Fish and Fowl

In search of a new identity.

Abo, Salinas Pueblo Missions National Monument

Fourteen fragments of truth—puzzle pieces, potsherds:

1. Northwest from Albuquerque, beyond the box stores of exurbia, up through scrub desert where piñon and juniper grow, past sandstone mesas, Dust Bowl ruins and faded Trading Post signs, amid mile after mile of sagebrush, is the corner of the Navajo nation where New Mexico, Arizona, Utah, and Colorado meet. Their borders touch at 90° angles—square dancers reaching a hand into the center of the dance.

If you’re not from one of the four states, you might not notice much difference between them; sagebrush all looks alike. You might regard the Four Corners as an oddity—its arbitrary lines are a thing to see, and so you have seen them. Bucket list item, check.

If you live in the Navajo nation, your experience of the Four Corners may include inconvenience, as you deal with overlapping tribal administration and state systems. It may be a wound—the fragmenting of your culture by the federal government. The very arbitrariness of the lines makes an impact.

If you live elsewhere in the four states, the sense of threshold might be more marked. Each state has its own character: Arizona’s prickly-heat politics; New Mexico’s cheerful tolerance and deep poverty; Colorado’s comparative plenty; Utah’s Mormonism and countercultures. For me, to stand at the Four Corners in both my homes of Colorado and New Mexico is a satisfaction. To step across into Arizona or Utah is an adventure. The lines are arbitrary and bureaucratic, but they are also cultural, personal. They create allegiances.

That is the power of lines. From one square foot to another, your identity changes.


2.  Carl Philipp Emanuel Bach, son of Johann Sebastian, enjoyed a long career as the court composer of Prussia’s Frederick the Great. His music combines traits of his father’s, new features that later composers like Mozart and Haydn would borrow freely, and other sounds all his own. It is theatrical, rhetorical, and idiosyncratic, known variously as Rococo, Sensitive Style, and Storm and Stress. Since it overlapped the Baroque and Classical eras we label it “transitional.”

But C.P.E. Bach didn’t write to be transitional: he didn’t know the future. He wrote music that spoke to his contemporaries. It is we who have looked back and sorted 18th-century music into categories: Baroque, Classical, and Other. The styles which are neither fish nor fowl get filtered out of our awareness.

Does that reflect the music’s value? Its craft and capacity to move? Or does it reflect our preference for strong filters that group things neatly together? Is it a statement of truth, or an arbitrary line?

When you are neither fish nor fowl, you risk being nothing. A quaint oddity, and no more.


3.  “Which of these things belong together? Which of these things just doesn’t belong?”

How many times did I hear that Sesame Street song when I was little? I can still see the TV screen divided into quadrants. Three squares show similar items—kinds of animals, say—and one a dissimilar. Young viewers learn what qualities create likeness. Grouping is a useful skill. But we do learn early that difference doesn’t belong.

4. My alma mater, New College of Florida, takes a non-traditional approach to education. It attracts many students who were misfits in high school. An alumnae/i Facebook page resounds with the stories: “I found my tribe at New College. I felt like I belonged.”

As I recall, some of those who “found their tribe” celebrated their new kinships with a vengeance; they became deeply tribal. Students who were not hippies, goths, or punks—visibly countercultural—could be left out once again. From the sidelines they watched the mechanism of alienation at work anew. The ones who did not find a tribe became the most deeply tolerant people I’ve ever met.

5. A coffee shop addict in the days before Starbucks, I used to think the universe had only one Barista, cloned many times. The Barista wore dreadlocks and nose rings, black indie-band T-shirts, and ripped jeans or a peasant skirt. The counterculture has its own ways of pledging allegiance, just like the mainstream. Same mechanism, different dress code.

Unique snowflakes last longer in a snowstorm than in a jungle.

Mediterranean Conservatory, Albuquerque Botanic Gardens

6. Then-presidential candidate Mitt Romney, 2012:  “[T]here are 47 percent who are with [the president], who are dependent upon government, […] who believe that they are entitled to health care, to food, to housing, to you-name-it. […] Our message of low taxes doesn’t connect…so my job is is not to worry about those people. I’ll never convince them that they should take personal responsibility and care for their lives.”

Then-presidential candidate Barack Obama, 2008: “Our challenge is to get people persuaded that we can make progress when there’s not evidence of that in their daily lives. You go into some of these small towns in Pennsylvania, and the jobs have been gone now for 25 years and nothing’s replaced ’em. […] So it’s not surprising that they get bitter, they cling to their guns or religion or antipathy toward people who aren’t like them or anti-immigrant sentiment or anti-trade sentiment as a way to explain their frustrations.”  [edited for brevity]

Makers and takers; guns and religion. They’re both shorthand for Not Like Us.  Romney wrote Them off altogether; Obama paid lip-service to engagement. But once you’ve drawn lines of difference, few will cross them.

7. The fun of a mystery novel—or a romance or fantasy—isn’t usually finding out what happens. It’s seeing how authors play with the framework and fill it with something unusual. Genre fiction creates a tidy set of expectations. Since we know what to expect, difference—even subversion—is welcome.

The “genres” of group identity create expectations about behavior, but they also make protest and subversion possible. Kicking off from the side of a swimming pool is easier than gaining momentum in open water. Frameworks provide something to resist.

Albuquerque Botanic Gardens

8. A friend from Israel never thought of herself as keeping kosher until she moved to the United States. Then she realized that she had kept kosher, simply because everything in Israel was kosher. The norm doesn’t feel like identity—it’s just life.

9. Who are you? How do you identify, and why? Tell me about yourself.

10. Advice for beginning bloggers often says: Choose your niche. Are you a garden blogger, a mommy blogger, a tech blogger? Seek out others like you, and you will build readership more easily. Preach to the choir, and you are more likely to be heard.

Be an individual, but an individual in a genre. Otherwise you will be alone. A quaint oddity, and no more.


11. William Penn was born to middle-class British society in the 17th century, when men of fashion wore dress swords. Penn became a Quaker, and he wasn’t sure whether he should still wear his sword. He asked George Fox, the Society’s founder, what to do.

Fox said, “Wear it for as long as you can.”

That story may not be true—it was first written down a century later. But that we tell it often—and that it was written at all, and became part of our lore—says a lot about what we want to be true. The story tipped me toward Quakerism. I didn’t know religion could do that: recognize so deeply that we live out faith in a journey, not a pretense of arrival; that the journey deserves respect; that adherents’ integrity—their openness to change at the right time—could be trusted. I didn’t know that a religion could value authenticity over conformity.

The next time Fox saw Penn, Penn didn’t have his sword. He said, “I wore it for as long as I could.”

12. You may not be fascinated by trends in 1990’s musicology, but I’m here to tell you that “ambiguity” was a big word at the time. My fellow graduate students and I would parse the music of Stravinsky or Schumann to debate whether a gesture hearkened back to measure x or forward to measure y. We pored over relationships in the score. Eventually we might proclaim, “It’s ambiguous.” We reveled in our postmodern ability to embrace multiple meanings.

One professor excelled at bursting bubbles. “On paper you see two meanings. But performers don’t have that luxury—they have to choose one or the other. In practice, ambiguity isn’t possible.”

13. If it walks like a duck and talks like a duck…


But ducks don’t choose. They’re just ducks.

14. Quakers don’t have creeds; instead we have “testimonies” to the Light. The best-known is peace, but the others are simplicity, integrity, community, and equality. Sets of questions encourage Friends to explore how they might live out the testimonies.

One meeting’s Query: “Do I refuse to let the prevailing culture and media dictate my needs and values?”


Assembling the fragments:

When did I become someone who writes about illness? I miss Microcosm‘s gentle essays on gardens. Other occupations dwindled when the demands of illness grew.

But is this who I want to be? Is Chronic Illness now my primary identity?

I wonder about this—the difference between a slow slide toward a new self and a choice I can make—as I wonder what it means to be on disability. I didn’t choose illness, and my inner person still hikes and travels and loves live music and provides for herself, even though my outer person mostly lies on sofas. In my head I can see both my personality and my actions and accept the difference between them. I can believe in my old self despite illness; I can embrace the ambiguity between theory and practice. But to say who I am, in that performance, I have to choose. If it walks like a duck… My choices and actions call kin with disability. I do not belong in the tribe of the healthy.

Snow Geese, Bitter Lake National Wildlife Refuge

When strangers ask me what I do, though, I hesitate to say, “I’m disabled.” It’s such a small way to define a life. (Paradoxically, it also seems like too big a burden to lay on a stranger. But why, when I was asked?)

The “elevator speech” is the ultimate identity marker: it distills a life to a few words. Its shorthand tells only a partial truth, and we all know that. But the information we expect to hear speaks loudly about which genres of truth we honor.

We do not expect elevator speeches to be about our favorite vegetables or best-loved authors—or, heaven forbid, our deepest values. We expect them to be about work. We honor those who are physically strong and neurally typical enough to work a paying job. Work signals both self-sufficiency and normalcy.

Asking “What do you do?” is a generic ice-breaker. But its subtext is, “How are you one of Us?” Awkwardness covers the moment you come out as a Them. (Retirees and Stay-at-Home Moms strike me as Honorary Us-es—I’d be interested to know if that’s true.)

Working was certainly part of my self-image—I knew it was Me—but I didn’t fully realize how much it made me an Us until I became a Them. I didn’t think of the Tribe of the Working as my identity—it was just normal, just life. Now a new box gets checked on my tax forms: I have membership in a different tribe. Do I claim that identity?

I dislike labels. I distrust the way they divide the truths we are willing to hear into ever smaller pieces. I distrust the way individuals defend the partial truths of group identity as if they were complete. I do not care for tribal thinking, which values allegiance over kindness. I am okay with being “maladaptive to dysfunctional culture and oppression.” For the last few years I have been willing to be a quaint oddity, claiming no (conscious) tribe, fitting nowhere. I wore that sword for as long as I could.

But I also find myself thinking about belonging, and the Friends’ testimony of community: the idea that we lovingly pool our partial truths and so come closer to the whole.


All labels—all—all partial truths—make it easy to forget the full humanity of those who wear them. Even so, I will claim the labels of Disabled and Chronically Ill, simply because I do not permit others to define them for me. “Taker.” “47%.” (The other common view, that the disabled are “inspirations” for the able, isn’t much more humanizing.) I am more complex than that—all those I know are infinitely more complex than that—and I claim the labels so that I can add my truth to their definition.

More precisely, I claim participation in overlapping communities, including the Quakers, Disabled, and Chronically Ill. My elevator speech is not about identity, with its own new ego boundaries to maintain, but about these communities where I contribute my partial truths.  (It is a long speech.)  Disability, or any vulnerability—any difference from the norm—sometimes brings out the worst in our culture. I find it important to call out those impulses, and these three communities give me a sturdy framework for protest.

Of course, this blog is a community as well. You are my community. I write from the standpoint of illness because it is the partial truth I have to contribute here. The issues affecting the chronically ill are not unique to us. Belonging and alienation, identity, hope and resilience—our communities all intersect with them in different ways. So illness is not what this blog is about, any more than Microcosm was really about gardens. It is a starting point.

This is a starting point.


The Color of Hope

Every year with the leaves comes the memory: walking through downtown Denver with Alan on a no-jacket day just as the trees were breaking bud. The leaves had not yet resolved into the distinct greens of honey locust and ash, crabapple and elm. They were all fresh, pale, bright, Crayola-colored spring green.

Alan: a huge enthusiasm compressed in a small body. Looking up at the trees he came alight. Between one step and another he rose onto his toes, arms reaching skyward, emphatic, like a bird about to take flight. “That’s the color of hope,” he said. (Language is too poor in italics and underlines to express Alan.)

We were in our early 20’s, and I’m not sure what we meant by hope. Something simple, I expect, but not wrong for all that. Optimism? Renewal? Possibility? The world was our oyster, so probably all of the above.

Each year the memory returns with a different flavor, depending on the sweet or bitter herbs that have steeped in it: nostalgia, affection, cynicism, anticipation. This year the flavors have been bright and savory. I’ve looked out the kitchen window at desert olive, sand cherry, rose, all free of blemish; I’ve ambled through the bosque, where new cottonwood leaves glowed against a rare gray sky, and heard Alan: “The color of hope.” A bird, eager to take wing.


To visit the bosque again was a pleasure after too long away—to walk through the giant metal-and-wire frames strewn like jacks near the levee (sentinels of an old flood control system); to kick up dust on the path between fallen branches and rotting logs; to wander among the tall trunks of cottonwoods. The new leaves were coming in among last year’s remnants. The faded and the fresh rustled together in the wind. To walk the half-mile path again among these friends was a gift.

Hope took a little tumble as my energy plummeted and my heart rate soared. The walk dwindled to a rest.


First bench. Wooden posts, no back, amid broom snakeweed and globemallow. Cottonwood crowns soar among small birds. No view to speak of, until you realize that no view is the view: a glimpse into the heart of the bosque, quiet, open, uneventful. Dull,  until the quiet seeps into your bones. Then, almost sacred.

An Icarus moment has its gifts. In the heady first days of freedom I was ready to fly close to the sun. Having left the working world with disability, I’d felt 50 pounds lighter. To have the burden of balancing work and self-care lifted: I didn’t realize how close I was to crumbling under the weight until it was gone. The world looked spring-clean, the sky bluer than even a New Mexico sky has a right to. I felt as if I had a clean slate to work with, a fresh opportunity. Oh, the novels I could write, the causes I could embrace, the mountains I could climb. So many hopes. The world was my oyster.

This mini-collapse reminds me that it isn’t, or at least not in that way. A fresh start doesn’t change the limits of illness, which is a continuing part of my story. But then, we are never without our histories; we are never not ourselves.

The bosque knows this. In years of drought, cottonwoods shed limbs. Huge ones: thigh bones, forearms. The forest floor is littered with them. They are home to small, creeping things. The shade beneath them keeps the earth cool and—sometimes—moist. Flowers spring up around them.

The trees do not regrow these branches in the next rainy April. Different ones, yes. But their lives are still shaped by the lean years. The bosque grows differently because of them.

Walking again. I think of Alan and wonder how he is. Our friendship tore apart long ago under the strain of cross-purposes. Even a thick blanket of affection couldn’t protect the thin skins that wore it. We’ve each tried since then to re-connect, but at odd moments, when the other had nothing to give. I wonder if re-connecting is even possible. Perhaps not. Instead we’ve taken thicker skins and greater wisdom into other friendships and handled them better. But then, those friendships showed us different flaws and weaknesses. Life is not an arrow fired toward perfection. It follows shifting patterns of woundedness, strength, and joy, like a kaleidoscope: always different, always the same.

Or like a fire.

Like a river.

“There’s nothing new under the sun.” Solomon might have said it cynically. But I say it in wonder, that the present is both its own, clean thing and the heir of all that has come before.

Second bench. Not actually a bench, but a tree, a fallen giant of a cottonwood near the edge of the river. Despite the great wound in its trunk it has new leaves again this year. (They are the color of hope.) I could not be prouder if I were its mother.

The tree’s bark is a landscape of mesas and arroyos worn into it by living. I sit there with my knees drawn up. The river is just visible—glints of light moving behind last year’s grasses. It’s flowing high, which surprises me. El Niño was not that generous with rainfall. Maybe the dams upstream have released water ahead of mountain snowmelt or to meet downstream requirements; water does not just flow in the West.

A century ago the Rio Grande flooded at will—a broad, shallow river in a flat plain, flowing in shifting patterns as silt and sand gave way or resisted. 50 years later, in an era that prized the swift march of progress, it had been dammed, leveed, and jetty-jacked, and it flowed straight as an arrow.


Good things came of that. But the bosque suffered. Its ecosystem depended on slow, meandering waters with seasonal floods:

Coyote willow and cottonwood, roots questing. They cannot go to meet a river
          which used to come to them.
Wildflowers and saplings cannot grow when salt cedar invades,
          blocking sunlight, hogging water, killing soil with salt in its leaves.
Bitterns and avocets cannot feed in deep waters without bulrushes, cattails, sandbars.
Muskrats and raccoons cannot dabble and splash in swift rivers with high banks.
Minnows cannot spawn in rushing water.
Big fish cannot eat their fill without minnows.
Eagles and osprey cannot eat without big fish, without small game.
          Where are the giant trees they nested in?

Now the bosque is being restored—not to a pre-Conquistador model of perfection, but to something that can thrive in its own way.

“The river is finally beginning to be seen as something with intrinsic value. After 150 years in which it was viewed as a means to an economic end, a threat to property, or a commodity, many now see it as possessing its own worth and beauty.”[1]

The jetty jacks that allowed silt to settle and high banks to form are being removed in some places, shallow channels dug in others. Some losses may be permanent. But the ecosystem of meandering waters is proving resilient—forgiving—and springing back to life.

Walking. One foot, the other. Heart beating. Breath moving. I think of the body’s own ecosystem—oxygen, nutrients, blood, nerves, glands, neurotransmitters—all working together to allow this complex organism to function. And of a smaller system still: the gut microbiome. I have been reading about it. Inside our digestive tracts lives an ecosystem of microbes. It is part signature, part biography. Two-thirds of the microbiome is unique to each person, an internal history of foods eaten or ignored, of infections and anti-biotics, of childhood dirt, of genetic inheritance, of pesticides and pollens. Imbalances are implicated in conditions ranging from lymphoma to allergies to depression (and possibly ME/CFS).

To realize that can be daunting: that you carry the consequences of chance encounters with you, and of your choices, good and bad. It is too late to undo the bad ones. We are never without our pasts; they reside in our bellies. But the ecosystem is resilient. It can be pushed to breaking point, but it eagerly wants to function. It offers that grace.


Third bench. Worn wood among salt cedar and cottonwoods. A towhee scratches at fallen leaves. The cottonwood trunks and branches are dark against the greenery. (Jetty jacks parody their easy geometry: industry mimicking life to its own ends.)

As happens on walks, hope, consequences, and microbiomes led me to Dorothy Parker. I’d read an article that described her looking back on her life with bitterness. She had not accomplished what she’d hoped or what she was capable of. The life she had lived with intensity had not produced the Great American Novel. Short stories, screenplays, book reviews, and political op-eds aplenty, but no Great Work.

The review’s author echoed that faint contempt for a life that failed to measure up. Yet Parker had worked tirelessly against Nazism and then racism. She marched. She organized. She spoke out. She wrote passionately in the cause of racial equality.

I’m not proposing these as counterweights in the scale of greatness, just puzzling over the scale. What an Industrial Era thing it is—to value a life for its output. What a Capitalist model—to ask, “What work did this life produce for us to consume?” And then, consumers that we are, to sit back like gourmands, criticizing the flavors.


Parker had been deeply rooted in the ecosystem of her life. She had worked to eradicate its foulest cankers. To have looked back in regret—to say, “Too late to achieve x; too late to be y”—and to count the health of the social ecosystem as nothing… Something in that fills me with horror. I don’t know whether it’s the equation between Great Work and Worth, or the way our culture unthinkingly accepts it as true, and not contingent on its time. Industry, mimicking life to its own ends.

Walking. The bosque yields again to jetty jacks. I cross a bike path buzzing with people who do not have to rest on benches. A pause at the bridge over the irrigation ditch to lean with my chin on the rail and watch the water: it flows straight as an arrow.


I’ve been thinking about all this because of my own transition from “maker” to “taker,” as our politicians kindly put it. What shape does hope take when disability clips your wings? When it limits the mountains you can climb—or the hours in a day you can think; when the swift march of progress as your culture defines it is not yours to take; when your life is less like a shining, green leaf and more like a sturdy trunk missing a limb or two—what is the color of hope?

At this point I have to laugh at myself. We are never without our pasts; we are never not ourselves. Even without illness I would not be an ambitious, driven, intellectual machine who could crank out 2,000 half-baked words a day. I have always been more passionate about balance than about achievement. I have never been as interested in summiting mountains as in admiring the flowers that grow on them—and the play of light under the trees, and the clouds changing shape, and the dashings and flutterings of lizards and butterflies, and in stopping to listen to that chickadee—I miss chickadees—off in the distance. I am now and have always been a mosey-er and a rambler in peaceful backwaters. Even if I had energy to climb a mountain I would never make it to the top, because I would be enjoying everything on the path way too much.

And then the sun would set.


Last bench. Round metal bars, curved back, near the Visitors Center. Uncomfortable but worth it for the cottonwood it shelters beneath. If I have been walking among elephants, then this tree is a mammoth, an ancient behemoth towering over us all and spreading its arms wide. Its canopy is thick with new life.

I think about my parents. They will have been married 59 years come June. My mom says of marriage, “You can never think you have it made; you can never become complacent. Life throws new things at you every year, and you don’t know how you’ll deal with them until you have to.”

Their marriage hasn’t followed a straight path toward ever greater perfection. It has been a meandering stream with seasons of flood and drought, and odd backwaters. They are still the same people they were all those years ago. They have grown, but they are not perfect.[2] Instead I think it’s fair to say that their reach has grown broader. They have grown more forgiving, more generous, more resilient.

This year, that is what hope looks like to me. Not a clean slate, or a fresh start. Not a bright, unspotted green leaf, divorced from the history of its tree. Instead: a greater capacity to take everything in; a broader embrace. Resilience. Grace. An ecosystem with the desire to thrive.

I head back to the car. In the path, a sparrow is enjoying a dust bath. I approach, and it takes flight, disappearing into the leaves.



1 Fred M. Phillips, G. Emlen Hall, and Mary E. Black, Reining in the Rio Grande: People, Land, and Water (Albuquerque: UNM Press), p. 150.
2 Sorry, Mom and Dad!


On Openness, Vulnerability, and Conflict



A clear pool is a rare find on this river. The Rio Grande is only half water; the other half flows with the memory of sandstone. The red-brown stone of Abo, the orange of Yeso, yellow Glorieta—275 million years of earth’s being, worn to essence and carried in the heart of the river.

Sometimes you’ll find a slow place. The sand settles. The water clears. Sunlight shines through without hindrance. Tiny fish cast flickering lights as they dart back and forth in the slow water. They are hatchlings, and their skin is translucent. Light passes through them in places, reflects in others. They look like ripples of sand on the river bed.

On a sandbar in deeper water, mallards squabble. Quack. Flap. Huff and trade places. Politics, and not the serious kind.

A screech overhead—frantic wing beats, piercing cries. Small birds harry a Cooper’s hawk, chasing, wheeling, diving. No mere squabble, this; no politics. This is war. Their shadows cross the pool, and the fish scatter. They’re at no risk but flee by instinct. Sometimes transparency—the free passage of light without hindrance—is a good. Sometimes it’s a danger. The trick is to know the difference.

* * * * * * *


Fugue I

Openness or exposure. Openness: the quality of being frank, truthful, candid. But also unprotected, doors wide to all comers. An implied safety. Confidence.

Exposure: being laid bare. It implies vulnerability, to the elements or to harm. But it also suggests hidden things brought to light: lies, plots, weaknesses.

Weaknesses. There’s the rub. Being transparent with our strengths—that’s easy. Exposure of our weaknesses… Some see it as shame, a blow to the ego. Others see it as the root of resilience. Our perspective determines our behavior, and the shadows we flee from, whether on personal, professional, or cultural levels.

Openness or exposure. In the sciences, “open data” is the rallying cry of a movement I’ve been following with interest. Science depends on replicability: the same experiment, run by different people, should yield the same results. The idea of open data is to make that process easier. Scientists provide free access to their experiment’s pool of data, along with information about methods and conflicts of interest. At its best, openness fosters collaboration, integrity, and accuracy. It speeds progress when the science is sound. It minimizes harm when the science is weak.

Harm: because science can inform policies that affect lives. Social attitudes, laws, and medical practice can all spring from scientific studies. Accuracy and replicability matter.

Some scientists worry, though, that openness might expose them to damage. They are concerned about “research parasites”—thieves of their labor, which may represent years’ worth of work. They fear harassment by non-scientists with ideological agendas around hot-button topics like climate change. Some worry about requests made “vexatiously”—to impede research rather than promote it.

A recent essay in Nature suggests a guide for testing sincerity of motive: Is a request about the use of data or its abuse? Scientific openness or weaponized exposure? I’m not sure the distinction matters.

I understand the double edges of transparency. What are the scientists’ fears but personal fears writ large? I have always preferred good, thick walls of privacy, sheltering what I care about from misunderstanding and misuse. It’s a siege mentality, perhaps, to see safety in fortresses, but a natural one. Even here my thoughts emerge through layers of meaning. I do not like feeling vulnerable.

The last year, though, has made me feel vulnerable indeed: my sister-in-law’s death from cancer; two cancer surgeries of my own; an unwanted change to my job that took a third of my income and my health insurance; worsening pain, cognitive difficulties, and energy. I am no longer financially independent. I am not quite disabled, just abled in a very narrow bandwidth.

I have not written openly about much of that. The line between sensible internet privacy and truthful sharing is unclear. And I hate exposing the truth of vulnerability. I can no longer fully take care of myself. I want to hide, like a small fish fleeing shadows, or to lash out in anger.

But the deeper into illness I sink, the more my family steps up to help. The brittle strength of self-containment is yielding to the resilient strength of community. To hide vulnerability is to be false to this new, better strength. I am struggling to discern that truth, and to overcome the instinct to flee.

The instinct to fight.

* * * * * * *


Fugue II

Not all conflicts are wars. War is openly declared, armed hostility. Metaphorically we use the word to stand in for disagreement, struggle, or antagonism. But that reflects a—lazy—lack of imagination more than an understanding of war.

Let us be clear. War is fight-or-flight hardened into policy. War is the utter risk of life, limb, and moral conscience. War is the will to commit atrocities that dehumanize and destroy. War is Improvised Explosive Devices spattering roadsides with brains and guts and limbs. War is land mines blowing children to pieces generations hence. War is civilians dying of starvation and dirty water; diarrhea; shortages of medicines. War is irreversible brain damage from flying shrapnel. War is people so maimed in death that they cannot be identified. War is refugees drowning on overladen boats. War is nightmare after nightmare, PTSD, and sleep shattered by screams. War is foul, ugly choices between life and death.

War does not mean disagreements, unfortunate happenings, or tensions: ducks squabbling on a sandbar. I will not use war lightly, to describe the ordinary struggles of life.

Not all conflicts are wars. The trick is to know the difference, because they call for different behaviors. We often forget that. The strategies of war—attack, defend, withdraw—seep through every disagreement. Our tools for encountering difference come from metaphorical battlefields. We “defend our positions” in arguments; we “undermine” our opponents. These strategies may bring victory, but not necessarily peace. For peace, both sides must lay down arms and be willing to be vulnerable.[1]

Despite our peace testimony, Quakers also get trapped in the strategies of war. Our preferred strategy is often retreat: avoiding conflict by withdrawing. My Quaker ancestors in colonial America moved their entire community to escape the Seven Years’ War. In Friends’ Meetings, disagreements can fester in silence rather than coming into the open. I often duck out of conflict with a smile and nod.

We Friends recognize that our tools of disagreement—attack and defend—are warlike, no matter how gently we use them: you cannot make peace with them without simulating war. But sometimes we fail to recognize that retreat is also a strategy of war. It prolongs or even escalates conflict. You cannot achieve peace—active reciprocity—by retreating. Avoiding conflict does not create harmony, any more than victory does.

Some struggles are easily mistaken for wars. I dislike battle metaphors for illness, but they are hard to avoid when illness threatens at deep levels: self-care, food, shelter, self-determination. You are fighting for the means of life and for your identity. I have lost my independence. No prose can do that justice. I want to scream it from the top of Sandia Peak until granite and sandstone echo and the Rio Grande Rift hollows to bedrock, until my lungs bleed and my voice shatters. That loss rakes me raw. My independence has been who I am, my consolation as my world has grown smaller. I am frightened for the future in ways I have never been. I am fighting an undertow. Drowning isn’t war, but fight-or-flight doesn’t permit many shades of nuance.

My workplace showed me the deep pit of vulnerability and reminded me how little I am. When a co-worker’s thoughtless words cut to the quick of fear, I lashed out in a way I seldom do. With my entire arsenal of eloquence, with all my weapons of logic and righteous fury, I set out to verbally annihilate. And I succeeded. I became an engine of war. I became what I was fighting against as I, in my turn, dehumanized the person before me. In protesting injustice, I was unjust.

I did great harm, great wrong, because I forgot that this conflict was not a war. And the harm done to me does not excuse that.


I’ve been thinking about these distinctions—between openness and exposure, conflict and war—because of an ugly controversy about my illness. In the thick of the open data debate stands the PACE trial, a 2011 British study of treatments for ME/CFS.[2] The researchers theorized that ME/CFS comes from a mistaken impression of lingering illness, creating a vicious cycle of inactivity and deconditioning. It assumes ME/CFS to be psychogenic, though the onset may have been biological. The PACE trial tested four different therapies and concluded that the best were Graded Exercise Therapy (GET) and Cognitive Behavior Therapy (CBT) to overcome patients’ “false illness beliefs.”

Headlines shouted that ME/CFS was mental and curable. Private insurers took note, as did disability benefits providers. In the UK, GET and CBT became the National Health Service’s primary treatment for ME/CFS. Because of PACE, patients there can be denied care ranging from disability income to wheelchairs to close-in parking permits.

The UK is a scientific powerhouse, and studies there carry weight globally. Laws, social attitudes, and medical practice across the developed world are shaped by this science. PACE and its underlying assumption that ME/CFS is a psychosomatic illness have had an enormous impact.

Conversely, in 2015 the USA’s Institute of Medicine conducted an exhaustive survey of the scientific literature on ME/CFS and concluded that it is a serious, systemic, biologic disease. It affects the endocrine, immune, and central nervous systems. At its worst, it is as debilitating as late-stage AIDS or end-stage renal failure. A hallmark symptom is Post-Exertional Malaise, a relapse of flu-like symptoms following activity. The IOM strenuously discourages GET and CBT.

Psychosomatic illness or grave, biological disease. This is a serious conflict. The logical premises—and the conclusions that follow—are so different that proponents of each view are almost unable to reason with one another: their world view has too little in common.

Full disclosure: PACE does not ring true with my experience, and I disagree with both its premise and its findings. My illness began after a flu 20 years ago. I ran a low fever off and on for months and struggled with exhaustion. I pushed on but could do less and less: 45-minute walks turned into 30 minutes, then 30 with a rest, then 20. One day on a long walk I collapsed; I was diagnosed a few months later.

Worse than the exhaustion was the cognitive dysfunction. I once forgot where the turn signals were on my car (not in my purse, where I looked for them). I was a music historian but couldn’t remember basic things for hours at a stretch—how to spell Beethoven, or what country Bach was from. I still seldom listen to music because the noise is painful. I have a PhD from an Ivy League university, and I sometimes struggle to understand children’s books.

I drink 20 glasses of water a day to keep my blood pressure from plummeting when I stand. I strategize energy-saving ways to brush my teeth. I do not leave the house on evenings and weekends so I can hoard energy for a 5-hour workday. And I exercise. For the last 20 years I have swum laps or done gentle aerobics. My health is declining, yet even now I do 30 minutes of seated yoga five times a week. I am not athletically fit, but I am not deconditioned.

I want to know why, if GET works, I have lost my independence. If GET is going to help me, I’d like to know when, because I’ve been exercising for 20 years. Where is my recovery? Where is plan B, when GET fails?

I am lucky, and have lost only about 40% of my capacity. 25% of us are housebound or bedbound. Some cannot speak. Some must lie alone, year after year, in darkened rooms with blindfolds and ear protection, because movement, light, and sound are excruciating. Some cannot sit up without fainting or vomiting, because their blood pressure drops to nothing. Some must be fed through tubes. Some are paralyzed or have seizures. Some are in constant neurological pain.

I believe ME/CFS is a biological illness and that a biological model holds out the only hope for recovery.


The PACE trial’s recommendations of CBT and GET are only part of the controversy. Many patients have found flaws with the study design and interpretion.[3] Among their criticisms:

  • The researchers did not declare all conflicts of interest to participants, including work for insurance companies.
  • Objective measures for improvement (including a timed walking test) were abandoned mid-trial, leaving only subjective assessments.
  • The threshold of recovery was lowered mid-trial, so that patients could enter the trial, get worse, and still be considered “recovered” at trial’s end.
  • With the new recovery measure, 13% of patients in the study had “recovered” before participating in treatment.

Patients have asked to see the data in ways consistent with scientific practice. They have called for openness—to have the inner workings of the study exposed, to see the way these decisions were reached. All are hoping for truth; most are hoping to have the study retracted; some to see the scientists’ work exposed as hollow. A few are vindictive.

No matter. Their requests for openness have been dismissed with contempt—in the Nature essay on open data, PACE questioners were lumped with climate science deniers. Are the researchers protecting work they believe in? Their reputations? Either way, they’ve maintained high walls, resisting exposure of the data. I doubt they trust the patient community to be neutral—to examine the data without intent to do harm; not to twist findings to their own ends. (Ironic, since many patients believe the scientists have done that very thing.)

I’ve largely stood back from this controversy: my own immediate concerns have taken priority. But I’ve also stood back because the conversation has been ugly. You will know the patterns from your own spheres of activism: the camps of “us” and “them,” the utterly right and utterly wrong; the “enemy” de-faced and dehumanized, and fair game for vicious treatment. Attack provokes counterattack, and it goes round and round. We are Democrats vs. Republicans; Tories vs. Labour, and there is no common ground to stand on.

Dehumanize, attack, counterattack: the strategies of war. What does a Quaker do in the face of war except retreat—or protest the war itself? But as I have learned, retreat is a strategy of war, and one which prolongs conflict. And the warlike behaviors… I do protest them. I hope I do not engage in them. But I also understand that injustice is driving them, and that the injustice must end.

What is at stake for ME/CFS patients because of PACE? If ME/CFS is a grave, biological illness, then a lot. Income to replace a worker’s wages: food and shelter. Medical care. Real research into causes, treatments, and cures. The alleviation of suffering. For some the stakes are literally about survival—a threat caused not by our illness but by our fellow humans’ response to our illness.

What is at stake for the PACE study’s researchers in dismissing the patients’ concerns, their calls for openness? I am not sure. I would like to understand. Perhaps principle; an ideological sense of rightness; a school of thought; the scaffolding of a health-care system. Reputation, which could translate into income opportunities. Perhaps emotional or physical safety: researchers have claimed harassment and threat by patients and their families.

I do not condone emotional or physical threats. But to patients, for whom the stakes are so high, this conflict is felt as a cold war waged on the ill. We are on the down side of a power imbalance—an assault by large medical and academic institutions, protected behind ivory towers, against the vulnerable, who can barely stand. When survival is threatened, fight-or-flight kicks in, and fight-or-flight doesn’t permit many shades of nuance. Activists are small birds harrying hawks.

I still struggle to understand the weight of the PACE authors’ risks—to balance them against basic medical care, food, and shelter—and to understand the contemptuousness of their response. But the strategies of war are self-perpetuating. Attack provokes counter-attack in defense. I don’t believe this situation is a war on the researchers’ side—that the stakes for them are as high as physical survival. But war is a reflexive response, a habit, even in situations that are only conflicts.


This conflict may soon be resolved by a different kind of exposure—the international limelight. In the last few months, people outside the community of patients have taken issue with the PACE trial: David Tuller, academic coordinator of the graduate program in public health and journalism at UC Berkeley; James C. Coyne, professor of Health Psychology at University Medical Center, Groningen, the Netherlands; Andrew Gelman, director of the Applied Statistics Center at Columbia University; Ron Davis, director of the Stanford Genome Technology Center (whose son has severe ME/CFS); and others.[4] They have brought the study to the attention of the broader scientific community as it considers the issue of open data as a whole.

Tuller, Davis, and others have requested the trial data. So far all have been refused. The PACE authors have called the requests vexatious, or have cited risks to participant anonymity. (It is worth reading the response to Prof. Coyne’s separate request in full.) Some of PACE’s co-authors are now requesting immunity for university researchers from the UK’s Freedom of Information Act. But pressure from authorities the world recognizes (i.e., not patients) is mounting on the PACE authors and their publishers, The Lancet and PLoS, to show the data or retract the study: to allow the science to self-confirm or self-correct.

Funny: I have always seen the scientific method as a model for peace, no matter how duck-on-a-sandbar squabbly individual scientists may be. Scientists work across disciplines, nationalities, and political boundaries. In theory, their work springs from openness to ideas and engagement through curiosity: the search for clear pools of insight amid gritty rivers of information. Exposing flaws is part of discovery; the retesting of data evidence that truth matters more than theory. Even failure contributes something valuable to knowledge. The brittle strength of individual effort yields to the resilient strength of the community.

It is hard to disarm, hard to be vulnerable. Openness is exposure.

How much do I believe in the scientific method? If the PACE trial’s data are released, am I willing to accept the findings, no matter what? To listen to them if they prove sound? Yes, if they are weighed appropriately with all the other data. Because what I want is not to be right or to do harm. The big, transparent truth that seems to have disappeared in all this: we just want to be well.

This conflict should never have become a war.



1 This section relies heavily on Sharon Strand Ellison’s Taking the War Out of Our Words (Berkeley, CA: Bay Tree Publishing, 2002).

2 Good summaries of the trial and ensuing controversies have been written by Rebecca Goldin and Leonid Schneider.

3 Among the many calls for review, Tom Kindlon’s work stands as exemplary. An index to his publications can be found here. MEPedia provides a patient-centered overview here.

4An index to Tuller’s influential series of articles in Virology can be found here. Coyne summarizes his concerns here and declares the “Moral Equivalent of War” on the study’s practices here.