It Took Me Two Years to Learn What I Need to Know for the Rest of My Life

Photo courtesy of Lenny Gotter.

Two weekends ago, I got sick. I slept most of Sunday. When I wasn’t asleep, I was reading a sociology book about how experiences like medicine, illness, and death are constructed by social and cultural factors. It’s called Medicine as Culture by Deborah Lupton. For a scholarly work, it’s very readable. 

I grew immersed in the book as if I were reading a sci-fi adventure. I almost felt like I was reading for escape, except the escape was a tapestry of theoretical perspectives that shifted how I see my grief profoundly. For the past two years, I’ve learned that living in a Western society can be a daily ordeal caused by language and imagery relating to medicine and illness. But thanks to Lupton’s book, I saw that I’m not hypersensitive about my wife dying from a curable disease. Critics have been examining the problems of how we understand and construct medicine and illness through linguistic and social practices for decades.

What Lupton’s book has made clear to me is that I’m not the language police, a hypocrite, or a widower who is simply thin-skinned.

Let’s consider some examples pertaining to cancer—since that’s the disease listed on Kara’s death certificate. In America, it’s common colloquial practice to call colorectal cancer “butt cancer” or “ass cancer.” It’s not common colloquial practice to call breast cancer “tit cancer” or coin a snarky nickname for cancer in other parts of the body. Yet which organ is more likely to embarrass you—your rectum or your pancreas? We re-stigmatize our rectal areas in the context of a life-altering or even life-ending disease.

Then there’s how we talk about colorectal cancer screenings. We talk about colonoscopies as if they’re a minimally disruptive, yet important public service. Our doctors tell us they’re easy-peasy. Our associates, who aren’t in the habit of announcing their dinner plans, inform us they’ll be on a strict diet of Jell-O and popsicles for the night. In this instance, we are destigmatizing what Bruce Willis in The Story of Us called “the tops of our legs,” because we are drawing on the discourse of early detection and prevention, not the discourse of diagnosis and treatment. We publicize the tops of our legs as the site of an act of virtue.

This doesn’t even consider the fact that getting a medical examination of any kind is extremely distressing for some people. As Lupton states: “Having undergone a medical test, previously well people enter a liminal state where the integrity of their bodies is questioned and left dangling while they await their test results, where the notion of a mysterious disease, which has silently invaded the body and lies in wait, is engendered.”

On that note, if your colonoscopy results indicate you need to get a polyp removed, then good on you for being a model of preventive healthcare. If they indicate you’ve got a malignant mass, then the extent to which you’re at fault depends on its curability. Even a slim chance of remission means you were at least sensible enough to go to your doctor in time. Now comes the opportunity to proselytize for the medical establishment. “I’m going to be fine, thanks to my healthcare team. But it was a close call. Don’t put off your screenings!” That’s the script for those with curable cancer. “I didn’t see my doctor in time. Don’t be stupid like me. Get your screenings!” That’s the script for those with incurable cancer.

Speaking of scripts. We talk about the war against cancer. Western medicine’s war against cancer. The public health war against cancer. The oncologist’s war against cancer. The patient’s micro-war against cancer. Yet we don’t call people veterans when they transition from the war against cancer. (Although we do call seasoned athletes veterans because war and sports use similar imagery and language.) We call them survivors. Sometimes we even call them thrivers, as if it’s not enough to be alive after chemotherapy, surgery, and radiation. To reintegrate after the war against cancer, you must super-survive.

On the other side of the coin, we don’t call people casualties or combat fatalities when they’re unable to return from the war against cancer. We refer to them as losers. When we say, “Bill lost his battle with cancer,” we’re essentially saying he’s a loser, albeit with the gravitas of an NFL broadcaster. It’s a form of decency to give someone a valorous demise when their disease is understood as an invading empire, yet the words for their defeat must be found on the sports desk. In fact, there’s an interesting trend in response to this awkward divide between the winners and losers in the war against cancer.

When we announce Bill’s death, we’re still obliged to say he’s a loser, but we justify his failure on the merits of his metastases. We describe his cancer as “highly aggressive,” “vicious,” and “fast-acting.” In some cases, we say his cancer was “extremely rare.” So that now we’re witnessing an age where people are super-surviving and super-dying in the war against cancer.

I acknowledge some of this is mass media and Internet hyperbole. But as Lupton states: “...in Western societies, as in all other societies, issues of health, illness, disease, and death are inextricably interlinked with social processes; that is, the biological dimensions and medical understandings of these phenomena cannot easily be extracted from the socio-cultural settings in which they are known and experienced.” Socio-cultural settings existed long before we walked around with computers in our pockets.

I give these examples—which came from my head, where they’ve been marinating in sarcasm for a few years—not to ridicule anyone. I don’t attack individuals for maintaining established norms of language use. Even when someone jokes about butt cancer, I don’t harangue them about how oppressive discourse can intensify the suffering of colorectal cancer patients. I’m not going to change how illness is experienced as a social phenomenon by yelling at people.

Besides, I, too, have followed certain parts of certain scripts in certain spaces. I’ve consciously used cancer battle metaphors for crowdfunding and self-promoting. Non-battle expressions tend to lack persuasive power. Susan Sontag’s book, Illness as Metaphor, taught me to take care with metaphorical discourse when I discovered it almost thirty years ago. Yet even as I write this, I’m aware that what I say—via metaphor or not—may reflect unexamined truth claims from my own privileged position and therefore may contribute to negative or oppressive discourses.

What Lupton’s book has made clear to me is that I’m not the language police, a hypocrite, or a widower who is simply thin-skinned. I have the urges of an activist. Not in the iconographic sense of a person who stages protests or organizes charities, but in the preliminary sense of a call to resist negative discourses around medicine and illness that is gradually taking shape in what I’ve come to think of as an extension of my late wife’s body of work. 

The project encompasses creative expressions that challenge oppressive cancer discourses and foster growth for alternative images and knowledges of medicine, illness, cancer, and death. It took me two years and a book like Medicine as Culture to realize Kara’s mission was this when she launched her blog and documented her quest for healing. But I’m finally catching up to her dream of social change and I want to dream it even bigger for more people than she could reach. This is my call to activism—to pass on everything I learned from an activist.

With her child-like enthusiasm and innocence, her love-it-or-leave it creative output, her determination to show all sides of her experience, Kara Muir sparked resistance against the uses of language and imagery that stigmatize, alienate, and oppress those living with illness and confronting their mortality. Maybe that’s not the first thing you observe in one of her dance performances, but the devil is in the details. When she pantomimed dragging herself on stage in a devil costume and burst into an air guitar interpretation of Rob Zombie’s “Dead Girl Superstar,” she was clueing you in on the act. Being fun and silly (two of her favorite adjectives) as a cornerstone of late-stage cancer therapy is certainly a novel way to resist societal expectations and provide alternative visual representation of advanced illness and patienthood.

As I mentioned at the beginning, I’ve experienced a deep shift in how I understand my grief. Thanks to Lupton’s book, I no longer see my frustration with the construction of medicine and illness in our society as emotional self-defense, a means of suppressing regrets that I am expected to have as the husband of a woman who died prematurely from a cancer that is preventable and curable. I see it as a reflection of how I am learning to die in the role that I once played and how I am learning to be reborn into the role that comes next—the one that pushes me to resist negative discourses around medicine and illness (including statements like “...a woman who died prematurely from a cancer that is preventable and curable”) and perhaps embark on my own quest for healing in the process.

Wherever this takes me, it will go beyond writing hagiographies about the artist and activist who was Kara Muir. But it will certainly carry her fiery spirit.

On that note, if you read my previous two blog posts, you’ll know that I spent two days last summer with a community of creatives who, as part of a competitive art event, honor Kara’s artistic legacy with an annual award in her name. To wrap up the weekend, we gathered for beers and brunch at a bar and beer garden. It turned out the burger of the month was called La Ola Picante and the restaurant was called Zeitgeist. “The spicy wave” at “the spirit of the age.”

I don’t know about you, but those are words that make me feel good.

Until next time.

—Charles Austin Muir

Photo courtesy of Shadows and Strobes.