February 5, 2017

Reading : Illness in Fiction

In primary care, we are fortunate to see patients through all the stages of sickness. We make diagnoses of treatable diseases like certain early cancers. We see patients at regular intervals for their chronic conditions like diabetes and heart disease. And we help people achieve cure of their hepatitis C and recover from substance addiction. Then there are the patients with chronic, progressive, incurable diseases. Dementia. Stage four cancer. For whom we provide care, less by treating and intervening, and more by witnessing and accompanying.

I really appreciate how this humbles us, and challenges us to be with people in discomfort and difficulty. It can also be wearing, and a lot to shoulder as increments of people's lives build on top of each other throughout a day of seeing twenty-odd patients. I try to remind myself that as hard as it is for me to consider mortality in 15-minute visits, it's unimaginably hard to constantly breathe this reality. This is the standard philosophy behind empathy--put yourself in that life, realize how much more you have, and be generous. At the same time, this visualization can be overwhelming. It's sombering enough to consider the daily obstacles of sub-par housing, food insecurity, and community violence--add a terminal illness and we're often engulfed by self-defeat and helplessness.

Lately, I've found that books about illness, particularly ones that treat them with a gracious humor, have been helpful in fostering empathy without creating burnout. Even as it's a distraction from the darker aspects of illness, it gives a fuller portrait of the experience--a human depth and dimension that can be hard to reach through the stark curtains of pain and loss.

Which is why the only books I've given five-star ratings to on Goodreads in the past few months are these two:


They May Not Mean To But They Do, by Cathleen Schine
I love this book for many reasons, but a major one is that the narrative is built upon the perspective of an 86 year old woman named Joy.  Her husband Aaron survived colon cancer, and the traces of this experience remain tangible in the form of his colostomy bag.  He suffers from Alzheimer's--he repeatedly pulls out his colostomy bag, spilling its contents, because he doesn't know why it's there.  Because Joy refuses to place him in a home, she takes on the full responsibility of caring for him in addition to working at a museum as a conservation consultant (a poignant parallel to her efforts to sustain him, both worthy endeavors that we know can't last forever).  Their communication declines in steps, gradual and abrupt.  In the beginning they can still speak to each other but Aaron forgets everything Joy tells him.  Then he stops speaking altogether.

Her children, a daughter Molly and a son Daniel, love their parents but have their own barriers to caring from them.  Molly lives across the country; and though Daniel lives nearby, his obstacle, as the book notes, is that he's a son--he isn't quite built to be a caretaker.  Each person experiences their father's illness, and their mother's situation, differently but with the same degree of pain and loss.

It sounds like it would be a depressing read, but I flew through it in five days because it's so funny and charming without taking away from the weight of these lives.  The book pokes fun at each point of view, without ever losing respect and understanding for every individual's feelings.

For instance, one of my favorite funny lines: In an attempt to improve her parents' health, Molly the daughter "had tried once to arrange a regular delivery of decent produce through an organic food website. It had not been a success. Her mother did not like the dirt on the vegetables. Her father did not like the irregular shapes.  Neither of them liked rutagabas."  (After reading this, I saw rutagabas at the grocery store and learned that a rutagaba is a cross between a cabbage and a turnip).

The Fault In Our Stars, by John Green
This book was published in 2012, but in 2012 I started medical residency and sacrificed most else in life for patient care.  Which may not be the best thing for patient care, because in the hospital we see just snippets of illness but books like these really offer so much insight into living with illness.

While I loved They May Not Mean To But They Do for the perspective from older adults, The Fault in Our Stars is on the other end of the spectrum.  It's narrated by Hazel, a 16 year old with terminal cancer who falls in love with Gus, another teenager she meets at her cancer support group. Their endearing story-like names set the tone for their love story that can sometimes feel like a fairy-tale--no easy feat when it's about two very sick, very young people.  But this doesn't take away from the heavy reality of what they face.  Green mixes the sweet and tragic so naturally, that you can't help but laugh, even through scenes about cancer.  And at times, when you'd think humor would undermine the tragedy, it's actually what makes it more tangible:

"I told Augustus the broad outline of my miracle: diagnosed with Stage IV thyroid cancer when I was thirteen. (I didn’t tell him that the diagnosis came three months after I got my first period. Like: Congratulations! You’re a woman. Now die.)” 

Hazel's wit never undercuts her vulnerability, but it makes sure her cancer never overshadows her character.  It gives voice to her strong sense of agency: "You have a choice in this world, I believe, about how to tell sad stories, and we made the funny choice."  Green never paints an illusion that this agency can overcome things out of Hazel's control, and the contrast between her personal humor and her life's tragedy is so palpably real and heart-breaking.

So, the next time you're feeling down about some wrong or sadness in the world, and reach for something mindless like bad TV for comfort (I've been there and I can guarantee you my choices are more embarrassing than yours)--consider reaching for something like this instead.  These books about sickness and mortality make you fly through the pages, inviting you into a world of hurt that we often want to avoid.  And by lining the light and dark side by side, for me the novels made the immersion into something I thought I didn't want to enter, something I was so sad to leave.

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