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Happy Canyon, 2002 – 2016


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Tonight, I went to Happy Canyon. This is hardly news; I’ve been going to Happy Canyon far too often since my third birthday, when I first attended. This year is special, though, not because it’s Happy Canyon’s 100th birthday (it is), and not because it’s my 55th birthday (which it also is) but because this year My Son the Tubist is playing in the band. We all have certain benchmarks in our lives; for me, this is one. I’ll be writing more about it later, but for now, let me share one of my very favorite Happy Canyon memories–my son’s very first visit to a place where I’ve spent an embarrassing amount of time–or I would have, if I was capable of being embarrassed over going to see the same show, over and over again, as often as I can. For years this was so I could shout at an Old Family Friend, who for years got his legs cut off four times a year. It was also because I am something of a connoiseur of Falling Off Horses, and Happy Canyon being what it is, it is the rare show that doesn’t include somebody biting the dirt. But I digress.

This story is included in Benchmarks: A Single Mother’s Illustrated Journal, but it says something I love about my life–and have loved about it for a very long time. It also serves as an excellent scene-setter. When I get around to writing about this year, you’ll have a good idea of what’s going on. This will allow me to focus on the Really Important Stuff–the tuba brumming away out of sight, a deep gold river of sound connecting my son, out of sight in the orchestra pit, and me, high in the darkened stands. Grab a cushie for your tushie (it’s necessary on those Hard Happy Canyon Benches), fill a flask with hot chocoloate or coffee laced with the alcoholic beverage of your choice, if you’re so inclined, grab a Pendleton shirt, sit back, and enjoy the show.

Painted snowcaps turn gold, then pink, as the first stars twinkle in the evening sky. Dust and summer night lie heavy on my skin. The narrow wooden bench bites into my thighs. I shift. The lady pressed far too tightly against my left side heaves a martyred sigh and looks pointedly at my too-generous hips.

“I can’t get comfortable, Mommy,” whines five-year-old Alex.

“I know,” I say quietly. “Stand up ’til it starts.”

He huffs, squirms, and stares around the crowded grandstand. “Why are the mountains pink?”

“Because the man up there is shining a pink light on them.” I point to the light guy, high overhead in his little nest in the steel girders.

“Why?”

“So it will look like it’s getting dark.”

“But it is getting dark.” Alex’s chubby finger stabs at the stars glimmering above the painted skyline.

“I know.”

“Where’s the man?”

“Up there.” I point again to the light guy’s airy perch in the rafters overhead.

“So why does the man have to shine that pink light on the mountains? Why can’t he just let them turn pink by themselves?”

“Hush!” hisses the lady beside me.

“Forget the mountains,” I say hastily. “Look, it’s starting.” I point down into the sawdust-covered arena, where a tall man in a cavalry uniform is escorting an elderly Native American man to center stage. I recognize Chief Clarence Burke’s heavily beaded buckskins and feathered war bonnet. The cavalry officer looks more like a warden than an escort. I think they might have chosen more tactfully. But this is Happy Canyon. It doesn’t pay to be too critical.

The packed grandstand falls silent. Chief Burke raises his arms and closes his eyes. His cracked, cadenced voice drifts on the night air, faint and rough as pine smoke.

“What’s he saying, Mommy?” Alex asks, tugging on my arm.

“Shhh,” I whisper. “Listen. He’s welcoming us.”

The sounds float over us, as they must have floated over the trappers, the explorers, and the missionaries. Chief Burke falls silent. His arms drop. The cavalry officer steps up to the microphone. “Chief Clarence Burke of the Umatilla Indians welcomes you to Happy Canyon.” They turn and pace out of the arena. Music swells, lights go up on a line of tipis, and we are in Happy Canyon.

I settle back—at least as much as one can settle back on a narrow, unpadded wooden bench.  Alex stares open-mouthed at two Native American men carrying a deer down a switchback trail to the village. A deep, unmistakably Native American voice informs us that one of the young men has shot his first deer and is now eligible to marry. It’s been nearly ten years since I last visited the canyon, but I remember this part and cringe in anticipation.

This is how it has always gone: The happy couple stands on the second level of the four-level stage. Somebody backstage plays a scratched recording of “The Indian Love Call.” Then the newlyweds walk down the path to the first level, perform a wedding dance with their friends and family, and go into a tipi at the edge of the village, presumably to make sweet, sweet love.

Happy Canyon may have been an annual visit for me for nearly twenty years, but it’s Alex’s first time, and I’m not sure that his manners extend to enduring a crackly recording of a song that sets even my teeth on edge.

I lean down and whisper, “There’s going to be an awful song now, honey, but I need you to just not say anything, okay?”

“Okay,” he whispers absently. “What are they doing with that deer?” His eyes never leave the arena, where the village has awakened and people in richly beaded buckskins go about cooking, fishing—there’s a pool down there—visiting, trading, celebrating the young man’s first kill, and preparing for his wedding. I dig in my purse for backup. “Here, have some chocolate milk,” I whisper, thinking that the bottle will muffle any cries of pain or outrage the scratched record may provoke—and in the meantime help him forget about what seems to be happening to the deer.

He sips, still gazing at the village. A woman’s voice, still unmistakably Native American, informs us that the wedding is being celebrated. Sure enough, the couple, their friends, and family are dancing the wedding dance to the beat of drums. There has been no “Indian Love Call,” and I’ve never heard a woman narrate the pageant. Well, well, well. The times, they are a-changing in the canyon.

The dancing ends and the happy couple heads for the end tipi. Village life goes on. Trappers, explorers, and missionaries arrive. A lone wagon creaks in. The woman’s voice, deep, cadenced, and filled with old sorrow, tells of a clash of worlds. Fighting breaks out. A white girl is dragged into the village, screaming. A few minutes later men on horseback pound in, firing blanks into the air. Chaos erupts. The girl leaps onto a running horse and escapes. The villagers scatter.

More wagons roll in. Pioneers climb wearily out and gather around the campfire cooking, singing, and dancing. We in the stadium sing with them: “Skip to my Lou,” “Sweet Betsy from Pike,” and “She’ll Be Comin’ ’Round the Mountain When She Comes.” Feathered war bonnets appear among the bushes, and more fighting breaks out. The cavalry arrives. A man in a frock coat rides in and the tribal leaders negotiate. The woman tells us how the tribal elders signed away their birthright without knowing it because it had never occurred to them that one might presume to own the earth.

At last the end comes. The tipis are struck and loaded onto horses. The village dies. The woman tells about life on a reservation created from wasteland, about the struggle to maintain a cultural identity in a world changed beyond recognition, about working with one’s enemy for the common good, about salvaging life from destruction.

“When are they coming back?” Alex asks.

“Never,” I say, and I am sad.

The lights go down. “Wham wham wham wham-wham smack!” echoes in the darkness. The lights go up on a frontier town. Dance hall girls walk the streets. The town drunk staggers across the sawdust arena and tumbles into the pool where the Indians fished, pops out, and hotfoots it back to the saloon. The Pony Express rider flashes in, switches horses, and flashes out.

The stagecoach rolls in. A redheaded couple emerges. They supervise the removal of their steamer trunk from the rear of the coach, open it, and pull out eight children, all attired in bib overalls and red yarn wigs. A group of pigtailed Chinese men trot over, hands tucked in sleeves, bowing. The blatant ethnic stereotyping appalls me. I am amazed it has survived. The laundrymen don’t seem to find it troubling; they hustle the family into the laundry. A few minutes later the family emerges clean and pressed. Boys in flesh-colored tights plunge into the pool to emerge dripping and screaming.

“What’s going on?” Alex asks.

He might well ask. Happy Canyon has no plot. Rather, it’s a whole group of subplots, which, because the performance is live, using live animals, antique props, and amateur performers, may or may not happen the same from night to night, or from year to year.
“Just watch,” I say. A mismatched couple drives in, the wife tall and muscular, the husband delicate and natty. He grabs a dance hall girl and bends her over his arm like Rudolph Valentino. His wife spots him and, together with the other god-fearing women of town, attacks him with a broom. The Chinese laundrymen rush out, pull him to his feet, and drag him into the laundry. Moments later he emerges clean and pressed. His wife tosses him onto the buggy seat and they drive off.

“When are the Indians coming back?” Alex asks.

“They’re not,” I whisper back.

The dance hall girls do a lively can-can to a rollicking tune that has us all clapping and stamping. The pageant is nearly over. A Native American man mounted on a pinto pony races across the arena. An American flag flutters over his head. Man and pony zigzag up the trails high into the scenery, and come to a halt on a painted mountaintop. The flag flutters in the golden spotlight. The orchestra strikes up the national anthem. We stand.
Ten years ago, the response was half-hearted. Some stood, hands over their hearts. Some stood laughing and talking. Some slouched in their seats. But this is September 12, 2002, a year and a day after the World Trade Center fell. Today there are two spotlights on the stage. One is trained on the Native American man, his pinto pony, and his flag. The other rests on three uniformed men standing on another painted mountaintop across the stage. The men are three tanned local boys with sunburned, muscular necks, hair like ripe wheat, heavy shoulders. I suspect they spent their summer driving trucks and combines and going into town on Saturday nights to drag race on Main Street and drink beers with their girls in the parking lot up by the old Carnegie library. I wonder where they will be a year from now.

But next year is next year. This year everyone stands, and everyone sings. We sing about rockets’ red glare, bombs bursting in air, and how we saw through the night that the grand old flag was still there. We sing about spacious skies, amber waves of grain, purple mountains, abundant harvests, and about how this land was made for you and me, and I feel again the tug of this land where I was born, and I know again that while some people can leave their birthplace and remake themselves in strange lands, I am not one of them.
I tried. I left as soon as I could, and I only came back under duress. Walking the familiar roads and fields is as much pain as homecoming. Every step holds memories I have worked hard to erase, as well as memories I cherish. And yet as I stand here in this darkened stadium, singing along with a thousand people, staring down at the lit representation of a past that never was, breathing in the heady fumes of beer and popcorn, I am again a little girl, a teenager, a fledgling woman, and the night again holds the magic of endless possibilities.

A whiff of charbroiled hamburger from the Charburger Drive-In across the street tickles my nose, and for a moment I am jammed into one of its battered booths with my sisters and as many of their friends as my Grandpa could shoehorn into his car. Each of us has a charburger, a shake, and fries and dipping sauce on  the table in front of us. And as the crowd we are talks, laughs, and teases, Grandpa looks at us all and smiles. When his gaze falls on me he leans over the table and flicks my french fry box with one gnarled brown finger. “You eat these, doncha, Bodie?” he asks. And I smile and nod and eat a fry to please him, even though the Charburger’s fries aren’t all that great unless you eat them really, really fast, before they cool.

Back in the stands, Alex leans against me and lays his head on my shoulder. I lift him and settle him on my lap, falling into the slow, easy sway that is the mark of mothers in my world. I lean my cheek on Alex’s curly hair and sing softly about Betsy from Pike. But I am not really thinking about the songs anymore.

The falling of the towers has reminded us all that America’s freedoms, privileges, and resources are not givens. We are not sure how to best preserve them, and the debate is growing increasingly bitter, but we are all agreed that we have taken our gifts for granted for far too long.

“Look, Mommy, they came back,” Alex says happily, lifting his head from my shoulder. He’s right. The Indians have come back. Along with the rest of the cast, they fill the painted mountains and forests, surround the man on the pinto pony, the flag, and the sunburned local boys. They spill over into the sawdust, buckskins mingling with calico mingling with cavalry blue with sequined velvet and feathers. Alex heaves a happy sigh, lays his head back on my shoulder, and is instantly asleep.

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I drive back to my mother’s house through streets full of what we scornfully called “drugstore cowboys”—all hat and no saddle was how we described them. There is dancing on Main Street. The carnival is in town, as it is every year, and as I ease my car through the crowds on Main Street the lights of the Ferris wheel circle overhead. The warm fragrance of corn dogs and cotton candy fills the car. I speed up as I head out of town then slow down again and creep carefully up the steep, rutted track that leads to my mother’s house high on a hill overlooking the Umatilla River Valley.

As I round the last corner I see that she has left the porch lights on for me. For just a moment my stomach twists in the old, familiar cocktail of fear, love, pain, and aching sweetness that I felt each year at the end of summer. And at last I understand what it is. It is the pull of the land. I was born less than sixty miles from this spot. I grew up here. I ate foods grown in this soil. I gave the land my sweat and my labor. In turn, the land gave me what I needed to survive—food for my body, and food for my soul.

It gave me cool mornings scented with wet grass and alfalfa. It gave me ripened wheat fields under scalding sun. It gave me desert hills split by long, straight roads shimmering in the summer sun. It gave me cornfields rustling in the night. It gave me the howls of coyotes, the clatter of balers, the whistle of the wind, and the cries of killdeer, meadowlarks, and mourning doves. It aged me. It renewed me. And sometimes in the evening when the sky turned to pearl, silver, and cobalt and the chill wind cut through my T-shirt and bib overalls, I hardly knew where I ended and the world began. This land was my land.

And I walked away—ran away, actually, driven by demons I didn’t understand and couldn’t have faced if I had. I ran away, but now I’m back, and as I pull into my mother’s driveway I understand the truth—I might have belonged here once, but I left, and the world from which I fled went on without me. Tonight has been a taste, just a taste, of one of the best parts of the life I left. And now I must walk into the house, and face down the fears that drove me away in the first place. I carry Alex inside, slip him into his pajamas while he sleeps, and pull on my nightgown. The fresh smell of soap and sunshine surrounds me, and I realize my mother has been busy while I have been gone. I lie down beside Alex and pull the fresh sheets over us.

I close my eyes and think about Happy Canyon. I remember the drums, the chants, the measured, dignified dances, the wagon train’s fiddle music and square dances, the can-can girls, and I realize that in spite of past injustices and wrongs, in spite of culture clashes, we who belong to this land—even those of us who have left, and are just beginning to find our way back—have something in common. We have our songs. There are the songs that divide us—and sometimes set our teeth on edge—and the songs we sing together. We would be the poorer for losing either.

I think again about all of us in the stands, singing together. I marvel that so many of us can remember the words, and I wonder. In twenty years, will Alex bring his children to Happy Canyon? Will the stands be full of people who remember to stand, and who still know the words of the songs that bound us tonight, as well as the songs that divided us? Will Alex know our songs? Will I remember them? Will I have made this land Alex’s land? Will I have earned my right to again call it my own?

The next morning Alex and I start the long trip back to our apartment in Gresham. On the way out of town I stop at the music store and buy a song book.

 A note about the illustrations: These are based on some art I developed for a traveling exhibit of the Applegate Trail a number of years ago. The Southern Oregon Historical graciously agreed that I might use them, provided I mention their name. So I did. Thanks, Southern Oregon Historical Society–I wish I lived close enough to still do stuff for you. I think of you often and kindly.

Zimmy


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Available now for pre-order; release July 4, 2016.

Probably more than any book I’ve ever written, this was a labor of love. William J. Zimmerman–Zimmy to his friends; Bill to my Grandma; Grandpa to his grandchildren and great-grandchildren–was an utterly amazing man not because of the things he did, but because of who he was. One of the things he was was a great storyteller. He wasn’t a great one for making things up; his stories were slices of his life, and he dished them up to whoever wanted to hear them.

Some of his stories became the stuff of family legend–his “Frog in the Water Bucket” story is still told when we gather. Some of his stories were less straightforward–they captured complex events, things that didn’t lend themselves to simple analysis.

For me, his stories evoke not just slices of his life, but slices of mine–evenings in the garden, Grandpa’s hands slowly, carefully, tending plants, his voice soft, slow and rusty, the wind blowing cool after the heat of the day. They evoke moments stolen, out of time. Mostly, they evoke the safe place my Grandpa was–a man who considered every one of his grandchildren unique, irreplaceable, and remarkable. These stories remind me of a time and a person who believed I could do anything, and be anything I wanted. He had no doubt of my success.

There are too few men like my Grandpa in the world. As I grow older, I find myself talking about him to my son. I find myself not only telling his stories, but going back to them as touchstones for how I might pass on some of what he gave not only me, but every one of his grandchildren. These stories are important not just because they capture events in a life that spanned most of the twentieth century from wagons to airliners, but because they document how an amazing man navigated a life that all too often threatened to get the better of him. Grandpa was more than just a survivor–he was a storyteller, and his stories hold the key to how he did it.

In an uncertain world, Grandpa’s stories have fresh relevance not just because I loved him and loved his stories, but because they function in many ways as myth–in telling them, Grandpa offered a way to not just navigate hard times, but to do so with courage, persistence, and humor.

I started this book for my son. I turned out to be a gift I gave myself–a long, deep, satisfying conversation with a man who could be trusted with not just my life, but my heart. A grandpa like mine is worth sharing.

A quick note to the others who called him “Grandpa,” and may stumble across this. Most if not all of these stories will be familiar to you. You may remember them somewhat differently. If so, I hope you write down your versions, and share them with me. This book is a starting point.

The Perfect Parents


This last week we’ve seen two examples of parents facing something that no good parent can even dream of facing. I read about the child falling into the gorilla enclosure, and the toddler being taken by the alligator, and something in me recoils. I’m a fixer–“plan for the ‘what-if’s,” I’ve taught my son. I believe that. I believe in being careful, in planning ahead, and yes, even in padding the corners of the world for our children, at least until they’re steady on their feet and have a decent sense of self-preservation. I believe in that so deeply that many considered me over-careful–and yet never for one second have I regretted the pains I took. Even with all that, though, accidents happened. I felt awful, and worked all the harder to prevent the next one–and that there would be a next one I had little doubt.

The thing about accidents is that they come at us from random directions. By their very nature, they are accidental–things that happen that we never dreamed might. I believe in being careful. I also understand that accidents happen to even the best of us. And that’s why what I’ve seen unfolding in the comments sections of the stories covering these two tragedies has sickened me. Here are these parents who have just experienced something for which even I, with my passion for fixing things, can’t find a next step. What would I have done if my child had slipped away for a moment–only a moment–and devastation occurred? I don’t know. I can’t even imagine my next step. When I contemplate losing my child I realize that when his life stops, mine does, too. There is no next meal, next act, next step. There is only life with him in it, and then nothing.

Two sets of parents are struggling to find their way through something so terrifying in one case, awful in the other, that my mind shuts down at the very idea–and yet what I see in the comments section is all too often not supportive, empathetic comments, or even comments seeking to understand how such events might serve as teachable moments for the rest of us–hold on tighter, stay out of all water except in swimming pools while in alligator habitat–but blaming and shaming.

Why would we do this? Why would we figuratively “hit these parents while they’re down?” I think that some of the virulence can be attributed to  the form of religion many of the “perfect parents” who seem to be most vocal practice.

While there are many wonderful Christians, it’s hard to deny that Christianity has an ugly secret at its heart–it’s a religion custom-made for those who can’t stand the vagaries of life. It offers something it can’t deliver–the guarantee that God will watch over those whose worship habits are up to snuff, that good people will be rewarded with blessings, that tithe-payers will be rewarded with the treasures of heaven to such a degree their bank accounts can’t hold it all. This promise is called the “Wisdom Theory,”because it’s a formula found all through the Psalms and the “Wisdom” books–“the fear of the Lord is the beginning of wisdom,” for example. That Bible writers expected this to be the case is abundantly clear–story after story recounts instances of good people being rewarded and bad people punished. David often expresses anguish at the fact that even though he is a “righteous” man, his life all too often is in danger. “Why do the evil prosper?” he asks. Why indeed. And yet the Wisdom Theory still shapes the beliefs of millions. It’s often brought out at times like this to “explain” that the fact that this awful thing happened is “proof” that the parents failed God in some way.

The Wisdom Theory promises something it has never delivered–assurance that we can, by our own actions, keep ourselves and those we love safe. You hear it all the time: She was raped because she dressed provocatively, or she was in the wrong place at the wrong time; his kids went to jail because he left his wife; single mothers bring their hardships on themselves; poor people lost their homes in the financial crash because they lived beyond their means; the abused wife suffers because she has pushed her husband too far, spoken out of turn, burned the dinner. For those who believe in the Wisdom Theory, there can be no accidents. Every awful experience is earned by some failure in those going through it. They deserved it. Such a thing could never happen to us. We’re good people.

Alternatively, the “comforters” will assure each other (and the parents) that this devastation must be some part of God’s plan–that their child might have turned out to be a monster, so “God took him early.” The Wisdom Theory provides an illusion of control, the false assurance that we actually have control over not just our own behavior but the behavior of every one and every thing around us–that if we just love God well enough, and follow the rules slavishly enough, we can be guaranteed protection against all misfortune.

The thing that makes it so seductive is that to some degree we do shape our fates. We do need to be responsible for our own safety. But no matter how responsible we may be, we are all at the mercy of forces much greater than ourselves. None of us are all-knowing or all-seeing. Accidents happen. Accidents happen because we don’t have total control. They happen because we live in a world of intersecting chains of causes and effects, and sometimes those intersections can be dangerous, terrifying, and terrible places.

Here is the truth. The Wisdom Theory isn’t about life. It’s about power–about using emotional blackmail to coerce people into sometimes self-destructive or other-destructive behavior. It’s about coercing poor people to give money to religious institutions bloated with wealth–institutions who give lip service to “helping the poor” even while they exploit them. It’s about keeping slaves, wives, children, and the poor in their places, supporting the status quo, following the rules, not rocking the boat. The Wisdom Theory keeps the king safe on his throne, and the beggar on the street starving.

It’s time we relegated the Wisdom Theory to the dustbin of history, where it belongs, and follow instead another teaching found in Christianity–“Bear one another’s burdens.” It’s time to recognize that no matter our best efforts, we are all subject to the whims of fortune far more often that we would like to be. It means that rather than seeking to ferret out the grievous sin that made the loss of a child a suitable punishment, and then adding our own punishment to that, we instead recognize our common humanity, accept that those of us who have not faced such a loss are perhaps not so much better parents as just luckier, and then doing whatever we can to not ease the pain we see–perhaps no one can do that–but to not make it worse: to sit with the sufferers, hold them up, bring them food, love them and their children, do their laundry, vacuum and dust their houses, and perhaps, just perhaps, help them survive long enough to find their own way out of a very dark place.

No, No, No Hillary…


It’s taken me a long time to reach this point, and even longer before I was brave enough to say it out loud, but I will not be casting my vote for Hillary Clinton this election, even if she does become the party’s candidate. She is not my candidate. I find her views on war frightening and her allegiance to Israel’s right to bomb indiscriminately nauseating. Her financial plan offers more of the same old same old that got us here in the first place. I find her feminism unconvincing in light of the additional pain and suffering she has caused millions through her misguided support of “welfare reform,” and her willingness to “destroy” (again, her word) the women who called Bill Clinton on his sexual misdeeds. Finally I find her wooing of and pandering to the financial industry while offering full-throated support to regulation cynical and dishonest, to say the least. I find the financial industry’s allegiance to her even more worrying–they don’t support candidates unless they see a clear benefit for themselves in the relationship.

Most of all, I find her willingness to sacrifice ethics, morals, and values to political expediency absolutely terrifying. I’ve seen her run in two presidential elections now. Both times, she used tactics I found beneath contempt. Watching her misrepresent, distort, and lie about her record and Senator Sanders’ record has been a bad trip down memory lane.
It’s also been a timely reminder. I had forgotten much of what troubled me about her previous campaign. I had let the distasteful mess of the Lewinsky years slip from my mind. But she has encouraged us to recall those years, I presume because she thinks they’ll offer her credibility. Well, I have recalled those years now, and that gives me a timeline–I’ve seen her in action now for twenty years. When I look at her record over the long haul I am struck first by how very, very committed she has been to the pursuit of political power. She has been willing to sacrifice things that I think no one should sacrifice in pursuit of maintaining that power. Second I am struck by a pattern I see–she waffles and dodges and then, when an idea’s popularity becomes inevitable, she comes out in full-throated support–and claims she’s been there all along.
I know others see her differently–others are less bothered by what I see as her lapses–possibly legal lapses, although she most typically seems to achieve her ends by creatively stretching the law into shapes it was never intended to take–but even more by her ethical, moral, and judgment lapses. Why make up a story about running under fire when you know the landing was televised? Why take obscenely large payment for speeches to the financial sector when you must know you’re considering a presidential run (does anybody seriously think she wasn’t planning on running for this election from the day she conceded in 2008)? Why vote for a war that you have every reason to know is unjustified (others certainly knew–why did Hillary, that great international expert, not know)? Why create at least the strong appearance of impropriety by rewarding Clinton Foundation donors with State Department support and favors?
Even if we put the best possible construction on each of these issues, we have a choice between a Hillary who is criminally corrupt or a Hillary who is weak, venal, and terribly, terribly short-sighted, and certainly as poorly advised as ever Ethred the Unready was (look him up–it’s a funny story; I promise you).
I have a lot of reasons to not vote for Hillary. But why Bernie? I’m voting for him for three reasons:
1. First, because when I look at his record over the last thirty years, I see something very different from Hillary’s record: I see a principled man who has consistently fought for a set of core issues–the same core issues that have formed the basis of his campaign. Is he perfect? No. I differ with him on gun control, to mention just one thing. But here’s the thing: I know where he stands. He stands precisely where he has always stood–for social and economic justice for those of us who cannot afford to pay $225,000 for a house, let alone a speech. He fought for his ideals when they were unpopular. But now those ideals’ time has come–and Hillary, in true Hillary fashion, has suddenly discovered that she supported them all along. ($15 minimum wage, anyone?)
2. I am voting for Bernie Sanders  I’ve seen the way the two candidates have conducted themselves under the pressure of the campaign–in interviews, on the debate stage, and in rallies. And I find Sanders’ conduct infinitely more palatable.
3. Most important, I am voting for Bernie Sanders because Hillary Clinton’s message throughout the campaign has been,”Dreams are for suckers. Accept the status quo. You’ll never change anything. You might as well not try.”
I don’t accept that. I don’t accept that because for me, it’s just not true. My life has broken more often than anybody’s life should. Each time it broke I faced a decision: I could just try to get back to “normal”–to re-establish the status quo–or I could take a deep breath, look around, and use my broken life as an opportunity to ask myself, “What is it I really want to be? What do I really want to do with my future?” And then, somehow–maybe because things were so broken there really was nowhere to go but up–I took the leap into the unknown. I dreamed big. I took hold of those dreams and let them pull me to a better place.
Was that new place perfect? No. But that new place was built on dreams, not fear. And when the new place breaks–and it does–I know that I can dream big again.
I am not voting for Hillary because her pitch asks me to pipe down, get in line, accept the corruption in our political system, stop trying to be my best self. She’s asking me to kill a little bit of my soul. I am voting for Bernie for the same reason I voted for Barack Obama–because he’s challenging me to grow, to dream, to believe that though we are no great shakes as a nation right now, we can be better, if we work at it. Dreams don’t come easy. We’ve seen that.
Quite likely Bernie Sanders will lose the primary. I could argue about the shenanigans we’ve seen, but others could very rightly say that our politics have always had shenanigans. They would be right. But here’s the thing: Just because something’s always been there doesn’t make it right. And now that I have the opportunity to actually vote for a candidate with integrity, why on earth would I throw that opportunity away on “business as usual?”

About That Danged Button


So I came out of surgery probably like everybody else, gasping and flailing like I was drowning (a fact that mortifies me now–I would prefer to think I had awakened slowly and gracefully, my long, silken lashes sweeping up to reveal my violet blue–no, golden brown–no emerald green–oh, forget it. Instead I awoke flailing, with an IV sticking in my arm, a PICC line in my neck (“You have crappy veins–they’re all scarred up,” the nurse informed me), a tube down my throat, and a catheter up the old hoo ha.

My flailing was swiftly curtailed when a blast of fire ripped across my belly. I stopped moving and lay very, very still. And then I was out again. Repeat about a bazillion times as I waited in the recovery room for an ICU room to open up. Flash forward what the nurse said was seven hours, but you couldn’t have proved it by me.

“You ready to go?” the nurse asked, far more cheerfully than I felt was warranted. “They’ve got your room ready for you.” She hooked my IV and catheter on the bed (liquid in one end, liquid out the other–I hoped she didn’t get them mixed up), and so began my slow and stately procession down the hall, into an elevator, and down another hall. I assume I must have gotten into the ICU bed at some point, since that’s where I was the next time I woke up, but I don’t recall that part of things.

“You awake?” the ICU nurse asked.

“I think I’m going to throw up,” I said.

“We’ll get you a patch,” she said. “See this button? It’s right here. When you start hurting, just push the button. Give it a try.”

I pushed the button. Grogginess and nausea swept over me in equal amounts. “I really think I’m going to throw up now,” I said.

“We’ll get you something,” said the nurse. “Now just remember to push the button when you start to feel pain.”

But I was asleep again. I awoke to pain. I fumbled around and pushed the button. The nausea grew worse. I hadn’t thought that was possible. I went back to the “lying very, very still” technique I had developed in the recovery room. After a while I shifted slowly and carefully–and felt that damned button, under my shoulder blade. “Click” it went, and nausea flooded me again.

And that was my night. Every time I moved, the button was waiting, lurking in the shadows like a heel-biting dog, darting under my shoulder, behind my arm, under my hip. “Click. Click. Click.” And the flood of nausea. By morning I had gathered enough of my wits to take that blasted button and drop it over the side of the bed. When the nurse came in she said, “Oh, you’ve lost your button,” and carefully put it back in the bed, right beside me. “There, can you reach it?” she asked kindly. And she moved the button a little closer to my hand.

“Can we not do the button?” I asked, swallowing bile.

She looked worried. “We’ll have to go to pills to control the pain,” she said doubtfully.

“Fine,” I said, relieved.

She got me a pill. I took it. The nausea was there, but much less intense.

The next time I started hurting I said, “Can I take anything else? Something that won’t nauseate me?”

“We can try Tylenol,” my nurse said, but I could tell she didn’t suggest it.

But we tried it, anyway. And it worked.

Here’s the thing about pain: It’s important to control it not only for patient comfort, but so the patient can heal. Hurting people don’t do as well as people who aren’t hurting. That’s the thinking behind those buttons: They allow patients to regulate their medication, to keep them as comfortable as possible. And for most people, they work just fine. In my particular case, though, less was more when it came to pain medication. I took the heavy stuff about one dose in three; the other doses I took Tylenol. And I stayed comfortable. I had what I needed. My caregivers worked with me to figure out how to keep me comfortable without feeling like I was going to toss my cookies.

The downside for them was that I was alert enough to make their lives a living hell asking for drinks, and then help to the bathroom, in return for which they made me walk laps in the hallway, which in turn got me out of the hospital and their hair faster, but I was eager to go, too. Win/win.

Going to the hospital and undergoing surgery is an enormous act of trust. We who do that literally close our eyes and fall backwards, trusting that the surgeons, anesthesiologists, nurses, and doctors will hold us and keep us safe until we can keep ourselves safe again. They perform the most intimate of tasks, and if they are anything like my nurses they do it matter-of-factly, with no drama. I even learned not to apologize for needing their help.

Recovering from surgery reminds us that there are times when all of us need to rely on others. I was so very fortunate that when I had to close my eyes and trust, I was surrounded by people who kept me safe until I opened my eyes again. And by people who were willing to take away the button that made their lives easier, and substitute pills, which made me more comfortable.

In the end, my experience at Seattle Cancer Care Alliance and the University of Washington Medical Center felt more like I was a partner in my healthcare, rather than a patient, being “treated.” It became a conversation among all of us–my caregivers, my head–and my body. We all listened to my body. And it was good.

Sitting In


PrintWay back, oh, several years ago, I edited a book for Dr. Joseph Pinzone. The book’s title was Fireballs in my Eucharist: Fight Cancer Smarter, and it felt a bit personal. Most of the time working on somebody else’s book is delightful because I am exploring strange and virgin territory; in this case, though, Dr. Pinzone was providing a roadmap for a route I’d already traveled–the journey through a cancer diagnosis, written by a doctor who had known how to listen as well as talk to his patients. In my case, the diagnosis was my dad’s, and editing the book brought back a lot of memories. And then it went to press, and I forgot. Or almost.

When my doctor called with my initial diagnosis I remembered exactly one thing from Dr. P’s very excellent book: He advised designating someone to go with you to appointments, to take notes and serve as a second set of eyes and ears. My first decision was to ask my sister Sandy to help me with the medical stuff. This is because she’s worked in medical and research communications for years. She knows the lingo. She knows the systems. And she knows me well enough to know how those things apply to me, my diagnosis, and my life. I did a smart thing in asking her. Kudos to me.

What I hadn’t considered was that my surgeon and the head of my treatment team, Dr. Gray, would also find it helpful to bring others to our meetings. I hadn’t expected my treatment to be such a team effort. Before I arrived I had thought it would be Marilyn, Dr. Gray, Sandy, and me. And then I got there.

Here’s a little tidbit for those of you who are unfamiliar with gynecologic oncology: It’s a messy, messy discipline. In the years leading up to the last few months I had given up on the impossible goal of feeling clean, and settled for just not having blood visible on my clothing. I had grown used to slamming awake at night knowing that if I didn’t get out of bed and to the bathroom immediately I would be leaving a trail of blood in addition to having to change my sheets and pajamas. I had completely given up on scheduling pap smears because the bleeding never stopped, and the doctors I tentatively asked about it indicated that doing an accurate examination  around heavy bleeding wasn’t the textbook way to do it. I packed my purse with pads and extra underwear, got used to wearing four pads at a time and never getting too far from a bathroom. I gave up ever wearing light colors. I chose patterns that included splotches of red. I learned to sit on hard plastic chairs in public–never, ever, anything upholstered. And because this all crept up on me, I didn’t think too much about it. It was just the way my life was.

So then I got to SCCA for my pre-surgery appointment. The office nurse who went over my preliminary history with me had clearly read my records, but then she did something a little bit different. Instead of just reciting the facts, she told me my story–I think she called it a “narrative,” but I write stories, so I knew it for what it was. This was the story of me, and my lady parts, and how we had gotten from what amounted to an armed truce to open warfare.

In order to tell that story, she had to not only have my records at her fingertips–she had to know them. She had to understand the cause and effect relationships. And when she finished, I knew that I was more than just a collection of medical data–all those details could be arranged and understood in terms of story. It was a little flattering. This bright, intelligent person had made a story about me!

And then the hammer dropped. “Dr. Gray will be in to do an examination,” the nurse said. “Please take off your clothes and put this robe on.”

And there it was–the old problem. Because of course I was bleeding again. A lot. My doctor at home had put in an IUD a month before to try to stem the tide, and in the beginning it sort of had. But the week before my trip to Seattle my body had managed to override the IUD and we were back to business as usual. And now I was supposed to take off my clothes and bleed all over this beautiful office in front of beautiful, poised, professional Dr. Gray. I felt like a slug.

“Can we put something on the bench?” I asked shyly. “I’m bleeding.”

“It’ll be okay,” said the nurse.

“But I’m bleeding,” I said again.

“Honey, welcome to the world of ob/gyn,” she said kindly. She wasn’t going to cut me any slack. Bleeding or not, I was going to get examined.

I took off everything except for my underwear. Dr. Gray and her nurse came in, and I carefully, reluctantly, peeled away my last defense, hoping against hope that I wouldn’t get blood on the floor, and if there was blood, at least no massive clots.

It was not to be. By the time I had assumed the position I could feel the hot blood and gelatinous clots slipping free. “I’m so sorry,” I said, mortified.

“I can’t find the IUD string,” said Dr. Gray. She tried again. The IUD was nowhere to be found. “Maybe your body expelled it,” she said at last. “That would explain the bleeding. If it’s in there, I can’t find it.”

“I’m sorry,” I said again.

“It’s okay,” Dr. Gray said. “This is what we do here.”

Exam over, she pulled off her gloves and left me to get dressed again. The base of the examination table was smeared with blood, and clots lay on the floor. But by then it was too late to feel humiliated–Dr. Gray and her nurse had been right there in the thick of things, and they had both said that this was their world. I took a little comfort in that as I did my best to wipe up the worst of the mess.

And then we met for the post-exam, pre-surgical consult. As I said, I had known that Sandy, Dr. Gray, and I would be there. What I hadn’t expected was two of Dr. Gray’s nurses to be there, too. We sat around a table in a quiet, cozy little room, and Dr. Gray told me what she had found.

She explained that my diagnosis wasn’t quite as clear-cut as it had seemed back home, that there seemed to be a mixture of cancer types, and that there was some indication that things weren’t as advanced as they had at first appeared. She drew a picture of my lady parts (for a mad moment I thought of offering to do the honors, since I’d been making uterus pictures for the last month, but I managed to bite back the impulse).

And then she stopped, and one of her nurses took over, asking questions filling out forms, discussing nursing-related things in soft, gentle tones. I felt myself ease a bit.

Dr. Gray took over again. She explained the surgical procedure. She laid out risks and rewards. Sandy took careful notes. I heard her pencil scratching across her pad behind me and felt comforted–I could just listen and try to understand. Sandy would remember for later.

And so it went, each of the professionals on the SCCA team taking it in turns, managing the flow of information so I could absorb it, stopping to answer my questions. At the end of the meeting Dr. Gray and her nurses gathered up all of the papers, put them into a large manila envelope, and gave them to me to pass on at my appointment with the anesthesiologist. Thanks to Marilyn, I knew where and when that would be. I was ready.

I don’t often think of meetings being “scripted,” and even seldomer do I consider that a good thing. I don’t know if Dr. Gray and her associates had actually sat down and planned that meeting out, but I can say that as Sandy and I walked through the lobby on our way to the elevator I said, “Damn, that was well-scripted.” And it was.

Sh*t Got Real…


july22_blogphotoIt’s been a few weeks since I’ve posted. I’m sure those who are not my facebook friends were waiting with bated (I’m always tempted to write this “baited”) breath to learn if I survived (spoiler alert: I did).

I survived the trip to Seattle. I survived the pre-surgery consult. I survived the surgery, once the doctor realized that my lungs don’t LIKE IT WHEN I’M STANDING ON MY HEAD (more of this later). I survived that damned easy-access pain medication button, once I banished it from my bed (more of this later, too). I survived the trip home. I survived a couple weeks of healing. And now I’m surviving an infection that makes me look like a kangaroo.

My survival is something of a delightful surprise to me–like many people who find themselves flirting with the Big C, once I Left the Happy Land of Denial(this happened two days before I had to go to Seattle for surgery) I found myself confronting my mortality in all sorts of unexpected ways.

Because I’m a mom, my first worry was for how my son was going to survive without me. At times like this I tend to obsess. I know this because it first happened when I was pregnant. The pregnancy was unplanned and I was doing it solo, and let’s face it, at the time I was far from a sterling example of mental and emotional health. The doctor had yanked my anti-depressants as soon as the test came back positive (I was already three months pregnant–my recent trip to the Happy Land of Denial was not my first visit). I was dealing with the fallout from the vicious gossip being spread by one of my Nearest and Dearest–gossip specially crafted to undermine any emotional support others might want to provide. My relationship with my son’s dad had ended six weeks before I realized I was pregnant. Things were stressful at work. My counselor had about given up on me.

Looking back, there was too much–too much uncertainty, too much guilt, too  much shame, too much failure, too much loss. “Pick one thing,” some secret part of me advised, “and focus on that.” And so I did. In the midst of all the uncertainty and the variables (Where would he go for day care? How would I earn enough to keep us? How would I manage to keep him fed? What if I dropped him? What if I turned into the thing I most feared–an abusive mother?) Somehow my brain screened out all those very real concerns and gave me one manageable worry: How would I keep my baby warm?

I dug out my fabric reserves and visited the fabric stores. And then I started making baby blankets. I made quilts, mostly–lovely pieced quilts, full of fluffy batting. And then I bought my baby clothes–in sets. I bought onesies and sleepers, mostly, and receiving blankets that coordinated with everything, because I was planning not for a baby who was going to be making a public splash, but for a baby who was going to live his life in soft jammies, cocooned in color-coordinated quilts. I might not have formula. I might not have diapers. I might not have a car seat. I might have no idea about daycare, or juggling a baby and a career. But my baby’s clothes were going to match ALL of his blankets, and he was going to be by all gods warm. When he finally arrived I had a stack of baby quilts two feet high in the corner of my bedroom.

I realized how scared I was at the idea of cancer, and Seattle, and surgery, when I found myself blithely glossing over things like tests, my will, my advance directive, getting my records from my doctor here at home to the surgeon at Seattle Cancer Care Alliance, arranging the trip to Seattle, and tracking down the hotel once I got there in favor of one simple, manageable worry: Would The Boy have enough to eat?

I filled the freezer with healthy frozen meals. I bought bread and sandwich fixings. I bought breakfast stuff. I arranged with friends to play backup, should the freezer fail him. And every time we drove past Safeway, I found myself asking, “Is there anything we need to buy for the freezer? What are we missing?”

To which The Boy replied, “Mom, we can’t get anything else into the freezer. It’s full. I’ll be fine.”

And I knew he would be–if I could just remember that one magic thing, that one missing ingredient, that would spell the difference for his survival. Leaving someone you love, no matter how capable they may be of managing their lives, is hard, and it’s scary, particularly when you have no assurance of the outcome.

It was winter, and we were going to be driving through the mountains. What if we had a wreck? What if the passes closed and I was trapped in Seattle? What if once I got there everything fell apart, and I had to come home and start over, and all the while the cancer grew and grew? What if my sister–who was meeting me in Seattle so she could go with my to my appointments and see me through surgery–and I had a huge fight? I pictured us trapped in the hotel room, prisoners of the love we bear for each other, wounded by our sometimes-prickly personalities. What if I just plain got lost?

I pictured The Boy marooned at home, the freezer empty, the house freezing because the power bill hadn’t been paid (I’d paid a month ahead, but who knew how long I might be stuck in Seattle?) withering away, lonely, starving. And cold. Very, very, cold.

I think the hardest thing I had to do was drive him to school the morning before I left, say goodbye cheerfully–and then not stop by the school on the way out of town for one last look at the person who has made my life worthwhile. For his sake, I pretended that all those fears hadn’t even crossed my mind. I pretended that I was positive I’d get to Seattle, everything would go well, and I’d be home by the weekend. I pretended–but I left town fearing that I’d never see him again.

Lest you think harshly of me, let me explain. Seattle Cancer Care Alliance was not my first choice. My doctor recommended that I go to Oregon Health Sciences University, and since I feel my doctor generally has my best interests at heart I took her advice, way back when I first got the diagnosis. I went home and called OHSU’s Gynecological Cancer Intake number.

“What’s your diagnosis?” the woman on the phone asked.

“Serous Carcinoma,” I said.

“End-o-me-tri-al Can-cer,” she said to herself, presumably as she wrote.

“No,” I said, alarmed. “My doctor says it’s serous carcinoma.” Like about everybody in my position, I had immediately googled the term and learned that serous carcinoma sometimes appears in the uterus, but that it’s a different animal than the more common endometrial cancer.

“It’s easier to spell,” the woman said.

I have to admit that rocked me back on my heels a bit–was OHSU keeping patient records, prescribing medicine, and operating patients based on what they found easy to spell? I hoped not.

“You’ll have to get me your records,” the woman said. And she gave me a fax number.

I called my doctor’s office and arranged for the records to be sent.

The next day I called to check. This time I got a man on the line. “No, we don’t have your records,” he said. “What’s your diagnosis?”

And so we went through it all again. I got another fax number. “Do you think it might be possible to arrange my pre-surgical consult and my surgery within a few days of each other?” I asked. “I’ll be driving for several hours to get there, and hotel costs for an extended stay will be hard.”

“Do you have any idea how big an organization we are?” he inquired. “We can’t make special accommodations like that. We can’t schedule the surgery until you’ve had the consult.”

“Even though I’ve had a D&C and a CAT scan, and have a diagnosis?”

“We can’t schedule the surgery before you’ve had the consult,” he said implacably.

“Would it be possible to talk to the doctor, or her nurse? Maybe if she understands the situation we can figure something out.”

“No,” he said, and then did a quick reprise of  “Do-you-have-any-idea-how-big-an-organization-we are?”

I called the next day to inquire about my records, and got a third person, who had also not seen my records. She gave me a third fax number and assured me it was right next to her desk. I hoped so. I asked to speak to someone in billing, so I could be sure my health insurance was acceptable.

“We don’t do anything like that until we schedule the surgery,” the lady told me.

About then I started seriously wondering how this was going to work. They wouldn’t schedule the pre-surgical appointment until they had my records, which were apparently going to a fax somewhere in a yurt in Outer Mongolia. They couldn’t tell me if my health insurance was valid until the surgery was scheduled. They couldn’t schedule my surgery until I’d had the pre-surgery appointment. And all the while the cancer was growing.

And that was when my sister Sandy got serious about figuring out a way I could go to SCCA. I’d found it online. Its outcomes were good. It was ranked fifth in the nation. It turned out that Sandy had a former colleague and friend who had worked at the Hutch. She offered to show me around. Other staff members did the same. Before I ever called, I felt like they knew me there. I felt like I mattered to them.

Still, though, it was not without trepidation that I called the SCCA gynecologic oncology intake line. My experience with OHSU had made me wary.

“Hello, this is Marilyn,” said a lovely lady. “How can I help you?”

I told her my diagnosis, and asked if it might be possible to be accepted for treatment at SCCA.

“We’ll need to see your records,” she said, and my heart sank. “If you’ll give me your doctor’s phone number, I’ll arrange it,” she finished.

And that right there was the beginning of a beautiful friendship, because Marilyn became my friend–my smart, plugged-in friend at SCCA, the person I asked about everything–and she’d answer my questions, explain why the answer couldn’t yet be determined, and sometimes tell me who could give me the answers I needed. Marilyn was there for me. When I called, I talked to her. She knew my case. She knew my concerns. She got my damned records the first time. She told me who my doctor would be. She explained the relationship between the Fred Hutchinson Cancer Research Center, Seattle Cancer Care Alliance, and the University of Washington Medical Center (it’s a little bit complicated, but the benefits make it worthwhile). She sent me information on places to stay. She helped me work out a pre-surgical consult and a surgery date that were within a couple days of each other. I relied on Marilyn. I loved Marilyn. I still do. I’d have a baby for her, if that ship hadn’t sailed.

Leaving my son home alone while I went far away to a city I didn’t know for a surgery that either would or would not turn out well was hard. Marilyn made it easier. My good friends the Mulders, who drove me up and then waited to drive me home afterward made it easier. My friends Megan, and Marty and Morris, and Leatrice and Mike, and Amber, and Terrie, and Sylvia, all made it easier. My son’s professors made it easier. My sister Sandy made it easier. When I got home, my mom came and stayed and made it easier. Cancer is hard. Dealing with it requires finding a provider who offers the best science, and the best outcomes. But I was lucky. In the midst of the hard stuff, I found a whole world of people willing to carry a bit of the load.

And that’s important, because there’s more to cancer than a tumor. There’s also an intensely human side to the equation. I was a mom, worried about my kid. I was a sister. I was a professional woman worried about my clients. I had a long drive and not a lot of money. OHSU has excellent science. But based on my experience, they have forgotten they deal with people.

“Do you have any idea how big we are?” the man asked. Clearly they were too big to do something as simple as assign a single intake person to minimize confusion. They were too big to understand that some of us deal with tight budgets, and the uncertainty of a long hotel stay or multiple five-hour-one-way drives can become insurmountable obstacles at a time when we just can’t afford them. They were too big to keep track of my damned medical records. They were too big to write down my diagnosis using the most specific term, simply because the more generic term was “easier to spell.” I hung up thinking that perhaps OHSU was just too damned big, if it had come to see its patients as something other than human beings.

And that was why I found the sheer size of the Seattle Cancer Care Alliance startling, once I arrived for my pre-surgery consult. As my sister and I sat in the lobby waiting for my appointment I leaned over and whispered, “It’s a lot bigger than I thought it would be.”

My sister, who has a long and illustrious history doing media relations and communications for world-class medical centers, looked startled. “What were you expecting?” she asked.

“Oh, maybe a couple of rooms,” I said. “We’d come in and check in at a counter, and Marilyn would be in the back, and there’d be maybe a doctor’s office or two…”

Sandy snorted, but quietly–the SCCA lobby was quiet and serene; it didn’t encourage excessive personal expression in the way of snorts.

I never got to meet Marilyn while I was there–her job was to smooth the way, to guide me gently through the hard, complicated, terrifying business of preparing to deal with my cancer. Once I arrived at SCCA I became other people’s responsibility. But Marilyn was my first, and best, friend there, and much as I love her, I hope we never have to speak professionally again. Good luck, Marilyn, wherever you are.

 

 

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