Summary:

On July 5, 1998, physics Professor Alan Cromer suffered a heart attack on a plane, and survived after almost an hour of resuscitation efforts, but sustained brain injury from lack of oxygen.  In this chronicle of caregiving, his wife, a psychiatric nurse by training, gives a very personal, detailed account of the radical adaptations his disability required of both of them.  Her story includes reflection on his and her own emotional adjustments to loss of parity in communication and awareness, practical adjustments to physical limitations, and social adjustments to family, friends and professional colleagues.

Arduously, over time, Alan regained some ability to read and speak--indeed, he spoke to groups with Janet about their life together during the peak of his rehabilitation.  But the road to even partial recovery was bumpy, and the writer fully acknowledges the pain, grief, irritation, and deep frustrations that intersected moments of authentic pleasure, discovery, and mutual kindness.  Professor Cromer died September 3, 2005.

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In 1951 when Henrietta Lacks was dying of cancer in the colored ward of Johns Hopkins, cancer cells taken from her without her knowledge "became the first immortal human cells grown in a laboratory"(4).  Known as HeLa cells, they are still reproducing today and are used world wide in research for cancer, cloning, genetics, Parkinsons, and many technologies. Henrietta's family did not know she was the source of these immortal cells until scientists began testing the family members too.  Poor and black, they were very angry to find the white establishment had made fortunes using HeLa cells while the family got nothing for it and couldn't even get good health care. In her thorough and careful investigation, Rebecca Skloot interviewed the Lacks family; scientists, doctors, and others who worked with HeLa cells; historians; journalists; ethicists. This book traces the complex stages of her search for the truth about what happened to Henrietta Lacks, her HeLa cells, and her family.

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As explained in the succinct yet thorough introduction by co-editor Kimberly Myers, an international conference on the topic of "The Patient" was convened at Bucknell University in Pennsylvania in 2006. This collection of essays, which range from personal experience to scholarly literary critique, results from the conference presentations.
 
Of the ten essays, four concern personal or familial experience of illness. These four cover a vast range: literature and disability specialist Kristin Lindgren describes her story of the elusive diagnosis of chronic fatigue syndrome and her coping skills; medical humanities and medical ethics expert Carol Schilling offers a poignant narrative of her experience as a mother of a previously healthy, athletic son who suffers a cervical spine injury from a skiing accident; Gayle Whittier places the story of her daughter's disability amongst a trio of nonfictional and fictional narratives of disability and illness; and renowned poet Tess Gallagher explores her relationship with and caring of her mother who has Alzheimer's disease. These essays, written as they are by women steeped in literature and writing, are not merely chronicles; rather they are infused with commentary on story and the meaning of life as story, journey and relationship.
 
The other six essays are likewise diverse and range from cultural/political studies from the Navajo to the Irish (which includes literary analysis of works by poets Eavan Boland and Nuala Ní Dhomhnaill), to insightful critiques of literary works such as  Hjalmar Soderberg 's Doctor Glas, Lauren Slater's Lying: A Metaphorical Memoir, Brian Clark's Whose Life Is It Anyway?, Alejandros Amenabar's film The Sea Inside (Mar Adentro), and George (Marian Evans) Eliot's Janet's Repentance.

Consistent with the nature of medical humanities, the essays cross boundaries. For example, Whittier weaves her experiences as a mother of a disabled child with reflections on embodiment and literary critique. Gallagher compares the notions of time in poem-making with the necessity to live in the moment when caring for a loved one with Alzheimer's. She notes: "Of the written arts, poetry is most responsive to the moment and so coincides with the condensed time frame of those with Alzheimer's - which oscillates between the distant past and the present moment." (p. 71) Schilling tenderly writes of her family (for an illness strikes not just the patient): "We live the best lives we can, folding each of our stories into one another's." (p. 40) Diedrich explores not just the (at times infuriating) play with deceit in Lying, but also examines the ways in which patients lie and medical language obfuscates illness. She further explores, with great insight, expectations: of literary reviewers, patients and physicians.

 

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At first the title seems to relate to the main character's lay-off or departure from his job as a professional cellist in a bankrupt and dissolving orchestra.  As the story continues, the title's unpredictable meaning becomes clear. 

Not surprisingly, jobs for cellists are difficult to find. Shattered by his desperate situation, Daigo, the central character (Masahiro Motoki), and his wife Mika (Ryoko Hirosue), return from the city to his hometown where they begin to experience stresses and discomforts associated with joblessness.  After a long period of searching, Daigo responds to an ad for someone to work in departures. Believing that he is applying for a travel advisor job, he discovers that the position involves the ceremonial art of caring for the bodies of those who have recently died--or departed.  He learns about encoffination, the elaborate ritual of washing and dressing the body before placement in the casket prior to burial, from Sasaski (Tsutomu Yamazaki), his new employer. 

Mika is so appalled and ashamed when she learns about his new career, she decides to leave him.  In spite of his own unhappiness, Daigo continues on.  With the remarkably skilled Sasaski at his side, Daigo develops great sensitivity in the ritualized care that is provided before family mourners.  Each of the caring situations becomes for Daigo, a rich story about the textures of human life.  He seeks solace for himself and another measure of dignity for the departed by playing beautiful music on his cello.  Most viewers, including the eventually reconciled Mika, are impressed by the beauty of this probably unfamiliar Japanese ceremony.

Another moving dimension of Daigo's personal story occurs when information is revealed about the father who had abandoned him when he was a child.  Circumstances intervene so that Daigo's new skills and sensitivities contribute to an understanding of that distant past and an opportunity to provide his father with a dignified departure ceremony.    

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This suggestively titled collection of poems provides a lyric record of a physician’s way of seeing.  The situations to which the poems bear witness are not only medical, though many are.  Some are cityscapes into which are woven surprisingly astute observations of homeless people or hitchhikers or ducks in the park.  Some explore the geography of a body where memories are held in “neuron chains.”  Some articulate bits of personal history from the point of view of a woman who has spent years in medicine, caring for the elderly, seeing bodies with the double vision of a clinician and a person whose spirituality clearly informs all she sees.

Titles like “ER Alphabet of Hurt” or “Looking for God On the Radio” or “Hippocrates Voyeur” or simply “Scars” may give some sense of the range of focus.  Her vision and voice are strongly local; those who know Marin County, north of San Francisco, will recognize the places that become the poet’s personal geography.  Those who don’t will still see in these poems a sensibility shaped and refined by the knowledge that comes from deep habitation.  

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Letters to a stranger is a slim volume of poems by Thomas James ((1946 - 1974) posthumously collected and published in 2008 by an admiring reader/ critic, Lucy Brock-Broido. James died by suicide in 1974.

There are 54 poems in all. Forty-one of them were first published in 1973 as James's only published book of verse, Letters to a Stranger. Ms Brock-Broido has collected 13 more from various small magazines. Most have a faint formalistic ring to them with rhymed triplets (a-x-a) predominating.   Preceding the poems is an introduction by Ms Brock-Broido, an introduction that can only be called unusually confessional. (In his characteristically succinct diction, series editor Mark Doty calls it "a love letter, a biography and exorcism all at once".) For subjects, the bulk of the poems have, as we call a type of educational conference in medicine, morbidity and mortality. Indeed, the book might perhaps have been more appropriately entitled "Intimations of morbidity and mortality". Many of the poems are graphic.

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Holding Our Own: Embracing the End of Life is a documentary film that shows aging and dying as anything but morbid, and death as the final healing in the hospice way. Art and music are combined as a way to bring people into a subject that they'd rather resist.

The film begins with an art opening in New York City and with the commentaries of curator and others as they view Deidre Scherer's large fabric and thread paintings (see annotation of "Surrounded by Family and Friends")--of people at the last moments of their lives. The artist has captured for us, even in the midst of suffering, genuine moments of tenderness.

An interview with palliative care physician Ira Byock guides the conversation, presenting a most refreshing doctor's perspective. The commentaries of hospice personnel, artist, and members of the Hallowell singing group punctuate the profoundly intimate scenes, filmed in institutional settings and in homes. The singers, who sing to the dying patients, see beyond their own fears; they recognize and want to honor dying persons for who they are: "This is not about singing it right for an audience...its about being totally present for the people you're singing for...and wanting it to be a gift." They model the magic of human connection called by Byock "the ground substance of therapeutics" The healing is mutual: "I can feel sad, cry, I can feel a heavy heart...but it's not depressing....It's a wonder...you can feel love, joy, sorrow, but so alive.... you feel the blessing of your own life."

Two additional segments, "More about Deidre Scherer," and "More about the Hallowell Chorus, and a concise study guide are offered with the DVD.

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George Washington Crosby is dying from kidney failure. The eighty-year-old man has a crumbling body - Parkinson's disease, cancer, diabetes, and previous heart attacks - and a murky mind. He is hallucinating and his memories are disordered. George occupies a hospital bed in the living room of a house that he constructed himself. His family keeps him company as they await his imminent demise.

Some of George's thoughts revolve around his passion for clocks and his skill in repairing them. Most of his memories center on his father, Howard Aaron Crosby. About seventy years earlier, Howard owned a wooden wagon and a horse and scratched out a living as a tinker and a peddler of household goods. Howard's father had been a Methodist minister who exhibited worsening signs of mental illness. The man was eventually escorted out of his home. Only a young boy at the time, Howard would never see his father again.

Howard suffered from frequent and violent epileptic seizures. His wife and the family doctor thought Howard should be admitted to the Eastern Maine State Hospital, an institution housing feebleminded and insane individuals. Howard had a different opinion. One evening, he left his wife and four children and headed to Philadelphia. He took a new name and a new wife. He found work in a grocery store. The frequency of his seizures decreased dramatically.

George's final memory before death is a vivid one. He recalls a Christmas dinner in 1953. Someone is at the door. It is a surprise (and brief) visit by Howard to George's house. It is the first time that he has seen his father since George was twelve.

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Patrick Clary's Dying for Beginners is a collection of vibrant poems about living (as well as dying); about family, friends, music, loss, war and love. The book's title is evocative of the countercultural insight that dying is an essential part of living.  We only become fully human by coming to grips with our own mortality.  This engagement with mortality emerges from love and humor, as well as from suffering and loss.  Clary's poems speak to what he has discovered about himself, as a beginner to his fellow beginners.

The poet's route to discovery traverses Death Valley, where, during a spiritual retreat and vision quest, he has this epiphany: "Suddenly, I find all my wounds are turning into blessings" (p. 1). This inversion of categories is not an exotic, one-off event, but becomes a new way of looking at the world, a perspective in which life events, carefully observed and described, blossom with deeper meanings that can only be expressed by metaphor or paradox. For example, in "Days I Don't Remember," Clary reflects, "And all my roads are turning into rivers" (p. 27). Or, in "Meditation on the Pays d'Oc," he observes, "Instead of dying, I cough up a butterfly, watch it / dry its wings in the sun..." (p. 74). Or the essential quietism of "That silence moving through our lives was me" (p. 33).

The poet had his first lessons in dying when he worked as a medic during the Vietnam War, In "Orientation at Bien Hoa," he discovers, "Yes, gentlemen / This little war here / Exists only / For one reason: / To give you all the pleasure / You can handle" (p. 10).  He also learns how easy it is to kill with an M 16 rifle, which can "Put eighteen holes in / Whatever you point it at / Inside of two seconds" (p. 11). Meanwhile, the human tragedy of Vietnam takes place all around him.  

Clary reflects on the limits of his calling in "Three Variations", where he observes his own hands, "professionally / Tender on demand, but still uneasy / At your easy tenderness" (p. 35). The words "professionally tender on demand" evoke his work in palliative medicine, although the same words could-and should-apply to medical practice in general.  But Clary recognizes that the human capacity for compassion is not inexhaustible. There will always be a tension between the work that needs to be done ("another pair of hands in the emergency room," p. 63) and our limited reserves of kindness and empathy.

The book ends with a humorous and moving short prose narrative ("Origins of the Earwax Patrol," pp. 83-86) about caring for terminally ill patients.

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In 2008, editor and physician Paul Gross launched a new online publication, "Pulse--voices from the heart of medicine" (published by the Department of Family and Social Medicine, Albert Einstein College of Medicine and Montefiore Medical Center). This anthology contains every poem and first-person narrative published during Pulse's first year, arranged in five sections corresponding to publication date and not to theme: Spring, Summer, Autumn, Winter, and Spring.  Paul Gross, in his introduction, states "After more than a decade of practice as a family doctor, I came to appreciate that the science I'd learned in medical school, though powerful and useful, was also incomplete . . . . it contained much truth about illness and healing, but not the whole truth" (xvii).  Like many other caregivers, Gross discovered "that writing and sharing my healthcare stories with others was therapeutic" (xviii).  He looked to "Sun Magazine" as an example of how first person narratives, both prose and poems, could turn "hurts and triumphs into something potentially beautiful, funny or moving" (xviii). 

The poems and prose that arrive every Friday online to Pulse's thousands of subscribers (and the selections in this anthology) are carefully screened by the editors according to these guidelines: the stories have to be first-person, and they have to be true, recounting the writer's own experience.  Submissions are accepted from any person involved in healthcare.  The language used must be "clear, simple language.  No medical jargon. No arcane literary devices" (xx).  Gross and his editors decided that Pulse would not be a medical journal nor a literary magazine--its purpose fell outside the perimeters of both genres--and so Pulse, and this anthology, offers work that is, in a refreshing and honest way, different from the slick or more polished poetry and prose that might be found elsewhere.

In reading this anthology from cover to cover, and so from season to season, I found that the poems and prose seemed to fall into several categories: Personal musings, in which authors relate healthcare experiences that engender intimate and revealing narratives about their own lives--among the best of these are "Well Baby Check," p.3; "Finding Innisfree," p. 31; "First Patient," p. 39; "Losing Tyrek," p. 45; "Carmen's Story," p. 62; and "Chemo? No Thanks," p. 106.  Other pieces are commentaries on the other side of healthcare, the one that cries out for reform and affects both patients and caregivers.  Among the best of these are "Redesigning the Practice of Medicine," p. 9; "A Brush with the Beast," p. 22; "Rx," p. 60; "Halloween Horrors," p. 69; and "Brain Cutting," p. 136.

Other pieces are humorous ("Aunt Helen Sees a Ghost," p. 6) or political ("My War Story," p. 11), and many poems and prose pieces speak of patient encounters or about being a patient, some more anecdotal, relating a specific incident that affected the author ("Once," p. 41) and others multi-layered, some relating medical student or intern experiences ("Jeannie," p. 48; "A View from Nepal," p. 87; "Ripped from the Headlights," p. 90; "Snowscape," p. 97; "First Night Call," p. 100; and "Wounded Messenger," p. 114.)  The "category" I found most interesting and most unique are the selections I will call "confessions."  These writings--demonstrating openess and bravery on the part of the authors--tell of regrets, mistakes, sorrows, wrong calls and other mishaps that occur, daily, in the practice of healthcare.  In these, the most human face of caregiving is revealed.  Although most of the pieces in this anthology contain elements of "confession," the most specifically revealing include "Mothers and Meaning," p. 14; "Physician's Exasperation," p. 44; "Confidential," p. 53; "My Patient, My Friend," p. 73; and "Apologies," p. 104.

Editor's note: Coincidentally, a recent relevant paper on confessional writing by physicians expounds further on this topic:"Bless Me Reader for I Have Sinned: physicians and confessional writing" by Delese Wear and Therese Jones (Perspectives in Biology and Medicine, Vo. 53, No.2, Spring 2010, pp. 215-30).

 

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