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

Attending plays is not always just a passive experience. Through various means playwrights, producers, composers, choreographers, set designers, and others have available to them, they can make plays immersive and interactive for audiences. A good example, among many, is Florian Zeller’s play, The Father. 

The Father is the story of an older man with Alzheimer’s disease (André) and his progression through first living on his own, then living with his daughter (Anne), and finally living in a nursing home. Or, is it? It’s hard to tell, and that is the intention of the playwright, Florian Zeller, who in a 2021 interview with Forbes Magazine,* said his aim was, 

to tell the story from the inside and put the audience in a unique position as though they were going through a labyrinth—questioning everything they’re seeing. It also was a way for me to play with the idea of disorientation because I not only wanted The Father to be a story but also an experience. The experience being what it’s like to lose everything, including your own bearings as a viewer and to be uncertain of what is and isn’t real. It was a way for the audience to experience a slice of dementia.

The director, Doug Hughes, creates the audience experience through an interplay among set designs, lighting effects, repeated scene sequences, and time loops as circumstances for various behaviors like memory loss, paranoia, anger, and lasciviousness. All the scenes take place in one room that serves at different times as André’s flat, Anne’s flat, and André’s nursing home room. The furnishings of the room change based on the supposed setting, but the walls are exactly the same for all of them. In different scenes, André is not always sure where he is, and neither is the audience.  

Early in the play, André hears Anne tell him she’s relocating from Paris to London with her lover, but she is present to him in most of the scenes thereafter and until the end of the play when he’s told by a nurse that Anne had moved to London some time ago. Had she really left Paris and was never actually there in all those other scenes? He wonders and so does the audience. In other scenes, the way characters from the past and present enter and exit distorts time for André, and so while audience members know the linear trajectory of the disease course, they can’t be sure of where they are in that course during a given scene. With the last scene taking place in André’s nursing home room with the same walls seen in his flat and Anne’s flat, the audience can’t be faulted for wondering whether all that came before was just one of André’s hallucinations. 

The Disorienting Is Clarifying

If the play had been staged as the customary audience view of outside looking in, the audience would have merely witnessed the familiar manifestations of Alzheimer’s disease and a familiar progression of events. This view would have afforded a new appreciation for the trauma it causes to those who are not closely acquainted with the symptoms of Alzheimer’s, while those who are familiar with them could possibly achieve a measure of catharsis. Zeller endeavors to do much more by offering a view of Alzheimer’s from the inside looking out and a means to grasp the actual experience of it. He is successful when audience members find themselves working as hard as André is to discern fact from fiction, past from present, and here from there.   

This can be no easy feat for the stage, and no wonder then that the Broadway production team enlisted an “illusion consultant” (Jim Steinmeyer) and a medical advisor (Dr. Randi Diamond). The intimate experiences the actor playing André (Frank Langella) and the director (Doug Hughes) have had with Alzheimer’s disease through family members no doubt contributed to the production’s authenticity as well.  

Zeller doesn’t leave the audience members defenseless in their efforts to orient themselves. He associates André’s grasp of his own situation with the whereabouts of his watch: “I need to know exactly where I am during the day. I’ve always had this watch, you know. If I were to lose it, I’d never recover.” As André’s dementia progresses and his powers of perception weaken, we see fewer objects in Anne’s flat. In the end, Zeller is hoping that confusing and disorienting the audience members will clarify the dementia experience for them.

Notes:
*Dawson A. Florian Zeller takes viewers into the labyrinth of dementia with The Father. Forbes. March 30, 2021.
This essay is based on a live performance of The Father presented by the Manhattan Theater Club at the Samuel J. Friedman Theater in New York City that ran between April and June of 2016. 
Translated from French by Christopher Hampton.
Brain photo:  Processing language, left brain hemisphere (sagittal view). Stephanie Forkel, NatBrainLab. Source: Wellcome Collection
License: Attribution 4.0 International (CC BY 4.0)
Watch photo from Wikicommons images and licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license.

Esther, daughter of a native healer who has some familiarity with and respect for Western medicine, envies and longs for Antonia’s Western training and attaches herself to her as a disciple. In her encounters with patients, Esther finds that she has an inexplicable gift for healing which baffles her as well as Antonia and complicates their already tenuous relationship. Esther’s gift forces Antonia to reexamine some of her most basic assumptions about what constitutes healing. 

The novel raises complex questions about the cultural, religious, and institutional contexts of medicine in a delicately drawn portrayal of relationships among characters whose divergent frames of reference complicate trust and understanding. One of the questions the novel addresses is not only how to heal the body, but how to heal the breach between cultures. In the development of the friendship between the American doctor and the African healer these questions are worked out in concrete particulars that fully honor both the pain and the hope involved in authentic cross-cultural dialogue. 

Antonia Saw the Oryx First
Maria Thomas 
Soho Press, New York 2007: 296 pages 

A previous version of this review was published in the NYU Literature, Arts, and Medicine Database.  
Web image by medhum.org.

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Egon devotedly cares for his sick wife despite her warning, “You will get it from me” (p111). Soon she is unresponsive. As Egon listens for a heartbeat with his ear against Edi’s motionless chest, he can only auscultate the distant, faint beat of his unborn child’s heart that is quickly silent. He tragically describes Edi’s corpse: “Her body being both cradle and coffin, within a minute” (p128). Egon feels compelled to make multiple sketches of his dead wife. 

Before long, Egon experiences harsh bouts of coughing, fever, and chills. He becomes remorseful about the drawings he made of Edi and burns them in the kitchen stove. Egon gazes at the fire, knowing he too will die shortly but aware that he will be survived by all his other artwork. 

This short story imagines the final days of Austrian painter Egon Schiele and his pregnant wife Edith. He died at age 28, just three days after she passed away, both victims of the 1918 influenza pandemic. 

A stunning and sorrowful re-creation of what the end of life might have felt like for a young husband and his expectant wife during the 1918 pandemic. The tale highlights the risk of love, the inescapable weight of dread, and the connection between creativity and illness. 

Primary Source 
Blank Pages and Other Stories (pp105-138) 

Publisher 
W.W. Norton & Company, New York, 2022: 34 pages 
A previous version of this review was published in the NYU Literature, Arts, and Medicine Database.
Web image by Medhum.org

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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”) sharply observe 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 courage and will to go on.  

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

Every Last Breath should be read. Its profound and startling reflections on mortality are lyrical, fierce, and deeply felt. At times readers take extravagantly metaphorical flights of the imagination. At times we’re immersed in revelatory scientific facts about the natural world and our human biology. This slender book melts other boundaries as well: between caregiver and patient, mother and daughter, self and other, personal and universal. It simultaneously challenges literary classifications, blending poetry, essay, and memoir. Read separately or together—either way can be satisfying—Jacobson’s brilliant essays refuse to let us ignore our shared vulnerability or the unpredictability of living in a body, as Jacobson once naively thought she could. 

Every Last Breath–A Memoir of Two Illnesses
Joanne Jacobson 
The University of Utah Press, 2020; 114 pages 
https://uofupress.com/books/every-last-breath/

A previous version of this review was published in the NYU Literature, Arts, and Medicine Database. 
Web image created by Medhum.org

Jay Baruch offers readers a series of multi-layered stories focusing on caregivers–both professionals (doctors and nurses primarily), family members, and those they are trying to care for. The setting for a number of the stories (and therefore a number of the characters) is from the working class. Another group of stories is written from the perspective of medical students, residents, or physicians early in their training. In all the stories, the characters’ lives are full of conflict. The language they use to express themselves is raw and direct. There are no simple solutions to their problems. Yet struggle on do these characters, testing the limits of their compassion and abilities to deliver care at least competently. 

First published in 2007 by Kent State University Press, Baruch’s book was a powerful new voice in the growing field of young physician-writers. Dr. Baruch is a Professor of Emergency Medicine at the Alpert Medical School at Brown University, where he serves as Director of the Medical Humanities and Bioethics Scholarly Concentration. Many of the works here revolve around specific ethical issues that health care workers and families face trying to care for patients, which make this collection useful for health care ethics courses. A well-crafted essay about writing from the Emergency Department is included as an Afterword. 

A previous version of this review was published in the NYU Literature, Arts and Medicine Database 
Web image created by Medhum.org

After eighteen years of clinical practice, I think I’ve looked after somewhere between four and five thousand patients in total. Some patients I meet only a handful of times. Others I know like extended family. There are all types of patients: pleasant ones, well-behaved ones, as well as difficult ones that try my patience and of course, some that I’d rather forget.

Of course, most of my patients are Chinese immigrants and immigrating is a difficult business, not something to be undertaken by the faint of heart. New home. Often a new language. Usually a whole new culture. The immigrant experience means uprooting a person or a family from all that they are comfortable with and placing them in a strange and unfamiliar setting.

If being an immigrant is hard, then being an immigrant as a senior citizen is even harder. Try learning English for the first time when you’re in your sixties and seventies. Try going to the bank or dealing with a leaky faucet when you are a stranger in a foreign land. And yet, I’ve seen countless examples over the years of Chinese seniors starting over in Canada somewhere in their sixth or seventh decades. I often wonder. What is it that makes them want to start over yet again in their life? Is it simply that they want to be closer to their children and grandchildren who’ve come to Canada? Is there nobody left back in their home country? Do they really know what they are in for? Can anyone really be prepared for it?

In my own family, I’ve seen this process of elderly immigrants play out firsthand. Both of my grandmothers spent portions of their later years living with my parents in Toronto, with varying degrees of success. Through them, I witnessed just how difficult it could be to be an elderly Chinese immigrant in Toronto, which is probably, with its enormous Chinese population, already one of the most Chinese-friendly cities in the world outside of Asia. 

In Taipei, my grandmothers could walk outside in the mornings and bring back fresh produce and noodles from the market down the street in their respective neighborhoods. Never mind that the produce in the Food City and Miracle Food Mart of my childhood was nowhere near as a fresh or tasty as the food culled on the subtropical island of Taiwan: in Toronto, our family lived in the suburbs of Scarborough, and later North York, so my grandmothers could only visit a store if my father was free on the weekends to drive them.

Of course, my grandmothers couldn’t read or speak much English. In the era before cellular phones and Google maps, my parents taught them to navigate the Toronto subway system by memorizing the pattern of the coloured tiles at the individual subway stations, back when the city made a point of individualizing each station’s appearance. Dundas Station meant yellow coloured tiles. This was important because this way my grandmother knew which spot to get off if she wanted to find Chinatown.

My maternal grandmother abhorred Canada. Her complaints were plentiful: the produce didn’t taste fresh, the winter weather was too cold, it was too difficult to go places without a car and the language barrier was insurmountable. Ultimately, nothing about life here was as easy or as convenient for her as life in Taipei. At some point, she actually learned enough English to pass her Canadian citizenship exam. But years later, she defiantly informed me that she had returned all that knowledge back to her teachers. She had forgotten it all.

My paternal grandmother didn’t voice her complaints about Canada as much. Whether it was because she was more content, or simply because she tended to keep more to herself, I’m not sure what she ultimately thought about being a Chinese immigrant. But watching from afar as she spent the long months from spring to fall in our house (she always returned to Taiwan before it got too cold), living with my mom while my father was mostly out of the house, I couldn’t help but surmise that things weren’t really that easy. She didn’t learn much English, and save for her morning walk around the neighbourhood, she rarely ventured outside the house, preferring instead to spend most of her days watching satellite television from Taiwan. Living with grandchildren you don’t know very well, a son who is usually at work, and making nice with your daughter-in-law on a regular basis; this was another form of the Chinese Canadian immigrant experience.

This phenomenon, that of the frustrated elderly immigrant, is one that I’ve seen countless times in my medical practice. Flummoxed by a language they don’t understand, struggling to live under the roof of a son or daughter-in-law that they aren’t completely in sync with, and often tasked with the thankless job of babysitting little grandchildren for no pay, the immigrant elderly experience is fraught with trials and tribulations. And that is before real crises hit the family: a car accident, or a health situation, or worse. Crises are difficult enough when you are surrounded by your social safety net of familiar family and friends. But now, imagine being in an unfamiliar country when life unloads a crisis as it is wont to do. The examples are endless, but the end result is the same. Frustration, resentment, and ultimately regret. Why did we ever bother to come here?

Over the years, I’ve seen versions of it all. Disinterested adult children chauffeuring their elderly parents to doctor appointments, and those children then falling asleep in the chairs while their parents are describing their symptoms next to them. Other times, I’ve seen seniors get chastised verbally by their children when they try to ask me one question too many. I’ve treated elderly patients who got into physical altercations with their son-in-laws. And it goes both ways too: I’ve seen adult children come to me to request Prozac knowing that their mother-in-law will be arriving a month from now.

When I sat down to write this piece about elderly immigrants, I thought about which of my patients I really wanted to know more about. One couple, the Chens, immediately leapt into my mind. I’ve changed their names here to protect their privacy. 

On the surface, there’s nothing special about them. They’re an elderly Chinese couple, living in Toronto while their children live elsewhere. They aren’t particularly well off, and they spend their retirement doing typical Chinese immigrant senior citizen things: attending doctor visits, taking classes at the community centre, and so forth.

But dig past the surface, and they are unique. They’ve been married for over sixty years, and they are quite possibly the happiest, most resilient seniors I know. When things happen to them that would certainly derail others, they laugh about it, avoid blaming others and then move on. I’ve seen it happen in my office many times.

A few years back, Mr. Chen was struck by a car while crossing the street as a pedestrian, injuring his shoulder. For many patients, this would be a cue for initiating legal proceedings and a demand for compensation, as well as an endless stream of doctor visits and requests for pain medications. How did Mr. Chen handle it? He laughed it off, dismissed my question about “who was at fault” in the accident and recovered within a few months while doing some exercises with a physiotherapist.

Not too long after that, Mrs. Chen was found to have a slowly growing brain tumour. For many patients, this would be cause for anxiety, angst and even hysteria. But for Mrs. Chen, it was just another fact of life. She decided that in her mid-eighties, she didn’t need to risk surgery, and she’d continue to live day by day, even though the neurosurgeons thought that a more aggressive approach might improve her mortality and her quality of life, especially if her vision were to decline further. But they didn’t take into account that she was already fine with her quality of life and didn’t see the need to potentially upend things with surgical complications. Now, three years later, she’s remained the same, happy, laughing patient, who always makes a point to end our visits with a “good bye“ or ”thank you very much,” spoken in English that she learned in her English as a Second Language class.

Actually, I’ll correct what I said earlier. The Chens aren’t just the happiest seniors I know. They are quite possibly the happiest, most well-balanced people I know. What is the secret sauce of their happiness? That’s what I set out to find out. And that’s what I explained to them when I brought them into my office to be interviewed a few weeks ago.

This is their story.

The first thing to point out is that neither Mr. nor Mrs. Chen’s life was easy. If we suspected that part of the magic sauce of resilience is the ability to live a peacefully blissful existence in a Garden of Eden type environment, the Chens’ lives, dating back to their childhood, shows that this is not the case.

Mr. Chen was born in a small town in the province of Shanxi, in Northern China in 1937. At that time, China was at war, trying to stave off Japanese occupation, and so he grew up in an environment where war and violence were everywhere. In fact, the Japanese began bombing his town of Qixian three days before he was born. As a child, he watched as soldiers of all the different warring sides-the Communist People’s Liberation Army, the Nationalist Kuomintang, and the Japanese—took turns filing through the town’s lone major road. His father was a businessman who later made a name for himself selling tea and often had to travel. Mr. Chen remembered that for some years, he would see his father only once a year. Fortunately, their family avoided major mishaps during the war years, but he remembers seeing body bags piled up by the side of the road. When World War II ended and the occupation by Japan ended, he recalled seeing people dancing in the streets.

Meanwhile, Mrs. Chen was born in 1938 in Tianjin in Northern China, one out of four children. Her father was a businessman, and her mother was a housewife. During the war years, her family moved regularly, living at different times in Sichuan, then Nanjing, and finally in Shanghai.

She had some recollection of planes flying overhead while she lived in Shanghai, and that her mother didn’t want her to attend school for fear of violence. But for the most part though, she didn’t see much of the violence of war firsthand.

Of course, the cycle of war in China didn’t end when the Japanese occupation ended. After the Japanese departed, the Chinese Civil War between the communists and the Kuomintang promptly resumed and only ended with the Communist Party victorious in 1949.

By liberation day of that year, Mr. Chen’s father had moved the family to Beijing. He was now a sixth grade student and heard the horns and sirens announcing the liberation of China. 

He would go on to continue his education in Beijing, and it was here that he witnessed the Chinese Cultural Revolution taking place. He was a university student in Beijing by the time the Cultural Revolution reached full swing, but he kept his nose out of politics and was not much directly affected. By now, there were no more actual classes in university. As engineering students, they spent time working in factories. He even recalled how during the Great Leap Forward, the students busied themselves with trying to figure out how to make iron into steel at Mao Zedong’s behest.

Meanwhile, Mrs. Chen had studied to become a mechanical engineer. She was one of only three women studying computers at her university, Tianda in 1960. She went on to study in an engineering school and then became a professor from 1961 until her retirement in 1998, at the age of 60.

Spread out over almost two decades, the Chinese Cultural Revolution under Mao Zedong marked the complete upending of all societal norms. Scholars were vilified. Universities were closed. Anyone with links to bourgeois thinking or a questionable family background was blacklisted. Countless people lost their lives and countless more lost their livelihoods.

Mr. and Mrs. Chen’s experience through the Cultural Revolution was notable mostly in that they managed to remain apolitical. Academics came under siege during the Mao era, and intellectuals were frequent targets of Mao’s reforms. They knew that it was better to avoid political conflict than to get into the heat of it.

When asked how he managed to survive this, he admits that he wasn’t that bothered by the political crises that surrounded them. He learned mostly to keep his mouth shut and keep out of trouble.

Mrs. Chen, meanwhile, became a scribe during meetings during the Cultural Revolution. In fact, she points out that her propensity for smiling and laughter showed up even here, as people identified her during these meetings as the “one who was always giggling.” On a more serious note, she remembers colleagues of hers who died during the years of infighting, but like her husband, she avoided most political issues herself.

Of course, all my elderly patients from China are survivors of the Cultural Revolution in one way, shape or form. And of course, there is a survivorship bias here. I’m talking to survivors, those who not only lived through it, but those who lived through China’s gradual rebuild, through Tiananmen Square, through Deng Xiaoping, and now live through to be able to tell their tales as Chinese Canadian immigrants.

Of course, while China was engulfed by these years of political upheaval, the Chens moved on with their personal lives. They had already met as university students but really got to know each other better in their final year of university. They ended up matching positions in Beijing together in 1962 and have been together ever since.

The Chens have two daughters, both of whom are now successful computer engineers with graduate degrees from prestigious North American universities. Their grandchildren are also studying to become engineers as well.

When her children were small, the Chens were busy as young academics. They were fortunate that Mrs. Chen’s hours weren’t long. She only taught two to three classes a week. Furthermore, the university had a kindergarten on site, and her mother came to help look after the grandchildren so that they could continue to work.

When asked about parenting tips, Mrs. Chen points out that they’ve been asked this very question many times by their friends over the years: “Your daughters are both so successful. However did you manage to inspire them?” 

Mrs. Chen tells me that she believes in parenting by example. She and her husband were both academics, so books were always plentiful in the house, and the parents could always be found reading. So, in time, the children saw them doing this and became intellectually curious themselves. “Don’t yell and berate,” she informs me. “That style of parenting doesn’t work anyways.”

What is unique about Mr. and Mrs. Chen’s immigration story is that while they have lived in Toronto for more than fifteen years, their two daughters have never lived here. This was a result of curious circumstances, but of particular relevance to our discussion.

When they first decided to come to North America to be closer to their children, one of their daughters was still studying in Manitoba and the other was on Long Island. Toronto, they reasoned, was roughly equidistant between Long Island and Winnipeg, and so they settled here.

A few years in though, their daughter in Manitoba married a Dutch husband, and before long, she had relocated to Holland to be closer to his family. This meant that the Chens would no longer be equidistant between the two daughters.

Still, rather than hinder their immigration experience, the fact that neither of their children are nearby seems to have strengthened their immigrant experience and actually gets to the root of how the Chens have thrived in Toronto. The Chens have never been reliant on their children. They made a point on arriving in Canada, to seek out the local LINC (Language Instruction for Newcomers to Canada) program, and began attending English classes on a regular basis. With no children to take them around, they’ve learned to make use of public transit. She tells me about how many of her fellow seniors at the community centre are reliant on their children to get around in Toronto. “They’re miserable,” she says. “They can’t do anything without their children.”

In my experience, many Chinese immigrants, even younger ones, pay only lip service to these offerings. With the influx of Chinese immigrants to Canada, it is possible to carry on a passable existence here and almost never speak English. But the passable existence has limits. You can rely on using exclusively Chinese-speaking service providers only so much, and there’s certainly a limit to how much patience your own children will have for acting as your translators.

The Chens moved into an apartment building near a bustling shopping centre, replete with a neighbouring Chinese grocery store and a large population of Chinese seniors. This is a far cry from other seniors like my own grandparents, who often end up living with their children in the suburbs, trapped on suburban streets where the nearest community centre or grocery store can’t easily be accessed except by cars which they cannot drive.

Through their English classes, the Chens became connected to various local Chinese community groups. Mrs. Chen proudly recalls that this was where she was introduced to me, having been informed that there was a local family physician who spoke Mandarin and was accepting new patients.

When asked what her overall sense of her immigrant journey is, Mrs. Chen tells me that she is most grateful for how she is treated by people in the Canadian service industries. A case in point: earlier in the week prior to our interview, she had received a notification of an error in her tax return from Revenue Canada. She took it upon herself to call Revenue Canada herself, and explained to me that in Canada, if she tells the agent on the other end of the line that her English isn’t very good, the person will invariably slow down and cheerfully take their time helping answer her questions. She says that this is a level of personal attention that simply doesn’t exist in China and is one of the things she is most grateful for here.

I think back to my own experiences dealing with the service industry, from my cellular provider to Revenue Canada. I’ve experienced many feelings when dealing with these people, but gratitude has never been near the top of the list.

These days, when the Chens visit their children in the US or in Holland, things are pleasant. Both of their daughters married foreigners. One of their son-in laws is Dutch and the other is American. They describe their son-in laws as both being extra polite, and extremely attentive to their daughter’s needs. But of course they would describe them this way. It only makes sense for such a happy couple to be able to get along just fine with their son-in-laws.

After sitting and talking to the Chens, I took away several ideas from their story. It seems that a stressful childhood environment does not preclude being happy and balanced as an adult. 

But the most remarkable trait of this amazing couple that I have learned is their willingness to adopt a growth mindset. I wonder who taught them this? Certainly, they grew up long before terms like growth and fixed mindsets became common parlance. I wonder if this comes from their background as educators. How else can I explain their willingness to come to Toronto, a country in a strange land where they had no existing family members? How else can I understand their enthusiasm for learning English at an age when many elderly are convinced that an old dog can no longer learn new tricks?

From this growth mindset, comes the steadfast determination to look after themselves and remain independent from their children. They know they can look after themselves, and their children know it too. In this day and age of complicated intra-family dynamics, when the best-selling psychology book on Amazon is titled Children of Emotionally Immature Parents, I realize the Chens have somehow figured all this out and they didn’t need a self-help book to do it.

We model ourselves, whether consciously or not on the people around us. When I was younger, I imagined that my life as a senior probably would mean living like my grandmothers: a lot of sitting around, imbibing television shows while grumbling about how nothing is quite as good as it was in the good old days. But then I think about the Chens, and it makes me realize that we’re never really too old to reinvent ourselves, or too old to move to a new country, or even too old to learn a new language. All is possible, as long as we remember to smile and laugh.

Web image by  Li Lin.

Additional Chapters from A Chinese City Doctor’s Notebook

When Your Body Isn’t Yours 

01.12.26 571

From Tigers to Otaku

09.16.25 1389

The Happiest Couple

07.28.25 1165

The Things We Don’t Talk About When We Talk About Dying 

05.13.25 1747

One Patient, Two Systems 

02.24.25 2383

In my four years of Canadian medical school, I can only remember being taught four clinical pearls specific to Chinese patients. The first two were epidemiological facts: Hepatitis B is endemic in China and Chinese people have a higher incidence of nasopharyngeal carcinoma than non-Chinese. The third was an observation, that Chinese babies are often born with a large, purple discolouration on their buttocks that fades with time. These discolourations were pejoratively called Mongolian blue spots. 

The fourth clinical pearl was the strange one. I don’t remember much about the classroom content of first-year medical school, but this moment sticks with me even now, two decades on. In ethics class, we were learning about the concept of patient autonomy, the concept that patients have the right to make choices about their own health care. At this point, the ethicist mentioned to us that in many Asian cultures, especially Chinese and Japanese, people chose to forego autonomy and informed consent when it came to elderly family members and end of life care. What she meant was that Asian families often withheld information about the nature of their parents’ terminal illnesses from them for fear that by telling them parents the truth, their parents would feel irrevocably sad or upset, and that this might even hasten the progression of their illnesses. Until that day, I had never heard of this issue of withholding information from elderly family members before. As a Chinese Canadian, I had taken it for granted everyone would want to know the truth about their health when the time came. 

A few months after that talk, I was at home and broached the topic with my father. 

“Dad, they taught us that Chinese don’t like to tell elderly people that they are dying in order to protect them. Have you ever heard of this?” 

“Of course. You didn’t know about this?” He raised an eyebrow and gave me a look, as if surprised at how little I understood the world. “For Chinese people, we don’t talk about these things. If you know you are sick and dying, then your sickness will be worse.” 

My father was a learned man. He was a PhD in economics and had lived in North America for more than half his life. I expected more from him. “So you’re telling me that if it was you, you wouldn’t want to know?” 

“Of course I wouldn’t want to know.” 

His answer startled me. I had known that we had some different conceptions rooted in our different backgrounds, but for some reason, this caught me by surprise. I had expected him to share in my discovery of something that I presumed was backwards, old-fashioned Chinese thinking. But now it turned out that he was exactly the person being described in the ethics handbook. How little did I know of the world? How little did I know of my father? 

I dug out my first-year ethics textbook the other day and found the specific passage in question. On the subject of autonomy and Asian patients, the author Philip C. Hébert explains: 

When I read the passage over now, I can’t help but find it jarring. For an ethics textbook, the passage does seem to make the assumption that the western way of autonomy is the only right way. I wonder why I didn’t feel that way when I read the passage the first time so many years ago. 

This specific issue, that of telling an elderly family member about their diagnosis, became the basis of The Farewell, a 2019 film directed by Lulu Wang starring Awkwafina and Tzi Ma. The movie was loosely based on events from Wang’s own family life, in which an elderly grandmother is unaware that she’s been diagnosed with lung cancer. In the movie, the grandmother’s extended family decides that they want to have one last big family get-together but they can’t tell her about her diagnosis. They plot an elaborate fake wedding for one of the grandchildren and use it as an excuse to get everyone together. The movie is told from the vantage point of Billy Wang (played by Awkwafina,) the Americanized granddaughter who loves her grandmother and doesn’t really understand why they can’t tell her the truth. 

By the end, the movie settles on making the point that although the Chinese way of not telling the elderly about the diagnosis is different from what Billy is used to in the West, it isn’t necessarily worse, and it might even have its own merits. 

The movie wraps up with a postscript that Wang’s grandmother in real life is still living happily a good six years following her diagnosis. The movie implies that by not burdening her with the truth, the family has managed to improve the grandmother’s quality of life for at least these last few years, and hints that they might even have possibly affected the outcome of her illness and helped send the cancer into remission by not burdening her with the truth about cancer. 

In my own medical career working with Chinese immigrant patients, I have witnessed versions of this issue arise on several occasions. Several times, I have been asked by well-meaning children that “should anything serious ever happen to my mother or father, please do not inform them of the situation.” 

Sometimes, the request is gentler. “If any really important bad news needs to be broken to the parents, please let me know first and then we can discuss what to do about it.” 

As I’ve come to understand it, the reason for the request is a combination of things. There’s the obvious, overarching cultural basis to it. Confucius may not have ever specifically addressed the issue of whether people should withhold life-threatening medical diagnoses from their parents, but he did repeatedly underscore the value of filial piety and how one’s loyalty to one’s own parents should in some ways exceed their loyalty to themselves. So, in a way, not telling our parents the truth about their own mortality is just a little white lie to ease help ease a loved one through one of life’s inevitable travails. At least they’ll feel better not having to worry. 

This leads to the second reason, the belief that knowledge of one’s own mortality will almost certainly worsen any medical condition and hasten one’s demise. Given our own modern understanding that stress can make health worse, it does make sense to presume that fear about one’s own demise, very likely the greatest stress of all, could have deleterious health effects on a person who is already ill. 

Finally, sometimes the reason for requesting us to forego patient autonomy is simple pragmatism. Maybe mom or dad are unable to handle stress even at the best of times and we already know they won’t take the news well. In this case, shielding them from the truth might make a lot of things go more smoothly. 

In any case, when I’ve been presented with this scenario, as a Westerner, it’s difficult to dial down the urge to sit the patient’s family down and start channeling American police and cowboy movies. I can just imagine myself putting my hand on my holster and informing them that, “Ma’am, this isn’t the way we do things around here.” 

In my early years in practice, this is pretty much how I approached the problem, by understanding it as a purely cultural difference, and assuming that the ethics underpinning autonomy and informed consent should have universal application to all patients, regardless of cultural background. My understanding was that if you were living in Canada, then you had better accept that you had to do things the Canadian way. In short: when it comes to medical care, this is how we do it here. 

With that in mind, I’d sit down with the family member and explain to them that while we respected that other cultures could feel differently about this issue, this wasn’t really the way it’s done in the West. Then I’d present a compromise. “How about I ask your parent a hypothetical question along the lines of ‘if something were to happen to you, would you want to know about it?’” 

I’ve done this on several occasions in my career, and without fail, each time the elderly patient would contemplate the question for a moment before shaking their head and deciding that that no, they were better off not knowing the truth. 

What’s the big deal about all this? What happens if Grandmother or Grandfather doesn’t know the truth about their own illness? Is it really such a big problem if their child makes all the major medical decisions for them while they exist in a state of unknowing bliss? Isn’t that not that different than how parents often approach major medical decisions for an infant or a small child? 

And what about patients who explicitly abdicate responsibility for their own health at the eleventh hour? If the parent specifically says that they don’t want to know about their illness, then what? What are the implications of them ceding responsibility for this portion of their life to their loved ones? 

On a very basic pragmatic level, the parent not knowing about their own medical illness throws a monkey wrench into the basic efficiency of the health care encounter. In the West, certain aspects of health care depend on the patient being able to make informed choices, or at least depend on them having the knowledge of their illness. 

Imagine attempting to go for surgery or chemotherapy but not actually knowing that you have cancer. Imagine furthermore, that all the nurses and doctors who talk to you, who know full well that you are dying, cannot slip up even once and tell you the truth about what you are facing because once they spill the beans, there’s no putting anything back into Pandora’s box. 

Treatment decisions that might normally just be a quick conversation with a patient, now need to be run by an intermediary. Doctor visits that take ten minutes now take twenty minutes as a result.  

Furthermore, the practical effect of withholding information doesn’t end with health care. It applies even beyond the medical aspects of end-of-life care. Estate planning, inheritances, all the things that give grieving families around the world even more grief, are much more easily dealt with if the person who is dying is able to say what they actually want done. Except they can’t, if nobody actually is allowed to tell them that they are dying. 

There’s also this aspect from the family member’s standpoint: when a person agrees to make all medical decisions for their parent, they are agreeing to take responsibility for some decisions that are essentially impossible to make, especially when it pertains to end-of-life care. Should we perform heroic, but most likely futile measures on your parent? How hard is it for someone, even if they’ve had a full discussion with their parent, to be willing to make these life and death choices on behalf of their parent? 

Perhaps I’m giving away my Western upbringing, but I still can’t help but feel that there is something inauthentic about withholding the truth. Imagine living your days in an imagined reality where you believe you aren’t actually very sick, but you are. Without this end-of-life discussion experience, the person who is sick, and very likely their children, are not able to emotionally share life’s final journey together. Since it’s a journey that we all have to take, and it’s well-accepted that a serious illness or death in the family is one of the most difficult and stressful things that anyone has to go through, it only makes sense that if we can talk about it as a collective, surely we could deal with it better together than going through it alone. 

In the West, we are proud to have come up with these ethical principles that define our medical care. We laud the principles of autonomy and informed consent and look down at cultures that do things a different way. But as I’ve gotten older, I’ve noticed that in fact, Eastern and Western ideas about this aspect of medicine are not as dissimilar as we might presume. Yes, it’s true that in the West, as doctors we make a point to talk to the patient about death. We’re not afraid to tell a patient they have cancer, and we’re not afraid to try to tell them that the end is near. But at the same time, we usually stop right there and don’t say much beyond that. 

What does it actually mean to be dying? How does that make you feel? Is it scary? Do you have any regrets? Is there anything else you would like to do before you go? How does it make your children feel? Is there anything we can do to help with any of this? These are not conversations doctors typically have, but they seem to be at the heart of facing death honestly and authentically. 

The fact is we’re mostly not trained as doctors to have these conversations. Quite frankly, I’m not sure that most of us even have these conversations at home with our own families. It’s too easy, most times, when faced with these end-of-life crises, for doctors to leap into problem-solving mode. That is, after all, what we’re best at. End of life care sometimes becomes a series of day-to-day crises to manage. You’re having difficulty getting up? We’ll bring in a wheelchair. Constipated? There are so many pills for that. In pain? Good thing narcotics have been invented. As doctors, we’re trained to reflexively problem-solve. But sometimes, maybe what people need as they face death, is just someone to be present, to listen, and to talk to. Death may be inevitable, but it can still come with catharsis. 

Fortunately, the culture of Western medicine is changing. Conversations around death have become more normalized. The development of palliative care, a relatively new field of medicine that has appeared in the last several decades, has certainly helped this process. When it comes to death and dying, medicine in both the East and West still has much to learn, but at least we are trying. Maybe we will get where we need to be someday. 

My father was diagnosed with Alzheimer’s dementia in 2013. Shortly after he was diagnosed, we were faced with the issue of establishing power of attorney and determining what to do in the event of end-of-life care decisions. At the time, his illness wasn’t that severe, and he was a pleasant, if mildly confused, sixty-eight-year-old. He’d even been driving up to a few months prior. 

So one night, at dinner at my mother’s house with my sister and me present, we took out the power of attorney paperwork and gathered around the dinner table with him. I remembered how he’d told me so many years ago that he wouldn’t want to know if he was suffering from a terminal illness, so I tried to explain to him that we weren’t asking him these questions because anything was imminent, but just as a precaution for the distant, distant future; we wanted to know his wishes in advance. We asked him that in the event he became incapacitated, what would he want us to do? Did he want heroic measures like CPR and being put on a ventilator? 

I still remember him looking back at us, sheepishly, like a small child. It’s impossible to know just how much he understood in that moment. 

He smiled and said, “I guess if it’s already that bad, you don’t need to do anything.” 

Then he got up and shuffled off to the living room. 

I breathed a sigh of relief. It was obvious that, demented or not, it was a conversation that my father had not wanted to have. And the same went for me. 

I never talked to him about his diagnosis again. 

Web photo by Alexander Grey

Additional Chapters from A Chinese City Doctor’s Notebook

When Your Body Isn’t Yours 

01.12.26 571

From Tigers to Otaku

09.16.25 1389

The Happiest Couple

07.28.25 1165

The Things We Don’t Talk About When We Talk About Dying 

05.13.25 1747

One Patient, Two Systems 

02.24.25 2383