Summary:

Mallory Smith died of complications following a double-lung transplant for cystic fibrosis (CF). She was twenty-five years old and kept an extensive journal on her computer for 10 years. Salt in My Soul: An Unfinished Life is her memoir, edited by her mother, Diane Shader Smith, from the 2,500 pages of notes, observations and reflections which Mallory Smith wrote. The title refers to the intimate relationship of salt imbalance in cystic fibrosis, and the fact that Mallory felt her most well while swimming in the sea. Diagnosed at age three, she spent much of her days and nights treating the disease with medication, nutrition, chest percussive treatments, breathing treatments, adequate sleep, and aggressive treatment of infections. Unfortunately, while still a child her lungs were colonized with B. cepacia, a resistant bacteria ‘superbug’ which makes transplantation highly risky and hence leads to most centers to not accept CF patients onto their wait lists. Ultimately, University of Pittsburgh does accept Mallory as a transplant candidate, although her health insurance puts up every road block possible to her receiving care. 

Mallory Smith was extraordinarily accomplished – she graduated from Stanford University Phi Beta Kappa, and became an editor and freelance writer. She was also deeply engaged with life and others; she was grateful for her loving, devoted family, and she developed close, fierce friendships within the CF community, among classmates, and eventually, she fell in love. 

She resists being called ‘an inspiration.’ She writes: “I’m not an inspiration. I’m just a person, grounded in compassion, striving to achieve empathy and wanting to make my way with goodness and grace.” (p. 171) She marvels at the miracle of life: “Our existence is the result of stars exploding, solar systems forming. Our Earth having an environment hospitable to life, and then, finally, millions of highly improvable events accumulating over millions of years to bring us, a capable and conscious bag of stardust, to the here and now.” (p 111) Her memoir is a story of living and dying from CF, but it is also an inside look at the brief life of young gifted writer.

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Sunita Puri, a palliative care attending physician, educates and illuminates the reader about how conversations about end of life goals can improve quality of life, not just quality of dying, in her memoir, That Good Night: Life and Medicine in the Eleventh Hour. Thirteen chapters are grouped in three parts: Between Two Dark Skies, The Unlearning and Infinity in a Seashell. The arc of the book follows Puri as she is raised by her anesthesiologist mother and engineer father – both immigrants from India – Puri’s decision to enter medical school, her choice of internal medicine residency followed by a palliative care fellowship in northern California and her return to practice in southern California where her parents and brother live. Besides learning about the process of becoming a palliative care physician, the reader also learns of Puri’s family’s deep ties to spirituality and faith, the importance of family and extended family, and her family’s cultural practices.

Puri writes extensively about patients and their families, as well as her mentors and colleagues. She plans and rehearses the difficult conversations she will have with patients in the same way a proceduralist plans and prepares for an intervention. She provides extensive quotes from conversations and analyzes where conversations go awry and how she decides whether to proceed down a planned path or improvise based on the language and body language of her patients and their family members. We visit patients in clinic, in hospital, and at home, and at all stages of Puri’s training and initial practice. Some of the most charged conversations are with colleagues, who, for example, ask for a palliative care consultation but want to limit that conversation to a single focus, such as pain management. We also learn of the differences between palliative care and hospice, and the particularly fraught associations many have with the latter term. She feels insulted when patients or families vent by calling her names such as “Grim Reaper” or “human killer” (p. 232), but understands that such words mean that more education is needed to help people understand what a palliative care physician can do. 

As a mediator of extremely difficult conversations, where emotions such as shame, guilt, fear, helplessness and anger can swirl with love and gratitude, Puri finds the grace to acknowledge that all such emotions are part of the feelings of loss and impending grief, and to beautifully render her reflections on these intimacies: “Yet although I am seeing a patient because I have agreed that they are approaching death, if I do my job well, what I actually encounter is the full force of their lives.” (p. 206) Having met many dying people she notes: “Dying hasn’t bestowed upon them the meaning of life or turned them into embodiments of enlightenment; dying is simply a continuation of living this messy, temporary life, humanly and imperfectly.” (pp 221-2) 

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‘It wasn’t his job to explain it over and over, to sit the families down and say, “The husband/the brother/the son you knew is no more, it’s only machines breathing for him now, and you wouldn’t be letting him go, because he’s already gone."’ These are the frustrated musings of Paul, a wearily disillusioned brain surgeon who struggles with the emotional aftermath of delivering grim prognoses to his patients’ families. After comforting a patient’s wife who has decided to remove her husband from life support, Paul hangs himself in his family’s laundry room, leaving neither a note nor trace of what compelled him to take his own life. 

Career burnout, perhaps even a nagging sense of futility, would seem to be among the issues behind Paul’s mysterious suicide—in one conversation with a patient, he alludes gnomically to bad dreams that leave him either flummoxed or exhausted. Whatever the cause, Paul’s death leaves gaping lacunae in the lives of his family—his wife, Anna, and daughter, Danielle—that they struggle to patch and, in their own ways, comprehend. It is Anna who finds Paul, hanging, in the laundry room, though ‘she didn’t scream. She didn’t believe what she saw…' In that moment of speechlessness, of disbelief, Anna devises a ‘cold plan’ to keep secret the true circumstances of Paul’s death. Concealing the truth from her daughter, Anna creates a scaffolding of lies, false impressions, garbled half-truths that shape both Danielle’s and her own perception of the past. 

Years later, in a moment of introspection, Danielle intuits, not likely for the first time, that her 'mother was lying about her father’s death. […] Anna insisted that the heart attack hadn’t woken him, but that didn’t make any sense to Danielle, who could be woken up by the smell of toast.’ Danielle dimly senses that her father had ‘woken up and suffered,’ but cannot grasp the facts that her mother withholds.

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"I AM" is a poem by John Clare with three sestets in iambic pentameter with an ABABAB rhyming pattern unique to each sestet. In it the poet affirms his identity, his sorrows to date and ends with the expressed longing for a happier life in the presence of God and the solitude of Nature. Due to his disorderly life, unconcern for conventional spelling, and transcriptions of his poems by others, there are often multiple versions extant for an individual poem. This is true for "I AM", which Jonathan Bate, the author of a magisterial biography of the poet, states was written in a psychiatric institution about 1846. (1, page 505) For this annotation I have used what many consider to be the most authoritative edition of his poems. The poem also exists in several reliable sites on the internet.

The poet was a troubled man born near Peterborough, Cambridgeshire, England, in 1793, in meager circumstances and remaining so throughout his entire life. Save for a five month period in 1841, Clare spent the last 27 of his 71 years in psychiatric institutions. He wrote his poetry, which primarily celebrates the natural world he spent so much time in alone, before and during his hospitalizations. His reputation as a poet has burgeoned significantly in the last 100 years.

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A psychiatrist and PTSD (post-traumatic stress disorder) specialist, Dr. Shaili Jain has written a book on PTSD and its many angles, from diagnosis to treatment to a larger perspective on cultural and historic influences on the development of traumatic stress. She weaves the story of her own family’s experience with the Partition of India and Pakistan in 1947, particularly its effect on her father and grandparents, as a way to consider the effect of trauma on family, but also how those traumas become ‘unspeakable.’  

A brief but effective introduction outlines the seven parts of the book:
1. Discovering Traumatic Stress: historical perspective and the changing language to describe the effects of trauma.
2. The Brain: the physiologic and psychological underpinnings of PTSD, including effects on memory formation and retrieval.
3. The Body:  such as addiction, cardiac effects and concerns at different stages of life.
4. Quality of Life: domestic and sexual violence, socioeconomic factors.
5. Treating Traumatic Stress: programs, treatment strategies and psychopharmacology.
6. Our World on Trauma: global health, large scale tragedy, terror and war.
7. A New Era: An Ounce of Prevention: resilience, accessibility of care including early and preventative care. 

Additionally, almost 100 pages of notes, glossary, resources and an index provide an easy way to further explore, to use the book to look up specific topics, and underscore the heavily researched nature of the text.   The book is eminently readable, with numerous, well-placed stories of patient encounters and particular experiences and manifestations of PTSD.  These stories are illustrative of the concepts Jain ably explains. However, they also provide an insider’s view of what happens in the consulting room.  In the prologue, Jain describes a young Afghanistan War veteran, who has been hospitalized after a violent outbreak at a birthday party: “Josh’s PTSD was fresh, florid, and untreated…. His earlier poise caves in to reality, and his face falls to anguish.” (p. xvi) We are in the room, listening to the patient, witnessing the tears of the medical student, glimpsing the attending psychiatrist’s response, and relating to Jain, as a psychiatry chief resident, as she understands that the individual before her, even as he shows classic signs of traumatic stress, remains an individual, a person in need of care.   

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The Scar is a powerful, thoughtful, and moving book, part memoir about the author’s illness across some 30 years, part history of depression and its treatment and part essay to evoke cultural and personal values about sickness, suffering, health, and death. Cregan, a gifted stylist herself, draws on literature that deals with human suffering, mortality, and wisdom.  She frankly describes her sorrows and hopes, the death of her baby, her attempts to kill herself, and her survival today with many blessings.   
           
The title refers to a scar on her neck, a result of her effort to cut her throat with a piece of glass so that she would die. This attempt, in a hospital, reflects the depth of her illness and the failure of her caregivers to prevent it. Her book explores the complexity and variety of mental patients and the range of medical responses—some useful, some not—to  treat them. Writing as a survivor, she draws on her journal, hospital records, emails, interviews, and more; she is part journalist, detective, archivist, and forensic pathologist—as if doing an autopsy on the suicide she attempted.
 
Ch. 1
What Happened describes the birth and immediate death of her daughter Anna and her descent into depression and initial hospitalization.

Ch. 2
What Happened Next discusses mental hospitals and her perceptions of being a patient in one. A dramatic paragraph describes her cutting her throat (p. 51).

Ch. 3
How to Save a Life presents electroconvulsive therapy (ECT), from the jarring images of “One Flew Over the Cuckoo’s Nest” to her own experience of some 17 treatments; she reports that these helped in recovery.

Ch. 4
The Paradise of Bedlams gives a history of mental hospitals. She is hospitalized three months, “a prisoner,” in her term.

Ch. 5
Where Do the Dead Go? explores the dilemmas of the living as they mourn the deaths of people they love, including approaches from Judaism and Christianity. Mary has nightmares about her lost baby. She discusses Freud, Rilke, T. S. Eliot and others. She buries Anna’s ashes.

Ch. 6
Early Blues discusses modern attempts of science and the pharmaceutical industry to create drugs for mental illnesses, with influences from psychodynamic and biological concepts.

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Thomas De Quincey was a British writer—essayist, mostly—during the first half of the nineteenth century. He is best known for writing about his personal experiences with opium, which appeared in two sequential issues of London Magazine in 1921, and then published as this book in 1822. He would later write a sequel, and later still a more elaborated version of the original.  

De Quincey’s first encounter with opium was in 1804 when he was eighteen years old. Opium was freely available then and was often consumed for recreational purposes. De Quincey was not seeking it for pleasure, at first. Based on a friend’s recommendation, after suffering excruciating facial and head pain for twenty days, he tried opium to relieve the pain. De Quincey acquired opium in the form of an elixir (laudanum) from a local druggist (“unconscious minister of celestial pleasures!”) (p. 43). The book covers the subsequent eighteen years of his opium use, though he would use it until the end of his life at age seventy-four. 

De Quincey refers to opium as the “dread agent of unimaginable pleasure and pain” (p. 42). The book is organized accordingly. After describing his early years of straitened circumstances including near starvation, he divides the book into sections on “the pleasures of opium,” and “the pains of opium.”  

De Quincey found the pleasures of opium with his first dose in 1804, pleasures that extended past the pain relief it provided.

But I took it: – and in an hour, oh! Heavens! what a revulsion! what an upheaving, from its lowest depths, of the inner spirit! what an apocalypse of the world within me! That my pains had vanished, was now a trifle in my eyes: – this negative effect was swallowed up in the immensity of those positive effects which had opened before me – in the abyss of divine enjoyment thus suddenly revealed. (p. 44)

For more of these pleasures, De Quincey drank laudanum over the next ten years at a frequency he describes variously as “occasionally,” “at intervals,” and “seldom…more than once in three weeks: this was usually on a Tuesday or a Saturday night.” He learned that some time was needed between “several acts of indulgence in order to renew the pleasurable sensations,” a property of opioids pharmacologists would later call tolerance (pp. 8-9).

De Quincey eventually became familiar with the pains of opium when the return of severe intestinal pains he suffered in his “boyish days” made it necessary that his laudanum use become “an article of daily diet,” (p. 9) because he “could no longer resist,” and “could not have done otherwise” (p. 59). The amount of opium De Quincey consumed as a result was enough to cause severe reactions when he tried to reduce his dose: “It is a state of unutterable irritation of the stomach… accompanied by intense perspirations, and feeling such as I shall not attempt to describe without more space at my command” (p. 71).

Though relieving pain was the initial reason for his daily diet of laudanum, for most of the next eight years, avoiding withdrawal reactions became the more important motivation for De Quincey’s laudanum intake: “it was solely by the tortures connected with the attempt to abjure it, that it kept its hold” (p. 86). He eventually knew he had to quit when he realized:  “I must die if I continued the opium: I determined, therefore, if that should be required, to die in throwing if off” (p. 87). Throwing off opium was not easy for De Quincey as he experienced “torments of a man passing out of one mode of existence into another,” (p. 88) but he claims he was ultimately successful.

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Summary:

Maggie O’Farrell describes the book in a scene involving a casual conversation she has with her mother over tea.

As she lifts the pot to the table, she asks me what I’m working on at the moment, and, as I swallow my water, I tell her I’m trying to write a life, told only through near death experiences. She is silent for a moment, readjusting cosy, milk jug, cup handles. ‘Is it your life?’ she asks. ‘Yes,’ I say, a touch nervously. I have no idea how she’ll feel about this. ‘It’s not…it’s just…snatches of a life. A string of moments. Some chapters will be long. Others might be really short.’ (pp. 142-143)

This conversation is the only place in the book where O’Farrell describes her intentions in writing it. But, what O’Farrell describes to her mother is exactly what the book is, a memoir comprising seventeen “brushes with death,” as she calls these moments. There is no prologue, there are no interludes, there is no coda, just the seventeen stories.

Few people will experience any one of these events, and perhaps only O’Farrell has experienced all of the events she tells us about. She categorizes them based on the anatomy involved in a particular brush with death. For example, some of the chapter names are: “Lungs” (three times), “Neck” (twice), “Abdomen,” “Intestines,” “Cerebellum,” “Circulatory System,” “Whole Body.” The one exception is the chapter, “Daughter.”

Other ways of categorizing the near-death experiences O’Farrell covers could be based on whether they threatened O’Farrell herself or any of her children, whether they were the result of bad luck (e.g., illness) or bad judgment (e.g., near drowning), or whether the threat originated outside the body (e.g., accident) or within the body (e.g., illness, medical procedures). The brushes with death from outside the body involved violence (twice), decapitation (twice), drowning (three times), a plunging commercial airliner, and a knife throwing exhibition. From within her body, close calls involved encephalitis as a child, amoebic dysentery while traveling in a developing country, a Cesarean section gone awry, and a few missed miscarriages (i.e., when fetus dies but no signs or symptoms manifest and surgical procedures become necessary). A daughter was born with severe allergic conditions that caused the child misery pretty much all the time interspersed with episodes of life-threatening reactions. O’Farrell’s son was almost lost in one of her near drownings.

O’Farrell leaves it to the epigraph she placed at the beginning of the book to stitch together how these stories collectively reveal the possibility of the human spirit to get us through the most serious and persistent challenges to our being. For this epigraph, she takes a line from Sylvia Plath’s novel, The Bell Jar:

I took a deep breath and listened to the old brag of my heart. I am, I am, I am.

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Jolted awake by a ringing telephone, the narrator (assumed to be Mukherjee) listens to his mother give a tearful report of his 83-year-old father’s waning health. Telling her that he will book the next flight from New York to New Delhi, Mukherjee’s mother wavers, regretting that her call now spurs him to purchase expensive airfare. In a tone of knowing sarcasm, Mukherjee writes, “The frugality of her generation had congealed into frank superstition: if I caught a flight now, I might dare the disaster into being.” Arriving in “sweltering, smog-choked Delhi,” Mukherjee joins his mother in a hospital’s I.C.U. A physician himself, Mukherjee notes the facility’s piteously tumbledown conditions, its crumbling floors and exposed utilities, jibing that, if one were to trip on the concrete rubble, “a neurologist would be waiting conveniently for you around the corner.” No doubt accustomed to the comfortable amenities of American hospitals, Mukherjee magnifies the miserable disarray of the Delhi facility—a defective heartrate monitor, a fractured suction catheter, a hospital bed with cracked wheels, a delivery van used as an improvised ambulance. This world, far from New York, is mired in seemingly eternal disrepair: “Delhi had landed upside down. The city was broken. This hospital was broken. My father was broken.”

These would seem to be the smug observations of a dismayed tourist were it not for Mukherjee’s thoughts on the intricate and noiseless machinery of homeostasis, the cohesive force that sustains internal constancy. “There’s a glassy transparency to things around us that work,” he writes, “made visible only when the glass is cracked and fissured. […] To dwell inside a well-functioning machine is to be largely unaware of its functioning.” As Mukherjee witnesses the spiraling decline of his father’s health within a deteriorating, dismally ill-equipped healthcare system, he focuses on the regularities of equilibrium by juxtaposing the homeostasis of healthcare institutions and human bodies. Mukherjee relates a memorable story from his early career when he staffed nightshifts at an urban clinic, where his colleague, an older nurse, stacked oxygen masks, oiled oxygen valves, and arranged beds. He belittled the nurse’s exacting preparations as an “obsessive absurdity” but, when his first patient arrived with an asthma spasm, he realized how critical the clinic’s flawless order was to his life-saving efforts: “The knob of the oxygen turned effortlessly—who would have noticed that it had just been oiled?—and, when I reached for an I.V. line, a butterfly needle, just the right size and calibre, appeared exactly when I needed it so that I could keep my eyes trained on the thin purplish vein in the crook of the elbow.” Had these things not been prepared, had they not been finely tuned for use, had an instrument been misplaced, would Mukherjee’s patient have lived? He experienced an example of institutional homeostasis, conducive to optimum medical care, which facilitated essential processes to occur successfully without mishap.  

Now in the New Delhi hospital, Mukherjee notes that its medical staff has “to settle for a miserable equilibrium. Amid scraps and gaps and shortages, they had managed to stabilize [my father].” He arrives at another stark realization, “I had versed myself in the reasons that my father had ended up in the hospital. It took me longer to ask the opposite question: What had kept my father, for so long, from acute decline?” Recollecting his father’s life at home in between hospitalizations, Mukherjee references a different kind of homeostasis that helped to prolong his life. For example, when his father was unable to go to the local market to haggle for fish and cauliflower, the vendors came to his home for usual business— “The little rituals saved him. They […] restored his dignity, his need for constancy.” Mukherjee accentuates the protean workings of homeostasis, its variegated forms that sustain the patterns of normalcy that give regularity and meaning to human life—indeed, equilibrium is not only an infinitude of minute chemical and biological factors, but familiar ease in a world that one knows and loves. Equilibrium, however rigorously maintained, succumbs to decay. Mukherjee aptly quotes Philip Larkin’s poem, “The Old Fools”: “At death you break up: the bits that were you / Start speeding away from each other for ever / With no one to see.” Mukherjee notes that the experience of his father’s decline was not so much observing him disintegrate into a similar kind of molecular dust, as imaged in Larkin’s verse, as it was his solidity upheld by homeostatic forces, a steady chugging of biological gears that made intricate compromises to sustain his deteriorating body.

After his father emerges from the coma, Mukherjee enlists curious pedestrians to help lift him into a makeshift ambulance. His father’s jostled body resembles a “botched Indian knockoff of an ecstatic Bernini.” The thematic kernel of Mukherjee’s narrative, homeostasis, draws scrutiny not only to the experiences of individual bodies but the systems and institutions that heal them, to the material environments in which fragile bodies are cared for, repaired, and rehabilitated. “The hospitals that work, the ambulances that lift patients smoothly off the ground: we neglect the small revolutions that maintain these functions,” reflects Mukherjee, “but when things fall apart we are suddenly alert to the chasms left behind.”  

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In 2006, Emergency medicine trainee, Damon, and his wife, Trisha, have two boys, Thai (age 4) and Callum (age 2.5).  All is well in their lives until Callum begins vomiting for no apparent reason.  He is found to have medulloblastoma, an aggressive brain tumour, for which the only possible hope for a cure comes from surgery and six cycles of ever more arduous chemotherapy with stem cell recovery at Toronto’s Hospital for Sick Children. The little family moves to Toronto and commits to supporting Callum as best they can, ensuring that he is never alone even during his long weeks of reverse isolation. They also try to keep Thai nearby, involved and aware, with the help of a local school and grandparents. But Callum dies during the last cycle of treatment.  

Saddened, exhausted, and bereaved, Damon and Trisha go back to their home town and try to (re)construct their lives, slowly returning to studies and work. They find meaning in creating tangible and intangible memorials to their lost son, and they find purpose in the more difficult task of moving forward, never losing the pain of grief. They adopt a little girl. Damon knows that Callum is always with him and the experience of his illness and death has dramatically infused his work as a physician.

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