Showing 21 - 30 of 676 annotations tagged with the keyword "Illness and the Family"

The Heart

de Kerangal, Maylis

Last Updated: Apr-25-2016

Primary Category: Literature / Fiction

Genre: Novel

Summary:

The story of The Heart is a simple, linear structure.  A car accident renders a young Frenchman, Simon, brain-dead. A medical team proposes harvesting organs, and his parents, after some turmoil, agree. That’s the first half of the book, the provenance of this specific heart. The second half describes its delivery for transplantation. Administrators find recipients, one of them a woman in Paris. Simon’s heart is transported there by plane and sewn into her chest. All this in 24 hours.  
            
The narration is complex, with flashbacks, overlapping times, and literary art that is compelling. There are 28 sections to the story but without numbers or chapter headings, and these are often broken up into half a dozen shorter sections. We have an impression of stroboscopic flashes on the action, with high intensity focus. These create a mosaic that we assemble into dramatic pictures. Even major characters arrive without names, and we soon figure them out.  
 

Simon.  He’s called the donor, although he had no choice in the matter. At 19 years of age he’s trying to find a path in life.  A Maori tattoo is a symbol for that search. He has a girlfriend, Juliette. He fades away as a character (except in others’ memories) and his heart takes center stage.  

Marianne and Sean, Simon’s parents.  Her emotions, as we would expect, range widely, especially during discussion of whether Simon’s organs can be transplanted. Father Sean has a Polynesian origin and cultural heritage.


Pierre Révol, Thomas Rémige, and Cordélia Owl are respectively the ICU physician, nurse, and the transplant coordinator. These are vividly drawn, with unusual qualities. Skilled professionals, they are the team the supplies the heart.  

Marthe Carrare, Claire Méjan, and Virgilio Breva are a national administrator, the recipient, and a surgeon. Described in memorable language, they are the receiving team.              

The characters’ names give hints of de Kerangal’s range. S
ince the 1789 Revolution Marianne has been a well-known French national symbol for common people and democracy, but Virgilio Breva is from Italy and Cordélia (recalling King Lear) Owl (as in wise?) has a grandmother from Bristol, England. We learn of personal habits regarding tobacco, peyote, sex, and singing. Medicine is part of a larger world of people of many sorts.              

Even minor characters, such as Simon’s girlfriend Juliette and other medical personnel are touching and memorable.
             

These characters animate the story with their passion, mystery, even heroism. While we don’t know the final outcome of the implanted heart, the text shows the professionalism of the medical team, the French national system that evidently works, sensitive care of patients and families, and in the last pages, rituals of affirmation for medical art and for patients.
             

There is richness in de Kerangal’s style. At times it is direct, reflecting the thoughts of characters. At times it is ornate, even baroque. She uses many images and metaphors, often with large, epic qualities. A very long sentence about the over-wrought parents describes them as “alone in the world, and exhaustion breaks over them like a tidal wave” (p. 141).  The style uses many similes, often with dramatic and unexpected comparisons. There are references to geology, astronomy, even American TV hospital drama. The style is at times lyric…we might say “operatic.”  One page about Cordélia is very, very funny.
        
  
In a different tone, the details of medicine, law, and ethics are carefully presented, and visual imagery puts us in the hospital rooms, the OR, and crowded streets around a soccer game. Throughout it appears that translator Sam Taylor has done an admirable job. 
             

The text invites us to consider large visions of wholeness. All the major characters seek some comprehensive unity to their lives, and they avoid orthodoxies such as religion, patriotism, and economic gain. Sean has his Polynesian heritage and boat-building passion, which he has shared with Simon. Cordélia, at 25, is an excellent nurse, wise beyond her years in some ways, but is as dazzled by a man as any teenaged girl. Nurse Rémige has his master’s in philosophy, loves the song of rare birds, and is, himself, a serious singer.  

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Attending Others

Volck, Brian

Last Updated: Apr-11-2016
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

This memoir of a life in medicine takes the writer from St. Louis to a Navajo reservation to Central America to the east coast and from urban hospitals to ill-equipped rural clinics. It offers a wide range of reflections on encounters with patients that widen and deepen his sense of calling and  understanding of what it means to do healing work.  He learns to listen to tribal elders, to what children communicate without words, to worried parents, and to his own intuition while calling on all the skills he acquired in a rigorous medical education.  Always drawn to writing, Volck takes his writing work (and play) as seriously as his medical practice, and muses on the role of writing in the medical life as he goes along.

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When Breath Becomes Air

Kalanithi, Paul

Last Updated: Feb-18-2016
Annotated by:
Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Paul Kalanithi, diagnosed with stage IV metastatic lung cancer when he was a neurosurgery resident at Stanford University, was faced with a decision. Should he truncate his career in neurosurgery in order to become a writer - a career he had always envisioned for himself after completing a couple of decades of neurosurgery practice? Married to Lucy Kalanithi, an internist he had met in medical school, Paul’s career and future had looked bright and promising. But as he entered his final year of a seven-year residency, symptoms of excruciating back pain and significant weight loss began. Garbed in a hospital gown, he examines his own CT scan – this is how we meet Paul at the beginning of the Prologue. He then writes of the relatively brief period of misdiagnosis prior to the CT scan. With the initial negative plain x-rays, he is started on nonsteroidal anti-inflammatory drugs. But breakthrough pain and continued weight loss leads to the CT. Paul the physician understands the death sentence the images portend; Paul the patient is just beginning his journey. The diagnosis and treatment cause him to reassess his decisions about his life, to decide to father a child even though he knows he will never see the child grow up, and ultimately to write a memoir, essentially for his daughter.

Paul had graduated from Stanford with undergraduate and master’s degrees which reflected his dual love of literature and science. He combined these in a second master’s degree from Cambridge University in the history and philosophy of science and medicine before attending Yale for his medical degree. He and his wife return to California for residencies. The book is largely a blend of his dual interests: a deep and abiding love and faith in literature and how words can reveal truths, and a passion for the practice and science of neurosurgery. The rupture of fatal illness into his life interrupts his dogged trajectory towards an academic medical career, and, like all ruptures, confounds expectations and reorients priorities.

The book has five parts: a foreword by physician-writer Abraham Verghese, who notes the stunning prose Paul produced for an initial article in The New York Times and exhorts the reader to “Listen to Paul” (page xix); a brief prologue; two parts by Paul Kalanithi (Part I: In Perfect Health I Begin, and Part II: Cease Not till Death); and a stunning, heart-breaking epilogue by Lucy Kalanithi. In the epilogue, written with as many literary references and allusions as her husband’s writing includes, Lucy provides the reader with a gentle and loving portrait of her husband in his final days, reaffirms his joy in their daughter Cady, and chronicles how she kept her promise to her dying husband to shepherd his manuscript into print.

The bulk of the book is memoir – a childhood in Arizona and an aversion to pursuing a life in medicine due to his hard-working cardiologist-father, experiences at Stanford which eventually led him to reverse his decision to avoid a medical career, the stages of his medical career and caring for patients, and his devastating cancer. Though initially responsive to treatment—and indeed, the treatment enables him to complete his residency and decide to father a child with Lucy—the cancer is, as prognosticated from the diagnosis, fatal.

What makes this memoir so much more than an exercise in memory and a tribute to the herculean effort to write while sapped by cancer and its treatment, are the philosophical turns, the clear love of words and literature, and the poignancy of the writing. He begins reading fiction and nonfiction again: “I was searching for a vocabulary with which to make sense of death, to find a way to begin defining myself and inching forward again. The privilege of direct experience had led me away from literary and academic work, yet now I felt that to understand my own direct experiences, I would have to translate them back into language…I needed words to go forward.” (pp 148-9) Paul’s writing ends with what is arguably some of the most poetic prose ever written. He concludes by speaking directly to his infant daughter: “When you come to one of the many moments in life where you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more but rests, satisfied. In this time, right now, that is an enormous thing.” (p. 199)

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Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Kozol tells a multilayered story about himself and his father, a distinguished physician who becomes increasingly demented by Alzheimer’s disease, starting at age 88. A neurologist, Dr. Harry Kozol is able to diagnose with great specificity his own disease.     
          
Son Kozol describes his father’s initial symptoms and the slow decline, a direction that is sadly and fatefully, clear. The son goes on walks with him, describes their conversations, arranges for paid companions, and puzzles about what must be “a life beneath the life” of his progressively inarticulate father.
           

Over the 14 years of this illness, there are some medical mishaps—including problems in continuity of care—depletion of the family’s money, and Jonathan’s hesitation to use a DNR (Do Not Resuscitate) order for his father or for his aging mother. He writes of his doubts, uncertainties, and mixed emotions. When his father is actively dying, Kozol dawdles elsewhere with lists and papers “obsessively.” He understands this, in retrospect, as denial. Nevertheless he arrives at the hospital and places his ear on his father’s chest, hearing breaths come slower and slower until death. Dr. Kozol dies in 2008 at the age of 102.
           

Alternating with this story are long passages about Dr. Kozol’s professional life, including his work with Eugene O’Neill and family, also Patty Hearst and Albert DeSalvo (“The Boston Strangler”). For the latter two, he is an expert witness in court cases. These passages illustrate his many skills, tenacity, and ideals.

A 25-page Epilogue written a half a dozen years later casts a different light on the father-son relationship. While the bulk of the book shows a loving, respectful relationship, the Epilogue describes tensions and disagreements between the two from Jonathan’s childhood to later years. The father criticizes what he perceives as failures, lack of ambition, poor choices, and the like. Kozol describes his own illustrious career, often in directions his father disapproves. In later years, however, Kozol accepts some of his father’s advice and understands their status more as equals. In another seven years, however, Dr. Kozol’s mind starts its difficult path, and the son becomes the caregiver to the father.  

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Side Effects May Vary

Murphy, Julie

Last Updated: Jan-07-2016
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

At 16, Alice is diagnosed with leukemia, and is given a dire prognosis.  Assuming she has months to live, she undergoes chemotherapy with the support of her lifelong friend, Harvey, whose frank and deepening love she is uncertain about returning.  On days when she has enough energy and the nausea abates, she works on a "bucket list" with Harvey's sometimes reluctant help, since the list includes revenge on two classmates who have hurt and humiliated her.  When, months into treatment, she goes into unexpected full remission, Alice has to come to terms with the consequences of some of her revenge strategies and reassess the depth of a relationship with Harvey that may last far longer than she thought she had.  Given an opportunity to choose life on new terms, she considers those new terms in a more adult way, chastened, focused, and grateful for a chance to make new choices.

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Skin for Ricky

Schiedermayer, David

Last Updated: Dec-10-2015
Annotated by:
Nixon, Lois LaCivita

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

The physician-narrator is looking in on a 30 year old patient named Ricky. Readers immediately learn that the patient has cerebral palsy: his ear mashed flat, his neck contorted into a tight C, almost quadriplegic. These first stanza clinical observations are indisputable. The narrator then shifts from the medical facts to more subjective thoughts ranging from Ricky’s previous treatment responses and medications to Ricky’s adult heterosexual response to the proximity of a female, and finally to the narrator’s own wishes for this patient. Ricky’s parents, the narrator notes, have similarly but uncomfortably witnessed their son’s ogling response to a pretty nurse or doctor or a provocative adult television image. The parents’ response, he notes, to these observations has been to redirect Ricky’s focus by switching the channel to Nickelodeon, a program geared towards children.  Not unlike situations in several writings by William Carlos Williams, this physician has moved from objective medical information to his own interior thoughts about Ricky’s circumstances and confinement.  Rather than sticking with the facts associated with the patient’s medical condition, he wonders, imagines, and expresses in this poem seemingly un-doctorly thoughts. 

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Fracture

Miranda, Megan

Last Updated: Dec-08-2015
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel for Young Adults

Summary:

 After eleven minutes underwater at near-freezing temperature, Delaney Maxwell, who appeared dead upon rescue, is revived.  Unlikely as her survival seems, the return of apparently normal brain function seems even more unlikely, yet after a few days she is allowed to go home with medications and resume a near-normal life. But after-effects of her trauma linger, the most dramatic of which is that she develops a sixth sense about impending death. She hides this recurrent sensation from her parents, and from her best friend, Decker, who rescued her, but finds that she shares the experience with a hospital aide who, like her, suffered a coma after a car accident that killed his family members. Like her, he senses death in others. Gradually Delaney realizes that “normal” isn’t a place she’s likely to return to, and that Troy, the aide whose life has been a kind of “hell” since his own trauma, is even further from normal than she. Troy seems to feel that it is his mission to help hasten death for those who are dying, to prevent prolonged suffering.  The story follows her efforts to stop him, and to communicate with close friends, especially Decker, in spite of the secret she carries about her own altered awareness. When her efforts to save a friend who is dying of a seizure fail, Delaney faces another moment of crisis, compounded by Troy’s own suicidal desire to end his own suffering and hers with it. In the midst of these new traumas a clarity she has lost about what it means to choose life returns to her, and with it the possibility of a loving openness with parents and friends about the mysteries of her own brain and heart.

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The Not-Dead and the Saved

Clanchy, Kate

Last Updated: Nov-23-2015
Annotated by:
Miksanek, Tony

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

Two individuals share a struggle that is grueling, depressing, and whose outcome is probably preordained. The Mother (divorced, constantly tired, and fearful of sickness) is "not a good choice for the parent of a chronic invalid" (p. 168). The Son (smallish, clever, and born with some kind of tumor) has previously had an organ transplant (most likely kidney).

Their trek through the realm of sickness unfurls in seven scenes - all hospital wards and finally Hospice. First, the Son is an adolescent in a pediatric ward where the Machine (presumably renal dialysis) prevents his death. There he spots a baby that he dubs a "Not-Dead." She has multiple birth defects due to a chromosomal abnormality and is kept alive by technology. He intuits that while not dead, the baby is not "properly alive" either. He muses about his own status. His mother is always bedside, propping up his spirits.

Next he is in the ICU and then transferred to a medical floor. He receives a blood transfusion after disconnecting the Machine in a likely suicide attempt. Sometime later, he is back in the pediatric ward after receiving an organ transplant. The Son gets admitted to the Cardio-Respiratory unit for a severe infection. In and out of hospitals, he enrolls in college but quits. After getting married, he joins a commune of survivors of medical illnesses known as "The Saved." This collective lives on a farm and members avoid any contact with family.

The Son's health further deteriorates. He is hospitalized in terminal condition. By this time, he has his own child, a 14-month-old boy named Jaybird. In the oncology ward, doctors diagnose three tumors in the Son's brain but he refuses any treatment (surgery, radiation, or chemotherapy). He is moved to Hospice. His absent Father comes to visit and comfort him. When the Son dies, it is the Mother who is alone with him. The Son's wife, Father, Jaybird, and members of The Saved commune are all asleep in the Day Room. Only after the Son dies are the names of the Mother and the Son revealed: Julia and Jonathon.

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Summary:

A mother (termed Mother in the story) discovers a blood clot in her young son's diaper and wonders "so what is this thing, startling against the white diaper, like a tiny mouse heart packed in snow?" This discovery leads to a diagnosis of Wilms' tumor--a childhood malignancy of the kidney, and surgery to remove the diseased kidney.The parents are thrust into a new world--the world of pediatric oncology ("peed onk") and meet the Surgeon, the Oncologist, and the other anxious parents waiting in the Tiny Tim Lounge of the pediatric ward. Everyone is named by their relationship to the Mother or by their profession--Baby, Husband, Anesthesiologist.The reader is privy to the inner thoughts of the Mother--her anger, denial, protective instincts and dark ironic vision. The Mother is also a writer and advised to take notes of this odyssey in case they need money to pay the medical costs. She feels alien to the culture of the pediatric ward--only her artsy friends understand her hell. Notes one (Green Hair) "Everyone's so friendly here. Is there someone in this place who isn't doing all this airy, scripted optimism--or are people like that the only people here?"When the Mother is given the option of no post-operative chemotherapy for Baby, the Mother grabs the chance to leave the hospital, clutching Baby, and says "I never want to see any of these people again." The piece ends on the rhetorical and ironic question--where's the money for these notes, for the story?

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Next To Normal

Kitt, Tom; Yorkey, Brian

Last Updated: Nov-18-2015
Annotated by:
Glass, Guy

Primary Category: Literature / Plays

Genre: Play

Summary:

Next to Normal is a musical, composed in a rock idiom.  

Meet the Goodmans, (father Dan, mother Diana, daughter Natalie) who on the surface resemble a “perfect loving family” like any one of millions.  However, from the outset we see that they are, in fact, a hair’s breadth from collapse:  Diana’s long-term struggle with bipolar disorder leaves her suffering uncontrollable mood swings.  Her illness fuels the chronic tension in her relationships with husband and daughter.  In addition, we learn that a son (Gabe), whom we initially believe to be an active family member, actually died years ago and his appearances represent Diana’s hallucination. 

As the show begins, Diana is undergoing a hypomanic episode that is resistant to treatment by her psychopharmacologist.  Discouraged by side effects and egged on by her phantom son, Diana flushes her pills down the toilet.  As she deteriorates, she visits a new psychiatrist who agrees at first to treat her without medication.  As she begins in psychotherapy, for the first time, to accept the loss of her son, she descends to a new clinical low.  At the close of the first act, after making a suicide attempt, she is hospitalized and agrees to be treated with ECT.   
 

By Act II, the ECT has effected great clinical improvement, with stabilization of Diana’s mood and no further hallucinations.  All this, however, has come at the expense of her memory.  As it returns, she becomes aware that what she most needs to remember, and process, are her feelings about losing a child.  In fact, we learn that she was kept from expressing them at the time because of concerns she might decompensate.  She struggles to make sense of all of this while remaining stable.  When she confronts Dan about Gabe, it is he who appears unable to discuss their loss.  She suddenly becomes aware that Dan has been enabling her in an unhealthy way.  She reconciles with her daughter, but realizes that in order to move forward she needs to get out of her dysfunctional marriage.  However, the door is left open on this relationship, for at the recommendation of her psychiatrist Dan enters psychotherapy.
 

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