spared the suffering of surgeries, recuperations, and physical decline.)

What are the ethical issues this story poses? The ethical perspective of deontology, for example, is strictly against using a person as a means to another person’s happiness. Kathy and the other characters portrayed, come across as human by virtue of having feelings and attachments to one another. This brings to mind the humanity of The Tin Man, The Scarecrow, and The Lion in The Wizard of Oz. It is clearly morally unjust and repugnant to use Kathy and the others as means to the ends of their “possibles.” However, they are not human, born of the flesh. They are created by technology. They have a defined purpose that is not one they have chosen, for they do not possess free will. As nonhumans then, is it morally just and even a good that they exist to donate their organs?

There is, however, the overarching question of why people would even bother with clones. Isn’t the lifespan that we currently have long enough? Why the need to extend it? Is the goal to avoid the misery that accompanies disease? And, are these clones something that only the rich can afford? Do we want a clone for every Tom, Dick, and Harry or should we be particular and clone the Dalai Lamas of the world? Or, the Donald Trumps of the world? I am sure the Dalai Lama would be the last person on earth who would seek a clone. It is antithetical to Buddhism, as well as to the spiritual revelations of all religions. Donald Trump, on the other hand….

The possibility of cloning is consistent with a narcissistic culture such as ours. We want to avoid illness and its harsh lessons and keep death at bay. Ishiguro offers us this technological potential from the perspective of the clones, for it might be the only way that we can fully grasp the fuller implications.

Comment: I found this book haunting, dark and memorable. It is worth reading. Deborah raises the issues it addresses cogently and compellingly in her precis. DJE

Honor Thy Children:

2009-05-16T08:03:00.005-04:00

One Family's Journey to Wholeness
by Molly Fumia

"This heartbreaking story of a Japanese American couple who experienced the tragic deaths of all three of their children-two from AIDS, one a murder victim-records the family's trajectory from homophobia and denial to emotional healing. Alexander Nakatani, a San Jose, Calif., social worker, and his wife, Jane, an elementary school teacher, grew up in Hawaii in a culture that prized reticence, hard work, denial of self. They virtually disowned their firstborn son, Glen, upon learning he was gay. Troubled, sullen, secretive, raised by parents who feared he was not "normal," Glen left home in 1977 at age 15, living on college loans and forged checks; he died of AIDS in 1990. Greg, the middle son, a macho, heterosexual engineering student, was shot to death in 1986 in a dispute with an illegal Mexican immigrant over a car. The Nakatanis were initially horrified to discover that Guy, their youngest son, was gay, but anger and shame were gradually supplanted by unconditional love. Diagnosed HIV-positive, Guy became a health educator, lecturing at schools and businesses on the dangers of HIV and of homophobic ignorance-with his father at his side as a fellow speaker. Wheelchair-bound and partly blind from AIDS complications, Guy, 26, died in 1994. Skillfully using letters, interviews, conversations and oral testimony, Fumia, author of previous books on grieving, gives her moving study of family dynamics complexity." Copyright 1996 Reed Business Information, Inc.

This is a moving and memorable book that can be purchased from ABE Books for ~ $1.00 plus shipping.

A Journey Through Darkness:

2009-05-13T11:47:00.007-04:00

My Life With Chronic Depression - NYTimes.com (Sunday Magazine, May 10, 2009)
by Daphne Merkin
"Depression, truth be told, is both boring and threatening as a subject of conversation. In the end there is no one to intervene on your behalf when you disappear again into what feels like a psychological dungeon — a place that has a familiar musky smell, a familiar lack of light and excess of enclosure — except the people you’ve paid large sums of money to talk to over the years. I have sat in shrinks’ offices going on four decades now and talked about my wish to die the way other people might talk about their wish to find a lover."

This is a fine narrative of the author's travail in Depression's Dark Wood. It highlights the disconnects between patients and the professionals and sheds some light on the vagaries of recovery. William Osler commenting on Robert Burton's tome "The Anatomy of Melancholy" wrote that if the work had just been a medical text it would have “since sunk in the ooze” like so many other 17th century medical works but it lives on because of the human sympathy of his approach. So too with this fine essay. Along with Burton's opus, Ms. Merkin's article has the power to illuminate the darkness and educate patients, families and professionals.

Full article: A Journey Through Darkness.

I'm Looking Through You (2008)

2009-05-12T21:07:00.005-04:00

Growing Up Haunted. A Memoir by Jennifer Finney Boylan

From Publisher's Weekly: "Starred Review. Boylan, an English professor, novelist and memoirist (She's Not There: A Life in Two Genders), tells of growing up in a haunted house in Pennsylvania, where phantom footfalls and spectral mists were practically commonplace. This was a fitting-enough setting for young Boylan, then a boy who longed to become a girl. Back then I knew very little for certain about whatever it was that afflicted me, she writes. [I]n order to survive, I'd have to become something like a ghost myself, and keep the nature of my true self hidden. In 2006, years after her sex change, Boylan returned to her childhood home with a band of local ghostbusters as she struggled to reconcile with her past as James Boylan, as well as her memories of family members she'd loved and lost there. This memoir is better suited for those interested in broader human truths than in fact (a disclaimer in the author's note explains that she's taken liberties in service of the story); readers in the former category are in for a treat. Boylan writes with a measured comedic timing and a light touch, affecting a pitch-perfect balance between sorrow, skepticism and humor. In spite of the singularity of Boylan's circumstance, the coming-of-age story has far-reaching resonance: estrangement in one's own home, alienation in one's own skin and the curious ways that men and women come to know themselves and one another."

Jennifer Boylan's Web Site

Jennifer Boylan "No Dumb Questions."

See NY Times Op-Ed "Is My Marriage Gay" by J.F. Boylan

Breath: Life in the Rhythm of an Iron Lung : a Memoir

2009-05-11T20:17:00.006-04:00

By Martha Mason
Published by Down Home Press, 2003
ISBN 1878086952, 9781878086952
300 pages

"I live with a stable of nightmares, " Martha Mason writes, "but hope keeps them in harness." Some might wonder how Martha could have clung to hope at all. In 1948, on the day of the funeral of her adored older brother Gaston, a quick victim of the great polio epidemic, Martha was struck with the same dreaded disease. After a year in hospitals, she was sent back to her home in the village of Lattimore in the cotton-growing hills of western North Carolina. She was completely paralyzed, with only her head protruding from an 800-pound yellow metal cylinder that breathed for her. Doctors told her parents that she likely wouldn't live for more than a year. But the doctors hadn't counted on Martha's will, or the hope that drives her still. An avid reader, she dreamed of being a writer, and after finishing high school in her iron lung, she went on to nearby Gardner-Webb College, then to Wake Forest University, where she was graduated first in her class. After college, Martha attempted to begin a career as a writer, dictating to her mother, who had devoted her own life to Martha's care. But her father suffered a massive heart attack, leaving him, too, an invalid. Her mother, caring for both, had little time for Martha's dictation. Technology revived Martha's dream. A voice-activated computer allowed her to write without assistance. She got it early in 1994 in a time of great despair. A devastating stroke had altered her mother's personality, causing her to turn on Martha, and eventually to revert to childhood. Martha had to become her mother's keeper, and to run a household from her iron lung. To help her deal with the crisis, Martha began writing about her mother's selfless love. As she wrote,she found herself telling her own story, without self-pity or sentimentality, and with her usual courage, grace, and humor. Breath will make readers laugh and cry, sometimes at the same time. It is a breath-taking memoir.

Martha Mason died in her home in Lattimore, NC on May 4, 2009. NY Times Obituary.

We have been trying to obtain a copy of Breath to review but have not been successful yet. It is in the collections of many NC public libraries.

Not Yet by Wayson Choy (2009)

2009-04-26T13:38:00.007-04:00

A Memoir of Living and Almost Dying

From Amazon.ca: "Framed by Wayson Choy’s two brushes with death, Not Yet is an intimate and insightful study of one man’s reasons for living.

In 2001, Wayson Choy suffered a combined asthma-heart attack. As he lay in his hospital bed, slipping in and out of consciousness, his days punctuated by the beeps of the machines that were keeping him alive, Choy heard the voices of his ancestors warning him that without a wife, he would one day die alone. And yet through his ordeal Choy was never alone; men and women, young and old, from all cultures and ethnicities, stayed by Choy’s side until he was well. When his heart failed him a second time, four years later, it was the strength of his bonds with these people, forged through countless acts of kindness, that pulled Choy back to his life."

Wayson Choy is a beloved Canadian author. It's strange that he is not much read in the "States." Not Yet is a remarkable book that is one of the best illness narratives we have. It weaves cross-cultural themes into the narrative as well.

Publisher information: Not Yet

Lost Lullaby: Deborah Alecson 1995

2009-04-24T05:49:00.005-04:00

By Deborah Golden Alecson
Published by University of California Press, 1995
ISBN 0520088700, 9780520088702 207 pages

From Google Books. "Lost Lullaby makes one think the unthinkable: how a loving parent can pray for the death of her child. It is Deborah Alecson's story of her daughter, Andrea, who was born after a full-term, uneventful pregnancy, weighing 7 pounds 11 ounces, perfectly formed and exquisitely featured. But an inexplicable accident at birth left her with massive and irreversible brain damage.
Told in a mother's voice, with a simplicity and directness that heighten the intensity of the drama that unfolds, Lost Lullaby reaffirms the human dimension of what is too often an abstract and purely theoretical discussion. During the two months that Andrea spent in the Neonatal ICU, Ms. Alecson spoke with lawyers, doctors, and ethicists in an effort to understand the legal, medical and ethical implications of her plight. She recounts those discussions and describes legal cases that have a direct bearing on her own situation. Her battle--both in coming to the agonizing decision to let her child die and in convincing the medical and legal establishments to respect that decision--will engender empathy for the plight of many families, and an awareness of the need to use medical technology with restraint. It is a must-read for everyone who cares about how we make life-and-death decisions on these new medical, legal, and moral frontiers."
This is an important book -- a must read. It is difficult and painful because it looks at issues that are usually glossed over. Can be obtained from abebooks.com DJE

The Body Broken by Lynne Greenberg (2009)

2009-04-12T14:57:00.006-04:00

From Random House: "The Body Broken is a gorgeously told and intensely moving account of one woman’s extraordinary odyssey into a life of chronic pain–and of the unyielding resilience of the human spirit.

At age nineteen, Lynne Greenberg narrowly survived a devastating car crash. When her broken neck healed–or so everyone thought–her recovery was hailed as a medical miracle and she returned to normal life. Years later, she seemed to have it all: a loving husband, two wonderful children, a peaceful home, and a richly satisfying job as a tenured poetry professor. Then, one morning, this blissful façade shattered–the pain in her neck returned in the most vicious way. A life with physical agony ensued.

Greenberg realized that she had been living for years on borrowed time. As she and her family navigated an increasingly complicated web of doctors and specialists, Greenberg taught herself to fight her own battles–against a medical system ill-equipped to handle patients with chronic pain, and against the emotional pitfalls of a newly restricted life. Drawing on her family’s support, her own indomitable spirit, and an intense connection to the poetry she taught, Greenberg found the strength to return to a productive and satisfying–if irrevocably changed–life. This deeply personal saga takes us to the heart of a family’s struggle to survive a crisis, and shows us how, at the most profound levels, such an odyssey affects a patient’s marriage, the ability to parent, family, work, and friendships.

The Body Broken is a powerful, lyrical story of one woman’s remarkable determination and breathtaking courage, as she puts mind over matter in the struggle to reclaim her life.

This is truly an important book. It is in the tradition of Susanna Kaysen's "The Camera My Mother Gave Me." "Body Broken" is literate, at times maddening, but an important opportunity for care givers to learn from an articulate patient. DJE

The Bell Jar

2009-03-29T06:17:00.004-04:00

From Amazon: Plath was an excellent poet but is known to many for this largely autobiographical novel. The Bell Jar tells the story of a gifted young woman's mental breakdown beginning during a summer internship as a junior editor at a magazine in New York City in the early 1950s. The real Plath committed suicide in 1963 and left behind this scathingly sad, honest and perfectly-written book, which remains one of the best-told tales of a woman's descent into insanity.

I just read this book. It is extraordinary, powerful and sad. The depiction of her hospital stay is not that different from Norah Gilbert's experiences in "Voluntary Madness" except that shock treatment is no longer in vogue. Elyn Saks' "The Center Can Not Hold" has similar passages. I found "The Bell Jar" somewhat painful to read. But, it is brilliant and insightful (to a degree). The etiology of her depression is not explored. Was it her father's untimely death or a near rape she experienced just before the breakdown? Shakespeare's words ring true:
The lunatic, the lover, and the poet
Are of imagination all compact.

Divided Minds: Twin Sisters and Their Journey Through Schizophrenia (2005)

2009-03-11T21:32:00.004-04:00

From Publishers Weekly
This harrowing but arresting memoir—written in alternating voices by identical twins in their 50s reveals how devastating schizophrenia is to both the victim and those who love her. The condition, which afflicts Pamela (an award-winning poet), can be controlled with drugs and psychiatry, but never cured. When the twins were young, Pamela always outshone Carolyn. But in junior high, Pamela was beset by fears and began a lifelong pattern of cutting and burning herself. After the two entered Brown University, Pamela's decline into paranoia accelerated until she attempted suicide. During the ensuing years of Pamela's frequent breakdowns and hospitalizations, Carolyn became a psychiatrist, married and had two children. Empathetic and concerned, Carolyn nonetheless conveys her overwhelming frustration. and occasional alienation from her sister, when she is unable to help. Pamela's schizophrenia caused their father (a physician who edited a book on empathy) to sever his relationship with her. Remarkably descriptive, Pamela's account details how it feels to hear voices and to suspect evil in everyone. Though she struggles with her medications, Pamela remains a committed poet and is now reconciled with her father and close to her twin. 8 pages of b&w photos.
Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.

Voluntary Madness by Norah Vincent

2009-02-28T11:54:00.003-05:00

My Year Lost and Found in the Loony Bin

You might call this: Slouching Towards Bedlam (Vincent's own words). It is a very interesting book that may not appeal to persons with psychiatric disease to whom drugs are the answer or to those who idolize psychiatrists. It is well-worth reading.

From Publishers Weekly: Vincent's first trip to a mental institution—to which the writing of Self-Made Man drove her—convinced her that further immersion would give her great material for a follow-up. The grand tour consists of voluntary commitments to a hospital mental ward, a small private facility and a boutique facility; but Vincent's efforts to make a big statement about the state of mental health treatment quickly give way to a more personal journey. An attempt to wean herself off Prozac, for example, adds a greater sense of urgency to her second research trip, while the therapists overseeing her final treatment lead her to a major emotional breakthrough. Meanwhile, her fellow patients are easily able to peg her as an emotional parasite, though this rarely stops them from interacting with her—and though their neediness sometimes frustrates her, she is less judgmental of them than of the doctors and nurses.

Under the Eye of the Clock

2009-02-26T05:47:00.007-05:00

From Publisher's Weekly: Severely disabled by congenital cerebral palsy, Irish poet Nolan was 15 years old when he was acclaimed "a brilliantly gifted young writer" in the tradition of Yeats and Joyce. At 21, he wrote this memoir in the guise of an alter ego, Joseph Meehan. As he speaks of Joseph, "locked for years in the coffin of his body," paralyzed and mute, we are made aware of Nolan's herculean efforts and those of his family to release him from his isolation. A major breakthrough occurs when he is able to use a typewriter, then a word processor, working the keyboard with a stick affixed to his head. His physical triumphs and defeats are recorded with a striking absence of self-pity. In passages that are lyrically descriptive, there is abundant word coinage and expressive neologisms that capture Nolan's thoughts on sexuality and gratitude for the ambiance that supported him during his year at Trinity College. As Carey, his professor, states in the preface, Nolan's handicap is "a positive factor" rather than a modifying condition in his impressive achievement.

Christopher Nolan died at age 43 on February 20, 2009. NY Times Obit. He apparently asphixiated on food.

The Quiet Room by Lori Schiller

2009-02-22T14:30:00.004-05:00

From Amazon: Schiller, raised in a loving, affluent family in a New York City suburb, was 17 when she first heard the "voices" that would take over her life. Willing herself to appear normal, she resisted the brutally disparaging voices that urged her towards violence and suicide, and she succeeded in graduating from college. But early in 1982, at age 23 and after a suicide attempt, she was persuaded by her parents to admit herself to a mental hospital. For the next seven years, Schiller's auditory hallucinations worsened, and she repeatedly attempted suicide. Diagnosed with schizo-affective disorder, she underwent shock therapy and was treated with antipsychotic drugs. As the symptoms of her disease waxed and waned, Schiller was in and out of hospitals and treatment programs; her weight soared and she became dependent on cocaine. Entering a program at New York Hospital, she suggested to her therapist that she try a new drug, clozapine, which gradually helped her to cope with her illness. Schiller now works at a halfway house. With Wall Street Journal reporter Bennett, she presents her stunning story of courage, persistence and hope.

This book compliments Elyn Saks, "The Center Cannot Hold."

Growing Up Fast by Joanna Lipper

2009-02-15T16:44:00.005-05:00

This is an important and moving book. From Ms. Lipper's web site: "Growing Up Fast tells the life stories of six teen mothers from Pittsfield, Massachusetts, a post-industrial city in Berkshire County that was until the late 1980's, a manufacturing base for the General Electric Company. It documents the lives of these teenagers, their families and members of the community, as they witness factory closings and the transformation of their hometown under the strain of economic and social upheaval and the influx of drugs."

This is also a DVD.

John Updike on Psoriasis

2009-02-11T16:23:00.013-05:00

John Updike is arguably one of the finest writers of contemporary America. His oeuvre is impressive. It is well-known that Updike had severe psoriasis and has written candidly on this subject. The first pathographical piece is relatively short and first appeared in the New Yorker magazine. “From The Journal of a Leper,” The New Yorker, July 19, 1976, p. 28. You can contact DJ Elpern for a PDF.

The second essay is easier to find. It is in the book "Self-Consciousness," Chapter ii. At War With My Skin. While both of these are worth reading, the second piece is more comprehensive.

Self-Consciousness can be purchased form Amazon or used from ABE Books

These are Updike's two essays on psoriasis that wer published in the New Yorker. They are available at Dermatology Central.
From the Journal of a Leper, The New Yorker, July 19, 1976, Pages 28 - 33

At War With My Skin, The New Yorker, September 2, 1985, Pages 39 - 57

New Yorker ABSTRACT: PERSONAL HISTORY telling how the writer has lived with psoriasis, a metabolic disorder that causes the epidermis, which normally replaces itself in the course of several days, to speed up the process and to produce excess skin cells. A tendency to it is inherited. The writer's mother had it and her mother had it. The disease favors the fair, the dry-skinned. It keeps you thinking. Strategies of concealment ramify and self-examination is endless. Because of his skin problem writer chose a profession that did not demand being presentable. He married young because he found a comely & gracious female who forgave him his skin. They moved to Ipswich, Mass, because the town had a great beach. Baking in the sun on the beach relieved the skin symptoms. Tells about their life in Ipswich. In August, to escape local biting flies they left and rented a house in Martha's Vineyard. In the winter he went to the Caribbean for the sun. Tells about these visits. In the fall of 1974 he left his wife and Ipswich. The next fall his skin was bad and he flew to St. Thomas but the sun did not help. At 42 he had worn out the sun At this time a few blocks from where he was living in Boston, dermatologists at Mass. Gen. Hospital were developing the PUVA program to treat psoriasis. lt was still in the experimental stage but he was accepted into the program. In a few months pills and artificial light did what salt water and sun could no longer do. His skin, was clear.

The Siege & Exiting Nirvana

2009-02-02T06:16:00.005-05:00

From Google Books: At the age of two, in 1960, Jessy Park was remote, withdrawn, unable to walk or talk, yet oddly content within the invisible walls that surrounded her. Doctors were baffled. The study of autism was still in its infancy. Jessy's family stepped in. This book records the challenges and rewards of the first eight years of Jessy's life.

Reprising her own now classic work The Siege, Clara Claiborne Park gives us a moving, eloquent portrait of Jessy as an autistic adult -- still struggling with language, with hypersensitivities and obsessions, and with the social interactions that most of us take for granted, but at the same time achieving more than her parents could have hoped for, becoming an accomplished artist, and growing into an active member of her family and community.

For more on Jessica Park and her art.

Oliver Sacks called The Siege: A Family's Journey into the World of an Autistic Child "one of the first personal accounts of autism, and still the best -- beautiful and intelligent." Now, in Exiting Nirvana, Clara Claiborne Park continues the story of her daughter Jessy. In this moving, eloquent memoir, we see Jessy's progressive journey out of her isolated "Nirvana" into the world we all share. It is an honest and captivating story of emergence, perservance, and love.

The Center Cannot Hold by Elyn Saks

2009-01-28T21:24:00.008-05:00

From Google Books: Elyn R. Saks is an esteemed professor, lawyer, and psychiatrist and is the Orrin B. Evans Professor of Law, Psychology, Psychiatry and the Behavioral Sciences at the University of Southern California Law School, yet she has suffered from schizo-affective disorder (a form of schizophrenia) for most of her life, and still has ongoing major episodes of the illness. The Center Cannot Hold is the eloquent, m oving story of Elyn's life, from the first time that she heard voices speaking to her as a young teenager, to attempted suicides in college, through learning to live on her own as an adult in an often terrifying world. Saks discusses frankly the paranoia, the inability to tell imaginary fears from real ones, the voices in her head telling her to kill herself (and to harm others); as well the incredibly difficult obstacles she overcame to become a highly respected professional. This beautifully written memoir is destined to become a classic in its genre. The title is a line from "The Second Coming," a poem by William Butler Yeats, which is alluded to in the book.

The Center Cannot Hold: My Journey Through Madness

By Elyn R. Saks

Published by Hyperion, 2007

ISBN 140130138X, 9781401301385

340 pages

Also available in audio format.

This is an extraordinary book which gives insight into the mind of a professional with schzophrenia. It ranks with Kay Jamison's book, "An Unquiet Mind."

Here is a talk given by Elyn Saks to a lay audience at USC Law School. You will have to go to the posting of January 26, 2009. Saks bio.

Lucky by Alice Sebold

2009-01-24T10:00:00.005-05:00

From AllReaders.com:
1. This is the true story of the brutual assault and rape of Alice Sebold, author "Lovely Bones." This book is not for everyone because it details a quite disturbing rape in the first several pages. What follows is a realistic look at what a victim would experience as they go through their recovery and trial. The author is quite fortunate in that her rapist is caught and sentenced to a maximum sentence for the crime. While this book can be shocking at times, it gives an excellent insight to what a victim of this sort of crime would go through as they heal." Sonnet Davis, Resident Scholar

2. Alice Sebold documents the account of her rape in 1981, as a college freshman at Syracuse. The horrible incident is only the beginning--the book details all of the aftermath as well. She has to deal with telling the police, her friends, and family, who try to be supportive but don't know how to. She becomes known as "the girl who was raped" by fellow classmates. She finishes out her first year of college, discovering that writing has become a method of catharsis in dealing with the rape.
Later, Alice faces her rapist in court and must testify against him. Maintaining a normal life as a college student has become difficult for her. She makes some friends and even goes on a few dates, but the healing process is a long one, and the rape haunts her for some time. However, despite the rather graphic description of the rape, the novel is overall triumphant and encouraging." Cassie, Resident Scholar

A powerful, dark, memorable book. Took bravery to write.

The Tennis Partner by Abraham Verghese

2009-01-10T10:21:00.004-05:00

From Publishers Weekly
In his eloquent memoir, My Own Country, Verghese described a parallel story, that of a stranger (himself) and AIDS both becoming part of a rural Tennessee town. Once again, Verghese weaves his own story with that of a place and another person to come up with something moving and insightful. As he tries to cope with a new job on the faculty of Texas Tech School of Medicine, the move to El Paso and the breakdown of his marriage, he meets David, a medical student and former tennis pro. Tennis matches with David reawaken Verghese's passion for the game, and soon the two become regular partners. Their connection is complicated by their shifting roles: Verghese, David's teacher in the hospital wards, becomes his student on the tennis court. For Verghese, the matches offer an escape from loneliness; for David, a recovering drug addict, even more is at stake. Only on the court can they reach a state of grace: "our tennis partnership was special, different, sacred like a marriage." Ultimately, as David's life takes some disturbing turns, Verghese finds himself forced to choose between his role as friend and that of authority figure. While David's story provides the main narrative drive of the book, it's interwoven with Verghese's descriptions of his AIDS patients, his relationship with his sons and meditations on El Paso's distinctive landscape. It's a hard trick but Verghese combines all these elements into a cohesive whole, moving easily between moments of quiet reflection and anxious anticipation. If, as he writes, "to tell a life story [is] to engage in a form of seduction," then Verghese is a master of romance. Agent, Mary Evans. Author tour.-- to engage in a form of seduction," then Verghese is a master of romance. Agent, Mary Evans. Author tour.

Also see excellent review "Match Point" from the NY Times.

An Unquiet Mind by Kay Jamison

2009-01-10T06:15:00.008-05:00

Kay Jamison's An Unquiet Mind is a memorable ride. In our opinion, it is perhaps the single most important book about bipolar illness. It took great courage to write this, and it gives the medical and lay reader great insight into this disorder.

From Amazon Review: Amazon.com Review
In this book Kay Jamison turns the mirror on herself. With breathtaking honesty she tells of her own manic depression, the bitter costs of her illness, and its paradoxical benefits: "There is a particular kind of pain, elation, loneliness and terror involved in this kind of madness.... It will never end, for madness carves its own reality." This is one of the best scientific autobiographies ever written, a combination of clarity, truth, and insight into human character. "We are all, as Byron put it, differently organized," Jamison writes. "We each move within the restraints of our temperament and live up only partially to its possibilities." Jamison's ability to live fully within her limitations is an inspiration to her fellow mortals, whatever our particular burdens may be. --Mary Ellen Curtin

"I have often asked myself whether, given the choice, I would choose to have manic-depressive illness. If lithium were not available to me, or didn't work for me, the answer would be a simple no... and it would be an answer laced with terror. But lithium does work for me, and therefore I can afford to pose the question. Strangely enough, I think I would choose to have it. It's complicated... I honestly believe that as a result of it I have felt more things, more deeply; had more experiences, more intensely; loved more, and have been more loved; laughed more often for having cried more often; appreciated more the springs, for all the winters... Depressed, I have crawled on my hands and knees in order to get across a room and have done it for month after month. But normal or manic I have run faster, thought faster, and loved faster than most I know."-- Kay Redfield Jamison

The Jester Lost His Jingle by David Saltzman

2009-01-07T15:57:00.014-05:00

From The Jester.org: The Jester Has Lost His Jingle was written and illustrated by David Saltzman as his senior project at Yale before he died of Hodgkin's disease on March 2, 1990, 11 days before his 23rd birthday.
The 64-page hardcover full-color book has reached the best-seller lists of the New York Times, Los Angeles Times, USA Today and Publishers Weekly. The self-empowering message of the story - "When you're feeling lonely, or sad, or bad or blue, remember where laughter's hiding…It's hiding inside of YOU!" - is never lost on youngsters.
In David Saltzman's charming tale, The Jester awakes one morning to find laughter missing in his kingdom. So he and his helpmate, Pharley, "a piece of talking wood," set off on a quest to find it. They ultimately discover that not only can laughter redeem a weary world, it also can provide the best tonic for anyone facing seemingly insurmountable obstacles.

In a moving Afterword, Maurice Sendak, the esteemed children's book author-artist of Where the Wild Things Are, writes about David's Jester:
"Our lives briefly touched. But I remember him among all the eager, talented young people I've bumped into along the way. I remember the face - the enthusiasm - the intelligence and unaffected extraordinariness of David Saltzman. It is difficult to remember all the bright, promising youngsters. It is easy to remember David.
That he died before his 23rd birthday is a tragedy beyond words. That he managed through his harrowing ordeal to produce a picture book so brimming with promise and strength, so full of high spirits, sheer courage and humor is nothing short of a miracle. Even the rough patches that David the artist would surely have set to right had he been given the time become all the more precious for the wild light they shed on his urgent, exploding talent.
David was a natural craftsman and storyteller. His passionate picture book is issued out of a passionate heart.
David's Jester soars with life."

Here is a tribute to David Salzman.

As I Live and Breathe

2009-01-07T15:31:00.005-05:00

From Google Reader: Jamie Weisman was a patient long before she was a doctor. She was born with a rare defect in her immune system that leaves her prey to a range of ailments and crises and that, because it is treatable but not curable, will keep her a patient for life. In this probing and inspiring book, she brings her sojourns on both sides of the doctor-patient divide to bear on the issues of the flesh that preoccupy us all. It is a worthy addition to the best that has been written about our physical selves, a meditation on our extraordinary powers of healing and the limitations that leave intact the miracle and tragedy of being.

From Curled Up With A Good Book: Jamie Weisman is a doctor with true empathy. Empathy is not just feeling pity for someone, but is the ability to put yourself in another person’s shoes and walk around in them. To know what that person knows in that situation, to understand exactly how they feel. Jamie Weisman suffers from a congenital immune deficiency disorder.

It took eleven years of misdiagnosis, unnecessary surgery, bone marrow biopsies and the insult of being called a hypochondriac. After all of this, being around good and bad doctors, Jamie decided to become one herself. Her unique understanding of what a patient feels gives her the ability to comfort her patients, to help them understand what they are being told and how it will affect them. She can put herself in their shoes and walk around because she’s been there.

Anatomy of an Illness by Norman Cousins

2009-01-01T14:43:00.005-05:00

Full title: Anatomy of an Illness as Perceived by the Patient

From Amazon: Anatomy of an Illness was the first book by a patient that spoke to our current interest in taking charge of our own health. It started the revolution in patients working with their doctors and using humor to boost their bodies' capacity for healing. When Norman Cousins was diagnosed with a crippling and irreversible disease, he forged an unusual collaboration with his physician, and together they were able to beat the odds. The doctor's genius was in helping his patient to use his own powers: laughter, courage, and tenacity. The patient's talent was in mobilizing his body's own natural resources, proving what an effective healing tool the mind can be. This remarkable story of the triumph of the human spirit is truly inspirational reading.

DJE: This is a classic and well worth reading. It is can be gotten from many sources relatively inexpensively.

Time on Fire by Evan Handler

2009-01-01T14:29:00.006-05:00

My Comedy of Terrors

From Library Journal
Until he was diagnosed with leukemia at the age of 24, Handler was a talented actor with a promising Broadway career and all the time in the world. But the bleak prognosis transformed time into "a concrete entity" not to be wasted. Resigning his understudy's role in Neil Simon's Biloxi Blues, Handler checked himself into New York's Memorial Sloan Kettering Cancer Center, embarking on a five-year battle to get a second chance at life and time. Adapted from his successful off-Broadway one-man play, Time on Fire recounts with grim humor Handler's hellish journey through the land of the sick: insensitive doctors; experimental chemotherapies sometimes worse than the illness; awkward sex with his girlfriend in a hospital bathroom; remission, relapse, remission. Self-absorbed (with the actor's desire to be at the center of attention), Handler does not always come across as an admirable figure; he was hard on his supportive parents and girlfriend. "I must have been sheer hell to be around," he admits. "But I know it saved my life on several occasions." His honesty and tenacity, however, enable readers to cheer his eventual recovery

DJE: This is a memorable, irreverent book. Well worth reading. It's hard to get, better to try a library unless you are willing to spend ~ $10 including shipping from ABE Books.

Darkness Visible by William Styron

2009-01-01T12:27:00.004-05:00

Amazon.com Review
In 1985 William Styron fell victim to a crippling and almost suicidal depression, the same illness that took the lives of Randall Jarrell, Primo Levi and Virginia Woolf. That Styron survived his descent into madness is something of a miracle. That he manages to convey its tortuous progression and his eventual recovery with such candor and precision makes Darkness Visible a rare feat of literature, a book that will arouse a shock of recognition even in those readers who have been spared the suffering it describes.

This book is < 100 pages. It is memorable and important.

Darkness Visible can be purchased inexpensively from ABE Books

Don't Leave Me This Way by Julia Fox Garrison

2009-01-01T12:11:00.003-05:00

Or When I Get Back on My Feet You'll Be Sorry

DJE Review on Amazon: This is a stunningly important book which should be required reading for all medical and nursing students, and all others who are concerned with the acute care and rehabilitation of stroke patients, whether they are part of the professional therapeutic team, family or friends. This book is destined to become a classic in the field. It will also be invaluable to patients and families who are facing daunting challenges. With humor and the wisdom of experience it is a guide to overcoming the often overly pessimistic predictions of many care givers. Ms. Garrison's book is well-written, indeed often funny. Beware... if you pick it up, you may be glued to your seat for hours.

Can be purchased for ~ $1.00 from ABE Books.

Being Brett by Douglas Hobbie

2009-01-01T11:48:00.006-05:00

Chronicle of a Daughter's Death

From Publishers Weekly
In this painfully honest account, Hobbie (Boomfell) details his daughter Brett's five-year battle with Hodgkin's disease. Brett, a talented 23-year-old artist, had just begun an independent life in San Francisco when she was diagnosed with lymphoma. Although the initial treatment appeared to be effective, the disease recurred and Brett continued chemotherapy and radiation, also undergoing a devastating bone marrow transplant. Hobbie paints a vivid picture of his energetic, loving daughter and their relationship, as well as the emotional impact of her condition on his wife, his other daughter and son and on Brett's incredibly supportive lover, Beth. When Brett's condition became hopeless, she returned with Beth to Massachusetts to be near her family. Hobbie's harrowing account of Brett's last days is a shattering portrait of how a family struggles through the loss of one of its beloved members.

This bok is available for ~ $1.00 from ABE Books

The Noonday Demon by Andrew Solomon

2009-01-01T11:43:00.002-05:00

From Publishers Weekly
"Depression is the flaw in love. To be creatures who love, we must be creatures who despair," begins Solomon's expansive and astutely observed examination of the experience, origins, and cultural manifestations of depression. While placing his study in a broad social contex-- according to recent research, some 19 million Americans suffer from chronic depression--he also chronicles his own battle with the disease. Beginning just after his senior year in college, Solomon began experiencing crippling episodes of depression. They became so bad that after losing his mother to cancer and his therapist to retirement he attempted (unsuccessfully) to contract HIV so that he would have a reason to kill himself. Attempting to put depression and its treatments in a cross-cultural context, he draws effectively and skillfully on medical studies, historical and sociological literature, and anecdotal evidence, analyzing studies of depression in Cambodia under the Khmer Rouge, Inuit life in Greenland, the use of electroshock therapy and the connections between depression and suicide in the U.S. and other cultures. In examining depression as a cultural phenomenon, he cites many literary melancholics Virginia Woolf, Samuel Beckett, John Milton, Shakespeare, John Keats, and George Eliot as well as such thinkers as Freud and Hegel, to map out his "atlas" of the condition. Smart, empathetic, and exhibiting a wide and resonant knowledge of the topic, Solomon has provided an enlightening and sobering window onto both the medical and imaginative worlds of depression. (June)Forecast: Excerpted last year in the New Yorker, this pathbreaking work is bound to attract major review attention and media, boosted by a seven-city tour.

Living Proof: A Medical Mutiny by Michael Gearin-Tosch (2002)

2008-12-30T04:37:00.004-05:00

"I was told I had cancer and that I must expect to die soon. Almost eight years later I still do my job and enjoy life. I have not had conventional treatment. Did my cancer simply disappear? Did I do nothing? Far from it. A number of things happened, some by accident, most by design."

Michael Gearin-Tosh is diagnosed with cancer at the age of fifty-four. The doctors urge immediate treatment. He refuses. Intuitively, not on the basis of reason. But as the days pass, Gearin-Tosh falls back on his habits as a scholar of literature. He begins to probe the experts' words and the meaning behind medical phrases. He tries to relate what each doctor says -- and does not say -- to the doctor's own temperament. And the more questions he asks, the more adamant his refusal to be hurried to treatment.

The delay is a high-risk gamble. He listens to much advice, especially that of three women friends, each with a different point of view, one a doctor. They challenge him. They challenge medical advice. They challenge one another. On no occasion do they speak with one voice. He also turns to unexpected guides within his own memory and in the authors he loves, from Shakespeare and Chekhov to Jean Renoir, Arthur Miller, and Vaclav Havel.

In the end, he chooses not to have chemotherapy but to combat his cancer largely through nutrition, vitamin supplements, an ancient Chinese breathing exercise with imaginative visualizations, and acupuncture.

No how-to book or prescriptive health guide, "Living Proof" is a celebration of human existence and friendship, a story of how a man steers through conflicting advice, between depression and seemingly inescapable rationalism, between the medicine he rejects and the doctors he honors.

Clear-eyed and unflinching, Gearin-Tosh even includes his own medical history, "The Case of the .005% Survivor"; explores general questions about cancer; and examines the role of individual temperament on medical attitudes, the choice of treatments, and, of course, survival.

This title can be purchased from Abebooks.com starting at one dollar plus shipping.

Life in the Balance by Thomas Graboys (2008)

2008-12-30T04:28:00.005-05:00

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.

Heartsounds by Martha Lear (1980)

2008-12-30T04:23:00.004-05:00

A moving account of a medical drama and a medical failure records the observations of surgeon Harold Lear, who, stricken by a series of coronaries, endured open-heart surgery and mysterious postsurgical complications before dying. Poignant and moving. A heard book to read, but an important one.

Abebooks.com carries this title starting at one dollar plus shipping.

Death Be Not Proud by John Gunther (1948)

2008-12-30T04:15:00.004-05:00

One of the first modern pathographies. “Johnny Gunther was only seventeen years old when he died of a brain tumor. During the months of his illness, everyone near him was unforgettably impressed by his level-headed courage, his wit and quiet friendliness, and, above all, his unfaltering patience through times of despair. This deeply moving book is a father's memoir of a brave, intelligent, and spirited boy."
DJE: This is a classic that is well worth reading.

Available at Abebooks.com starting at one dollar plus shipping.

Closing the Chart by Steven Hsi (2004)

2008-12-30T04:07:00.007-05:00

Dr. Steven D. Hsi, a family physician and father of two young sons, was diagnosed in 1995 with a rare coronary disease that caused his death five years later at the age of forty-four. Throughout his ordeals as a patient, including three open-heart surgeries, Dr. Hsis outlook on the teaching and practice of medicine changed. In 1997 he began a journal intended for publication after his death. Written with the assistance of newspaper columnist Jim Belshaw and completed posthumously by Hsis widow, Beth Corbin-Hsi, Dr. Hsis writings urge his colleagues to become healers, to look at their patients as human beings with spiritual as well as physical lives.

"Every patient should read it, if only to be made aware that they are not alone with their thoughts. Every spouse of a patient should read it. . . . Every medical student and physician should read it to learn that the biology of the disease is really just a small part of the illness" ~John Saiki, M.D., Medical Oncology, University of New Mexico

"Dr. Steven Hsi asks his fellow doctors to be more than physicians. He asks them to be healers. He says that when he thinks of healers, he sees traditional medicine men, people who are integral parts of their communities. They are in touch physically and spiritually with the people they serve."~ Tony Hillerman

Here is a review I wrote a few years back: Closing the Chart Review

"Closing the Chart" can be found inexpensively at Abebooks.com

Cancer Vixen by Marisa Acocella Marchetto (2006)

2008-12-30T03:49:00.005-05:00

“What happens when a shoe-crazy, lipstick-obsessed, pasta-slurping, fashion-fanatic, madly-in-love, about-to-get married, big-city-girl cartoonist with a fabulous life finds . . . a lump in her breast?” That’s the question that sets this funny, powerful and poignant graphic memoir in motion. In vivid colour and with a taboo-breaking sense of humour, Marisa Marchetto tells the story of her 11-month, ultimately triumphant bout with breast cancer – from diagnosis to cure, and every challenging step in between. But Cancer Vixen is about more than surviving an illness. It is a portrait of one woman’s supercharged life in Manhattan, and a wonderful love story. Marisa, self-described “terminal bachelorette” meets her Prince Charming in Silvano, owner of the chic downtown trattoria Da Silvano. A month before their wedding, she receives her diagnosis. She wonders: How will he react to this news? How will my world change? Will I even survive? And . . . what about my hair? From raucous New Yorker staff lunches and the star-studded crowd at Silvano’s restaurant, to the rainbow pumps Marisa wears to chemotherapy, Cancer Vixen is a total original. Her wit and courage are an inspiration – she’s a cancer vixen, not its victim: “Cancer,” she says, “I’m going to kick your butt! And I’m going to do it in killer five-inch heels!” This is an incredible graphic novel.

Abebooks.com has Cancer Vixen available starting at one dollar plus shipping.

Autobiography of a Face by Lucy Grealy (1994)

2008-12-30T03:38:00.007-05:00

"I spent five years of my life being treated for cancer, but since then I've spent fifteen years being treated for nothing other than looking different from everyone else. It was the pain from that, from feeling ugly, that I always viewed as the great tragedy of my life. The fact that I had cancer seemed minor in comparison."

At age nine, Lucy Grealy was diagnosed with a potentially terminal cancer. When she returned to school with a third of her jaw removed, she faced the cruel taunts of classmates. In this strikingly candid memoir, Grealy tells her story of great suffering and remarkable strength without sentimentality and with considerable wit. Vividly portraying the pain of peer rejection and the guilty pleasures of wanting to be special, Grealy captures with unique insight what it is like as a child and young adult to be torn between two warring impulses: to feel that more than anything else we want to be loved for who we are, while wishing desperately and secretly to be perfect.

Available from Abebooks.com starting at one dollar plus shipping.

Ann Patchett's Truth and Beauty is a moving memoir about Patchett's friendship with Grealy that began when they were college students.

At the Will of the Body: Reflections of Illness by Arthur Frank (1991)

2008-12-30T03:23:00.005-05:00

In this deeply affecting memoir, Arthur W. Frank explores the events of illness from within: the transformation from person to patient, the pain, the wonder, and the ceremony of recovery. To illuminate what illness can teach us about life, Frank draws upon his own encounters with serious illness -- a heart attack at age thirty-nine and, a year later, a diagnosis of cancer. In poignant and clear prose, he offers brilliant insights into what happens when our bodies and emotions are pushed to extremes. Ultimately, he examines what it means to be human.

This was one of the first pathographies I read, and even to day, one of the most instructive and educational.

Frank feels that “illness is an opportunity, though a dangerous one… Critical illness offers the experience of being taken to the threshold of life, from which you can see where your life could end. From that vantage point you are both forced and allowed to think in new ways about the value of your life… Illness takes away parts of your life, but in doing so it gives you the opportunity to choose the life you will lead, as opposed to living the one you have simply accumulated over the years.”

Can be purchased from Abebooks.com starting at one dollar.

Aidan's Way by Sam Crane (2004)

2008-12-30T03:05:00.008-05:00

“Aidan's Way is an endlessly inspiring account of parental love and devotion, of the lessons of ancient eastern philosophy and of what it means, ultimately, to be human.

This life we're given comes in its own season and then follows its vanishing away. If you're at ease in your season, if you can dwell in its vanishing, joy and sorrow never touch you. This is what the ancients called getting free.

...Aidan's crisis had liberated me in a way. We had come close to death, had looked over the edge of the precipice, and then moved back. He would die at some point, perhaps young, maybe very young. He was profoundly disabled, even more so than he had been before. But his near-death had altered my vision. The length of his life or the physical particulars of his life were not as important as the mere fact of his life itself. He was following along in his own season, moving on the currents of the Way....

Sam Crane, a professor of Asian Studies, has to cope with more than he ever imagined when his son Aidan is born with severe disabilities. Turning to the Tao Te Ching and Chuang Tzu -- he comes to understand Aidan. Gradually, we become aware of Aidan's profound impact on others, including his father, his family and the larger community.”

Aidan's Way can be found at Abebooks.com

A Whole New Life: An Illness and a Healing by Reynolds Price (1994)

2008-12-30T02:37:00.011-05:00

“Reynolds Price has long been one of America's most acclaimed and accomplished men of letters. This is his most intimate story yet -- a memoir as compelling as any work of the imagination.

In 1984, a large cancer was discovered in Price's spinal cord. Here, he recounts his battle to withstand and recover from this devastating affliction. He charts the first puzzling symptoms, three surgeries, the radiation that paralyzes his lower body, the occasionally comic trials of rehab, the steady rise of pain and reliance on drugs, and his discovery of biofeedback and hypnosis. Beyond the particulars, Price illuminates larger concerns, such as the gratitude he feels toward family and friends and (some) doctors, the abundant return of his powers as a writer, and the "now appalling, now astonishing grace of God." More than the portrait of one person in crisis, A Whole New Life offers honest insight, realistic encouragement, and authentic inspiration -- and stands as one of Price's crowning achievements.”

Available at Abebooks.com starting at one dollar.