Young Adult Cancer Story

TAGGED AUTHORS

John Green

TAGGED BOOKS

The Fault in our Stars




Young Adult Cancer Story by Briallen Hopper

July 16th, 2014 reset - +

ON THE MONDAY when The Fault in Our Stars was the #1 movie in America, I spent the morning at Smilow Cancer Hospital at Yale-New Haven learning about the intricate physics of intersecting radiation beams and marveling at an animated scan of the inside of my friend Ash’s body: a Rorschach image of irregular black-and-white shapes that each emerged and grew and shrank and vanished as we moved down from her shoulders through her healthy heart, spotted lungs, scarred gastro-esophageal junction, stabilized liver, and newly enlarged lymph node.

It was the lymph node’s fault that Ash and I couldn’t go see The Fault in Our Stars together that week as we’d planned. The node wasn’t responding to treatment, which meant that Ash was headed to the city for a second opinion at Weill Cornell Medical College plus some quality time with her friend Ritu in Brooklyn.

Ritu and I, along with Ash’s friends Annette and Sarah, had read The Fault In Our Stars this spring at Ash’s insistence. During a rough bout of chemo when she could barely eat or drink, Ash read it ravenously, immersing herself in the story of Hazel Grace Lancaster, a teenager who has incurable Stage IV cancer, a hot boyfriend, and a distinctively wise and nerdy voice combining perceptiveness and snark. Afterwards Ash bought extra copies to give away. “You have to read it!” she kept telling us.

Ash, Annette, Ri, and I once had a conversation about what makes writers different than other people. We concluded that non-writers worry that writing about their lives will get in the way of actually experiencing their lives, whereas writers worry that if they don’t write about something then they’ll fail to fully live it. By this definition and many others, Ash is a born writer, and thousands of people have been moved by her ability to write about her cancer through images of lit-up leaves, sunsets streaked and broken like egg yolks, and the swift-moving shadows of birds in flight. Like Hazel’s, Ash’s illness has always been text as well as flesh; ever since her first chemo spring when she would write at the infusion center with the toxins flowing in and the words flowing out as she sat and scribbled by a sunny window that overlooked a graveyard.

Most of Ash’s experiences with cancer can’t be shared: even when we are with her, her cells and side effects remain hers alone. But we try to share what we can, and so we’ve all been reading and watching The Fault In Our Stars. Ritu read it on her Kindle in New York while she was visiting another loved one with cancer, and went to see the movie with her husband a few weeks later. Sarah listened to the audiobook at home in Minnesota while nursing her new son and then saw the movie with a friend. Annette eagerly borrowed my copy when she came to visit and afterwards we saw the movie “virtually together”: she went to an afternoon matinee in Illinois the same day I went to one in Connecticut.

Personally, I read The Fault In Our Stars the way its protagonist Hazel Grace Lancaster falls in love with Augustus Waters: slowly, and then all at once. I started out reading it a chapter at a time in between the papers I was grading, and then I gave up on grading and read straight through till dawn.

I have no idea how I would feel about The Fault in Our Stars if I were one of the millions of teenagers who have filled the theaters for a month and kept the book on the best-seller list for the last two years and flooded the internet with TFIOS memes, fan-fiction, selfies, and hashtags. I also have no idea how I would feel about the story if I were actually sick. I only know what it’s like to read it as a woman in my mid-30s who is friends with a woman in her mid-30s who, like Hazel Grace Lancaster, has incurable Stage 4 cancer. 

Lately there’s been a debate about why adults read YA novels. It’s impossible to generalize, but I suspect that we read them for many of the same reasons we read any other kind of literature: we are looking for new or familiar aesthetic experiences; for intellectual challenges, or escape, or equipment for living. And when we are reading fiction about an affliction that is rewriting the story of our own lives, we read both for the simple consolations of identification with the characters and for the more complicated consolations of a perspective on our experience that is not already ours. 

For Ash and many of her friends, The Fault in Our Stars has served all these purposes and more. Though we are unalike and far apart, TFIOS has become a common text that connects us across the miles. As we’ve read it, each of us has felt our own experiences with cancer being expressed, confirmed, challenged, and given back to us in different words.

For Ash, it has provided a cultural shorthand for explaining what she is dealing with — a situation that doesn’t fit the common cancer tropes of combat or triumph. She is constantly asked unanswerable questions like “You’re beating it, right?” or “When are you done with treatment?” Ash will never be done with treatment, and she does not experience her life as a battle. Now that TFIOS is everywhere, she can explain, “I have a diagnosis kind of like Hazel’s.” But beyond that, TFIOS dramatizes an urgent truth she wants the world to know: that people with this diagnosis can have stories that are not just the story of their disease, and that their most ardent adventures can happen while they are sick.

Annette is in med school, and one of the things that stood out to her was the careful specificity of the book when it talked about different cancer experiences, and its unsparing descriptions of how illness and death physically look and feel. This descriptive specificity prompts a deeply uncomfortable kind of empathy. I too felt a particular shock of vicarious recognition, a flicker of illness, whenever Hazel described parts of her body as having a recalcitrant and alien volition of their own: “My lungs were acting desperate, gasping, pulling me out of the bed trying to find a position that could get them air, and I was embarrassed by their desperation, disgusted that they wouldn’t just let go.” Sickness is feeling that your body is not you, but still feeling everything it feels. 

Sarah, a public health professor who researches the relationship between the media and health policy, was especially impressed by the book’s take on social media and mourning. She loved Hazel’s critical response to the endless overwrought elegiac posts on a dead boy’s Facebook wall, especially her evisceration of the cliché “you’ll live forever in our hearts.” As Hazel explains, “That particularly galled me, because it implied the immortality of those left behind: You will live forever in my memory, because I will live forever!” The novel helps us see how the virtual immortality of social media can obscure the fact of death, just as a healthy person’s illusion of immortality can become yet another barrier between the sick and the well, the living and the dead.

Ritu works at an education non-profit where she spends a lot of time thinking about teenagers, and she was struck by the novel’s moving portrayal of the deep mutual love and annoyance that exists between Hazel and her parents. They share an intimacy that constantly comes up against the limits of their ability to understand what it is like to have or not have metastatic cancer. Hazel is exasperated and deeply comforted by her mom’s unflagging attempts to make things better: “She never stopped trying, my mom.” And Ritu was haunted by the novel’s depiction of grieving, and the idea of a lost person as a co-rememberer: “The pleasure of remembering had been taken from me, because there was no longer anyone to remember with. It felt like losing your co-rememberer meant losing the memory itself, as if the things we’d done were less real and important than they had been hours before.”

I’m a writing teacher, so I especially appreciated all the different ways the novel shows the power and futility of the written word in the face of sickness and death — not just through the book-within-the book, An Imperial Affliction, whose Amsterdam-based author gives the story its quest-based plot, but also through the cheerful mottos Augustus’s family hang on their walls (“My parents call them Encouragements,” he explains), the texts Hazel and Augustus send each other, the emails, the eulogies, the Facebook posts, The Diary of Anne Frank. In the end no text and no kind of writing can completely satisfy, but none of them completely fail either, except maybe Facebook posts written entirely in cliché.                               

We were all affected by Hazel’s explanation for why she avoids close relationships whenever possible: “I’m like a grenade, Mom. I’m a grenade and at some point I’m going to blow up and I would like to minimize the casualties, okay?”The book and movie resist Hazel’s metaphor: a person is not a weapon, and minimizing casualties is not the point of love. But all of us felt her wariness in our bones. People who love in proximity to cancer are living in a state of vigilance, bracing themselves for what is coming. When Shailene Woodley said these words in the movie trailer, the cheerful pop soundtrack stopped and the romantic scenes suddenly gave way to dark slow motion images of a medical emergency. It was pretty dramatic, but I didn’t need any cinematic cues to feel the ominous impact of her words. 

The melodramatic trailer was a pretty good preview of the movie’s spin on the story. In general the movie was, well, a movie: it turned the unpretentious Midwestern narrative of the novel into a cinematic tale about glowingly beautiful cancer patients with gym-toned parents, upscale houses, and classy clothes, and it simplified the book’s emotions with on-the-nose musical cues and a careful avoidance of the physical realities of death. The story of two kids falling in love was stretched into an extended golden fantasy montage; the story of one kid dying and one kid grieving was shortened into a post-script.

But Shailene Woodley has one of the most expressive faces in Hollywood and one of the huskiest voice-over voices, Ansel Elgort is plenty charming, Willem Dafoe is suitably scabrous as the author of An Imperial Affliction, the script contains all the most important “Goodreads” quotes, and overall the film was excellent at capturing teen sarcasm and rapturous first love and the kind of irresistible grief that is a full 10 on the pain scale. And I cried, as I’d wanted to. I melted gratefully into what A.O. Scott calls TFIOS’s “expertly built machine for the mass production of tears” the way a tired traveler sits down in an airport massage chair; the way an autistic person walks into the carefully calibrated embrace of a robot who doles out the calming pressure that the body craves when human comfort is either unavailable or too much to bear.

All this could be seen as damning with faint praise — an admission that the movie evinces all the faults cited in critical arguments against “Young Adult” fiction.But I left the theater thinking that maybe idealized wish-fulfillment and old-fashioned tear-jerking are necessary, in part because some tears must be forced, like flowers in winter, and in part because an adolescent’s romantic partial view of life expresses a different truth, a truth that the more self-critical and philosophical parts of film and fiction can’t.

I’ve read a lot about cancer in the past few years. I especially loved Love’s Work by the late philosopher Gillian Rose, who brought an academic rigor to her reflections on love, labor, and her own early death. The Emperor of All Maladies is admittedly quite an impressive tome. Yet sometimes I think that YA is the perfect genre for cancer.

Supporting a friend who has cancer is simultaneously the most adult thing I’ve ever done and the most adolescent thing I’ve done since I grew up. There is nothing more adult than witnessing wills, learning the unexpected spellings and side effects of various chemo drugs, poring over lists of clinical trials, and comparing insurance plan prescription coverage on the Connecticut health care exchange. And these tasks are child’s play next to the feats of maturity required to negotiate the roles and responsibilities of chosen family, or to simply keep showing up for the medical or emotional challenge of the day.

But in the midst of all this strenuous maturity there is still something wantonly, brazenly young adult about what Ash has called “living as exuberantly as possible with metastatic cancer.” As Ash and I sit in the waiting room with our laptops trying to find a good cancer novena online, we crack up at the exhibitionist tendencies of St. Peregrine, the patron saint of cancer patients, who is apparently fond of thrusting his diseased leg out of a slit in his long robe like Angelina Jolie at the Oscars. In the examination room in between visits from doctors and nurses we find ourselves falling into helpless giggle fits about the cute or awkward oncology fellows, or swooning over how badass Ash’s middle-aged soccer-playing female oncologist is, just like adoring high-schoolers talking about our favorite teacher. Ash has been known to sing “My Xeloda” to the tune of “My Sharona,” crazy in love with her favorite chemo drug — the one with the least side effects, that leaves her free to go on a writing residency in the Adirondacks and pour herself into the refugee resettlement work she loves.

Ritu teasingly attributes Ash’s frequent sky-high rushes of excitement to “cancer ecstasy.” Our exuberant friend is so good at finding a way to turn her illness into enchantment that we’ve started hashtagging these feats of alchemy “#Ashmagic.” She christened the first summer after her diagnosis “The Summer of Care and Delight,” and we plunged into the season with willful joy. Thanks to the miracles of Xeloda we are now on our third such summer of heightened delight: sipping vinho verde out on the deck, re-watching Mystic Pizza, celebrating Juneteenth with blueberry shortcake and strawberry soda, driving down an Alabama road in the rain with a bag of hot Atomic Fireballs open between us, writing meandering essays on obscure movies or saints, sprawling on a blanket on a hillside on the 4th of July as the fireworks and fireflies light up the sky. 

These summers are the stuff of adolescent fiction. They are urgently nostalgic. They are also a kind of escape. But they are no more narcissistic than pondering philosophical questions while cells mutate and multiply and hope wavers; no more self-absorbed than parsing someone else’s suffering for ambiguities and existential truths. There will inevitably come a season for serious and adult contemplation — for piecing together a provisional pattern of meaning with the sharp shards of loss. There are plenty of literary works that offer this and only this. But a young adult novel also knows when to say: Whatever! Willful wish-fulfillment is what life is for. Now let’s go on a romantic jaunt to Amsterdam!

Of course, most of us were never that kind of young adult: the kind who could seize the joy of the moment and hold on. And neither, often, are Augustus and Hazel. As the book-within-a-book An Imperial Affliction says, and as Hazel and Gus quote, “Pain demands to be felt.” When I was a teenager pain demanded to be felt, and I have the scars to show for it. Perhaps the biggest thing that has changed from my adolescence to my adulthood is that now pain sometimes demands not to be felt. Or: pain makes demands, but being felt is not always one of them. I’m part of a care team and I have a job to do, which means in real life I have to keep it at least seventy percent together. These days I can cry for the length of a song, but not an album. I can rain down tears on the pages of a sentimental novel or in a movie theater full of strangers, but not in front of the friends I love. For Ash, the stakes of giving into feeling are unimaginably higher, and the need to keep it together most of the time is non-negotiable.

This morning as we were walking to the hospital again Ash said, “One thing The Fault in Our Stars does is that it opens veins: the vein of dying early and the vein of wanting to fall in love with someone like Augustus Waters. And it neither leaves you bleeding nor Band-Aids you up. As you get older you get less willing to open veins.”

And this is what three-Kleenex films can do at their best, and what Young Adult fiction can do when it works: open your veins or your tear ducts, and then staunch the flow with something in between what you want and what you have — more drama but no answers; more love but no miracles. I’d like to give Ash a version of what John Green gives Hazel: an age-appropriate Augustus Waters, and a spot in a clinical trial that achieves unprecedentedly durable results. (Durable — what a beautiful word.) But the world is not a wish-granting factory, and so instead I will just share her stories with her — entering into the narratives she makes and loves from the world of real cancer, the world of TFIOS, and the space between.

¤

Briallen Hopper is a Lecturer in English at Yale. 

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