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Editing Humanity

Davies, Kevin

Last Updated: Jun-28-2022
Annotated by:
Coulehan, Jack

Primary Category: Literature / Nonfiction

Genre: History of Medicine

Summary:

Editing Humanity explores the history, biology, sociology, and ethical import of CRISPR (“clustered regularly interspaced short palindromic repeats”), the major new DNA technology indicated in the book’s subtitle, “The CRISPR Revolution and the New Era of Genome Editing.”  Using CRISPR, researchers can manipulate the DNA of animals, plants and microorganisms with extremely high precision. In particular, scientists now have the potential to customize the human genome.  

What is CRISPR? To quote Davies, “CRISPR is a small subsection of the bacterial genome that stores snippets of captured viral code for future reference, each viral fragment (or spacer) neatly separated by an identical repetitive DNA sequence.” (p. 23) When the cell is reattacked by a virus, an RNA copy of that virus’ stored “signature” forms a DNA-splitting complex that destroys the incoming virus. In 2012, Jennifer Doudna, of the University of California, Berkeley, and Emmanuelle Charpentier, of the Max Planck Institute, Berlin, demonstrated that CRISPR could be engineered to edit any gene. One could, for example, replace a disease-causing mutation in any DNA segment with the healthy variant, thus preventing genetic disease.  

The author, Kevin Davies is a geneticist and science writer whose previous books include Cracking the Genome and DNA: The Story of the Genetic Revolution.  In Editing Humanity, he discusses an array of actual and potential applications of CRISPR technology, including human disease prevention by altering susceptibility of animal vectors, improving farm productivity, and even resurrecting extinct species. However, the most powerful and controversial topic is genetic manipulation of the human embryo. Davies devotes several chapters to the cautionary tale of the young Chinese scientist He Jiankui who engineered the world’s first gene-edited babies, and the scandal and disgrace that followed. (He was convicted in China of “illegal medical practice” and sentenced to prison.)

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Crying in H Mart: A Memoir

Zauner, Michelle

Last Updated: Jun-23-2022
Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

While Michelle Zauner’s remarkable memoir is an expression of her profound grief after her mother died, her story simultaneously reflects on her complicated relationship with the woman she called Umma and with her own Korean-American identity. The H Mart of the title, an Asian grocery chain, provided the ingredients for the dishes that suffused their relationship, her identity, and her grief. Food and memory animate the memoir itself.  

Zauner was 25 when her mother was diagnosed with an aggressive late-stage, mid-life cancer. Also the only daughter of a white American father, Zauner was a rebellious child, resentful of Umma’s version of tough love. Growing up the lone Asian student in her Oregon community, she felt both othered at school and an outsider among her Seoul relatives. Just as she was beginning to appreciate her Korean heritage and understand her mother’s love, she learned about Umma’s diagnosis.  

The first half of the memoir exuberantly brings to life scenes from Zauner’s childhood and her brief post-college years in New York City, interrupted by her dedicated caregiving. Attempting to save her mother, Zauner at times overwhelmed her with her native foods. “I would radiate joy and positivity,” Zauner pledged. “I would learn to cook for her—all the things she loved to eat, and I would single-handedly keep her from withering away” (69). Her optimistic culinary efforts produce a poetry of exacting descriptions of the flavors and textures and preparation of those foods. It’s grimly ironic that the chemotherapy her mother endured wiped out her ability to taste or digest Zauner’s loving offerings of health.  

The second half turns from living with Umma to living without her. Wishing to sustain her bond with her mother as Zauner grieved, she continued to prepare her Korean family’s recipes. Walking down H Mart’s redolent isles generated “waves” of sorrow that mark the enduring ebb and flow of her grief. Unsuccessful with conventional therapy, she found cooking a preferable form of self-care. “Every dish I cooked exhumed a memory. Every scent and taste brought me back for a moment to an unravaged home. Knife-cut noodles in chicken broth took me back to lunch at Myeongdong Gyoja . . . The kalguksu so dense from the rich beef stock and starchy noodles it was nearly gelatinous. My mother ordering more and more refills of their famously garlic-heavy kimchi” (212-213). As if miraculously, a few years after Umma died, Zauner’s itinerant music career ignited. The band she has fronted, Japanese Breakfast, recorded an album, Psychopop (with a song she wrote about her mother, “In Heaven”). Then they toured the U.S. and South Korea. Although her mother was skeptical about a musical career, Zauner imagined that Umma would be “glad that I had finally found a place where I belonged” (233). 

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Wild Boy

Dawson, Jill

Last Updated: Jun-15-2022
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Young doctor Jean-Marc Itard is serving in the Paris home for deaf-mute children. When a “wild boy” without speech is found near a village in Aveyron, France, Itard accepts the challenge of educating him. Many senior colleagues, including Philippe Pinel, opine that it will be impossible, even when Itard determines that the boy is not deaf. The lad, now named Victor, seems to be about ten years old, but his small size owing to malnutrition may be deceptive; he quickly reaches puberty. Helped by the care and empathy of the home’s housekeeper, Madame Guérin, and Julie, her daughter, Victor learns to perform several domestic tasks but manages to speak only a few words.

 His situation is a mystery. Caregivers marvel at how he had been able to survive alone in the woods for several years. They wonder if he ran away from an abusive home, or if he was deliberately abandoned because of his disability. A crisis emerges when a woman appears claiming to be his relative. Itard eventually abandons the effort to educate Victor, but he is allowed to continue living with the Guérins.

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The Inkblots

Searls, Damion

Last Updated: Jun-14-2022
Annotated by:
Madsen, Danielle

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

Damion Searls’ The Inkblots: Hermann Rorschach, His Iconic Test, and the Power of Seeing is a comprehensive history of Rorschach’s life and an overview of the use and influence of his psychiatric test over the past century.

Rorschach grew up in Switzerland, the son of a widowed middle school art teacher who would die while Rorschach was a teenager after suffering from years from neurological disease caused by lead paint exposure. Rorschach debates whether to study drawing and become a teacher or attend medical school and pursue a career in neurology. The book follows his career across three countries after choosing to do the latter, until he becomes a practicing psychiatrist at a rural Swiss institution. It traces his psychiatric influences—Bleuler and then Jung as professors while at the University of Zurich and Freud via their influence—as well as his artistic ones—Ernst Haeckel, the pre-modernist galleries of Zurich, then Russian Futurism. It also provides an overview of the field of psychiatry at the time: schizophrenia was considered an unremittable condition named dementia praecox, psychiatric institutions included patients with tertiary syphilis, and increasing neurologic knowledge and psychiatric techniques improved diagnostics but not treatments.

The earliest inkblots of Rorschach’s are temporary creations made with a local schoolteacher and administered to patients and pupils, formulated as one of dozens of strategies to gain insight into people. Rorschach’s patients see much in these inkblots, but the schoolboys little, and the experiment is abandoned. He returns to the idea a decade later, with greater stress placed on the image. He requires that they look organic rather than made, imply movement, and have multiple foreground/background interpretations. After creating a set of ten products, he starts to categorize results. He codes whether the answers are seen in the whole image or a detail; whether they are based on form, color, or movement; whether the figures seen in the image are well- or poorly-defined; and how many and what category of answers are seen. The coded results enable Rorschach to give accurate blind diagnoses and he begins to gain traction in psychiatric community. However, he dies before his inkblots become popular.

The book follows the test as it travels to America and gains acclaim with psychologists. It is used in clinic and hospitals and becomes a standard part of psychology training. The inkblots are part of military personnel assessments and scientific studies. They are referenced in criminal trials and family court. They are applied in anthropology and education. They show up on movie posters and in fashion shows and become a household name. As it details these broad applications, the book explains the battle over how the test should be given and whether analysis of the results should be open-ended interpretation or a standardized scoring method. It also details society’s constantly shifting belief as to whether psychological testing is a valid diagnostic tool.  

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Summary:

In this age of intellectual sub-sub-sub-specialization, it would be unfair to say that people have completely abandoned grand narratives in their discipline. There are still brave souls who are willing to take on the big picture and try to synthesize what is known in their field as well as allied areas into a cohesive all-encompassing story. Stephen Pinker is a prominent example of someone who has leveraged his expertise in psychology and linguistics to fashion upbeat histories of humanity. But it would be fair to say that it is unusual to encounter a book that takes on the world and confidently asserts, “I think you have it all wrong.” To possibly be correct in the claim would be rarer still. This book by Graeber and Wengrow falls squarely into that small category.

The book has a bittersweet back story that only adds to its appeal. It represents the result of a decade long collaboration between Graebner, an anthropologist, and Wengrow, an archeologist. It originally started as pure academic fun between two colleagues but quickly escalated into a serious dialogue that culminated in a book with 83 pages of notes and a 63-page bibliography. Sadly, Graeber died unexpectedly at age 59 of necrotizing pancreatitis shortly after completing the work and did not live to see its publication.

The book has attracted a great deal of attention because it takes on the accepted grand narrative of human development, namely, a linear evolution from a primordial state of innocence and equality to a society in which hierarchy and inequality are hard wired into existence. The key step in this transition is the move from small groups of hunter-gatherers to agriculture-based groups that gradually grew in size and became more centralized in structure. This resulted in the prioritization of private property and the consolidation of the population into cities that mandated top-down control. Regardless of whether you invoke Rousseau as your intellectual guide or Hobbes as your rationalization for a powerful sovereign state, the traditional view is that you will reach the same endpoint, the loss of equality. Graebner and Wengrow challenge this “myth.” Their operational method is to examine the scientifically sophisticated data that have been gathered by archeologists from prehistoric sites around the world. They conclude that the prevailing view shortchanges human inventiveness in framing how people have chosen to live and undermines our freedom to reconsider the way society is organized. As an example of the scope and originality of the book, in the second chapter, they argue that this Enlightenment notion of “noble savages” and steady linear progress may have arisen among the French intelligentsia in the 18th century in response to the interaction of North American Indians with the French in the New World. Heady stuff that you thought you would not have to think about after college.

The book is loaded with facts and details about burial grounds, temples, houses, and playing fields that archeologists and anthropologists use as the ground truth in their work. They document how there was great variability and fluidity in social structure over course of the year in prehistoric times, demonstrating that though men and women could not control their environment they could do their best to adapt by alternating between planting and food gathering before there were “farms.”  In contrast to the view that agricultural groups, with their need for defined plots of land, created the notion of private ownership, they cite real world evidence from places as far flung as Poverty Point in Louisiana to the Australian Western Desert that the sacred realm was the origin of individual possession. They contrast in great detail the lifestyles of communities living along the west coast of North America, in the region from Washington State to northern California. The evidence is clear that while the northern communities were hunter gatherers, patriarchal, more warlike, and more ostentatious, those in the south were characterized by a less showy land-based public sphere and a more peaceful demeanor that was reflected in a greater role of women in defining the activities of daily living and social structure. The communities were not isolated and had contact with one another, underscoring the fact that the ways of life were active choices and not passive default modes. The start of farming was gradual over thousands of years and was not a revolutionary change, and prehistoric communities could switch their mode of sustenance in the face of changing circumstances.

I will not have to take a final examination on the book so I cannot say that I can repeat the names of all the Amerindian communities living in middle America along the Ohio and Mississippi Rivers or recount the details of all the artifacts of and rites performed by the Mesoamerican civilizations. Graebner and Wengrow discuss an incredible number and variety of archeological sites throughout Eurasia and Africa, in addition to those in the New World, so I have to take the authors’ recitation of the facts on faith. I am sure that some of their interpretation is open to question by experts in the fields. But Graebner and Wengrow will certainly get you thinking.

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My Borrowed Face

Nigliazzo, Stacy

Last Updated: Jun-06-2022
Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poem

Summary:

"My Borrowed Face," Stacy Nigliazzo's third full-length poetry collection, contains 55 poems, presented as a continuous flow without division into sections. Once again, Nigliazzo's poems are spare, often only phrases or words scattered on the white page, a form that leads the reader's eye from one image to the next. (For a brief discussion of how this poet uses white space, see the annotation of her second collection, “Sky the Oar” on this database.)  The poems in this collection were written during the Covid pandemic; they speak of the toll the virus has taken and continues to take not only on patients but, in these poems, on the caregivers--specifically the poet.  Nigliazzo, an emergency room nurse who has worked through five pandemic surges, is the perfect narrator to take us along on her rounds.

The book's early poems look back before the pandemic ("5920 Days Pre-Pandemic," p. 11) and then they come closer ("30 Days Pre-Pandemic," p. 12), until they begin to chart, with stark imagery, the beginning and the continuation of the pandemic.  We walk with the poet / nurse as she ticks off the days from "First Sunday on the Ward, Pandemic," p. 15, through "575 Days Out," p. 41. 

The 16 poems that close the book are a rest, in a sense, from the pandemic.  These poems are individual reflections, like quick photographs, that capture a variety of observations both personal and professional. "Self-Portrait as the Pink Moon," p. 42, and "Blue Book," p. 43, hark back first to Nigliazzo's mother, pregnant with the poet, then to her mother's death.  In a way, circling this collection back to the beginning, birth and death, the never ending turning.

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Annotated by:
Coulehan, Jack

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

After 65 years of marriage, two life-partners face the prospect of final separation, as one of them develops multiple myeloma. This is the crisis that led Irvin Yalom, eminent psychiatrist, novelist, and pioneer of existential psychotherapy, and his wife Marilyn, acclaimed feminist author and historian, to collaborate in writing the story of their journey through Marilyn’s final months of life. In the resulting book, Irvin and Marilyn write alternating chapters until Marilyn becomes unable to write. After her death, Irvin continues with the story of his bereavement.  

Marilyn’s chapters include reflections on love and illness, ranging from Emily Dickinson and Henry James to Paul the Apostle. She frequently expresses her gratitude: “I can still talk, read, and answer my emails. I am surrounded by loving people in a comfortable and attractive home.” (p. 20) Most of all, she is thankful for her husband, “the most loving of caretakers.” (p. 15) Yet, as her disease progresses, she comes “to the understanding that I would never be the same again—that I would pass through days of unspeakable misery while my body would decline and weaken.” (p. 76) She decides to pursue the option of physician-assisted suicide, which is legal in California, when her suffering becomes overwhelming.  

In his chapters, Irvin resists this decision, maintaining hope for additional “good” life, despite all evidence to the contrary. Near the end, Marilyn’s pain and other symptoms become so severe that she cries out, “It’s time, Irv. It’s time. No more, please. No more.” (p. 139) Her physician arrives, confirms her intention, and surrounded by her whole family, Marilyn sucks the liquid through a straw and quietly passes away.

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The Steel Windpipe

Bulgakov, Mikhail

Last Updated: Jun-02-2022
Annotated by:
Coulehan, Jack

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

A little girl is brought to the rural hospital by her mother, who throws herself at the feet of the young doctor, “Please do something to save my daughter!” It seems that she has been suffering from a sore throat and is now having difficulty breathing. The doctor looks into her throat; diphtheria is evident.At first he scolds the mother for not having brought the girl earlier. Then he suggests surgery: a tracheotomy. The doctor knows this is the only way he might save the child, but he is consumed by anxiety because he has never performed the procedure. At first the mother objects to surgery, but then relents. The tracheotomy is successful and the child survives.

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Annotated by:
Dammeyer, Kristen

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Life According to Sam provides insight into the life of Sampson “Sam” Berns and his family. At the beginning of the film, Sam states, “I want you to know me.” Accordingly, the film alternates between highlighting Sam’s experiences as he navigates life as a teenage boy and his participation in the first ever clinical trial for progeria.  At the start of the film, Sam is a 13-year-old boy in middle school. As with many other boys his age, his interests include Legos, music, and spending time with his friends, or his “bros” as he affectionately calls them.  

But Sam was diagnosed with progeria just prior to his second birthday. Progeria is a rare disease that affects approximately 250 children worldwide, caused by a genetic mutation which codes for the formation of an abnormal toxic protein, protegrin, that builds up in organs over time. It is a premature aging syndrome that causes progressive cardiovascular decline and for which there is no cure. The average age of death for these children is 13, and they die primarily of heart attacks and strokes.  

At the time of Sam’s birth his mother Leslie was a pediatric intern and his father, Scott, a pediatric emergency medicine physician. After his diagnosis, the family devoted themselves to progeria, an orphan disease which at the time had no identified genetic etiology, no foundation, no research, and no treatment. With the help of Leslie’s sister Audrey, the family started The Progeria Research Foundation, which raised over $1.25 million dollars, funded the discovery of the gene for progeria, and began the first clinical trials to test treatment for the disease. 

In the film, Leslie spearheads the first ever clinical trial for the treatment of progeria. The drug, lonafarnib, had demonstrated efficacy in mice and was FDA approved for a clinical trial including 28 children from 16 countries. The children would receive the medication for 2.5 years and return to Boston Children’s Hospital three times per year for a battery of tests. At the end of the trial, Leslie goes through the arduous process of writing up the results and submitting the trial for publication in hopes of making the drug more widely available for children with progeria. In the end, the trial results are published and the results for individual patients are released. While the medication falls short of being a cure, there are glimpses of hope in patients whose disease progression has been slowed or even reversed.

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Summary:

In Sweden, hundreds of children lie unconscious for months or even years in their homes or hospitals. Full neurologic evaluation, including MRIs, EEGs, and other studies reveal no abnormalities.  None of these children are Swedish. They are immigrants from the Near East or former Soviet republics, whose families are seeking permanent asylum in Sweden. If asylum is granted, the children gradually recover. Neurologists have named this mysterious illness “resignation syndrome” and classified it a functional neurological disorder.  

Suzanne O’Sullivan, an Irish neurologist, set out in 2018 to study children suffering from resignation syndrome, a project that led her to investigate other outbreaks of mysterious illness around the world. In The Sleeping Beauties, O’Sullivan discusses many such disorders, ranging from grisi siknis in Nicaragua (convulsions and visual hallucinations) to a form of sleeping sickness in Kazakhstan. These disorders have several features in common: absence of findings on medical and psychiatric tests, contagiousness (i.e. they seem to spread rapidly among populations in close contact), and significant morbidity.  

Dr. O’Sullivan notes “there is a disconnect between the way mass psychogenic disease is defined and discussed by the small number of experts who study it and how it is understood outside those circles.” (p. 257) The public finds reports of such illnesses difficult to believe. In the United States, we tend to believe that such illness, if it exists at all, occurs only in “backward” cultures and not in our enlightened society. On the contrary, the author presents “Havana syndrome,” as a case of mass psychogenic disease that first appeared among American diplomats in the Cuban capital in 2016. No consistent brain abnormalities have ever been found, and extensive study has ruled-out the possibility of a sonic weapon.  Dr. O’Sullivan believes that Havana syndrome is very likely a functional neurologic disorder occurring against “a background of chronic tensions within a close-knit community.” (p. 257)

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