The inscrutable art of the telenovela.

Nine pm, and the half-front-toothed person from down the hall is loitering in our bedroom after his nightly insulin shot. He keeps stealing looks at the TV screen, paused in Netflix binge mode on the Watch the Next Episode screen with the little text teaser below.

April’s cancer goes into remission, but her return to work isn’t as smooth. Meanwhile, Leo languishes in a coma.

So, you’re watching a cancer show? he finally says sheepishly. Why would you do that?

I don’t know, I say. I guess it makes me feel a little normal. Plus it’s really terrible and it makes me laugh.

Terrible how, he asks.

Terrible like characters bawling Well, maybe you forgot, but I have CANCER!!!

Oh, he says. That kind of terrible. Like calm down. We know. We’re sorry about your cancer but please stop yelling.

Yes, I say, exactly like that.

So my horrid guilty pleasure is out of the bag. A Netflix show that originally aired on—um—ABC Family. It’s called Chasing Life and it’s about a reporter in her 20s who is diagnosed with leukemia. The best part about it is that it is based on—and styled after—a Mexican telenovela. The dialogue is spectacularly expository.

“I wasn’t actually on the Eco Club field trip in Florida, Mom. I was looking for Natalie, my half-sister who you knew about but never told me existed, to see if she might be a bone marrow match for April, since I am not—and without one she might die!!!”

It’s fantastic. In its best moments it’s a little like if instead of Buffy being a vampire she had a blood cancer. Except this girl is no Sarah Michelle Gellar.

But I can’t stop watching.

Why would you do that? he asked.

For now I’m blaming my addiction on the fact that I’ve already watched every single British police procedural known to man, but all ironic campiness aside, there’s clearly something I’m getting out of the show. Someone who is writing it must have had cancer or done some actual research—they get enough things right. The best friend who freaks out and downloads a cancer symptom app on her phone (CancerAnswers!). Looking around a crowded room and wondering if there is anyone else who has cancer but just isn’t “showing” yet. The terror of a support group—intended to help—that offers you an in-the-flesh rendering of your worst nightmares of what’s to come.

The way no one really knows what to say to you. The dysfunction cancer highlights. The way it also gives your life a kind of beautiful shape or focus. The incredible kindness and generosity you feel and are witness to.

Anyway, I keep coming back to Montaigne’s phrase about being in suspicious country. These are strange times. My stupid hives are back. I was unreasonably excited about the arrival in the mail of this little doo-rag-like hat called a Chemo Beanie that is one of very few things that does not completely annoy my scalp. And after weeks of bouncing out of bed, wallpapering the mudroom, moving furniture, and landscaping the backyard (hey, steroids.), I am suddenly completely uninspired and exhausted. All I want to do is nap and find out if April is going to hook up with Leo when he wakes up from his coma.

I will see the Queen again on June 3rd. I’m supposed to ask her all my pre-mastectomy/is the chemo working freak-out questions then. At the last visit I asked the PA how I was supposed to emotionally prepare for being one-breasted for the foreseeable future.

Well, I think of you as an Amazon who removed her breast to better fight with her bow and arrow she tried out, clearly a little unprepared. You are a one-breasted warrior!

Come on–enough of that. We are not in a telenovela. Please just let me talk to the Queen.

So, the toothy/nosy one is finally asleep, as is the cheeky/cuddly one. And John just spontaneously brought me a bowl full of mini Nilla wafers sprayed with whipped cream, so I’m pretty sure I have to go now. Take that, April—you may be all uber-sexy-cute with your bald head and cancer chic weight loss, but not in all of Season One has Leo brought you a Nilla-wafer-based dessert concoction. Bawl on that for a while.

Sorry, but it seems the existentialists were right.

Written by John.

Life is full of absurdities. Whether or not you take stock of them or ultimately build your worldview around them is, of course, entirely up to you. But there arefew, if any recesses of the universe free from absurdity. Cancer treatment isno exception. Indeed, it is one of the paradigmatic realms of absurdity. I can’t catalog all the absurd things in our lives the past few months, but here is an inexhaustive list:

  • Nina getting cancer treatment at Duke on the same day as her mother, with whom she’s been travelling to Duke Cancer Center for treatments for the past 8 years;
  • Nina going to one of her mom’s recent cancer treatments with her bald pate and being asked by a nurse why she didn’t have any hair;
  • Nina developing hives after her treatments, a condition she only just helped nurse me through last year;
  • Nina facing the prospect, simultaneously disfiguring and absurd, of spending a significant amount of time having only one breast—not zero breasts, not two breasts, not even the cinematically absurd Total Recallesque three breasts—but one asymmetrical breast;
  • Me trying to channel my angst into failed home “improvement”projects, such as the pull-up bar made from plumbing supplies or the unfortunate shower curtain with the Jerry-rigged support in the middle, making it open effectively from neither end;
  • Me stress/coping-eating frozen Chobani For Kids so often that it makes up 30% of my overly generous current daily calorie intake;
  • Me taking up basketball again at age 39 after not playing for the past couple years;
  • Me icing my leg, or my knee, or my arm, or my face, or whatever ails me after playing basketball;
  • Me dragging myself out of bed the morning after playing basketball.

It’s not that our lives have been that terribly hard, per se. It’s just that they’ve been riddled with a common theme of the absurd.

Our current situation has me thinking. Nina is done with chemo (for now at least).She is starting the period where she’s most likely to feel “normal” for a good long while. Surgery is still a month off and, with any luck, there will be no significant medical interventions before that. To some extent, this has been borne out. On the other hand, she dealing with another outbreak of hives, she has no hair, and she feels pretty crappy a lot of the time. It’s a new kind of absurd situation.

So what do we do with life’s absurd slings and arrows? Do we take to drink? Maybe, just a little, but alcohol makes me feel kind of yucky. Game not worth the candle kind of thing. So do we seek solace in nature? Nina does, and that’s been a real help to her, but I’m not such a huge fan of nature. It’s messy and unpredictable. Do we escape on vacation? Again, Nina probably would, but she’snot in great health for the beach and I don’t like direct sunlight and both sand and water give me the howling fantods. Do we seek out God, or some other form of spirituality? Some might, but it’s not really my thing. God kind of gives me the fantods, too–in a different but not necessarily unrelated way from direct sunlight. Do we purchase way too much music on Amazon? Yes, absolutely, but that’s problematic in a financial kind of way and simply has to be stopped. Also, it has severely diminishing returns as a coping mechanism.

No, our solace has to come from someplace else. In this instance, I’ve been hoping to find it in the dog-eared collection of excerpts from Kierkegaard I bought in graduate school, almost 15 years ago. Because what could be more consoling than sitting up late at night and perusing the works of one of Western Civilization’s most notoriously difficult thinkers? A man whose work was deliberately obscure as a means of organically demonstrating life’s difficulties to the reader, Søren Kierkegaard is my current drug of choice. And I don’t care how much Nina makes fun of me for it (hint: a lot of making fun has happened).

Kierkegaard thought a lot about the absurdity of life and has plenty to offer on the subject. In one of his more famous works he mocks those who are busy in the world going about their business, finding the whole of it absurd. He compares these people with a woman whose house is ablaze who, in her confusion, rescues only the fire tongs. “What more important things, do you suppose, will they rescue from life’s great conflagration?”

It’s hard to say what Kierkegaard really thinks, because he wrote pseudonymously, hiding behind layers of fictive narration. But he didn’t mean for us to simply stand at a distance from life and laugh at its absurdities. While he did not think that simply engaging in ordinary commerce was the meaning of life, he also did not think that life’s great conflagration was actually meaningless.

Kierkegaard was a Christian, but not a dogmatist. For him, God was still the ultimate aim, the “meaning of it all.” But the means to divinity was highly existential, very much of the world and found lurking elusively in its everyday drudge and sludge. No platonic ideals. No Augustinian City of God. Man has to suffer through the seemingly endless parade of absurdities life presents, the greatest of which is maybe faith itself—the requirement that we believe in something that cannot possibly be and requires mankind to accept the impossible.

Because of his focus on existential themes, Kierkegaard is linked as a precursor to Existentialist thought made famous in the 20th Century by thinkers such as Jean-Paul Sartre and Albert Camus—and later satirized in countless turtleneck-clad, chain cigarette smoking parodies.

One of my favorite passages in Camus is from The Myth of Sisyphus. The title is the classical myth/parable: Sisyphus pushes a boulder up a hill over and over only to see it fall back down again, for eternity. The myth is reductive, but we can all relate to Sisyphus. We all feel like we’re pushing the boulder sometimes. Knowing it’s going to roll right back down.

Camus builds on this to craft a metaphor of his own. He says authentic existence is like trying to walk for a lifetime on a razor’s edge. To one side is belief, or religion. It is a comforting alternative for many people, who want some relief from life’s razor sharp way. To the other side is despair and, ultimately, suicide,also a form of escape from the razor’s edge.

The Great Problem of Human Existence is to meet the challenge of knowingly walking on the edge of a razor and still keep going along that path. Although Camus rejects religion, his vision is very much like Kierkegaard’s embrace of the irreconcilable in his Christianity. We have to accept what we cannot possibly reconcile. We have to forge a path and make our own meaning out of something that provides no discernible answers or direct comfort.

So, first conclusion: whatever you think of European Existentialists and the excessive clove-cigaretted darkness of their teachings and turtle-necked followers, you have to admit: they kind of had a point. Life is filled with absurdity. Yet we strive for meaning in it and, for the most part, we don’t give up on life.

Second conclusion: balancing on the razor’s edge, or, if you like the Christo-Existentialist vein better, accepting the unacceptable and learning to live with it, is freakin’ hard. And, despite these things being thoroughly examined by very smart people a long time ago, I am not sure we have advanced the ball that much in terms of how we deal with them.

The nurses at the cancer center who couldn’t stop tittering about Nina’s lack of hair when she showed up to help her mom were astonishingly unprofessional from one point of view. But from their vantage, her presence there—the sight of a cancer patient serving as support for a cancer patient—really upset their normal paradigm. That’s not how things are supposed to work! Why, it’s simply ABSURD! When people are confronted with some of life’s more audacious absurdities, it’s not surprising that they don’t always react well.

I number myself among these people. I have continually been surprised by the simple fact of my own ageing. I’ve played basketball for years. In some ways I have grown progressively better as a basketball player with the added experience of years (all things being relative, “better” has a particular meaning here that does not correlate all that well with “good.”). In other respects, most notably athleticism, I have grown duller and, well, less good. But the biggest changeis my body’s reaction post-basketball. I have soreness in places where I did not know one could have soreness. I ice things. I heat things. I take Tylenol. My wife admonishes me not to overdo things and hurt myself. I overdo things. I hurt myself. I dutifully play the stereotype of the ageing man playing games that are too young for him. And yet I am somehow, despite a fairly keen awareness of all these things, somehow surprised by all this. It is absurd.

Now, my inability to conscience my own growing feebleness is incidental. It is not the stuff of major life events. But it shows the pervasiveness of absurdity in our lives. We’d all probably agree that cancer is a major life event. And it, too, is suffused with absurdity (see supra Nina’s situation). How do we arrange things so that we can simultaneously understand the absurdity and still manage to function?

If I understand Kierkegaard at all—and I’m nearly certain that I don’t—I don’t think there is any answer beyond the question. The whole point is to understand the situation and still manage to function. That’s it. That’s life. That’s Christianity, in Kierkegaard’s 19th Century iconoclastic Danish proto-Existentialist version.

So, the issue comes down to individual decisions, day to day choices, about how to cope with the absurdity, how to measure our responses, build meaning towards our ultimate goal, whatever we want to call that: god, nature, karma/dharma, spirit, family, basketball, assiduous avoidance of sand, water, and direct sunlight, etc.

I’m frankly not very good at this. I get lost in the absurdity all the time. Or more accurately, frustrated by it. The pointless repetition of daily tasks takes on a particularly frustrating hue for me when daily life includes Nina’s cancer diagnosis and treatment, her Mom’s situation, which has been going on for 8 years,or the situation of the people we see at Duke Cancer Center.

How do I continue to referee the kids’ arguments over Marvel superhero necklaces? How do I clean both the blood from Freddy’s nighttime nosebleed and the urine from Benny’s absurdly poor aim from the general vicinity of our toilet? How do we tackle the mundane, when the mundane is, ultimately, deadly for everyone? I am not going to tell you how because I can’t. Can we, astonishingly, somehow “succeed,” at least in continuing to walk along narrow path of not-despair and not-dogma? I feel like we ought to be able to manage. But I could no more explain how to someone than fly to 19th Century Copenhagen.

This is just a long, PEDANTIC way of describing the feeling I’ve been having about being where we’re at. We haven’t been posting much lately. Mostly I think that’s because it’s hard to describe the state we’re in. It’s not that compelling a story in some ways. Neither here nor there, waiting for something that we can’t avoid and cannot wait to get over with, yet are anticipating with all the excitement of a root canal we know is going to go horribly awry. The calm before the storm that we already know is going to knock the shutters off the house. But viewed another way—through a painfully long connection I’ve made with Existential philosophy—we are experiencing the quintessential human condition. So aren’t you glad you waited for me to describe it? I thought so.

If you have answers to these questions I suggest that you create yourself a pseudonym—maybe something in French, Latin, or Danish—and write them down. And please share your conclusions in the comment section.

Johanes Duberstinius

Pilgrim-ish.

Early May, cool and rainy—mostly lazy drops—and I head down for a walk along the park.

I followed the exact path the other morning with a friend. The neighborhood was fierce: blossoms and sunshine and fragrant mulch and my blood coursing with steroids. Our pace was the babble of second opinions, counseling for kids, the possibilities of meditation, single or double mastectomy, disfigurement of the female form and the horror of mirrors, reconstruction: to build again or not.

I was breathless and full and grateful for clear-thinking friendship and conversation.

Today, I walk it alone, and the whole time I’m thinking about Annie Dillard’s essay “Seeing” from Pilgrim at Tinker Creek where she writes: “It’s all a matter of keeping my eyes open.” Rhapsodic in that piece—almost ecclesiastic—she reminds us again and again to clear our vision of expectations, to try to see without understanding.

Impossible.

Yet today: a brown bunny still as a yard ornament, the littlest mud puddles in the name THOMAS carved into the concrete path, a bed of purple lilies taller than children, and the creek entirely strange from all the rain—its strong current beneath the footbridge wild as the ocean currents of my childhood and brief angry rapids at the wide bend by the storm drains. All is changed.

I have always loved the word pilgrim. The thin rhyming “i” sounds in both syllables. The surprising seriousness of “grim.” It’s from the Latin peregrinus—meaning foreign. Same root as peregrine, like the falcon. Bird of prey, fastest member of the animal kingdom. Adventure married to strength and purpose—tinged with the strange.

Growing up in Massachusetts, it meant pageants with songs and construction paper buckle hats and white collars, field trips to Plymouth and cramped old ships and too much salt water taffy on the bus ride home.

Later, in college, reading A Pilgrim’s Progress—that desperate, tortured journey. The idea of walking with sacred purpose. The idea of seeking. The ominous landmarks: The Valley of Humiliation, The Doubting Castle. There is always room and time for a journey. Every road trip of my twenties justified in this way. Even my thirties.

“After thousands of years we’re still strangers to darkness, fearful aliens in an enemy camp with our arms crossed over our chests,” Dillard writes in “Seeing” as she watches dusk come to Tinker Creek, night knitting an eyeless mask over her face.

Culturally, when it comes to illness, dying, death—those darknesses—it seems we are still so very much Plymouth Pilgrims—all fear and fretting and forts, and a strong sense of our own alien-ness in a hostile land. We don’t begin to know what to do with ourselves. We cross our arms over our chests and try to look on the bright side as we are starving.

I think the tumors in my breast are getting bigger instead of smaller. They ache. They protrude. Maybe it’s in my head—but I’m not sure, the doctors aren’t sure. No one’s sure of anything. I’m terrified.

One of the best things I’ve read about that puritanical Pilgrim lot is that—beside God—they really loved wine and clean laundry.

My favorite Pilgrim is the poet Anne Bradstreet. Her poems are, honestly, a little beyond me, but she knew about real life. She was torn from her homeland and family and she spent three months seasick below deck coming to America. She suffered smallpox, paralysis, and TB. She gave birth to eight children in ten years. She was the first woman to publish a book of poems in the New World (at age 38!), despite being relegated by her community to an intensely domestic role. And she gave her poems good solid names like “By Night when Others Soundly Slept” and “Verses upon the Burning of our House, July 10th, 1666” and “A Letter to her Husband, Absent upon Publick Employment.”

She arrived from England with Gov. John Winthrop and his company of Puritans on June 14, 1630, on the flagship Arabella—a ship that reportedly carried three times as much alcohol as water on its passage across the Atlantic. Nearly all 10,000 gallons of wine had been consumed by the time they set their sea-weary feet on soil in Salem, Mass.

Before they left England—as they waited anchored just offshore aboard the ship for the right weather conditions—a group of them, including Anne, braved the white-capped swells to row back to Yarmouth to scrub clean their linen neckerchiefs one last time before setting out for the ultimate wilderness. I just love that. It’s a beautiful, human kind of coping.

Clean laundry and wine. Maybe a little Pinterest, maybe a little gardening.

John Winthrop noted in his journal that before they ever saw the New World, they smelled it: “so pleasant a sweet ether, as did much refresh, & there came the smell off the shore like the smell of a garden.”

Pilgrim. Peregrinus. Foreigner. I am trying to uncross my arms in the darkness. I am trying to see without understanding.

This afternoon on the back deck there was a ruckus in the upper branches of the giant oak. Two or three crows were loudly mobbing a hawk, and the hawk was sitting on the branch stoically ignoring the whole to-do. What is this? I was thinking. Couldn’t that hawk make mincemeat of those crows in about 3 seconds if it chose to? But then in a minute or so it was over—the crows having moved on, the hawk still perched on the branch, its genius eyes working the horizon.

I’m terrified. I’m fine. The world is changed and exactly as before. There are crows in my hair. I have no hair. I kind of wish I had a black buckled hat and the world’s cleanest neckerchief.

Chemo causes nausea but helps cure cancer; steroids help with nausea but cause kray-kray (and swelling!); and life causes death but is also its opposite.

Written by John.
Nina’s been taking steroids during her chemo treatments. It’s an SOP, it helps deal with side effects and boosts the system as the drugs are beating it down. But, as noted in previous posts, this past cycle she developed a hive reaction and has had to be on steroids for a prolonged time frame.
If you have taken steroids, you know they have their own side effects. You get swelling, increased appetite (which aid swelling!), and a revving-up of your whole system that feels kind of like a really bad caffeine high that never goes away and doesn’t taste like coffee. It’s a buzz that, if you don’t find a way to deal with it, can drive you sorta nuts.
When I was on ‘roids last year for my silly-sounding-in-theory-but-I-swear-to-god-totally-excruciating-in-fact hive condition, it drove me to sleeplessness, mania, and beyond. My mania, which was driven by a compulsive need to find a focus that was not too demanding but totally absorbing, was music. I read about music, listened to music, downloaded music, and generally felt that I needed to experience everything related to music found on the Internet. There’s a music critic who has cataloged more than thirty years of his reviews alphabetically on a website. I worked my way through from A to Z. It was, well, let’s just say it’s in the past now.
Nina’s interests are different than mine, happily. But, like me, she’s found she has a steroid induced need to focus on something. She’s found manic solace on Pinterest pages dedicated to gardening. She has been planting and designing around our new deck. It’s really beautiful. It’s also astonishing how quickly and thoroughly she has planted and designed. THOROUGHLY. Like, I go to work and when I get home there might be four or five new plants, a bird feeder, a cute hanging solar lantern, and some mulch that wasn’t there that morning. But, even as much work as she’s actually done, I’m pretty sure the hours spent in the backyard are dwarfed by the hours spent swiping her way through Pinterest boards filled with gardening ideas. There’s a glazed look that accompanies the swiping that is maybe a little disconcerting, but it’s a kind of coping mechanism I understand well.
Anyhow, it’s interesting to me that my manic reaction to prolonged steroids took the form of a purely internal (I wore headphones so as not to annoy anyone else who might be sleeping in my bed while I was music maniac-ing), self-focused activity, whereas Nina’s mania is focused on beautifying our family atmosphere and space. This is interesting, but not surprising. That’s kind of true for our whole dynamic. Our ideal relationship status, given our respective talents and limitations (Nina’s talents, my limitations) is that I take care of Nina, and she takes care of everything else. And that has continued, it seems, into our game of Cancer Land (I’m working on a copyright for this, but it may include such wondrous elements as: Chemo Castle, Nausea Swamp, Breast Lump Mountains, Mamma Mammogram, Queen of Triple Negative Breast Cancer, Duke of Surgery, etc.).
The title of this post is possibly a little irreverent. But I also kind of mean it. Whatever you have going on when you get cancer, that’s what you have going on when you have cancer. Nina is a little diminished in terms of her various capacities, sure. But she’s also basically the same person on cancer + steroids as she was beforehand (This is your wife / This is your wife on steroids PSA forthcoming). Her saving grace, from my point of view, is that before she was diagnosed, she was already a mindful, responsible, thoughtful person, with a lot of vision. She was always thinking ahead, visualizing our future and trying to plan for it, and worrying about all the potential catastrophes that lay ahead.
Now we’re right smack in the middle of one of the bigger catastrophes she could have envisioned (and, to be clear, she has envisioned virtually all of them, it’s kind of another hobby of hers). She’s still thoughtfully visualizing and realizing our lives. I mean, she’s losing her mind a little, sure, and she wants to peel her face off sometimes and run screaming into the night, holding her face, I guess, at that point, which would be awkward. But she’s basically holding it down. And I’m reasonably certain that, if it were me that had cancer, I would be awkwardly avoiding dealing with any future consequences or decisions and pouring thousands of hours and dollars into a solitary activity that benefited only me, and at that fleetingly, instead of dedicating myself to making our collective situation better.
I’ve always marveled at NER’s humanist abilities: relationship management, actualization of living spaces, and visualization of future life, for example. But seeing her be thoroughly who she is through these current trials really brings home how important it is to be your best self as much of the time as humanly possible, because every moment we have is one moment closer to the end of the time in which you’re able to do your thing. Nina does her thing really well, and she does it pretty much all the time. I thought that was worth mentioning. Because life really is killing all of us, but I think if you do it right, that doesn’t matter in the end. Now if I could just figure out the doing it right part. Maybe after I download a little music…