Take These Broken Wings

22 years sick, 15 caught indoors. Horizontal, drapes drawn. My cat, my caregiver, my Klonopin. And this blog. Dead of night. Me, singing it.

[tangerinebeak]

He Calls Himself M.E.

I live inside a house, a house that has no door. My captor is an illness, with the build and the might of a minotaur.

His name is Myalgic Encephalomyelitis. He calls himself M.E.—because once he has found you, your own myself goes missing. He takes away your me.

He keeps me locked in shadow. He lays himself on top of me. I cry out.

He crushes a filthy palm against my tongue. I try to kick. He pins my limbs.

I am buried under the weight of him. Gnats roam his pelt. They pinch my skin. I want only not to feel.

At night I hear the other women, their stifled howls in other rooms, rooms I cannot reach. Down halls built labyrinthine, his footfall thuds like mallets.

M.E. has henchmen, naturally. They call on me all hours. Postural Orthostatic Tachycardia Syndrome, he goes by the name of POTS. His stride is long, his cloak a wing. It seems to hum and whir.

He waves his arms. His sleeves flip back: fine-boned wrists, a cloud of black. Tiny red-eyed vampire bats. They flap in a fury against my ribs. Fanging for blood—before it pumps the heart, before it sates the brain.

I reach for a wall, brace myself, fall into a crouch. POTS laughs. He pokes my shoulder. I tip right over. I am wan. I gulp for breath. POTS whistles high and tight.

His bats rise. They’re gone. I can’t stand up.

A phantom flutter bites into my breast. Hashimoto’s Thyroiditis is fat as a slug. He blinks real slow, like a man who can’t be bothered.

Outside, the sun bakes the sky—except I wouldn’t know. Hashi controls the thermostat. My room is brisk as January.

I tuck my comforter under my feet, my hips, my forearms, I pull it to my chin.

No matter.

Hashi is here, greasy strands slicked across his scalp. He gives the blanket one small tug—he’s got hold of my fingers, hold of my toes. Their tips take on a glacier’s sheen. A chill rolls into the all of me.

On his way out, Hashi snaps off a fistful of my hair. He lets it drop.

Whatever. He doesn’t care. Adrenal Fatigue used to row crew. She sports collegiate sweats—exclusively.

Nights she nudges me awake. Every two hours, maybe three. Mornings, a paper bag gets crammed over my head.

If she’s feeling punchy, she might just cut two eye holes. Mostly, I stare at empty brown. This, she says, builds stamina.

Either way, I’m never not exhausted.

By five, she lets me take it off. She’s not so bad then, really. She tells lewd jokes. She pets the cat. She teaches Texas Hold'em.

At nine, she slaps on pounds of lard. My thighs, my butt, my upper arms. She likes her gals chunked up.

I tell her I want the skinny back.

She laughs. Vanity? You think you’re allowed that? M.E. has three teen daughters: Leaky Gut, Gut Dysbiosis, Candidiasis. Big into arts and crafts, my intestines their pet project.

The eldest likes to scrapbook, her scissors sting like flame. She has me buckled over, weeping for the pain.

The middle one inflates my tummy: a balloon she papier-mâchés. I am relegated to elastic loungewear waists.

And the youngest with her bedazzler! Dime-store rhinestones geyser out my bowels.

I’ve culled my diet to five stewed foods. I gorge on lactoferments. Regardless.

My stomach lining is macramé, my intestinal wall is paper lace. Each snowflake the sisters cut, another toxin in my blood stream, another nutrient gone to waste. Epstein Barr wears Tony Lamas. He's always watching. The mean is in his eyes.

He watches for when I get busy, he watches for when I show joy, he watches most of all for when I carpe the damn diem, and that is when he strikes.

He slams me against the door frame. He kicks me to the floor. I’m curled at his feet, I’m begging: please, not this time, no, I didn’t mean to, really.

He lights an American Spirit. He flicks the match head at my face. I shut my eyes. He laughs. The heels of his cowboy boots click away.

The air is coarse with tobacco, my mind all soot and blur. I cannot move. I cry three days.

It’s two weeks before being alive feels kind of okay. My immune system was once a vision, her muscles lean and coiled. She roared into battle, her arrows thrummed. She never knew a loss.

Twelve years she has hunted M.E.’s henchmen, she has chased his band of miscreants—Borna, Parvo, Entero; Chlamydia Pneumonia and Mycoplasma; Ehrlichiosis, Humanes Herpes 6.

She has thrown herself on M.E.’s back, she has stabbed his sides, she has pierced his neck. For what?

She has been flung against walls, she has broken three ribs, she has lost the skin off her knuckles.

She is hunkered in a corner now, barely aware who’s in the room or whom she’s supposed to throttle—maybe she’s the one who started it, maybe she’s what’s wrong, she’s why I’m still here?

She pounds her temples. She tears her gnarled hair. She rakes her arms red.

Take that, you, she says.

She lives in a house, a house with no door. Her captor has the build of a minotaur.

[tangerinebeak]

In Memorium

November 1, 2021

My parents enter my flat in Berlin.

The cane in my mother’s hand bangs the floor, the wall, her thigh.

“Here’s a step,” my father says, grasping her free arm. “Up. Now down.” His shoulders bowed, intent on nothing but my mother’s feet.

Each one rising and falling, probing the air.

Driftwood caught on low tide.

She wades toward me.

“Mami!”

Her eyes are clouds. She looks nowhere and everywhere.

“You made it,” I say.

Beside the sofabed, where I am propped, I have positioned a sturdy wooden chair.

Yellow. The color of daffodils. The color of spring.

Outside, rust-colored leaves curl and crinkle. Dusk will come too soon.

My father lowers my mother onto the chair. Immediately she slides forward. Her coat too slippery, her core too weak. He plants her on the seat anew, deftly unwinds her from her outergear, unzips her knee-high boots.

Rings of snowflakes dance their way up charcoal stockings. Cerulean scarf whipped around the neck, cheekbones high and apple red.

She grips the arms of the chair with ferocity.

How she is still the most stylish woman in the room I do not know.

Only her face, frozen in childlike alarm, gives her away.

I bend down and tuck her feet into woolen Pantoffeln. “For the small-footed people,” I murmur in German.

I send my father out on a walk.

“How was Garatshausen?” I ask. “Did you get to rest?”

“I sleep a lot!” I can hear the pride. And her tongue straining in a mouthful of pebbles.

“I’m glad,” I say. “Were there lots of visitors?”

“Ja.”

“That must have been exhausting. So many people, so much talking.”

“It was.”

“Probably they can’t comprehend how hard it is. How much strength it takes.”

“They cannot.”

My mother’s cane leans against the sofa arm. Enamel butterflies skitter up its staff. Glinting and brazen as the cloisonné earrings that swung from her earlobes in the eighties.

How she commanded a room then.

“You know…” I say. “This is the last time we will see each other. In person.”

“I think so,” she replies.

“And I don’t have anything planned to say.”

“I don’t either.”

Gently, I reach across and touch her cheek. “Your skin is amazing.”

She says, “No, your skin!”

“I’m wearing makeup!” I laugh. “And still your skin sags less than mine.”

She protests. We both know she is wrong.

“I am cold,” she tells me.

I swaddle her in the softest knit blanket I own. Even her arms are tucked in tight.

“Let’s take selfies!” I declare.

One photo in, and my mother catches a glimpse of herself on the screen. “OH, GOD!”

She throws a corner of the blanket over her head and sinks down. She is now nothing but a semi-horizontal striped burgundy burrito.

Promptly I snap another selfie of us both.

She pops her head back out, eyeglasses cocked, silver hair mussed.

“Another!” I announce giddily.

She forces her hands through the burrito’s opening. She flaps them like a pair of flippers on either side of her cheeks.

“And another!”

Her smile cracks her face wide open. It is enormous, unbridled. I am tipping over with laughter.

Who is this Mami? Her sharpest edges shaved away.

It’s ever since the PSP. Our calls in 2020 take on an unfamiliar tenor:

Illness is not a failure.

Illness is not a weakness.

Illness is as much a part of life as health, as birth, as weather.

I say it as an incantation, I say it as something I had always wished to hear, I say it as a track laid down beside the Teutonic militarism, the Reich bravado, my mother was raised on. I don’t know that she believes me. But she humors me.

And this is new.

“I understand,” she says.

It’s become like slicing soft butter to broach such former unthinkables.

To pose a string of less than pleasant questions over the phone:

How is the swallowing? What about balance? And your energy? Can you do your exercises?

She is surprisingly amenable to all of it.

“You know,” I say, “sometimes when I talk, when I’m walking the length of a sentence, just a sentence!, suddenly, RIDICULOUSLY, I’m standing at the edge of a cliff, I’m staring down a ravine. And there is NOTHING. All I need is the next right word. But it’s GONE. No words. The brain is empty.”

“Yes,” she says. “Yes yes yes!”

I dare go so far as to tell her, There is no shame in a walker, there is no shame in a wheelchair. I have one, too. This is when she balks. “NO! AWFUL!”

It is awful. It is brutal. It is unrelenting. She should be mad.

As the years pass, and our calls turn to FaceTimes, my mother grows muter and muter, often floating somewhere fuzzy, barely reachable to the rest of us.

I sift through my memories, plucking shiny scraps of sea glass, holding each to the light for her to see.

“You know that Halloween party where you blindfolded all us kids in the back of the stationwagon? And sped down the steepest hills?

“Did we dress as Oliver Twist that year?”

“Your Bavarian pancakes were my favorite. Noooo. Lentil soup with Würstchen!”

“Oh my God, your pastel pink jumpsuit! Pockets, zippers everywhere.”

“The mothers at die Deutsche Schule were scandalized!”

Mami’s eyes sparkle—I swear it.

I track down my copy of the essay she composed in 1964. She had traveled by Transcontinental Railway to Tokyo, she and my aunt. Two unaccompanied females!

I read it aloud to my mother in German.

The prose is immaculate. The imagery pops.

“Mami’s dream was to be journalist,” I explain to her caregiver Hillu.

My mother’s lips part. Close. I wonder what it is she wishes she could say?

“You skied like an angel,” I remind her. “Arms wide as wings.”

A Squaw Valley ski instructor once determined there was no hope for change. “That 1950s Swiss Alps style never leaves the bones.”

It is November 2021, and my father returns from his walk. Hillu joins him in the living room, long black coat in hand. She lifts my mother from the wooden chair. My mother goes limp in her arms. Hillu drapes her, fits her, buttons her.

Outside the dusk has fallen.

My mother wobbles. Steadies. We stand face to face.

This is the last time.

She reaches forward.

Palms turned outward, fingertips buckled like autumn leaves.

She runs the cool backs of her hands down my cheeks.

How smooth the skin of her knuckles.

She is finding me, finding me in time and space.

My eyes are wet.

Her eyes are wet.

She puckers her stiff and truculent lips.

She cranes her neck.

She kisses my cheeks, the left, the right, the left, the right.

Again.

Beneath my sternum, a howl gathers, condenses.

On the morning of January 30, 2025, my mother dies in San Francisco, and I cannot touch her. I cannot press myself against her face, I cannot twine my fingers in her hair. I cannot hold fast to her arm, I cannot lightly use my fingertips to check her pulse.

But I do get to see her, from my vantage point on an iPad, propped against the wall.

She, in a hospital bed, in the living room, flanked by my father and my brother.

She, thin as a sickle, mouth agape, breath rattling.

And I do get to speak to her. Someone—Hillu? My brother?—holds the iPad to her ear:

Oh Sweetie, oh Schatz, you are so loved, so brave, so cherished. Look, Micha is here, and Papi is here, and I am here, all of us are here, with you, together. You did so much for us, you worked so hard. Your life was worthy, your life was beautiful. You can let go … now.

To clarify, I do not talk to her, I shout. For ten minutes, I shout like some unhinged Baptist preacher, entirely unaware that the volume on the iPad is dialed up to 11.

I do hope she got a kick out of that.

I do hope she registered that her three closest kin enveloped her in the end—one of them alarmingly loud.

And I do hope that she held, cupped within, those other times, too—when she and I spoke softly, oceans apart.

That one particular FaceTime, in the waning years, when fearing I had tired her, I asked, “Do you want me to call Papi back into the room?”

And she replied, “A Na Na Inuh”

I searched her eyes for the message, her forehead for a clue.

“A Na Na Inuh,” she insisted.

“Another minute?”

She brightened.

“Another minute!”

“Oh, Mami, we can sit here for as many another minutes as you wish.”

And in that stillness, we meet each other—pixelated, hampered, humbled, blurred.

Progressive supranuclear palsy - Wikipedia

Progressive supranuclear palsy - Wikipedia

[tangerinebeak]

It is rare now

that my mother can give shape to a word

I understand,

remember a date my father forgot,

appear upright on my screen,

polka-dot scarf tied smartly at the neck.

It is fleeting now

that she can fix her gaze on me,

lift her hand where it needs

to be.

She, the sharp edge onto which

I always stumbled,

she, the sandpaper that chafed my dreams,

a battle, that woman,

a vision.

every day illness steals a detail,

every day

it smudges focus.

I watch from across an ocean.

she grows softer, smaller, lost-er.

she —

no.

I am not ready.

[tangerinebeak]

Fear

Fear has been with me, always. He is my silhouette against the glass. The imprint of my body on this unmade bed. My earliest memory.

When I was four, fear packed a red checkered suitcase and slid it under my bunk—one set of clothes for me, one for my rag doll Gretel—just in case our flat caught fire.

Later it was a baseball bat, because what about the Night Stalker?

Also, the bandits! In the blackest pitch of night, they came creaking up our thirty-nine steps, they slid along our walls, they breathed into my bed, checking for children, checking for life.

They never got me. Fear had wormed me deep into the comforter and molded its edge into a single, well-placed air hole. He held me motionless, undetectable, for hours.

Fear had no antidote for Ronald Reagan or pending nuclear annihilation. My parents stuck a bright yellow ATOMKRAFT? NEIN DANKE on our front door. I was not stupid. Whoever was gonna push the button was not walking the streets of San Francisco, admiring stickers. In German.

Fear taught me something better: that a book is the one safe place. He took me to the library. I checked out eight at a time, I read three on any given afternoon.

Except fear could be a jerk.

Each dive off the pier turned to a feet-first splash.

Each back walkover on the high beam, each front handspring on the vault: stalled, broken, blocked.

In high school, I lost my voice box when I stood beside a boy. In college, every paper assigned spelled hyperventilation.

I could no longer even open textbooks.

I was “honorably discharged” for a year or two. I took a job filing dental charts. A… B… C…

Still, what can I say?

Fear tried so hard to help. Even before I knew the alphabet.

Home was a tarpit. Home was a game of darts.

Fear believed in logic. It could only be my fault.

He told me: Stay alert, tiptoe. Duck and second-guess.

I drew tiny, perfect pictures. I held my fork and knife just so.

I would be good. I would make myself enough.

I starved until my eye sockets emptied. I wore only the clothes my mother chose. I dined with her friends instead of my own.

I held my tongue. In fear.

Straight A’s. In fear.

Every day. In fear.

My tummy ached for no good reason. I shed my hair in clumps.

I would not be selfish. I would not be a girl no man could love.

I strained for flawless German.

Yet fear doesn’t save a child from a love that ruptures. I did not know it. I clasped his hand for decades.

Now there are those who speak ill of him.

They call him “stressors.” During childhood, those years when our neuro-endocrine systems are still vulnerable, developing.

They say, childhood stressors can trigger neural pathways, unleash hormonal and inflammatory landslides that dirty our cells for decades.

They say, an over-active immune response to infection follows, but long after the rejiggering of our circuitry.

Not to discard all the other theories thrown my way: genetic predisposition, too many Diet Dr. Peppers, a surgery gone south.

And yet. I am a person with an over-active immune response. And no one can tell me why.

So I am asking, I want to know, is it fear that I should blame? When I kissed a boy, I don’t know which boy, all the same boy, the boy who would not but rupture me. His lips were a hunger, his lips were keen, I thought they’d hold me safe. I kissed that boy. That any-boy, and he held a virus in his teeth—you have that virus too, almost all the persons on this planet do. You have it, and it’s quiet. In me it made a scene. Why? I want to know. Whence the neural pathways that told my body strike, swing that bat, swing too hard, and my body did obey—I swung and crumpled, swung and crumpled—crumpled, crumpled, swung—until twenty years later I’m nothing but a creased and wadded bedsheet of the woman I used to be?

So I am asking, I am saying!

Is fear itself my apartment fire? My Richard Ramirez?

My bandits?

Creaking along the walls.

Breathing into my bunk.

Hunting for a life to steal.

[tangerinebeak]

The thick silver band on my pointer finger can tell you my heart’s unsteady beat, the serrated knife that is my sleep, the calories burned, the chill of my flesh from dusk till dawn. The thick silver band can track the cogs and wheels that jam and jerk inside a body that began breaking some two decades past. The thick silver band can measure everything!—everything except how loud I laugh and how much I talk (so, so much!) and how soft my heart, or stone-cold, depending on what you say to me. The thick silver band doesn’t detect how utterly the neon greens of June awe me, desert child that I am, in this land of numinous rains. Or how joyful beyond logic a summer dress can render me. Or how many days, weeks, years I lay in dark and silence, too sick even to move, teasing memory’s every detail to the surface, so that the other me, the first me—the writer, the athlete, the globetrotter, the lover—might never go missing, might always be my own. The thick silver band cannot compute how the beveled blade of grief at the enormity of life’s losses coexists with the sugar sweet balm of the humblest victories—the deadheading of a petunia, a walk to the end of the block, the shooting of a single photo in which a thick silver band hugs a pointer finger that’s resting on an eyelet dress amidst Berlin’s summer greens while a reticent rescue cat lounges on a deck chair unseen.

© June 2021

[tangerinebeak]

June Twenty Twenty

When the pandemic hit, the Italians on the floor above were the first to offer their help with groceries. Not the Germans, not the Croatians, not the Venezuelans. The Italians alone grasped the calamity that might befall us, the risk an outdoor venture now posed. Their cat, Galileo, of course, did not give a damn. Their cat, Galileo, in fact, was thrilled at the sequence of unhappy events because to keep the air circulating in my flat, and thereby try in vain to thwart infection when my masked caregiver did duty, I had taken to throwing open all my windows—an inadvertent fulfillment of the tomcat’s greatest wish: All it took was a hop from the courtyard where he prowled, into my bedroom where I lay, then a belly-crawl past my big white bed, a pounce onto the purple settee and out the living room window into the cool, quiet garden, where he’d find a spot beneath the bush and chill for hours. We’re so sorry! said the Italians when they realized—for Galileo’s presence was verboten by the neighbor with whom I shared the plot. No trouble, I assured them, not admitting how I relished that flash of orange fur, the invisibility cloak he feigned, my complicity in his daily act of trespass, his daily breath of green. This small gift that I, forever on the receiving end of charity, could offer another living being.

[tangerinebeak]

Party Girl

Christmas Eve, the holy night, the night that matters most in Germany, and for the first time in nine years, I have plans. I want to make this work. Two vitamin B shots, an extra dose of Klonopin, a detox bath, a liter of sea-salt water—and I‘ve managed to don a party dress with polka dot tights and paint my face in make-up long since crusty with age.

Across the hall, the neighbor greets me so warm and giddy I cannot but meet her mood. “You dressed up!” she says, knowing what this means. Her blended family smiles, shakes hands, details their positions in the genetic puzzle. In the kitchen stands the tree, awaiting its glory. It is for this, most of all, that I have come. My neighbor decked it that very day, as tradition demands. Now she ushers the human jigsaw pieces into the living room, and she, her grown son, and I light each red candle, from tree’s crest to base. Just like back home. Just like it used to be, my brother and me. Before we both vanished. I am trying not to cry. “What is with these matches?” “Use the lighter.” “There’s one more in the back.” “Are you tall enough for that?” “Got it.”

My neighbor’s father, her ex, his sister, his teen, and the grown son’s girlfriend crowd into the kitchen. It‘s never not ephemeral, that first moment. Always it catches the breath. Tiny flames leaping into the night. Branches and baubles, a nutcracker suite of light and shadow. Tonight there’s something new to me: “Wonder candles,” my neighbor calls the hanging rods. Quickly she and her son strike a match to each. Gold sparks fly, wild and brief. And we sing! “O Tannenbaum,” every verse, and “Stille Nacht.” Of course I know the words—I was raised on this. I trade smiles with my neighbor. I might be the American every other day in Berlin, but on Christmas Eve, I am German-born.

Gifts lie scattered beneath the tree, the work of the Christkind naturally. Santa what? Who needs a chimney? Long ago I gave the Christkind wings. How else, alight in our third-floor San Francisco flat, how else grace us with soft cotton PJs and Playmobil pirate ships all the way from Munich? Tonight I expect nothing. After so many years stranded in a white Ikea bed, simply to watch the hubbub seems a marvel. Yet the ex, of all people, has born me in mind: “Für Dich” reads the card. I tug at the ribbon. Whisky tumblers, which I mistake for water glasses, the only liquid I can drink. He is perplexed, I am delighted. A crystal tumbler holds Gerolsteiner just as beautifully as it does Jack Daniel’s.

The teen unwraps the last of her loot. Nail polish. Scrunchies. She is too shy to engage. My neighbor’s father thumbs through a bright and shiny Becoming. I can’t read whole books, but I want to know the shape of Obama’s prose. Straightforward, without flourish. This seems fitting. The son’s girlfriend passes me her new purse. I stroke the suede. I ask if she has heels to match. I tell her about Zebra, the best leather-repair store in all of Berlin. Funny. As if any of that’s a life I still live. Sometimes I make believe. I point to myself in my Anthropologie frock and teal Frye boots and say to my neighbor, “This is the real Lilan.” And we both pretend it’s not the Ghost of Christmas Past dropping by.

The goose is browning in the oven. The girlfriend tackles a pan of carrots. The others wander haphazardly into the living room. Shivers course up and down my arms. I can feel my blood pooling too low. My brain is erasing words. I have a thought of how I ought to bid adieu to each and every guest. Then I have a better thought. “If I just slip out now...,” I tell my neighbor. “Of course,” she says. “Will you tell everyone how glad I was to meet them?” “Yes, yes. And you’re welcome to come back later.” Already my larynx is inflamed. “Thank you,” I say. “Realistically, I won’t.” Because there are times I refuse to play pretend. She hefts the box of whiskey glasses, hooks her arm in mine, and walks me to my door.

Inside I tear off the boots with the heels-too-high, and everything—the joy, the beauty, all that is sacred, and the loss, the loss, the loss—comes tumbling out in a howl. I rush to my bed. I am a wad of red lace. I am the grief. I am the exhaustion. I am the gratitude.

It is a rare gift, an extraordinary gift, to be invited without pressure to attend, and to attend without pressure to stay. It is a kind of Christmas I have never before been given, and in a location that made it possible to say yes. Or no. As needed.

I do not peel off my stockings. I do not wash the mascara from my eyes. I lie in my broken party body and sob till the sobbing finds its end. Across the hall, the ex’s sister plays recorder. It’s “Stille Nacht,” every fourth note off-key.

[tangerinebeak]

Hope the Taste of Taffy

Monday my caregiver asked for a raise. Because rent. This would be fine if she didn’t also insist that I keep the winter coat I had ordered online. It was the pink of saltwater taffy. “It’s fantastic,” she crooned. She stood me in front of the mirror: “Look.” I turned away. I had already forced myself to fall out of love with it. “I leave the house only three times in winter!” I protested. Sylwia was nonchalant—"This year you must leave twenty"—because sometimes the impossible calls for deadpan. I rifled through my few old coats to demonstrate their abundance. She fingered a forest-green Gortex. It was oily with age. “Why is this even in your closet?” She had the look of a woman who has smelled sardines. I laughed. I did not say, that parka is my history. I biked through El Niño. I chased down New York. I slept in the Mojave. I said, “Um. It’s waterproof?” And I stretched out my arms that she might unsheath me of the dreamy car-coat pink. “Verrry nice,” she cooed, “this online store.” Temptation on the tongue. “Sylwia!” I said. “Do you want those two extra Euros or what?” She folded the coat into its box, sleeves pillowing over the rim. I did not say, I buy pretty things that I cannot keep only to return them because every day is a hole that needs filling, this illness is my echo. Together we closed the lid.

[tangerinebeak]

Every day different. Banality. Specters. Howls of inconsolable. Then daffodils! Fluffernutter! Cyan! We the wilted ones, living tethered lives.

[tangerinebeak]

He Was Breathing Through the Keyhole

He was knocking his brass-knuckled knock. “Lilan,” he called. “Yoo-hoo!” I ignored him. When I went out, I saw his footprint on the welcome mat.

He must have lost patience. As men so often do. Yesterday he busted down the door. A single well-aimed kick.

We waltzed a round in the living room, me and Mister Myalgic E.

Now I lie flat.

Years ago, I invited him in.

Years ago, I thought: A man’s touch, mere titillation. I did not understand: A single well-aimed kiss, treachery.

Years ago, my heart whole, unjaded. This body still my own.

Now I see. He will come. He will go. He will take you. He will break you.

There is no fighting. © 2008

[tangerinebeak]

Real, live, recumbent me, reciting my one-minute ditty for #BedFest, virtual festival of song, imagery and poetry about life with Myalgic E.

[tangerinebeak]

Death Is a Shadow Puppet

Death is a shadow puppet, lilting at my bedside. Sh-sh-sh go paper knees.

He jitterbugs the length of me. I lean in close.

The prized parka I will to Lola, the charcoal nude, my cousin in Sonoma.

Shiri gets the red settee. My caregiver needs—

I should make a list. Would Post-Its be macabre?

Coal-black shadow scales the walls, falls from every angle.

The cat I love. The used-to-be’s. This illness ever after.

I cannot find my face, my bones. Death dances a Flamenco.

Mornings I wake. I’m still here. My skin the shudder of ash.

[tangerinebeak]

Two years lapsed between the start and finish of this illo. Such is M.E.

[tangerinebeak]

The Day After

The DHL Express guy swung by this afternoon. I like him. He’s swarthy with a happy grin. German, of Turkish origin. He gave me his bright hello. But I was coming off my election all-nighter, pale as a button mushroom and shrunken in my fuzzy robe. “Do I need to sign?” I mumbled. He handed me the stylus. I couldn’t manage even the first loop of my name. He said, “I think you need to tilt it.” I rubbed my eyes, I reoriented the stylus—wanting, needing, to connect the dots for him, between pen and politics. “Trump ist Präsident.” I said it off-hand, because of course he’d know. His eyes tore wide. “Nein!” I reared up. “You… you didn’t know?” “NEIN!” And everything fell. His chin, his shoulders. A desert swept the plains of his face. He turned from me, a different man. “I’m so sorry…. To give you such news!” But he was out the door, into the gray. I stood alone, package in my arms. There was no consolation.

[tangerinebeak]

Closer and Closer to the Core

I never thought I’d lose my words. Now they hang like half-chewed cherries from my lips. Stones and flesh.

“Whereitwhereit went,” I say.

I claw for sentences that will not come. Half-formed thoughts that used to slip out smooth and fully formed twist and snap before they reach the air.

My caregiver Barnaby learns to read the blips.

“Check the white whisker basket. The whiii—?”

“Got it,” he says. 

Pinned in the dark, I chase down adages, synonyms, clichés. I just can’t remember anymore how we say what we say.

“You sure did tackle the belly of the whale!” 

I dream of a bird, caught in the left lobe of a friend’s brain. Its wings gleam turquoise, silver tipped. “But can they get it out?” I ask. She shrugs, unfazed.

I wake, and I know that bird. It once chirruped and rustled in its cage. “Peacock… peacock… no. Canary? Peacock… pppp… PARAKEET!”

The next day I forget all over again. “Peacock… pea… Dammit.”

I scramble as I write this post. I am feverish. My neck sweats. 

A social worker visits, keen as nails. For an hour, she hammers. I stumble, defending myself. Words refuse reach. Syllables drop, flip-flop. I am in tears. “I was 38-years-old,” I say. “I thought I would get well. I thought I had a future.”

When she leaves, she takes with her my voice.

Every day, Sylwia comes. Or Marzena. Or Barnaby… I check-mark their list of tasks in advance so I need say nearly nothing. Still, sometimes I have to ask: What did you feed Leopold? Please bring me a bottle of water. Throw this away… or that.  

Every day I measure the cost. If I ask for the bottle of water, my larynx burns all hours. I am screaming silence. If I rise and get it myself, shivers rush my limbs. I buckle. There is no best direction.

Seasons fall away. My voice rises, slowly. Not the same. Never the same.

I keep thinking of my Grand-mère, at 90, 95, 100, her bookbinder’s fingers, which had once creased pages to perfection, fumbling now, failing her, reduced over time to no more than tearing thin strips of radiant Japanese paper that her caregivers then glued on cards.

They were so beautiful those cards. How she hated them. 

Leopold mewls. “Shall I open the door?” I ask, and I unlatch the window.

He bounds across the sill.

I did not know, so many years ago, what it meant to watch the pieces of yourself get shaved away, the so-you-you-always-took-them-for-granted pieces, the closer-and-closer-to-the-core pieces.

The loss is immeasurable.

And I am afraid.

[tangerinebeak]

On a Late Afternoon in June

June sweeps in, and she’s a beauty. I want to cup her cheekbones, I want to know her close. I want to touch her blue sky skin.

I have not been outdoors since February. 

I have been pushing myself, cloistered and nocturnal, for months. I have read a book. I have read it twice. I have kept a journal. I have watched TV! Ellen, Graham Norton, the stuff I could find for free. Banal, I don’t care. Funny! I have launched a blog, I have written five posts, I have drawn little drawings, I have cut out each. Precision scissoring. With my cousin I have collaborated, I have edited in translation, I have PR’d her article all over the Web. 

I have done everything I am not supposed to do. Everything I’d relinquished the past four years.

The sun reaches long and low across our garden wall. I unfold a plaid blanket in a triangle of light. Weeds and wild grasses bend soft beneath me. An ant trails across my ankles.

I wear my Bose 15 C noise cancelling headphones. The construction site beside us works late hours. A snarl of engines, the clank of steel girders, come to me muted. I wear my Bose 15 C noise cancelling headphones, and I pretend that this is enough. I forget what I had remembered every afternoon the summer past.

My eye mask is indoors.

It should have destroyed me months ago: the everything I’ve done that I am not supposed to do. But it keeps not. And so I keep on. My brain is snap-crackle-popping, my body all edges. It’s a vitamin B complex that does this. I cannot rest as I must, I cannot meditate either. The current is too fierce, the hunger, after so many years’ abstinence, for a mind that gets to churn again, fiercer still.

Of course I am unwell. Brittle and chilled. Feverish. Yet, the valleys I slide into—between all the doing—are shallow, their slopes an easy climb. And I am brazen.

Now June curls up like a cat, lays her weight upon my eyelids. They haven’t felt this warmth for years. I want it never to end. Hot tears roll into my ears. I think: I shall write a post about grace. I shall write a post about the grace of the sun on my eyelids on a late afternoon in June.

The next morning, my eyes catch flame. For weeks they blaze. I cannot stay the pain.

Something is terribly wrong. 

Oh, but the Germans dance toward glory! I dare to watch. Götze’s left foot slices the sky. My body quakes, my body falters. And then, everything breaks. 

I do not write about grace.

[tangerinebeak]

And then, sometimes, I feel connected to everything.