Wednesday, November 4, 2009
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.
Thursday, October 1, 2009
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
This book is of value to anyone who has lost a love one suddenly and unexpectedly.
Monday, September 28, 2009
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.
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
Saturday, September 12, 2009
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.
Monday, September 7, 2009
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.
Friday, September 4, 2009
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.
Tuesday, September 1, 2009
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"
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.
Wednesday, August 26, 2009
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?"
Sunday, August 23, 2009
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.
Friday, August 21, 2009
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
Friday, July 17, 2009
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.
Saturday, July 11, 2009
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.
Sunday, July 5, 2009
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.
Tuesday, June 23, 2009
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.)
Sunday, June 14, 2009
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.
Saturday, June 6, 2009
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.
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.
NY Times Review.
Available in book form, CD and cassette tapes (latter two read by the author) .
Tuesday, June 2, 2009
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.
Saturday, May 23, 2009
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.
Sunday, May 17, 2009
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, 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
Saturday, May 16, 2009
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.
Wednesday, May 13, 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.
Tuesday, May 12, 2009
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
Monday, May 11, 2009
Published by Down Home Press, 2003
ISBN 1878086952, 9781878086952
"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.
Sunday, April 26, 2009
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
Friday, April 24, 2009
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
Sunday, April 12, 2009
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
Sunday, March 29, 2009
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.
Wednesday, March 11, 2009
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.
Saturday, February 28, 2009
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.
Thursday, February 26, 2009
Christopher Nolan died at age 43 on February 20, 2009. NY Times Obit. He apparently asphixiated on food.
Sunday, February 22, 2009
This book compliments Elyn Saks, "The Center Cannot Hold."
Sunday, February 15, 2009
This is also a DVD.
Wednesday, February 11, 2009
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.
Monday, February 2, 2009
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.
Wednesday, January 28, 2009
January 25, 2013. Elen Saks had an Op-Ed piece in the NY Times: "Successful and Schizophrenic" It is well worth reading.
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.
Saturday, January 24, 2009
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.
Saturday, January 10, 2009
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.
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
Wednesday, January 7, 2009
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.
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.
Thursday, January 1, 2009
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.
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.