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Chronic Illness, chronic pain, Guest Posts

Hysteria & Me: An Ancient, Misogynistic Disorder is Killing Women

September 27, 2020
SYMPTOM

By Elizabeth Land Quant

On a December morning in 2017, I woke up face down next to my treadmill. The week before, a rheumatologist at Cleveland Clinic had diagnosed me with fibromyalgia, which she described as an “exercise depravation syndrome,” and told me that aerobic exercise would help my symptoms. “As long as your heart races a little and you sweat,” the doctor’s handout advised.

Now, as I lay on the floor, my heart raced like a trapped bird banging against my chest. I couldn’t take a deep breath. My pants were wet, from urine and sweat, and the nerves in my hands and feet were burning. I needed to throw up. Between the gray-tinged double vision and shaking in my legs, I couldn’t stand up, so I crawled across the floor and slowly pulled myself up the stairs.

After cleaning up my vomit, I vowed to follow my doctor’s advice and try even harder. Her handout said: “First, it is very important to know that even if the pain is worse after exercise, no injury to the body occurs.” But the next day when I tried to exercise things got worse. As the days wore on, I was unable to chew food. My neck muscles would not support my head, and I had to drink my dinner though a straw with my husband’s help. My chest hurt with every breath. I was incontinent, and my intestines became immobile. The burning in my hands and feet got so severe I couldn’t wear socks or gloves. My anxiety and depression were no longer controlled by my meds. I developed double vision and my left eye sagged. I couldn’t take care of my family anymore, or myself.

My husband worked a fulltime job, and we had three teenagers with medical and school needs. With my mother’s and sister’s help, we cobbled together a way to keep everyone fed, up on schoolwork, and attending most doctor’s appointments. Our daughter ran errands for the family after she got off work. My father-in-law picked up our boys from school as much as he could, with Uber as our back up. Dinner was made by anyone who had time that night, or we ordered. I missed countless school events like my son’s football games and my daughter’s high school homecoming coronation, memories we should have made together. I was so thankful that we could get by, but I constantly felt like a burden and a failure.

To get help, I traveled from my home in Minnesota to the Cleveland Clinic with the hope of finding answers for these symptoms. I chose this clinic because its website advertised  a clinic that works “collaboratively with multiple consultants and departments.” But instead of finding answers, after I told her that some of these symptoms had started in childhood, my rheumatologist focused her questions on whether I was traumatized as a child. I didn’t know it at the time, but the rheumatologist that I was seeing is a renowned expert in fibromyalgia, and was head of the Fibromyalgia Clinic at Cleveland Clinic.

“You’ve got severe fibromyalgia. I’m recommending intense psychiatric rehabilitation,” she said.

I found out years later that this rheumatologist conducted a study on how past abuse can indicate the severity of fibromyalgia. Her conclusion was to “recommend that abuse should be inquired about in all patients evaluated for FMS as this may give more clarity to the nature and severity of the FMS presentation and prompt the need for psychological interventions.” This doctor also recommended that severe fibromyalgia patients should not be evaluated for other diseases.

Soon after, back in Minnesota, I was erroneously diagnosed with somatic symptom and related disorders (SSRD), a psychiatric condition that is “characterized by an intense focus on physical (somatic) symptoms that causes significant distress and/or interferes with daily functioning.” They claimed my symptoms were caused by a mental illness and not a physical disease.

For decades, my anxiety, depression and physical symptoms had been attributed by doctors to my own actions. For instance, I was told by a gastroenterologist that my inability to swallow food and my intestinal motility issues were most likely brought on by limiting certain foods from my diet, like gluten and dairy (but if I ate those foods, I got hives and threw up). Other doctors said that my symptoms were present because I “worked and exercised too much and didn’t rest,” or that I was “resting too much” and became deconditioned. I was scolded for being underweight. I was scolded for being overweight. I focused too much attention on my kids and not enough on myself, causing unneeded anxiety. Another doctor said that I focused too much on myself by meditating and googling which vitamins to take, causing an unhealthy obsession with my health. I was told that I just “didn’t like getting older” and was depressed about it. So, all my physical problems – double vision, throwing up, falling down, urinating all over myself – were my fault, and all my therapy sessions, meditation, medicine, exercise, and healthy diet weren’t helping nearly enough, and somehow were making me worse. I had wondered if my kids and husband would be better off without me.

***

I started researching my new diagnoses, and found out that the diagnostic criteria for fibromyalgia and SSRD placed a red flag on patients, primarily women, who have multiple symptoms. Because I fit the criteria for these two diagnoses, I was no longer a candidate for further testing or referral to other specialists. An article in the American Academy of Family Physicians’ magazine states that SSRD “should be considered early in the evaluation of patients with unexplained symptoms to prevent unnecessary interventions and testing.” With approximately 12 million US adults misdiagnosed every year, and women and minorities 20 to 30 percent more likely to be misdiagnosed, how many women are having their “unexplained symptoms” dismissed as part of a somatic illness?

How did we get to this point in the twenty-first century where women are still repeatedly dismissed and misdiagnosed? Women are less likely to be administered pain medicine than men in emergency room settings. Women have a 50% higher chance than men of getting an incorrect diagnosis after a heart attack, and they are 30 % more likely to have a stroke misdiagnosed. Black women and other women of color face even larger disparities in the health care system compared to white women because of racial bias and discrimination. Stigma and discrimination against Transgender people limit their access to healthcare, negatively affecting their mental and physical health. A study “Women With Pain” found that “women with chronic pain conditions are more likely to be wrongly diagnosed with mental health conditions than men and prescribed psychotropic drugs, as doctors dismissed their symptoms as hysterics.”

This brought me right back to college, where a professor asked the question “what is the Greek word for uterus?” When no one answered, he paused for a dramatic beat, and then said, “Hystera. Where we get the word hysteria.” As the women in the class shifted lower into their seats, the men laughed, loudly. There even was a celebratory high five. I will never forget the absolute mortification I felt, and how instinctively I hurried to cover my scars under my shirt from multiple endometriosis and ovarian cyst surgeries. I felt betrayed by my own body.

***

In ancient Egypt, Greece, and Rome, hysteria was considered a women’s condition whose physical symptoms were thought to be attributed to a wandering uterus. Over time, the blame of these various hysteria symptoms shifted from a physical cause to a mental one. In the late 1800’s, the psychoanalyst Sigmund Freud posited that a woman’s psychological stress “converted” into physical symptoms that caused a hysterical state. Also during the Victorian Era, new diagnostic terms like “Briquet’s Syndrome,” named after French physician Paul Briquet, were given to women experiencing hysteria symptoms such as nausea, dizziness, fast heartbeat, pain all over, blurry vision, and weakness. Briquet’s Syndrome was renamed somatization disorder, which eventually became somatic symptom and related disorders. Hysteria was officially removed from the Diagnostic and Statistical Manual of Mental Disorders in 1980, but the stigma of a woman’s illness with a name meaning “melodramatic or attention seeking behavior” still remains.

***

At numerous doctor’s appointments, I was given the Patient Health Questionnaire – 15 (PHQ-15), a tool frequently used to diagnose fibromyalgia, SSRD and multiple mental illnesses, which has symptoms that are also associated with diseases that primarily affect women. The tool listed 15 symptoms and a rating scale of how severely these symptoms affected your life. Each time I checked off most if not all of the symptoms listed, including chest pain, fatigue, heart pounding, nausea, pain, shortness of breath, and stomach pain (refer to chart for complete list). In filling out the PHQ-15, I thought I was helping the doctor get closer to a diagnosis and treatment. Instead, I was checking off a list of “somatic symptoms” that pointed them away from a physical illness and toward a psychiatric disorder like SSRD. Small fiber neuropathy, autoimmune disease, ovarian cancer, autonomic dysfunction, heart disease, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Ehlers-Danlos syndromes, and now long-term Covid 19, conditions that affect millions of women, all have symptoms listed on the PHQ-15, and on screening questions for fibromyalgia. Another devastating problem with this set up is that more and more women are afraid of speaking up about their mental health symptoms, like I was, for fear of their physical symptoms being overlooked, or labelled as psychosomatic.

Women with mental illness, and I include myself in this group, are at risk of their mental health diagnoses being used as a red flag, halting the diagnostic process of their physical symptoms being looked into as part of a physical disease. More than 1 in 5 women in the US have experienced a mental health condition in the past year.  In our modern understanding of mental health, we believe that physical symptoms often manifest as a result of a mental health disorder. The problem is not that doctors identify mental health disorders as one potential cause of physical symptoms. The problem is that those same physical symptoms could also be caused by a number of physical diseases. This is the point where the effective process of a proper diagnosis breaks down. Instead of testing and ruling out physical disease, many doctors jump to the assumption of the absence of physical disease. Having a mental illness does not make us immune to having a physical disease.

Seventy-five percent of Americans with autoimmune disease are women, according to the American Autoimmune Related Disease Association and it takes on average three years and four doctors to get a diagnosis of an autoimmune disease. The study “Frequency of Symptoms of Ovarian Cancer in Women Presenting to Primary Care Clinics” shows that even though 89% of women with early stages of ovarian cancer have a distinct set of symptoms (bloating, abdominal pain, urinary symptoms, fatigue, back pain, constipation) that they report to a doctor, “only 20% percent of cases are caught in an early stage.” How many of these women were dismissed by their doctors because their symptoms fit a somatic illness or were written off as general reproductive issues that halted further testing?

***

About a month after the Cleveland Clinic appointment, my family and I went on vacation in Florida. I almost didn’t go, but this was the only time we could coordinate a trip with all five of us. I spent most of my time in the bathroom, throwing up sips of water I kept trying to swallow. I took anti-nausea meds, Tylenol, Ativan and Imodium to sit with my family by the pool, until I would have to lie down on the bathroom tiles again.

By the time we flew home, I was severely dehydrated and doubled over in pain, but refused to go to the ER for fear I would be accused of faking my symptoms for attention or told that this was my fault and I needed to exercise more. My husband begged me to go in, and it was there that a doctor first mentioned “autonomic disorders,” and autoimmune nerve diseases that could be causing my various symptoms. When I got home from the hospital after getting IV fluids, I looked up my medical records from Cleveland Clinic. The doctor who diagnosed me with fibromyalgia wrote in my appointment notes, “has not been diagnosed with small fiber neuropathy,” a disease that could explain most of my symptoms. It would have been so easy for this rheumatologist to refer me to one of the few nerve labs in the country for a biopsy, right in her same clinic.

***

The diagnosis of fibromyalgia has helped many women get symptom relief and disability services, but has also prevented countless women from receiving a correct diagnosis. Studies show that half of fibromyalgia patients are thought to have small fiber neuropathy, a disease that Johns Hopkins describes as damage to the peripheral nervous system, the nerves that send information from the brain and spinal cord to the rest of the body. This damage can cause symptoms ranging from pain, to gastrointestinal issues, to difficulty breathing and an irregular heartbeat.

Fibromyalgia shares many of the same symptoms of small fiber neuropathy (SFN), but the main difference is that SFN can be definitively tested for and treated, whereas the underlying causes of fibromyalgia are unknown and treatments only address symptoms. A quick and painless skin biopsy can confirm the SFN diagnosis, and if positive, further diagnostics can find a medical cause of the neuropathy in the majority of patients. Prompt treatment can prevent further damage to the nerves, and in some cases, the medical cause of small fiber neuropathy can even be cured.

After researching my symptoms, I convinced an open-minded neurologist in Minneapolis to conduct testing including a skin biopsy and a tilt table test. The biopsy revealed severe small fiber neuropathy, and further testing found Post Orthostatic Tachycardia Syndrome (an autonomic disorder that affects heart rate, blood pressure, and causes many other symptoms). I was also diagnosed with Myasthenia Gravis, a progressive, potentially life-threatening neuromuscular disease which can be fatal with too much exertion (so much for “even if the pain is worse after exercise, no injury to the body occurs”). A year later I was diagnosed with a hypothyroid disorder and asthma, both of which I was told I have had for years. I could not have fought for and received the right tests if I didn’t have a good health care plan, time to research, and money to pay for thousands of dollars of out of pocket costs.

I had missed out on so many of my kids’ events, as well as countless birthdays, anniversaries and holidays. If I had been given a tilt table test or a nerve biopsy instead of being continually misdiagnosed, maybe I could have started the right medications and been more present in my children’s lives while they were still growing up.

***

Being disabled itself doesn’t upset or scare me. I learned that I can live a full and happy disabled life by watching my father work and travel the world with his portable oxygen tank in his backpack. I’m angry about all the time I wasted blaming myself for a disease that was not my fault and all the years fighting for tests and medicine that could have slowed down or stopped the progression of these diseases. However, I am privileged to have the resources I need to live a comfortable life that allows me time to take care of myself.  It is unacceptable that in this country only well-to-do people with disabilities are able to live comfortably, while so many people are forced to fight to obtain correct diagnoses, assistance, adequate health care and safe housing.

When doctors are taught to hold back diagnostic testing based on the number of symptoms a patient has, and considering that so many illnesses that affect women have multiple symptoms, including potentially deadly ones like ovarian cancer, it’s not hard to understand why so many women have been misdiagnosed.

Elizabeth Land Quant is an autistic, queer, disabled writer, wife, and mom to three grown kids, two cats and a very spoiled dog. She studied Latin, Greek and political science at St. Olaf College, and splits her time between Minneapolis and Hot Springs, Arkansas. She researches and writes about her experiences with disability, autism, family, and her undying love for TV. Elizabeth writes poetry, fiction and nonfiction and is currently writing her first novel.  She has been published in Disability Acts.

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Family, Guest Posts

Unstuck

September 24, 2020
tub

By Sherry Shahan

I am ten. Sitting on the edge of the porcelain tub while my mother paints on cat-eyes.

It is not enough to watch her in the refection of the tri-fold mirror. I want her to turn around.

Sherry Shahan is known for her adventure-based novels for teen girls. Her work has also appeared in the Los Angeles Times, Oxford University Press, Exposition Review, Backpacker and others. She holds an MFA from Vermont College of Fine Arts and taught a creative writing course for UCLA Extension for 10 years.

 

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Divorce, Guest Posts

She Cannot Make It Out

September 22, 2020
water

By Stina French

He isn’t grieving but she imagines him grieving. Maybe he’s grieving. She dreams he is talking to others about her as if she is dead, though they are only divorcing. He says she loved the moon. She loved the moon so much she told our daughter her first word was moon. Though it maybe wasn’t. It made for a good story, and she loved a good story. A lot could be spared with one good story. He says she loved to swim. She loved to swim so much everyone said she was a mermaid. She loved the moon and she loved to swim so much that sometimes she would swim in the ocean at night. He says I was never so brave. He says she cried and cried. Sometimes she cried so much I thought the water she swam in was her tears. She knows he is no poet and would not speak this way.  But maybe in her dreams he is a poet. Maybe he would speak this way if she were dead.

In the dream, she is swimming in a vast sea cave. Other women swim with her. Some girls, some grown.  One watches her jealously or with desire. One doesn’t watch her at all, a small girl. Not her daughter but someone else’s daughter. Someone else’s mother, maybe one day. Surely, she will cry waters of her own making. Some breaststroke in straight lines, some backstroke in circles. This is what they know to do–to cut the water with their bodies. To make the water with their bodies.

She cuts the water with her body as if she could swim a story across and wide.  A story she could live inside. He is on the shore saying I wish I knew what to do. I wish I knew how to help her stop crying. And she is shrinking now hearing these things. She would rather hear him talk about her love for the moon again. The way she is cutting the water with her body. He is holding their daughter. Their daughter she made herself with her body.

The daughter is laughing. He has given the daughter this, and she has given the daughter story. Story does not come without cost. Laughter is free and easy, as he is free and easy. She wonders why she wants him so badly to sink. And though he could not keep her afloat, he wants her there on the surface. He would not begrudge her a view of the moon, from any angle. He wants her alive and happy even if it means swimming alone without him under the moon at night. He does not understand the ocean under the moon at night because the things in the water at a certain depth scare him. He is on the shore saying more things about her as if she is dead, but it is so far now and she cannot make it out.

Now, there is only the story of water. It sloshes, dividing and rejoining. When she left him, maybe she was just parting the water. Maybe all these bodies in the water are parts of herself dividing and rejoining. Water fingers her hair, tugging tendrils into rays, a corona wet and waving. A crown for the Queen of the Unconstituted, Beloved Dissolved. Fluid surrender, shapes spells the moon could cipher if it were watching. Her pulse beats blood in ear canals, her red tide internal. She dreams she is not dead, only swimming. Only swimming beyond bereft, beyond the leaving of a life.

Stina French writes mystery, magic-realist memoir, flash fiction, and poetry. She has featured in many venues in Denver and Boulder, Co., and her work has appeared in Heavy Feather Review, Punch Drunk Press, and on the podcast Witchcraftsy. She is scratching at the window of her body, writing poems like passwords to get back in. To get forgived. To get at something like the truth. To get it to go down easy, or at all. She wears welts from the Bible Belt, her mother’s eyes in the red fall. She’s gone, hypergraphic. Writes on mirrors, car windows, shower walls. Buy her a drink or an expo marker. She’s shopping her manuscript, Also Arc, Also Offering, a Southern-queerdo memoir in flash non-fiction and verse.

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Family, Guest Posts

Tossed To Order

September 20, 2020
cassandra

By Catherine Bourassa

Monday is the busiest day of the week at our sandwich/salad cafe. Part of me thinks we are so busy because we make amazing tossed to order salads, the other part thinks people are just doing the “I’ll start on Monday” thing of getting back on a healthy track after a binge filled weekend.

My husband manages the kitchen and the office, and as they say in the restaurant business, I manage “the front of the house”. I think of our relationship at work as “good cop” “bad cop. I have difficulty with confrontation. I am a pleaser and my spine has yet to fully develop. When situations arise (a customer complaint, or an employee reprimand) I call on him to handle it. When a staff member is crying in the bathroom because her boyfriend just broke up with her, he counts on my caring touch to deal with it. I am the greeter, the schmoozer, the cashier, the meditative, mindful, face of the business. I care.

The cafe has a clean minimalist look. Its rectangular shape is lined with fourteen chrome stools for counter seating. Amber colored glass pendulum lighting fixtures contribute to the contemporary vibe. When customers come in for the first time they look at the rainbow garden through the glass shield as if they were in a museum. I feel a sense of pride as I watch them take a slow investigative walk observing the freshness. I tell our staff, when you are making a customers salad they are watching your every move. This is theater. Never let them catch you out of character.

This is a typical Monday and where you place your order, a line is starting to form into the shape of a horseshoe at about 11:30 am. The regular customers know the drill and quickly fill out their salad forms, the new ones wait for one of us to give them the spiel.

“Name goes at the top”

“Check off all the items you would like”

“Dressing tossed or on the side”

“We will call your name, and you pay at the other end.

***

The austere decor of the cafe is not synonymous with the clientele. 

Linda is a loud talker and a vegan. She has a different story daily about her disdain for meat eaters.

Curt wears navy blue dickies and a work shirt and always orders roast turkey on a roll with cranberry mayo. He shows us pictures of his grandchildren in Florida. He gets pissed if you forget to give him a receipt

Bill thinks avocados are “bullshit” and doesn’t get the point of putting them on or near anything.

Jake entertains us with stories from his weekends. We tease him that he is too old to be participating in things like Santacon!

***

It is now about 12:30 and there is a sea of customers all looking down at their cell phones waiting for their names to be called. I am running the register and calling their names. 

I yell

“Cassandra!”

A cute twenty something year old wearing nursing scrubs and full sleeve tattoos steps up and I ring up her salad.

“That will be $10.05 thanks have a wonderful afternoon”

Next order up is a sandwich and the ticket has the name Cassandra written on the top. I feel a quick flutter of panic. and three thoughts dart through my brain 1) Oh shit she had two things 2) there couldn’t possibly be two people named Cassandra in one place 3) she is already out the door.

At that moment the other Cassandra steps up to the register.

She is not cute.

She is stiff and pressed in high end clothing with a Louis Vuitton bag that could house a small family. She is annoyed at the lunch time crowd and just realized that the other Cassandra has left with her lunch. 

I said “Hold On”

I run from behind the counter into the parking lot like a Marvel Superhero screaming “CASSANDRA, CASSANDRA, WAIT” as I flag her car down.

She stops, rolls down her window and casually says “whats up” not sensing my sense of urgency.

“Did you order a salad or a sandwich?”

A sandwich. Why?

“Because you took a salad ( now I think cute Cassandra possibly smokes a little weed on her lunch break) Can you please come back inside for a second.

“Oh, sorry. No problem.” she said

I’m now again standing behind the register looking all cattywompus after my heroics, with the two Casandras in front of me. Cute Cassandra is patient and understanding while I try to figure out how to do a return on our recently updated registers. Not cute Cassandra is pissed.

She says to me with tight pursed lips

“You would think the person that they let run the register would know how to use it” 

I felt embarrassed and verbally assaulted and dumb. I wanted to say “Fuck You!” Not Cute Casandra. Can’t You See We Are Slammed In Here And We Don’t Want To Serve Mean People!” Of course I didn’t say those things because there is Yelp and Google and Trip Advisor and I practice mindfulness. All was resolved in a matter of minutes with both Casandras getting their correct lunches. I had a lump in my throat and was on the verge of tears. 

I joke about meditating and practicing mindfulness but I really do both. It is not easy. It is a constant practice and working with the public gives me plenty of opportunity to practice. The Metta meditation which is the cultivation of benevolence or  “loving-kindness meditation” has given me strength. You recite phrases such as ‘may you be happy” may you be healthy, may you be peaceful, may you be free from inner and outer harm. You extend these thoughts first to yourself and then to others. It is a little gift that I give to our customers that they are not even aware of as I ring up their order. A free parting gift of positivity.

Two weeks later “not cute Casandra” came in for lunch and it wasn’t busy. I didn’t think she would ever come back, but here she was. As I rang up her salad at the register I asked her how her day was going. She seemed less stiff, less hurried, less mean. I wished I had taken the time to practice loving kindness  with her the last time she was in the cafe. I felt a softening toward her. I think I may be more than just the face of the business I might be the heart as well. I care.

Catherine Bourassa lives in Connecticut where she owns a catering business and small tossed to order salad cafe with her husband. Catherine reads and writes in her spare time. Though they had to close their cafe initially, it is now open, check out the delicious menu. This is Catherine’s first published piece and we are thrilled it is with The ManifestStation!

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Alcoholism, Guest Posts, Relationships

Fix It

September 17, 2020
bar

By Dan A. Cardoza

It’s never a good thing when you fall in love in a bar.

Especially a treasured sleaze bar where the music is so good and loud the military uses for psychological warfare.

If you love the taste of liquor, as we do, everything that means something is here. Conversely, everything and everyone you love, here, will disappear if you get healthy.

Later that night, at Emily’s we can’t wait so we make love in the back seat of my car she lets me park in the garage. At some disjointed intersection, we end up in the front again. My dash clock pulses 2:30 P.M. It’s the next day. We wake hot and sweaty. She laughs until she nearly pee’s her pants when I share my dream.

“So I’m driving in South France. Vincent Van Gogh is riding shotgun.” I say. “He asks for a tune with stars or wheat. When I play Sting’s, Fields of Gold, I catch him fussing with the bloody gauze on his ear while he falls into a deep sleep. Then I wake up.”

Emily screams, slams the car door and races toward the bathroom.

In the late afternoon, we share a late breakfast of Bloody-Mary’s, eggs, toast, and Italian sausage. If you can believe it, we actually script the next seventeen years of our life. Right up until the wheels fall off.

Getting high brought us together, and tore us apart.

~~~

Being an alcoholic is a young man’s game. It’s when you are too strong and most self-deceptive. I’m in my early 40s’ now, going on 50. Burning dynamite from both ends can do that to you.

My boy and girl need more than a mom and dad that fight a lot, shitty dinners and absentee parents at their school’s open house.

~~~

Emily is angry when I join AA. As for me, I am embarrassed for being so weak, but the group says it’s actually a sign of strength. Apparently, courage is when you cough up blood and throw in the towel.

Everyone on the planet knows about twelve steps. The part I fear the most is about the pain of waving goodbye. Goodbye, to every last fucking thing that gave me a reason to live. Soon after I join, Emily begins cheating on all of us, isn’t present for the kids. She says, “I don’t love you anymore.” She’s a liar when you really love you know each other like that.

What I fear the most has started: the loosing friends, taste, giving up cigarettes, even my rusty laughter at the jokes that weren’t so funny, drunken family and friends. My sponsor put it this way, and he’s no genius, so I can relate, “You have to fix it, son. Your boat is sinking. Just keep bailing the damned water.”

Unfortunately, to save all of us someone had to jump. It was Emily. It broke my heart when she filed for divorce as if I needed anything else broken. That’s when I almost give up, give in. Quick solutions become cravings. Jesus, we were still in love.

At the grocery, loud 90s’Karaoke replaces the intercom’s 60s’ classics. Customers lob cans of beer and whiskey at me like hand grenades, just for reading the labels: clean up on aisle seven please? Someone dropped a bottle.

At work, hidden cubicle doors wag thirsty hinged tongues. Each attached to empty vaults, haunted by distilled spirits.

At home, my Emily infused walk-in takes on the seductive smell of Paris alleyways.

Late nights with the kids in bed are the worse. Suicide guns wait impatiently in drawers and cupboards.

At times I feel crazy, as I endlessly stare at my favorite whiskey carpet stains and the burns from Camel cigarettes, like lovely footprints of extinct creatures.

Before morning, something allows me to catch a few hours of sleep, even though I wake in a pool of sweat and twisted sheets.

~~~

Emily got remarried, after five destructive years of letting go. She and her new husband met at a company picnic. For what seemed the longest time, they quit drinking. I think it was for two months. She had good medical insurance though, through his office plan. It covered all of her expenses when she eventually bled-out at Kaiser. That’s what they call it when your soul oozes from your insides, into your abdomen.

We never see her Ex, at the cemetery, when we leave her bottles of roses.

~~~

Four years have passed since I lost Emily for the last time. She would be proud of me if she’s not drinking.  My religious friends say if you pray enough, heaven is an open bar.

I have both kids in community college. It’s just a start, but that’s all I can afford right now. They are so smart, I’m sure they will qualify for state scholarships.

~~~

For the first time in years, I can relax in bed with the window open. It’s early morning, when the wounded hunt. I look out at the glassy moon. It’s still so damned confusing at times, the moon. But now I’m able to tell the difference between waxing and waning.

Someday I hope to convince myself it’s always waning, and that hanging onto the sharp edge of the crescent is worth it.

Dan A. Cardoza’s fiction, nonfiction, and poetry have met international acceptance. Most recently, his work is featured in, or will soon be featured in the 45th Parallel, Bull, Cleaver, Entropy, Five on the Fifth, Gravel, Literary Heist, Montana Mouthful, New Flash Fiction Review, and Spelk.

Anti-racist resources, because silence is not an option.

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Compassion, Fertility, Guest Posts

The Mindful Mother – When are you having a baby?

September 15, 2020
question

By Denise Castro

I recently attended a lecture on mindfulness a few months back and it stopped me dead in my tracks. I learned from our professor that about 46% of our mind wanders when having a conversation. As I write these words I am already going down my to-do list of work, dinner, laundry, mismatched toddler socks and back to these words. Our professor collaborated in neuroscience research that explores the efficacy of mindfulness training on attention, emotional regulation and working memory in high stress professions. He draws upon this expertise in the infusion of mindfulness into the learning environment. As a new mother I am constantly learning about what it means to be me in this new role in addition to the various roles I have played before. My mind wanders even more now that I am a Mother. I realize that I tune in and out of conversations because I am trying to constantly multi-task and cram all the things I need to do in a day which really can lead to program overload. Think Sad Mac symbol used by older-generation Apple Macintosh computers with the black screen of death. Followed by the little annoying horn that you just want to curse out. You keep clicking incessantly, nothing. Okay, time to re-boot. And sometimes that’s necessary. Forcing yourself to re-boot and or even shutdown. Command-Option-Esc.

I considered myself rebooted when I attended this Mindfulness lecture. It purposely brought my attention to experiences occurring in the present moment without judgment, and allowing true reflection on my life altering occurrences. I remember mine in that very moment. The voice came and it said Denise – when are you having a baby? I know exactly this person’s voice, the intent behind their question and eyes searching for an answer. Perhaps the voice is merged with mine re-asking the question. The question still remains unanswered. When are you having a baby; always seems like the question your waiting for your biology to answer. “Presently Kendra, my husband’s sperm is pinpointing the egg from the ovulation cycle that I semi tracked and will have 7-28% chance of fertilizing the egg. Will forward you the meeting minutes of that event ASAP”. Did that answer your question? Is that a satisfactory answer? Or simply put whenever the hell my husband’s sperm wants to hook up with the egg. Period. However, instead we always answer cordially with “oh, who knows, maybe soon, we will see what the future holds”. However, what we really mean is it’s none. Of. Your. BUSINESS followed by slight spike in blood pressure, mild twitch to the eye and excusing yourself to the bathroom so you can scream a couple F bombs out loud. The truth behind this question has a multitude of repercussions within our subconscious.  I would know because I once asked a Mother this question. Not being one yet myself I realized it’s actually a really intrusive question. It’s not asking about where she got her cut and color done? It’s so private and deeply personal. To that Mom – I am sorry, I just didn’t know what I was asking.

Sometimes friends and family will ask this question very candidly in an – as- a-matter- of- fact kind of way. I must’ve heard this question a million times for almost a period of two and a half years. When are you having a baby? Perhaps I should’ve written a rap song in response “When are you having a baby – featuring NUNYA – None of your Business Inc. I swear if I had a money jar for every time it was asked I’d probably be a millionaire by now secretly cursing and smiling under my breath. The truth is, that it hurts. That question hurt me. It hurt my very core and it still hurts. When you have a miscarriage this question is your worst enemy. It menaces you like a dark figure in the corner waiting to punch you in the gut. I had been punched several times until no breath was left inside of me. Just when I thought I had recovered it’d be inserted somehow in a conversation that was totally unrelated. Nobody would know that I had miscarried my first baby and had chosen to keep this information to myself as a way to cope and the memory still haunts me.  So when asked, it was as if lightning struck; allowing electric shocks to travel to all the nerve endings in my body and a finishing blow to my heart. Now, this question may pose no immediate threat except- have you ever considered that this person may already be asking herself this question over and over again. Why turns into when, when will it happen turns into what’s wrong with me, and then back to how am I going to answer the why is this happening to me. This turns into a vicious narrative that leave us emotionally depleted and unable to answer. No one in particular may ask you anymore but it doesn’t mean that it stopped it from triggering the auto-renewal of these questions to yourself. It’s like that subscription you never signed up for. Reappearing is our Sad Mac symbol with the little pop up window that reads “When are you having a baby?” Now it’s multiplied into a million damn windows; followed by the super annoying prompting horn. Yes or No reads the little window? F#*@#*# just STOP. Go away! You click incessantly; nothing.  Command-Option-Esc. Shut down. Reboot.

Being mindful of ones journey is so important; I can’t stress it enough. So stop yourself before asking this question. Our emotional regulation is similar to the lines on a seismic chart after an earthquake, erratic upward and downward lines mimicking our fluctuating feelings on the verge of collapsing. We need to train our attention to body language; and being a silent but present comfort to women who may be navigating this period in their lives. Finding a sense of normalcy and peace during the period of conception was one of the most challenging things ever. My mind was like a radio with too many talk show hosts talking over one another essentially asking the same thing. My husband silently watched me month to month doing the math in his head for any signs of a missed period and/or ovulation kit purchases. He never asked the question and I wholeheartedly appreciated it. His silent understanding is what we needed to get through this – together.

At some point we may be the woman at the baby store sobbing into a baby blanket and cradling it when she only meant to get a quick gift for a baby shower, the woman staring at the trash can questioning the three ovulation sticks with smiley positives for ovulation that just didn’t work, the woman whose crippling infertility is breaking her spirit and she’s not sure she can endure anymore needles, the woman who is now considered geriatric after the age of thirty five and has her biological clock ticking fiercely away implying she better hurry or simply miss the motherhood train. There’s the woman who cries out Why?! Dear God. Why! she was unable to carry her baby to full term and bring it home to the now empty bassinet. There’s the woman who has one child and never intended of giving it a sibling; yet we divulge about the “only child syndrome nonsense” or maybe she is trying to conceive once again but your questions just weigh her down; as she is perfectly aware that her body is not the young vessel it was before. Deep breath. Just take another deep breath. And finally the woman who simply did not want children, misjudged and scrutinized for choosing a career instead, simply put -it’s her body and her choice therefore- no baby. There are so many scenarios that need to be considered when we want to ask this question. So perhaps don’t ask it all, instead turn your attention to making it your business in blog and being mindful; you don’t know the power it may give a person to persevere; because at some point in your life you were in their shoes too.

Denise Castro is a Cuban American, a working mother and photographer, who currently resides in Miami. In response to unsolicited advice about how to handle her body after pregnancy, Denise began to blog about what it really means to be a working mom. She has previously written for Scary Mommy and Motherhood: The Real Deal. Denise blogs here. She can also be found on Instagram and Facebook

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Guest Posts, Yoga

Tracing the Thread of Sanskrit in Yoga Practice

September 13, 2020
sanskrit

By Donna Vatnick

We sit in a circle, legs crossed, each of us nearly grazing one another’s knees. The heating vent hums. Light comes soft and yellow from the high ceiling. The view from the glass door in the corner of the room tells us the sun has already set- it is after 6 pm. On the first day of 200-hour yoga teacher training, we are strangers who sit together, searching for something we can’t name. There is a shuffling of limbs and papers as our teacher encourages us to open to the first page of Patanjali’s book of sutras. Together, we are to recite the first sutra in Sanskrit: atha yoga anushasanam. We will recite it six times together. I close my eyes. Immediately, my mind leaps into action.

First comes the judgment.

Isn’t it pretentious and appropriative say these words with such weight when we don’t know what they mean? Why is everyone going along with this? Why is my mouth moving if I don’t prescribe to this?

Second comes the doubt.

But, do I actually prescribe to this? Maybe I’m not pronouncing anything right. Why can’t I remember the words without being prompted repeatedly? Maybe this was all a mistake and I should run out of here and go back to saying “thank you” to my Judeo G-d after my 6:30 am stretches. Leave it at that. Does anyone else feel this way?

I open my eyes and search for anyone’s gaze to meet mine across the room, but everyone seems fixed and concentrating.

Then, rolls the anger in.

How dare the western market implement this traditional healing practice in an expensive as f*ck yoga teacher training. How dare I, as a Russian-Jewish white person with no background in any other tradition, trust this training to equip me to teach something so outside my scope of understanding?

 I’ll bet the wooden floor I’m sitting on was stolen from unconsenting forests and here I am training to be a yoga teacher to encourage unity.

 Here I am, on the edge of a self-care industry which profits from our anxiety, encourages us to spend our savings in order to feel any semblance of embryonic peace. Is it my learned individualism that throws me into “taking care” of my buzzing gut? Why is this spiritual practice treated as a commodity?

Anger spirals until it reaches down to the pit of disappointment.

Just relax for a second and say the words! Why can’t I just accept this Sanskrit phrase and sink into it? Is this is all wrong?

 At the end of the sixth repetition, the room falls silent. A feeling of awe and surprise washes over me.

This clean room in Boston reverberates with the rich, ancient tongue that lives here too, far from her roots in India (or so I assume). The emotions quiet and I listen to thirty-eight people breathing with bodies full of stories and a city ambulance roaring in the distance.

Atha yoga anushasanam.

In other words: Here, now, the practice of yoga begins.

To investigate the here and now of this five minute brain overdrive, I have no choice but to examine the legacy of Sanskrit as the language of modern yoga.

As a continuing student, how do I start to understand the dissonance I felt during the beginning of the sutra recitation?

As a fledgling yoga teacher, what role will Sanskrit play in my public classes?

Is integrating Sanskrit into modern yoga essential? Does it help preserve the evolutionary roots as respect for the practice? Does it exoticize the practice to appeal more to the western masses?

The word “Yoga” itself comes from Sanskrit meaning, to “yoke”, to create unity. One could interpret this practice as a way to unify the body, mind, and spirit. It also encompasses unity and connection with others: our teacher, community, the hum of the world.

What if  the essence of the word could mean something deeper too: unifying yoga’s origins with its evolution.

It means being aware of the threads that connect all of us through space and time.

The thread of Sanskrit is most likely very alive in your own native tongue.

Estimated to be 3,500 years old and sharing roots with the majority of modern languages in Europe, Sanskrit is categorized as an “Indo-European” language. There are 3.2 billion native speakers of Indo-European languages on every inhabited continent in the world today.

Before having a written alphabet, Vedic Sanskrit lived as an oral tongue passed on through memorization. One of the first records of transfer to written language was in 1500 BCE when priests and scholars of Hinduism decided to preserve hymns and poems. They compiled the oral traditions of “The Vedas”, which translates to “the knowledge”.

From there, evolution and mutation ran its course, expanding written Sanskrit from the priest class to the masses in India as power dynamics and literacy between classes shifted. Thousands of philosophical and religious Hindu texts were written and communicated in Sanskrit, as well as Buddhist and Jainist ones.

Today, Sanskrit is considered by some to be a “dead language”, like Latin. It declined in its abundance around the 13th century when Hindu kingdoms began to disintegrate due to invasions from other rulers, and the hubs of Hindu literature perished.

But Sanskrit is very much alive in other ways.

It breathes in ample philosophical texts, religious ceremonies, hymns, songs, scholarly circles, literature, and, of course, modern yoga.

To trace the thread of modern yoga practice is a winding task. The evolution of Sanskrit in yoga is just as nebulous and mysterious.

One could, with a variety of resources, trace yoga back to sitting meditation in Patanjali’s day. One could also associate it with the Hindu religion and mysticism. One could relate it to Dutch gymnastics and products of British imperialism in India.

One could also credit yoga to Krishnamacharya, “the father of modern yoga”, who brought scholarly knowledge of Sanskrit into his teachings in India in the early 1900s.

Pattabi Jois (1948) or Iyengar (1966), the men who systematized the yoga postures many people practice today, followed in Krishnamacharya’s footsteps.

One could argue yoga is exercise or lifestyle or philosophy. One could even say that yoga is practicing focus of the mind, in any way, shape, or form.

One could say it is undefinable.

No matter which lens you use, this is certain: modern yoga is a union of countless movements in history.

Expanding all over the world, yoga has become, at its core, universal, with all its mutations of lineage, language, and interpretation. My Russian-speaking sister who practices yoga in Moscow knows corpse pose as “śavāsana”; my Spanish-speaking training classmate from Mexico knows mountain pose as “tadasana”. These terms can serve as references that unite people across otherwise existing barriers.

If it’s so universal, why does reciting Patanjali feel so dissonant to me?

On many levels, Sanskrit still feels coded and unfamiliar.

There is a presence of deep wounding, of imperialism and consumerism and ignorance.

But there is also the presence of deep time, of history moving through our mouths, of collective sound and echo – the most elemental thread.

The yoga, the “yoking”, exists in both noticing the unity and picking apart its details.

Sanskrit serves as a reminder that we have a lot to learn. The mystery of movement, evolution, and origin is bountiful.

Patanjali’s first sutra invites us to not only “be here, now”, but also to examine what the “here” and “now” consist of.

Here and now is not an isolated event. It is the woven fabric of limitless threads.

Here and now, we breathe recycled air from billions of organisms, we build our homes on billion-year-old fossils and moving rock.

We stand on the shoulders of written and forgotten history;

We inherit language and wisdom that is so fluid, so integrated into the mundane, that most of the time we can’t even distinguish the pattern.

In comparison to the vast “here and now”, we are all beginners.

Donna Vatnick is an explorer of relationships and our inner universes. She writes pieces about intimacy, loneliness, and vulnerability. Donna also love to paint, write music with her bands “Otter” and “Strawberry Machine,” and feel the wind. 

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Family, Guest Posts

My Disapproving Mother Unwittingly Fuels My Creative Expression

September 8, 2020
expression

 By Lisa Mae DeMasi

The room began to close in. The air got thick…dense. Tension seeped into my pores. I grew smaller in stature—shrunk right there in my chair before her, as if I was Alice and had just choked down a little red pill.

The topic is forthcoming, typical of family gatherings, a line of discussion of an inquisitive nature. It is terribly humiliating this line, disintegrating the little validation I feel about myself, and certainly paving the way to pulverizing any validation I someday hope to feel.

She is triumphantly sitting across from me in my brother’s parlor, her hands folded over her swollen belly on this Christmas Day.

My hands are not folded over my own swollen belly, but my ever-shrinking Alice fingers are fumbling about, trying to maintain a grip on my ever-growing glass of sherry. I wallow in thought.

It’s a terrible thing to be shrinking, I muse.

I try to convey to her, with an expression of pity, that I’d like her to cut this sort of thing out: Hand me the blue pill! Return my body back to its normal inadequacy!

She picks up on my expression, but it doesn’t stop her. Her eyes, piercingly blue, bore into my forehead, mining my mind for the reasoning that prolongs the ongoing predicament. It is the matter that seemingly sears her brain daily, upon waking.

Words penetrate the thickness.

They loom before me, big and fat and dripping with turkey gravy. She says, “Are you ready to get back into the circle of life yet?”

Here we go.

I resist rolling my eyes, suck in my breath, and feel the pressure against my insides. Time slows to a crawl.

My lungs deflate, a slow leak like a bum tire. I maintain my front, an uneasy smile, thinking I have never departed from the circle of life!

I am here, albeit dwindling to mere molecules in my chair—she, mother; me, daughter—amid a festive family holiday. In my book, that constitutes part of the arc in said circle.

A voice in my mind, sounding as if it’s just taken a hit from a helium-filled balloon, squeals at me: That’s not what she means.

I laugh to myself, entertained: “Girl interrupted.” Say something else…

She’s not referring to procreating or dying or even “eat or be eaten.” She means circulation as in, “Are you ready to get back into circulation yet?”

Oh yeah. “Girl reactivated.”

The topic is the one that translates to me getting a paying job, rather than continuing to “run away from reality,” with my so-called “writing interests.”

I suppose, from her perspective, four years is a long time for her daughter “to run away from reality.” It is a novel pursuit, which thus far has yielded fruit the size of a water meal. However, in these four years she has failed to realize that I’ve poured my heart, soul and angst into this self-proposed commitment. Accordingly, I’ve also sought out Reiki to induce some self-love, since I am—especially when engaged in writing—constantly and colorfully harassed and torn to shreds by my inner critic.

Needless to say, my mother is my outer critic.

In the peace of the lovely colonial room, Dennis sits in a chair to my left, and my father sits beside my mother. My brother is off in the kitchen, cutting cheese.

The question, relating to the humiliating, fruitless topic that my mother could not resist in asking one moment longer, (particularly in light of the New Year—making resolutions, picking up the pieces and starting anew, and so forth) remains there, unaddressed. It lingers, splattering the coffee table with fowl juice, tainting the sherry and the nibbles, while extinguishing the flickering light of the assorted votive candles. This “circle of life” subject deflates the holiday mood; all falls flat.

I gaze back at her, with a hint of incredulousness in my expression saying: Why can’t you support my endeavor? Why can’t you just be a nice mother?

She, of course, does not pick up on this. She has never picked up on it, despite the countless amounts of times I’ve attempted to impress my feelings upon her.

Why should I expect anything different this Christmas Day?

Although he’s sitting beside me, I don’t defer to Dennis for his unwavering sympathy, support or opinion. I keep this subject between my mother and I, leaving open the possibility and space for us to “hash it out,” so-to-speak.

The “hashing it out” (a confrontation of sorts) does not happen. As usual, any real invitation to speak candidly, openly… ends up shunned upon.

There’s no avoiding her intention. She moves the subject right along and puts the question in a more specific form, saying: “What kind of job will you look for?”

My expression sours.

The refrain in which Elton John sings “in the cir-cle, the cir-cle of life” begins to repeat in my head.

The core of me within begs to rise up and show itself—my insides, out. The scorched and glistening spongy tissue springs from my throat and slops to the floor next to the coffee table. I stare at the battered evidence, my guts, and choose to defend myself (something I haven’t dared to do since I was a teenager).

My face is deadpan, void of the four-year compounded emotion relating to my writing efforts (best described as trying to squeeze blood from a stone intermittently). I assert into the space, some distance over my scorched and glistening core—my guts—and say, “I’d like to become a successful writer.”

My mother’s expression remains unmoved, quite serious and probing.

I refrain from glancing at Dennis and keep the perimeter open and clear for fire. I hope for confrontation—for a once-in-a-lifetime candid discussion.

Dad shakes himself out of dozing at the subject matter and pushes his glasses further up on his nose. He interjects, “There are lots of teaching jobs out there. You could be a teacher. All my retired engineer friends teach—you could teach middle school or high school.”

But Dad, I don’t want to be a teacher.

Not quite to my advantage, my mother’s ears fall deaf on the suggestion, and the conversation flatlines.

I focus on the flame of a burning candle, situated in the middle of a marble-topped mahogany end table, between my father and mother. I cross my eyes silly—my forehead cramps. The funky play of light brings me into a world of my own, prompting ironic clarity.

The helium inner voice comes on the wind again—she is from a different time and a different playing field. She knows not what it means, what drives and feeds one’s magnetism for risk, leaving the known for the unknown…

The voice becomes stronger and sloughs off the high pitch. She is the catalyst to our creative expression, you see, the thing that sates us—our subversive writing.

Anew: I am rebel with a cause, confident, triumphant even, in my own right.

My scorched and glistening guts slither up the couch and climb back down my throat to their rightful place. In a trance-like state I say, “Wait till my manuscript hits the big screen.”

My parents are stunned and wide-eyed. I can just make out their expressions in my periphery.

Nothing more is said on the matter.

*This essay was published in Elephant Journal with the title She, Mother. Me, Daughter.

Lisa has been publishing essays for five years on the writing life, sex and relationships, and her love for horses, dogs and cowboy country. She lives near Boston, where she rides horses and commutes by bike to her job writing and editing technology blogs for Dell Technologies. She is currently pitching her memoir Calamity Becomes Her to literary agents, a story about proving herself capable of taking care of horses on a Wyoming dude ranch, and is at work on two sequels. You can contact her at lisa.demasi@gmail.com and follow her @lisamaedemasiLinkedIn or via her website nurtureismynature.com.

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aging, Guest Posts, Women

Law And Yoga

September 6, 2020
lawyer

By Jennifer Lauren

I’m lying on the floor in the basement of the Washington Conference Center, my back pressed against my cork yoga mat, wearing Lulu Lemon tights. My feet are bare. I hope no one notices that the snowflake manicure I got before Christmas is starting to chip.

“Extend your left leg. Pull your right knee into your shoulder. Squeeze in to stimulate your right ovary,” the teacher says.

She’s teaching a workshop on “yoga for hormone balance” to 24 over-40 women, all of us lying on our yoga mats, seeking answers to questions we can’t articulate.

“Uddiyana Bandha …” Sanskrit for Kegels, where you pull up your nether-regions tight like you’re trying to hold in pee. “Transfer your attention to your ovaries, and release….”

Two dozen women release breath together. It sounds like a prayer. I translate, their thoughts are my thoughts:

We have everything. We should be happy.

I look out the window, where I see the bottom of the sky scraper next door. I had my own office, with a view, in that building. I was a lawyer. A really good lawyer. I wore designer suits and clutched Starbucks in my perfectly manicured hands. I was 27 and gorgeous and ready to take on the world.

At 41, I teach yoga and write novels no one has published yet. In December, just after I got snowflakes painted on my toes, I put my law license into inactive status so I could …. I’m not sure. Follow my dreams?

I didn’t realize my dreams would lead me to the basement of the Conference Center, focusing on my ovaries. Yet here we are, together.

Before 40, we were brilliant. Beautiful. Now we’re strangers to ourselves. We’ve tried acupuncture and green tea. Yoga and meditation. We quit jobs and took vacations and got divorces. But we still feel “off” in a way we can’t explain.

If we were men, they’d call it a mid-life crisis. We’d buy Porches and sleep with 20-year-olds. But we’re women. We can’t afford Porches because we’re paying for dance team and soccer tournaments. We have no time to sleep with 20-somethings because we’re doing laundry and driving our kids to Taekwondo.

“We’re tired, we’re cranky, we’re doing too much, but it’s never enough,” we say to our doctors. They offer us anti-depressants and tell us to find “me-time.” Go to therapy.

None of it works.

So we sign up for hormone balancing through yoga. We read the Goop website when no one’s looking, although we mock it with our friends. We immerse ourselves in the culture of Elizabeth Gilbert and Brene Brown. Follow your dreams. Manifest your magic. Love greatly.

But most of us have no idea what we want to manifest, much less the power to manifest it. So we flounder to find The Thing We Should Do. Maybe we leave good men. Maybe we sell everything and move to Italy, India, and Indonesia for a year.

Maybe we walk away from well paying, prestigious careers just as we hit our prime.

I was a lawyer. I argued in front of the Ninth Circuit Court of Appeals and externed for the Chief Justice of the Washington State Supreme Court. I second-chaired three jury trials, all with eight-figure demands. We won them all.

At 27, I was on top of the world. At 40, I was buried beneath it. I never saw my babies, even when I went “part time.” When I was home I was on my phone, sure I was one missed email away from a malpractice suit. I watched my babies grow into tweens and teens after work, from the driver’s seat of our SUV.

I’d think, what’s wrong with me? I have it all! I should be happy!

But we aren’t happy: stay at home moms, doctors, preschool teachers, artists. We all stare down 40 and ask, what’s wrong with me? We joke about first world problems because we feel guilty admitting we are miserable in our prosperity.

We stare at our phones. At Facebook. Instagram. Twitter. We see the world fawning over British royals in size two suits and something called a “Kardashian.” We look down at our own thickening waists and download the newest couch to 5K ap.

We’ll be happy when we can run that mile/fit into that dress again/the kids go off to school.

Quit that job.

One gorgeous May afternoon, I left my pretty office with a water view behind. I decided I wasn’t a lawyer anymore.

I took yoga teacher training. I signed up for a writer’s retreat. I purposefully ignored the little voice in my head screaming, what the Hell are you doing?

My friends were jealous of the unimaginable indulgence of spare time. “You’re so lucky,” they said.

But who am I? I wonder. Who am I if I’m no longer a lawyer and my kids will be soon able to drive themselves to soccer.

When we were kids, well-meaning adults said we could do it all: career, kids, sexually satisfy our partner, size two jeans, a plush bank account of our own earnings. As we face middle age, it’s no wonder we’re neurotic. We’re all floundering, trying to find our place in a world where we are increasingly irrelevant.

We smile while making homemade gluten-free soy-free cookies after work for the fifth grade picnic at 11 p.m., work deadlines be damned.

We ask, why can’t we be happy?

We meditate. We take more vitamin D. We blame perimenopause, and try to balance our hormones through yoga.

We lie there, pulling our knees against our ovaries and visualizing and end to the unrelenting cycle of do, do, do. Be, be, be.

And we think: I’m so lucky. I have everything. I should be happy.

Jennifer Laures is a recovering trial attorney living near Seattle, Washington. Ever since she wrote her first masterpiece, The Creature, at the age of five, she wanted to be a writer. But life happened, sidetracking her with pesky bills and peskier, but well-loved, children. Jennifer has worked as an award-winning reporter at a nationally recognized newspaper; fundraising director for inner city schools; and civil litigator for 13 years. In May 2019 she quit her day job to write, teach yoga, travel, and chase her dreams. 

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Guest Posts, healing, Illness

I Got Sick

September 3, 2020
sick

By Dakota Antelman

I had a favorite phrase when I was young.

“My body hates me.”

I did, after all, spend quite a bit of time in hospitals.

First, there was the epilepsy. I underwent four EEG monitoring procedures on my brain where doctors glued dozens of electrodes to my scalp. Each time, they’d send me home wearing an electric ponytail of wires that slid down my back and into a string bag carrying a shoebox sized computer. My mother hovered through it all, staying close, playing the Brandi Carslile music she loved when we drove to and from the neurology clinic.

The doctors didn’t like what they saw on any of those EEGs. So, they diagnosed me with a mild form of epilepsy and prescribed me Depakote, an anti-seizure drug. A month later, my body exploded in hives in an anaphylactic response to the medication. I switched drugs. The seizures were well controlled with minimal side effects from then on.

“But it’s worth keeping an eye on,” my neurologist said.

Then there was the Marfan Syndrome workup. My mom said I looked too tall and was worried that my pre-teen propencity for spraining my gangly ankles or jamming my fingers while wrestling with my brother could actually be the result of a connective tissue issue. Both those symptoms, she read, were common of Marfan patients.

Her fears proved unfounded. But all that did snowball into a series of EKG monitoring procedures that, in turn, led to ultrasounds examining my cardiovascular structure. Those found that I had grown up with an artery wrapped around the wrong side of my heart. It wasn’t necessarily dangerous.

“But it’s worth keeping an eye on,” the cardiologist said.

Around the same time, doctors identified a curve in my spine. They diagnosed me with scoliosis and fitted me with a custom plastic brace. For two years, I slept in a clamshell contraption that encased my entire torso and pressed a metal bar into the space just below my collarbone.

Every night, I stood dejected in front of my mother or father to be ratcheted into the brace by the three velcro straps on my back. Each morning, I woke with deep gouges in my flesh from the seams of my undershirts.

I would dress for school drenched in the sweat I’d formed under unbreathable plastic skin.

“But at least that got better,” my orthopedist said.

As I finally tossed the brace to the trash, though, my dentist referred me to an orthodontist who, in turn, referred me to an orthodontic surgeon. She told me my conflicting crossbite and underbite were so severe I would need major surgery to correct them. At my parents’ suggestion, I took a year off of school before college to let doctors chisel my jaw loose from my skull and pin it back in place with 42 titanium screws and plates.

Finally, in tandem with all of that, my mental health collapsed in my senior year of high school. Lifelong anxiety crippled my studies and depression led me to the brink of suicide. I spent a week in a locked inpatient psychiatric hospital where I befriended everyone from a 71-year-old heroin addict to a girl my age who could not speak and who tried to kill herself twice during the week I knew her.

The boy with scoliosis, a misaligned jaw, epilepsy, depression and anxiety, I learned to love the hospital waiting room for its absence of blood draw needles and antibiotics that made my stomach churn. I began to think I looked cutest in hospital gowns.

But, looking back, it doesn’t even feel like those days lost to the warp of hospital time were even mine to begin with. The world gave me those ailments. My mom got me to the hospital. And the doctors ruled my days when I was there.

Thus, for all my nights spent hearing the beeping white noise of blood oxygen monitors and the sounds of nurses’ clogs in the hallways, it doesn’t feel like I ever got sick until the eve of my 20th birthday.

***

I went to the doctor just two days after Christmas in 2019. I had been sick with a brutal sore throat since finishing my first semester at college 13 days earlier. My neck also ached. My lymph nodes were swollen.

An urgent care doctor at my primary care clinic gagged me with a strep test. She shoved a flu test up my nose and sent me upstairs for bloodwork.

I didn’t have the flu. And I had dodged mono despite several of my friends coming down with that in the previous months. Most of my hormones were normal and the strep test that came back positive didn’t worry the doctor too much. She assigned a single course of antibiotics.

The grape sized white lump on my testicle, though, did worry her.

“That’s something,” she said.

She ordered an ultrasound that came back inconclusive. She referred me to a urologist.

I scheduled the appointment but, in a matter of days, realized I could not wait for it to come. The growth quadrupled in size after the ultrasound. It hurt to walk. I was scared. My dad nearly died of testicular cancer in his 20s, after all. The stuff was in my DNA.

So I checked myself into the ER the same afternoon I moved back into college for my spring semester. After a half dozen doctors examined and interrogated me about my medical history, one eventually came into my room and told me they would conduct an emergency operation to remove and analyze the top part of the still unidentified mass. They couldn’t name it, but it looked bad.

***

A nurse later told me that the acidic nature of the growth had neutralized the numbing cream and injections the surgeon tried to administer.

I felt everything.

Now, my throat hurt from the hot heavy gasps I took as the knife cut into my skin.

The side of my hand showed red, bearing an almost cartoonish bite mark from where I had clamped down to avoid cursing in a pediatric ward.

And I felt the dry salt of sweat clinging to my face and chest after erupting forth when I tightened my muscles in pain.

I collapsed into the arms of my roommate who had been waiting outside the ER doors. I was exhausted. I felt violated.

***

I wrote part of this essay the night before the follow up appointment after that ER visit. I didn’t know what the biopsy found. I didn’t know if I would soon be in an operating room under bright light waiting for an additional surgery.

I know the answers to those questions now. I still don’t want to include them. Although I will say I’m better now and free of any cancer.

I leave this story incomplete because this is not the story of a cancer scare. And this is not a trauma memoir. This is a testament, a macabre note to self about the ways these moments somehow felt grimly empowering.

Throughout my childhood, I went to the hospital when my mother told me to, or when my primary care physician found a problem during my annual physical.

This time, though, I needed no prodding. It was my gut instinct and my pain that made me peel my body off my dorm room floor and say, “I’m going to the ER.”

Throughout my childhood, my mother drove me to the hospital regardless of who I saw there. She loved me. She wanted to take care of me. And I’m grateful for it all. But, with few exceptions, she was the one always transporting my body from my safe home to the unfamiliar hospital. That meant she was the one effectively submitting my body to the often-invasive work of these doctors.

This time, though, I did the transportation. I walked down my stairs. I hobbled down the cracked streets of Chinatown, dodging puddles and waiting for walk signs. I stared confident mature daggers at building numbers and marquee style signs reading “Main Entrance” and “Emergency Room.”

I walked into that building. I placed myself before the triage nurse. And I said “I need help. Do whatever you must.”

Throughout my childhood I knew that the body named “Dakota” was often sick. I knew when that body hurt, and when that body’s brain spun with anxiety over needles, thus passing out and scaring nurses. I knew that body hated hospitals with every bent bone, misfiring neuron and deformed artery it possessed. But I never did feel like I was sick.

When I was with all those doctors, I didn’t have to look inward and articulate what I felt. I didn’t have to interact while they verbally or physically invaded my sick body. My mom, or my primary care physician’s referral did all of that for me.

Thus, the true agony of these years was not the pain, the surgical rehab, the discomfort of the back brace, or the confusion of waking up after passing out. It was, instead, internalized automatic dissociation. My body wasn’t mine when I laid on those tables. It was a slab of diseased nonverbal meat being cleaned and purified to be fit for the normal human world.

This time though, I didn’t feel that way. I got myself to that hospital. I articulated my pain and asked for help to relieve it. That meant that, as doctors worked on me, I was the one asking, “What are you putting in my IV?” I was the one saying, “I have a low pain tolerance, I will probably pass out.” And I was the one guessing “What’s next?”

Self-advocacy forced me to come back into my own body that day in the ER.

And that independence wiped the phrase “My body hates me” from my lexicon. My body alone didn’t get sick. No, my body and I were one.

I got sick.

Then I got help.

Then I stepped into the hospital vestibule. The door didn’t open, so I waved defiantly at the black box atop the metal door frame, a sick boy stumbling out of that hospital with unfamiliar association and confidence.

Now, the motion sensor saw me. And the door opened.

Dakota Antelman is a young freelance writer from Massachusetts with experience in traditional AP style journalism and personal essay/column writing. His essays have been published in a variety of outlets including the non-profit, Let Grow.

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Guest Posts, Mental Health, parenting

All Boys Paint Cows

August 31, 2020
nick

Self-portrait by Nick O’Rourke, age 15

By Miriam Feldman

My husband and I are driving to Paris from the south of France. I am in the passenger seat, writing ideas for a story about our son, on a napkin. Our son, Nick, has schizophrenia.

You see, I am the self-appointed conservator of his legacy. I have no complete poem, painting or song to present. Yet. Scraps of a life, one piled up on the other, form the work of art that is his story. I will continue to document his life and put it into the world for as long as I am here. Perhaps he is stricken, but perhaps he is just too magnificent for this world, a blazing light they don’t have eyes to see. But I see. A mother’s eyes can always see. Super tough, I can look directly at an eclipse without damage. Blindness is not an option.

*

When he was still inside of me, a tiny little tadpole boy swimming around, my husband and I heard his heartbeat for the first time. Back in those days they didn’t do sonograms without a medical reason, so the mystery of an unborn child was a universe of questions. We sat in the doctor’s office as she placed the stethoscope on my belly, and the sound came whooshing through a speaker. It was like the repetitive slap of water on some distant ocean shore. My husband blanched and reached behind him for a chair, then sat down hard. He had to breathe into a paper bag, overwhelmed by the sound of Nick’s beating heart.

Afterwards, we went to a small Ukrainian restaurant to have lunch. I ordered soup. It was particularly delicious, and I tried to figure out why. Staring at the bowl, I noticed the way the carrots had been cut. They weren’t the usual uniform disks, graduating in size from the thick part of the carrot to the tip. They were crazy random shapes, as though the cook had performed a wild cutlery dance, shiny blades flying. There were circles, half-moons, rectangles…little snippets of carrot that defied description. That was why the soup was so good. Something about the constellation of shapes enhanced the flavor, made it more interesting. When something arrives in an unexpected form it holds adventure, interest, mystery.

Nick arrived six months later and filled our world with his own configurations of unexpected stars. Some were beautiful, some had sharp edges that cut.

*

Driving along a grey serpent of highway, we descend into a valley. Immediately, I see the blue and red lights. It is the blue that catches your eye. We are all used to seeing the red, yellow and green of traffic lights, but like the black and white of a police car, blue calls out “calamity!”

“What is going on down there?” I say, sitting taller, my straightest spine. The traffic slows down and I can see people on the median, an upside-down van, personal belongings strewn everywhere.

“Pull over, I need to go there.” My husband knows me well enough not to argue. There would be no way for me to pass and not go see about what I could do. It is how I am wired; I am addicted to trying to help. I need to know I tried. I want to be a hero but I never am. I read about a woman who was electrocuted running into water to help a man stranded in a storm, ignoring the downed power lines lapping creepily at the edges. I thought, “I would have done that.”

Grabbing a water bottle, I open the car door before we have even come to a stop. My husband admonishes, “be careful crossing…” but I am gone.

I can’t decipher the situation at first. First, I see two women attending to…what? Oh, a little dog. “He was thrown from the vehicle,” one says, as she pours water on his head. “I’m trying to cool him off.”

“Do you need more water?” I ask. No, they don’t.

The van is about a hundred feet away from me, several people lean inside, wearing blue latex gloves. Where did they get gloves? The ambulance hasn’t even arrived yet. The air has a very still, artificial feeling as I walk over, through the debris, artifacts of a trip, a life. My foot sinks into a package of mushrooms. I see shoes, papers, a book, an open box of spaghetti that landed like pick-up sticks. A young woman bends over and retrieves a wallet, “Here is his license, now we know his name.” I wish I had been the one to find the wallet. I walk over to the van.

Sound reduces to a muted decibel, wind moves slowly, and I see the two people in the vehicle, roof partially ripped off. I think of an Edward Kienholz installation I saw at the museum in L.A., everything in the whole world shoved into the corner of one room.

Kienholz left detailed instructions when he died in 1994. He was buried, sitting in the front seat of his brown 1940 Packard Coupe, a dollar bill and a deck of cards in his shirt pocket, and the ashes of his dog, Smash, on the seat beside him.

The couple in the van look pale, not just their skin, but the entirety of them is a shade lighter than the rest of the world. Arms and legs splayed out stiffly, they look a bit like big dolls. Blue gloves firmly hold a red-soaked towel against the old man’s head. “Hang on, hang on,” someone says. It sounds to me like they are all under water. The woman with the wallet says, “His name is Fred.” The woman in the car moans it is her shoulder that hurts.

There is nothing I can do, nothing for me to contribute. My fingers moving against each other as if I could feel the air at my sides, I just stand there. The old man and woman, vacation careened terribly off-course, will be tended to by other drivers until the professionals get there. I go back to the car.

As we drive away, we pass the ambulance, siren cutting the day, headed up to help Fred and his wife. The radio is playing one of Chopin’s 24 Preludes and mournful piano chords fill the car. My fingers still caressing thin air, I listen. The countryside condenses as we approach the city.

*

An hour after we leave the accident, we reach Paris and our small hotel. I immediately turn on the television, wanting to see the news. Ridiculously, I expect to find out about the crash. I want to know how Fred is doing.

Instead, I am informed that an abandoned, just born, baby has been found in some bushes by a policeman. The anchorman teases the story before commercials, “Stay tuned to see what the officer first said to the baby. It was captured on his bodycam!” They show a second or two of film, two dark hands reaching into the foliage, an infant’s quiet cry, wind sounds, a man’s voice.

I sit on the awful hotel bedspread and wonder if I can bear the sadness his words.

They return with footage of a stocky officer holding the infant and telling her not to worry, that help is coming. But I heard something else during the lead-in, in the moment he pulled her out of the bushes. I had heard the real first thing he’d said, and it was “I’m sorry.”

I’m sorry you came in the world like this? I’m sorry you came into a world that is like this? I’m sorry this atrocious thing happened to you?

The news media had missed what he’d really said first. They’d missed the most plaintive, simple and enormous apology ever made.

*

The Sacre-Coeur Basilica at Montmartre in Paris sits on a hill surveying the city. It can be seen from almost anywhere. Standing on the top floor of The Centre Pompidou with my forehead smashed against the glass of a floor to ceiling window, I stare. Far away and across the city, the Basilica seems to be lit by its own sun. The eerie light calls up a memory and I am struck, like a blow to the head, by the fear I’ve forgotten something important. I can’t remember the details, but something happened with Nick up there, a decade ago when we came to Paris to paint, just before he lost his mind. What was it? Straining for the memory, I think of the small black moleskin notebook he brought on the trip. I’d found it, and read it, years later. Just prior to his unspooling, he’d recorded a beautiful, unsettling narrative from the cliff. One foot in our world, one foot in his future world, he’d told us what was happening in arduous, aching cursive.

When was the moment? When was the exact second of the shift?

And then I remember what happened. We’d lost him up there. One moment he was next to us, and then suddenly he was gone.

“Where did Nick go?” I’d asked my husband,

“I don’t know, he was right here.”

We began to look for him. We searched everywhere, the building, the grounds, then back to the building. I remember standing at the top of the endless steps outside and squinting at a group of kids lolling around, thinking he must be with them. I was wearing a slippery crepe skirt and flowered blouse that whipped about my body with the wind. Eventually, he just appeared.

“Where were you?” I asked, my voice strident from worry.

“Right here,” he said, “around.”

From my perch at the Pompidou, I see a crack, a split second of light between the truth and what might have been. I want to dive into that space.

My husband walks up to me, leans against the glass, and I say, “Remember when we lost Nick up there?”

His voice low and measured, he says, “You know, I’ve always thought that was where it happened.”

“What do you mean? What are you talking about?”

“I think something took him, up there on that hill, and gave him back to us altered. I think that is where he went crazy.”

This had never occurred to me and immediately I knew it was true.

“That’s pretty woo-woo, even for you, buddy,” I say because the idea is more than my brain can manage and I have to trivialize it in order to continue breathing.

“I know,” my tall and dark husband says, “but I believe it.”

The sun dips behind a menacing cloud and the Basilica darkens. Its luminous stone façade suddenly looks drab, desolate. My husband wanders off to the contemporary collection, I turn to the modernists.

*

When my kids were small, they used to loll around on the floor of their father’s studio with big sheets of butcher paper and paint while he worked. One day Lucy was teasing Nick because he always made cows and he shot back, “All boys paint cows, and anyway, I’m just starting. I’m going to paint a lot of other things.”

*

Sitting on a narrow bench in the Modern Collection (from 1905 to the 1960’s), I think about the day we lost Nick at the Sacre-Coeur. The area under my jaw constricts and saliva begins to pool in my mouth. There is a quickening of the blood as it moves through my veins. My arms crossed tightly across my chest, like armor, I lean forward and stare at the floor.

We were just walking around and then you were gone. We looked and looked for you, we did. Where did you go? Was it a portal? Can we go there now and find you? Please. Or are you in here? Are you at the Pompidou? Is this where you went? Did you go through a door we couldn’t see and just come here? Are you in the big Fernand Leger, in the corner, with the cerulean and the ochre? I would have thought you’d go to a Picasso, NickNack, but did you decide to trick me with a Leger?

Or was it the perfect little interlocking slats of varied woods of the floor, all different colors, that drew you to the Pompidou?

I’m rocking back and forth now with clenched bones holding in the torrent. I don’t want to cry in public, but now I am convinced some bad magic really did happen and it is true that we lost him here in Paris.

So this is what happens if I let the stoppers out? This is what happens if I think about it?  Unbelievable, unyielding pain? Shredding of intestines? The longing, like gravity, for you? Then bring back the stoppers because I can’t live like this.

My husband walks into the gallery, sees me hunched over, sits down and puts a large hand firmly on my back, just between my shoulder blades.

*

It is 11:06 and I am at the desk in our hotel room, looking at the black night outside my window as if it were a painting. I want to believe Nick is sleeping peacefully right now, across oceans. If I could just know that, I would ask for nothing else. I haven’t gotten any texts from his caregivers, so he must be calmer than last night. I want to believe that with all my heart. I want to just slip into sleep and trust that all is well. Oh, I want.

Then, in the window, I can see Nick and his sisters painting in their father’s studio, the plywood floor a medium gray and the walls pure white in order to contain the colors of the paintings with neutrality. Against this palliative backdrop, my children are exuberant, messy, incongruous. Small pots of tempera are pushed to one side. The children lie on their bellies in baggy shorts, no shirts, legs flopping languidly as they move brushes across paper.

And then Nick looks up at me across time and space, as I sit at my computer in the dark. He smiles at me from his childhood, his cherub mouth so young and new, “I told her, Ma, all boys paint cows. I’m going to paint a lot of other things before I’m through.”

Miriam Feldman is a painter, writer, and mother originally from Los Angeles, California. After her son, Nick’s, diagnosis with Schizophrenia more than ten years ago, she began writing to document and explore the ways this new reality affected her relationship with her children, her husband, and herself. Her blog, https://www.miriam-feldman.com, explores issues of motherhood, mental illness and the politics of our mental health system. She holds an MFA in fine art from Otis College of Art and Design. Her paintings are in collections across the United States. She is represented by Hamilton Galleries in Santa Monica, Ca. Most recently, she joined Bring Change 2 Mind, Glenn Close’s organization to fight discrimination and educate around mental illness. She is on the Advisory Council and has a monthly blog on the website https://bringchange2mind.org. She is a frequent guest on mental health podcasts including https://player.fm/series/who-lives-like-this/art-and-chaos-with-mimi-feldman and http://www.sheilahamilton.com/category/podcasts/. Find her on Instagram at https://www.instagram.com/mimitheriveter/ where she is busy building a community of family and loved ones dealing with serious mental illness. Miriam now resides on a farm in rural Washington State with her husband, Craig. Nick lives in the small town nearby. She splits her time between the farm and Los Angeles, painting, writing, and staying active in the mental health community.

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Chronic Illness, Guest Posts, pandemic

What Doesn’t Kill You Still Sucks: HIV & COVID-19

August 28, 2020
covid

By Martina Clark

The last time I went outside it was March. March 2020, I believe, but who actually knows. Time has become the intellectual equivalent of holding water in your hand.

Like most of us, I’m under ‘stay-at-home’ rules during this pandemic. I live in Brooklyn, NY which has had approximately the same number of cases of COVID-19–and twice as many deaths–as all of Canada.

Like too many of us, I’ve also been under quarantine. It is almost certain that I have contracted COVID-19, although I can’t confirm this with 100% certainty because it is nearly impossible to be tested for the virus. The only viable way to get a test is to go to a hospital. On the off chance I have some other illness with identical symptoms, the last place I want to go is to an Emergency Room filled with people who are already ill. I don’t want to expose myself further. I don’t want to get on public transportation to travel. And I certainly don’t want to add to the burden of overwhelmed health care workers just for a test.

I’m about three weeks into this journey and I count my blessings every day that I’ve had a ‘mild’ case which, from my experience, presented as such:

  1. Fatigue. Extreme fatigue. Early on in this global health crisis, I joked that my ‘quarantine adaptive gene’ was strong because I’m quite happy to stay home and am never bored. But being lazy is not the same as fatigue and this virus made it nearly impossible to get out of bed many days, and the smallest of tasks wore me out. I’m slowly getting back to normal, but I still need more sleep than usual.
  2. Body aches. Again, I’m not a super sporty person, but walking up and down a flight of stairs is normally not a challenge. With this virus, however, one flight of stairs–up or down, not even both directions–felt like I’d done a thousand squats, run a marathon, and been poked with needles all at the same time.
  3. Chest pain. This is the part that lingers but, mercifully, with lessening intensity. In the first week of illness, I felt as if I had claws inside my rib cage. I’ve had bronchitis and I’ve had shingles. This was more painful than both combined. Today, three weeks later, it only feels like a Shrek-sized creature is squeezing my chest. Tightly. It hurts more if I sit too long. It particularly hurts in the morning when I wake up. But it is better. Much better.
  4. Nausea. Motion sickness on steroids. I choose to believe that whatever creature was clawing inside my chest was also making sardine milkshakes for fun. The worst was waking up to the nausea, although going to sleep with it wasn’t much fun either. During the day, it would sometimes abate, but not for long. It also lingers but is much milder than before.
  5. Headaches. I thought I’d been spared the headaches, until I wasn’t. They hit me quickly and like a brick. I’ve only ever had one migraine, but this was reminiscent of that experience, although without the light-sensitivity. Thankfully, those were neither constant nor lingering.
  6. Sore throat. Similarly, I thought I’d missed this symptom, but it joined my COVID entourage in the third week. It is not unbearable, but it is unpleasant. But I can swallow and breathe so I count myself lucky.
  7. Dry cough. The least annoying and, luckily, the least severe. I’ve definitely had worse coughs in my life, but this remains worth noting, as it is a regular reminder that I’m still not over this virus which is still working its way through after three weeks.
  8. Fever. Apparently, I’m a bit cold blooded because my temperature never topped 99º.
  9. Loss of smell or taste. Never happened. The litter box still needs regular cleaning.
  10. Shortness of breath. I count every lucky star in the sky that I never experienced any shortness of breath. My breathing has been shallow, and still is, but I’ve never struggled for air. I am so very lucky.

But this is not my first virus rodeo. The real kicker in this story is that this year marks the fact that I’ve been living with HIV for half my life, 28 years to be exact. I sincerely believed I’d served my time with life-threatening viruses but, apparently, the universe thought otherwise. I followed the guidelines, socially distanced, washed my hands, sanitized surfaces, and used face coverings before they were cool, but I still got exposed.

Most likely I was at higher risk because I have HIV. On the other hand, I’m wondering if I managed to avoid a worse case because I already take antiretroviral medications for HIV. I don’t know, nobody does. My doctor said that they are designing trials to study COVID-19 in people with HIV so perhaps they’ll be able to, one day, find out. I will gladly volunteer to be studied, as I have with WIHS, a natural history study of women living with HIV for the past 25+ years. My nephew calls me a ‘living resource’ which makes me proud and gives my survival that much more purpose.

Last week my doctor told me I was cleared to go outside, like actually outdoors, but I haven’t yet. Each day I look out the window and think, maybe tomorrow. I have amazing neighbors who shop for me when needed.

I have an extraordinary crew of siblings and niblings who check on me, send fruit baskets and cards, and offer to do grocery runs on my behalf and then drop and dash, leaving the goods at my doorstep.

My partner, by chance, was away visiting family–and is now stuck in another state–so I have not had the added burden of worrying about putting him at risk during my quarantine. Thanks to FaceTime we’re connected several times a day so although I am alone physically, I am far from lonely. It may sound strange, but I am grateful he is not in New York right now to experience this catastrophic chaos or the incessant wailing of ambulance sirens.

Friends check on me, my doctor checks on me, family check on me, and my beautiful cat, Sangha, reminds me that she is still in charge and needs more snacks. She snuggles with me and provides feline contact. She’s a tiny warm body, but she still counts.

And, surprisingly, (or maybe not) I feel far less alone than I did when coping with my diagnosis for HIV. We don’t know much about COVID-19, but this pandemic has hit like a tsunami. The numbers are staggering and horrific, but I know I am–tragically–not alone. 

With HIV, however, I’d never seen another woman with HIV–that I knew of–and so I felt I was on my own. I wasn’t, but that was how it felt. Today we are building on the experience and knowledge borne from the response to HIV and AIDS. While it is a reminder that we didn’t act quickly enough in the 1980s and 1990s to that pandemic, it is, at the same time, gratifying to know that all of the work that has been done by activists and scientists, and others, has not been for naught.

I’m so blessed that my story continues to transition to a happy ending, yet so very sad not everyone else is as lucky. My heart goes out to all who have lost loved ones to COVID-19, as well as to HIV and AIDS and all of the other awful fatal causes. Stay home if you can. Stay safe as best you can and know that you are not alone.

Martina Clark teaches writing for CUNY, but previously worked for more than 20 years as an HIV educator for the United Nations system, notably for UNAIDS, UNICEF, and UN Peacekeeping. She holds a BA in International Relations and an MFA in Creative Writing and Literature. Martina lives in Brooklyn, NY, but will forever be a Californian.

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Abortion, Guest Posts, No Bullshit Motherhood

The Pull of My Own

August 26, 2020
pull

By Isa Nye

I craved a little being to nurture, to suckle. I dreamed of nursing a newborn – I felt the pull of the moon at night – procreate procreate procreate. But I waited. I waited and waited. Because the first time was wrong. I let the first baby go not knowing how I couldn’t, not knowing how I could, in a sweat, in a nightmare, in a dream, in a doctor’s office, in desperation. Metal medical equipment and cheap posters on the wall. I waited years then. I waited for everything to be right – to hold my baby in my arms, nurture it, give it my milk, and all my love.

The CIA says every five seconds 20 babies are born and 10 people die – all day, all night, over and over and over –so many humans come and go, and yet when it is my own baby my world re-aligns and spins around this tiny being, my own baby, even in the womb, my baby pulls at gravity and becomes the center of my very existence.

My third baby waited eighteen days past when he was due to be born. Each one of those eighteen days dragged past – each of those nights it seemed as if the sun would never set, the moon never rise, like the day would never come where I would meet my boy. But I did.

There were the cramps – they started low, below the belly, a tightening, like everything inside me was constricting inward to a point that it could not reach, straining and tensing. “I think this is it. I think I’m going into labor,” I said through gritted teeth, writhing on the hospital bed, monitors already attached to me. “Take the cords off. Take them off!,” I said, loudly, pulling at them, throwing them away from my body, and climbing from the stiff sheets, touching the cold floor with my bare feet, squatting down, standing up, grabbing at my belly, leaning over, breathing in. “This is it. I’m pretty sure this is it,” I said, sucking in air, breathing out loudly, squeezing my eyes closed tightly, and everything in the world reduced to the sensation in my body – the contraction of uterine muscles sending out shock waves in an earthquake all my own.

This was my third baby. On the maternity ward a lullaby played every time a baby was born, marking a new being’s arrival on earth. Several women were in labor at the same time as me, and nurses busily rushed from room to room, a night’s work for them.

He was born into water. I pushed him from me with a roar of strength I did not know I had and may never feel again. A lullaby must have rung out across the maternity ward, but I did not hear it. I only heard him. “My baby, my baby, my baby,” is what I said over and over as I cradled him to me, naked and wet, his skin against mine, as around us the nurses, midwives, and doctors hustled, as my husband cut the cord.

The second baby had not come so easily. Not like the third. She was born amid struggle, after hours of effort, hours of pain that took over everything and became everything and then subsided and returned and subsided and returned. I bore down so hard I though my intestines would come out. She drug her placenta behind her on a short cord and when at last I pushed her from me, she took a moment to catch her breath. “Say hello to her!” the midwife said, “She needs to hear your voice!” They had taken her to a table where they were working on her, getting fluid from her mouth and nose; her tiny hand clasped my husband’s finger. “Hi, baby. Hi. Hi, baby,” I said, my voice sounding foreign to me, disconnected. “Hi baby. C’mon, baby. Hi, baby.” A cry erupted from her and she sucked in her first breath of oxygen on earth. During my twelve hours of laboring her from me to the world, roughly 180,000 babies were born, statistically speaking, but only one of them was mine.

My first baby I never saw nor heard, but felt, yes. That baby’s exit from my body was not so monumental, miraculous, mythical. It was mechanical, methodical, medical. My breasts ached for that baby who I never knew was a boy or girl, or in between those. I didn’t know. The baby let me let it go, or so I told myself because everything was at stake. I was strong then too, on the operating table, waiting for the doctor. While she sucked the baby from my womb, I was strong. I did not cry or let out a cry. On the hour drive home I laid my head against the cool window of the passenger seat and did not talk, or cry. My boyfriend cried in the backseat. My friend drove us home, and for that I was grateful. During that hour long drive from the clinic to my bed, about 6,000 people died, statistically speaking, but none of them were mine. I might have been numb the but it was mine I knew I would mourn, and even if I knew I didn’t question my choice, I would feel the loss.

Isa Nye has written ever since she could. She was raised in Montana among cowboys and professors, and she turned to the written word to both escape and to make sense of that life. She now lives in the Pacific Northwest with her husband and two young children, and writing still brings her both solace and clarity.

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Guest Posts, Letting Go, Self Care

QUIETING THAT LITTLE VOICE THAT STRESSES ME OUT

August 20, 2020
stress

By Jen Butler

I’ve spent so much of my life doing things to make other people see me a certain way. I talk about my accomplishments or my wounds, depending on the conversation and the crowd and which topic I intuit will most impress. I’ve observed people, learned their likes and their humor, and then adjusted to fit in.

Perhaps this is part of being human. A desire for connection, for a tribe. A desire to be liked.

But I wondered tonight, while folding super comfy pajama pants I normally wear with mis-matched socks and an old lady sweater (but only alone, in the privacy of my own home), “What if people would have liked me anyway? If I hadn’t have tried to be a certain way. If I didn’t exhaust myself with witty banter or getting the last word. What would be different?”

Perhaps nothing would be different. Maybe the same people would be my friends and colleagues.

Or maybe, just maybe, my life would be a little different.

Maybe if I reallocated my credits of “care” toward being myself, standing up for myself, and saying what I wanted to say rather than what I thought would be most popular… Maybe I’d have smile lines instead of the crinkle in between my eyebrows from a near-perpetual furrowed brow.

I stress myself out. And I say that in the most loving way possible. I stress myself out, recognize that I’m stressing myself out, decide to worry less and relax more, then share this awareness with those close to me, all of whom are like: “Yea duh. You didn’t realize you were a bit high strung and super hard on yourself? Glad you’re learning to take it easy.”

And I’m like: OH. I’M DOING SOMETHING THEY AGREE WITH AND LIKE. I SHOULD DO MORE OF THIS.

And so, naturally, I then dive into a very dedicated and regimented plan on how to be the most relaxed person I can be.

I’ve always been irritated by the people who say, “This is just how I am. I can’t change.”

But I realize I’ve been camping out on the other end of that extreme: “I can change everything about myself until I become the exact person I want to be.”

Spoiler alert: the “exact person I want to be” is a moving target, it’s not at all a quantifiable goal, and the comparison between myself and that dream version of me results in my feeling left behind, left out, and generally like a failure.

But it’s not that I feel I’m failing my parents or friends. I feel I’m failing myself.

I feel a compulsive need to be “good” and think only good thoughts, say only good words, and take only good action. And any time something goes poorly in my life, I tell myself I wasn’t good enough and I must have manifested it with some sort of negative thinking, and I must do better.

While walking my dog today, I marveled at the white fabric peeking out from my shoes and the fact that this was the first time I’d gone in public without no-show socks. I was wearing the “wrong” socks for the shoe choice. This would have been debilitating to me in the past. (+1 point for progress, Jen!) (But -1 for poor style, which could fall under the genre of poor self-care.) (Net zero. Try better next time. Do not pass go, do not collect $200.)

I smiled at the socks, and continued the self-analysis work I’d been doing all day (and most days). I was scanning my brain for limiting beliefs and negative thoughts so I could eradicate them all with my laser beam vision, which stems from perfectionism, which stems from seeing myself negatively rather than lovingly. I was trying to stop negativity with something that is, by its very nature, negative. Trying to fix my thoughts with my thoughts.

I then had the thought pop in my head of “restriction,” and I remembered my relationship with food when I struggled with disordered eating.

I obsessively labeled foods as good and bad, shaming myself if I ate or craved a bad food, and feeling a temporary relief (combined with a bit of elitism) upon consumption of good foods. I knew there was factual evidence backing up certain foods being healthy and others being unhealthy. This was the perfect thing for me to control! I will be the healthiest eater ever!

Until I realized that food itself stressed me out, no matter the type. And consistent stress is far more harmful than occasionally eating a bowl of Life cereal.

I removed the labels of good and bad around food and instead re-learned how to trust my body and its signals.

My relationship with food and my body are both healthier than they’ve ever been. It’s not perfect. I sometimes still stress out over end-of-the-world stuff, like running out of vegetable juice, and then my boyfriend talks me back to earth. Overall, it’s much better and life feels easier.

Today, I realized I’ve been treating my thoughts and self-work the same way. I’ve found a new application for perfectionism and obsessive compulsion: monitoring and judging my thoughts and words.

It’s like a proofreader’s dream: “Your job is to tell me what’s wrong with everything I’m thinking, saying, and doing.”

I’ve rarely ended a day without a needs improvement stamped on my forehead, in the shape of a deepening brow crease. If I feel accomplished on any given day, I feel relief rather than celebration. “No negative points today, Jen. Now just do every day like today except a little bit better and then you’ll be positive and get everything you desire.”

Is anyone else stressed out reading this? I’m stressed out writing it, while also feeling so fucking free for owning how I feel and how I experience life.

Yes, I believe it is true that our thoughts and feelings and actions and words create our reality.

It is also true that we are here to have a human experience, which is imperfect in its very nature, and I personally think it’s far healthier for me to let the fuck go and allow for a natural progression of life than to try and control every word, thought, and step.

Because even if I say everything positively and in alignment with my positive new belief system, I’m still doing it from a place of fear. And stress. And furrowed brow-ness.

What’s in between “This is just how I am; I can’t change” and “I’m gonna’ change everything so I can be perfect.”?

I don’t know. I’m thinking it’ll find me. And I’m thinking it starts with removing the labels of “good” and “bad”.

Did you know I lost the extra fat on my body when I removed labels on food, even though I increased the “bad” foods and decreased the “good” ones? It’s because I stopped giving them so much power. I learned what it felt like to feel actual hunger rather than approaching diet analytically as if I was a research project.

If my brain is ever like, “OH NO YOU SHOULD GO EXERCISE OR YOU’LL GET FAT,” I will march my happy ass into the kitchen and eat a “bad” food and be like, “I refuse to exercise with that mindset or to be held captive by it. So this chocolate is code for FUCK YOU.”

And then I eat it.

And then the thoughts shut up because they don’t know what to do with their hands. And the stress immediately leaves.

And do I get fat? Nope. I’m the fittest I’ve ever been. Truly.

I’m not sure what the equivalent will be for the self-help, self-analysis stuff. Maybe it’s as simple as removing the labels and seeing what happens next. Maybe if I find myself being all like, “Oh that thought was bad, -2 points, and now you’ll attract negative things from the Universe” I can respond with something like “Gosh I sure hope my head falls off” or “Fingers crossed for food poisoning!” or “I sure like the word ‘c*nt’ even though it pisses people off.”

It’s the same approach recommended for people to escape other perfectionistic or anxiety-ridden tendencies. For instance, folks who nervously sweat can start being like, “I’m going to sweat more than I ever have today. Gallons of it. GALLONS!” And, in time? The nervous sweats stop.

Yea, seriously. It’s real.

So, while all y’all Love and Light Brigaders are telling your clients that the reason their lives are the way they are is because they need to eat clean and that their thoughts aren’t perfect enough, I’m going to be eating chocolate and exclaiming “CU*NT!” from my basement apartment while wearing a grandma sweater and mis-matched socks.

Maybe it won’t get me out of my apartment. Maybe it won’t bring me abundance. Maybe after a surprising unexplainable beheading you can be like, “I knew Jen before her head fell off.”

But, in the meantime, it’ll be a helluva lot more fun. And maybe, in the process, I’ll gain some smile lines.

Jen Butler is a comedic real-talk writer and artist in recovery from alcoholism, addiction, self-harm, disordered eating, cancer, Breast Implant Illness, and a weird period of time when she only listened to dubstep. Her passion is helping people feel less crazy and alone by openly sharing her own experience, strength, and hope. Her portfolio, books, and one video with a flamingo puppet can be found at www.jenniferannbutler.com.

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