The tree stood lookout. It was no protector, no stern, armed guard challenging all comers. Friend or foe? It didn’t judge.
It just stood, tall and alone, on the sandstone bluff overlooking the campground. Standing still, silent, it spoke of change. It pointed out the nuances of sky and wind, interpreted their meaning anew with every shifting cloud. It heralded the present. It did not want you to miss any savor of shape or color, light or shadow, the passage of time, the hum of eternity behind it.
It never looked the same for ten minutes running. A different backdrop gave it new impact every time you saw it. Yet it never changed. It was only, always, ever, eloquently itself.
It is the feature of the landscape I remember more than any other. My fellow campers remarked on it with affection and even awe. It stood so tall in a place of salience, an exclamation point in a landscape of dots.
Because of this tree, I couldn’t take time for granted. It made the world too intriguing in the now. “This moment is new and will never come again,” it said. “Look. Look!”
What part of you stays the same, and what changes when your backdrop alters? When you stand in different lights? Who are you really?
And how does the word you speak in the world change in different contexts?
Living nomadically has made me wonder that anew, but the question of identity has plagued me for a while. We all have images of ourselves and who we are, but I have come to distrust identities that are contingent on circumstances—that can be taken from you when circumstances change. Health, ability, employment, relationships, geography, communities—all those things can change, most of them without our say-so.
We are also given identities without our say-so. Income, gender, physical ability, race, ethnicity, appearance, sexuality, and more all play a part in forming who the world thinks we are. What a productivity-driven culture thinks of me for being disabled, for example, for living nomadically, being middle-aged, or female, or single—relatively little of it jives with truth. But it is still hard not to fall for the distorted image reflected back to us, to separate ourselves from those partial truths to see clearly.
Maybe the quest for identity—who am I really?—is the wrong quest, an endeavor to root ourselves in sand, which cannot nourish or anchor us, rather than soil or stone. Maybe it is wiser to root ourselves in the depths of what we value. Not in the self-image of being people who value certain things, but in the values themselves. Being. Gratitude. Wholeness. The behaviors that grow from them.
Maybe the point is to find your place of salience. To be so deeply rooted there that you can stand tall and herald this moment’s truth as it shines around you. “Look!” you say.
Whoa, there. Easy. Just breathe for a minute. Slowly.
Taste the air, sense it. Feel it in your lungs.
Come away from the rest of the world, and focus. One word at a time. Don’t skim for meaning. Enter fully into this world, where a raven flies past, rasping, and Western kingbirds chip-chip-chip from the neighbor’s sycamore. Phoebes whistle and blow raspberries from the roof. Someone’s nestlings begin cheeping with high, hungry urgency.
The sky glows azure, its brilliance not yet scalded by the sun. The breeze is cool. Sunny angelitas nod on long stems, and feather grass waves lazily back. Chamomile scents your fingers where you ran them across the fuzz and froth of flowers. Eyes closed, from the depths of a cushioned seat, you raise your mug and for a moment drink in the rich, dark aroma of coffee. You take the first sip.
This is the world to live in right now. Let the words of it slow you down.
Words do more than lug dictionary meanings around. They open doorways to transformation. The French poet Stéphane Mallarmé, at the end of the 19th century, grieved over words used like money—coins exchanged for the product of meaning. News stories, listicles, memes, plot-driven genre fiction: transactions offering nothing beyond the surface. Their words are not symbols evoking deep essence or truth.
I have been reading. Julie Rehmeyer’s memoir Through the Shadowlands, Laura Hillenbrand’s Seabiscuit, Paul Tomkins’ thriller The Girl on the Pier. All are marked by rich descriptions, with unusual depth of detail. These authors have observed the world with attention; they have taken time.
Or time has been handed to them—the time that is gift and curse to those forced out of the mainstream by illness. All three authors have been ill for years with ME/CFS. No matter how quickly the books’ events move, their sensory worlds unfold at a gentle pace—a walking pace with rests.
A prairie lizard darts onto the patio and halts to do some pushups. He shows up for work most mornings about this time. With his broad, brown back and pale ochre and gray stripes, he blends into the garden’s grasses and stones and dried leaves. Even on concrete he looks like another dappled shadow. I’ve just watered, and his long tongue flicks out to lick droplets from a leaf.
I recognize my own work in these authors’—not its merits, but its rhythms and details; the unfolding of a rich, sensory world that is the deep context for events. I worry about that: the burden my writing’s pace might place on readers. “Tl;dr” is the kiss of death for essays. I say this not seeking re-assurance but to think how best to convey my ideas.
My ideas are slow ideas. They keep emerging the same way, perhaps because I keep seeing the world the same way—at a gentle walking pace, with rests.
In the dense, creeping greenery of thyme-leaved speedwell, a beetle struggles on its back. It is missing a leg; one side looks maimed. Just as I decide to end its suffering I hear a flutter of wings. A sparrow lands beside it. She is all tans and fawns and duns, like branches waving in sunlight, like sunlight rippling on a river bed. Every muscle taut, she looks at me, at the beetle, back at me.I begin to suspect just whose nestlings were crying with hunger. Quick as a spark she grabs the beetle, many times the size of her beak. Then she’s gone.
What is the message of this slow unfolding? In being true to the world I see, in not trying to “pass” by aping the fast pace of the healthy, what do I hope to accomplish? Am I a small child lagging behind bigger, faster ones whining, “Hey, wait for me”? Am I proud of my pace, self-righteously scoffing at a speed-driven world where rest is snatched frantically after work and errands and meetings and drop-offs and chores and date-nights out? Or am I sharing slowly because I see good things in slowness and wonder whether you might, too?
I wonder whether my intent matters—the words and pace are the same, no matter the attitude behind them. I wonder what your perspective is. Impatient? defensive? appreciative?
I ask because I am trying—may always be trying—to understand what it means to be permanently out of rhythm with the world; to understand Disability as a personal experience, a social status, and as a movement.
To be Disabled is to have a recognized, legally protected status unavailable to the “merely” ill. To be Disabled is to have the legal right to participate fully in the life of your community: the right to have barriers to participation removed, whether voting kiosks that require standing, ballots with tiny print, stairways, gargantuan parking lots, PDF’s unscannable by text-to-voice readers, or heavy doors. These barriers are erected by the Temporarily Able-Bodied (we are all temporarily able-bodied, no?), who may not recognize them as barriers.
What does the world hear when we ask to have barriers removed? Does it hear us whining for everyone to wait up, to inconvenience themselves for an “unimportant” minority? Does it hear us judging the temporarily able-bodied in righteous victimhood? Does it hear us as fellow humans whose perspective matters?
Are rights determined by what you hear, or by our intentions? Do they depend on your belief? your emotional reaction? When are rights objective truths—inalienable?
I have come across this idea often lately: “My biggest problem is not my illness/disability. It’s the obstacles set up by the well/able-bodied.” One obstacle is time. The resistance to offering extra time, different time, to the wheelchair user getting on a bus; to the woman with arthritis fumbling at checkout for her credit card; to the child with autism’s intense, hours-long focus on a single project; to the deaf person reading movie subtitles and laughing out of sync; the student with dyslexia needing extra time on a test; the person with illness needing pauses to rest.
How you inhabit time is a measure of certain abilities. The rhythms of disability are often manageable on their own, but they become unmanageable in a world that doesn’t hear them.
Over the steady pulse of cricket song I hear a whistle, like fireworks before the bang, over and over. A tiny body nosedives from a cloudless sky, pulls up, dives again. Quick eyes can follow the motion from one end of the U to the other. For their weight, hummingbirds accelerate into a dive faster than fighter jets.
This little fighter pilot is courting. After a few more U’s, he starts zig-zagging near one branch of the desert olive. Ah, there’s the female–an iridescent patch among the greenery. Her creamy throat flashes as she turns her head to watch the male.
He begins again—great, diving U’s and short zigzags. Then he stops on a branch to rest, and I have to laugh. To these high-speed bullets of hunger and irritation, rest is critical: so critical that even when showing off for a lady, the gentleman can take five. And the lady will wait to be dazzled, because she understands. It seems to be a point of honor among hummingbirds—to wait out another’s weariness, to respect the need for rest. I have witnessed two fighting males stop mid-battle for a breather, and resume a few minutes later.
The male begins diving again. The female lifts off and joins him for one breathless moment midair. Then they both wink out into the ether.
Even as the youngest child I seldom had to ask my family to wait up. We hiked every weekend in the Colorado Rockies, and my family would match my pace. “You’re only as strong as your weakest link,” my dad would say.
I didn’t relish being the weakest link, but Dad meant no judgment. He simply spoke truth, that a child of seven is not as strong as children of eight and fourteen. I am glad my small legs did not have to keep pace with my six-foot tall brother’s long strides. Was it more fair for him to reduce his stride to mine? My parents chose a third way. Instead of making time or miles, we made up games. We explored the niches of empty pine cones and found faces in juniper trunks, listened to aspens rustling and pine trees rushing. We rated thunderclouds and leaped over roots and stones. We learned a lot about wildflowers.
If my parents had had different priorities, I would have learned different lessons: to see littleness as a challenge to overcome; to push myself to be everyone’s equal; to achieve quantifiable goals—to summit the mountain—at all costs. Those might have been good lessons.
Instead we learned about family unity, creativity, give and take. We learned to relax, play, observe and explore, to appreciate. We learned the freedom of enjoying where you are. (And we learned an awful lot about wildflowers.) What my parents taught us in embracing the “weak link” was a whole other source of strength. It was a third way—not a reversal of the values of competition and accomplishment but a completely different set.
The strength of harmony looks much different than the strength of achievement. It is a beautiful strength; it unfolds slowly.
An orb-weaver has spun a web between two uprights of a tomato cage. The spider is smaller than my little fingernail; its web is delicate, fluttering in the breeze, shining in the sunlight. Each angle and join, the radiating symmetry—it’s perfect. By noon it is always gone. Every morning, though, it has been re-spun in a slightly different place. Watering the containers is a fraught enterprise, and when I bump the tomato cage it bounces like a spring. The spider remains steadfast at the center of its web. I only see orb weavers for a few weeks’ mornings each summer. I don’t know what they do with the rest of their lives.
I wonder whether rhythm—salient patterns moving within a larger, recurring timespan—can indicate relationship. Watching the orb weaver, its rhythms of spinning and dismantling, its seasonal appearance and disappearance, I see how tangential our lives are. The spider has its own being, with its own integrity and center; I am largely irrelevant to it. The world in which I am the center has limits. Still, our separate rhythms intersect, and we are interdependent, too. I provide the flowers and water that attract a spider’s prey; the spider feeds and keeps my garden healthy.
So many rhythms: the slow, years-long branching of trees; the steady, weeks-long chirping of crickets; the leisurely, days-long opening of flowers. The halting movement of injury; the quick, tense flight of a bird both predator and prey; the 1,000 beats per minute of a hummingbird heart; the unmoving spider in its web; the woman at rest in the Adirondack chair.
So many relationships: provider and receiver, predator and prey, independence and interdependence. No one rhythm is the center. I suppose that’s just logic. An ecosystem, with its many niches, pre-supposes many life rhythms to fill them.
Daylight behind him haloed his white hair. A trim figure in sky-blue polo shirt and shorts, he looked fit still, despite stooped shoulders. But the card-reader confused him, and the cashier’s explanation didn’t help. Dementia kept him from following her words. Seeing all of us and our grocery carts waiting, he stammered an apology. The cashier explained the reader again, slowly, with different words, one step at a time, patiently, cheerfully. No good. The man grew more distressed at slowing us down, despite our reassurances. He did not seem to expect his rhythm to be accommodated. Like the child on Camazotz, he interrupted the dominant rhythm of speedy efficiency, and he expected punishment as if for a sin, to meet rudeness and impatience.
Yes, I wonder whether rhythm can indicate relationship. Certainly our relationship with time. Do the rhythms of our days suggest that we try to control time? Or do we engage with it? Do we consider it our own, to divvy up as we see fit, or do we participate briefly in the ongoing flow of ages? How many rhythms do we believe time can contain?
Rhythm may show our relationship with words. Maybe we skim quickly for meaning, looking for bullet points we can use. Or we slog through technical information, seeking to master it. Or maybe we let words carry us into a whole other time, where images connect back and forth and the very sounds delight us, where we live different tempos as they unfold. Maybe we are discerning readers and adapt our pace to the text.
The time we enact when we read can enlarge our inner world. It can transform us. Or we can approach all words the same way—like money exchanged for something we can use.
How we approach one relationship can indicate how we approach others. Our relationship to time can mirror how we relate to people—maybe not as individuals, but as a whole. The idea that time is money—something to be capitalized on to produce value—is dangerous. It means that the speediest, most efficient users of time are worth the most. This attitude may be subconscious (the man with an angel’s hair, distressed by his slowness, as if he had no right to his own rhythm), such a given that we accept it unthinkingly. It may not cause direct harm one on one. It can, however, lead us to devalue different rhythms, to resent those like the disabled who interrupt our speed or remind us that time is not ours alone. That our rhythms are not the center of the ecosystem.
The dominant rhythm of speedy efficiency is not just a reality of modern life to be (laughingly) bemoaned. It is a structural evil: a culture-wide, unquestioned assumption that devalues a class of human beings for things they cannot control. Those who perpetuate structural evil, even if they commit no direct harm, are still complicit in it.
If this is true, then a less controlling, efficient approach to time is not a “nice idea,” like eating more vegetables. It is not about enhancing your quality of life, but ensuring others’ right to participate in community at the rhythms their minds and bodies give them. It is a moral imperative.
“Time is money” is a cultural fabrication, not a universal truth. A less exploitative approach to time might yield a different strength than the strength of speedy efficiency.
It might be beautiful.
My neighbor is having a party—his birthday again already. His small garden glows with fairy lights as dusk deepens. A bossa nova eases its way into quiet conversation and cricket song. Laughter rings out. Above the wall two heads are just visible, poised, turning together as they dance. In my garden the spider may spin, but lizards, birds, and beetles are at rest. The moon is reaching full, and the angelitas gleam silver in its light. A few bright stars shine despite the moon, wheeling slowly, imperceptibly beyond us.
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.
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.
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.
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.