The Cost of Cancer Treatment, Part 2

I’ve talked about this before. And I’m pleased to report that, despite their representative’s assertion, BCBS has, in fact, been paying for my care. Originally, I was looking at anything from $79,000 to $130,000 for participating in a clinical trial. Instead, my family has had to soak merely $26,000 or so.

“Merely.”

It’s a skewed country we live in, with equally skewed values, that we should have to absorb this cost to begin with. I’m a US citizen. I’ve worked and paid into the system for years. I’ve been the (unpaid) reason my husband can continue to pay into the system for more than a decade; and I’ve been the (again, unpaid) reason my daughter will (hopefully) someday pay into the system, too.

Yet here I am, asking my parents to dish out money intended for their own end-of-life care to save my rear end instead. Some days, I can’t begin to contain the shame and fury I feel.

The math works like this:

$1500 per year in health care premiums (2016-2018) (which my husband and I would naturally soak anyway, but still…all part of the picture)

$4500 per year in out-of-pocket maximums (2016-2018)

$4000 per year in travel to Philadelphia for the clinical trial (2017-2018)

Totaled up, that’s $26,000 in just over two calendar years. And we have good insurance.

Factor in other household emergencies (like both halves of our HVAC system going out, at $6000 each to replace) and suddenly we’ve soaked the equivalent of paying off a nice SUV in two years. And I haven’t even factored in how much my parents are spending (driving 1300 miles round-trip every quarter) to come babysit my kid while I’m in Philly.

How many families in America can do that? So very, very few. Most try, and lose everything in the process. We’re hanging on only because my grandfather worked three jobs his entire adult life to built the inheritance we’re spending. I can’t imagine how pissed off he would be to see even more of his hard work getting bled off to medical costs long after he’s gone.

Now, could I have gone cheaper on the travel? Oh yes, much. By half. But I could’ve done it that way only because I got lucky, and have thus far been healthy enough (even while on targeted chemo) to be able to travel alone. I didn’t know I’d stay healthy enough. I had to assume, when calculating costs, that someone would be traveling with me. I had to assume there would be hotel costs, because traveling and doing the appointment and traveling again in the same day would be too much for an ill person. And I’ve often traveled with someone anyway, even though I’m healthy, simply to give myself and my parents some much-needed one-on-one time.

Yet even then, even going with the most expensive options for my travel (two roundtrip train tickets plus two nights in hotel plus three days of eating out for two people), the travel has been by far the cheapest part of the cost of cancer. I never thought I’d view cherry-picked plane tickets as small potatoes, man.

Soaking at minimum an $1800 MRI every three months? Now that’s the killer.

And that’s just the money.

The cold hard fact is that, if the 2017 AHCA had passed, I know of at least two (firmly middle class) families who would’ve been forced to leave this country permanently.

Yep, you read that right.

Had the AHCA been passed, my family (and at least one other that I happen to know off the top of my head) would have been forced to emigrate.

Why? Because the AHCA would have allowed states to waive coverage of pre-existing conditions. And had my insurer changed for any reason, my cancer would have been deemed pre-existing…as would our family friend’s adult-onset type 1 diabetes.

Even if we had gotten lucky and not had to change insurers, we still would’ve had to flee this country–because the AHCA would have required that our families offset the cost of our coverage with punishing payback plans. For my friend, who was literally born to develop type 1 diabetes in her 40s (despite being a ridiculously fit person)? The reimbursement would’ve been somewhere between $40,000 and $60,000 per year. My reimbursement cost annually, had I metastasized? $140,000.

We came only three Senate votes away from disaster.

I could never have guessed that part of the cost of cancer would be losing the country of my birth. We came three Senate votes away from turning generations of my family’s American service and dedication into, “Well, that was a nice experiment. Time to take our clan back to the Old World.”

I don’t want to abandon my country. I don’t want my family’s grand American experiment to result in failure. I don’t want to be part of a middle class that has to cut bait just to keep its head above water, all because of health care.

I don’t want to see my country populated with only those rich enough to stay and those too poor to leave.

Cancer is a fact of human life. Isn’t it time our health care politics began to reflect that?

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Sermon on Ecstatic States

The existence of mystical states absolutely overthrows the pretension of non-mystical states to be the sole and ultimate dictators of what we may believe.

William James, The Varieties of Religious Experience: A Study in Human Nature

The mystical journey seems to offer a graduate education in the obvious.

Michael Pollan, How to Change Your Mind

[My book] should in no way be associated with that great body of factual information relating to orthodox Zen Buddhist practice. It’s not very factual on motorcycles, either.

Robert Pirsig, Zen and the Art of Motorcycle Maintenance

Riding behind my dad on a motorcycle in the dark was not the place I expected to have my first experience of an altered mental state while fully, normally awake.

To be honest, I didn’t think I’d survive the experience (the ride, that is, not the altered mental state. While the ride was happening, the altered mental state was the least of my worries). Ironically (or perhaps I should say “of course”), I knew even as it was happening that my “peak experience” could not have been achieved through anything but my terror. That knowledge didn’t make the experience any less astonishing then, and it hasn’t corrupted its power since. Even covered by three decades of mental dust, that astonishing moment of mental glory still holds considerable power for me. The danger that prompted it merely serves as its wingman.

I should explain.

Anyone familiar with Florida is also familiar with the ridiculous number of motorcycles that can be found on the roads at any given moment. I’ve been on several of those motorcycles. So has my dad, my sister, my uncle, my husband, and many of our friends. It’s a pretty standard part of life in Florida—because, let’s face it, it’s the only place in the entire continental United States that you can ride a motorcycle 365. And you’ll see exactly that, no matter what road you’re driving, no matter where, and in virtually any road conditions: motorcycles everywhere, any kind, anytime, because they can. No ice or snow.

And thus the road festivals. Any reason or cause can erupt into a bike festival. Bikers for Babies of Southwest Florida. Sergeant Kevin Knight Memorial Bike Parade. Phil Peterson’s Key West Poker Run. Shoot, even just the basic necessities of finding parts and accessories for particular motorcycles have coalesced into monthly, state-wide swap meets big enough to warrant their own web pages. And there are time-honored traditions of bike races that have spun off into their own festivals, some of which last more than a week and go up and down entire coasts of that really long state. Envision that: 500 miles of motorcycles. Festivals like Bike Week in Daytona, or Biketoberfest, can pull in as many as a half million people—many of them merely spectators, but almost as many riding their motorcycles, flowing like arteries and veins of liquid metal exposed and glittering in the sun as far as the eye can see.

And the ear can hear. And the nose smell. And the body feel.

There is nothing in this world that sounds quite like the obliterating roar of several thousand motorcycle engines, all with different engine styles and times and throats and pipes. At a good festival you can find everything from tiny vintage 50cc rice-burners barely strong enough to carry the tough-as-nails, skinny oldsters driving them, to v12 car engines teetering on two wheels, their monstrous gas tanks covered in gallons of custom paint, cruising like land barges barely held in check by men as big and hairy as walruses (and often nearly as naked). Every machine’s sound is as unique as its rider, but they tend to cluster in describable groups of noise: little buzzing whines, perfectly polite puttering, phlegmy coughs of 300-pound smokers, panting huffs like big scary cats at rest. Layer those sounds together, multiply it by the thousands, and you get something approaching the roar of an angry ocean.

And the smells? My God. Take coconut sun screen, mix it with sweat. Add in exhaust, burning motor oil, gasoline, man-funk, woman-funk, cigarettes, alcohol, beer, and vinyl. Now dump it all out onto the hottest, most sun-scorched asphalt and chrome smells you can possibly conjure, and fry it. That’s the smell of Biketoberfest in Florida.

And to actually ride in that mess? Wow. Riding itself is always a complicated thing, a state of adrenalin-soaked, continual astonishment equaled only by the misery it contains. It’s a shock to discover that every road has a unique smell—one you cannot discover from inside your car, even with the windows down. More shockers: line paint is slicker than snot even when it’s dry, and the road that looks so flat from inside your car is actually a complicated terrain spanned by ruts as deep as a motorcycle’s front tire and just as slick as line paint. Roadside weeds take on an ethereally soft beauty when they wave at you in a breeze, as you sit astride your bone-shaking beast and sweat while you wait at a light. And by the way, that beast can run fleetly and quietly enough to make you feel like you’re flying, but it’s also hot enough to literally burn your skin off in an explosive instant if you touch it in the wrong place. On a motorcycle, you discover all these things…and most of all, you find that you can be happy on adrenalin, and grateful for it, and terrified sick to your guts with it all at the same time. Now multiply that experience by tens of thousands of people as far as the eye can see—thousands of people walking along the beaches and the sidewalks of Daytona, admiring thousands of parked motorcycles all done up (or decidedly, determinedly not done up), and thousands more people riding by in groups of two or two hundred, lining up to join the crawling traffic past Boot Hill Saloon in a continuous, glittering parade of motorcycles that lasts for ten straight days and nights yet never repeats, everyone there to see and be seen and drink and ride amongst strangers who “get it” as much as they do—and fuel it with beer and weed and bellowing over the thunder of the engines, and let God sort it out.

Yeah. That’s Biketoberfest in the daytime.

Then there’s Biketoberfest at night. If you think it’s wild during the day, well, nighttime is decidedly NSFW. If you’re a family man, or have your family with you, Biketoberfest at night is not your scene. At least, that’s what my dad and his friend Greg decided as the Jell-O wrestling pits started warming up (and random onlookers’ bikini tops started coming off) as the sun went down.

We were exhausted anyway after the hours of riding required to parade past the saloon. Even my father’s bike was exhausted, the engine redlining repeatedly in the heat and the stop-and-go (riding his air-cooled bike in the parade made me vow never to own one. Like a shark, if they’re not moving, they’re dying). It was a relief to all of us, man, woman, and machine, to turn off the clogged east-west drag through Daytona and head north at speed along the beach highway, A1A.

The plan was to ride north until we found a restaurant that wasn’t overrun with people. Or, if we reached the beach house that we were borrowing from a friend for the night, we would make dinner there. Greg rode in the lead, with my sister Sarah seated behind him on his perennial-work-in-progress of a bike. Its matte gray and black body became difficult to visually track against the pavement in the lengthening light. I rode on the back of my dad’s Honda SilverWing, its burgundy and chrome soon graying equally into the sun-bleached asphalt. If I ignored the evidence of the heat and the shaking and focused solely on what my eyes were telling me, I could almost report that we weren’t tethered to the road by anything at all. It was unnerving, realizing that, without our headlights, the oncoming traffic could see even less of us than I could. But it was reassuring to hang onto my dad—a rider with decades of experience—and it was a distraction to be as good a passenger as I could be. I had to lean when he leaned, and keep the wind from smacking my helmet into his. I certainly had to tap his arm and point to catch his attention when I saw something particularly noteworthy. He’d asked me to. It was our first time at Biketoberfest, of course.

We rode for miles, but the sun dipped to the horizon and the crowds kept pouring past us into town. The oncoming headlights of cars and trucks and motorcycles stretched in an unbroken line as far north as I could see. It seemed that the night crowd had the reverse of our idea: they packed every restaurant on their way into town before they got their night going.

On we rode. The sun disappeared inland to our left. The darkness descended. But neither the moon nor the stars came out. Instead, clouds rolled in off the Atlantic to our right, blanketing the sky in a velvet blackness thick enough to touch. A mizzling rain began, the drops spangling my father’s windscreen and my helmet visor with white as the oncoming headlights caught them.

My dad began to look in earnest for a place to pull off. Rain becomes actively dangerous for motorcyclists as it lifts all the dripped oil off the road surface. And line paint, already dangerous when dry, becomes a horror. I could feel the mushiness beneath me as the tires squelched around on the pavement, like wet feet slipping inside soaked shoes. But the road ahead of us narrowed to two lanes and even the restaurants gave out. There was no place to pull off. I turned to check behind us. There, too, was a line of headlights as far as I could see, the closest of them following us at not even a car’s length. I stared at the tailgater in his beat-up red car until he backed off a little. When I turned forward again and put my arm back around my dad’s middle, he tapped my forearm in a “thank you.”

What a jerk!” my dad shouted. “Always following too close!” He checked his side mirror, then shook his head. I knew without looking that the jackass behind us had gone back to tailgating. There’s nothing like having a two-thousand-pound car chasing you less than ten feet away at 45 mph to make you feel naked, no matter how much road armor you’re wearing. My back crawled.

The temperature dropped. It was a blessed relief from the heat—the mizzling rain had done nothing but loosen all the salt matting my clothes to my skin—but it was also a terrible sign. It meant more rain was coming. My dad risked slowing a little. I heard the car behind us get closer—so close I could feel its engine heat through my armor. My dad checked his mirror and immediately sped up again.

I forgot about the tailgater a moment later. Suddenly, real wind and rain hit. Roaring sideways at us, it came in off the Atlantic at a speed to stand flags straight out from their poles. It looked like thousands of knives were being thrown at us sideways. In a car, such a sudden buffet would’ve made me sway in my lane and put both hands on the wheel. But on a motorcycle…I watched helplessly as it shoved Greg and my sister fully into oncoming traffic. Horns blared, headlights swayed, and Greg wrestled his machine—loaded to its maximum weight with only two skinny people on it—back into the right lane as the pavement became as slick as a mirror. I’d have been more scared for them, but I was too busy being scared for ourselves, as the wind shoved me hard enough in the shoulder to make me think of a man trying to start a fistfight. Beneath us, I felt the back tire squirm and skip as we went over the double yellow. The bike slipped, righted, slipped again in a matter of seconds. It felt like we had no traction at all, as if at any moment the tires could simply slip out from under us and dump us both in front of that tailgating bastard at 45 miles per hour. My helmet visor went blank white with rain and glare. Beneath my arms, I felt the strain on my dad’s body as he pulled and leaned far, far out to force us back across the line. I risked bringing one hand up to tip my visor open a crack so I could see, then wished I hadn’t: the rear tire squirmed again and caught on pavement beneath us as an oncoming car swept past close enough to buffet us, its horn blaring.

If I were suicidal, I could’ve put out a foot and kicked the door.

Over and over again, the screaming wind pushed us into oncoming traffic. Our world narrowed to a corridor of pitch blackness, edged with the whitecaps of the Atlantic to our right, the thin double bump of reflected gray that was actually the double yellow line, the headlights, and the slashing rain. My dad sat tall over and over again, scrubbing at his fixed visor with one hand, trying to see past the whiteout that his windscreen had become. The rain soaked us through and the wind froze us. But far worse was the combination of blindness, wind, and howling horns as we fought northward, literally feet away from dying, either from the oncoming traffic or the tailgater behind us. We couldn’t pull off and we couldn’t stop, and we couldn’t keep the wind from trying to kill us no matter how close to the right side of the lane we drove.

My father’s fear was obvious. He kept glancing at the tiny black line that was my sister and Greg as they disappeared over and over again into the wash of oncoming headlights. A moment later, all his attention would be bent on getting ourselves out of the same trouble. Every time he cleared his visor, he glanced as far over his shoulder as he dared to check that I was holding on; he probably could no longer feel my arms around his middle. God knows I barely could, and I didn’t have to control our bike.

In real time, our terror probably only lasted about twenty minutes. But in subjective time, it felt like triple that. I went into something resembling a fugue state—unable to affect our predicament, all I could do was mentally check out far enough to make sure I didn’t do something dangerous because of my terror, but remain “in” enough to respond well to the changing conditions. I was shaking with the strain of riding well, and I could tell that fear, if I let it, would drain me further. I couldn’t imagine what the strain was like for my dad.

I consoled myself by thinking, in my strange writer-brain state, “If we survive this, I’ll be able to honestly say that not a lot of people have ever seen anything like it. And someday I’ll do my damnedest to describe it.” I’ve tried in poems, in short stories, in novels. But each time, someone has registered the complaint that the conditions simply couldn’t have been that bad—at least, not here in the United States. I laugh at their disbelief and describe it all over again, just to prove (if only to myself) that this wasn’t fiction, that I really was there: Black water whipped to whitecaps to my right, the rain slashing sideways at us. Ahead of me, the windscreen of my father’s motorcycle flooded white with the rain and the headlights of cars. The howling in my helmet of the wind and rain, my own face shield locked open at an angle to keep the glare down, allowing rain drops the size of nickels to pound my cheekbones and flick upward at my eyes. Beneath me, the hammering of the bike’s engine, the twitches of the tires as the wind shoved us over the line paint. Ahead of me, my sister, looking tiny and fragile as she rode behind Greg, even farther into oncoming traffic than we. And to my left…

The wind suddenly lulled, and a cloud broke open over the black slate of the inland side of A1A. A full white moon revealed herself in perfectly silent, serene, bone-white majesty. And beneath her, the stubble of an empty, harvested field was instantly transformed into a field of diamonds on the black velvet of earth.

The beauty of that moment struck me literally thoughtless. The sounds of the motorcycles and cars and rain and wind disappeared. The car on my back evaporated. There was nothing in that moment between that moon, those diamonds, and me. Not even me.

Thirty years later, the memory of my motorcycle moon makes my eyes fill with tears and seals my jaw shut and turns my heart to jelly. The internal silence of that moment still pierces me through. Even now, remembering it, I can almost manage to quit existing. This nutball thing I call “me” falls quiet. At the time, the physical assault of that beauty was unmatched in my experience. I was unable to react even as the wind bum-rushed us again and a car whipped past me close enough to kiss. All I could think, after several long breaths, was “Emaho!”, a spontaneous exhalation made by Tibetan Buddhists. It translates roughly to, “Marvelous!” It was the only thing I could say then, and, in all honesty, it’s still the closest thing I can possibly say now. It was as if, in that one moment, everything I’d experienced and intuited about life and its purpose were contained and exemplified and exalted in a mystery that could never be rendered even in thoughts, let alone words. And certainly not at all in a thing as flawed as my personality.

In being forced to accept, without reservation, the absolute peril of my position—the figurative baring of my existence to whatever the universe decided to throw at me in just that moment and none other—I was forced also to accept the universe’s beauty…a beauty so immense that it snatched the protective haze of thoughts right out of my head. I was left raw and open, able to think of nothing and no one other than the moment laid before me, just as bare and raw and open as me.

And the stunning part—the realization that has been thirty further years of meditation and experience in the making—was realizing that every moment of my life is potentially as raw and open to me, if only I could be as open to it.

***

It’s taken me a long time (and a lot of sorrow) to come to that conclusion. It’s a truth that’s there even in the midst of great personal disaster. That silence—that glistening, silent beauty so vastly larger than I am—is always there. I’ve glimpsed it again and again over the course of my life, and most of all when I’m in extremis, smacked upside the head by a moment of great danger or loss. Moments like these: The perfect lacework of frozen tree branches above my head, as their trunks literally explode around me in an ice storm. A perfect sky and birdsong and people laughing in joy, as I realize that I am miscarrying. A car accident, everything around me blown to slow motion as the breaking glass glitters by. My first sparring match in taekwondo, every eyelash around the dark eyes of my black belt opponent rendered in perfect, onyx detail. The distinctive sound of a three-round burst coming from the direction of my daughter’s elementary school, the positions of every tree around me drawn by the finest pen, the empty echo of the concrete sidewalk beneath me, the perfect thunder of my heart in my ears.

Psychologists know this phenomenon well, and it’s called flashbulb memory. When a human being hears terrible news (“where were you when?”), or witnesses a disaster firsthand, or personally endures trauma, our survival instinct pushes our brains into the highest, hottest burn of processing they can handle. But it is processing without conscious thinking. Adrenalin spikes basically cut the brain almost in half from side to side. The upper and forward parts of the brain, having to do with complex thinking, scale back on energy use. The lower and hindmost parts, having to do with physical control and perception and chemical panic, burn all that freed-up energy. Our instincts roar into control. When facing great danger, we literally become reduced to our most animal state. As therapists are fond of putting it, “You’re not there to reason with the tiger.”

We’re all familiar with how an adrenalin rush to the brain feels, but there are perfect evolutionary reasons for all the parts of a flashbulb memory to exist. Our perception of time slows to a crawl because we need to clock the speeds of everything moving around us in the complex mechanics required to decide if we can flee. Our recall becomes pinpoint accurate so we can process every detail that could be pertinent to our ability to fight. Our bodies feel like they’ve caught fire, as every nerve and cell report their exact positions so that our proprieceptive senses can prepare us to freeze (thus my shaking on the bike on A1A). We didn’t evolve to have flashbulb memories because they’re cool to look back at. We developed them as a byproduct of basic, adrenalin-fueled, in-the-moment survival. Being able to recount every moment of the scary thing that happened to you today is of benefit to the tribe, to be sure, but only because you survived it. As one internet meme has it, old age is a privilege denied to many. I would posit that, without the physical and mental processes that gave us the byproduct of flashbulb memory, we wouldn’t still be here as a species to enjoy our age.

Many neuroscientists are coming to the conclusion that we’ve developed many ways to cheapskate on higher thinking—especially those high, hot burns that produce moments like my motorcycle moon. One of those cheats is an entire system of mental shortcuts that allows us to access a bunch of our brains at once, cheaply in terms of energy, but leaving out entire whacks of perception and memory at the same time. A further energy savings (and further caveat) is achieved because those shortcuts only run in directions deepened with repeated experience. Anything novel (whether external stimulus or internal emotion) is simply omitted. Neuroscientists call this system the default mode network, or DMN. Think of it as staircases in a building that only connect some parts, and leave others out because we’ve never needed to combine those parts before. For spreadsheet users, it can be thought of as a macro. It’s quick and easy to reel off a macro, instead of writing a whole bunch of individual commands. It also uses much less energy when you save time on a computer. Considering that the human brain burns about 40% of all the energy we feed our bodies every day, that’s an important savings in fuel—not to have to seriously ponder what we think about our boss when we follow his orders, or the motions involved in how to open a door, or whether we’re the sort of person who even worries about that sort of thing.

Because the alternative—being in mental high gear all the time—would be too exhausting to bear. Lest you think I was the only one affected so strongly by our moonlight ride, I’ll say only that two grown men and two grown women, having ridden motorcycles for almost an entire day in brutal heat, having had nothing to eat since midmorning, crawled off those motorcycles in the dark at the beach house, said almost nothing to each other, and went to our respective beds without even mentioning food. Dinner never happened for us, and we didn’t care. Even our instincts had been exhausted at that point. All we could do was sleep to restore ourselves. Living every day like that would, frankly, kill us really quick.

The DMN saves us from experiencing the routine parts of our lives like that. It regulates everything in our perception by regulating the stories we tell ourselves about what our lives should, on a usual day, look and feel like, and what they should mean. Everything from how capable we feel to whether or not the construction on our road is a good thing to whether or not we should take our usual motorcycle ride that day gets regulated by the DMN.

A lot of people recognize the DMN best when they drive a car; some even have a handy nickname for it, “autopilot.” You don’t need to develop new value judgments about your morning commute, so you generally don’t. You just do the drive and that’s it. The problem is that autopilot can leave out important details that will impact how we feel about something. If you’re on your way to work and you turn the car the way you always have, and only then see the construction barrels blocking the road, well, that can be a bit of a shocker.

And if we think and feel consistently the same way about something often enough, the DMN will ensure that we continue to think and feel that way long after the actual situation has warranted a change of heart. That’s how women end up staying with abusive boyfriends long after the point that outside observers start shaking their heads. Or how people still say they hate someone long after that someone has changed their behavior for the better. Or how people will gravitate toward one political pole and stay there even if their party starts acting like a monster. Or how a person continues wearing the same clothes they wore as teens because they’re convinced they look good, even if their middle-aged paunch makes everyone else grimace. You keep acting that way because you keep thinking that way because you’ve always thought that way.

If you’re operating on autopilot, you aren’t catching the real-world changes that you need to accurately gauge your health and well-being. And for damn sure you’re not going to see the moon and a field full of diamonds in the dark.

***

As Michael Pollan put it in his book, How to Change Your Mind, “Huston Smith, the scholar of religion, once described a spiritually ‘realized being’ as simply a person with ‘an acute sense of the astonishing mystery of everything.’ Faith need not figure” (HTCYM, p. 136). And he’s absolutely right. God didn’t speak to me in the dark, or in the diamonds, or even in the blaring horns of oncoming cars. He didn’t need to. I was in a perfectly altered state all by myself, yet the universe met me there nonetheless. As Pollan continues on the same page, “There are other, stranger forms of consciousness available to us.” Imagine you could somehow sustain the energy depletion of living in that struck-dumb place, where even an empty field looks like a revelation. What would “normal” consciousness look like to someone like that?

I think it would look an awful lot like a prison made of blindness, with thoughts the bars on its windows.

The model of the DMN is beginning to suggest (as Pollan put it) a “grand unified theory” of mental illness: the theory that minds gravitate either toward entropy or order. Both exist on a continuum. Both are regulated to a greater (order) or lesser (entropy) extent by the DMN. And the moments that circumvent the DMN—moments of great joy or great sorrow, great beauty or great danger—send our thinking into freefall, with no bedrock of thought to stand on. We become dependent entirely on the raw input of our senses. This happens because, in that moment of extreme input, we literally don’t know what to think. The DMN fails because we’ve been faced with novelty so intense it reveals our entire previous experience as lacking for an explanation.

At its best, an entropic mind can be explained as cross-discipline, creative, out-of-the-box thinking that is contained and shaped but not really impeded by the DMN all that much. (Thinking can be mapped in an fMRI. Entropic thinking looks kind of like a skimpy plate of homemade spaghetti, just enough lines running in all directions to imply something substantive. Some of those lines are a bit thicker than others, like gloppy homemade noodles, which indicates greater intensity and value to the person having that thought. Minds on entropy-inducing drugs like LSD or psilocybin look like a heaping plate of machine-cut rainbow goddamned vermicelli, no one thought any more compelling than another, all valued equally, and going everywhere.) When we tend toward entropy, our views of everything in our lives (including ourselves) is expansive, inclusive, and often distinctly unafraid. We can draw connections to far-flung things really quickly and easily. We see novelty easily and are often drawn to it, in fact. But at its most extreme, entropy looks like disordered, randomly-fired thoughts with almost no interference from the DMN, in which our sense of who and what we are and our actual place in the world has no reins on it. Ever met a homeless person who thought he was Jesus? That’s life with absolutely no interference from the DMN. That is psychosis. (Please note, I’m not sure what psychosis looks like in an fMRI, because I don’t know if anybody’s ever managed to wrestle an unmedicated Jesus into the bore. But I have to assume it makes that plate of vermicelli look positively orderly.)

Order is best thought of as hard control, a rigidity in our thinking. We have very sharply defined roles in our lives, and deviation from said stories (about our gender, or faith, or culture) results in bad, bad things. However, remember how I mentioned that the mental shortcuts of the DMN can be made only with repeated use? Not only can such shortcuts only be made with repeated use, they’re deepened by it. And in the extreme end of ordered thinking, all other paths of thinking are omitted, just like any other novelty. That’s where depression, anxiety, and OCD happen—when our thoughts have gotten so stuck in the same, awful, circular rut for so long that literally no other thought is possible. An fMRI of extremely ordered thinking looks nothing like a plate of spaghetti. It’s more like what would happen if a preschool math teacher tried to teach children about shapes by having them glue a few paltry sticks of dried, broken spag along a few bold lines on a sheet of paper. The rest is simply empty nothing. It’s as if other patterns of thought simply can’t exist.

Pollan was talking about psychedelic experiences at the time, but I firmly believe that any ecstatic state (whether self-induced, life-induced, or medication-induced) represents a complete suspension of the DMN. We’re so blown open by whatever we’re experiencing—a dangerous motorcycle trip, a sudden trip to the hospital, or an acid trip—that we have literally no idea what to think about it. Our upper brains shut down, reroute all energy to the experiencing animal brain, and our animal brains go hogwild making connections until we reach a point where we can get quiet and can catch our breath. Then and only then will our upper brains ponder our experience, process it, and decide what stories we’re going to tell ourselves about it…what shortcuts we’re going to use to route through or around that experience in our brains, so we can get on with the more hum-drum everyday business of living.

But the problem with ecstatic states of any kind is that we simply can’t get through them completely. If we have any entropy left in us at all—any ability toward magical thinking—we will always come at least a little undone around those memories. They will continue to exist like boulders in the stream of our thinking for the rest of our lives. That’s why, thirty years on, my motorcycle moon can still make me cry. Perhaps, like boulders in a river, with sufficient time and strength of water, those boulders can be worn to pebbles and someday to nothing. But frankly, most human beings aren’t around long enough to get to that point.

And, in the case of the beautiful blown-open moments, who would want to?

***

So what about that beauty? Why is that there in the middle of my most intense experiences, even the bad ones? What possible evolutionary purpose would the recognition of beauty serve? Wouldn’t it waste precious mental and physical resources better applied to survival? And why, in God’s name, is it the most animal part of us that responds to that beauty? Why can we not see that same beauty when we’re safe, and the upper parts of our brains are functioning? Why can’t I see a perfect day except when I’m having a miscarriage? Or a perfect moon unless I’m about to get hit by a car?

Part of the answer is the DMN—the heart of my overly rigid, anxious thinking. I can’t be open to the beauty, the surprise of crossed-wire, out-of-the-box thinking, if I’m too busy feeling damaged about the bad things that happened in my past, or being scared about the bad things that might happen in my future. It’s not like the beauty is only there when I’m about to die. It’s that I’m most often shocked out of my head and into the beauty when bad stuff is happening.

I think Michael Pollan described it perfectly: “A platitude is precisely what is left of a truth after it has been drained of all emotion” (HTCYM, p. 251). We have to have space and time to consider what’s happened to us in order to generate an emotion about it. When an event that big and new happens—when we have a moment that shocks us out of thinking and into simply experiencing—we really only experience it truthfully in that moment. Everything after is a rationalization, a platitude that we apply to it in order to drain it of enough emotion so that we can contain it. That’s why Buddhists practice so hard to live in the moment, every moment, exactly as it is; without judgment (for good or ill) is the only way to truly experience our lives. In vipassana meditation, I think the Buddha left us a roadmap for suspending an overactive DMN.

But how does the beauty always meet me there? If we’re using the hardcore science of the DMN as an explanation of how humans think, then why the beauty? What possible evolutionary use could that have?

Well, the cynic in me references the other Pollan quote in my epigraph: “The mystical journey seems to offer a graduate education in the obvious.” Most everyone who comes back from a major shakeup (whether on a motorcycle or LSD) reports experiencing great beauty, or all-encompassing love. Picture the usual trippy-hippy spiel: “God is love, man. Everything is love. We’re all one.” Compare that to my moment with the moon: “There was nothing between the moon and me, not even me.

They sound pretty much the same, don’t they?

As it turns out, Pollan and his neuroscientist buddies have a pretty compelling argument for that, too:

When all that sensory information threatens to overwhelm us, the mind furiously generates new concepts (crazy or brilliant, it hardly matters) to make sense of it all… [The brain] work[s] to reduce uncertainty by, in effect, telling itself stories.” (HTCYM, P. 310)

And who do you think has a better shot at surviving great trauma: the ape who tells himself that the world is grim and empty, or the one who recognizes a kind of harmony even in the midst of disaster? The one who tenses up, assuming he’s about to be blown out like a candle, or the one who relaxes, thinking he’s about to be met by a benevolent God?

Having seen enough accident statistics about DUI, I know the answer to that one. It’s the relaxed drunk who survives the accident. It’s not his hapless victims, screaming at the judgment coming straight at them. The victims die. The drunk survives, wondering what happened, knowing only that he was blissfully ignorant until he got sober.

***

I can, at times, be a rather cynical person. By the time I was ten, I’d learned to laugh in the face of an adult who promised me good things. But then there’s this thought, and it keeps coming back, whispering in my gut like a heartbeat that never quite started, yet has never gone away: I didn’t expect to meet beauty in that terrible place. And yet, there it was.

I’ve come to believe that every moment of a human life is like any form of power—physical power, mental power, emotional power, literal electrical power, the figurative power of money, any of it—it can all be used for good or ill. It can all be interpreted for good or ill. It’s not the fact of our power, it’s what we do with it. Yes, I’ve been handed some pretty frankly bad moments in life, but I’m grateful—so very, very grateful—to have been born able to see the beauty even in the midst of those disasters. Because, well, without the beauty in the beast, what’s the point? Who would want to keep on living if there were no beautiful moments to look toward?

Does that realization make me less of a cynic? Perhaps, now that I know my DMN may not be entirely trustworthy.

Does that realization make me more of a Jesus-freak? Decidedly not. I don’t need God to tell me what beauty is. I know an army arrayed with banners when I see it.

But does that realization make me want to find that moon again, and sit with it, and remain open to all that it has to teach me? God, yes. Because sometimes ecstasy isn’t screaming, or even joy, but silent serenity. Sometimes, an ecstatic state can be quietly, imperfectly, beautifully, human.

Thrill of a Gain

A platitude is precisely what is left of a truth

after it has been drained of all emotion. 

–Michael Pollan, How to Change Your Mind, P. 251

Positive thinking experts turn me off. Really off. As in, “If you mention a gratitude journal one more time I’m going to snap your head clean off.” All you need to do to get me to leave an event is to tell me a motivational speaker is on the night’s bill. Even if I’ve paid good money to be there.

Why? First of all, because it’s exhausting for an introvert like me to be rah-rah, even for a short while. Second of all, because it’s a big fat lie. No one can maintain a positive attitude forever–not unless they’ve been hit with Joker’s gas and laugh themselves to death on the streets of Gotham. And third, because all those positive thinking exhortations aren’t being honest about how my brain actually works.

I’ve smacked headfirst into this fact my entire life: the moment someone tells me I can’t or shouldn’t do something, what do I do? Try it. Every time. Like I’m a recalcitrant four year old instead of an (ostensible) adult. And being told I could die young (even if I do manage to perfect a bunch of behaviors!) has made me dig my heels in even harder on some of my worst habits. The depression, anxiety, and mental/spiritual exhaustion of carrying the cancer “glass of water” for the last two years has simply driven that spike in even harder, though for different reasons (deathwish, anyone?).

And as it turns out, I’m not the only one who acts like that when change is necessary. It’s all of us.

TED Tali Sharot

Go ahead, watch it. I’ll be here when you get back.

***

Let me tell you, a cancer diagnosis and a 72% chance for a later potential metastasis makes that “poop hitting the fan in slow motion” visual from Dr. Sharot’s talk really darkly funny.

In cancer “support” circles, the notion of positive thinking as the best weapon against cancer has been turned into a platitude, a truth that has been drained of all emotion. It’s not a real bulwark or action plan that recognizes the mental realities of dealing with a scary diagnosis. It’s a shorthand bludgeon that many doctors and nurses use to interrupt a moment of real emotion happening in front of them so they can move on to their other patients.

Instead of smacking cancer patients upside the head with “have a positive attitude/lose weight/eat right or you’re gonna die”–which is essentially nothing more than a fear statement, which science has proven doesn’t work for most people in the long term–why don’t doctors use Dr. Sharot’s work?

Dr. Sharot’s TED is all about working with my own most unfortunate tendencies–the tendency to bury my head in the sand, to get evil and do worse things to myself because I can’t afford to. Now that’s honesty–recognizing the faults built into my mental systems so that I can work with them, and succeed despite them. And (hopefully) not pass my nasty mental buck on to everyone else later.

So what would such honesty look like in a clinical setting?

Over the last two years, I’ve learned I have to stage my answers to the ubiquitous question, “How are you doing?” (If I’m talking to an acquaintance, “Hanging in there” is both honest enough not to make my heart hurt, but bland enough to allow said acquaintance to comfortably start nattering on about themselves instead. My assumed physical or mental discomfort should never be the subject of anyone else’s prurient interest. If they’re genuinely concerned not just for themselves but for me–if they want to find out in order to better help and protect themselves and their loved ones by knowing, and I’m among those loved ones–then okay, I’m willing to talk real cancer turkey with you.)

But when a doctor asks the same question, the type of doctor he/she is gets revealed pretty quickly. A frankly bad doc just wants a list–a general, dispassionate discussion of physical symptoms. I’ll know what I’m dealing with if the doc takes that list and runs (literally away) with it. And I’m happy to let them do so. But if the doc then asks, “How are you doing emotionally,” I’ve learned to be honest in my answers…even if they’re not prepared to hear them. Because otherwise they’re not going to get better as doctors, and I’m not going to get better as a patient. (And by better, I don’t necessarily mean physically. That’s pretty much out of my hands at this point. I’m talking about getting and keeping my heart and head solid–honest–with the state of my body and soul to the very end, whether that end happens when I’m 80 or 49.)

The problem is that, up until now, even the best doctors have had no answer for me about how to get physically/emotionally more skillful. (The absolutely best ones have at least been honest in their emotional reaction to my answers. They’ve been genuinely sorry to hear them. I appreciate the hell out of that. But even for the best doctors, that’s as far as their repertoire goes.) Their only answers have been the platitudes–exercise/eat right/positive thinking–with no emotion or honesty behind it. And those platitudes–what dozens of doctors and nurses and cancer patients (!) have flung at me in response to my honest statements, like, “I’m not doing too well emotionally. Anxiety is trying to eat my lunch. What would you recommend?”–are essentially no different than fear.

“Exercise/eat right/positive thinking.” That’s not truly positive, skillful thinking. That’s nothing but a dressed up fear statement. It’s not “here’s what you do.” It’s “do these things or else.”

As Dr. Sharot put it, “The thrill of a gain induces action. Fear induces inaction.” That’s neuroscience. That’s the way my brain (and everyone else’s) is physically built. Why in God’s name are doctors still trying to use fear statements to motivate their patients? Dr. Sharot’s power company does a better job of motivating their customers than oncologists do.

So, when a doc asks me how I’m doing, I might finally be able to answer him or her honestly. “I haven’t been doing terribly well. But I think I may have a plan for how to do better.” Any doc should nod and say, “Good!” But a good one will hopefully ask, “Oh? How?”

My reply might now be, “The thrill of a gain.”

It sounds so…motivational. [shudder]

When cancer takes so much away, it’s important to plan for what’s left. The way the conversation between doctors and patients is currently constructed, it’s as if the honesty–cancer takes a bunch away from you, permanently–is omitted. That lack of honesty then impedes my ability to recognize the facts quickly and begin to plan for what’s left. I spent so much time with the agony over what was gone (and the fear of what might be coming) that I wasn’t looking at what was still available to me. I’ve been paralyzed into inaction by the fear.

I can’t guarantee that I’ll make big things of this new thought process. It’s, well, new, and coming hard on the heels of a long period of bad times. And as I mentioned before, I can only be motivated so far or so long by any tactic, even well-recognized, positive, motivational [shudder] tactics.

But I must admit…it’s really fragging nice to think about a gain for the first time in two years.

Resonance

One of the joys of being a compulsive reader is finding resonances between books I’m reading concurrently. If I’m cynical about this phenomenon, it’s part confirmation bias and part “nothing new under the sun.” (As the old saw from my MA in English goes, “All stories can be reduced to Man v. Man, Man v. Nature, or Man v. Himself.”)

But the joyful part of me loves these moments that stick out–these echoes back and forth between disparate books–because I believe firmly they’re signs of what the Buddha would have called “Right Path.” Like those red, white, and blue shields alongside the interstate that let you know you didn’t, in fact, make a wrong turn at Albuquerque, resonance tells me I’ve found books that are aligned not just with each other, but with me, too. (As another old saw goes, “When the student is ready, the teacher will appear.”)

So the books I’m reading at the moment are Michael Pollan’s fascinating look at the clinical history and use of psychedelics called How to Change Your Mind, and the mindfulness-based stress reduction (MBSR) how-to book, Full Catastrophe Living, by Jon Kabat-Zinn. Yes, both books deal with the mind (in absence of actual cancer in my body to focus on, I’ve got to deal with the stress in my head somehow). So therein lies a lot of potential for resonance, simply because, well, it’s just Man v. Himself, isn’t it? (Or in this case, Woman v. Herself.) People have used both psychedelics and meditation to literally change their minds for millennia. But while one of the books is a history of the clinical use of magic mushrooms and LSD in the US, the other is effectively a self-help book based on Buddhist vipassana meditation practice. They’re not even shelved in the same spot in Barnes & Noble, let alone my local library (615.788P  and 155.9042K, respectively, if you’re curious).

Yet here is a paragraph from How to Change Your Mind, in which Pollan quotes a widow talking about her husband’s eventual death from cancer, long after his experience with magic mushrooms in a clinical trial:

“‘It was a good death,’ Lisa told me, a fact she credits to the people at NYU and to Patrick’s psilocybin journey. ‘I feel indebted to them for what they allowed him to experience—the deep resources they allowed him to tap into. These were his own deep resources. That, I think, is what these mind-altering drugs do.’” HTCYM P. 358

And here is a paragraph from Full Catastrophe Living, in which Jon Kabat-Zinn describes the reaction the patients at his MBSR clinic often have after completing their intensive eight week training:

“Usually people leave the program thanking us for their improvement. But actually the progress they make is entirely due to their own efforts. What they are really thanking us for is the opportunity to get in touch with their own inner strength and resources, and also for believing in them and not giving up on them, and for giving them the tools for making such transformations possible.” FCL, introduction P. lix

If I were grading these paragraphs in a stack of essays from a freshman rhet/comp class, I’d check right quick to see if these two authors were roommates. Switch one POV, and change the fact of someone dying to someone living instead. That’s it. Other than those two changes, these are effectively the same paragraph. And when you factor in the extended chapters of Pollan writing about the “transformations” people effect on their own lives after being guided by clinicians through the use of psychedelics (as just another “tool” of psychotherapy), well…

Amusingly, I’m managing to make this sound like an indictment of some sort. Maybe it’s just the cynic in me. Maybe all human stories really can be reduced to nonsense. Or maybe three years was too long a time for me to be an English teacher. 😀 But somehow I don’t think so. I think both paths–the psychedelic and the vipassana–have great promise when used properly, when the path is followed with heart.

Those who know me well know how rarely I quote Scripture (unless it’s in sarcasm or jest). But Jesus had a thought about following a difficult path with heart, too, and said, “In my father’s house are many mansions.” He was offering a vision of comfort and sufficiency to his followers, despite his death. I think it’s a good thing that paths as varied as psychedelics and vipassana can also offer comfort, sufficiency, and a mental transformation toward living no matter when the dying. When I read resonances like these two paragraphs, it gives me the unexpected joy of finding two paths vibrating to the same note, like one tuning fork humming when a similar one is struck. It tells me that there are indeed many paths to follow through life–many mansions in the Universe’s house–and they’ll all have heart if I bring mine along for the ride.

 

The Poison Path

I’ve written about peacocks before. In Buddhism, the peacock is a good and powerful symbol. The ancient myth is that a peacock’s brilliant plumage is created by the peacock’s eating poisonous things, like snakes. So the teaching is that anybody can eat poison (figuratively, anyway) and be transformed for the better by the experience–so long as they take the time to understand the experience and surrender to all that it offers, even (and probably especially) the unpleasant parts.

Tell any chemotherapy patient about the peacock in Buddhism and they might either smack you in the face, or fill their houses with peacocks.

Poison in general has an important place in Buddhism. The Buddha Guy tells the story of the poison arrow like this:

A person approached the Buddha asking, “What will happen after I die? What was my form before my birth? What is the source of all we see? Answer these questions and I will become your disciple.” The Buddha replied in this manner: “A man is shot with a poison arrow. Wounded, he refuses any aid, demanding answers to his questions. Who shot the arrow? What is the poison? Of what wood is the shaft? From which bird came the feathers for the flight? Surely he will die with these questions still unanswered.”

Yeah, that’s a nuh-duh moment. If you’ve been shot with a poison arrow, don’t ask questions, moron. Pull out the fucking arrow.

But what if the circumstances of your life require that you get shot with a poison arrow? And further require that you leave that arrow in? And for a long time?

The answers for those questions get really important, really quick…and perversely, they’re not important at all. But before I get into the reasons why I believe that, I have a different path to introduce.

There’s another tradition that references poison, and it appears (also perversely) at the fringes of Western New Age frippery. It’s called “the poison path.” It also uses the peacock as its symbol. And it deals with those questions in a Dark-Ages-witchy way that I’m not entirely convinced is healthy…but at least it’s got the stones to be honest about its rage.

I believe that human life is a comedy and a tragedy at the same time, and so are the answers to those questions. What do you do when you have to get shot with a poison arrow in order to save your life? Nothing. You will either live, complete with the memories of all the trauma you endured (tragedy), or you will die (comedy). And if you live, you’ll tell others how you did it, when you really have no idea what precisely spared you (tragedy). If you die, you’ll tell no one that you’ve learned the most important lesson there is, that you have no control over any of it, and that the only peace you can make in your life is to make peace with your death. It’s the biggest form of confirmation bias ever invented…and there’s the biggest comedy.

It’s that play of light comedy and darkest tragedy that makes life so beautiful, practically iridescent with contrasts. Hence the peacock. And the poison path believes that you have to revel fiercely in all its iridescence to make the trip worth it.

Everyone wants to believe that somehow, they’ll be the one to live through the great big garbage bag that is cancer…and that they’ll experience an explosive flowering of the spirit because of the experience. Psychologists even have a term for it: post-traumatic growth. Post-traumatic growth is held up as the Holy Grail of psychological recovery from trauma. This idea that we can be transformed by suffering if only we can retain a positive attitude–that we can always become amazing versions of ourselves after going through a trial by fire–is pervasive in oncology wards. I’ve watched a dying man, gray-faced with a literal decade of agony, beat himself up for not maintaining a positive-enough attitude about his situation. I’ve come to believe that positive attitude is as full of bullshit as the giant prints of beautiful flowers framed on the walls of nearly every oncologist’s office I’ve ever been in.

Seriously. Flowers. In a place that force-feeds poison and cuts off parts of people in a scorched earth attempt at healing.

Either the flowers are there as a blatant attempt to make us patients more quiescent, and hence easier to treat—which makes those flowers manipulative bullshit…or they’re a genuine, though kitschy, attempt on the part of the staff to remind us of the beauty and fragility of life—which really makes them bullshit. We’re living that message, thank you. Be told you’ve got a 50/50 chance of seeing your next birthday, and let’s see how beautiful and fragile you feel. Being beaten over the head with that message just makes me mad.

I’ve been in precisely one oncologist’s office that didn’t have flowers. They had cows. Cows, for God’s sake. As cynical as I can sometimes be, I thought at first the cows were sending the message, “Line up and take your place in the abattoir like a good little cow.” But the waiting room the cows had been placed in wasn’t some sad little shoebox with no windows, only flower prints hanging on walls made grubby with time and suffering. It was a genuinely beautiful room, a gallery easily fifty feet long, painted a gentle spring grass green, bathed in sunlight from a continuous bank of windows opposite that were easily five feet high. Comfy chairs and couches nestled together in family groups. Big dining room tables with half-finished puzzles laid out on them stood between the groups, ready for anybody to drag a chair over and move the puzzle along. The cow portraits were tiny, perhaps six by eight inches each, lined up singleton along the inside wall of the gallery. And as I walked the length of them, examining each, I realized the tiny cows were individual, perfectly realized little portraits of somebody’s cows. A whole herd of them. Every one of the portraits had a name, and a unique face. Their individual personalities shone through in the portraits. That’s hard to do. That’s art. And that’s really hard to do with creatures as stupid as some cows can be.

I adored those cows. They made me grin every time I was in there. Not because they weren’t still lining up for the slaughter (because I have no doubt that, eventually, the subject of every one of those paintings ended up in somebody’s belly somehow), but because they were lined up for the slaughter and some painter still managed to find their individuality, their humor, their beauty. I loved those goofy cows—especially the one with its tongue up its nose. Because that cow was going to die, and die young, and nobody told her, and there she was, sticking her tongue up her nose. Nobody told her she should die with dignity, or that she had to die having achieved something amazing because of (and through) her suffering. She probably died with her tongue up her nose. Post-traumatic growth is the Holy Grail of recovering from terrible experiences, yes…and it’s also the perfect way to re-traumatize a patient by telling them they’re not suffering the correct way.

Don’t give me goddamn peacocks. Give me a cow.

Sermon on Reading

For my father’s birthday a few years ago, I gave him a signed first edition of Brian Jay Jones’ book, Washington Irving: The Definitive Biography of America’s First Bestselling Author. My dad is an American history buff so confirmed that he volunteered for years in period costume at a historic house in Virginia. He can tell you all about the American Revolution and the Civil War. He gets excited about landmarks named after people I don’t even recognize—and I consider myself quite a history buff, too. So when I saw Washington Irving at the book table at last year’s James River Writers Convention, and found out that the biographer was a panelist at the very next discussion thread I’d planned on attending, well…the annual “Dad’s birthday conundrum” was solved. As I predicted, my father was touched by the inscription, consumed Jones’ biography in a single day, and declared he loved it.

So why wasn’t my dad at that convention, getting his own inscription? And why is that beloved, signed first edition now sitting in my house, forgotten under an avalanche of my husband’s gaming magazines and my daughter’s elementary school homework?

No, my dad didn’t die. He’s alive and well, and still consuming nonfiction like a whale shark eating krill. Long story short: Washington Irving joined the Fleet of Regifts—books that have gone from me to my dad, and then come back.

My love affair with books began because of my dad. Many of the best books I’ve ever read were his recommendations. The first books I remember reading were chapter-book versions of his favorite classics, like Treasure Island and The Three Musketeers. My most enduring memory of my father, by sheer weight of repetition in my head, is of him sitting in his recliner, reading. I remember being enchanted by (and frightened of, in equal measure) the cover art of his paperback editions of The Illustrated Man, Heart of Darkness, Casino Royale. I sometimes managed to sneak his books out of the “finished” stack and read them when he wasn’t looking. It’s how I became a confirmed James Bond freak, and why I chased Bradbury and Conrad. They were my gateway into amazing territory, names in bold print on the map of my adolescence and teen years: Tolkien, Lovecraft, Howard, MacLean, King, Butler, Atwood…

I started writing stuff of my own when I was ten. I won awards every few years or so throughout school. And by the time I applied for college, I knew I was a writer whether I earned my living doing it or not. Books weren’t just my escape. They were my life’s blood.

But also about the time I turned ten, the books my dad brought home suddenly became cheaper…much cheaper. No bookstores. Library only, or at most a few tatty paperbacks purchased from a garage sale for a dime a pop. It took me a month of allowances to earn the money for a single paperback from our local used bookstore—and they cost only $1.10 each. I remember after all this time because, like my family, I was sweating every penny…for the next decade.

During those years, my dad’s reading tastes changed, too. Frankly, he became a lot less fun. Character studies became biographies, spy novels became true crime, scifi became “true stories of survival against all odds.” Not to say anything against these genres (or nonfiction in general), because they can be excellent—I can’t imagine a world without Zen and the Art of Motorcycle Maintenancebut I found myself getting lonely in the scifi aisle of our library. By the time I was a teenager, Dad was on the other side of the library from me, literally and figuratively.

After that decade of living tight at my parents’ house, all I wanted was out. I applied to only one university because it was the one I wanted that I knew I could afford: a state university, with my tuition covered by scholarships and boasting the best English program in the state. I had more writing awards under my belt by then—including a scholarship I’d gotten just for reading a lot. My nearest competitor had read less than half my book list. I’d put in hard, glorious time with books, reading three and four at a time and changing the stack out twice a week for years, and I wanted more than anything to go write a few of my own.

When my dad asked me what I wanted to major in, I know I looked at him like he’d lost his mind. “Creative writing.”

His response was an anguished look and a plaintive whine. “Oh, Kathryn, not the liberal arts. You’ll never get a job that way.”

I took that the way any teenager would—poorly. Not only was my dad so clueless he couldn’t have guessed my choice of major from the ribbons and certificates decorating my room, but he obviously thought I wasn’t good enough to make a living as a writer. “Two roads diverged in a wood,” indeed. When did fiction become not worth reading? More specifically, when did my fiction become a waste of my father’s time?

Most readers I’ve ever met became one because of someone else—a parent, a beloved aunt or uncle, a grandparent. We readers aren’t just in love with the smell of books. We’re in love with the person who gave reading to us. All my writing and reading comes back to my dad, the person who opened the doors to the life of the mind.

So what do you do when it feels like that person is telling you it’s not worth it?

It’s taken me years to calm that angry teenager back down. My dad wasn’t trying to hurt me. He was trying to help. He’d lived tighter than any human being should have to for nearly a decade at that point. He’d watched the economy tank, struggle, and tank again. Through it all he’d been terrified about his ability to keep food on his family’s table. His ten-year slide out of “fun” reading and into “reality” books was his way of telling me that books weren’t just about fun—that in the real world, publishers might not be clamoring for every half-baked piece of writing that I tossed off on a lazy afternoon. He was warning me that I might have to work even harder for my writing than I worked for my books.

God knows he sure did.

Now, after a further twenty years of scraping by, even biographies are wearing thin for his reading tastes. The heavy lifting in Washington Irvingseveral hundred pages of good research—is too light. Books about surviving “against all odds” are about the only thing that keep his attention now, because that’s what he’s been doing all this time. Surviving. Against all odds. With two kids in tow. And one of them was even more starry-eyed than he used to be.

So for years, he’s been giving his birthday gifts back to me. Because I’m still reading “light” fare. Because I’m still writing. Because somehow, regifting his books to me is a way of keeping our lines of communication open. We’re still across the library from each other, but the books can whisper our messages back and forth.

They’re saying, Thanks for the gift.

Sermon on Gifts

My grandmother’s profound gift was to dare to believe that, perhaps, there was nothing she couldn’t do just because she was a girl.

This is a far more difficult gift to arrive at than you might think.

She was one of thirteen children (only eleven of whom made it through their childhoods) who belonged to a suddenly single mom at the height of the Great Depression. Her mom engaged in what we today would recognize as “serial monogamy” in order to feed her kids–but, back then, her choices were viewed as “fallen.” Her kids were virtually alone in the world. My grandmother went on to get married and have four kids of her own, to work a farm, and to work as a newspaper reporter for the Medina Herald in the 1950s. (Let that sink in a minute: a self-taught woman holding her own in a newsroom in the 1950s.) My grandmother would proudly recount how the editor of the paper once bawled out a copyeditor who “corrected”–and actually screwed up–the grammar in one of her stories. “‘If you see Betty Marsh’s name on a story,'” the man had snarled, “‘you don’t touch it!'” It was her gift to the world (and to her daughters), to have her work justified by a man in front of a room full of her male peers.

My mother’s profound gift was to internalize the worth of a woman as fact. She embodied that fact for my sister and me, and for hundreds of her students over the years, as she became the first of her family–male or female–to go to college, the first to get a Master’s degree, and the first to become a teacher. She taught it to me in exactly that many words: Kathryn, there is nothing you can’t do just because you’re a girl. She proved it in a million ways over the course of my childhood, too–being a teacher, an artist, a scientist, and a capable woman of her hands. She was and is a powerhouse, leading by example.

Fast forward a few years. I was at the time (and still am) an overweight, middle-aged woman with an autoimmune disease. Deciding to be a stay-at-home mom had put a serious dent in my self-worth. In my own eyes, abdicating the working world to take up the traditional homemaker role was a kind of betrayal of all that my mother and grandmother had worked for. (I’ve since realized that’s bunkum–they fought for me to have the choice, dummy! But still…)

I’d been stumbling and fumbling my way through learning taekwondo. I was a red belt, racking up teaching hours as part of earning my way toward a black belt. And I’ll be honest, there were many times that my teaching at the dojang felt like the only grown-up, useful work I got to do. (There are only so many times you can sing a nursery rhyme or play Candyland before you feel like your brain is leaking out your ears.) So, after a series of successful breaks at various tests and tournaments, I decided that I wanted to attempt four one-inch-thick pine boards with a single back kick. I had enough chutzpah available to me (even fat and flawed and in my forties) to announce my intention in front of my master.

That’s when I found out that, if I succeeded at this hare-brained plan, I would become only the second woman in the history of my dojang (at thirty years and counting) to do it.

No pressure.

I was so nervous that I got only two hours of sleep the night before, and even that much required Benadryl. That day, I felt like I was only half aware of my body as I navigated the bedlam of the in-house tournament. Scores of people swarmed barefoot in and around arenas marked by red and blue floor pads. Students in crisp white doboks snapped kicks and punches as they were judged on forms; their doboks sagged and their faces ran with sweat as they faced off in sparring matches; splinters went flying as they broke boards in ones and twos. I performed well in my own forms competition, despite being ragged with lack of sleep (God knows that, at my age, lack of sleep is a given).

But as the time for my attempt came closer, a whisper began to lap the room, becoming a sustained buzz, and then becoming outright stares and pointing, as I came to the floor with my stack of boards in hand.

Four boards, each ten inches square and an inch thick. No pieced boards held together with glue, or balsa demonstration boards that could be broken just by holding them wrong. These were solid pine, as all the boards at my dojang are, cut from a 1×10 with a miter saw.

The smell of pine sap in my nose, the nerve-sweat on my hands, I must have checked how the crowns in each board stacked a dozen times before I handed it off to my holders. I bowed, both to them and to the waiting masters. The holders–four men–got into position, experimenting with handholds until the corners were secure and their fingers were mostly out of the way.

The entire dojang fell silent. I shrugged the shoulders of my dobok into a comfier position, tugged my pants legs up a little, put up my fists, and settled my bare feet into free fight stance.

The first attempt was a disaster of nerves and lost balance, as I wobbled at the back half of the spin and unloaded the kick on my holders’ arms. I missed the boards entirely. My own laughter was the loudest of all as I lined up for another try. The holders reset.

At the last instant of the second kick, I lost my balance again, thumping my foot off the stack, shoving the holders back instead of breaking cleanly through.

I glanced at the spectators and could see the need of every woman in that room. Their husbands were merely intrigued by my attempt, but the women themselves watched me with fists clenched, their heads raised at full stretch, as if willing the boards to break would make it so. And I realized, we may be sixty years past that editor in the newsroom of the Medina Herald, but women still need this.

My masters added holders, hoping that more pairs of hands would give the solid resistance I needed to overcome my technique failures. Eight people now stood in a solid wedge behind my boards, four sets of hands holding, four more people holding the holders, like a pyramid stack of cheerleaders laid over on its feet. I forgot them, and the spectators, and the masters watching; my world became a single ten inch square of white pine.

On the third attempt, one of the boards gave a despairing pop, but though all eight people rocked backward with the force of my strike, the stack remained whole in their hands. The buzz went around the room again, all female voices, tight with need and worry: Come on, do it!

On my fourth attempt the stack broke. The room went wild. The gathered parents of dozens of students applauded, the women whooping. The ranking male master in the room felt the need to make an announcement about my achievement. The ranking female master (and owner of the dojang) grinned quietly as she gave me a medal. The tournament resumed, with the male students who knew me as the nice mom-like instructor looking dazed and perhaps a little alarmed at the idea of how much power I’d been holding back. All the female students of every age and belt rank stood taller, smiled bigger, and threw kicks with a bit more power and panache.

But even as I kicked that last time, I knew something had happened to the bones and discs in my back. That hitched-up feeling persists to this day and will, at some point, require surgery. I know I will never attempt that break again. The risks are too great. But I still want to do it again, because the break wasn’t clean. I didn’t achieve it in one, or even the tournament regulation three, attempts. It took me four. And that despairing little “pop” on attempt number three meant that a board had been compromised, however slightly. Even though all the boards stayed in one piece before I destroyed them, that break still feels unfinished to me. I want to do it cleanly, with no question about the boards or my performance. I want that break to be flawless. On some days, anything less than flawless feels like failure…

…until I remember the story that one of the parents present that day later told me. Her daughter, three years old at the time, had been at the tournament, too, cheering for her older brother. She had seen me hit that stack of wood over and over again. She had seen eight full-grown adults being shoved backwards by my attempts. But she didn’t have the word “attempt.” She didn’t have the words for “competition” or “medal” or “board breaking” or “tournament,” so she used the words she had: to that little girl, I had “defeated eight men.” In my worse moments, when I despair that my life has been of no importance to anyone but my daughter, when I despair that any of the work of my life might do lasting good in the world, when I despair that the work of a stay-at-home mom can’t compare to the work of a working woman, I remember that little girl’s words.

To her, my attempts weren’t failures. They were moves so powerful that I knocked eight full-grown adults off-balance with a single kick. (By the end my holders weren’t all men, coincidentally, but still…point made.)

My gift to my daughter–and, apparently, to every female of any age at that tournament that day–was to prove a woman’s power, regardless of her paycheck. There was, of course, no actual “defeat” (unless you count the damage done to my vertebrae). But despite living in a culture warped by lopsided power dynamics and victimization, we’re now part of a generation of women who know what they’re worth. We have discovered we have the right to say “no,” or the right to say “yes”–to whom we want, when we want, for whatever reason why. We have the right to do whatever we choose, and we can do it with our heads held high. And we believe (correctly) that we have the power to back it…and eight men…up.

And to my great-grandma, my grandma, and to Mom, I say: Thanks for the gift.