Susan Sontag has said, “Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship in the kingdom of the well and in the kingdom of the sick.” Author Lina Meruane challenges the idea that people with illnesses are necessarily separated into a different kingdom than those who are not sick, asserting instead that illness can be part of anyone’s normality. She makes this case through her novel, Nervous System. The novel tells the stories of four family members and a boyfriend who, at one time or another, develop a serious illness or help take care of one of the others with a serious illness: it’s all illness, it’s all the time, it’s normal. We talk with Dr. Meruane about her idea of illness as normality as she presented it in the novel, and about how its atypical structure and its evocative and memorable prose contribute to the stories told and the ideas offered.

Co-host

Daniel Albrant

Source
Nervous System by Lina Meruane, translated by Meghan McDowell, Graywolf Press, 2021.

Links
–Lina Meruane’s bio
–Russell Teagarden’s blog piece about the novel, Nervous System, and his blog piece about the MRI scene in the novel.
–Russell Teagarden’s blog piece about Lina Meruane’s novel, Seeing Red.
–Video conversation between Lina Meruane and Meghan McDowell about Nervous System.
–Interview with Lina Meruane in LALT magazine about Nervous System.

A big thanks to Lina Meruane for sharing her thoughts on illness as normality and her writing processes.

The Clinic & The Person is a podcast developed by our editor Russell Teagarden to summon or quicken the attention of health care professionals, their educators, researchers and others to the interests and plights of people with specific health problems aided through knowledge and perspectives the humanities provide.

Web image by Medhum.org

What makes The Magician so unique as a novel is its depiction of writing as an all-encompassing creative activity that consumes the author’s full psychic energy and that emerges out of his personal struggles as an individual. It would be impossible to affix The Magician to the back cover of all editions of Buddenbrooks or The Magic Mountain. Tóibín offers more than a page of scholarly references to help a reader gain background knowledge about Mann, his life, and the times. But if you are interested in what it might have been like for Thomas Mann to compose these monumental works, Tóibín’s book might offer the best entry point into Mann’s artistic mind and his creative persona.  

The novel covers the full panorama of Mann’s life, from his somewhat pampered childhood in Lübeck, Germany, to his final years spent in the German expatriate community of Los Angeles. The writer’s camera is laser focused on ground level details and refuses to zoom out to the big picture and lose its granular tone. The texture of the bourgeois lifestyle of the Mann family is captured in all its minutia including rowdy family meals, community engagements, and professional insults. One can almost feel the temperature rise and the climate change as Mann and his family move from Munich to Princeton and finally to Pacific Palisades. Mann exerted very tight control over his daily routine and one senses his absence on the page as he withdraws to his private study every morning after breakfast to write without any interruptions. We are excluded from this sanctuary just like his wife and children as they waited for him to emerge after lunch for his afternoon walk and some playtime with them.

Mann was more than a prominent novelist. He was a winner of the Nobel Prize in Literature in 1929, globally recognized and one of the most famous personalities of his time. He hobnobbed with dignitaries and the leading figures of the pre-World War II era, including Einstein and FDR. They parade across the pages of the novel with all their foibles and idiosyncrasies. Tóibín details Mann’s tempestuous relationship with Agnes Meyer, a leading figure in high society along the New York-Washington DC corridor. I had to look her up to learn that she was a well-known journalist and civil right activist and Katherine Graham’s mother to appreciate her impact on the world during the 1930s and 40s. 

The most striking feature of the book is the intimate recounting of Mann’s tortured struggles with his sexual orientation, which infiltrated his fiction from the very beginning of his career. He never denied his homoerotic longings and Tóibín delicately describes the many occasions during his long life when Mann was overwhelmed with desire for a particular man and his secretive attempts to act on his cravings. But he was a man of his era and was forced to submerge his identity as a gay man most of the time. The emotional cost of a life lived closeted on the one hand, and as the married father of six children on the other, is readily apparent. Reading The Magician motivated me to reread Death in Venice and made me realize the courage it must have taken for Mann to portray Aschenbach’s tragic story in such complex but precise prose, to reify his own emotional turmoil without sanctimony or defensiveness. Tóibín’s prose is the ideal conduit to channel the roiling interface between the Mann of the larger world and the inner literary mind of a flesh and bones historical human being. 

The Magician is an engrossing reading experience that also has special salience for followers of the MedHum website, which explores the role of the individual in a changing society. A key element that drives the narrative forward is Mann’s engagement with the political developments in Germany over the long period spanning from the lead-in to World War I, to the outbreak of hostilities in August 1914 and again in September 1939 and the devastating war years, and ending with the rebuilding of his native country. At the start, Mann saw himself as heir to a tradition of German intellectual excellence and nobility. He took great pride in his country and patriotically defended the decision to go to war against France, Britain, and Russia in August 1914. However, he recognized the dangers posed by the Nazi seizure of power and openly decried the degradation of public life. Mann felt the Nazi destruction of the German cultural heritage as a personal betrayal. Mann recognized early on the brutality of the antisemitic legislation and the attacks on his Jewish colleagues. He was forced to weigh loyalty to country against the defense of universal humanistic principles and he struggled to find a path forward between these competing ideals.  

As Hitler rose to power, were Mann’s instincts right that this would bring calamity to Germany, or should he have had trust in his fellow citizens that things would right themselves? How much could Mann rely on his interpretation of unfolding political events and his prediction of what the future would look like? Once the Nazis consolidated their dictatorial control of the Reich and set out on a course for total war and extermination of the Jews, should Mann have been a strident and outspoken opponent of the regime or should he have worked more discreetly behind the scenes? Should he have remained in Germany and risked his own life and the safety of his family, especially his wife’s Jewish relatives, or sought refuge in America, where he could serve as a champion of cultural enlightenment and world peace? How does one weigh the facts and decide on an effective course of moral action? How does one choose among imperfect options? 

Like all of us, Mann was forced to anticipate events and make painful decisions—decisions that would play out over time and have consequences for others– in real time and with only partial or inaccurate data. Much like the case with physicians and other health care professionals, most of these decisions will work out well, some will be imperfect, and a few will even be wrong. Tóibín’s novel, history as fiction, vividly illustrates the human predicament of living while moving forward with uncertainty and anxiety because full clarity only comes in retrospect — something that doctors understand because they experience it nearly every day in encounters with their patients.  

The Magician – Reading by Colm Tóibín & Conversation with Friedhelm Marx at the Thomas Mann House 

The Magician: A Novel 
Colm Tóibín 
New York: Scribner, 2021, 512 pages  

Photo of Thomas Mann generated from Wikicommon Photos

The narrator has enjoyed a mostly healthy life. He has traveled to Europe and once was treated for syphilis while there. He has been together with L for seven years. Both men are writers who teach at the university. Now, the pain that grips him defies exact description (even for a professional writer). The closest comparison that he can conjure is having someone’s hand plunge into his body and twist his guts along with the sensation of being kneed in the groin. He’s reluctant to seek medical attention since medical facilities are especially risky during the pandemic. So he waits and hurts. The pain is soon accompanied by fever, chills, and aching of the limbs. 

He decides to go to urgent care. After a brief evaluation, he’s referred to the university medical center ER. Covid testing is negative. A CT scan reveals an aortic dissection (tear in the aorta) associated with aortitis (an inflammation of this large blood vessel). He is told that such a tear is frequently fatal. He’s lucky to be alive. The narrator is placed in the ICU and treated with IV antibiotics, fluids, and antihypertensive medications. The vascular surgeon recommends holding off on any operation (either a stent or a graft), hoping the tear and inflammation will stabilize and heal. 

Hospitalized for a week and a half, the narrator confesses his feelings of helplessness, shame, bewilderment, and fear. He is intrigued by the bustle of the hospital – almost electric with human energy – but despondent over the seemingly omnipresent suffering there – his own, that of fellow patients, and even the distress of healthcare workers. He is most impressed by and appreciative of his ICU nurse, Alivia. As for the physicians involved in his care, the narrator notes the stark clinical detachment of many doctors. Reflecting on a visit from a rheumatologist, he concludes, “I was nothing to her, really, I was her job, she would clock out and enter her real life” (p124). He craves to sense some vulnerability and genuine concern emanating from his physicians. As for empathy, the narrator reveals some of his own when he decides, “it must be hell to be a resident” (p129) in training. 

The search for possible rare etiologies of his condition comes up empty. As his condition slowly improves, the narrator still worries about his current predicament and the future: “I was an enigma, they said, a conundrum, they were running out of ideas” (p121). The waiting for and indecision about any kind of surgical intervention wears on him. He wonders if it might be best to have an operation. 

But the narrator never has surgery. A repeat CT scan confirms stability of the aorta and resolution of all inflammation. He is discharged home on oral medicines and continued IV antibiotics. Frequent follow-up appointments with his doctors and imaging studies of his aorta are scheduled. His partner L lovingly tends to his needs. His sister G arrives to help too. The narrator’s prognosis is murky. Did he dodge a bullet? Or are further problems with his aorta inevitable? How does a person cope with such chronic uncertainty. Although the narrator is weak and emotionally rattled, he is happy to be alive, pain-free, ambulatory, and home with his lover. Shouldn’t that be enough? 

The novel reads more like a memoir than a work of fiction. It is impressively authentic and accurate about medical matters – the lingo and professional behavior of physicians, nursing care, clinical procedures, what it feels like to be a patient. Readers will rightfully consider whether the book’s author is perhaps recounting his own experience with a serious health problem.  

In this novel, the human body is depicted in many ways: sensuous, serviceable, surrendered to others, surreal when sick. The narrator’s experience of illness includes a warping of time, the pull of memory, the weight of regret, the need for truth, and the magic of love.  

The poet-protagonist is occasionally irritated by the language and metaphors spewed by doctors and nurses. The use of broad-spectrum antibiotics is explained to him as a “carpet bomb approach.” He is warned about the caustic effect of IV drugs and that his veins might “burn out.” This medical lexicon prompts the narrator to ponder “who taught these people, who gave them their vocabulary, their stock of images” (p86).  

We don’t need a novel (even an exceptional one like Small Rain) to remind us about the randomness and chaos of ordinary life, the uncertainty of health in the future. But we can look to great literature for inspiration, to help us understand and cope with those looming, difficult experiences. The word rain is both a noun (drops of moisture or a spiritual blessing) and a verb (something sent down in abundance). Whether it is tears (of pain and emotion), love, or gratitude, the rain in this story is hardly small.  

Small Rain: A Novel 
by Garth Greenwell 
New York: Farrar, Straus and Giroux, 2024, 320 pages 
ISBN 9780374279547 
Web photo by Pawel Nolbert 

A Memoir at the End of Sight

Andrew Leland has been losing his vision since high school, slowly, but definitively. The cause is retinitis pigmentosa (RP), a group of eye diseases affecting light-sensitive cells in the retina, the rods and cones particularly. People with RP often first notice problems with seeing at night, later their peripheral vision narrows progressing to blurred images making reading impossible and moving unaided hazardous. RP often manifests in childhood or adolescence and progresses at varying rates—including into old age—before legal or total blindness is reached. Leland wrote this book while early into his fifth decade, more than twenty years since his RP diagnosis, and after he qualified as legally blind.  

The book is classified as a memoir, and while it has the elements of a memoir, Leland crosses seamlessly into other genres, such as history, philosophy, political science, and long-form journalism. As much as he had a professional interest in telling his story as a writer, editor, and podcaster, he was motivated as a person in the midst of losing vision and wondering what might be ahead of him.

As a consequence of his investigations, Leland sees that the “book isn’t merely the account of my own experience of vision loss…it’s the chronicle of an intentional journey I took into the greater world of blindness.” (p. xvi-xvii) 

Across three sections, bookended by an introduction and a conclusion, Leland plunges into the country of the blind, which for him is a “teeming variety of their stories of struggle, adaptation, and adventure” (p. xxv).  He visits his eye doctors; advocacy organizations for the blind; disability advocates; and blind writers, artists, educators, entrepreneurs, and technology developers. He attends conferences and enrolls in training programs. He tries out various assist technologies, and learns how to use screen readers, braille, and collapsible canes. He researches the history and politics of government and nongovernment support for the blind, and the history and politics of research initiatives. He wonders about how life with his wife and son might change. He looks to literature, poetry, art, and philosophy to find his place in a world he is losing earthly sight of. It’s liminal, it’s ambiguous, it’s uncertain…it’s ok.  

Leland’s title, The Country of the Blind, is taken from and the H.G. Wells short story of the same name, and from the proverb, “In the Country of the Blind, the One-Eyed Man is King.” In most interpretations, it serves as a warning to those who come into an environment in which they believe their superior traits will afford them a dominate place, only to find it is they who are at a disadvantage. Leland’s use of the story seems directed at establishing a platonic ideal for blindness. All the inhabitants in Wells’ country are blind and have been for fifteen generations. When a sighted man, Nunez, finds himself in the country of the blind, he encounters a civilization that has evolved past the need for sight or even the conception of sight; if this population has disabilities, they are not related to sightlessness. Nunez’s sight, in fact, brings him disadvantages and disabilities, not his expected reign as king.

Leland wants to approach this platonic ideal, but not fully attain it. His hope is that blindness becomes “merely a characteristic,” as it is in Wells’ County, but that saying blindness is not a disability goes too far. In his formulation, he would be “perfectly capable and independent” with “alternative techniques” various assist technologies offer (p. 236). But, not to the extent where Ray Kurzweil’s prediction of how, 

Towards that end, Leland describes how he has “been searching for blind mentors, people who in their inhabiting of blindness make it seem not just like something that can be overcome, but like something that’s intellectually productive, interesting, even cool.” Leland finds, however, counterintuitively to his way of thinking, 

He will have to fight his way to achieve the balance he seeks. And he seems up for the challenge  even though he says his “inclination is to just put my head down and barrel into blindness becoming proficient in all of the skills it requires and then moving on with my life” (p. xxii). 

As a man of letters, and as a writer, Leland tells of seeking mentors from among important writers and artists who were also challenged with varying degrees of blindness. Among them is Jorge Luis Borges, who apparently influenced Leland’s ideal about blindness, writing “It should not be seen in a pathetic way. It should be seen as a way of life: one of the styles of living” (p. 162).  From other blind writers, and from James Joyce especially, he learns that their writing became more “aural (and oral)”, and he quotes Samuel Becket’s remarks about a particular James Joyce novel that “it is to be looked at and listened to” (p. 134).  Joyce also contributed to Leland’s ideal, “What the eyes bring is nothing. I have a hundred worlds to create, I am losing only one of them” (p. 288). Leland might get his steeliness from John Milton whom he quotes responding to a charge that his blindness could function as a metaphor for “gaps in his reasoning,” 

Others he turns to are Cicero, Sophocles, Homer, and Shakespeare. 

Leland’s liminal, ambiguous, and uncertain state is a source of frustration, but one he strives to accommodate: “Living in this weird shadowy landscape between blindness and sight has forced me to reckon with this, and to try to let go of my desperate desire for resolution” (p. xxii). He finds Beckett’s play, Endgame, helpful in its acknowledgement of this predicament.

Leland does not spare the health care system from any critiques, most of which are among those commonly heard. He expresses frustration around the inconsistencies in what he is told about the rate of deterioration in his eyesight he can expect. He notes that much rides on the accuracy of this rate. He also notes the frequency with which his physicians reference “the incredible work occurring in clinical trials,” giving him the sense that “the field seems to be in a permanent state of promising development,” but that he is “resigned to the fact that if this promise is ever realized, it will be long after it’s of any use to me” (p. 201). 

Nevertheless, Leland is a happy warrior. As far as he’s concerned, “reading braille is marvelous, and blindness opens up interesting hermeneutic and epistemological questions that I could spend the rest of my life exploring. A full and joyous blind life is indeed possible” (p. 215). He will go about his country without fear of a one-eyed king.

The Country of the Blind: A Memoir at the End of Sight
Andrew Leland
New York
Penguin Press
2023
339 pages

The Clinic & The Person is a podcast developed by our editor Russell Teagarden to summon or quicken the attention of health care professionals, their educators, researchers and others to the interests and plights of people with specific health problems aided through knowledge and perspectives the humanities provide.

Photo by Nathan Dumlao