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Vulnerability

Guest Posts, Tough Conversations, Vulnerability

The Poetry of Awkward Silence

February 26, 2017
silence

By Benjamin Bagocius

I like awkward silences.

They are the unwieldy soul of social interaction. We often labor to exclude rather than befriend their wildness. I want to reclaim awkward silences, to listen for the ways their mysterious voices restore poetry to everyday conversation.

Awkward silences speak the language of poetry. As with poetry, awkward silences can be uncomfortable – but also liberating. They are breaks from habituated responses when something new might happen, supersaturated opportunities to rethink ourselves and each other. Generally framed as the worst possible social interaction, the awkward silence can be one of the most productive moments of our shared, public life. After all, awkward silences are never conditions of solitude. They emerge from encounters between two or more people. Just as poets need readers, and readers need poets, awkward silence, too, is about relationship. This is where its greatest promise lies for reimagining our public life together. Continue Reading…

Guest Posts, religion, Vulnerability

What I Learned From My Muslim Neighbors

January 29, 2017
religion

By Jessica Yaeger

Recently, I went to the “Get to know your neighbors” event at my local Islamic Center. My dual goals were to learn more about a religion I knew very little about, and to show support to our local Muslims who I imagined were not feeling particularly supported by the words of our newly elected President.

On the way there, I was anxious about how it would go. How many people would be there? I had tried to dress appropriately to be respectful, but had I succeeded? Why can’t I think of any intelligent-sounding questions to ask if I am put on the spot or in a face to face conversation? Will this be safe or will there be violence there from.. someone? Good grief, I know literally not a single other person attending, what I am thinking?!

Once I arrived, I saw I was one of hundreds of folks who attended the event, young and old, men and women, many different faiths and races. The brief introduction to the Islam faith was not only incredibly educational, it also was entertaining. When I had imagined visiting for the evening prayers, I had not visualized I’d be laughing so much! Our tour guide (there was one for the ladies and another one for the men) was funny, but also gracious and knowledgeable, and assured us that no question was stupid or off limits. As a result, our group of women, who were Muslim, Jewish, Christian, atheist and more, had an incredible dialogue that touched on scripture, God, prophets, head coverings, woman’s rights, and even terrorism. It was only 30 minutes of my life, but those 30 minutes changed me. Continue Reading…

Guest Posts, Sexual Assault/Rape, Vulnerability

Sexual Vulnerabilities: An Education

January 8, 2017
sex

CW: This essay discusses sexual assault.

By Beatrice M. Hogg

After hearing all of the recent media reports of sexual assault and improprieties, I wanted to think, “Glad that never happened to me.” But, like most women in this country, I couldn’t do it. In one way or another, it has happened to all of us. I have friends who have been raped and assaulted; amazing women who at some point barely escaped with their lives from domestic abuse. Some still have physical scars and many others still harbor emotional scars. When I started to think about my own life, I was surprised at all of the incidents that rushed to mind, some that I hadn’t thought about in years.

In my tiny coal-mining hometown, there was a small grocery store, owned by a husband and wife. When I was eleven or twelve in the late sixties, I would walk up there alone with a list of things to get for my mother. I always dreaded when the list included a meat item. That meant that I had to go to the back of the store, where the husband worked behind the meat counter. Almost every time I would go back there, he would come out from behind the counter to give me a big hug. His hugs always included a squeeze or a grope of my burgeoning breasts. I never told anyone. Would my father have believed me? In a town were everyone was armed, would he have gone up there with a shotgun? Would he have accused me of lying? Who was more credible, a shy little black girl or the friendly white grocer who everyone in town loved? As I took my meat purchases to the front of the store for the wife to ring out, I used to wonder – did he do that every girl? Did she know? I was overjoyed when the store went out of business. Continue Reading…

Vulnerability, Guest Posts, No Bullshit Motherhood, The Body

On Being Photographed (Mostly) Naked

September 7, 2016

By Kate Suddes

Mama, why are your boobs like that?
Can I count the pimples on your face?
Why do you have lines on your tummy?
Will my body look like yours when I’m older?

These are all good questions.  And someday, my baby girls, you may wonder why I chose to be photographed in a bra and underwear for (some of) the world to see.  Someday I’ll be gone and you may wish we had some of our conversations in writing.  About many things.  One of which may be bodies.

My body is never the same size.  It’s never made up of the same things.  It changes in an afternoon, in a night’s sleep, after a snack.  Bodies can look any number of ways.  You will be told that your body is your primary currency.  A tool to negotiate, persuade.  An advertisement (totally and completely, at that) for who you are.  For what constitutes your soul, your mind, your heart.  You will be made to think that your body can prevent you from doing things, from loving people, accepting love from people.  You will be asked to stay small – even if you are literally small or big – especially big.  But what your body says about you to others (are you listening?) is 100% totally and completely about them, their bodies and what they have been taught about bodies.  It is not about you.  It is NOT about you.  It is not about YOU.  (Kate, are you listening too?)  When you pass up a third cookie, you are not good.  When you have a fourth piece of pizza, you are not bad.  You are good and bad for a million other tiny reasons.  None of them have to do with food or your body. Continue Reading…

beauty, Guest Posts, Vulnerability, Women

Together We Run

March 7, 2016

By Liz Fischer Greenhill

I am cut from the fabric of my grandmother, wild and crazy, spirited and dangerous. Unpredictable women we are, the kinds of women they send to sanitariums. Women who fall apart. Women who must take pills to be good mothers, who must fold our pretty legs under our skirts rather than slip them into leotards for dancing. Women like my grandmother and me, we love to dance.

I grew up hearing the story of how my grandmother left my young mother in a burning car and ran away for help. I grew up hearing that she was irresponsible, didn’t cook, was never around, not a mother. How she would fill herself on samples from the grocery store but never buy anything, her long lacquered nails plucking morsel after morsel. She answered the front door wearing only her stockings and brassiere.

I thought she was glamorous.

I’d seen other grandmothers like mine. With puffed up curls, coffee-colored eyebrows more paint than hair, grey roots shining from under their hairlines like a fallen hem. Beautiful women, grown larger with years, having lost their waistlines. That’s what she said, that she’d lost her waistline. Don’t let it happen to you, she warned, before I ever had a waistline.

I remember childhood crying fits at night in bed. My mother coming in, how she perched on the edge of my bed, her hand rubbing nervous circles on my back. My body shaking in heaves I couldn’t stop. Worry in her voice, sometimes we just need to cry for no reason.

 I think I had reasons. A fire burned inside me, hot coals in a clench of skin and muscle. It was nothing I could figure out how to say.

Gwendolyn.

My grandmother.

In my dream we are schoolgirls together, laughing in the courtyard, smoking cigarettes in the woods, skinny-dipping in the river. We roll our skirts up and our stockings down. We trim each other’s hair to pageboys, smack bright red lips to each other checking for an even kiss mark. We lie in the dirt and dry grass under a hot southern sky and sleep, straw hats on our faces, legs overlapping.

My grandmother was, as her children say, so aloof and excitable, so wacky and unreliable, perhaps she was unable to be a friend. I don’t want to think of her that way. I want to think of us together as teenagers. Growing to be young women together, confiding in each other our doubts and sorrows and wild panic, and helping each other not abandon our children. I want us to be friends who wet-nurse each other’s babies so that some days each of us can go wander a river, or stumble home from a party, or howl privately to the sky. We could have allowed each other to feel childless for long hours of the day, to feel pretty again and youthful, to remember desire.

I would have been at the births of my uncles, my mother, my aunt, I would have held her hand and looked deep into the scattered brown of her darkening eyes and said, Yes, you can leave. Yes, you can go when the baby comes, I’ll take care of it for you, you can go. And because I said it, because I gave her the open door, she would have stayed.

And when my child was young and I awoke in the cold horror of a nightmare—a stampede of animals turned my son to dust while I applied lipstick in a mirrorshe would have been there to pet my hair and dry my cheeks with the sides of her hands and laugh, Girl, you know you wish it and at the same time you don’t. It’s alright, we all do. You love him to death, that’s all it means.

If I’d had her there to say it again when I was often so worried I might leave the baby on the counter of the fabric store and step out into the city, carefree and light, strolling the streets, peering in windows and wondering at the world, the baby more forgotten than a button that popped off my coat. She would have brushed my fears away, easy as lint.

Alone in my bedroom, a small girl, shuffling a halo into the green carpet, my hands clamped over my ears, my eyes pressed shut. A frenzied panic in my chest. It started soft like a dozen or more radio stations clicking on, a low murmur. A jumble of sounds and overlapping voices getting louder, reporters relaying news of bombs and wars and death tolls, numbers rising. I couldn’t make it stop. Just had to wait it out, five minutes, ten minutes, twenty. Shut out the light and as much of the sounds as I could, clenched. Around and around the room.

Who could I tell? My mother couldn’t understand. Already, her frequent looks of concern slanting through me. The nerves reigned in her grip. All the yelling and slammed doors. Rug burn on my shins from scrambling up the carpeted stairs too fast, just to be alone in my room.

In picture albums, my mother is a brunette Shirley Temple with scabby knees and a gleaming toothpaste smile. Then, an adolescent as lovely as a swan, thin-necked, sweetly smiling, her tiny poodle skirt like an over-turned martini glass. In high school she is pretty in that perfect girl-next-door kind of way, short in stature, feminine, a brown bouffant, just a touch of eyeliner, lip gloss, a good girl. We would’ve run in different crowds if we were classmates. She, in sync with the cheerleaders, in uniform, belonging; me with the artists, in our tattered vintage clothes and unkempt hair, dreaming of a way out.

As a teenager I did not look in the mirror. I only did it if I had a purpose, but never for the sake of admiration. I was told I was pretty like my grandmother, but I did not allow the compliment to stand. I knocked it down and never looked long enough to form my own opinion—afraid it wasn’t true. Afraid it was.

I’ve seen pictures of my grandmother in a sequin leotard, in a line of women, elbows locked like paper dolls, dark-lips, arched smiles, one leg bent, one leg lifted, all in sync. My legs are shaped like hers.

If my grandmother and I had been young together we would have been like sisters—best friends, accomplices to each other’s silly crimes. We would have grown up together and then stayed together, moving to the same block, a strip of fence between our houses. We’d have made our husbands tear the fence down so there was nothing between us. We would have smoked cigarettes over black coffee and a fallen cherry pie and bitched about the neighbors’ triumphant cakes and their children’s spotless rompers, the women we knew unlike us—we, who prefer to read Sylvia Plath or jam a fistful of wildflowers into an old bottle, rather than slip rubber gloves into a sink of bubbles or mop the floor. We don’t bleach anything clean. We don’t iron any man’s pants. Our bathrooms are draped with our stockings just rinsed. We let our children run wild and cook one monstrous dinner for all of us to last as long as it can, so that in the evenings we can slouch in an armchair with a book in hand, or lay on the rug, legs swaying to a record spinning on the stereo. All summer we eat wild strawberries, licking the red stains from our fingerprints, and shoo away mosquitos from our bare legs. Winter evenings we bundle into matching scarves and walk hand-in-hand well past the first stamp of the moon, until we are surrounded by nothing but blackness and the smallest pricks of light that remind us somehow that we are not lost.

And when we lose ourselves, we help each other stay safe. We take each other’s children and mother them as best we can until the other is well enough to come stand in the house again.

And when she surfaces, we bend a fence around the other, to protect the fragile cracks while healing. Keep the men out, the children away, bring each other carefully back out to the starlight.

My grandmother, my love, I’m talking to you.

I came to you when my son was just a baby, do you remember? We saw you in the hospital and I bounced him on your bed and I told you all about him. I showed you each of his dimples and patted his fat hand to yours. I told you of his first words and his squinty smiles and the way his hand grasped for me in his sleep.

We came all that way to say goodbye, did you know?

In your apartment we found your jewelry, all the bracelets I mailed you from New York City street vendors, plastic turquoise and mother-of-pearl.  We gave away your aqua spiked heels, the ones you wore all the time with over-sized sweaters and  leggings, showing off your shapely legs. I wish I had them now.  I would have liked to have borrowed them, now that I’m a woman.

My grandmother, you have not known me as a woman. True, I was a mother when you died, but I was girlish, I was fighting forward with my eyes closed, I had not yet seen my own body in the mirror, had not stepped into the caste of my widened skin. The woman I would become hung around me like a ghost then.

I was using the word mother for myself, tentatively, and I would not call myself woman. A girl. What is in a girl that is lost in a woman?

Seated at her vanity, my mother, tucked in a towel, leaning close-in to the mirror, blow-drying her hair, spritzing hairspray, brushing her face with powder, lining her lips a sharp pink and coloring them in, dabbing at the quilted pillow of eye-shadow, a swipe of rouge, not too much, a touch of Shalimar to the wrist. Weddings, bar mitzvahs, services, dinners, funerals, over and over, layer upon layer. The same ritual since her dates and proms and cheerleading games and sorority parties. Through the crack in the door I watched her make herself into someone I did not want to be.

What does it take to be a woman?

What does it take from you?

My grandmother and I are the kinds of women who retain a certain girlishness as we age, coy and flirty, we thrive on admiration, we stumble through our schedules, cannot maintain routines.  Always changing, we are like kaleidoscopic colors.

Did she see it in me, I wonder, that same patterning, that wild impulse that leapt a generation and settled into me, linking us in a slip stitch. Granddaughter. Grandmother.

When you were my age now, grandmother, you were just out of the hospital and fragile still. Your long fingers pulled stems from tall black buckets at your job at the flower shop. I can see your eyes squint, lips frown, while you arrange a bouquet in a vase. Your painted nails pinch off the rose thorns. A ruffle of petals. The plucking of leaves. This one for a funeral. This one for a thank you gift. This one for a girl in the hospital.

What song plays in your mind while you hum? Do you think about the doctors, the white bed, the pills and machines? Do you remember how you were lost to your children?

I don’t want to follow you there.

This is a story that changes in my hands.

In the house, when my son comes to me, I wrap my arms around him. His head smells like wet sand and eiderdown. His fingers tap upon the stacked bones of my neck. That is the only sound in the room. His hands are beautiful. His feet are free. When our embrace is over I’ll cook him breakfast and we’ll walk to the market, the bookstore, and then we’ll come home.

Grandmother, I remember the smell of you, rose water and powder, the perfume that drifted onto my shoulders. The black curly mess of your hair. Liquid brown eyes. Dark. Rimmed in black pencil. The southern twang that whistled through your orange smeared lips. Your hands, browned by the sun, thick-knuckled like mine. Too many gestures. Fingers quick as birds. A jumbled of creases in the palm. We called you Nana.

You live in me now more than before.

Nana. In my dreams you are whole.

I see us as girls together, scrappy and mischievous in dirt-covered dresses. Playing toy soldiers and tin flutes in the dusty yard. Southern girls, girls who know to look down in public and look up in private, we were those girls.

Turn your back to me so that I can button your dress, slip the slim pearly shells into the tight little mouths that dot a line along your spine. Let me help you put yourself together, gather yourself. Turn around, let’s see your lips, give them one nice press and there you are.

Grandmother, my love.

Give me your hand.

Let us go back to the car—that car that burns eternal behind my mother’s round eyes—there is smoke, the heat is pulsing off the asphalt, the door handle is right there gleaming. Open it. Get the child. Get her out. Take her hand and I have your hand and together we run.

 

Liz_Fischer_Greenhill-IMG_6874

Liz Fischer Greenhill is a visual artist, a poet, and a nonfiction writer. She is also an acupuncturist who practices hands-on healthcare in Portland, Oregon.

Liz’s work has been published in The Rumpus, Gertrude Press, Nailed Magazine, The Collagist, Perceptions, Four and Twenty, Oregon East, The Dream Closet, and the poetry anthology Step Lightly. Her work is forthcoming in The Untold Gaze, a book of writing paired with the paintings of Stephen O’Donnell. Her 16 mm animated short, “The Loveseat,” showed in LGBTQ film festivals across the US and in Canada.  Currently an MFA candidate at Eastern Oregon University in Creative Nonfiction with Lidia Yuknavitch, Liz is working on her first book.

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Join Jen Pastiloff in Tuscany Sep 17-24, 2016. There are 5 spaces left. This will be her only international retreat in 2016 and is her favorite retreat of the year. Email barbara@jenniferpastiloff.com asap. More info here. Must email first to sign up.

 

The 12 Day Detox is here. Sign up now for the next cleanse on March 14, 2016. Space is limited. This detox comes at just the perfect time. Reprogram your body and mind as we move into the holiday season. This is your time of rejuvenation and renewal.This is not a juice fast, or a detox based on deprivation. Click photo to book.

The 12 Day Detox is here. Sign up now for the next cleanse on March 14, 2016. Space is limited. This detox comes at just the perfect time. Reprogram your body and mind as we move into the holiday season. This is your time of rejuvenation and renewal.This is not a juice fast, or a detox based on deprivation. Click photo to book.

 

Join founder Jen Pastiloff for a weekend retreat at Kripalu Center in Western Massachusetts Feb 19-21, 2016. Get ready to connect to your joy, manifest the life of your dreams, and tell the truth about who you are. This program is an excavation of the self, a deep and fun journey into questions such as: If I wasn’t afraid, what would I do? Who would I be if no one told me who I was? Jennifer Pastiloff, creator of Manifestation Yoga and author of the forthcoming Girl Power: You Are Enough, invites you beyond your comfort zone to explore what it means to be creative, human, and free—through writing, asana, and maybe a dance party or two! Jennifer’s focus is less on yoga postures and more on diving into life in all its unpredictable, messy beauty. Note Bring a journal, an open heart, and a sense of humor. Click the photo to sign up.

Join founder Jen Pastiloff for a special Mother’s Day weekend retreat in Ojai Calif, May 6th, 7th, & 8th, 2016.
Get ready to connect to your joy, manifest the life of your dreams, and tell the truth about who you are. This program is an excavation of the self, a deep and fun journey into questions such as: If I wasn’t afraid, what would I do? Who would I be if no one told me who I was?
Jennifer Pastiloff, creator of Manifestation Yoga and author of the forthcoming Girl Power: You Are Enough, invites you beyond your comfort zone to explore what it means to be creative, human, and free—through writing, asana, and maybe a dance party or two! Jennifer’s focus is less on yoga postures and more on diving into life in all its unpredictable, messy beauty.
Note Bring a journal, an open heart, and a sense of humor. Click the photo to sign up.

 

Guest Posts, Binders, Vulnerability

Birthmarks

March 4, 2016

By Sarah Meyer

As a kid I conceived of birth marks literally: bruises on the little body applied in the course of birth that remained forever. To this end for many years I thought the birthmark on my left shin was a bruise that, were others to touch it, would hurt extremely. Others did touch it, because I was always showing it to people. And when they touched it I would recoil in a pain that felt real but technically was not.

Yesterday a mentally ill woman tried to trip me in front of an oncoming train. I did trip, but fell the other way, toward the platform wall instead of toward the tracks. Had I fallen differently I would of course not now be writing these words.

My birthmark, I like to say, is in the shape of a heart. Although anything can be in the shape of a heart if you want it to be. When my sister and I bathed together as children she memorized it. Years later, she mentions knowing my birthmark is on my left shin because it was always on her right side when we were in the bath, sitting across from each other sharing toys.

I’m thinking now of Achilles, of his one point of vulnerability, where his mother pinched him as she held his baby body over the river Styx. I think of us in the bath water, my birthmark between us, and Achilles rises to the surface. I am thinking how my birthmark used to feel like that kind of singular vulnerable space, how now my entire body feels like such a space, how it might be nice to feel like my vulnerability were reduced to a one-inch diameter, how despite how it felt to me then, that was never near true.

After the woman tripped me, I fell toward the wall and held onto it. The tiles are white and smooth. I looked at her, and in my shock the only thing that came out of my mouth was the word what. “What?” I asked her, and held onto tiles on a wall that are wide and flat and difficult to grasp. We made eye contact, and she stuck her tongue out at me and fled. Her tongue was knotty and fat, and it has come to mind in the hours since this happened, the tongue alone. I could feel the spot on my left shin where she’d struck me for hours afterward even though she left no bruise or cut skin. I just knew where she’d struck me, on the left shin on or near my birthmark, and it rang out to remind me of something the rest of the day.

As a child I was often confused about how some babies managed not to become marked during their birth. How did some of us exit the birth canal, touching the sides of it, of our mothers, and leave with a bruise when others could do this same thing and not be marked? Continue Reading…

courage, Guest Posts, Vulnerability

Bang Bang, Shoot Shoot

February 15, 2016

By Stephanie Couey

When I hold it, it feels nothing like a cock.  Not even a hint of cock in this piece of heavy black metal; a symbolism I had imagined would be solid and indisputable goes limp as I hold the grip with my palms, resting my fingers along the barrel.  As I hold it before firing, all I can think of, is unveiled violence, and how it doesn’t, at any moment, not even as the gun goes off and hits the target I’m aiming for, feel anything like power.

My partner, hopefully the last person I have to love, and I pull up into the parking lot of the shooting range with a plastic Wal Mart bag full of doughnuts and energy drinks.  He says something to me about this place being ripe with material, just as I’m thinking the same thing.  I feel myself slip into the role of slimy anthropologist, knowing I’m sure to get my fill of white right wing men to observe like animals.

The parking lot in Fort Collins, Colorado is unsurprisingly full of utility trucks and oversized family vehicles.  As we walk into the front room of the range, he emphasizes how important it is that it not be called a “shooting range” but a “gun club.”  He tells me this is a place where people go to find a community outside of their homes or jobs, not just to shoot guns.

If I can respect anything, it’s the need for establishing community, but I wonder if I can keep myself out of the way enough to be able to see the community, and not just see my own opinions mirrored back to me in a mosaic whose patterns I think I already know.  In the patterns, I’d see a row of men, shooting just after the Sunday morning service, gripping their loaded second cocks, discharging projectiles one after the other toward pieces of cardboard they envision to be terrorists, homosexuals, atheist academics, sexual deviants courting their daughters, or some amalgamation of all of them, and I could be right, but I could also not be. Continue Reading…

Family, Guest Posts, sisters, Vulnerability

Wonder Twins

December 11, 2015

By Marin Sardy

My sister speaks easily with strangers. She’ll chat you up at a party or a neighborhood coffee shop and introduce herself by her nickname, Sadie. You may find yourself looking across a beat-up wooden café table and noticing the straight line of her nose, the high cheekbones, the blond hair swept up loosely, the wrap dress flattering her lean shoulders. She’ll come off as confident, casually beautiful. She she’ll talk openly about her life and tell you the kinds of things most people skirt around, until she gets distracted and you realize that she has forgotten that it mattered or that you cared to hear it. It’s best if you don’t take this personally. Because everything matters and nothing does, and it all gets mixed up most of the time. That’s what she knows and it’s what’s hard to express about the life we have lived—what says, No one has imagined us.

When she talks to you, the facts will be right but the story will seem more like a tangle than a thread, and it will sound a lot like this:

I’m just getting a cup of tea, nothing to eat. But I have plenty of time to chat. Then I have to go take my sister’s car away from our mom. It’s not a big deal. Mom’s not mad about it anymore. She’s actually going to drive up to my house and park it there and then I’ll give her a ride home. There was this whole thing, though, last week. Marin left her Subaru here in Santa Fe when she moved to New York a few months ago. She was letting Mom use it but now she doesn’t want her driving it anymore. Which I think is a good idea considering what’s happened, although Mom’s pretty bummed.

It was worth a try. Marin couldn’t take the car to New York anyway. And Mom has pretty much no money. She lives on Social Security and she used to just walk everywhere or else she got us to give her rides. Marin asked me before she moved if I thought Mom would disappear with the car or sell it or anything like that. But mostly she was just worried Mom would decide to go on a big road trip to California and put tons of miles on it or something. I said I really thought it would be fine. Mom was so excited to have a car and she seemed totally willing to follow all Marin’s rules. Although of course because of her illness Mom’s memory is so elastic there’s no real way to be sure she’ll remember she agreed to anything, especially after a few months. Existence for Mom only happens in the present moment, really. Everything else fades in and out like dreams. Totally delusional, totally unmanageable. Anyway I have to work tonight so I need to get the car back before that. Continue Reading…

Guest Posts, healing, Illness, Letting Go, Vulnerability

Beneath The Glass

November 12, 2015

By Lauren Randall

I spend most of my time dreaming.  The most gratifying vision I have is of life on pause.  I dream of the world completely stopping for everyone other than me.  What will I do in this static world?

Sleep.  I will sleep.  Nothing more.  Nothing less.

I dream that this sleep will take away everything: the fatigue, pain, neurological damage and every ‘red herring’ that cannot be quantified by the medical community.

I will wake to my ‘old body,’ my teenage body, the one I so shamelessly took for granted.  The body I binged and purged from out of hate, the body surreptitiously stuck on the other side of the glass.

I didn’t think much about chronically ill people back then.  I never wondered about their nostalgia for health, that intense pining their imagination could make so palpable.

For them, life could be this immensely beautiful view through a cracked and clouded windshield; every day spent futilely trying to clean it off from the inside.  Despite the irrefutable knowledge that all that shit is just out of reach, the thought of doing nothing from the other side of the glass likely felt even more deceptively tragic.

I do that a lot.  I refer to ‘them’ without including myself.  I try to clean the glass from the inside knowing it will never fully penetrate the brown decrepit haze.  I am enlightened enough to know that real acceptance –seeing beauty within the cracks and dirt– is where true healing and happiness will lie for me.  But I cannot escape the fight, the quest to see the entire scene.  Sometimes that makes me feel beautifully hopeful, sometimes that makes me feel like I am wasting what is left. Continue Reading…

courage, death, Fear, Guest Posts, healing, Inspiration, Vulnerability

#MyLifeMatters

November 10, 2015

By Klyn Elsbury

A few nights ago, I was wrapped in a blanket, lying on top of an RV off of a scenic overlook in Utah staring up at a sky full of endless, scintillating stars. The air was cool and crisp, delightfully tickling my lungs as they adjusted to the altitude. A handsome man with a beautiful soul was holding my hand and pointing out Venus to the south. Together, we were dreaming about the future. Something that until Orkambi came, I had all but given up on.

I dropped out of college because I started getting hospitalized several times a year, and I believed I would never live long enough to pay off my student loan debt.

I moved to California from Florida for a career in biotech/pharmaceutical recruiting so I could be closer to the companies that were developing the very drugs that would keep me alive. That would give me hope. When I started getting hospitalized every 4 months, I made the choice to leave my corporate career and preserve my lung function via exercise, diet, and adherence to prescriptions that managed the symptoms. I tried to get in on every clinical trial for Orkambi, before it was even called Orkambi, but time and time again I was denied because my lung function was too unstable.

He squeezed my hand excitedly, “did you see that?” referring to a shooting star that emblazoned an almost pitch black night. My heart skipped a beat. I shut my eyes and made a wish that one day, someday soon, I would be on this drug. I opened my eyes to see him smiling back at me.

For the first time in a long time, I believed I would have a future again. I was the first person in clinic the day after Orkambi was approved. However, they couldn’t write a prescription because I needed to go on IV antibiotics first. My lung function was around 50%. It was my 3rd round of IVs this year alone.

Meanwhile, one of my girlfriends locally who got approved for the drug, posted on Facebook that for the first time in years, she woke up without coughing. I can’t imagine a morning where an alarm clock wakes me up instead of a violent core-shaking, gut busting cough.

“Wow!” We both said in unison at yet, another shooting star. Who is lucky enough to see two of them in one night sky? Just moments apart? Surely this means there are good things to come. Waking up without a cough became my second wish. Continue Reading…