Browsing Tag

health

Guest Posts, chronic pain, Writing & The Body

Unnatural State

April 13, 2022
pain

2016-present

I first noticed the pain in my leg when I was four months pregnant with my first son. “Sciatica,” everyone told me. After all, it was a plausible enough explanation. Even my OB/GYN kind of shrugged and said, “Eh. Nothing you can do about it. ”

But after a vigorous round of Google hunting, I privately ruled it out and didn’t bring it up to the doctor again.

The sciatic nerve runs down the leg. This pain was incredibly localized, deep within in the hip joint, almost at the groin, but not quite. It’s a nebulous spot that is so buried it feels like it shouldn’t exist. In fact, it was right where I had injured myself eight years earlier, stretching too fast and popping a tendon. Somehow, for some reason (most likely the avocado-sized lump in my uterus), the tendon was hurting again. I couldn’t sleep on my side, couldn’t walk comfortably. It felt like if I stretched, the tendon would snap, and I would become an actual Gumby.

The pain went away almost immediately after I delivered my first son. Poof. My body was accessible to me again. I could sleep on my back. I could sleep on my side. Bliss.

Sadly, after my second delivery, the pain made its home in my hip socket permanent. It revives itself when I do too much. Too much walking. Too much squatting. Too much sitting. Too much feeling.

This was two and a half years ago. Now, I accommodate the pain. Keep weight off the hip. Strengthen the surrounding muscles. Don’t push myself too hard.

My life is an exercise in accommodation.

February 2021

The pandemic has dissolved so much from my life.

Work. I had some at first and it drizzled away, as if there were a crack in the floor of my career and all teaching assignments just slid down.

All the ordinary happenings in a life are gone. Spontaneous trips to get ice cream, pop into a shop, play at the park. Vanished.

My friendships have shifted, melted, and scattered away. Texts are fragmentary check-ins.

How are you doing?

Hanging in there.

Same.

Can’t wait to see you again.

Miss you.

Love you.

Some friends already do things with other people, make plans, and see each other at a distance. I try to do it a few times, but each time my kids struggle with the idea of personal space, spilling all over each other like the four and two they are. Unshackled in their innocence, unbound by science. It is my job to keep them safe, to keep my immunocompromised husband safe, so I stop making plans with people. Eventually, people stop asking me.

I am equal parts sad and relieved.

The world contracts significantly. These boys who became my world when they were born are now, quite literally, my world. They occupy my every waking—and sleeping—moment. I sleep with the youngest one, who sneaks into bed as I am in deep sleep every single night. I don’t notice he’s there until I awaken next to his warm, lavender-chamomile scented hair. I tote him around like an extra limb, as he needs a little more of me than my eldest did. More holding, more snuggles. His twenty pounds has enlarged over the course of the year, and now it is like permanently lugging around a squishy, wiggly set of dumbbells.

And the talking. Dear god in heaven, the talking.

Mama, can you get me some more ketchup?

Mama, he took away my medical kit!

Mama, he pushed me!

Mama, I want some chocolate milk.

Mama, did you know that T-rex is my favorite dino?

Mama, this is not the right toast! I said I wanted jelly toast!

The litany of name repetition wears on me. Being forever needed.

What do I need?

1982-present

I am no stranger to pain. In fact, we are often friends. If something does not hurt on my body, if something is not malfunctioning, then I find myself shifting my weight uneasily, stretching out, testing its limits. Chronic childhood tonsilitis. Chronic rhinitis. Chronic knee pain from worn away cartilage. A respectable inventory of broken bones. Aching pre-arthritic joints. Chronic recurrent virus, or whatever the medical community is now calling long-term recovery from a rare virus they know nothing about. Childbirth, twice. DTs—cool alcoholic lingo for delirium tremens—otherwise known as detoxing. Abuse.

I could go on, but it gets boring, all listed out like that. Pain is unremarkable and unremitting. How it affects you is what makes it interesting.

2018-2019

The next pain like this—unexpected, arriving without warning nor acute injury—came to me after my second son, in my left arm, at the shoulder/bicep intersection. I clearly lift too much weight, too often. This is a stress injury from balancing babies on my left hip without ceasing. I sit them there while I cook, make phone calls, walk around the house picking up tiny kid crap. Discarded shoes. Duplo Legos. Cheese-It fragments. I lift the car seat to-and-from the car, to-and-from the stroller, to-and-from the shopping cart.

“Stop lifting the babies! You’ll just keep reinjuring it!” my husband scolds with care and frustration crumpled together in his brow, knowing I will not listen to him.

Who else will carry them all day? They are babies, both under three at this point. One a living, breathing football-sized lump who cannot move around unaided, and one still not potty trained. I am taking an unpaid semester off teaching, so the answer is me. I will carry them all day.

December 2020-March 2021

This year, the year of the pandemic, there are some new pains in the mix. I sprained my ankle and/or broke my foot. I am too chicken shit to go to the ER and get an X-ray, so I wait three weeks before visiting my primary care physician, tail between my legs and brace on my ankle.

“You think you broke your foot, and you waited three weeks to seek medical help?” the doctor asked, trying to hide his incredulity. I really don’t like my doctor.

“I mean, the sprained ankle is bothering me most,” I add, as if that makes one iota of difference in the situation.

In fact, this is the second time I have sprained my ankle, and the second time I ignored it.

February 2021

It is starting to get ridiculous, though. For the past few weeks, I have noticed pain in my elbows. It gradually, steadily worsened until I couldn’t lift my coffee cup with my left hand anymore.

“I can’t lift my coffee cup,” I say one morning, surprised by my arm’s inability to power through. It’s just a bit of pain, right?

“For god’s sake, go to the doctor,” my husband says, eyes on his phone. This is not the first time he has said this.

I don’t usually complain about my pain. I point it out, like pointing out a Volkswagen Thing or a building with Art Deco friezes. Unusual, but certainly nothing to pause life over.

“This is why we have insurance,” he reminds me. I actually need reminding, because I forget this all the time. For most of my life, insurance was strictly aspirational.

2020-2021

Clearly, I am fraying at the edges. Not just at home, not just in my body. With so much in real life suspended, I have come to rely a lot on my online friendships. Then, a few people I think of as good friends stop interacting with me. They just…disappear. What are these relationships, that I think about and am invested in for so much of every day?  Honestly, I am not sure. I care deeply about a lot of these people. Do they care about me? A specific interaction with one person leads me to say no, but the follow up interactions from a dozen friends asking if I’m okay lead me to say yes. The data is unclear.

My time online is now fraught. Are my friends going to be fighting? Am I going to be able to remove myself emotionally from this? Will I obsess about someone who is ignoring me? Will someone say something that hurts my feelings? Will I feel left out alone, ostracized, wrong, unaccomplished, stupid? Will my anxiety prevent me from being present with my children (again)?

I am rapidly approaching middle age, and suddenly notice that I am spiraling, as if this were high school, with the power to provoke tears and agony over my social status. This realization drills into my very core. I started drinking to stifle feelings like this, impulses like this. The way I twist myself into pretzels to gain people’s approval. The way I enter into everyone’s problems and embody them. The way I agonize about the wrongness of everything about me.

Though I don’t leave the house much anymore, don’t see anyone beyond my immediate family, I remove myself from Facebook.

1982-present

A few years ago, I found out I have hypermobility. I can do the splits and bend my arms in unusual ways. This causes a host of joint and muscle problems I won’t go into, but the chronic knee pain has been the hardest to deal with over the years. From stress and misalignment, my bones pull my cartilage out of place. The only ways I can alleviate the pain is to build supportive muscles in my legs and force myself to walk with my legs straight. This feels unnatural, but also relieving. As if being myself is an unnatural state that needs correcting.

February 2021

“Tennis elbow,” the doctor said almost immediately when I pointed out the location of this pain, new pain. “When the muscles are overworked but underdeveloped, the tendons get strained.”

Goddammit. Tennis elbow? From what? Wiping butts and lifting babies?

Oh.

March 2021

By the sixth week of wearing the ankle brace, my ankle is decidedly not better. I up my physical therapy routine, the one recommended in the pamphlets my doctor thrust at me. In addition to tracing the alphabet, caps and no caps, with my foot, I now add some stretching and lifting exercises. What I do not decide to do is go back to the doctor.

The absence of my once-daily walk is beginning to wear my edges even further. Physical exercise helps keep the madness at bay, behind the bars of its cage. Recovering addicts have little in the way of traditional coping mechanisms, after all. I stretch out obsessively, like a rubber doll.

I write a lot more. I stay off Facebook. Do my friends even notice my absence? I wonder what I’ve missed. I try to sit with the discomfort, like the therapists and mindfulness gurus instruct.

This is uncomfortable. It is okay to be uncomfortable. This will pass.

This is the first time I have ever tried this in my life. Letting myself be uncomfortable. It sort of works. I hate it.

April 2021

“Mama, hode me. Hode me,” my littlest says, big brown eyes and chubby cheeks my undoing, as always. I relent, picking him up, and immediately regret it as my forearms burn. But I don’t put him down. How much can I carry before my arms fall off, the ragged seams finally giving way and disintegrating?

March 2021

I speak to so few people my voice starts hurting after reading to my kids that night.

April 2021

Here I sit, wrapped ankle shoved uncomfortably into shoes not designed to accommodate a walking brace, arm wrapped in another brace that supports the weary tendons. I lift my coffee with my other hand, which also hurts, but not as much. I don’t get up when the kids call for me because I can tell they’re just bickering. I pick up a book and ignore my loneliness.

March 2021

“The ankle looks fine,” the doctor said, when I come back in for a follow up to the x-ray I finally got around to getting. “No break. Just a sprain. Is it bothering you?”

“Not really, not anymore,” I lie. It just comes out of my mouth, unbidden. Reflexive.

What is a little pain?

In truth, it was throbbing because I tried my luck without the brace today. After eight hours of excessive care, gingerly stepping over piles of Magna-tiles and spilled ketchup, the ankle was protesting. It was protesting motherhood. It was decrying its lack of support. It was renouncing this goddamned pandemic.

The doctor didn’t ask about my tennis elbow, and I didn’t bring it up. What I was really there for was a referral to a therapist. I could handle the physical pain, which was fading, anyway, what with the help from physical therapy exercises. And who ever died from tennis elbow, anyway?

February 2021

Scrolling on Facebook for a minute, I check in so that my account doesn’t disappear forever, and realize there is nothing there for me. I don’t belong there—right now, at least. I won’t until I am able to weave myself back together. A sturdier, more complete version of myself. I have no expectations for when this will be.

March 2021

The pandemic is ending, according to everyone. One day our hospitals were spilling over with COVID patients and exhausted healthcare workers, and a few weeks later L.A. County is opening up indoor dining again. I have half a dose of the vaccine. It is positively surreal: a miracle through and through. This is almost too much to cope with, and I randomly cry at the sight of a favorite restaurant welcoming diners or kids at the high school playing team sports. The thought of resuming my old life, though?

I don’t want to go back. I am fundamentally different now. I can’t go back.

I sit with these prickly feelings. I let myself cry and I let myself feel the pain. I bathe in this discomfort.

It will pass. No pain is permanent.

It changes shape and we build walls around it, accommodating it, crushing it, suffocating it, allowing us to move on with life even as it controls so much of what we do. It can become part of us, shaping who we grow into like strange casts. And if we have the patience, we can listen to what it is telling us about ourselves.

Are you listening?

I am, now.

Natalie DeYoung is a writer from the Los Angeles area. A winner of Blogher’s Voice of the Year twice, Natalie DeYoung was also invited to read her selected essay for the keynote at Blogher 2016, as well as perform as a guest judge for Blogher 2017. She has been has been a freelance writer and contributing editor at YeahWrite since 2013. An adjunct professor of English, she is currently working on a memoir about her experience with recovery from addiction.

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Writing Cohort Opportunity

Circe is offering: Crucible – A Year-Long Writing Cohort 

Let by Gina Frangello and Emily Black, this cohort is designed for writers seeking to spend a year deeply immersed in writing or revising a book length work.

Cohort Includes:

  • Once monthly class meeting over Zoom
    • 2-3 members will have their pages workshopped per meeting (each participant will be workshopped twice)
  • Every other month individual/private meeting with Emily or Gina over Zoom (participants will have a chance to work with both)
  • Ongoing online communication between members of the cohort to share resources and ask questions in between sessions
  • Writing prompts
  •  100 manuscript pages read and reviewed by Emily and Gina

Email info@circeconsulting.net for more information

***

Statement on Black Lives Matter and support for social change

 

 

Guest Posts, Health, travel

My Japanese Handkerchief Masks

April 12, 2021
Japanese

by Wendy Dodek

During this pandemic my thoughts turn to Japan, a country where masks are part of daily life. Yet not so many years ago I ignored a mask offered to me. I knew Japanese etiquette yet scoffed at wearing a mask.  I then proceeded to infect my Japanese friends, not with a deadly disease but a generic cold.

Perhaps, that is why, early in the pandemic, I took an elegant Japanese handkerchief, and with a few simple folds and two rubber bands made a functional mask as a shield against the coronavirus. My self-made mask has soft green floral patterns, made from a handkerchief I acquired when I lived in Tokyo over 30 years ago. It was part of a gift box I received from a group of nurses.

Every Friday night I’d leave my tiny apartment, walk 15 minutes and board the orange train. After 30 minutes, I transferred to a bus for another 20-minute ride to reach the Kyorin University Hospital where I taught English to 12 young nurses and one older nurse-supervisor. At the end of every session, with a deep bow and two extended arms, supervisor Miss Kikutake would hand me my fee, the yen placed in a small envelope. In addition to the money, this tiny woman with gray speckled hair would raise her arms and hand me a beautifully wrapped gift.

It’s customary for patients, about to be discharged, to give farewell presents to their nurses. I believe most of my presents came from this never-ending supply of gifts. What to do with the surplus of Japanese sweet bean treats, cookies and handkerchiefs? Give them to the English teacher. When I first received handkerchiefs, I was baffled. I never used handkerchiefs in the US. I thought of them as old-fashioned and unsanitary. I’d rather blow my nose in a tissue and then quickly discard it. Yet no Japanese person would leave home without carrying at least one handkerchief. And never would those handkerchiefs be used for nasal secretions. What a horrifying thought to Japanese.

Over time, I learned handkerchief culture and I too, carried them in my purse. I carefully would choose based on the seasons: cherry blossom pinks for spring, crimson maples for fall, purple irises in summer and some forgotten winter pattern. Like everyone else, I would take my handkerchief, dab my forehead during the sweltering Tokyo summers and dry my hands after visiting restrooms that offered no towels.

When I returned to the US in 1988, I brought home about 50 new handkerchiefs of exquisite colors and designs. I offered them up to my American friends although many seemed puzzled by these beautiful cloth squares. I then began to use them to wrap small gifts, instead of traditional wrapping paper. My closet now has just six handkerchiefs left. Just enough to repurpose them when the US medical community reversed course and urged the public to wear masks.

I doubt if any Japanese person would think of my handkerchief creation as a proper mask. The blue surgical variety are a common sight in Japan, long before this virus appeared. Have the sniffles? Wear a mask. Allergy season? Don a mask. Shortly after I moved to Tokyo in 1985, I saw a subway engineer in his prim blue uniform, matching tie and cap, and face draped in a mask. My newsletter home was entitled, “Riding on a Train Driven by a Masked Man.”

I lived for three years in Tokyo with occasional head colds but never considered wearing a mask. It would just get in the way when I needed to sneeze and blow my nose, I reasoned. Wrong attitude. Japanese do not blow their noses in public, instead they sniffle. That snorting sound may be unpleasant to Westerners, especially on crowded rush-hour trains, but preferable to Japanese.

The first time I was given a mask to wear was just eight years ago on a return visit to Japan. Within a few days of my arrival in October 2012 I developed a scratchy throat and tickly nose. Unfortunately, my husband and I had already embarked on a four-day excursion out to the countryside, accompanied by two Japanese friends. Together we stayed in an 18th-century farmhouse and all four of us shared one large guest room, family style. Each person was given futon bedding, which was spread out on the earthy tatami straw mats. Limited heat came from the smoky hearth in the center of the house. By the time we arrived at our next destination, a hot spring town, I could no longer hide my cold. My Japanese friend took me to a drugstore where the pharmacist prepared medicine and tossed two masks into the bag. I was standing by my friend and I imagine she noticed the masks but didn’t say anything. Perhaps, she wanted to see if I would wear one.

I put on a mask just long enough to pose for the camera with sad eyes and slumped body. My expression screamed, poor me, I am sick! But I was just posing. After my husband snapped the photo, I ripped off that mask with no intention of wearing it again. How could I blow my nose, which was running like a faucet, while wearing a mask? And how would I cough wearing a mask? I did not think about how Japanese manage or if my friends would contract my cold.

Over the next few days both of my Japanese friends (and my husband) got sick. I felt like a selfish foreigner, willing to contaminate my friends with my germs. All those years I had prided myself on being a good “gaijin”(foreigner) in Japan. Good foreigners do not lick ice cream while walking down on the street. They did not chew gum in public. They do not speak with a loud voice in the subways. And yet here was proof, I was a self-centered foreigner.

When my friends got sick, I expressed remorse for contaminating them but wondered if I should apologize for not wearing a mask. I had known these women for 25 years yet I didn’t know how to respond. My Japanese friends did not say anything, no overt recriminations. They acted like nothing was wrong. They said their colds were mild. Yet they immediately covered their faces with masks when their symptoms arose. I sensed they were disappointed in me, the person they viewed as better than the stereotyped selfish Americans.

In the US, the public is being urged to wear masks. So why not use my Japanese handkerchiefs? I reached into the back of my closet and examined my unused stock. Not my favorite handkerchiefs, those were all given away. Still, I can be draped in fashionable Japanese cloth and hope for protection – for me and for all those around me. I can picture Ms. Kikutake’s smile as she handed me box after box of treats, some to be consumed quickly and others to last a lifetime.

Wendy Dodek was the Lead Educator at the Museum of Fine Arts, Boston until the pandemic. See also teaches art and history related ESL courses for recent arrivals to the US. Her interests include arts, travel and writing.

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Blow Your House Down is a powerful testimony about the ways our culture seeks to cage women in traditional narratives of self-sacrifice and erasure. Frangello uses her personal story to examine the place of women in contemporary society: the violence they experience, the rage they suppress, the ways their bodies often reveal what they cannot say aloud, and finally, what it means to transgress “being good” in order to reclaim your own life.

Pick up a copy at Bookshop.org or Amazon.

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Anti-racist resources, because silence is not an option

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Click here for all things Jen

 

Guest Posts, aging, Health

Resonant Imaging

March 10, 2021
mri

By Cynthia Stock

I recognized the radiology tech, a gray-haired woman named Danielle. A ponytail, looking as apathetic as Danielle could look after a long day, limped down her back. Lufkin, Amarillo, and North Dallas complicated her lilting drawl. She didn’t recognize me, but I remembered her.

Shortly before I retired, I transported a critically ill patient to Danielle’s subterranean world. The MRI room reminded me of the Chilean miners, trapped for days without light or contact with the “real” world, struggling to stay sane while facing off with death in a very small space. My patient, fully equipped with a ventilator and nine life sustaining IV infusions, required two ICU staff members and one respiratory therapist to travel to MRI. When we arrived, Danielle’s face collapsed into a web of wrinkles.

“I don’t think we have enough MRI safe pumps for all those drips,” she said.

I knew the patient’s blood pressure hardly tolerated a quick change to fresh IV tubing, much less a complete stop of one of the drips. “Let me call the doc.” I don’t remember which one. None of the doctors either experienced or understood the logistics of taking an ICU patient to another universe far, far away from critical care for a diagnostic that ultimately, would not, could not, alter the plan of care. After a terse risk-benefit analysis and an explanation of the equipment dilemma, the doctor canceled the order.

“I’m so sorry,” Danielle said, resigned. Her head nodded, side-to-side. I remembered using that gesture to voice my own frustration with job responsibilities. Her body expressed regret more clearly than any words.

“Not your problem. Thanks for trying.”

Danielle helped push the patient and his mechanical paraphernalia down the hall to the elevators, something some of the younger techs would never do. Danielle and I, almost the same age, found ourselves conjoined by a dated work ethic.

Facing my own MRI, I slipped into my “health-compromised” persona. Danielle explained things about the MRI as if I had no medical knowledge. That was okay by me. I laughed at the irony of MS, not a master’s degree, although I had one, but Multiple Sclerosis. The acronyms gave me two separate identities, neither complete. My first symptom of MS appeared in the early 70s.

Fresh from nursing school I remembered all the landmarks I memorized for my anatomy class. Mixing some sterile saline in a vial of the white powder of some antibiotic, I bumped the plunger of the syringe against my wrist. It felt numb. I finished giving the drug to the patient. Then I traced from my inner wrist up to my elbow and mapped the roadway of my radial nerve. No feeling, cause unknown. Just as mysteriously, the feeling came back.

I didn’t interrupt Danielle’s explanation of the procedure, didn’t ask if she remembered me or our day of futile labor. The almost saccharine sweetness of her voice grated, but then it soothed. Or maybe it was the Xanax I’d managed to sneak before a tech led me though the labyrinth of the radiology maze. I was almost ready for the forty-five-minute claustrophobia challenge.

I often I wrestled with feelings of invisibility, except when it came to my career. I didn’t often tell people I was a nurse. At the gym, I didn’t want to hear about poor nursing care in such and such hospital or offer information in conflict with doctors who practiced medicine by recipe rather than individualized care. I only allowed my family the luxury of free nursing-medical advice. For my MRI, I didn’t want to be the retired nurse in MRI Room 2. You remember her, she took her job way too seriously. Such a control freak. I wanted to be the frightened, anxious person who loved to workout, read, write, hold her husband’s hand, and dote on her two new kittens.

Danielle secured my head in a padded support as if it were a precious piece of art in need of safety and stability. Six ceiling rectangles boasted a beach scene complete with striped beach chairs and cherry red umbrellas. I weighed the benefits of wine versus margaritas at the beach, while Danielle admired my ample veins, poked my hand, and inserted an IV. So far, so good.

“I’m gonna flush it with a little saline,” she said.

A jolt of cold shot from my hand towards my elbow.

“Do you know what we’re looking for today?”

I knew what I was hoping for, no new white spots highlighting a most unpredictable, aggravating disease. “They want to see if my lesions are stable.” Since I’ve had to stop taking my Tecfidera. I remembered losing seventy pounds in six months and then losing sensation as if I’d had what in the old days was called a pudendal block. Dammit, since retirement I can’t afford the drug that enabled me to work at the bedside for forty years. I didn’t say what I felt, nor did I mention the meningioma nestled like a pearl in the oyster of my frontal lobe. Anger can kill you just as easily as any disease.

Sixty-seven-year old backs become ardent protesters with immobility on a flat surface. Danielle eased a triangular pillow under my knees. My back stopped complaining. When she snapped the plastic cage over my head to keep it perfectly still, I ordered myself not to open my eyes again until the test was over. I’d done that once. Through the plastic matrix I saw an infinity of ivory plastic looming inches away from the length of my entire body. It closed in on me and spawned an adrenalin rush so potent I started screaming. “Let me out. I can’t do this.” Not this time. I had to get this done.

Danielle’s voice changed into a something hollow and distant. The table shuddered and moved by inches. “We’re gonna get started.”

I clutched the call bell, my panic button. It was soft, round, no bigger than a plum, but knowing my body slid through the gullet of a heartless, automaton, it became my lifeline.

I wanted to shout at the sounds. First a riveter. Then a jackhammer. A soprano wasp nesting in my ear. The thunderous NUNUNUNUNUN. I wondered about damage to my hearing. The sounds shattered any sense of time. The bane of my MS existence, bladder urgency, remained at bay.

Unlike other techs who occasionally chatted over the intercom, Danielle remained quiet. So quiet, I imagined the worst, a national crisis requiring all employees to go to designated posts as part of a disaster plan. A bomb threat that cleared the building and left the helpless and entombed. My favorite, a zombie apocalypse where the only safe place to hide was an MRI machine. A new story line for The Walking Dead. After a brief hum, the riveting started again.

I made it through the MRI. Danielle helped me sit up. My head spun for half a second. Danielle held my arm for support when I jumped off the table and headed for the dressing room. Danielle never recognized me. However, when she grabbed me, for the first time I noticed she wore a compression sleeve on one arm. The well-worn seam suggested Danielle had worn it for a long time. With retirement, I saw things differently. With retirement, I saw different things.

After forty plus years as a Critical Care Nurse, Cynthia Stock is in the process of reinvention at the age of sixty-nine. Writing represents a great part of that and Cynthia’s work can be found here. We are thrilled to be part of her journey.

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A book about tears? Sign us up! Some have called this the Bluets of crying and we tend to agree. This book is unexpected and as much a cultural survey of tears as a lyrical meditation on why we cry. 

Pick up a copy at Bookshop.org or Amazon.

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Anti-racist resources, because silence is not an option

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Click here for all things Jen

Guest Posts, Chronic Illness, 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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Anti-racist resources because silence is not an option.

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THE ALEKSANDER SCHOLARSHIP FUND

 

Guest Posts, aging, motherhood

Well Played

April 23, 2020
run

By Natalie Serianni

The buzzer sounds as I pull up my white soccer socks. It’s freezing; I can see my breath.

I’m inside.

Inside but outside. An old airport hangar converted into a three-field soccer complex.

The scoreboard reads 10:52 pm.

The game is a few minutes late to start, people like ants piling on to the pitch.

It’s familiar territory, this kind of a field; my home for at least 20 years of my life.

The highlight reel:

Suburbia 80’s soccer: Members Only jackets on the sidelines; my mother, her frosted hair and Reeboks cheering and clapping as we whizzed by. Kids running around orange cones or picking flowers in the corner. Learning to kick. To run.

Elementary soccer:  Billy Ocean blaring as we drill, drill, drill. Stations: moving us along down, down, down the field.

Teen games: Sweltering summer games. Cold washcloths, straight from the Coleman cooler, strategically placed on wrists and necks. On the face, the faint smell of Tide during an inhale. Calves aching, but young bodies craving movement. Able to rest, play. Repeat.

High School: Hot sun and short shorts. Boys. Are the boys looking? Here comes the boys team. Learning how to play dirty. Sitting on busses. The spaghetti dinners and “We will Rock You” piped through the PA. Warm up tapes, mixing the power of Public Enemy and Led Zeppelin. It was theatrical: the show, the spectacle instead of the game. There were parents in the bleachers; my father at every game. Home or Away, home or away. On the cusp of a bigger game.

College Soccer: Always away; so far from home. Different state, different soil. So many sprints. Practices that were competitions. Late nights lit by black lights and Rage Against the Machine in cement block dorms rooms. Hung over mornings that began with pushups, noses tickled by fresh mowed grass, trickling temple-sweat. It was four years too long.

The muscle, the memory. That competitive monster. It does not fade.

And now, present day: Indoor and on the team. 43. I’ve returned. I’ve paid my dues. I paid my registration fee and there won’t be a trophy. Or an end of season banquet where we don something other than sweats and eat Chicken Marsala in a Holiday Inn conference room. 40 year old soccer is having carpet burned knees and burning lungs. After-game pitchers of cold Coors Light and forty year olds circled around a table, talking about “sweet shots” and back slaps with Nice move out there! Sweaty socks, tiny turf bits falling out as we munch stale, hours old popcorn under buzzing fluorescent lights. It’s the joy of knowing I’ll be sore for two days; my husband tucking my babies into bed. Returning home to a quiet house. A lone, dim light above the oven, my midnight invitation to solitutude. A late, silent shower.

There is freedom on that field.

An ability to fly. Away from preparation, or list-making, or lunch-packing for others. The anchor of motherhood and other demons temporily lifted.

It’s a game and I’m playing.

It’s just play.

And I’m just a mother running and running.

Finally, running.

***

Running was my extra-curricular activity as a women’s college soccer player.

I was running to stay in shape; training for the next match. Preparing. And also, strangely,  whittling myself down to a muscle; stripping away to the leanest version of myself. Past the woman I hated; past the woman who had to be playing a sport. I ran away from myself, from my disdain, running at 5:30 in the morning to think, and think and think and think and think

…about how much I hated playing soccer.

How much I hated my body for playing this game that was no longer a game.

I remember being a college sophomore in a dank, sweaty basement gym, floor fans blasting at 11pm.

Alone.

My old monster: Working out. Losing all traces of myself.

Fanatically exercising. An hour plus on the Stairmaster was normal. Push down, push down, hold on, hold on. Whoosh, Whoosh, whoosh, whoosh.

Incremental Red lights on the machine dashboard, dots, Screaming: go faster! Push harder! Pulsing: Don’t slow down! 275 Calories to go! Dripping with sweat, my hands slipped off the black handrails. Add a scratchy white hand towel and the sliding became more comical: the towel and I slipping further down the machine. I prop myself back up, my sweaty body hunched over the machine in agony, pushing myself.

And this was after two hour practices on the college soccer field.

Self-sabotage. I had to work it off because bigger, stronger, meant fat.

I wasn’t. I was a muscular 20 year old woman playing a collegiate sport, feeling betrayed by her body’s strength. Where it showed; the armor I created. I needed the heaviness gone.

Why did I confuse strength with size?

More Cardio. More stairs. Only eating small sections of apples. Maybe a few raisins.

The cycle continued for a year, my legs becoming chicken bones.

Can a competitive sport turn you into the opponent?

Trying to disappear, shaming myself away from my muscular thighs and too-strong arms.

To combat this, I:

ran at odd hours and ate salads with no dressing and drank hard liquor since my college friends told me there were no calories and wore too baggy jeans and woke up starving in the middle of the night and dreamed of delicious cheese-y lasagna all while I could not brush the stench of hunger from my breath. 

There was a warped, seductive power in wearing a white v neck t-shirt with your clavicle peaking out. It screamed small. In control. Look at me, dammit. See me. I’m more than the game.

My body wanted nothing to do with this warfare. It didn’t fight back. It collapsed. A non-female body; period loss for a year and a half. Complete disconnection.

There was running. Morning miles and marathons. Hip flexors tight from repetitive repetition.

There was pulling: a row machine. Picking up: Black dumbells from their home on the rack.

There was pushing: leg lifts. A heavy bar away from my chest.

And later, babies.

Mothering is its own kind of sport, birth the ultimate sporting event. There are not many spectators, but the world has a wager on you.

Growing big and small, and big and small. The weigh ins. Once, both of our growths recorded on charts, listening for two heartbeats and placing hands with measuring tape on bellies. There was a pre-game type of excitement, energy and even anxiety: delighted worry mixed with sweet longing.

Two different babies, two different births: a 15 hour overnight labor; a quick two hour event. No medications. Contractions that split my body from its core; hunched over on all fours. Reaching through legs to pull out my bloody heart.

I pushed, plumbing my body for a strength I didn’t possess. Searching inside, trying to get out of my own way.

And then, the after. Lightness. Relief. Like the athlete, there’s recovery. Loss of fluids, blood and energy. To be replenished.

There is a sweet decline. Loss. The gestational heft that buoyed you both, your plump – the admirable warrior who carried and grew another.

Then, moving on to figuring where you fit: new mom groups, old jeans. A new life.

The focus is on the baby. But it’s also about you. Where are you?

Nine months at the mercy of a growing body: cells restoring, blood volume doubling, hearts beating simultaneously. Placenta placement? Fine. Baby measurement? Small, but healthy. You after birth?

Just you wait.

I made an intentional choice to be big, not small in mothering –  done listening to me tell me I wasn’t up for the job. I could no longer be steam rolled by my inadeqauices. Or my core-shaking anxiety: that my baby might slip through my fingers and fall on the hard wood. That I couldn’t drive with a baby in my backseat. The imagined terror that she would tumble off the overpass while strapped in the stroller. Or stop breathing without my hands lightly on her chest, feeling for movement at 3am.

I’m left to wonder about mothers, the wounds we have. The weight we carry.

Are we ever in control?

It’s what we all know: it’s work to keep the motherhood monster in the cave. The one that consistently tells us we’re not winning, but failing; we’re doing it all wrong and one step away from messing up our children. When I can’t control, I manipulate: my mind. My body.

No more.

I question my ability to protect my child. It haunts me at night. But I name my faults and know my weaknesses. I know the enormity of living a life. There, I find myself.

***

Motherless at 25, my body was betrayed. Again.

My stomach felt it first; a sucker punch to the solar plexus.

Aching: on and on and on, through the fibers of my interior.

Her body was betrayed, too: a stroke. So fast. Was there a chance for her?

For recovery, for a life?

After eighteen years of grief, I’m finally, nearly, out.

The body does, indeed, keep score.

There is emergence: the catalyst was my baby born on September 2nd. Also, My mother’s birthday. And, also, the day my mother died. Eighteen years before.

September 2nd.

At the dawn of my daughter’s life, I’m taking my mother’s lifeless, leftover years and converting them into a kind of currency.

I’m ready to play again.

I’ll slide quarters into the machine

Put me in coach I think to myself.

I gather my curls and rake them into a ponytail.

I’m warmed up, I’m primed. Loose.

I’ve loosened around my mother’s absence.

In returning to the void, I’ve found connection. Connecting me to her, me to my body. There’s power when you inhabit what you fear. Loneliness. Longing. My body used to be a container to evacuate, curse, question and crush. Today, I can embrace. Even when grief’s tentacles have taken over the ship, how we become our bodies dictates our course forward.

***

“SUB!!!!” I hear my teammate scream from the field.

I scan the field for her voice. I look to the clock: 2 minutes and 37 seconds left in the game.

I tuck my shirt in.

I’m looking forward to that field.

I wait for her to run over. She looks me in the eye, and our sweaty hands slap each other.

At the same time: “Good work out there” I said, starting my jog.

“You got this,” she says, breathless, winding her run down to a walk.

Let me out there, I think.

Watch out, I think.

I run towards the game.

I run towards the things I know.

Natalie Serianni is a Seattle-based writer, teacher and mother of two. Her work has appeared in Seattle’s ParentMap Magazine, Ruminate Magazine, Sammiches and Psych Meds, and various blogs and literary journals. Her writing centers on grief, gratitude and motherhood.

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THE ALEKSANDER SCHOLARSHIP FUND

 

Guest Posts, aging

Wait, and Hurry Up

April 19, 2020
clock

By Susan Goldberg

The clock radio in my younger son’s bedroom is gaining time.

At first, it was a couple of minutes a day. I’d tuck him into bed at night and notice that the time was off, and sigh, and reset it, syncing it back to my iPhone. I assumed that a child had accidentally pressed the minute button, or that one of the cats had walked across the clock — originally purchased by me at the age of 14 from Consumers Distributing — pushing it ever so slightly into the future.

Except that it happened every night, every bedtime, until I finally clued in that the clock, after more than three decades of service, was dying.

“I think it’s time to replace this thing,” I told my son one evening. He protested. He liked the clock radio, perched like a loaf of bread on his dresser. He liked the way it made mornings come earlier. He thought it would be mean, not to mention environmentally unfriendly, to get rid of it over something as trivial as a few minutes each day, to throw it into landfill when we could just reset it each night.

I was inclined to agree. The frugality of his position, his make-do attitude, appealed to me. I, too, liked the clock. It reminded me of the 19-year-old cat we’d recently lost. She had held out for so long, years and years of the same routine: sleeping in her red chair in the corner of the living room, making her slow way up the stairs each winter afternoon to the same bedroom that housed the clock, basking on my son’s bed in the warm light of the southern exposure. She deteriorated so slowly that it was hard to really notice it: the way she weighed a little less, shed more fur, took a little longer to climb the stairs each time. Until a week before she died, when her decline sped up markedly: her eyes suddenly milky, her gait stiffer and wobbly. I found her, one evening, on the floor in my older son’s bedroom, tiny and gone. We wrapped her body in one of the boys’ old satin baby blankets and buried her underneath the rhododendron bush in the back garden, next to the previous dead cat, also wrapped in a satin baby blanket.

In the past week or so, though, the clock seems to have taken its cue from the cat, speeding ahead each day not in increments of a few minutes but dozens. It’s 2:08 PM as I write this; the clock’s display currently reads 3:21. After years of perfect health followed by incremental degeneration, it has suddenly upped the ante. The curve of its demise has turned sharply upward; has become visible, measurable, pretty much literal in its countdown to the inevitable end, when we unplug it and put it in the box with all the other e-waste.

These days, some days, I feel like that clock.

Like this: One morning this past summer, I sat down to journal and realized that the words were blurry on the page. I’d been journaling nearly every morning for more than 20 years, the same Hilroy 5-subject notebooks, the same Pentel RSVP fine-tipped ballpoint pens, and all of a sudden it was almost intolerable, the way the words fluttered subtly on their light-blue lines, the way the pen strokes seemed to bleed.

Or this: at the end of the same summer, I was besieged suddenly with waves of nausea, unexplained, unbidden. Almost daily, I’d close my eyes and breathe through the sensation, sour and shaky: the clammy skin and dizziness, the tightening of the ligaments in my neck. It felt like morning sickness, although there was no earthly way I could be pregnant.

Now, all of a sudden, I am the person with four pairs of reading glasses: bedroom, office, kitchen, purse. For more than 40 years, since I learned to make sense of print, I could easily read the words on a page, and then one day I couldn’t. And now, I have a prescription for Zantac, admonitions from my doctor to cut back on caffeine, alcohol, mint, onions, garlic, fatty foods. I’ve been diagnosed — after a series of highly invasive and unpleasant tests involving tubes and barium and fasting and suppositories — with reflux. The sphincter between my stomach and esophagus is weak, loose; stomach acid slips past it and up into my throat, burning it just a little bit each time.

“And that’s what’s making me nauseated?” I asked my doctor. It seemed incongruous.

She nodded. “The body,” she said, “doesn’t always have the best ways to tell us what’s going on.”

I thought of all those nights, countless nights, in the past few years, when I woke up, chest tight, feeling like I couldn’t catch my breath. The tightness was familiar: it was the same feeling I’d had since 11th grade math class, when I began doubling over in pain around exam time. “What are you worried about?” my doctor had asked me, not unkindly, when I went to see her with my teenage complaints. She diagnosed me with math stress and suggested Tums, trying to relax.

The reflux diagnosis — which came on the Friday before my 46th birthday — felt on the one hand like a relief: I was heartened to know that there was a physical, medical explanation for what was going on (and that the explanation was not, say, cancer), that it could be treated through medication and “lifestyle modifications.” On the other hand, I found it oddly unsettling, even a betrayal: for years, I thought — because my doctor had told me as much — that my gastrointestinal issues were all in my head, purely the result of anxiety. All those times I woke in the middle of the night feeling sick with what I assumed was worry, when I tried to soothe the burning in my chest with calming self-talk (or, in a pinch, Ativan or sleeping aids), I could’ve just taken a Zantac and waited 20 minutes.

It’s strange, to rewrite that kind of story about oneself. Yes, of course I was anxious: about math class, my mother’s cancer, my separation, every other stressful event in the intervening three decades. Yes, stress triggers reflux; the two aren’t entirely unrelated. But I had never thought to ask about, and no one had told me, that its manifestations had physical causes, that I could do something more than breathe through the nausea or up my meditation practice (and be stressed at my lack of initiative when I didn’t).

Most unsettling, though, was that sharp upward curve in symptoms. Arguably, I’ve had reflux since my mid-teens. And then, in August, my body — like the clock — upped the ante, hastened the decline, doubled me over with a queasiness I couldn’t identify and finally couldn’t ignore.

I can see, already, how the same story could, probably will, play out with menopause. Right now, it’s still, mercifully, on the horizon. Despite everything I’ve read in my Facebook perimenopause group, I have lulled myself into thinking that it will be a smooth transition, unnoticeable: cycles that will gradually shorten until they one day disappear, without drama, without fuss.

Logically, of course, my assumption makes no sense: a series of increasingly shorter spans between periods doesn’t lead to a gradual cessation but, rather, to one long, unbroken bloodbath. My friends’ testimonies bear this out, as does math. What I should prepare for is that sudden, dramatic onset of symptoms: headaches, chin hairs, weight gain, insomnia, hot flashes. It’s not like I haven’t been warned. I was born with a finite number of eggs, and, one day, the last one will be released and then, suddenly, there will be no more. (Each month, I am half-amused and half-irritated at my ovaries’ persistent hope that this time might just be the time. “What exactly about my life,” I ask them, “makes you think that what I really need right now is one more baby?”) And yet I persist in imagining that I can get it “right,” that with regular exercise and (even) less coffee and alcohol, and some well-chosen supplements, I might be able to avoid all of that, to continue along my straight and narrow path toward menopause rather than slamming into that sharp, sudden curve of night sweats, broken sleep, the 10 pounds (more?) that will appear over the course of four months, no matter how many carbs I don’t consume.

It will feel sudden, but it won’t be. Just as, although I persist in thinking of the nausea as coming out of nowhere, really it’s the culmination of decades of acid, the slow weakening of muscles, associated nerves finally frayed that nanometre too much. Ditto, I imagine, with my vision: it’s more dramatic to think of my need for reading glasses as sudden, but isn’t it really the culmination of years of gradual decline? Aren’t we all dying from the moment we’re born? What’s that saying? Even a broken clock radio is right twice a day.

Can we really prepare for the passage of time? More specifically, can we really prepare for the number it does on our bodies? More and more, I’m inclined to think that I’m asking the wrong questions. You don’t really prepare for decline. You confront it, the way you confront grief, in stages: At first you deny its possibility, and then you ignore its symptoms, and then you rail against it, compensate subtly for it, think you can overcome it. Finally, with more or less grace, you get used to it, incorporate it into your daily life. The curve flattens out, becomes the new straight line. Until you’re hit with the next curveball.

I think of my friend J, whose own stomach upsets were, in fact, cancer. Ovarian. I’ve watched her move through precisely that cycle: ignoring or putting up with the symptoms until she had to drive herself to the hospital, puking in the parking lot from the pain. Her initial impulse to “get cancer right”; to arm herself with information, make the best decisions, to leverage every ounce of privilege and training and gumption she possessed (and she possesses all those things, in spades) to be the best cancer patient ever, to elude (or at least best manage) side effects, to stay in control of this whole thing. As a friend and fellow perfectionist, I have watched how cancer, how the system itself, has steadily countered these impulses. Ovarian cancer, her doctors told her, is now considered a chronic disease, one more damn thing to incorporate into daily life. I think of my own mother, diagnosed at 37, dead at 59, the decades in between and how she, how we all, learned to incorporate the disease and its possibility into each day. What she taught us, what I see in J, was how to live in a state of grace, gritty and hard-won though it may be.

If you’re lucky — and I think I’m lucky, so far, knock wood — you notice the grace within the grit. In the midst of your various declines, you begin to notice some sharp trends toward the better: how the friends you have now are the best friends you have ever had. How you are so much happier living single in your own house than you ever were married in it. How wonderfully sharp the reading glasses render the words on the page, your reflection in the mirror — now you can see every chin hair in high definition!

Your focus sharpens in other ways: now, all of a sudden, you no longer have any patience for the friendships that drain your energy, and give them up, revel quietly in the space their absence creates, the increased calm. How you stop beginning your sentences with the phrase I think or I might, and start saying I want or I am. Or I did — because you’ve stopped asking permission in advance. You have enough money: to buy a new clock radio for your son, for plane tickets when you really don’t want to drive, for new lingerie (not the utilitarian stuff) when perimenopause makes you spill out of the old bras.

You unplug the clock from its outlet and can’t quite help running your hand over its 1980s-brown plastic casing. You were so young when you bought it. You feel a bit silly, laying it down gently rather than tossing it into the box with all the other digital and electronic detritus: the immersion blender your former mother-in-law gave you one Christmas, an ancient cell phone with a cracked screen. You think of every milestone the clock witnessed, the way it kept the time, held the space, even and unruffled, all those years. If you had one handy, you might have wrapped the clock in a satin baby blanket. You think, but don’t quite say out loud, the words Thank you.

Susan Goldberg’s writing has appeared in the New York Times, Ms., Catapult, Full Grown People, Toronto Life, Stealing Time, TueNight, Today’s Parent, and a variety of anthologies and websites, as well as on CBC, to which she is a regular contributor. She is the coeditor of the anthology And Baby Makes More: Known Donors, Queer Parents, and Our Unexpected Families. She lives in Thunder Bay, Ontario.

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Guest Posts, No Bullshit Motherhood

One Morning With Amy

December 8, 2019
shouts

By Susan McGee Bailey

For years, mornings with my daughter, Amy, began with shouting.

“Don’t you dare come in here, Mom!”

“Mom, I need you!”

“Mother! Where are you?”

Most mornings a familiar uneasiness in my stomach had already pulled me awake. My body learned long ago to hear Amy’s cries before any sound registered consciously. Since her birth more than forty years ago, she has survived complicated surgeries, spent endless months in rehab centers, and endured painful therapies. Her father and I made different choices when she was young. We divorced. I made a life with Amy on my own. I long for answers, for solutions to the difficulties my child confronts. But as is the case for most people with developmental and physical challenges, there is no single diagnosis. There is no silver bullet that can address all my daughter’s medical, emotional, and intellectual needs.

Years ago Amy moved from home to a more independent living situation in a group house, then home again when the anxiety of rotating staff became too overwhelming. We tried other group situations with similar results. Now she lives in a shared living situation with a young couple. Together we celebrate each new aspect of her independence: carrying her own house key, presenting her CVS gift card to the clerk, laying out her clothes for the next day. But I still jump up in the dark, half out of bed before remembering the sounds that awakened me are no more than the rustle of a birch branch or a breeze stirring the porch rocker. Some nights I fall back on the mattress and sleep. Other nights, I’ve fallen too far awake. Amy is not here. The house is empty and silent. A passing car breaks the stillness, a dog barks in response—daytime sounds out of place in the lonely night. I rock on the porch, hug my knees, and try to banish images of Amy calling for me.

One memorable weekday morning when Amy was in her late twenties, her voice was unusually loud. “Mother, I need help! Now! Right now!”

“I … am… coming…Amy.   I…am…here!” I hoped my voice was both audible and calm. Without her hearing aids, Amy hears only loud voices, words spoken a beat slower than normal.

Amy’s bowel problems, the ones that first developed when she was fifteen, had been worsening for several years. The many surgeries designed to help, instead weakened the muscles in her rectum. Controlling her bowels required constant vigilance to avoid daytime accidents. This success consumed her energy, increased her severe constipation, and worsened the nighttime situation. Four or five mornings a week she woke up with her body, her bed, often her walls, a smelly, smeared mess.

That morning I was glad it was winter. Every window was shut. Her agonized sobs, angry words, and slamming of doors would not disturb the neighbors. I would open the windows in her room and the bathroom before we left for her day program, never mind what it would do to the heating bill. The new deodorizer I’d paid twenty dollars for barely made a dent in the stench.

Once Amy was showered, shampooed, dressed, medications taken, bedroom and bathroom clean, her bedding in the washing machine, it often required the bribe of a store breakfast to get her out the door. By the time we’d reached the car that morning I was exhausted and close to tears. How would I make it through the workday?

The meeting of the project directors’ group at the feminist research center I directed hovered uneasily in my head. I needed time to think, to go over my planned remarks, but at this rate everyone would be assembled and waiting before I arrived. They would understand. Many had children. Those who didn’t were equally committed to a work environment that provided space for children, for families, for emergencies. Still, I didn’t want to take advantage of my position. The mornings when things went smoothly with Amy were fewer and fewer. She was not improving. New rounds of medical appointments would need to be scheduled.

I took a deep breath and started the car, trying to focus on the moment, not my meeting or Amy’s medical problems. “Where should we go for breakfast this morning, Amy?”

“I don’t care, I hate you! You are an ugly, stinky mother! I hate stinky!”

“It’s okay, Amy. What about Vidalia’s?”

“No, I say the Coffee Mug!”

The Coffee Mug was actually named The Clever Monk, but Amy’s hearing loss makes fine distinctions difficult. She often misunderstands words she does not know or has not heard before. She has always insisted the little shop was The Coffee Mug. When a couple of attempts to correct her resulted in angry shouts of “No, you are not right! I am right!” I surrendered to her certainty.

Two men on a ladder were putting up a new sign with the name “The Clever Monk” in large gold letters as we arrived. Amy was distracted from her anger, her blueberry eyes intent on this new activity. She rarely failed to embrace the excitement of the unexpected.

“Mother, look. They don’t know how to spell Coffee Mug! It should be C-O-F- E-E space M-U-G, right? They have C-L-E-V-E-R space M-O-N-K! That is silly! Can I tell them?”

My hopelessness faded. I was struck by her self-confidence, her persistence. Her designation was a more accurate description. Should I try to explain again that her version of the name was wrong? Should I use this opportunity to correct her spelling of coffee? I did neither. She was happy and had regained a sense of control, why spoil it?

“Amy, let’s just get some breakfast. You don’t like me to correct you….”

“Okay, Mom, I love you so much!”

She ran into the shop, her bad leg trailing a bit, her blond hair all higgily-piggily and still uncombed—my energy had failed at that final morning step. Her smile was broad, confident. “Besides, Mom, the sign looks really good anyway!”

“Yes, it does, Amy.” My smile was almost as wide as hers.

We lingered, ordered juice, coffee, warm, sweet muffins. We watched the painters. Amy’s day program and my office could wait.

Moments of joy must not be wasted. They are luxuries to be savored.

Susan McGee Bailey is a writer and a feminist. She directed the Wellesley College Centers for Women for 25 years before retiring to spend more time with her daughter and study creative nonfiction at Grub Street in Boston. Her non fiction has appeared in MS Magazine, The Boston Globe, and Gulf Stream. She is working on a memoir, “The Education of a Feminist.”

 

Upcoming events with Jen

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THE ALEKSANDER SCHOLARSHIP FUND

Anxiety, Guest Posts

I’m A Meditation Teacher, And I Live With Anxiety

April 20, 2019
anxiety

By Megan Winkler

When you stand up in the front of a class or – in my case – sit at the front of a class, you’re the expert in the room. The pressure to be perfect is almost permeable for teachers. The same is true for meditation teachers, even though our job should be totally relaxing. There’s a lot of responsibility to the experience.

We are charged with creating a safe environment for complete strangers to take a few steps on the path of their personal transformation journey. We have to deliver our guided scripts in a calm, soothing manner. And we have to be prepared for just about anything: tears, snoring students who fall asleep, the kickboxing gym right next door suddenly starting up their class, stern and doubtful questions from participants, or the guy who got dragged to class by his girlfriend who rolls his eyes more than a sitcom teenager. (I’ve had ALL of these things happen in my classes.)

It doesn’t matter how many times you’ve meditated yourself, by yourself. When you sit in front of a class – or even post a video online – there’s a ton of pressure to be flawless, perfect, and utterly expert in everything.

But here’s the catch: I’m not perfect. In fact, although I teach people how to overcome their fears and conquer anxiety, I’m continually battling it myself. Continue Reading…

exercise, Guest Posts, Health

Getting Up Offa That Thing

March 11, 2019
trainer

By Nina Gaby

Before we start, the trainer asks me if I can get up and down off the floor. We are standing in front of a contraption known as PF360. As I am devoted to the idea of changing my life right now and keeping the dark shadows of my mood on the periphery, I force a good-natured laugh. “Now why are you asking me that? Do I look like someone who can’t get off the floor?”

Well yes I probably do. My white hair flies out from its clip, my left arm trembles a bit from the exertion of the Matrix machine that I’ve just done again for the first time in a year, and my numb right hand can be pretty worthless as evidenced by having just dropped my iPhone again. I’m pale from insomnia and worry and disappointment. And then there’s the belly, an appendage with a life of its own. I’ve already been called “hon” and “dear” by staff twice today. No one ever called me “hon” or “dear” until I hit sixty-five and now I rue every condescending sweetness I ever bestowed on any old person in my life. It’s a micro-aggression, I want to tell them, but off course I don’t. At least they are trying to sprinkle a little kindness in an inhospitable world.

Dexterity and stamina suspect, I surprise the trainer by holding plank for 45 seconds and being able to synchronize “dead bug” and move on to the ropes and pulleys without incident. “I do yoga” I tell her. “Not well,” I add. “I used to exercise all the time…” I trail off. She is glancing out over the football field sized Planet Fitness and worries that if anyone else shows up for the training she won’t make it out in time to pick up her kids from day care. She is a working mom who doesn’t have time for my reminiscing. We move on to the kettle bells. Continue Reading…

Guest Posts, Child Birth, No Bullshit Motherhood, Pregnancy

Delivery

July 9, 2017
delivery

By Amanda Parrish Morgan

I discovered babycenter.com shortly after I found out I was pregnant with my daughter. Babycenter consists of watered-down medical advice, product-placement-heavy blog posts, weekly produce-comparison updates about the size of a growing fetus (“your baby is the size of a butternut squash!”), and message boards. These message boards are like the comments section of a clickbait article: full of deliberately provocative personal attacks, unsolicited advice, and rampant misuse of your and you’re. Also like the comments section, engaging with the message board posters had the effect of making me feel like I’d been part of something unhealthy and malicious.

I noticed that the vast majority of Babycenter posts appear between midnight and dawn. The anonymity of the message boards invites confessional postings: women admit pornography addictions, cigarettes they’ve sneaked despite being aware of the well-documented dangers of smoking during pregnancy, suspicions of spousal infidelity, spending binges using a borrowed credit card. None of these particular transgressions speak to my own strain of pregnancy guilt and fear, but guilt and fear themselves were the defining emotions of my pregnancy. Perhaps this is what makes this collection of strangers, awake and typing away online across the country, so appealing.

***

At the beginning of my third trimester, I somewhat grudgingly, but dutifully, reported for my glucose screening test. I chose a midwife group for my obstetric care, and was surprised when, just as she’d finished complimenting my un-swollen ankles, continued running routine, and fundal height, my midwife presented the screening as routine and mandatory. I knew the screening resulted in a lot of false positives. I’d read that even for legitimate positives, the treatment was exercise and a balanced diet, which I felt proud–desperately so–that I’d maintained throughout my pregnancy. On one website, I found a list of criteria that might exempt a woman from the screening. The only one of these I did not meet was being younger than 25. I felt skeptical, annoyed, haughty. Though, ultimately, it was my intense desire to be a good patient (how much had I internally gloated after being told my belly was perfect?) that kept me from asking about the procedure to waive the screening.

She said nothing.

“What are the alternatives?”

That night, although it was already late by the time I got home from the meet, my husband Nick and I went out to dinner so he could eat a normal meal and I could order something with no carbs. But, not until after I squeezed in a short run around our neighborhood. I was tired, and had thought I might skip running any more than what I already had on the course during the meet, but in my Gestational Diabetes-googling mania, I’d read that exercise helps metabolise glucose. I was worried if I didn’t run more, I would fail the three hour test in the morning. That I was more concerned about passing the test than actually seeing results representative of my typical diet and lifestyle didn’t then strike me as irresponsible or self-centered. I didn’t exactly logically feel that I’d done something wrong in failing the screening, but I certainly didn’t feel I’d earned the right to start exercising less.

I couldn’t sleep that night, and the next morning I was waiting at Quest Diagnostics when they opened at six, already hungry.

This is when I made my first Birth Club post: sitting at Quest Diagnostics five minutes into my three-hour glucose screening test, defensive, worried (but unwilling to admit that I was worried), surrounded by pharmaceutical pamphlets.

Several people responded with tales of twelve pound babies spending weeks in the NICU due to undiagnosed GD, others responded with anecdotes of vegan yogis with GD. One woman accused me of fat-shaming. In the second before I got control of my consciousness, I thought, “yes, of course.” I’d like to think that the only person I felt deserved shame was myself, but I’m afraid that’s giving myself too much credit.

I’d brought a book to read during the test, but after I had the drink, this one twice as sweet as the one from the one-hour screening test, I couldn’t focus. My heart was racing and my mouth was dry. Were these signs I was going to fail the test? Between blood draws, as I grew increasingly exhausted, I obsessively googled. Who gets gestational diabetes? Gestational diabetes causes. Gestational diabetes treatment. Gestational diabetes outlook. Gestational diabetes complications.

Later, with the security of having passed the second test, I’d been able to admit to myself that there might be some relationship between my feelings about the gestational diabetes screening and years of insecurity about the intersection of weight, self control, and worth. I explained to Nick that when I’d gotten pregnant, for the first time I could remember, I hadn’t dreaded going to the doctor, getting on the scale, or getting my blood pressure taken. I liked the drive to the office, giving me distance from teaching and grading and coaching to enter into the mental space of expectant motherhood. I liked the appointments themselves, meeting all the midwives, hearing the baby’s heartbeat, and then leaving buoyed by reassurance from the checkup. I was sad, I said, that this once-positive medical experience had begun to feel like every visit to my pediatrician, every team weigh-in at in college, every look (real or imagined) from skinnier girls on the starting line of races.

The closer my due date drew, the more I read. I was–for fear of going to the hospital with a pile of ninth grade essays–totally caught up on grading, the days were short and cold. The mobile hung over the crib, clothes washed, sorted, and stored. I couldn’t think of anything to do but wait. For the most part, I was too anxious and distracted to read or write much. The notable exception were labor stories. I read blog posts detailing the labor experiences of professional runners. I read Labor Days, an essay collection of women writers’ birth stories. I spent more and more time on Babycenter’s December 2014 Birth Announcement thread.

I might have been able to tell myself I was looking for camaraderie, a way to feel less alone or confused or scared had any of the interactions I witnessed through the message board been supportive. Instead of downplaying anxieties and offering reassurances, women posted stories of prenatal cancer diagnoses, sudden infant death syndrome, horrible birth accidents, tales of spousal abandonment, emergency hysterectomies performed before the fog of general anesthesia had even worn off. The spectres of loss and death–mine or my daughter’s–that felt increasingly menacing as I tried to heed advice to focus on the positive. I couldn’t verbalize these fears precisely. I guarded vigilantly against negative thoughts which meant I couldn’t even bring myself to confront them.

But before this–before I’d given birth, before I’d become a mother, the most concrete and tangible way that my life was changing seemed to be that long-distance running, my primary social activity and vehicle for self worth was off limits. The end of years of keeping bodily shame at bay through distance running, was the loss I feared. Mostly, of course, the notion of control over my body was an illusion, but it was an important illusion that had defined decades of my life.

I wish what I felt viscerally that I needed had been as simple as a cheeseburger. What I craved instead was connection. Not like “I’d like to spend the evening with some friends,” but deep, insatiable yearning for a connection both to the person I’d spent thirty-two years understanding myself to be and to a much bigger and even abstract community of mothers.

Before I got pregnant, I thought of myself as someone who needed a lot of alone time. When I was about five months pregnant, Nick was gone for a week at a conference, and instead of enjoying the opportunity to watch independent movies while eating all the pregnancy-safe-sushi a person could ever want, I grew lonely, and moved to fill my evenings with plans. I went to my parents’ house for dinner, caught up with friends from work. But, all the while. I couldn’t shake this feeling that I was still lonely. That the real me was watching a different me go through these motions.

I once heard depression described as a floating sensation. In Marjane Satrapi’s graphic autobiography Persepolis, she depicts herself as a teenage Iranian refugee floating with terrifying rather than joyful weightlessness in an almost entirely black sky.

The first time that the sensation of loneliness got strong enough to knock me over, I sat on the bottom step of our staircase, crying inconsolably, imagining myself as a hybrid of Sandra Bullock’s character in Gravity, space shuttle untethered and tumbling hundreds of miles a second in some unknowable direction, and the image of young Marji, lost without a place that feels like home (and how absurd, I realized even as I imagined it–I was not woman fighting for oxygen in outer space, nor a refugee in the Iranian Revolution, but a lucky, healthy, American woman with a good job, a kind husband, a supportive and loving family, expecting her first baby after few months of waiting for a positive pregnancy test). Over and over again, I kept telling Nick, “I’m so lonely,” to which he kept responding, hurt, confused, “But, I’m right here.”

Even before I met my husband, I wanted to be a mother. I had an uncomplicated vision of what this relationship meant in the same way, I had wanted to be a teacher, a wife, a friend. I thought that I’d share my passion for literature with a classroom of undistracted and eager students, or that marriage would be cozy Sunday afternoons with chili on the stove, that my childhood friends and I would remain close for life. That none of these relationships were as simple as what I’d once imagined didn’t make me any more prepared for the disconnect I’d feel during pregnancy. I still could not envision motherhood or pregnancy as nuanced in the way I’d come to understand these other relationships. What kind of person would I be to admit fear and loneliness, sometimes building on one another until I’m floating, untethered in the middle of the night? What did my preoccupation with fear and my feelings of shame mean? That I would be a bad mother?

***

In movies, pregnant women are often shown crying at commercials about puppies. Hormones! Ha! I both did and did not want to blame hormones. I wanted to be able to explain to Nick that he really had done nothing wrong, and that in the light of most days, I could see how irrational my panicked, lonely tears really were. But, the emotions were as real to me as any others I’d experienced, and so, it seemed unfair to dismiss them as a side effect of pregnancy hormones.

I’ve tried to think of all the rational reasons I might have felt so lonely while pregnant. I do not have many friends, at least not friends from before motherhood, with kids. Although Nick and I were going to become parents together, I was the one who was pregnant. With daylight savings, the nights came early and those exhausted hours between the end of the work day and bed felt bleak.

There was some voice in my brain telling me that I should not feel so alone. That pregnancy connected me, not only to my own mother, but to women everywhere, and for generations before and to come, who have carried and borne children. All these women on babycenter.com, even the ones who named their children something I found tacky or who posted pictures of baby shower cakes with a doll’s head crowing from a frosting vagina, had something fundamental in common with me.

***

The last time during pregnancy that I cried, I cried about fear of labor. Much of what I tried to explain was the same feeling of alone-ness, of being alienated from myself, that I’d tried to explain on past nights. On a logical level, all I could explain was that I was worried about complications. Somewhere, floating far from my space craft, I mumbled aloud that I was scared I might die.

That fall, one or both of my parents began attending my team’s cross country meets. At first, I thought they were just really getting into the team’s success. Then, somewhere around the third week in a row when my dad made a ninety minute drive one-way to watch my girls race across a field in Manchester, CT, I realized that they were worried something might happen to me. Not necessarily that I might die, but that I might go into labor while far from the hospital where I planned to deliver, far from my husband and his car with its infant car seat carefully installed, that it might take longer than it needed to, or be more uncomfortable than it could have been for me, their daughter, to have her daughter.

I grew up with the unquestioned understanding that it’s bad luck to even mention early symptoms of a cold outloud, and that denial is a powerful tool of self-preservation. I feel immense guilt that I allowed myself to vocalize my fear of dying. And even now, pregnant with my son, that I might have courted disaster by articulating the unspeakable fears of my first pregnancy. I’d like to think that I meant “dying” metaphorically. That I was afraid the self I’d always been would be replaced by a new, unfamiliar self, and that the process would be one of death and rebirth rather than of transformation. I was reading a lot of Joseph Campbell then, so that may have been a part of it. But, I’d also been reading all those labor stories, many of them natural childbirth testimonials (meant to be empowering, but often quite the opposite), and that fear I articulated was at least on some level literal. Childish, wimpy, selfish… everything other than what I believe myself, or an ideal mother to be.

***

Some of the posts are marked “*trigger,*” the warning women use to label threads about seriously ill babies or domestic violence, and it was here, not in the news that I first learned this term. One of the most common pieces of advice I received while pregnant was to shield myself from negative thoughts. That I should avoid the sensationalist, violent news coverage, cut out obligations that drained me, sever ties with the kind of friends who would judge me if my house was dirty in the months after my baby was born. I took this advice seriously.

But what about darkness–triggers–that are of my own making, sprung from within? I like to think of myself as positive, kind, hopeful, optimistic, energetic. It wasn’t just the life I’d always known, or the friends I’ve always had that I feared I might be floating away from on those rough nights (though of course I was), but that in facing the darkest parts of myself, I feel I’d found something in myself that was meant to remain locked away and banished. Maybe I was lonely from myself because I’d come face to face with a part of myself I never wanted to acknowledge existed, a part of myself I don’t want Nick or any of the people he so gently suggested I reach out to to know about.

“Maybe you should call Laura,” Nick suggested an hour into my sobbing. I was curled embarrassedly into the corner of our brand new couch (I picked it out imagining our little family of three snuggling here). And, because I was worried that all these lonely nights were taking a toll on Nick before the sleepless nights of the baby even began, I did.

Laura and I got lunch, but there was only so much I could say. We sat at Panera, where I picked at a slimy turkey sandwich (many women on babycenter.com don’t eat cold cuts during pregnancy; I ate any protein I could stomach, but always felt guilty to be seen eating turkey in public). Laura is a woman who’s opened up to me about her own postpartum depression. We’ve been friends since before she got divorced from her first husband, before she got remarried. She introduced me to Nick. But, when she asked how I was feeling, although I managed to tell her that I’d been having some hard nights, I couldn’t help myself: I steered our conversation away from the places my mind goes untethered, and we talked about work, about running, about our sandwiches.

I’ve heard some women say that labor is less frightening the second time around because they know what to expect. But, I felt so keenly aware of death’s proximity during labor, which is something I had tried to stop myself from realizing beforehand–and I know that now. I was a healthy, thirty-two year old woman with no history of complications or serious medical issues. But perhaps it was something I had considered. Or, if not considered, known. Perhaps that’s what I was looking for–an acknowledgement of this dark side, a validation of the fear I felt, not just of labor’s pain and unpredictability but, for all of medicine’s advances, the extent to which the life of my child, even from the very beginning would depend on me. And not in the passive way of pregnancy, but on my work–my labor. Instead, I read the confessions of women hundreds of miles away, I kept track of my weekly running mileage, tried to find new ways to wear the few pieces of clothing that still fit and I said that I missed being able to put myself in pain.

Next week, when I’ll be 28 weeks pregnant with my son, I’ll go for the one-hour gestational diabetes screening. I haven’t had any cravings this pregnancy, either, and I’ve still been running. Is it different this time?  I haven’t been on Babycenter much–just every few weeks to check in on the physiological changes my baby and I are experiencing. Motherhood has undeniably separated me from decade-long friendships, and at the same time precluded forming new friendships of the intensity I once took for granted. In the mom’s group or at preschool drop-off, women ask my due date, how I’m feeling, if I know the baby’s gender. Sometimes we even talk about why our toddlers are crying, but in these stolen moments of adult conversation between women who are not exactly friends but part of the community of mothers, we don’t talk about shame or guilt or fear or where the word delivery really comes from.

 

Amanda Parrish Morgan taught high school English in Connecticut for seven years. Currently, she is raising her young daughter, coaching the local cross country and track teams, and working on a collection of essays. Her short story “Teratoma” was named a finalist in Glimmer Train’s Short Story Contest for New Writers. Her essays have also appeared in N+1 and The Rumpus and The Millions.

 

Join The Manifestation Retreat: Manifesting Under The Tuscan Sun. Sep 30-October 7, 2017.. Email retreats@jenniferpastiloff.com or click the picture above.

 

Join Jen Pastiloff at her signature workshop in Atlanta at Form Yoga on Aug 26 by clicking the picture.

 

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