Although cancer patients already have enough on our plate, we are tasked with the labor of managing other people’s emotions about our disease.
On the pilot of the CW’s new feel-good dramedy, Life Sentence, a young woman with terminal cancer, Stella (the lithe, doe-eyed Lucy Hale) picks out a cake for her own funeral. Later in the episode, the cake is repurposed for a celebration, because Stella finds out that her cancer has been miraculously cured. Instead of a projected six months left to live, she now will now enjoy a normal lifespan. In typical Hollywood fashion, a reevaluation of her priorities and relationships ensues.
Let me tell you about someone who did not luck out like Stella did.
Candace* a mother in her mid-thirties, was diagnosed with aggressive breast cancer when she was young, like me. Along with her friends and family, she created a Facebook page, “Candace Crushes Cancer,” to update others on her medical journey, as soon as she realized how serious her case was. It happened quickly. Metastatic lesions invaded her hipbone, then ate away at her liver, and finally appeared in multiple spots in her brain. Terminal. She tried medication after medication — harsh chemotherapy regimens that sapped her energy — and attempted to enroll in clinical trials for experimental drugs. She rapidly ran out of options as her blood counts tanked. Candace posted that she wasn’t ready to die. She wanted to fight. It was October, but her doctors cautioned that she probably wouldn’t see Christmas. I don’t need to tell you what happened next, but, to put it crudely: Cancer Crushed Candace. In the final photos from just before she entered hospice care, she was bald, weakened, unrecognizable. She left behind a partner and four young children.
This is unfortunately the real outcome of almost all terminal cancer cases, in 2018. Early stage patients have a very good shot at curative interventions, remission, and long life spans, but for many of us — those with cancer that hides out for years before making itself known, or is repeatedly misdiagnosed, or mutates into a treatment-resistant subtype, or simply spreads very quickly — it’s too late for a miracle. By definition, the cancer will win, and not the long-suffering patient, unless they get hit by a bus first.
Fantasies that tell us otherwise are dangerous and insulting, and they don’t only come from Hollywood. The idea of the “miracle cure” represents a conglomeration of media mythmaking, mainstream religious tropes, New Age spirituality, pseudoscientific quackery, and good old-fashioned commercialism. It’s based on the imperatives of hope and optimism that pervade our conversations about illness and disability, to the detriment of patients who grow weary from having to perform a “positive attitude” about experiences that resemble physical torture.
It’s a grave offense to be fatalistic in the face of cancer. When you get sick, the trite messages found on embroidered pillows, pastel Instagram graphics, and t-shirt slogans become directives for how to approach your illness the right way. You are somehow supposed to “expect miracles,” while watching fellow patients waste away, drop dead, and orphan their children. You notice that sympathy is reserved for the most upbeat survivors, and that fear, anger, and especially candid resignation make other people deeply uncomfortable. Although patients already have enough on our plate, we are also tasked with the labor of managing other people’s emotions about our own disease. I discovered early on that presenting as cheerful and hopeful yielded more support from strangers, acquaintances, and caregivers, while being honest about my fears left others unsure of how to react, or eager to dismiss my feelings as too “morbid.”
My friends and family, understandably, don’t want to think about my death. But I do. In fact, it’s the only real way that I’m able to process what has happened to me, and what is likely to happen in the future. I have to confront it, to stare it in the face. The problem is, because of social taboos, I am left to do this daunting work on my own, tossing and turning in the dark each night imagining the assortment of painful ways my body will one day shut down. It’s a very lonely reckoning. The silencing of “negativity” is a recipe for patient isolation.
The reality is, my cancer doesn’t care how I feel about it, and while a positive attitude may help some people get through the day, it cannot actually stop one’s illness from progressing. “If you visualize your body receiving a cure, a cure will manifest,” a well-intentioned nurse told me on the day I was diagnosed, as if the “Law of Attraction” could be applied to the genetic mutation that caused my cancer. As if the rogue cells in my body could possibly know how much I wished for them to stop multiplying, and then simply bend to my will.
The most visible voice of dissent in this tyranny of “good vibes only” has been journalist Barbara Ehrenreich, whose work critiques the “sugar-coating” of cancer as a way of burying a grim reality “under a cosmetic layer of cheer.” Sadly, little has changed in the decade since Ehrenreich wrote about her own experience navigating a cancer diagnosis in a culture of positivity so relentless that it borders on delusional. After all, just last year, a company invented a high tech handheld mirror for cancer patients that only reveals your reflection if you smile. Otherwise, the implication is, you might as well not exist. You are nothing without compulsory optimism.
It’s no coincidence that “hopeful” people are more likely to spend money chasing miracles, as the line between blind optimism and gullibility can be blurry. Ehrenreich and others have written about the pink ribbon symbol as a crass corporate marketing strategy, but the problem goes beyond breast cancer, and has infiltrated the current wellness movement. Companies that sell unproven homoeopathic remedies in the forms of vitamin supplements, juices, essential oils, cannabis products, healing crystals, and other pseudoscientific modalities are banking on the fact that sick people will try anything for a potential cure. When “alternative” doctors peddle special diet programs and alkaline treatments, they anticipate that our desperation for a miracle will override our critical thinking skills and better judgment, and optimism is warped into something actively harmful.
The media plays into the miracle narrative with fantasy shows like Life Sentence. In episode three, we learn that Stella was cured because of her participation in an experimental clinical trial. While mainstream Western medicine certainly has a better track record compared to alternative therapies, clinical trials are notorious for disappointing results when it comes to curing cancer. Too many terminal patients are given false hope when they enroll in these studies expecting recovery, as new cancer drugs typically only prolong life by a few extra months rather than years. Life Sentence perpetuates the tendency to showcase medical anomalies rather than the average patient, whose journey is much more of a bummer.
When covering real-life cases of cancer, the media is often guilty of using what disability activists call “inspiration porn.” Sometimes, these are stories about the rare statistical outliers who beat the odds, framed to make it seem like they did so by virtue of impressive internal fortitude rather than sheer luck. (The message: if these model patients can cheat death, everyone else must be doing something wrong.) Other times, inspiration porn presents buoyant dying patients as examples to show healthy, able-bodied people how to live meaningfully — “as if each day is your last.” But most of us sick folks would happily trade in our newfound insights and emotional resilience for a clean bill of health. We shouldn’t be trotted out as motivational teaching tools to help everyone else put their own banal problems into perspective.Most of us sick folks would happily trade in our newfound insights and emotional resilience for a clean bill of health. Click To Tweet
In the vast majority of cases, terminal cancer patients do not make sudden miraculous recoveries, no matter how much they fight, rally, love their children, and don’t want to leave their families. No matter if they travel outside of the country for costly alternative treatments, or eat apricot pits or vape cannabis oil. They still die. They are prayed for, sometimes by hundreds of loved ones. They die anyway. If my own cancer metastasizes to my bones or organs before a cure is found, I will die, anyway.
I had to confront this horrific reality at 31 years old, and integrate it into how I understood the world. Now it’s everyone else’s turn. But it means facing some distressing truths about death, disease, and our sense of justice. First: the fact that humans are mortal, and sometimes we die too young, for no good reason, and by no fault of our own. (This clashes with several adages about God working in mysterious ways, never making mistakes or giving us more than we can handle. It also contradicts the widespread belief that we all ultimately get what we “deserve.”) Second: cancer remains a death sentence for millions of people, even during a time of impressive, awe-inspiring technological and medical progress. It takes time — years if not decades — for the latest laboratory discoveries to jump from petri dishes to mice to human subjects, so when you read about a promising new finding, remember that it won’t actually help the people who are living with/dying from terminal cancer today.Cancer remains a death sentence for millions of people, even during a time of impressive, awe-inspiring technological and medical progress. Click To Tweet
And third, medical miracles — to the extent they exist at all — are much more likely to happen against the backdrop of care that is affordable and accessible to everyone, something we don’t yet have in the contemporary United States. My chemotherapy treatments were about $20k each, and there were six of them. One night recovering in the hospital was $75k. I am lucky to have a robust health insurance plan (thanks, Obamacare) but I still needed to crowdfund for the various expenses that weren’t covered. In my cancer support groups, fellow patients with no insurance, or ones who live in states that did not expand Medicaid as part of the ACA, are on the hook for thousands of dollars they don’t have, during a time when they can’t actually go to work and earn income. The financial stress takes an emotional toll. I imagine it is easier to stay positive when you don’t have to worry about going bankrupt.
If there is anything at all to be hopeful about, it’s that the culture of toxic positivity might one day shift. The fact that “thoughts and prayers” are now recognized by many young Americans to be an insufficient way of addressing gun violence suggests we may be amenable to reevaluating our stubborn magical thinking in other areas. I sure hope I’ll be alive to see this happen.
*The name has been changed to out of respect for the privacy of her family