Browsing Tag

cancer

Family, Grief, Guest Posts

Grief, Unfolding

December 5, 2019
gift

By Julia Dennis Car

“Jo, you can’t kill Daddy.”

My mom and her sister stood, broken, at the bedside of their father, my Granddaddy.  The cancer that started in his bladder had taken over his other systems; he “lived” mostly unconscious, thanks to morphine.

Mom couldn’t stand to see Granddaddy in such a way, and I know in her guts she would have done anything to separate him from his pain.  My aunt isn’t fiery like Mom, and she knew Mom had what it took to hold the pillow over Granddaddy’s face. She didn’t kill him; the cancer did, days later.

Now it’s my turn. I’m standing in her corner as she nears the end of her own battle with cancer. In the end, will I will have the same impulse to smother her?

Mom’s diagnosis of Stage IV ovarian carcinosarcoma delivered a sucker punch no one saw coming.  It’s incurable, and only about 25% of women live as long as five years. I imagine her little round body up against the ropes, her healthy tissue pummeled by disease and its treatment. If left untreated, her body’s systems will gradually succumb. They’ve already started.

They took the womb, ovaries, cervix, parts of her intestines, and the surface of her liver. Sewed her up tight.  My first home is gone.

With unbridled optimism, Mom trusted her doctor’s plan of care and faced off against her next enemy.  Chemotherapy. Can you imagine a more difficult choice? Don’t take chemo, and slowly die, or take chemo, and die slowly.

With fingers crossed, I watched Mom take the beating of her life and was lifted up by her light and positivity. After the months-long regimen, a scan found the stuff was no longer “active.” She got some time off for good behavior and slowly regained some strength and vitality.  Our family vowed to embrace each day, focus on the positive.

Mom is a feisty woman, a flaming introvert, but without a demure bone in her body. She’s crass, enjoys dark and twisted humor. Once, while visiting San Francisco, she high-fived a costumed Grim Reaper in a public park then insisted the image be framed on her gravestone.

Days after her diagnosis, Mom hung a set of pink boxing gloves on her front door to prove to the world that she intended to pummel her disease as Ali did Frasier.  In the oncologist’s office, two years into the bout, she laid some wit on the nurses. When they left the room, she told me “When I stop being funny, I’m done.”

She’s still funny, but her cheerfulness is waning.  The insidious fuck is still inside her, having its way with her, never really having gone.  It’s in her liver and her guts, probably other places too. She’s at the end of her second phase of chemotherapy.  The gnarly effects of the disease and the treatment are taking their toll, and she’s so, so tired.

Albert Einstein said, “human beings, vegetables, or cosmic dust —we all dance to a mysterious tune, intoned in the distance by an invisible piper.”  As for my own part in this, I see myself dancing with grief and gratitude.  The maestro taps his baton, and I’m an accordion: bending, twisting, squeezing, breathing.  Some days the notes I play are fear, worry, sadness, regret.

I watch her struggle. And tire. Though outwardly I remain upright—strong in the face of this disease and her pain—the truth is at times there’s no air left in me, and I bend or lean into whatever will hold me up. I cry; wail the sharp notes away.

But soon enough, invisible hands unfold me, pulling and stretching me out as I fill with air.  Soon enough, I can breathe again. It’s not my cancer, but it’s changed me. It has wrung me out and left me raw. And I’m realizing that the painful stuff is a gift.

I’ve had this woman’s hand to hold for more than forty years. With unconditional love. Her illness and mortality have bitch-slapped me into understanding and appreciation.  My mother’s killer screams Wake up!  Don’t you realize the gift you’ve been given?  I do.

You see, in the midst of this pain and uncertainty and fear, beautiful things have happened.  These last two years have been the hardest, and best, of my life. I’ve been helpless, unable to affect change; therefore, I’ve had to let go.  I’ve unfolded. Aware and accepting of mortality—hers, mine—I’ve felt her love more deeply, tried to love her more deeply. I hope she’s felt it.

I’ve made two trips around the sun, and the days were full of love and light, opportunities and misfortunes, laughing and heartbreak. While holding the hand of impermanence, I’ve uncurled my fingers, loosened my grip on fear and insecurity. Wrapped myself in vulnerability.

I hiked for three days on the Appalachian Trail, confident and proud and strong. Crippled with despair, I limped into a therapist’s office, debilitated by depression. Swaddled with love of family and friends, I shaved my head and tattooed my arm and laughed till I cried and sobbed until I was at peace. I’ve said yes to more time by myself and prioritized more time with my family.  I’ve learned to say “no” to things that don’t nourish me. Except ice cream. I always say “yes” to ice cream.

I’ve asked hard questions and confessed hard truths.  Entering their adolescence, my kids broach topics Mom wasn’t comfortable delving into when I was their age:  illness and responsibility and death and sex. I answer with raw honesty. They’ve seen me in tears and I hug them to me and share my pain with them.  I think it’s wrong to pretend it’s not there.   I’m crying because I’m sad.  Yes, she’s slowly going to become sicker and sicker.  We aren’t going to the beach this year so we can spend time with her.  Yes, she’s going to be cremated. I want to be cremated, too. Regarding matters unrelated to Mom’s illness, but highly relevant to their curiosity and social understanding (and a disheartening example of the hyper-sexualized culture kids are growing up in) Yes, orgasm is “a really good feeling when you have sex,” but you can feel it by yourself too.  No, you don’t need to be watching porn.

For many years, I struggled to understand Mom.  She wasn’t blessed with physical gifts like Laila Ali and has never had a green thumb.  On the contrary; her favorite quote is “Sweating is gross and fresh air makes me sick.” She stays inside, reading; I’ve run marathons. She’s quiet; I’m loud. I deep-dive into conversations; she’s more comfortable on the surface.  I lift up furniture and tend to plants and pour my heart out on the page. She’s there, watching all of it. Though she kills all things that conduct photosynthesis, Mom grew a beautiful family; planted roots that spread deep and wide.

Before Mom’s illness jabbed me in the heart, I didn’t value her quiet; rather, I doubted its power.  Mom has shown me that there are more ways to demonstrate strength than with vigor and brawn. She’s shown me that I don’t always have to do something; hers is a quiet persistence of being.

My connection to Mom is primal, deep.  In so many ways my opposite, I feel her pull as the force that keeps me balanced.  Her spiritual tether is met only by the one I share with my own children. She’s been there, ready, even when I didn’t even know I needed her—I hope to be for my kids all she’s been for me.   And these days, when I’m rolling around on the mat in a struggle to make sense of all this, I try to use her own words of wisdom to self-soothe: “When you give birth to a baby, you grow a new heart.”

See, in a macabre way, my grief is a baby.  Mom’s disease birthed this dark pit inside me.  I like to imagine that as I trudge through the progression of her illness (and, ultimately, her death) I’m cultivating space in my heart for my grief and gratitude to live harmoniously.  Like Yin and Yang, there is literally darkness and light in my little heart, all snuggled up tightly together and swirling around.

Maybe that’s what this is all about: vulnerability and strength, terror and comfort, distortion and balance, heartbreak and growth, dying and living. The cyclical, recursive nature of it all.

Allow me my suffering, so that hers may end.  Allow the pain to break me, so that I may put myself back together.  I’ll be stronger where the cracks mend, and softer in the more stubborn places.  Allow me the lessons to be learned in her absence. Allow me to experience her in new ways—ideas, smells, sounds, gestures.  Allow me to grow bigger; big enough to hold my grief and build a life that’s richer and more beautiful. I think I can hold it all.

About a year and a half into this journey, at a concert with my brothers and some dear friends, I passed out cold. Imagine a beach ball that’s been forcefully submerged under water. The pain and worry I’d managed to shove down demanded to surface. An anxiety attack hit like a ton of bricks. As I awoke, my two brothers literally holding me up, I remember my body heaving as I sobbed: “I’m afraid of how much it’s going to hurt.”

The ancient poet Hafiz wrote that “It helps to see the Creator’s kind face / before he rolls up his sleeves, / and starts pumping the bellows / and cleans off his wire brush / and works with his other tools / he eyes you up / knowing how much this is going to hurt / to make you perfect.”

Why are we here? To be made perfect? I don’t know much, but that I was given the gift of consciousness. I believe it’s my job to do the work: to pay attention to the Universe and embrace my place within it. To learn the lessons. That means with open arms I must greet the anguish and the pleasure. I’m willing.

Mom is in the final round of this slugfest. She’s losing stamina in her bob and weave. Soon enough, she’ll receive the final blow, or choose to throw in the towel. I’ll be rocked from my foundation. But I will be ok down here; I am rooted in her. I will remember her.  I will celebrate her. I will talk about her and laugh, curse and cry. Her influence is indelible.

For now, I will sit with her and hold her hand and just be. For the rest of forever, my dust and Mom’s dust will dance; her warm, loving hands guiding me and loving me and leading me as the piper plays on.

Julie Dennis-Carroll is a family-centered West Virginia native who’s called Western North Carolina “home” since 2007. She is a writer by passion, and uses writing as therapy, though she is a speech-language pathologist by training. Julie fills her heart by reading, traveling, and playing in the dirt.

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cancer, Family, Guest Posts

A Walk in the Park

November 20, 2019
bother

By K.C. Pedersen

Six months after my ex-husband died, his brother left a message on my voicemail. He was going to blow my fucking head off, Luke said. While Tim was alive, Luke often showed up unannounced at our remote rural property. He was also apt to appear at the local café/bar and seat himself at my table as I visited with friends. Yet despite Luke’s history of violence, felony convictions, and easy access to guns, I was not particularly panicked. As a counselor, educator, and deputy sheriff, I considered myself skilled at soothing agitated men. I choreographed elaborate scenarios for how I’d rescue my students should a gunman appear in my classroom.

Besides, I’d known Luke since his birth; it was difficult to fear someone you’d first seen in diapers.

“Tim’s bothering me,” Luke’s message said. “If he doesn’t stop, I’m going to blow his fucking head off.”

I called Luke back. “I know about Tim bothering you. He bothers me too. But I thought I should point out that Tim is dead.”

So Luke threatened to blow my head off instead.

“Does he have a gun?” the 911 operator asked. After Tim and I separated, and he took to showing up outside my window in the middle of the night, they asked the same question.

“I have no idea,” I said then. “Should I go out and ask?”

Tim often told me, “There are things about me you’ll never know,” and despite our fourteen years together, I had no idea whether he had guns. Prior to our marriage, he’d been a Buddhist monk, so firearms seemed unlikely, at least to someone as much in denial as I was.

I found out the guns were real the day before Tim’s death. His young daughter told me he visited the shooting range daily to perfect his aim. When he tried to force her to hold one of the guns, she called me, sobbing

“I don’t know if Luke’s armed,” I told the dispatcher. She took my name, and an officer called me back.

“Did you record the message?” he said. “If so, we have a crime.”

“I did,” I said. But when I tried to retrieve Luke’s message, it had disappeared. “I must have messed up somehow,” I said. The officer started the recitation: “no crime has been committed, no witnesses, no blood, get a restraining order.”

“I am a deputy sheriff,” I said. “At your office. Look it up.” For eighteen months, I’d coordinated a drug and alcohol program. “I’m quite familiar with the danger of having one’s head blown off, whether I recorded the call or not. I’d like you to do something now.”

Within the hour, Luke was arrested. The following day, someone called from the prosecutor’s office. Would I be willing to drop the charges? “It’s a lot of paperwork for us,” she said. I requested they proceed. From working in law enforcement over the years, I knew that if charges aren’t brought, the crime never happened. You need a paper trail.

I was glad I insisted, because a few days before Luke threatened me, he’d stopped taking his antipsychotics. When his case went to court, he was let off for thirty days served, with instructions to take his meds. I’m presuming Tim stopped bothering him, although my own nightmares continued for years.

Tim was one of the first American males ordained as a Chinese Buddhist Monk. When I met him, though, he was in an alcohol rehab center. As was I. We were married almost a decade before I knew he’d written a book. He probably realized that if I read it, I would have horrified at how he treated his assistant, because it was the same way he treated me.

Though many Buddhist teachings are about preparing for death, when Tim was diagnosed with cancer early in our marriage, he refused to acknowledge he was going to die. Although his oncologist explained that there was no known cure, he insisted he was going to beat this thing. However, she added, it was a “good cancer.”

“What’s a good cancer?” I asked.

“The average life expectancy is seven years,” she explained.

About six years in, Tim’s symptoms flared, and he volunteered for an experimental protocol, “the McDonalds of bone marrow transplants,” he said.

“What does that mean?”

“A walk in the park.” He handed me the document that authorized the treatment. I was chilled to the bone.

“Nobody’s survived this,” I said. “Not even the beagles they tested it on. The longest even a dog lasted was eleven months. If you do nothing, who knows how long you might live?”

One seeks to understand unhappiness or grief in various ways. Tim’s parents found sanctuary in the Mother Church, as Tim called the Catholic faith in which he was raised. For ten years, monk’s robes provided sanctuary for Tim. But his alcoholism lurked just outside the monastery gates. One afternoon, he stopped into a tavern and ended up roaring drunk. Ashamed, he left the monastery and found work as an orderly at a managed care facility. On what was intended to be a one-night stand with the night nurse, he conceived a child.

That’s what he told me, anyway. When I met him, he was still in inpatient rehab and still married to that nurse. After he died, I found passionate love poems he and the child’s mother exchanged early on. Whatever flame they had, though, did not last. As co-dependent partners do, I devoted myself to analyzing my husband. Through the Enneagram, for example: Tim was a One. Per the Enneagram, he could be a great leader. Or he could be a despot. My delusion was such that when his oncologist told us his cancer was incurable, I wrote in my journal that I would find a way to save him.

Tim’s parents lived an hour’s drive down Hood Canal from us, and in the early years, his young daughter and I accompanied him to holiday gatherings there. Each time, halfway there, Tim would go into a rage. “You don’t really want to go,” he might accuse us. Or he might scold his daughter because she didn’t finish her homework. Eventually, in the death throes of our marriage, I refused to go. Tim went alone, and on the way back, just as when he fled the monastery, he stopped in at one tavern, and then the next. When he finally arrived home, he apologized for his relapse and vowed it wouldn’t happen again. But of course it did, and eventually I asked him to leave.

Tim’s ex-wife told me that the teaching brother Tim most trusted had molested him, but he never shared that with me. Instead, he repeatedly hinted that the teaching nuns and monks in the Catholic schools he attended from kindergarten until he was kicked out, had “done things.” He described inappropriate contact, but said it happened to a friend. He recounted physical abuse and beatings, but these anecdotes always implied he deserved it. The only part he did say, telling the same story again and again, was that he managed to get himself kicked out by hiding a bomb in the nuns’ car. And then he always laughed hysterically.

I listened to his stories until I stopped listening, and that is my loss. As reports of priestly abuse proliferated in the press, including at the schools he attended, I felt guilty. Surely, if I had pried forth Tim’s secrets, I could have healed him. Placing smoke bombs in the nuns’ car was his only cry for help, and in its way, it worked.

But to me, Tim’s descriptions of his father throwing shoes as his young son as he stood against a wall or dressing in a bear costume to scare him for leaving his bedroom at night seemed worse. I had little doubt that if young Tim had tried to say anything, his parents would have suggested he burn in hell. Even as he lay dying, helpless at last, they had him, a Buddhist, anointed with last rites.

During Tim’s final weeks of life, his daughter seized my hand. “No more blonde,” she said. I glanced at her. That week, her hair was the color of eggplant.

“What are you talking about, no more blonde? This is my natural color.”

“Not anymore it’s not.” She narrowed her eyes. The child I’d met at four, scared and mousy, had transformed into a striking beauty. “Brown, I think. Dark brown.”

After Tim and I separated, I dated a younger man, although we too soon split up. “Our love-making makes me insane,” he texted me. “I can’t do this without a traditional committed relationship. I feel empty and lost.” When I called to tell him Tim was dead, he wept. “Why are you crying?” I asked. “Not for him,” the young man said. “For you. For how much he destroyed you.”

“You don’t ever have to be afraid again,” my friend Carla said. Still, I sobbed and screamed.

“You abandoned a dying man,” my father said.

Eleven months after the McDonalds of bone marrow transplants, Tim died. Two weeks later, I landed flat in the New Year, widowed yet not widowed, with dark brown hair. I inhaled the scent of seaweed and salt from the bay outside what had been our dream home. I exhaled in cries like the call of the loons that gathered just offshore. The first day one pair arrived. The next day five pairs paddled in a loose cluster. By the end of the week, dozens of the arched spotted backs trolled up and down, up and down, on their quest for the Pacific herring that spawn here.

And startlingly, Tim’s walk in the park had killed him, and I was free. I walked with my dog in Northwest fog and rain, and to keep from shaking to pieces, I filled the bathtub with as much hot water as I could bear—a lot—and sat for hours. Water embraced me. Water was my solace. I descended into the tunnel of winter, days that rarely saw light, only changed from one kind of darkness to another. What about death, I wondered. What about suicide? Maybe I should just commit suicide slowly, one breath at a time. From the time of Tim’s diagnosis, I felt he wanted me to throw myself upon his funeral pyre. “When people grow ill,” his ex-wife said, “They become more of what they are. Nice people become nicer. Mean people get meaner.” M.F.K. Fisher says as we age, we revert to whatever we were like at birth and as toddlers. The final day of his life, in the ICU, Tim’s body bloated, and his skin stretched as far as skin can stretch, and it seemed he were drowning in his own fluids. Blood oozed from every pore.

My hands and arms went numb. Pens, notebooks, cups and forks dropped from my hands and crashed to the floor. “Definitely MS,” his ex-wife told me. “No doubt about it. You’ll be immobilized by the end of the year.” She seemed pretty excited by the idea. The symptoms worsened. I’d hold a cup of coffee to my lips, and then the cup would fall and shatter, the coffee scalding my chest. At other times, my hands balled up into tight fists, and I had to manually unlock them.

Just as I lacked a handbook for navigating Tim’s cancer, when I became a stepparent at thirty, I was equally clueless. Before Tim’s cancer was diagnosed and he was pronounced infertile, I pored through books on every stage of pregnancy, birth, and the developmental phases of a child’s life. When I became a stepparent, the pickings were sparse. Several books asserted never to allow the child to call me “Mom.” This would confuse everyone. My stepdaughter concocted elaborate stories about how I was actually her real mom. “Are you sure you were never pregnant?” she once asked. “Maybe when you were in rehab?” When I said I was sure, she said, “Maybe your mother had another baby she forgot about?”

As for cancer, the patient fought the courageous battle. And he never died. He passed.

After Tim died, his daughter asked repeatedly, “What are we to each other now?” She told me that everyone asked why she bothered to speak with me at all. As when she was little and asked to call me Mom, I remained obtuse.

“I am here for you no matter what,” I said. But I wasn’t. We were both on our own, stumbling through the forest without light or path, gauging where we were by the space between the trees.

K.C. Pedersen holds an M.A. in fiction writing and literature, studying with Annie Dillard as thesis chair. Stories and essays appear in numerous journals and have been nominated for Pushcarts, Best American Essays, and other awards. “Getting a Life-Coming of Age with Killers” was selected as notable by Hilton Als and Robert Atwan for Best American Essays 2018. Pedersen lives above a saltwater fjord in Washington State.

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Guest Posts, parenting

Toby’s Questions

January 28, 2019
toby

By Ruth Arnold

Last night, my 13 year old son came in my room looking sad, a little sunburned in the face and worried. He had that need-to-cry look so I said, “If you need to cry, I’m here. We can talk while you cry or I can wait”. He said with tears, “I just need to cry a little so I can talk.” I was in my bed watching tv with my dog and also feeling somewhat nervous about an upcoming event that I was fairly sure was the source of his needing to “cry a little”.

In two weeks, I am going in for a full hysterectomy. I am told via ultrasound examination and gynecological review that I have dermoid cysts on my left ovary. Dermoid basically means yucky stuff but not cancer. I am a breast cancer survivor so it’s very hard for me to separate the matters as the same hospital for this surgery was where I got my radiation treatments for my cancer. So, my fear is here. My brain knows it is irrational but my emotions tell me that that is the cancer place where you go at 6:00 a.m. every day wearing a wig so that you can make it to work on time on the other side of town, stay alive and not scare your students with a bald head.

“I’m just scared a little bit”. I said, “Me too but not because I won’t get through this. I’ve had that kind of scare before and this isn’t that”. Continue Reading…

cancer, Guest Posts, The Hard Stuff

An Irreverent Cancer Primer—Help Can Be a Four-Letter Word

January 10, 2019
cancer

By Mara Buck

“Nothing succeeds like excess.” Oscar Wilde
“Less is more.” Ludwig Mies van der Rohe
“Nobody survives like a smart-ass.” Mara Buck

Life is a combination of infinite causes and incalculable effects, each effect becoming the compilation and accumulation of its own unique history, yet stubbornly we continue to seek out the potential “easy-way-out-one-size-fits-all” solution. Unfortunately this seldom works—or works for long. We humans are tribal, invariably depending on the collective wisdom of the tribe to care for us, but no single answer proves the best answer for everyone.

There are no easy answers for dealing with cancer either—no rules. Cancer is as individualistic as the person whose cells are multiplying out of control, as distinctive as a smile across a luncheon table, as personal as a phone call in the night, as alienating as a closing door. Continue Reading…

beauty, cancer, Guest Posts

Accessorizing

July 11, 2018
chemo

By Annarose F. Steinke

At first the jewelry takes me by surprise: chandelier earrings, layered necklaces, sequined infinity scarves that have no business in a room where store-brand cans of pineapple and orange juice are the only drinks served. A big show is made of giving these things ample space on tiny end tables alongside Dixie cups of Tylenol. Companions are ordered to remember these silver hooks and spirals once the session ends, and in the meantime, to keep an eye on the table should the items’ owners need to use the toilet. Simply standing up while making sure to lift the arm so that the wrist retains the IV and the IV stays attached to the machine that must be wheeled into the bathroom while managing the door lock with the free hand, all while the first dizzy spell begins (no, thank you, I can manage) is such an all-consuming task that asking after your Alex and Ani bangles set in that moment is out of the question.

I used to wonder why they won’t leave these things at home, but now I know why all of it must be worn, even if only in the lobby. I recognize the sigh from the woman two seats down as she uncoils ropes of translucent orange beads from her neck: it matches my tone when telling the scheduling coordinator to hold as I shake out receipts and crumbs and broken pens from three different purses when I could just as easily store the Medical Record Number card in my wallet with my driver’s license and the other items anchoring my everyday. Now I understand that “fighting cancer” does not mean doing certain tasks with gusto but refusing to grant others the time and care they’re supposed to deserve.

As for me, I wear my great-grandmother’s rose gold chain, its sharp rectangles falling just below my collarbone and exactly where a chest port would be if I needed one. My grandmother’s accompanying note reads “I want you to wear her things. NOW!” and I honor her demand. Wearing this chain, I grasp the concept of a “statement” necklace: this piece states that I’m not here long enough for a chest port, this searing jab to my wrist is truly a perk of this good-kind lymphoma, and the nurse is visibly annoyed at the extra work so my demeanor had better be accomodating since my small veins are not. Continue Reading…

cancer, Guest Posts

Humane Treatment

December 11, 2017
humane

By Kimberly Maier

It’s either a cruel or humane twist of fate that I would end up with a sexy oncologist, I can’t decide which. He’s a fancy big-shot internist from the Mayo Clinic who moved to Oregon because he likes the outdoors or something. He has this absurdly charming strip of silver in the part of his hair. His voice is square, clinical. His mind seems to wander off while he’s talking, probably because he repeats the same boring death script to his patients every day. “The Oxaliplatin does tend to cause nausea, but I’ll prescribe something to alleviate that.” There’s a slight accent that I can’t place. He employs a strange downward intonation at the end of his questions.

He half-sits behind me, causing the sheet on the exam table to crinkle before tearing a v-shape in the paper between us. When I feel his breath on my neck my thoughts instantly liquify, spinning around the way soapy water in a coffee pot does when you rinse it. I clear my throat then open my bathrobe. At 26 years of age I am by far the youngest patient in the clinic and the only one who wears a robe, slippers and pajamas to each treatment. I can’t tell if everyone stares at me because of what I’m wearing or because I’m younger than the other patients by about 40 years.

The sexy oncologist puts his fingers in my armpits to see if my lymph nodes are swollen. They’re not. Continue Reading…

cancer, depression, Guest Posts

Where Are All The Silver Linings?

June 30, 2017

CW: This essay discusses depression and suicide. If you or someone you know needs helps now, you should immediately call the National Suicide Prevention Lifeline at 1-800-273-8255 or call 911.

By Melissa McAllister

Even before cancer, I was intimately acquainted with depression and anxiety.  We shared more than one dance together.  We fight.  We makeup.  We fight.  We breakup.  That’s just the way it’s always been.  On and Off.  I managed this relationship with an assortment of tricks.  There are the therapists I would purge all my thoughts and feelings onto weekly.  There is the pharmacy where I routinely picked up the latest antidepressant and anti anxiety pills I was prescribed.  Sometimes they even tossed  in a mood stabilizer or an antipsychotic for good measure.  And then there was the doctor who I checked in with on a regular basis to make certain all was going as planned.

As a person so prone to depression and anxiety, believe me when I tell you – keeping that many appointments and having that many interactions in order to procure those tiny little things that are going to hopefully help you feel better is fucking hard to do.  If you suffer from depression and/or anxiety, you know exactly what I mean.  But I managed, mostly. Continue Reading…

Guest Posts, Health, The Body

Why We Must Remain Vigilant: An Affordable Care Act Story

April 3, 2017
vigilant

By Jenny Giering

For me, the repeal of the Affordable Care Act is a life and death issue.

I used to define myself in various ways: a musician, a mother, a wife, a yoga devotee, a cook. Some friends (and my husband) called me the Energizer Bunny. Now: I am the poster child for Universal Health care.

The day I got my breast cancer diagnosis, I was in the process of re-certifying through the Massachusetts Health Connector (Massachusetts’ version of the state health insurance exchanges) for the following calendar year. My local Navigator, a local public health official trained to help with the application process, told me about Massachusetts’ Breast and Cervical Cancer Treatment Program, a Medicaid initiative designed to cover middle and low-income women through their treatments. We were relieved to discover I qualified. Our two children were simultaneously enrolled in MassHealth (Massachusetts’ Medicaid program) and their care became free as well. This was what saved our family from financial ruin. Continue Reading…

Guest Posts, The Body

Topography of a Scar

March 15, 2017
biopsy

By Krista Varela Posell

For four years, I’ve had a wound that won’t heal. A lesion is the technical term, according to Google.

It’s a dark spot on my right forearm, smaller than a dime. It could be just a mole. That’s what it looks like anyway.

But every few months, the skin around the spot will get dry and bubble up, almost like a blister. I try not to pick at it, but I can’t help it. Each time I do, I hope that there will finally be a pale white scar underneath so that I can just forget about it and go on with my life. Instead, picking at it just opens up another wound, like a door that leads to another door in some kind of eternal dream. There’s no bleeding, but the new skin underneath is sensitive, a deep rose color, and the spot scabs over. Then eventually the thin scab falls off, but the small dark spot is still there. Moles don’t do that, do they?

I don’t remember exactly when it started. I just remember looking down at my arm one day, perhaps it was in the car or in the shower, and I thought, that spot has been there a while. Weeks? Months maybe?

***

Soon after, I went to a dermatologist. Dr. Google had scared me enough into getting checked out. The doctor told me to stop picking at it and gave me a steroid cream to put on it. Come back if it doesn’t work, he said.

It didn’t work. The small dark spot still lingered, and the skin kept blistering. Continue Reading…

cancer, Guest Posts

Marked

February 24, 2017
tattoo

By Jude Walsh

I was nine when I saw my first tattoo. It was July in northeastern Pennsylvania and the first week of Saint Aloysius’ annual two-week church summer bazar. I was with my dad in the beer garden, a lattice work section decorated with swags of plastic greenery and potted plastic plants, located just a few steps away from the food tent. It was sheltered by a large tarp and had long counters set much higher than normal booths because their sole purpose was a place to rest your elbows while you stood while having a beer or two or three or ten.  This section was for drinkers but in the early 1960’s there was no problem with a little girl being there with her dad.

The art I spied was on a man who in my memory had big arms, what I now might call bulging biceps but then just thought of as big arms. It was deep blue and in the shape of an anchor. I could not stop looking at it.  Dad noticed me staring and said, “That’s a navy anchor.” I knew it was an anchor and now I knew it was a navy anchor. What I did not know was how it got on his skin.

“Who drew it there?”

My dad laughed out loud, “It’s not drawn on his arm, that’s a tattoo.” Continue Reading…

Grief, Guest Posts

Still Talking

November 21, 2016
death

By Susan Barr-Toman

A few months after my husband died, Patti Smith was coming to the Philadelphia Library to talk about her second memoir M Train, a collection of essays. I called Missy right away. Patti was our thing. I was actually excited about something. We had to go together. Missy had given me Just Kids a few years ago. I’d never been a follower of Patti’s music, but I loved her memoir about a lifelong friendship founded on love and art. The two of us had a mini-pilgrimage to NYC. We’d traveled to the Hotel Chelsea, which unfortunately was under renovations at the time, and drank a cocktail next door at the El Quijote, where Patti had hung out with Janis Joplin.

The library would be my first outing since Pete died. At this point, everything was hard—eating, shopping, watching TV, making phone calls, getting out of bed. I needed to look forward to something that didn’t require much of me. But even with this event that required nothing of me, I needed someone to be with me in public, among strangers.  The day before the event, Missy said she couldn’t make it.

When my husband was diagnosed with terminal cancer, people—those who’d experienced the death of a close loved one and the therapist I’d started seeing—warned me that death would change my relationships. Those who I expected to be there for me might not be. Others, unexpected, would be. Death affects people profoundly. Some people can’t be around it for an array of reasons. They’re afraid or they’ve just been through it themselves. And it turned out to be true. People I barely knew showed up and people I thought would be my core support did not.

Missy was one of those people. I’d imagined when Pete died that she’d practically move in with me and the kids. Instead, a few months before he died, she abruptly moved to D.C. for a new job. Of course, she hadn’t expected that she’d move in with me, and over the last few years, she’d taken care of her parents until they both passed on. She needed a new start; she’d had enough of death.

Without her, I didn’t want to go to the event. I was feeling a little devastated. But years ago, I had renounced the Catholic guilt trip. I would not make her feel bad in the hope that she would find a way to come. I said nothing. Continue Reading…

Guest Posts, healing, Sexual Assault/Rape

They Can’t Erase Our Voices.

October 10, 2016

By Domi J Shoemaker
I wish I could say that this thing I wrote after waking at 2:30am to take my pain meds and check my blood pressure after a hysterectomy that had only been performed so quickly because I benefit from the Affordable Care Act was an act of true inspiration. But it is more than that. It is also desperation. I have reached maximum capacity. I will tell you why.

After getting my surgery scheduled at the teaching hospital, I rolled across campus to an appointment that confirmed I would need a breast biopsy. The breast clinic did the biopsy two days later, and the .
day before my cancer surgery, a week ago today, and just before their gorgeous offices up on the hill closed for the day, someone giddy-sounding from the clinic called me and said,

“Domi, I am so happy to tell you the calcifications in your breast are benign.”

Now, with one week to go before my post-op appointment to find out the stage of cancer and whether they got all they needed to get, I listen to the presidential debate and hear that man say things like “Obamacare is a disaster. Just a disaster,” and I want to throw up.

This coming from a man who would surely try to shred me for the way I move through the world, the type of man I know all too well.

He is my old conservative “uncle” who put his hands and mouth wherever he wanted, on and IN my four-year-old body. He would zero in on the vacuum of need created in me those times when I saw my father rage at my mother and carry her down the hall by her throat.

He is my teacher when I was eleven, who carried me across the playground by my collar, with my feet kicking inches above the ground, desperate for purchase, just because I was cool-talking and called him Mr. Turkey like I was Vinnie Barbarino.

He is the man who, when I was twelve, called my mom for the hundred bucks we didn’t have to replace the passenger-side windshield of his split-windshield Dodge van aftermy feet had kicked it out, while his buddy tried to convince me not to climb back up the tree.

He is the man’s buddy who, with his hand on my thigh, tried to keep me in the van because I thought I had the power of a FLYING squirrel after he fed me PCP-laced Kool-Aid when I lied and said I was thirteen.

He is that man, when I really was thirteen, who rubbed up against me and said, “You have the most beautiful breasts I have ever seen,” when I was such a tomboy and had begged to wear cut off Levi’s and a T-shirt but got sidled with a swimsuit that pushed my breasts into the next area code.

He is the coach who, that following year, my first in high school, “hired” me to help coach the girls junior varsity basketball team. The coach who picked me up, when I was drunk, and he saw me walking alone at night. I convinced him to drop me off at a friend’s house with the promise of a kiss. He kissed me. With his tongue. I lost all interest in basketball.

He is the hundreds and hundreds of men who feel free to comment on my body whether in praise or in disgust and he is the woman who buys into that message that she deserves what she takes because she has given it for so long.

It isn’t a wonder that we all – at THE HANDS of men (and at the hands of women who follow their lead), who believe they have a right to use us at their will – have had to re-boot and readjust over and over just to be alive on this planet.

And here we all are. Speaking up! However we can.

I wish the piece posted below, which is only the 2nd thing I have written to its completion since starting all the health tests last January after an ambulance ride for what was a-fib likely due to anxiety, a symptom of my well-documented PTSD, PTSD at the hands of repeated early childhood (and beyond) trauma, were only MY story.

I feel fortunate to be alive and to have NOT killed anyone with this rage.

All that said, these words are meant to be a catalyst, not a masterpiece, because my words don’t need to be precious, they are meant to get shit done.

I wish this was just about me and my dearest friend, but it is the story of so many of us. To even pass this heinous man’s behavior off as “locker room talk” is to deny the fact that even locker room talk is designed to minimize the damage these putrid bags of bilious waste inflict upon those they treat as property.

#DedicateYourNoTrumpVote

INDELIBLE

By the time I was 6, I was at least 3 people.
I don’t know how it happened, to me instead of you.
How I split and split again and you, you had to swallow the rage.
While I grew big, then bigger, then bigger again,
You withdrew and went inside yourself.
I found safety is loudness, in bigness, and in bright!
You found solace in smallness and silence.
Our strength is born in sameness.
You at the hands of your father and me at the hands of uncle,
THE HANDS who grabbed us and groped us as though we were owned and grown to be consumed.
It is not just us, my love, it’s her, and her and him, and them,
THE HANDS, they they tried to erase us.
BUT WE ARE INDELIBLE.

#DedicateYourNoTrumpVote

And to honor the protector of those parts of me who helped me survive, I give you this-

p.s. “Listen, fucknuts, if you don’t want your rich white boys to pay for healthcare, stop creating the problem by taking whatever you want. That’s a goddamn coward’s way. Come talk to me about your excuses. See if you can earn it. I dare you.” ~Harley
And from the new me you see today-

p.p.s. Our bodies always move toward healing and homeostasis. As a species, this is how we have survived. This go-around with cancer and it’s friends, I have been using my body to create images and clips when I cannot find the words. All of the heart-shaped images are my own blood found on and in various pieces of clothing and furniture. That’s what endometrial cancer does. So I wanted to conquer my fear by calling the cancer out with images and representations of love.


#DedicateYourNoTrumpVote

Domi J Shoemaker is the founder the Burnt Tongue Quarterly reading series and they have been published in Pank Magazine, Unshod Quills, Nailed Magazine, Gobshite Quarterly, and in the Forest Avenue Press Anthology, The Night and The Rain and The River. You can hear Domi on KBOO radio’s Bread and Roses archives with Leigh Anne Kranz. Domi worries about being a name-dropping attention whore who did a scene with Fred Armisen in Portlandia. Just Google Pedicabs Are Douchebags, and it will come up. Domi’s grandest achievement aside from completing an MFA at Pacific University, is working with Lidia Yuknavitch since 2012, and is currently co-facilitating the seasonal face to face workshop series, Corporeal Writing with Lidia Yuknavitch.
Join Lidia Yuknavitch and Jen Pastiloff for their signature “Writing & The Body” Retreat in Portland March 17-19 by clicking photo.

Join Lidia Yuknavitch and Jen Pastiloff for their signature “Writing & The Body” Retreat in Portland March 17-19 by clicking photo.

 

Click photo to read People Magazine.

Click photo to read People Magazine.

cancer, Guest Posts

Uterus Of My Discontent

July 10, 2016
cancer

By Lillian McTernan

The first night in a new apartment is almost always weird for me: leftover adrenaline, my fanatical desire to get unpacked, and the disorientation of being in an unfamiliar environment usually join forces to give me serious insomnia. Given this long-standing trend, my first night in the apartment I moved into in 2010 with my then-boyfriend — the man who quickly became my fiancé and is now my husband — stands out as a huge anomaly.

That night, I quickly fell into a deep sleep. I dreamed that I was walking into the kitchen of our new apartment to get some water, only to run into a little boy. Startled, I asked who he was. “I’m your son!” He said happily.

“Oh,” I replied in bewilderment. “What’s your name?” (I felt like a jerk for not recognizing my own kid, but I also wondered where, exactly, he came from.) Continue Reading…

cancer, Guest Posts

The Shape of Legs and Love

March 30, 2016
cancer

By Isabel Abbott

This is what we do now. It is late, and I am in bed, and the lights have long been flicked off along with the day’s clothes which pile in the chair or a trail from front door to white sheets. I am in bed, and I am listening to the sounds outside, locating each one and giving it a name.  (Feral cat, two cars passing, a back screen door banging, a low hum of talking while a cigarette is smoked.)

I am listening and I am naming.
I am wanting to sleep.
I am hurting.

There is the slight adjustment, the shift from one side to the next, my left hip a glaring road sign pointing toward the placement of origin for pain. And so this is what we, me and my legs, do now. We lay here, in bed, and at night, unable to sleep, I begin to envision the bones inside, the lock and socket, the strong and soft, the words I imagine are engraved on them, transcribed from all the years I’ve spent walking through the world and street and unmarked alley. All the skin and muscle and bone, the extension and the wrapping around her, the running and running through the woods and the cuts into skin that bled out poison and suffering, the tethering to this earth and the curve of calf when feet slip inside shoes that take me home. Continue Reading…

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