"Savor every day" and the myth of survivorship
When does the part where people with cancer become "grateful for everything" start?
A friend of mine was diagnosed with cancer around the same time as me. One thing he’s found helpful has been reading essays and books by people with cancer. I, on the other hand, have mostly avoided this. When I’m watching a movie or TV show and a character has cancer, I turn it off. When cancer is used as a plot device in a frothy mystery novel I picked up for distraction, I smash the return button on my Libby app. Cancer has devoured my life for going on nine months. I don’t need it to become my hobby.
But I trust my friend, so when he sent me an essay by the late Catholic essayist Brian Doyle, I took a look. Doyle is one of those writers you’re pretty much not allowed to dislike in certain circles of spiritual writing, along with Richard Rohr, Anne Lammot, Glennon Doyle, and others I think of as self help but with liberal Jesus-ish content. But I’m an asshole so I’ll go ahead and say that I don’t really enjoy reading any of these authors, because their writing often leans heavily on sentimentality and ice skates on the edge of cliché.
If you’re a fan of these kinds of books and they’ve actually helped you, that is great. Truly. Much like the music of Taylor Swift, it only took a few listens to understand that it’s just not for me, but others love it and that’s fine. But when you’re facing down the shotgun barrel of your own mortality, being told, as Glennon Doyle often says, that is life is “brutiful”1, or hearing Rohr remind us that “before the truth sets you free, it tends to make you miserable,”2 or marveling at the sheer number of books Lammot seems to crank out that all somehow say the same thing about awe and wonder or wawe or aonder, it’s hard to feel like any of that kind of life advice is actually going to help. If your primary concern is “how not to shit myself at work while on oral chemo for two years” followed by “death,” these kinds of books don’t offer much of substance.
What cancer actually feels like: Saturn Devouring His Son by Francisco Goya. 1820.
Brian Doyle, however, died of brain cancer at the age of 60, so I was somewhat more optimistic that he’d have some good advice. And the essay started out in a promising way, criticizing the idea that “battle” language about cancer that so many of us who have it absolutely detest. This kind of militaristic and violent language used for cancer reduces patients to winners and losers. As Barbara Ehrenreich puts it, those who don’t die “merit constant honor and acclaim. They, after all, offer living proof that expensive and painful treatments may in some cases actually work.”
Doyle explains that “cancer has to be endured,” not fought, and that it is humility, not the hubris of the “battle” language, that is really the end result of cancer treatment. But then he veers into an example of a child with cancer, and, dear reader, this is where I realized that the essay was very much not for me. Doyle writes (the formatting is weird here because I’m copy/pasting from a PDF):
I know a boy with brain cancer. He’s 16 years old. He isn’t battling his cancer.
It’s not something to defeat. He is enduring it with the most energy and creativity
and patience he can muster.
He says the first year he had cancer was awful because of the fear and vomiting
and surgery and radiation and chemotherapy and utter exhaustion. But he says
that first year was also wonderful, because he learned to savour every moment of
his days, and because he met amazing people he would never have met, and
because his family and friends rallied behind him with ferocious relentless humor,
and because he learned that he was a deeper and stronger and more inventive and more patient soul than he had ever imagined.
And I read this and emailed my friend who sent it and replied:
Doyle mentions "savoring every day,” and I'm still waiting for this to happen. Still waiting for the part where I become saintly, sweet, considerate, where I greet each day with gratitude etc etc etc. Instead I find myself toggling between anger, sadness, and a kind of hysterical "don't give a fuck" attitude.
And this is the truth: unlike what Doyle’s young friend says, there is nothing “wonderful” about cancer. It is painful, humiliating, and has introduced levels of shame and frustration into my internal emotional life that I didn’t think it was possible to reach. And the shame and frustration are directly rooted in the notion that cancer patients should be “deeper and stronger and more inventive and more patient” when I am, in fact, none of those things. Instead, I’m flat-chested, still semi-bald, tired, my joints ache from hormone blockers, sleep is elusive, and more than anything else, I’m just so, so angry.
Anger is the opposite of what so many books and essays about cancer tell you to feel. And while I’m aware that not every cancer patient is as angry as I might be, the fact is that we should be angry. None of this is fair, right, or just. Why act grateful for a turn in life that brings so much pain?
Last week, I went to a “Life After Treatment” class my HMO recommended, during which I was told to eat a healthy diet, exercise, meditate, and keep a gratitude journal. The same HMO recently denied my claim to pay for a therapist who specializes in working with people who have life-threatening illnesses. I am grateful the same HMO paid for almost everything, and I am grateful for my medical team, my job my friends and my family, but I am not going to start a gratitude journal when I should instead have therapy covered by insurance like everyone else should.
The same HMO keeps insisting I have now entered something called “survivorship,” even though I have five to ten more years of medication ahead of me before we even know if the fucker will return or not. And again, language matters here: the only thing that indicates survival is not being dead, but death can come for any of us at any moment, not just for people with cancer, but college students dealing with unprecedented rates of depression and anxiety, children in Gaza and Ukraine, kids riding bikes in Oakland, mothers dying in childbirth, homeless opioid addicts, anyone crossing the street in San Francisco who can get mowed down by a self driving car. Are they too “survivors” if they make it to the end of the hour or day? Have they “lost” if they don’t make it, and was any of this because they weren’t grateful enough for their “brutiful” lives?
That’s why I’m angry, because cancer is trying to wrest my life away from me, and because I don’t have any control over it. I can only control the narrative of how I talk about it. Sentimental and clichéd language robs us of the raw authenticity of experience and turns it into a pink, frosted version of illness that does nothing to remind doctors, researchers and pharmacists of the horrifying urgency of the fact that in spite of all the money dumped into “awareness,” people are dying of cancer younger and younger and that it disproportionately kills people of color and poor people.
Mammograms alone will not solve this. Neither will landfills worth of books telling us to smooth over our anger with gratitude and grind down our outrage with meditation apps and “healthy habits.” We have to be honest, or we’re just perpetuating the same lies that self-help books of all kinds perpetuate: that there is an easy fix when your body and mind have been broken by a disease you didn’t ask for and don’t deserve.
If there’s one thing I do savor every day, it’s that I’m not beaten down so far that I can’t see that cancer isn’t a battle or something to be grateful for. It’s an injustice. Try calling it that and see what happens.
Brutal + beautiful and I feel a little nauseous just typing that out.
🙄