Life According to Sam

Fine, Sean; Nix Fine, Andrea

Last Updated: May-26-2022

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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The Sleeping Beauties and Other Stories of Mystery Illness

O'Sullivan, Suzanne

Last Updated: May-23-2022

Coulehan, Jack

Primary Category: Literature / Nonfiction

Genre: Longform journalism

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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The Dropout

Meriwether, Elizabeth

Last Updated: May-19-2022

Sood, Shefali

Primary Category: Performing Arts / Film, TV, Video

Genre: TV Program

Summary:

Based on the 2021 podcast of the same title produced by Rebecca Jarvis, The Dropout is an 8-episode miniseries starring Amanda Seyfried as the infamous biotechnology fraudster Elizabeth Holmes and Naveen Andrews as her much older boyfriend-turned-accomplice, Ramesh “Sunny” Balwani. The miniseries documents the real-life story of Elizabeth Holmes and her evolution from an ambitious, dedicated and somewhat awkward teenager into a ruthless, immoral and still quite awkward CEO of Theranos, a company she founded after dropping out of Stanford her sophomore year. She claimed to develop technology to run hundreds of diagnostic medical tests on a single drop of a patient’s blood. She defrauded hundreds of doctors, investors, pharmaceutical companies and even Walgreens along the way and put hundreds of patients who received faulty Theranos blood test results at risk. This year, Holmes was found guilty on four counts of fraud by a federal grand jury.

The miniseries begins in Holmes’ childhood and utilizes footage from her federal deposition and media interviews to document her evolution from having an innocent desire to invent something to help people to a grifter who put others in danger without a second thought. In her teenage years, Holmes idolizes Steve Jobs. Instead of boyband posters in her room, she has photos of him with Apple products. She spends a summer in China in a language immersion program, where she meets a man 30 years her senior, Sunny Balwani, and strikes up an uncomfortable friendship after learning of his success in business. She is shown to be somewhat of an outcast in school, practicing being excited for a party in a mirror and speaking almost every day with Balwani instead of her peers. Her conversations with Balwani mostly are about her ideas to help people and her desire to be a billionaire. This goal of helping others pushes her to study biomedical engineering at Stanford. She proudly proclaims to family friend Dr. Richard Fuisz, a physician-turned-inventor, that she is in the top 10% of applicants. At Stanford, she is incredibly focused on her goal to invent, and with an unrelenting fervor, she enrolls in graduate level classes and pitches ideas to professors. She is a teacher’s pet; however, when she pitches her idea for a medical drug delivery patch to Dr. Phyliss Gardner, a highly accomplished physician and researcher, her world crashes. Dr. Gardner immediately shoots down her idea and tells her to focus on her schoolwork before trying to invent the next big thing. Holmes can’t take no for an answer and quotes Yoda from Star Wars: “Do or do not. There is no try.” Dr. Gardner responds that in medicine and science, some things are impossible and recognizing that is also part of the scientific process.

This all changes soon after pitching an idea for a blood test using a single drop of blood to Dr. Channing Robertson, an influential chemical engineer at Stanford. He backs her idea and gives her capital for a company. She encourages her parents to let her drop out of Stanford, citing Steve Jobs, Michael Dell and other influential tech leaders as examples, and uses her tuition money to establish Theranos.

Theranos, a combination of the words therapy and diagnosis, takes off, with significant roadblocks, fueled only by Holmes' dreams. Holmes neither has the scientific background nor the leadership skills to lead the company. She does little in the chemistry labs and her lack of engineering, chemistry and medical knowledge prevents her from being able to pitch the idea successfully to healthcare venture capitalists. The blood testing device requires technology that would take years to build and require significant scientific collaboration that does not exist at Theranos. She needs data for investors that the devices are complete and work, so enrolls the faulty, not yet completed devices in a trial testing the blood of cancer patients. This leads to a tense encounter between lead engineer Edmond Ku and Holmes outside a cancer clinic. Ku states that he is an engineer, not a healthcare provider, and he is uncomfortable looking these patients in the eye and testing their blood on a machine he knows does not work. He is clearly very upset; but Holmes forces him to go inside and collect the samples. The clinical trial goes nowhere.

After almost running the company into the ground, she convinces the Board to let her stay CEO if she brings on Balwani, with whom she is in a romantic relationship, as chief operating officer. Balwani offers advice on how to be a CEO of a tech company and encourages her to change her management style. The departments at Theranos become siloed to a point that scientists have no idea what is happening in the executive, marketing and media departments and vice versa. All information comes from Holmes. She spends no more time in the lab and has no meetings with lab personnel, but her name is on every patent. She markets herself as a young female tech CEO in a landscape dominated by men in sweatshirts. Her charisma and newfound business acumen allows her to secure a deal with Walgreens in which Theranos’ devices will be in Walgreens Wellness Centers for use by patients. She does not tell any of the scientists working on the device and does not consult any physicians. She shares no data with Walgreens about the design of the device, its accuracy or validity, citing trade secrets. When her lead chemist, the celebrated Dr. Ian Gibbons, catches wind of this plan, he confronts Holmes, who fires him on the spot for not having the same vision. Amidst pressure from the scientists, she rehires him the next day, but prevents him from working in the lab ever again. The toxic environment created by Holmes eventually causes Dr. Gibbons to commit suicide.

The Theranos devices for the Walgreens agreement fail quality control checks and cannot be used. Holmes and Balwani create a plan in which they use Siemens devices with Theranos logos to run the single drop blood patient samples which have been diluted to provide enough sample to be read by the Siemens machine. This leads to wildly inaccurate results being sent to patients. Examples include a high estrogen reading in a woman with a history of ovarian cancer, suggesting remission; a high thyroid hormone level in a pregnant woman already on thyroid medication, almost prompting her doctor to alter her dosage, which would be fatal for the fetus; and a high troponin level in a man with cardiovascular disease indicating he may be having a myocardial infarction. The lab technicians are aware of these inaccurate results. Eventually two techs, Erika Cheung and Tyler Schultz, the grandson of former Secretary of State George Schultz a and a Board member at Theranos, leak what is happening to a journalist, John Carreyrou at the Wall Street Journal, despite immense legal and physical threats from Holmes and Balwani. Eventually, using evidence from Cheung, Schultz, former scientists at Theranos, and physician-advocates among others, Carreyrou writes an article in the Journal exposing Theranos and Holmes for what they are --frauds. This spirals into the Centers for Medicare and Medicaid Services shutting down Theranos labs indefinitely and leads to thousands of lawsuits regarding Theranos products. Holmes loses all credibility and is arrested on federal charges of fraud and conspiracy to commit fraud.

In the last scene, Holmes visits the office with her new dog to speak with a former Theranos lawyer, who can no longer find a job as a result of the scandal. She boasts about her new boyfriend. The lawyer confronts her, “you hurt people.” Holmes denies this vehemently saying she just ‘failed to deliver’ as CEO and runs frantically out of the office where she breaks down while waiting for her Uber.

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Site Fidelity

Boyles, Claire

Last Updated: May-16-2022

Zander, Devon

Primary Category: Literature / Fiction

Genre: Collection (Short Stories)

The Invention of Medicine: From Homer to Hippocrates

Lane Fox, Robin

Last Updated: May-13-2022

Coulehan, Jack

Primary Category: Literature / Nonfiction

Genre: History of Medicine

When We Cease to Understand the World

Labatut, Benjamin

Last Updated: May-09-2022

Trachtman, Howard

Primary Category: Literature / Fiction

Genre: Historical Fiction

Summary:

When we think of genetics and pedigrees, we expect our traits and characteristics to be passed down in a predictable pattern from parents to children. In his book Far From the Tree , Andrew Solomon labels this transmission from one generation to the next as vertical identity. However, his book focuses on circumstances where inheritance follows what he calls a horizontal pattern. In these cases, the offspring have an inherent or acquired trait that is foreign to their parents. They land far from the anticipated spot under the tree canopy and are dramatically different from their parents. He or she must acquire their identity from a peer group that is outside the parents’ experience. One chapter in Solomon’s book focuses on genius as seen through the lens of the violinist Joshua Bell and his family. Most of us would gratefully welcome a child of genius whether in science, architecture, or music and embrace the apple that landed far from the tree. Reading Benjamin Labatut’s riveting book might cause you to rethink this thought experiment.

Nothing will quite prepare you for the literary world that Labatut has invented. It is a unique blend of fact and fantasy, an incremental layering of fictional conceits on known historical details. A stream of people from history pass through the book, some deservedly famous and others more obscure. But all of them are possessed of genius. All of the characters lived through the turbulent first third of the 20th century when quantum mechanics revolutionized the traditional understanding of physics. They confronted the challenge that this new knowledge presented to the grand view that people had held about how the universe was designed and operated.

The book opens with Fritz Haber, whose research on nitrogen fixation chemical reactions provided the basis for the production of fertilizers, pesticides and explosives. Haber’s work had diametrically opposite effects on the course of history. On the one hand, he enabled dramatic increases in agricultural crop yields and prevented global hunger. At the same time, his discoveries increased the carnage in World War I and yielded compounds that led to innumerable deaths by asphyxiation in the trenches in no-man’s land and, later, in the Nazi death camps. There is Karl Schwarzschild who was able to solve Einstein’s equations in the general theory of relativity while fighting in the German front lines during World War I. He identified the potential existence of black holes, Schwarzschild singularities, long before Stephen Hawking made them famous. Alexander Grothendieck, considered the most influential mathematician of the last hundred years, also passes through the pages of Labatut’s book. After an extraordinarily creative career in which he totally upended established concepts in geometry and number theory and other mathematical fields, he ended up abandoning his life’s work. He devoted himself to Buddhism and, retreating to a secluded village in the Pyrenees, he lived out his last years alone and unrecognized. Erwin Schrodinger is forced to enter a Swiss sanatorium to convalesce from tuberculosis. While there, under the influence of a teenage girl similarly afflicted with tuberculosis, he derives his wave equation and the Psi function to explain the wave-particle duality of light and matter. Even Schrodinger is perplexed by this discovery. He cannot reconcile himself fully to the truths of quantum mechanics and spends the rest of his scientific life trying to unify it with Einstein’s Theory of General Relativity. Finally, towering over the narrative is Werner Heisenberg. He agonizes over the discrepancy between the Newtonian physics that he has learned in the university and what he is uncovering in his research into the subatomic realm. He is overcome in a semi-mystical vision and articulates the uncertainty principle. Heisenberg realized that his matrix mathematics put an end to the stable universe created by the Enlightenment in which everything is governed by rational laws of nature and observable cause and effect.

By focusing on these men (sadly, not a woman among them) of uncommon genius, Labatut vividly illustrates how the gift of deep insight drives intense scientific creativity but also agonizing psychic pain. It is as if the awareness of hidden truths is inextricably linked to human suffering. This summary may sound pedantic and unbearably heavy. Only if you enter into Labatut’s unique literary space will you appreciate the inventiveness and intelligence of this overpowering book, all 191 pages of it. It is well worth the trip.

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The Urge: Our History of Addiction

Fisher, Carl Erik

Last Updated: May-02-2022

Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The Urge: Our History of Addiction, by Carl Erik Fisher, a psychiatrist, is really two books in one. It is a comprehensive history of addiction from ancient times to the present day. It is also a memoir of the author’s own struggle with addiction and an attempt “to understand how I went from being a newly minted physician in a psychiatry residency program…to a psychiatric patient” (p.ix).

Fisher has grown up with two alcoholic parents. Even as his mother’s drinking “suppresses her blood counts and causes her to miss the chemo sessions I have worked so hard to arrange” (p. 294), she does not stop. Fisher’s own first drink, in high school, is a revelation. He blows his interview for his first-choice college when he shows up late and hung over. His intelligence enables him to get by, but eventually the problem catches up with him as he begins to use Adderall and marijuana to counteract the effects of alcohol. After sleeping through and missing his residency orientation, he is under scrutiny. Finally, he has a drug-induced manic episode that results in his being tasered by the police, and he is forced into treatment.

In the historical sequences of the book, we discover that one of the oldest known examples of addiction is found as far back as the Rig Veda (1000 BC). From there we move through time, learning how Native American populations were devastated by alcohol, how Alcoholics Anonymous achieved prominence, and about the multiple challenges that persist to the present day.

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Ward Rounds

Beernink, K. D. (Kenneth Dale)

Last Updated: Apr-25-2022

Coulehan, Jack

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

This is a collection of poems about patients, written by a young physician in the late 1960s. The book is organized around the theme of a hospital ward. Each poem is named for a patient and has the patient’s disease as its subtitle. The poet composed these poems during his own illness when, as he says in the original Introduction, “my patients reappeared to me, and I lived again in my mind all the many emotions we experienced together.” K. Dale Beernick died of chronic myelocytic leukemia at the age of 31 in 1969. In Ward Rounds he recounts his experiences as a medical student and house officer. He uses a variety of forms and techniques, including rhyme, blank verse, haiku, and even one villanelle. The poems vary in quality and impact. Among the best are "Penny Brown" (rheumatic heart disease), "Theodosus Bull" (delirium tremens), "Anonymous" (spontaneous abortion), and "Minnie Freeme" (post-necrotic cirrhosis).

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The First Wave

Heineman, Matthew

Last Updated: Apr-18-2022

Bruell , Lucy

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

First Wave documents the early days of the COVID-19 pandemic at Long Island Jewish Medical Center (LIJ) in New York from March through June of 2020. It opens with a graphic scene of a rapid response team trying to save a patient with COVID whose heart has stopped. Despite their efforts, the patient dies. After the team pauses for a minute of silence at the bedside, the grueling work of saving lives continues.

The film follows Dr. Nathalie Dougé, an internist who was born in the Bronx to Haitian parents. Most of her patients are Black, Hispanic or immigrant. Two patients with COVID are essential workers: Brussels Jabon, a Filipino nurse who undergoes an emergency C-section after she is brought to the emergency room, and Ahmed Ellis, a school safety officer with the NYPD. Both have young children and supportive families.

Nurses hold up IPads so families can Facetime with the patients. It’s terrifying and sad for the families to see the patients on screen and not to be present when they are needed the most. It’s emotionally difficult for the healthcare team as well who are the only ones to hold a patient’s hand during these encounters. One nurse describes the effect of holding the phone while family members have five minutes to Facetime with patients, “You become the family member, and it seems like you’re losing your family.”

The emotional toll of losing so many patients, while fearing that they too may contract the virus and bring it home to their own families, weighs heavily on the healthcare teams. They are trained to compartmentalize, to separate work from personal life but their empathetic response to their patients follows them home. “I think about him every night when I go home,” nurse Kelli Wunsch says of Ahmed. “I just want him to do well.”

Scene after scene of teams rushing to resuscitate a patient who has coded are interspersed with more hopeful moments of a reunion between husband and wife, the sound of the song “Here Comes the Sun” when a patient is taken off the ventilator, and the cheerful encouragement of a physical therapist working to help a patient regain enough strength and mobility to be discharged. At times the camera moves outside the confines of the hospital to the outside world: Dr. Dougé alone at home with her dog celebrating her birthday with friends over zoom, eerily empty streets during the lockdown, and families anxiously awaiting news from the hospital. We see bodies taken to refrigerated trucks and people cheering the health workers at 7pm from windows across the city.

In May, when protests erupt following George Floyd’s murder, Dr. Dougé, joins the protest with other frontline workers carrying a sign, “Racism is a Public Health Issue” and ”I Can’t Breathe” scrawled on her surgical mask. Amid the “I Can’t Breathe” cries of the protestors, she relives the myriad times she has heard her patients gasping those words to her just before they are placed on ventilators.

Both Brussel and Ahmed become stable enough to be taken off the ventilator and released from the hospital to return home to their families. Despite their recovery from the acute phase of the illness, it is clear their health remains severely compromised. As the cheers of the staff in the hospital lobby fade, tough work lies ahead for these patients and their families.

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Every Last Breath: A Memoir of Two Illnesses

Jacobson, Joanne

Last Updated: Apr-11-2022

Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Five years into writing about her mother’s slow decline from a respiratory illness, Joanne Jacobson was diagnosed with a rare, life-threatening blood disease. That discovery dissolved the illusion that she and her mother had separate fates. “How could I continue writing about my mother as though I were observing her from outside the circle of Illness?” Jacobson asks (27). She can’t. And Every Last Breath becomes, as its subtitle discloses, “A Memoir of Two Illnesses.” Doubling its concern, Jacobson’s memoir in essays becomes a richer, more urgent, and ironic revision of her original project.

With writerly attentiveness, perceptive intelligence, and some impatience, the four opening essays witness the negotiations that Florence Jacobson makes with her body, her environment, and her psyche. From a distanced perspective, Jacobson wonders at her mother’s courage and stubborn animal will to go on. Her mother’s slow pace and reluctance to let go—of her possessions, her habits, her life—initially frustrate and puzzle Jacobson. She even expresses impatience with the constant sound of her mother’s oxygen pump filling the apartment, the inconvenient bulk of the oxygen canister, the tangles of tubing connecting the machine with her mother’s nostrils.

As Jacobson’s diagnosis closes the distance she perceived between herself and her mother, it ignites the memoir’s transformative insight. It’s first articulated at the end of the essay titled “Mirror Writing” and it sustains the rest of the memoir. Realizing that her mother might outlive her, Jacobson writes: “. . . I can no longer pretend that the ragged approach of death is likely to be smoothed by nature’s grace, or by the natural order. So long as I believed I was writing about my mother, I was able to hold mortality at a distance . . . Now in the mirror of my mother’s aging face I see myself” (29). In “Dead Reckoning,” when Jacobson learns that her blood is starved for oxygen, she hears her “own lungs fall into the thrumming motor’s pulse” of her mother’s respirator. Revising her response to the technology, she writes that it is “the sound of death being pushed mechanically away that is audible to me now—steadily asserting its nearness . . .” (63-4). Jacobson’s descriptions of her hospitalizations and treatments (“Written in Blood,” “If My Disease Were an Animal”) take her on solo flights toward her new understanding of herself and the “call to the imagination” that her experience issues (59). Jacobson’s elegant and vulnerable rendering of her efforts to survive pain, uncertainty, and terrifying treatments register her own courage and will to go on.

The final essays bring the shared destinies of daughter and mother together. Jacobson thinks of them as “invisibly entwined, cellular,” as she recalls that mothers’ bodies can absorb their fetuses’ cells (88). In “Book of Names,” Jacobson’s closing essay, she and her mother read out the names in Florence’s heavily edited address book, tracking the alterations in the circumstances of those whose lives she’s shared. It invokes the lists in Genesis. Begotten. Then gone.

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