Break Poetry Open Contest Winner

Thank you to all the poets who shared their work this National Poetry Month, sending their words to us, helping us to Break Poetry Open. I was drawn again & again to the voices with messages insistent & urgent, those words on the page that demanded to be read aloud. I paced my living room & kitchen, reading your words — caught in the cul-de-sacs of prose forms, the gullies of line endings. In particular, the poems that drew me back to them were the ones that challenged me. Your voices and forms were both brutally inviting and occasionally offered a stiff arm, keeping me at bay; it was this balance of vulnerability & withholding that kept me reading, re-reading, and wanting more.

—C. Kubasta, Editor, BMP Celebrates National Poetry Month 2019

Winner

“what do i know about consent anyway” by Hannah Soyer

Short List

“A composing book, 1973” by Daisy Bassen

“FOR COLORED GURLS WHO HAVE CONSIDERED SUICIDE WHEN THE TWIST OUT WAS NOT ENUFF” by Levi Cain

“[mispronunciation]” by Uma Menon

Editors’ Picks

Week Five

“To: that nought in da jcemestry” by Penelope Alegria

“To Cry Out” by Cassandra Hsiao

“This Cosmic Dance” by Natasha McLachlan

what do i know about consent anyway

Contest Winner

Hannah Soyer

Hannah Soyer is a disabled creative writer and artist interested in perceptions and representations of what we consider ‘other.’ She is the creator of the This Body is Worthy project, which aims to celebrate bodies outside of mainstream societal ideals, and the founder of Freedom Words, a program to design and implement creative writing workshops specifically for students with disabilities. She has been published in Cosmopolitan, InkLit magazine, Mikrokosmos Journal, Hot Metal Bridge, Rooted in Rights, and her most recent piece, ‘Displacement,’ has been nominated for a Pushcart Prize.

thisbodyisworthy.com

Twitter/Instagram: @soyernotsawyer

A composing book, 1973

Short-List Selection

Daisy Bassen

The book is old. The book has a yellow cover. The book was given to me by my father. My father was a teacher.

The book is simple. The book is deceptive. Deceit is valuable. Deceit is proscribed.

The sentences are short. The sentences make a song. The sentences want involution. A clause has claws.

The claws are yellow. The claws are old. The sentences are about bombs. The sentences are about immolation.

The book belonged to a girl. The girl was a student. She learned about bombs. The yellow of immolation.

The sentences are about runaways. She ran away. The girl. Clawed.

Daisy Bassen is a practicing physician and poet. She graduated from Princeton University’s Creative Writing Program and completed her medical training at The University of Rochester and Brown. Her work has been published in Oberon, The Delmarva Review, The Sow’s Ear, and Tuck Magazine as well as multiple other journals. She was a semi-finalist in the 2016 Vassar Miller Prize in Poetry, a finalist in the 2018 Adelaide Literary Prize, a recent winner of the So to Speak 2019 Poetry Contest and was doubly nominated for a 2019 Pushcart Prize. She lives in Rhode Island with her family.

FOR COLORED GIRLS WHO HAVE CONSIDERED SUICIDE WHEN THE TWIST OUT WAS NOT ENUFF

Short-List Selection

Levi Cain

swear on my mama no—swear on something more simple and sacred. swear on my brother’s future mixtape, swear on pig fat in collard greens and freshly whipped shea butter, arroz con what the fuck ever—that the cracked cushion chair of my hairdresser’s closet is in fact a cathedral, packets of yaki and remy dotted with the same angels, skin the color of good brandy. the nollywood movies blaring on the thrifted television is the preacher. there is one constant truth— the half-room in waltham is a tabernacle for second generation girls who never learned how to cornrow.

a blackgurl’s bond with a hairdresser is tighter than the binding of isaac, requires more faith than you ever know how to give after years of lye being applied to your scalp, after years of being teased by whitegirls who crow that your hair looks like brillo pads that they wouldn’t let their housekeepers scour the sink with. the same whitegirls who now quiz you on coconut oil and ask you to anoint them with the wisdom of deep conditioning.

i and every other blackgurl who grew up in the suburbs are haunted by visions of hot combs and strangers putting their hands in our hair, pulling so sharply we swear we hear the echo of a whip crack.

but those ghosts have no place here, in this space that has only space enough for you, your hairdresser, and maybe her friend from haiti who you do not know the name of but who twists braids so gently it is as if she wants to be your mother.

this is an act of love, but all gods are not filled with goodness and so neither is the woman who stands with jojoba in her right hand, 84 inches of kankelon in her left, who asks why you never seem to have a boyfriend, who told you she would rather die than break bread with faggots but passes you plantains as communion, presses your forehead to her chest as madonna, calls you daughter, welcomes you with open arms to a rented room in a part of a town that would make a principal’s lip curl —this blackgurl bethlehem, this satin covered resting place, this plane of being where you are you are blackgurl, are celebration, are miracle, are nothing but holiest of holies.

Levi Cain is a queer writer from the Greater Boston Area who was born in California and raised in Connecticut. Further examples of their work can be found in Lunch Ticket, Red Queen Literary Magazine, and other publications.

[mispronunciations]

Short-List Selection

Uma Menon

i try to pull out a chameleon’s tongue from inside my throat, change the color, change it all before another            [mispronunciation] leaves my colorless mouth

instead i find my mother tongue stuck inside my throat, a lump forgotten only by me & i find a desire, tucked away, to strangle her and choke myself before another            [mispronunciation] escapes without explanation

i am afraid that i have stained the english that i speak that it yearns to be bleached in cold sand

i watch my mother chug down womanhood, let it slide through the grip of her mother tongue, into the stomach of America              [& her mispronunciations]

Uma Menon is a fifteen-year-old student and writer from Winter Park, Florida. Her writing has appeared or is forthcoming in the Huffington Post, The Rumpus, and National Poetry Quarterly, Sahitya Akademi’s Indian Literature, and the Cincinnati Review, among others. Her first chapbook was published in 2019 (Zoetic Press); she also received the 2019 Lee Bennett Hopkins Award in Poetry.

To: that noght in da jcemetsry

Contest Editors’ Pick

Penelope Alegria

Th city light s r beutiful 2night. Sky twinkles starligt on sidwalks with cracks that almost shape like ur sillhouette in twinkling moondust. Clay polish tatters blu on ashes of cigar wrappers flickering burnt blac n im thinkn of the time u rolled roun in somebody else’s ashes in that gravyard next to the church with the clouds rdy to snow upside down crosses.

Did u kn o th grass smells lik tequila n th boys breaths smells like lilac flickering burn t blqck sparks n my legs feel like pillow n l8ly it dpens’t feel right wrapping myself up in white bedsheets bc they dont feel wuite as electric as ur fingertips n m drunk

Im drunk im dunk m drnk n i want u nex to me w legs like pillows n breath like lilac burnt black n u rollin around in someboyd else’s ashes n i dk y u wouldnt want that eithr

Penelope Alegria has participated in Young Chicago Authors’ artistic apprenticeship, Louder Than a Bomb Squad. Her work has been featured or is forthcoming in La Nueva Semana Newspaper and El Beisman. Penelope was among the top 12 poets in Chicago as a Louder Than a Bomb 2018 Indy Finalist and was awarded the Literary Award by Julian Randall. She has performed spoken word at The Metro, University of Chicago, and elsewhere.

To Cry Out

Contest Editors’ Pick

Cassandra Hsiao

yellow: the cold echo of collapse muddled muddied house of decay return to the ground that bore me grow betrayal roots below mold my fingertips bleed flag i no longer show pale yellow: crayoned sun shine shield i risk changing colors if i don’t yellow: aroma that does not lie trapped in tin pots roasted crisp red brown duck i can taste home cannot find home sell home know home remember touch of yellow: lazy tongue remarks sting firecracker never cool enough to swallow yellow: taste morning hours sunrise son rise sweet victory to open shop open bells jingle lucky cat licks its paws yellow: eyes glass over cat looks white yellow: light

Cassandra Hsiao is a rising junior at Yale University, majoring in Theater Studies and Ethnicity, Race & Migration. Her poetry, fiction, and memoirs have been recognized by Rambutan Literary, Animal, Claremont Review, Jet Fuel Review, and National YoungArts Foundation. Her plays have been selected as finalists for national playwriting competitions held by The Blank Theatre, Writopia Labs, Princeton University, Durango Arts Center, California Playwrights Project, and YouthPLAYS. Her work is currently being produced in theaters across the nation. She has also won a Gracie Award for her entertainment journalism and was recognized as a Voices fellow for the Asian American Journalists Association (AAJA).

Instagram/Twitter: @cassandrahsiao

Facebook: https://www.facebook.com/LoveCassandraHsiao/

This Cosmic Dance

Contest Editors’ Pick

Natasha McLachlan

Natasha McLachlan is a poet currently living in Southern California. After losing her speech in 2018 due to unforeseen circumstances, she fell in love with reading all over again, as it helped her cultivate self-care–this, she hopes, will be a cure for others in a hectic and frantic lifestyle. She was a first-generation college student, graduating from California College of the Arts with a bachelor’s degree in Writing and Literature. As a minority, she takes pride in breaking the barriers and stigma around individuals of color by simply being herself. When she is not writing, she is spending time with her family or bonding with her 9 siblings, whom she considers her best friends. Her inspiration comes from the moons and stars around her, nature being her greatest muse.

Robin Gow, Jessica Nguyen, Danny McLaren, and Uma Menon

We are delighted to present this week’s selections from the Brain Mill Press Poetry Month Contest, Break Poetry Open, by talented poets Robin Gow, Jessica Nguyen, Danny McLaren, and Uma Menon.

We hope you’ll enjoy these editors’ picks as much as we did.

i had a dream they took out my uterus & handed it to me.

Robin Gow

my uterus was an ornate vase & i asked, “what am i supposed to do with this?” the doctor shrugged he was in a suit & tie & had lavender gloves he suggested i use it to collect something. i stuck my hand in deep to see if there was already anything in there, found a ring i lost maybe four years ago & i wondered how it got there. silver claddagh waiting scraping up against the glass lining of the vase. it had something to do with hope, i think a uterus does even if you take it out & discover it’s a shoe box or an urn or a vase. i tried other items, starting with buttons, snipping them off all my clothes so that i would have more. clear buttons, black buttons, brown buttons, red buttons, all of them inside the vase, i thought they might transform, i thought that might be the point of the strange object but nothing happened. i slept holding the vase & imagining what it was like inside me what kind of objects it hungered for. i talked to it, i told the vase that i was sorry this was how everything had to happen. i bought flowers after flowers to let sprout from the vase’s mouth: lilies, carnations, roses & i’d keep asking the uterus, “are you happy?” but the vase wouldn’t respond. emptying out the greenish stem-water left over from the flowers i stuck my hand in again only this time i felt an ache in my chest as i did, a kind of phantom connection, a hand under skin. i wept, it was something about hope for something; a hand searching under skin for lost objects, the ring like a kind of opening for beetles or other insects to crawl through. i was scared it might always be like this if i kept the thing around. i had to break it. no, not in the driveway or the street, a push from the counter in the kitchen where all glasses & plates will eventually shatter. the pieces on the floor like teeth of an unknown monster. i apologized to the uterus as i cleaned up its pieces. i took a bowl from the cupboard & began filling it with buttons out of habit or maybe some kind of hope. from the buttons grew the stems of flowers, only the stems.

Robin Gow’s poetry has recently been published in POETRY, The Gateway Review, and tilde. He is a graduate student at Adelphi University pursing an MFA in Creative Writing. He is the Editor at Large for Village of Crickets, Social Media Coordinator for Oyster River Pages and interns for Porkbelly Press. He is an out and proud bisexual transgender man passionate about LGBT issues. He loves poetry that lilts in and out of reality, and his queerness is also the central axis of his work.

perks of a half-deaf wallflower

jessica nguyen

one. it’s so much easier to sleep lying in bed, on my “good ear” – whether it’s thunderstorms or my partner’s snoring, I am able to slip past silently through the night no baby can wake this baby up. everyone envies my mornings since they see no traces of dark circles under my eyes they’d ask, “what’s your secret?” who knew that my disability could be a celebrity-level beauty hack?

two. the drill fire alarm comes in—oh wait, that’s not a perk.

two. I can pretend to not hear you and use my deafness as a legitimate excuse. – this especially works when I am not particularly fond of you. this also works when I am not paying attention to something that I should’ve been paying attention to “oh, sorry. what’s that? I couldn’t quite hear you the first time. can you repeat what you said? thanks.” (smirks) I swear it’s the truth sometimes. . three. during trials and interviews, “we can’t hire you because you—” oops, that’s not a perk either. . three. I got extra time on my ACT tests. didn’t think that having my time limit doubled would help me on this kind of standardized testing, since only one of the four of the subjects required listening to begin with… but I did get a small private room to myself with no pencil scratching and people breathing . four. I got the same ACT score as my last one. and I wasn’t even given the extra time last— wow, I need to stop. what is the definition of self-actualization again? . four. I am everybody’s right hand person. the ones who’ve passed my friendship test re the ones who remembered to walk on my left. you can tell who the strangers are – they are the ones who I dance tango with as I quickly sashay to get to their right side. . five. walking into every classroom I wore an fm unit like a prop, which consisted of a hearing aid for me and a microphone for the teacher to speak into, which means having to blow my cover as I approach

now, I could expect the spotlight to be on me – yes, the star actor who deserved an oscar for passing as a full hearing person, coming up on stage to deliver her speech: “I’d like to thank lip-reading and body language – I wouldn’t have been able to get to where I am today without them.”

all confused eyes would be on me, sometimes awkward silence, but mostly attention to the quiet girl sitting in the front because isn’t that what being half-deaf means? getting all the special attention?

six. I can find my teachers easily when I need them. it’s great because if the teacher rushes out of the classroom, I always know where they go.

one time, the bell rang and it was the quickest I’ve seen a teacher leaving the room (I can understand his urge, though) the problem was that he was wearing my microphone so I had to chase him down. and of course, I thought it’d be cool to spy on what he was doing through my hearing aid. so, I did.

and what I first heard seconds in was the sound of of a stream, which lasted for…. a while. then, a toilet flushing.

Jessica Nguyen/Nguyễn Thị Mai Nhi is a world traveler, activist, and writer. Though having lived in the U.S. for most of her life, she hops from one country to the next in hopes of discovering pieces of home to fill her Asian American soul. Known to be a soft-spoken person in the real world, she often channels her feelings through her writing as she finds written words to be just as powerful as when they’re spoken. Jessica plans to publish her own chapbook, “softly, I speak” in the near future. To learn more about her current projects, please visit her website at byjessicanguyen.com or follow her @byjessicanguyen on social media.

Spark Joy

Danny McLaren

Do you ever wonder if your gender sparks joy? If it fits you like a glove, if you love the way the words sound in your mouth or leave your lips, How it feels to say ‘they’ with your own tongue And know better than anyone else how to say your own name?

Does your gender excite you? Does it hum in your veins, electric, ignited, Keep you up at night, tossing from panicked to delighted, thinking what if I’m a boy? or what if I’m nothing at all?

But ‘nothing’ seems scary. My gender isn’t scary. Sure, it’s loud, and it’s big, It takes up too many seats on the bus, makes the up-tight man on the left of me scoot over one.

But it’s dynamic, and powerful, and strong. It repels close-minded like a magnet, And pulls kind and ‘knowledgeable about feminist theory’ my way.

It’s ‘too many beers on a Saturday night’ euphoric, It spills across my clothes when I’m not careful, Or, on some days, when I try really hard to make it seen.

My gender beats in my chest when I run, or while I wrestle into my binder. Constricting my chest with freedom, just to look a little more me.

My gender kisses me goodnight, and greets me with the sunrise, And marks up my skin with ‘I love you.’

Do you ever wonder if your gender sparks joy? If you feel ‘just right’ with the words you choose to use To tell others who you are? Maybe you should Because it feels damn good.

Danny is a queer and non-binary writer who uses they/them pronouns. They are an undergraduate student studying Gender Studies, and beginning to dabble in queer, anti-racist, and anti-colonial theory. They have an interest in exploring themes related to equity, resistance, and intersectionality in their work, and often write about their gender, sexuality, and mental health through these lenses. They can be found on twitter at @dannymclrn.

shopping for a necklace

Uma Menon

Uma Menon is a fifteen-year-old student and writer from Winter Park, Florida. Her writing has appeared or is forthcoming in the Huffington Post, The Rumpus, and National Poetry Quarterly, Sahitya Akademi’s Indian Literature, and the Cincinnati Review, among others. Her first chapbook was published in 2019 (Zoetic Press); she also received the 2019 Lee Bennett Hopkins Award in Poetry.

For this year’s National Poetry Month, Brain Mill Press & Voices want to add to your #TBR pile, sing siren songs of unsung heroes, and signal boost living poets we should be reading more. By the end of the month, we hope you will have acquired 30+ new books of poetry and that they continue to multiply in the darkness of your library. Explore new voices & new forms — re-read some old favorites — play if you liked this poet, you’ll like… the old-fashioned way, algorithm-free — just poetry lovers talking to poetry lovers, as the Universe intended. Happy #NaPoMo2019 from Brain Mill Press.

Poems by Travis Chi Wing Lau from Rogue Agent

A poet’s work that deserves to be highlighted is Travis Chi Wing Lau. Travis represents the ultimate Rogue Agent poet. His work is tender, forthright, elegantly crafted. He dares to reveal himself with his words. I’ve included the three poems he’s published with Rogue Agent and also a new poem just for this profile.

Breathing Rites

Issue 13-14, Apr-May 2016

I think the struggle for a bearable life is the struggle for queers to have space to breathe.Having space to breathe, or being able to breathe freely … is an aspiration. –Sara Ahmed, The Promise of Happiness

Crescent lunge:a prayer on bendedknee, for seconds dobecome trials, as formrestricts function. Then,a twisting open of whatis otherwise closed, ofshallow breaths shrinkinginto shame. So he begsmy ability, to be victorious(mighty capacity,he demands): I amfullest here evenas I extend my sidevulnerably intobare space.Eupnea even in this hourof disorientation,even when there seems tobe no space to breathe.

Night Terror

Issue 23, Feb 2017

Mooring shudders // beneath the // uneven balls // of my feet, // those that // seek the // ground after // the freefall // between the // lightest of // hours (how // they grind // against //the creaking // hands). // I turn // to face // the long // gravity // of a bed: // where the // flashes pool, // where the // faces fan, // as the notches // become gothic // in between // the march of // charred lines // (for one // can only // dance madly // out of // Piranesi’s // prison).

Scoliosis, A Portrait

Issue 32, Nov 2017

Bold shape,that marrowedthing, thrummingwith some otherharmony,a bastion coiled:tighter,tightly.But formsmay reacha point ofbreaking,golden bowlsmore vulnerablebecause theybear the chanceof singing.Here,a balm forthe pressure,a kiss forthe risk,a laying onof hand:tendertending.

Doctor K.

The promise wasof movement:me to the slightestof motes, though I feelcomposed ofnothing but flickers,what can be bothan instance and an eternity.I let him layhis hands,(trained asthey are to coolness)and I amsure to make no wishes boundfor wells.He tries,and I permit him:however fruitless,body and endeavor.

Travis Chi Wing Lau recently completed his Ph.D. at the University of Pennsylvania Department of English and will be a postdoctoral teaching fellow at the University of Texas at Austin beginning in Fall 2018. His research interests include 18th- and 19th-century British literature, the history of medicine, and disability studies. His academic writing has been published in Journal of Homosexuality, Romantic Circles, Digital Defoe, and English Language Notes. His creative writing has appeared in Wordgathering, Assaracus, The New Engagement, The Deaf Poets Society, Up the Staircase Quarterly and QDA: A Queer Disability Anthology. [travisclau.com]

BMP Celebrates National Poetry Month

Maybe you have lines living in you. Maybe you’ve been walking around like the speaker in Maggie Smith’s “Good Bones”: “This place could be beautiful, / right? You could make this place beautiful.” Maybe you’ve been inspired by Isobel O’Hare’s erasures, and have an urge to address some things. Maybe you’ve woken up in the spiked night, with a line swimming out of the deep. Maybe you have a story to tell. Or, maybe you memorized Jericho Brown’s “Colosseum” and have been repeating to yourself: “I cannot locate the origin / Of slaughter, but I know / How my own feels, that I live with it / And sometimes use it / To get the living done . . .”

These poetic efforts have touched me in the last few months, in that strange trigonometry of language, chance, and seeking, that we readers and writers do. Brown’s lines resonated with me, brought me low, and offered something – if not quite comfort, then a kind of recognition.

Poetry Month Feature

Rogue Agent is a journal that is, at its core, about bodies. The journal started out as a very personal project for me. I am a person with multiple disabilities. This plays an important part in what I write and informs Rogue Agent as well. My first full-length book of poems, Suites for the Modern Dancer, is a braided narrative that features themes of blindness and mental illness. My chapbook Chance Operations is about chronic pain.

But I didn’t always write about disability or claim the identity of “person with a disability.” When I started my MFA, I was attracted to high-stakes poetry, poems that took risks and allowed themselves to be vulnerable. Thrown into the world of working poets, I became aware that such poetry was not approved of by everyone. Some professors, editors, and other writers thought that it was inappropriate or unnecessary. They labeled it confessional, and spoke the word with disgust. However, I took some disability studies courses and the purpose for my work, and what would ultimately be the mission of Rogue Agent, slowly coalesced. I was going to be bold and honest about who I was; I would write visceral poetry that moved the emotions and was grounded in the body.

When I graduated and started sending work out to journals, frankly I was scared. When I received a rejection, was it because of the quality of the poem or because of its content? I soon found journals like Breath & Shadow and Wordgathering—these venues focused solely on disability. My work was welcomed there. But I wanted my poems to be accepted not just in disability circles, but in the wider world of literary journals. In what aspect of the literary world did my poems fit?

At the same time this was happening, Trayvon Martin was shot and killed. Although the abuse of black people by police has been and continues to be ongoing, Martin’s story was the first time I really paid attention with my whole heart. I got angry, and I got thoughtful. I thought about the kind of privilege I had, and the kind of privilege I didn’t have. I thought about bodies and the way gender, race, sexuality, disability, religion, parenthood—and many more facets of identity— are experienced through the body. I wanted to push back against people in positions of political, economic, and cultural power who wanted to erase or “write over” marginalized bodies.

Eventually to put my thoughts into action I decided to start a journal that would take as its mission a stance of disagreement with those who argue that poems about the body are taboo, invalid, or no longer needed. I invited poets and artists to submit work that took risks with language and form, allowed vulnerability to be present on the page, and authentically portrayed their lives as they lived it. Whether a poem is straightforwardly narrative or surreally imagistic, I want to amplify this expression of the author’s lived experience.

Imagining another’s background and circumstances through engaging with their poetry and art can increase a reader’s empathy. By gathering different experiences together in each issue, Rogue Agent creates interesting and provocative intersections of identity, being, style, and form.

Rogue Agent is a relatively young journal (three years old) and we seem to be gaining in popularity. Bringing our poets’ and artists’ work to a wider audience is one way to send authentic experience into the societal landscape of marginalized stereotypes. A way to talk about problems. A way to imagine solutions instead of stalemates. A way for creativity and openness to fight the divisive forces of toxic masculinity and misuse of power. Editing Rogue Agent is something that is exciting but also humbling. RogueAgent isn’t me; it isn’t an editorial team. It’s the voices of the authors and artists that shape the journal, give it power and meaning. All 37 issues are available for you to read right now, (for free!) at rogueagentjournal.com.

Jill Khoury is interested in the intersection of poetry, visual art, representations of gender, and disability. She is a Western Pennsylvania Writing Project fellow and teaches workshops focusing on writing the body. She holds an MFA from The Ohio State University. Her poems have appeared or are forthcoming in numerous journals, including Copper Nickel, Bone Bouquet, Lunch Ticket, and diode. She has written two chapbooks—Borrowed Bodies(Pudding House, 2009) and Chance Operations (Paper Nautilus, 2016). Her debut full-length collection, Suites for the Modern Dancer, was released in 2016 from Sundress Publications. Find her on the web at jillkhoury.com.

BMP Celebrates National Poetry Month

Maybe you have lines living in you. Maybe you’ve been walking around like the speaker in Maggie Smith’s “Good Bones”: “This place could be beautiful, / right? You could make this place beautiful.” Maybe you’ve been inspired by Isobel O’Hare’s erasures, and have an urge to address some things. Maybe you’ve woken up in the spiked night, with a line swimming out of the deep. Maybe you have a story to tell. Or, maybe you memorized Jericho Brown’s “Colosseum” and have been repeating to yourself: “I cannot locate the origin / Of slaughter, but I know / How my own feels, that I live with it / And sometimes use it / To get the living done . . .”

These poetic efforts have touched me in the last few months, in that strange trigonometry of language, chance, and seeking, that we readers and writers do. Brown’s lines resonated with me, brought me low, and offered something – if not quite comfort, then a kind of recognition.

Meatcage

The sunlight seeps soft through the womblike redness of my closed eyelids as I ease into consciousness.

Can I actually feel the crackling dislocations from my elbows to my fingertips, or is it simply familiarity, the recognition that the slabs of meat at the ends of my arms must somehow still belong to me, even if I can’t control them right now? I blink languorously, eyelids plinking together. How can I be more tired waking up than I was before I fell asleep?

I say the names of the bones to myself in a chanted catechism as I will myself to sit up. Lunate, scaphoid, triquetral. My tongue tap dances along the backs of my teeth and I wriggle against the pillow without using my hands. Capitate, pisiform, hamate. Once steady, I interlace my fingers, stabilize my left hand with my right, then pull and twist simultaneously. The movement is rote memory. Lightning bolt bright explosions implode within my hand every single goddamn time. There is a machine-gun chatter of bone against bone and I don’t realize I’m grinding my jaw and holding my breath with the hurt until I have to unclench and inhale. The sound of re-location echoes in my room — all of Oakland must be able hear it — before I switch, bracing right hand against left this time. I pull, twist, and my nerves scream in protest as the blood flows back into my hand. Each pale finger bursts into bright crimson bloom, tributaries abruptly flooded with color and the feeling that inevitably follows. There is an electric tingle like brushing wet skin against a light socket as I pop my thumbs back into place, then encircle my wrists and watch my ulna and radius forcibly realign. My elbows follow suit obediently, eventually, and I am grateful they don’t require more coaxing.

There is an electric tingle like brushing wet skin against a light socket as I pop my thumbs back into place, then encircle my wrists and watch my ulna and radius forcibly realign.

Breathe.

Once my hands are back together, I plant them on the sheets and twist my torso. Each vertebrae jumps back into place, an answering cacophony to the call of my hands. It feels like stacking books on a shelf until their spines are carefully aligned with the edge.

Eventually, slowly, surely, I sit up fully. I slip my fingertips beneath my scapula and crunch my ribs back in place. I roll my head in tiny circles until my neck no longer creaks. My ankles pop like bubble wrap and if there weren’t two screws in my left foot, anchoring my toes in place, they might add rifle-shot cracks to the discordant symphony of my skeleton. I swing my legs over the edge of the bed and shuffle into my slippers.

I keep the pain pills in the second drawer on the left-hand side of the bathroom sink, through the bedroom door and down the hall on the right. If they sat on my bedside table, right there beside me, within easy reach (once my hands were realigned), I might never make it off the mattress. The rattle of round pills against child-proof plastic is sweet harmony, a chorus of angels whispering against the seashell curve of my ear. They fall into the palm of my hand, sweet manna from heaven, and dissolve bitterly, beautifully beneath my tongue.

One of my earliest memories is as a toddler in the hospital, and the razorblade burn as they snaked a catheter up into me to help empty my bladder.

The pain of that urinary tract infection looks like bright, white, focused light and the weight of my Mama holding me as I screamed. The hospital is not an uncommon setting for my childhood memories, because there are so many other surgeries: a broken collarbone, stitches striped up my forehead in a scar that makes me self-conscious as a teenager, eye surgery after being declared legally blind. Scars remain in the places where my memory has evaporated like pools of rubbing alcohol. I am too young to have so many injuries, and the doctors label my mother negligent while the nurses cluck their tongues when she brings me in yet again. She is not a reckless parent; I am simply sick and undiagnosed. I will remain that way for decades.

Scars remain in the places where my memory has evaporated like pools of rubbing alcohol.

I grow older, and the hospitals are replaced by memories of rooms full of fellow elementary school students lined up in neat rows as we stood, backs against the walls, to be tested for scoliosis. I knew that my bones were curved, sinuous and slippery, because the doctors had already told us. I welcomed the escape from the tedium of our regular classroom routine and thought little more of a test that told me nothing new. It didn’t hurt yet — not more than anything else I’d been through, anyways — so I didn’t have to worry.

I grow older still, and my middle school years are defined by the hissing suck of the refrigerator’s rubber seal as I slip the protective plastic case containing the glass vial of human growth hormone and its syringe inside the artificial chill. Sleepovers meant an inescapable conversation with someone’s mom to explain why I was bringing needles over to spend the night. Sometimes I would sneak into the bathroom to inject the drug into my stomach or my hips; sometimes my friends watched the process, rapt and only slightly disgusted. The endocrinologist asked me questions about my absent period that made me squirm. His queries made me compare myself to friends who had already begun puberty, as if the flat line of my chest and tiny stature weren’t already stark reminder of how far behind my body lagged. Eventually, I refused to see him again, missing out on adding inches to my stature as the hormonal help ended.

In high school, I arch my back against the hard metal of the chair attached to the desks, feeling the deep ache in the curve of my spine. Some days I’d skip homeroom and drive my emerald minivan across the bridge until I found an expansive parking lot where I could sleep in the backseat without being noticed. Cool breezes fluttered in from the cracked back windows but none of it made the hurt go away. When I talk to a doctor about feeling so low, I don’t mention the pain — no one has connected any of the points into a cohesive constellation yet. He points out the pin on my lapel, a round button proclaiming my love of The Cure, and asks me if I take a lot of MDMA, listening to a band like that. I laugh in his face and never come back.

When I talk to a doctor about feeling so low, I don’t mention the pain — no one has connected any of the points into a cohesive constellation yet.

In college, the shame of calling out of work yet again burns bright. I wonder if the heavy plastic trays of food I hoist onto my shoulders were the reason why my whole body sometimes protested so vehemently I couldn’t even get out of bed. I feverishly save my tips, cycling through every brand of mattress topper available, but none seem to help. I email my professors to tell them I am unable to move from my pillows, much less sit up straight behind the wheel of a car, which means there’s no way I can drive to campus for class. Sometimes I drag myself to the doctor and beg for any kind of answer. Instead, they recommend I see a chiropractor and write me a note that excuses me from class.

After college, as a bonafide adult, I revisit my childhood spent in the emergency room. One night, I check myself in after two weeks of hitching gasps on dislocated ribs. I beg the intake nurse to help me slide them back into place, long enough so I can take a deep breath. Breathing feels like sucking oxygen through a blocked straw. Instead, two nurses and a doctor corner me. They proffer pamphlets that explain the link between narcotics and addiction; they encourage me to get myself clean. I tell them I don’t want narcotics, but they’re convinced they have me figured out. On the way out, one finally touches me and exclaims in surprise when he feels my rib cage shift. I sob painfully in the car as I drive home.

The diagnoses that came first were the ones that are always applied to young humans with uteruses who complain of inexplicable pain.

My medical record fills with words like conversion disorder, and hysteria, and hypochondria. Someone as young as me shouldn’t — realistically couldn’t — possibly hurt this much. The doctors can’t see my pain, which means they can’t measure it, either; obviously it must not actually exist at all. A primary care doctor finally refers me to a neurologist so he can wash his hands clean of me, and this doctor grants me the gift of a word that seems to fit: hypermobility. He shrugs, tells me there’s nothing else he can do for me. He doesn’t realize the benediction he has offered in the form of a diagnosis.

Someone as young as me shouldn’t — realistically couldn’t — possibly hurt this much. The doctors can’t see my pain, which means they can’t measure it, either; obviously it must not actually exist at all.

The salt of my tears cut channels through the foundation I patted on my cheeks to cover up the deep, dark half-moons of exhaustion beneath my eyes. I frantically search for more information in my ear, scrolling with one subluxed finger through pages describing collagen disorders. I see myself reflected in the words, each sentence strung together like pearls I could drape around myself to describe the mystery of my hurt. It is like that perfect, tiny moment of ecstasy when a word you couldn’t think of for days finally pops into your head unbidden. My heartbeat rings out like a hammer against steel, my bones reinforced with the titanium resolution of an almost-answer. I am suddenly dogged enough to fight harder, brighter, bolder for that which I now know to be true about myself and about my body. I am not quite there, but I am close.

I see myself reflected in the words, each sentence strung together like pearls I could drape around myself to describe the mystery of my hurt.

I am twenty-six years old and sitting in the bright primary colors of the pediatric ward in a hospital basement with no reception when a young geneticist with olive skin approaches. He wears a crisp white coat and I am distracted by the flickering sparkle of a tiny diamond in his earlobe as he diagnoses me, finally and conclusively, with hypermobile Ehlers-Danlos Syndrome (hEDS), a collagen disorder that can cause severe implications across the entire body and every system therein. He gives me a reason for my UTIs as a toddler, my eye surgery, the broken bones and random joint dislocations, the pituitary growth hormone deficiency, the unrelenting pain.

Along with the diagnosis comes the reality of my existence, combined with a slew of co-morbidities: dysautonomia, Complex Regional Pain Syndrome, facet joint disease, endometriosis, fibroids, dysphagia. There is a fatal flaw in my DNA and no cure for any of it; there is barely medical recognition, much less functional literature approaching a fix. The hEDS comes with an inescapable promise of more surgeries, and unavoidable complications from those surgeries, too. My jaw dislocates and stays out for 16 weeks before I am wheeled into the cool brightness of an operating room. My big toe dislocates and is eventually forced back into place with two screws. We ablate my nerves with radiofrequencies to try and deaden the sensation of pain and inject lidocaine into my muscles to try and prevent their uncontrollable spasms.

There is a fatal flaw in my DNA and no cure for any of it; there is barely medical recognition, much less functional literature approaching a fix.

A golf-ball sized cyst encroaches onto my right ovary and a fibroid invades my fallopian tube. A surgeon removes my reproductive organs, accidentally perforating the thin and friable tissue of my damaged uterus during the procedure. Every time a surgeon operates on my body, I ask them to take pictures of the places inside me that are broken. I clutch the images of my snarled insides to my heart as if they were pages ripped from a holy book. After years of being told it was all in my head, concrete proof of my pain’s existence is precious and perfect and makes me cry.

I become someone who is hyper-aware of my existence as a human with a body in constant rebellion. My body may be myself, but it is not my own.

My diagnosis is new when a well-meaning, nondisabled friend tells me that I’m going to “think myself into a wheelchair” if I keep talking about eventually needing one, and I can’t stop imagining her face as I look my doctor in the eye and tell him I’m not leaving his office until he refers me to a specialist to be fitted for one.

I’ve been asking to see a specialist now for months, unable to visit art museums or see concerts without my hips and knees and ankles dislocating, or my eyes blurring with the grainy darkness of near-syncope. Even the stout wooden handle of my cane, adopted as near-permanent after foot surgery, cannot keep me upright. He tells me that he is concerned I will become “too reliant” on the wheelchair, but he finally stops arguing when he sees the resolute set of my jaw that day.

Six months later, I am gripping the handrims of my new wheelchair. My cheeks already hurt from the uncontrollable grin spread across my face, but I cannot stop smiling. Even in the small space of the specialist’s office, I zip from corner to corner and back again, learning to maneuver my body in its new vehicle. I gave up long distance running long ago, after finally accepting that my ankles would never stop dislocating with each slamming step on concrete or treadmill, but have craved the endorphin rush of a runner’s high ever since. The speed and sure agility of my wheelchair provide the surety of that high.

Even in the small space of the specialist’s office, I zip from corner to corner and back again, learning to maneuver my body in its new vehicle.

The inaccessibility of the world serves as a sobering reminder of my limitations, however. It is not moving through the world on wheels that slows me down; I am faster, spry and more lithesome perched in my seat than I have been for years on my feet. No, it is the world itself. It is the sidewalks without curb cuts, the doors without automatic openers, the bathroom stalls too small to fit my chair inside, the entrances with stairs and the ramps around back (if they exist at all). I go to the store and can’t navigate between the too-small aisles; I go to the movies and dislocate my neck in the accessible seating (after asking nondisabled people to move); I go to restaurants and stare at the wood of the bar as my friends tower on high-top tables above me.

I see the same inaccessibility reflected in the ableism of the sneering faces of people who tell me that requesting accessibility is asking for extra privileges, who illegally park in accessible spots and curse at me when I ask them to move, who laugh in my face and tell me my life isn’t worth living because I am diseased, disabled, and therefore somehow lesser, despite brokering a tentative peace with my unpredictable existence.

After the bitter, blissful pill melts beneath my tongue, my entire body is suffused with a gentle tamping down of the loud static screaming of nerves on fire and bones dislocated from the mere act of dreaming.

I step into the shower and turn away from the water, letting it run down my back until the bee sting prickling from my winged scapula dulls to a quiet roar.

I towel off, careful to dry my scarred left foot with only a featherlight patting of the towel, turning my face in the mirror to see the red scar that climbs up my jaw and into my hairline. So much of my body feels alien to me, like the swathes of skin that remain perpetually numb post-surgery, or a foot so painful that even a sheet resting on it is unbearable agony. My body, my diagnosis, means I am an intrepid adventurer exploring an undiscovered planet, with little warnings as to what local flora and fauna might hurt me — or how, but I am learning.

My body, my diagnosis, means I am an intrepid adventurer exploring an undiscovered planet, with little warnings as to what local flora and fauna might hurt me — or how, but I am learning.

I wing my eyeliner out from my eyes and darken my blonde eyelashes with mascara. I outline my lips in vibrant crimson, carefully tracing the jagged contours of my upper lip and the u-shaped curve swipe of my lower. I work carefully until I am fiercely plumed in war paint and warning signs, because makeup is one of the few ways I know to seize control of my mercurial meatcage. I pull on clothes and despite the siren-song calling of my bed, begging for my return, I head out into the world prepared to fight: the pain from my body; against a world demanding my erasure for the sin of not fitting in; and for accessibility, deserved, promised, but not yet guaranteed. I slip an extra pain pill into my purse and face the world, where every act of my existence becomes an act of resistance by simple virtue of being in my meatcage.

top photo by rawpixel.com on Pexels

You Have a Body features personal essays on the the ways we reconcile our physical forms with our identities. This series explores how our bodies sometimes disagree with us, how the world sometimes disagrees with our bodies, and how we attempt to accept that dissonance.

The Awakening

I’m twenty-seven years old and have never had a “good night’s sleep.”

From childhood through early adulthood, I struggled to fall asleep at night and fought to stay awake during the day. At its most extreme, my body would demand twelve-hour sleep-wake cycles: refusing to wake up until 3 p.m. and finally caving in to sleep at 3 a.m. Whether it was blamed on technology, caffeine, or another culprit, family, friends, teachers, and medical providers were convinced that it was me choosing to be this way. Part of me believed it, too. TV shows and movies reinforced these stereotypes in my mind. Yet, part of me found flaws in their accusations. The spontaneous bursts of nocturnal energy started long before I ever took a sip of soda or owned a cell phone.

When I turned twenty-three, I started to notice a shift: I began to never feel completely awake. Other chronic illnesses had prevented me from fulfilling my longtime dream of volunteering overseas for the Peace Corps so I did the next best thing: work with international students at a university. My body can’t handle humid tropics or arid deserts but a rural college town would be smooth sailing (or so I thought).

On one of my first days, I attended an early morning meeting with staff from another department. We started off with introductions and I enthusiastically scribbled each person’s details in my notebook, eager to foster this new partnership. Then I felt it. Unbearable sleepiness crept down my body, weighing my head and eyelids down like tar. I wasn’t sure what was worse: “admitting defeat” by putting my head down into my arms on the table to sleep, or enduring the awkward ebb-and-flow of my head with eyes rolled back and mouth hanging open. I figured that at least in the second case, I was somewhat upright and “attentive” (though probably appearing more like a propped-up zombie than a well-meaning professional).

I wasn’t sure what was worse: “admitting defeat” by putting my head down into my arms on the table to sleep, or enduring the awkward ebb-and-flow of my head with eyes rolled back and mouth hanging open.

This was my wake-up call. I knew something was definitely wrong. It’s hard enough to be taken seriously in the workplace as a woman of color spawned in the 90s. I am fueled to surpass expectations by every click-baity gripe about millennials on my news feed, every microaggression I’ve swallowed behind a forced smile. Embarrassment, frustration, and desperation drove me to seek answers from various doctors and test quirky tips from online listicles. I had cut out caffeine due to the onset of an unrelated heart condition. I tried wearing orange-tinted glasses to block out wakefulness-promoting blue light from electronics (but mostly just made me feel like a rebel pilot from Star Wars). Nothing worked. I would be so tired that the times that I could manage to call or email in to my supervisor to request a sick day, my slurred speech and nonsensical text led them to jokingly say that I sounded drunk. Coincidentally, the onset of my chronic illnesses had led me to become intolerant of both caffeine and alcohol.

This was my wake-up call. I knew something was definitely wrong. It’s hard enough to be taken seriously in the workplace as a woman of color spawned in the 90s.

After multiple misdiagnoses, two overnight sleep studies, two afternoon nap studies, and twenty-three years of self-doubt, I was diagnosed with narcolepsy. It took an average of seven minutes for me to fall asleep during the nap series; in one nap, I fell asleep after just 12 seconds! I had also experienced early rapid eye movement (REM) sleep in two of the nap sessions: one after 5.5 minutes and another after just four. To put this into perspective, it typically takes ninety minutes for a person to reach REM sleep after sleep onset.

My narcolepsy diagnosis was a double-edged sword. It was validating because I finally had “proof,” albeit just a medical term, to validate my struggles with sleep to those that had doubted me. I could get a doctor’s note to request accommodations at work. Yet, I soon realized that a simple diagnosis wouldn’t magically make the world empathize with me or work with my new lifestyle. I remember being stuck on the word “narcolepsy” when my doctor first diagnosed me. The only times I had heard it before were in comedic situations. A teenager face-planting into their bowl of Captain Crunch before school. A person slumping down into their chair mid-conversation with a friend. It was more of an old wives’ tale than a potential reality. I can see the gears turning in people’s heads when I tell them that I have narcolepsy. I feel like it’s a word that most folks have heard but never really processed. Narcolepsy is more complex than extreme bouts of sleep and people with narcolepsy are certainly more than running gags.

Sleep can be emotionally and physically draining for people like me. Some aspects of sleep can even be traumatizing. Recurrent, vivid nightmares throughout the night have left me feeling paranoid and jumpy well into hours after waking up for the day. Sleep paralysis is another symptom straight out of a horror film: I’m awake and blinking but I can’t move my body, speak, or breathe. Some folks see demons or hear scary voices when experiencing sleep paralysis. The unfortunate reality is that I have an unrequited love with sleep. I crave it constantly but only receive fractured, unrefreshing sleep in return.

I can see the gears turning in people’s heads when I tell them that I have narcolepsy. I feel like it’s a word that most folks have heard but never really processed.

Looking back on my life, I realized how little sleep hygiene was encouraged outside of family and doctors reprimanding me for my personal issues. In elementary school, we had school-wide “fun run” fundraisers and jump-rope competitions. Messaging on milk cartons, cereal boxes, and snacks emphasized each respective product’s contribution to a “balanced diet.” National campaigns promote physical exercise and conscious eating habits to people of various ages and backgrounds. Why doesn’t sleep carry that same weight? Would I have had a quicker, smoother route to diagnosis, treatment, and accommodations with more community education and societal advocacy? Would I have been spared from years of feeling like a delusional, worthless burden?

The unfortunate reality is that I have an unrequited love with sleep. I crave it constantly but only receive fractured, unrefreshing sleep in return.

I had struggled with depression and anxiety since adolescence. At first, I blamed my chronic illnesses for further aggravating my mental illnesses. I resented my nervous system for its inability to function properly, especially at the so-called prime of my life. I wasn’t one to say “no” to adventure. I wasn’t one to flake out on plans. I wasn’t one to show up late to work. I had become critical of myself for becoming the antithesis of the values I grew up with.

As I became more involved with disability rights, I realized that my embarrassment and frustration stemmed from the ableist structures and perspectives I encountered and internalized. Despite being regularly recognized for my initiative, efficiency, and innovation at work, I would be patronized for showing up thirty minutes late or sleeping at my desk during my lunch breaks. I hadn’t known about my rights to reasonable accommodations like flex time, restructured work hours, or nap breaks until I did my own research years later. Family would chastise me for spending family gatherings hidden away sleeping on a couch, rather than acknowledging how much effort it took for me to get ready, show up, and say my rounds of sincere “hellos” in the first place.

Friendships were the most painful gripes. Long-time friends grew uncomfortable with the new “fine print” that came with hanging out. If we went to a concert, I’d need reserved seating (no more mosh pits for me). If we went to a bar or coffee shop, I’d need to stick with water. If we planned a day of sightseeing, I’d need to schedule nap breaks in the afternoon. I’d still be excited to spend time together but these minor accommodations were deemed “boring” or “inconvenient.” If you think about it, many of the things our culture views as “professional” or otherwise “socially acceptable” are unnecessary, ableist, and classist. If there’s one positive aspect of having chronic illnesses, it’s that they’ve allowed me to become better at filtering out fleeting friends, silly “rules,” and shallow activities to prioritize the people, values, and hobbies that are worth my limited waking hours and energy.

If you think about it, many of the things our culture views as “professional” or otherwise “socially acceptable” are unnecessary, ableist, and classist.

Since the onset of narcolepsy, I’ve devoted more time to self-discovery and pursuing what fits my new lifestyle. I used to love the thrill of the outdoors, especially travelling to national parks across the U.S. Of all of the travels I’ve had, it’s the natural scenic areas that are most cherished and ingrained in my memory: from the humbling, giant sequoias of Muir Woods to the tranquil, almost surreal lotus paddies of Cambodia. It’s challenging for me to leave my house outside of work obligations these days because of my chronic illnesses. However, I’ve found that I can bring the outdoors in by tending to houseplants. Many people admire plants for their visual appeal or alleged purifying qualities. I appreciate them for their diversity and tenacity. Contrary to popular belief, many plants can be rehabilitated and eventually flourish with the right care and environment. You’ll often see mushy succulents, ratty ferns, and droopy begonias all bunched together on the same rack in the garden section of a big box store. You’d be surprised how many of those sad, worn-out plants on the sale rack can actually be salvaged.

Like humans, plants are not one size fits all. Even within the same family, different plants can have different needs. If you picture someone taking care of a houseplant, the image that pops into most people’s mind is someone watering it and maybe placing it near a sunny window. Like diet and exercise for humans, there tends to be a limited focus on water and light. The appreciation and corresponding care for each plant’s unique light, water, soil, aeration, humidity, and feeding needs allows them to thrive. It may be different or a bit more work than what you’re used to but there’s nothing like spotting a tiny new growth on a plant that you put effort into. This observation helps me push through times where I feel like I’m being “dramatic,” “inconvenient,” or “selfish” due to my narcolepsy symptoms. I can thrive, as long as my basic needs (however unique they may be) are met and the environment I’m in is conducive to my growth. People with narcolepsy can achieve great things and we need our families, friends, schools, workplaces, and communities to recognize and support that potential. Wakefulness does not equal worth.

top photo by Paula Lavrador on Pexels

You Have a Body features personal essays on the the ways we reconcile our physical forms with our identities. This series explores how our bodies sometimes disagree with us, how the world sometimes disagrees with our bodies, and how we attempt to accept that dissonance.