I miss my boobs. I miss them so fucking much.

“Well at least it’s not like an arm or leg” some say.

Fuck off.

Okay, I’ve never replied, “Fuck off.”

I have muttered “yeah” as I mentally added them to the list of people I irrationally expected to know how to correctly behave in a very wrong situation. It’s wrong to have a part of you removed when you don’t want it removed. It doesn’t matter if it’s outside your shirt, inside your shirt, or inside your body. I’m the one losing it, both physically and mentally. Playing the it-could-be-worse game has no winners. I don’t need a spectator turning my grief into a compassion competition. Just repeat back to me what I say, like “Yes, this does suck” or “Yes, this is hard” or “Yes, I miss your boobs too.” Be my hype man.

“Be grateful you’re alive,” some say.

Again, fuck off. You know what I’m grateful for? When this person stops talking to me. Of course I’m grateful I didn’t die, but I also feel ungrateful that I got breast cancer. Yes, yes, of course cancer helped me gain a new perspective and learn some incredible life lessons, but I also gained a new perspective and learned some incredible life lessons when I tripped on shrooms and talked to a bush I thought was my dad. I didn’t need cancer to evolve. I certainly don’t need someone to remind it’s cool that I’m not dead.

“Have you tried a plant-based diet,” some say.

The “some” in this scenario is actually just one person who had the audacity to suggest I go totally vegan after my diagnosis. Bitch, I already have cancer! Your lentil soup isn’t going to help me right now. Also, my parents have been eating $5.29 processed meat subs from Market Basket for years and have minimal health issues in their eighties. Just sayin’.

What I need, what I want, is my body back. A body that betrayed me after I consciously nourished it, moved it, and self-cared the hell out of it. A body that has been sliced open, divvied up, and rearranged like cuts of cattle. A body that was forced to age prematurely and shoved into early medical menopause because the cancer fed off my estrogen and progesterone—the same hormones that miraculously made my child. When the chemicals that create life try to kill you, reconciling irony becomes a new maddening breast cancer symptom.

I miss the way I used to watch TV cupping my breasts like a weighted blanket for my hands. Sometimes I cup my new breasts but it’s not the same. My new breasts are miraculous, made from own tissue. I’m grateful to have these breasts but still wish they were my original ones. Even more so, I wish I had my nipples. Holy shit do I miss my nipples. I even miss the hair around my nipples that I constantly complained about.

When I think about my original breasts and the nipples that I’d had since I was born, a visceral emptiness and longing overtakes every part of my system. I want to stomp and scream like when my daughter’s iPad ran out of battery in the middle of K-Pop Demon Hunters. A daughter who will now have to mark “breast cancer” as part of her family medical history. I never had to mark “breast cancer” in my medical history because I’m the first in my family to have it.

Like a lot of people, I struggle with guilt and shame. I was about to write “like most people raised Italian Catholic I struggle with guilt and shame” but then I remembered that guilt and shame are the few things that unite all cultures and religions. Questioning how cancer was my fault was unavoidable.

I spent the first two month of my diagnosis in the bargaining stage of grief, examining my past in an attempt to solve the case of “why me?” Mysteries are impossible to solve when you are the victim, perpetrator, and detective.

Was it something I did? Something I said? Something I ate? Something I didn’t eat? Oh, I know! It’s because last year in yoga class I told the teacher the woman in front was filming herself and it was making me and the woman next to me uncomfortable. The teacher said, “Oh, she’s making a fundraising video for a breast cancer retreat.” Had I known being against the obnoxious habit of putting people in your content without permission would give me cancer I would have been the best damn background actor TikTok would have ever seen.

Was it because I felt too sexy and I was punished with having my beautiful soft perfect tits taken away? A titty takeover, you could say. After wasting my adolescence hating my body, somewhere around my mid-thirties I finally began to feel more comfortable in my skin. I was eating intuitively. I was dressing for my body, not against it. I was flowing and existing and feeling good. Did I get too comfortable? Was I becoming too confident? Was I developing (gasp) self-esteem?

Was it because sometimes I felt jealous? Judgmental? Bitter? Was it because of that time I talked shit? Was it because I stopped writing in my gratitude journal? Was it because my dad paid for college? Was it because I was mad that so many good people seemed to have bad things happen and so many bad people seemed to have good things happen? Was it because I drank? Was it because I was too privileged? Was it because I didn’t breastfeed? Was it because I left that nail salon a mean Yelp review even though they refused to fix my nail two days after my gel manicure? Was it because when some people in my life experienced grief I did the whole “it-could-be-worse” game because back then I didn’t know how much it hurt?

Eventually I realized I didn’t do anything to get breast cancer and that guilt wasn’t going to alleviate my grief. Grief is an inevitable hazard of existence. People are going to get sick. People are going to die. Parts of our bodies are going to break. Hearts are going to break. Couples are going to break up. Pets are going to be put down. Plans will get messed up. Jobs will be lost. Dreams are going to be dashed. Businesses are going to close. Money spent. Ideas unrealized. Trust betrayed. Objects misplaced. Parties rained out. Houses burned down. Sense-of-self missing. Hope gone.

And then eventually you heal. You aren’t fixed. You don’t forget. But you do feel better.

I miss my boobs. I miss them so fucking much.

Share

Leave a comment

Giulia Rozzi is a writer, comedian, and producer based in Los Angeles. She has written for shows such as HBO Max's South Side and MTV's Girl Code and has been published in The New Yorker, Refinery29, Esquire and Huffington Post. Her TV appearances include Conan, Comedy Central, CBS's After Midnight and way too many of those Vh1 circa 2013 talking head shows. Giulia also had the honor of giving a TEDx talk on humor and healing and often works as a creative coach for solo performers, corporate speakers and other types of storytellers. For more, subscribe to Seven Bodies, her Substack about breast cancer reconstruction and mental health.

I was more twisted than a pretzel. My belly ached. The pain was worse than menstrual cramps. I had uterine fibroids and they were painful. My doctor asked, “What are your plans for your uterus?” She was encouraging a hysterectomy, but I was in my mid-forties, raising a preschooler alone—there was no time for surgery and no one to help.

To alleviate the cramping, I was referred to another doctor who suggested an IUD. Hopefully I could stand upright once it was implanted. It seemed like a win/win. We scheduled an appointment for the insertion.

The day arrived, instead of the doc performing the insertion, a relatively new nurse practitioner was on deck. She introduced herself with an easygoing smile. My stomach was falling into my platform heels. I had a bad feeling about this. But since I was there, I got undressed and into the stirrups. My first mistake.

Painful doesn’t come close to accurately describing the insertion. This foreign body was jabbing my uterus like daggers. Sitting and standing both hurt. I wondered how I would sleep. The nurse practitioner told me to take Tylenol for any pain and call the clinic if there were problems.

There were indeed problems. The first night’s pain was tolerable with the IUD. The fibroids were still doing their thing. With each passing day, the pain crept from a tolerable five to an intolerable seven. By day three my side hurt, and it was painful to walk. I had an active four-year-old who wanted Mommy time, and I had to maintain our single-parent household. I was picking up Barbies and books in extreme pain. It didn’t feel right; I didn’t feel right.

My seventy-something mother urged me to go to the clinic and tell them something was wrong. She was looking at flights to Seattle to check on me and the grandbaby. Ever cheerful (God only knew how I faked it), I’d be alright. After clicking “end” on the call, I felt my pain radiate. It wasn’t going away. I had shortness of breath, and my whole body hurt. I wasn’t Super Mommy; I was Hurt Brittany. And scared. Like my mother, friends encouraged me to call the clinic. I acquiesced. There was no other choice.

By day four the pain was intolerable. I ate Tylenol like candy so I could get into my car to drive. Why did I drive myself? Because all my friends were at work. I had no one else to call. The clinic thankfully was a short distance from my home, so the trip wasn’t too difficult. I sopped up my tears at each traffic signal. It hurt that much. I brought my daughter with me as I couldn’t get across town to take her to Montessori. I bribed her with candy, McDonald’s, and endless movies if she let me rest.

Walking into the clinic was painful; standing upright was a chore. My daughter dutifully stood at my side and opened the door for me. Her face said, “My Mommy is sick.” I checked in and waited to see someone, anyone other than that nurse practitioner.

My name was called, and I was brought back for an ultrasound. A new doc was in the room. I sensed she was more senior; she gave off that vibe. She was White; there were no Black doctors on staff. I preferred Black doctors, as I knew White doctors believed myths about our pain—such as our nerve endings being less sensitive than White people’s. The senior doc thought it was best to get a picture of what was going on. I nodded my head in agreement; we were getting somewhere.

Before I hobbled to the table, I made sure my daughter was set up with her doll to keep her busy. I had no choice but to bring her—my on-call nanny service didn’t have anyone to send over before my appointment. So I was stuck.

The doctor asked me a crucial question as I positioned myself on the table: “On a scale of 1-10, how much pain are you in?”

I told her nine. It was hard to walk, talk, sit, or sleep.

Her response felled me: “Did you drive here?”

Confused, I said, “Yes.”

Then the appointment fell apart.

“If you could drive, you’d be at a five.”

I shook my head vigorously. No; that was definitely wrong. I recounted how much pain I was in. Nothing could sway her. I gulped. I was stuck. They didn’t believe me. Willing myself not to cry, I let them put the cold gel on my abdomen. The wand slipped over my belly. The pictures didn’t show anything abnormal with the IUD or my fibroids. But to be safe, I was getting sent over to the hospital for more imaging.

I asked what to do for the pain.

“Tylenol,” the doc said. I mentally gave her the finger. I gathered myself and my child and got out of there as quickly as I could.

Sitting in the car, the pain worsened, but I made it home in about fifteen minutes. Once home I emailed my manager and told her I was out for the week. There was no way I could manage work.

After my call, I took three Tylenol. They did nothing.

***

The next day, I was in worse pain. Tylenol was ruining my liver with how many I was gulping down. In retrospect, I should have taken a cab, but I didn’t think of it. I willed myself to drive on my own. Somehow, I got my daughter to Montessori. The pain was so severe I had to sit in the office before walking her into her classroom. The staff asked if I was alright. I shooed them away. I made my way back to the car before heading to the hospital.

Pain was an old friend; I breathed through probably the worst of it and kept going. Checking in was mercifully quick; I sat in the nearest chair. As soon as I did, the tech called my name. I tried to stand, but I ended up bent over. I couldn’t walk anymore. I took slow steps toward her.

“What’s wrong with you?” she asked.

With a well-deserved attitude, I said, “I’m in pain.”

“Oh.”

She walked at a brisk pace. It was clear from the clinic to the hospital that no one gave one shit about my care.

Cold gel was squirted on my abdomen. The wand slid over my body trying to locate the source of the pain. Nothing was conclusive; the tech saw nothing that could be contributing to my pain. She said the film would be sent to the doctor today.

Retracing my bent-over steps, I went home with a sticky belly and no cure.

I took a few Tylenol before driving home. It didn’t help.

A few hours later, the new doctor from the clinic called me. She confirmed there was nothing on the film to indicate where the pain was coming from. Her suggestion was to take out the IUD. I had asked about that earlier, but I was shushed by the first doctor I saw (she was protecting the nurse practitioner).

Now they wanted me to come back for removal tomorrow. Before I could say yes, the new doctor told me the nurse practitioner would perform the procedure.

I found my voice and roughly said, “No. That woman will never touch me again.” There was a pause, and the doctor agreed to do the procedure.

I won.

The IUD came out faster than it went in. Within minutes I was back on my feet with a prescription for Toradol sent to my nearby pharmacy. I was told how and when to take the pain medication, and I left.

The weeklong nightmare was over. I was free from that clinic. Never going back there again.

***

A few weeks later, I met a nurse at a party and relayed my horror story. She gasped at the ineffective care. She asked a smart question: Why hadn’t I gone to the ER? It never occurred to me. Something inside me must have believed my pain truly was a five instead of a nine. Or perhaps I was afraid of the same or similar treatment by the ER docs. My pain didn’t feel like an emergency (it was).

This experience stayed with me. I feared getting gynecological care. Now It’s years later. I have to see a new gynecologist for something I’ve ignored. I’ve cancelled not once but twice. I’ve pushed this out as far as I can. I may not make the appointment in March. But it’s necessary; I’ve ignored my body for far too long, and it’s taken its toll.

The only provider available is White and male. I expect very little. I’ve asked my daughter, now 18, to go with me.

She said, “Sure, Mama,” and clasped my hand tightly.

We got this.

Share

Leave a comment

Brittany V. Miles writes fiction and creative nonfiction exploring motherhood, mental illness, and generational silence within Black families. Her essay “Feral” (MUTHA Magazine) was nominated for the Pushcart Prize, and her fiction has been shortlisted for The Letter Review Prize. Her writing has appeared in Newsweek, Business Insider, and The Seattle Times and Open Secrets, with forthcoming work in Five Minutes, Tir Literary Magazine, and Minding Our Business: A Blacklandia Anthology on Mental Health and Healing. You can find her writing at morethanguardians.com

The first time I had a migraine with aura, I was 24. It came on suddenly, just a few days after I met John, a 55-year-old strip club patron who tipped me $400 and invited me out to a compensated dinner. At that time, nobody knew I was a dancer except my family, and nobody else knew I had agreed to meet him at a steakhouse in downtown Denver either. That chance meeting was the seed of a secret that would bloom into an entire double life: three years of working as John’s sugar baby, and the start of a chronic condition that would far outlast the secret world we built together.

At first, I thought the aura was something magical. Sparkling lights spun across my vision in kaleidoscopic pastels—pale yellow, baby blue, and soft pink—as if the universe were trying to communicate with me. They came out of nowhere, hovered in my right line of vision for twenty minutes, and followed me even when I closed my eyes. “What are you trying to say?” I whispered into the dark. The transition from being flat broke to meeting John and getting paid for “my company” had felt so improbable, so fated, that I let myself believe I was one of God’s favorites. Why shouldn’t this aura also be a message? But then the lights dissolved into a sharp, crushing pain, and I let go of the idea that anything about it was magical. I only hoped I wasn’t dying.

Meeting John, on the other hand, really was something magical. I was an undeniably unskilled dancer, but the club paid better than any job I’d ever had—better than sandwich shops, the kitchen at a physical rehab facility, even bagging at an upscale place like Whole Foods. And then, for a glorious few months, I made even more money having weekly dinners with John, no strings attached. No kissing, no touching. Just dinner. Eventually, though, he would proposition me for sex at the rate of $1,200 a week. It felt simultaneously like the most morally fraught decision I could make and like I’d won the lottery. I said yes, and for three years lived in two extremes: the most financially secure and free I had ever been, and the most ashamed and terrified of being found out.

The very first dinner had been nerve-racking. My mind spun with every possible danger: Would he follow me to my car? Force sex if I said no? Had I just opened the door to a stalker? And even worse: What if someone I knew saw me? While I would eventually grow comfortable with John, who was always kind and gentle, that last question never left me: What would people think if they knew?

When people ask now why I wasn’t open about sex work—aren’t people “super cool” with it these days?—I think back to the first time I danced at 19. Believing I had a progressive social circle, I’d been open about the job. I told my friends what it felt like to undress onstage. I told the woman I was dating how I hated giving lap dances, even though that’s where the money was. The reaction was swift and brutal: I was dumped, slut-shamed, and treated like shit.

I should’ve known better. That’s how it felt at the time. It was 2011, and strippers were still the butt of endless shitty jokes. When I give university lectures on sex work now, I often play a clip from Family Guy in which Quagmire takes his friend’s teenage son, Chris, to a strip club. A dancer asks Chris how old he is, and he shoots back, “Old enough to know you’re a whore.”

The satire is obvious, but not all of Family Guy’s young audience was in on the joke. Many absorbed the message at face value: Strippers were terrible, morally bankrupt people who sold their bodies because something fundamental was missing, like, as the punchline suggested, a brain. Looking back now, I sometimes regret the secrecy I kept in my twenties. But back then, I simply couldn’t face the weight of judgment, not on top of the other risks I was already carrying.

But as my stress and guilt mounted—lying to friends, dodging questions, splitting myself in two—I began to feel dishonest in a way that seemed to rot me from the inside out. My self-esteem collapsed. Right alongside it, the migraines escalated. I recognized the correlation almost immediately. Still, I told myself it was worth it. The arrangement was temporary, after all. I had a plan: sugar until I paid off my student loans, got my dental work done, and saved $10,000, a sum I naively believed could stretch across an entire lifetime post-John. I was so poor then that ten grand seemed like a permanent safety net. Now, of course, I know better. In the last few years alone, I’ve had dental bills that toppled past that number. (I wish I were being dramatic.)

I figured that the migraines would subside when the arrangement was over, but when that time came in 2018 and I walked away from John and the most financial security I’d ever had, the migraines persisted.

“Well, they’ll probably stop when I come clean about sugaring,” I told myself. I was no longer actively lying, but I still carried this immense secret. I figured that in order to heal from this illness that had grown out of my double life, I had to tell the truth. So a year later I went on what I liked to call an “honesty trek:” I sat friend after friend down at coffee shops and happy hours and confessed that I had been a sex worker, and I had hidden this from them. Terrifying doesn’t begin to cover it. I spent months preparing, reminding myself of what my therapist had advised: Tell people once you feel solid in your choices so that any outward lashings won’t impact how you see yourself.

I was surprised by the support. I didn’t lose a single friend! I took real joy in the freedom of answering questions bluntly, laughing with old friends, telling absurd stories I’d never dared to tell before. Like the day John took me to the National Mall in D.C., and my anxiety produced such violent diarrhea that I had to beg him to buy Imodium. He did and, unperturbed, he took a series of photos of me that day: flat on the grass with abdominal cramps, posed in front of the Lincoln Memorial, my hair slick with sweat, sunglasses crooked across my face, all the while gushing about my sex appeal. Sharing this shamed and hidden part of myself felt freeing. Like each part of myself had finally entered the same room.

Now this, I was positive, would finally stop the migraines, which had become relentless. I was suffering from one almost daily. But, unfortunately, sharing my past wasn’t the cure I’d hoped for. The attacks intensified. Residual spinners haunted my vision around the clock. My period stopped. I was exhausted, cold all the time, and my body felt as though it had given every ounce to survive those daily headaches. I tried everything—acupuncture, functional medicine, my GP—nothing they suggested helped. I really wanted to believe the migraines were a consequence of the secret life and therefore reversible with honesty, but week after week I lost faith that I could outrun the damage done to my nervous system. Eventually I accepted what I had been trying not to admit: I had a chronic illness.

It’s been six years since that realization and eight years since I stopped sugaring, and I still live with chronic migraine with aura. I see the condition as deeply tied to that secret era of my life. Sometimes I even feel validated by the severity of its consequences. Because living in two worlds had been corrosive. The dishonesty ate at me. The guilt I carried during that time.. still haunts my most restless nights. The migraines feel like a physical record of that cost.

Thankfully, I’ve learned to manage them better. I found a witchy herbalist on Instagram whose holistic approach helped more than anyone else’s suggestions, and I now live by the world’s most hilariously named diet, The Bean Protocol. It’s what it sounds like: beans with almost every meal, no sugar (yep, even fruit), and no gluten.

It’s not a magic fix. Cluster periods still come, and a week of overwork or stress can drop me into a brutal series of attacks. I still hate the migraines—the excruciating pain, the anxiety I feel around planning a full day away from home, the small stupid shit that sucks, like having to decline birthday cake (my favorite dessert )—but I am also awed by the body’s signals. The truth is, the choices we make ripple through our systems. My body had been warning me since the day I met John that shame and secrecy would injure me, and my decision to stay in that dark shadow for years had a real cost. But it’s also taught me to live in the light now. To protect my health, my self-esteem, by living authentically. Not a gift exactly, but rather a lesson learned the hard way.

Share

Leave a comment

Michelle Gurule (she/her) is a writer and educator based in Albuquerque, New Mexico. Michelle earned her M.F.A. in Creative Nonfiction from the University of New Mexico in 2021. Her debut memoir, Thank You, John, explores the complexities of sex work, class, power and Michelle’s intersectional identity.

To expand on the topic, last week, Open Secrets Editor-in-Chief interviewed Sonali about her essay, one of her first forays into first-person writing, the timeline for her mastectomy decision, how her family’s history of breast cancer impacted her choice, how she approached researching the surgery, her expectations and the very different aftermath, how her body image was affected by her mastectomy and reconstruction, mental health, family support, and her career as a journalist and fiction author (watch for her debut novel, Queen of Aaroh, in 2027 from Red Hen Press!). Watch the interview above and stay tuned for more contributor Q&As!

Learn more about Sonali and her writing, books, and her show Rising Up With Sonali at her website, sonalikolhatkar.com.

Get more from Open Secrets Magazine in the Substack app

Available for iOS and Android

Get the app

What have I done? The thought flashed in my mind like an unrelenting neon sign on a dark night. I was sitting on the edge of a hospital bed, body bound with bandages. A mummy. Living dead.

It was December 15, 2016, my first day as a “cancer previvor,” and a few weeks after Donald Trump won his first presidential election. While I, as a professional journalist, was called upon to cover the unfolding national political disaster, my own personal shitshow was taking center stage in a Los Angeles hospital room.

A year earlier, when the call arrived with the results of my DNA blood test, I braced myself. “You have the BRCA1 gene mutation,” said my genetic counselor, softly and with an appropriately sober tone. My legs gave way and I sat abruptly. “This means your lifetime risk of breast cancer is 87 percent,” she added slowly.

I instantly grieved for my husband and two children—an unusual thought considering I was the unlucky one, not them. But I know what it’s like to watch a loved one suffer and even die.

My mother has survived breast, neck, endometrial, and colon cancer. My aunt died of breast cancer at age 34. Both maternal grandparents were also victims of cancer: lung and throat. Our family history is littered with the barbaric impacts of chemotherapy, radiation, failed treatments, and fatal tumors. I couldn’t put my beloveds through the helpless pain of watching me suffer.

I’ve always been a doer. And sometimes I do before I think. I’ve steered my life by an instinct for doing the hard thing because I’ve guessed—often correctly—that it’s the right thing. And I’ve understood that stopping to consider all the possibilities could feed the fear that lurks inside.

I would act upon the medical intelligence my family members hadn’t been fortunate enough to access. Rid myself of my breasts. End them before they ended me.

“A prophylactic double mastectomy using a DIEP flap procedure” was how the plastic surgeon described one of the options available to me. Rather than silicone breast implants, I could have a brand-new rack formed from my own fat! And boy, did I have plenty of fat to spare. The surgeon pinched my ample post-childbirth belly with thumb and forefinger to emphasize just how much raw material she would have to work with.

Wait, what? New boobs made from belly fat?

It was an elegant cut-and-paste solution, one I quickly embraced. Not only would I avoid potentially messy, leaking implants, I’d get a free tummy tuck. I brushed aside concerns of numbness and complications of micro-surgery. I would turn my BRCA diagnosis into the ultimate vanity-fueled body hack.

“You’ll spend a lot more time in recovery, but it’s a permanent solution and you won’t have to worry about implants or cancer,” the surgeon explained, smiling confidently.

Yes, please!

At the same time as Trump won the electoral college in 2016, Californians passed Proposition 64, legalizing recreational marijuana. I resolved to acquire some pot for unorthodox pain relief as part of my recovery plan.

I bought a power-lift recliner to sleep on while my abdominal incisions healed and ordered a post-mastectomy robe with pockets for the drain pouches that would be attached to me, one for each breast and one for each side of my belly.

A friend set up a meal train and I cooked and froze pots of chili and lasagna casseroles to supplement it.

I explained to my two young sons, then aged nine and four, what mommy was about to do and why.

I was ready.

My pre-surgery instructions included a thorough shower the night before. No products on my skin, and no food or drink.

I bade my nipples goodbye, which is a funny thing to admit. They had let me down after the births of both my children, refusing to shape themselves into adequate milk ducts, and causing endless frustration and post-natal trauma over nursing. But they were mine.

Women’s nipples house dense clusters of nerve endings. They offer a veritable bouquet of sexual sensations.

I still remember that last shower before surgery. Remember this. Remember what these wellsprings of delicious pleasure have given you. I etched the sensations into my brain.

The surgery was 13 hours long. A breast surgeon excavated all the breast tissue she could find, then handed the baton to a plastic surgeon. She in turn spent the majority of the operating time painstakingly carving fat from my lower belly and stitching its blood vessels into my chest to form new breast-like mounds that would take root on my upper half.

When I came to, my husband was by my side, haggard and worried and happy to see me conscious. Every hour, nurses came by with handheld ultrasound machines to ensure blood still flowed past the fresh internal stitches to keep the fat tissue alive. Bump-bump, like baby heartbeats in my chest.

A few hours into my recovery, my left side grew silent. The blood had stopped pulsing. If left unaddressed, the tissue would necrotize. I was wheeled back into the operating theater, and for another nine hours the surgeon cut and stitched to salvage her work.

When I awoke a second time, my husband was still there, paler and more stressed than before. My twin babies were bandaged upon my chest, their heartbeats strong. I tried taking a deep breath—and couldn’t.

My entire chest was ensconced in bandages. A large incision stretched from one side of my hip to the other, with more bandages sealing the wound. I was wrapped so tight I couldn’t fill my lungs to capacity. It felt as though someone dropped a piano on my chest.

A nurse encouraged me to get on my feet and relieve myself on my own. I dragged the intravenous drip tower connected to various parts of my fragile body into the toilet with me, one painful step at a time, not caring if the hospital gown concealed my backside.

Afterward, I sat on the edge of the bed, panting from exhaustion and fear and hunger. I hadn’t eaten for nearly 48 hours as surgeries need to be conducted on an empty stomach to avoid aspirating food during general anesthesia. Bile reared up in the back of my throat and I swallowed it.

I’ve always been a doer. But this time I wondered, What have I done? So much for an elegant solution to my BRCA diagnosis. Rather than embody a joyful middle-finger to cancer, I was the Bride of Frankenstein. I could barely take a breath, let alone enjoy the wonders of a cancer-free existence.

I wanted to turn back time, to return to the surgeon’s consultation room and choose another way. Maybe just let the cancer come and deal with it—as legions of women have done. Anything but this claustrophobia of bandages and incisions and blood and stitches.

Focusing on my predicament veered me toward suicidal thoughts. My heart beat faster but I couldn’t pull enough oxygen to slow it down. I was straitjacketed. Buried alive. My shallow breaths were ragged, threatening to implode.

I could panic and run screaming down the hospital halls, tearing off my bandages, rending open my fresh wounds, and jump out the window into the welcome arms of a quick death.

Or I could lock my terror within that box inside my brain, the one where I tuck away my deepest fears. Tamp it down. Jam it shut. And later, much, much later, ease it open and face it with a body that’s whole and healed.

Stop, stop, stop, I pleaded to myself. It’s too late. Step away from the abyss.

When the blood flowing through my new breasts was stable and the surgery was deemed a success, I was cleared to eat. A nurse brought me breakfast. I ate it and promptly threw up.

Pneumatic compressors massaged my legs to keep blood coursing through my body as I lay prone and mentally detached. A pressure cuff squeezed my arm once an hour and a parade of nurses constantly checked my vital signs. Between drowsy binge-watching bouts of Gilmore Girls and vivid dreams brought on by potent painkillers, the days merged into nights, and time plodded miserably on. The box of panic remained hermetically sealed.

Close friends visited, horrified at my state. With my husband at home taking care of the kids, it was the nurses who offered me comfort and hope. They had cared for hundreds of patients, including many who had undergone the sort of complicated prophylactic mastectomy that I had. They had the benefit of second-hand hindsight. “I promise, in six months you’ll be so happy you did this,” said one. I latched onto that promise, an anchor in the squall.

A week later I was home. I couldn’t even lift my arms, and so my husband bathed me, washing my long black hair. I should have cut it short before my surgery, I chastised myself. It was far cry from the pre-surgery shower during which I had enjoyed my last hours of nipple pleasure, unaware of the horrors I was about to face.

My belly button was higher than it should have been. My swollen breast-like appendages were conical rather than pendulous. My body was a Dali-esque distortion. I had chosen this mutilation.

As I lay on my recliner on that first night back in my own home, I decided to wrest control. This was still my body, dammit. Sliced open and patched into a vague semblance of a female form, but still mine. I’d weaned off the prescription painkillers, so I reached for the edibles I’d procured before the surgery and popped one perfect chocolate-covered blueberry into my mouth.

I waited for intoxication to eclipse my pain. But what came was more pain.

Cannabis is an excellent drug for heightening the senses. I experienced every incision with the added enhancement of THC. My wounds were on fire. I needed medication to dull the senses, not heighten them. I was in another prison of my own making, trapped in the chair, a patchwork rag doll, paralyzed by a thousand pins, wondering how I would make it through the night.

But there was the box—the one that held my terror. I risked releasing my demons if I opened it in a pot-addled stupor. But the alternative was too agonizing.

You’re going to be fine, I told myself. This too shall pass. Marijuana highs are temporary. Stuff the fear and self-loathing into the box, grit your teeth through the pain, and sit tight.

A few hours later, as my senses dulled back to normal levels, I slept, exhausted and defeated. Could I ever trust myself again?

I’ve always been a doer. A compulsive crafter and cook. As the final season of Gilmore Girls came to a close, I propped a tray across my lap and spent hours cutting and gluing paper flowers. I practiced calligraphy and made notecards for the nurses who had shown me love and compassion in the darkest moments of my hospital recovery.

“We should eat family dinner together!” I announced to my husband and kids. But I was still too fragile to descend the stairs to our kitchen table. So my kids brought a picnic blanket upstairs and laid it on the floor by my feet. Each evening the three people I love most in this world sat cross-legged before me and dished out food dropped off by friends onto plates, ate, laughed (me, carefully so as not to rent open my stitches), and shared our day’s experiences.

As I steadily healed, I found a new show to binge—a documentary series about traditional Indian cuisine called Raja Rasoi Aur Anya Kahaniyan, which translates into Kings, Kitchens, and Other Stories. It triggered an intense desire for the nourishment I had been raised on in my Indian household. I hobbled downstairs, and slowly, painstakingly, stubbornly, cooked an elaborate meal of spiced lentils, vegetables, and rice.

The fragrance and tastes of clarified butter and tempered mustard seeds, of warm spices and steaming, simmering grains were an elixir. That evening my family and I shared the bounty. I had cooked the meal on my own, battered body and all, and finally acquired the control I had been seeking.

George Michael, whose music formed the soundtrack to my teenage years died that Christmas. I mourned him and played Last Christmas on repeat, learning how to pluck the chords on my ukulele. Four days later, two of my drains came out at my post-surgery check-up. A few weeks later, the final two drains came out. The date of my revision surgery—outpatient, thankfully—was set. The swelling had receded and my reflection was more Rubenesque than surrealist.

On January 21, 2017, 40 days after my mastectomy, incisions still tender, I returned to work. My self-assigned task: To cover the Women’s March that mobilized three quarters of a million people onto the streets of Los Angeles in protest of the Trump presidency.

The train cars to downtown LA were jammed full of people sporting pink pussy hats and carrying signs about women’s bodily autonomy. In between interviews, I held my arms aloft, terrified someone would bump into me among the throngs of protest attendees and injure my still-healing body. My feet ached and my senses objected to the inordinate exertion. But I was jubilant. I was alive. I could breathe.

I’ve always been a doer. I could have talked myself out of the surgical mutilation I endured, hedging my bets that the cancer would never come. And if it did, perhaps it wouldn’t be so bad.

But the nurse who comforted me in the hospital had been right. The worst was over and I had healed faster than I’d thought was possible. Six months after my surgery, I joined a local gym and began lifting weights. My new breasts were perky; twin terracotta nipples tattooed on by my surgeon were the final touch.

Today, the skin around my stomach incision is numb and always will be. My nipples will never again be the powerhouses of pleasure they once were, for they too are numb and will always be. The cut-and-paste seams remain stark, scars of the horror I put myself through. But they are also talismans against the terror of cancer, for I had cut my risk to nearly zero.

Sometimes, when my numb skin is dry I can feel an itch but it is tucked deep inside me where I can’t scratch. That’s when the regret returns.

All I can do is smack the skin to quell the insistent itch. The smacking can jolt open the box where I hide my terror. Dread seeps out into the places where I feel nothing and everything. And, bit by bit, the box empties.

Watch our interview with Sonali about her essay:

Share

Leave a comment

Sonali Kolhatkar is an award-winning multimedia journalist, and host and executive producer of the nationally syndicated television and radio show Rising Up With Sonali. She is the author of three nonfiction books including Rising Up: The Power of Narrative in Pursuing Racial Justice, and Talking About Abolition: A Police-Free World is Possible. She is a monthly columnist at the Independent Media Institute, OtherWords, and Truthout. Her debut novel, Queen of Aarohi, is forthcoming from Red Hen Press in 2027. She lives in Pasadena, California with her husband, two sons, her parents, and a spoiled cat.

I still wake up entangled in a Don Quixote body, tilting against itself—my immune system rumbling its ancient wagons of war, killing follicles. I’m impressed by its conviction, the way it imagines demons to take down.

Just over 30 years ago, I stood outside my diplomatic residence in Morocco raising my arms like wings. I’d been diagnosed with an ectopic pregnancy and was waiting for my husband Karim to pull up; I would undergo surgery that day.

I remember saying, “I’m sorry,” as I came out of anesthesia—sorry to my absent parents that I could no longer carry on our lineage, sorry for my husband. This lost pregnancy haunted me.

My breasts filled with milk, imagined babies. Trouble seemed written in my body, in several languages and remnants of stitches. My dear three-year-old son, an only child before we were fortunate to adopt two daughters, told me he wished he could climb back in through my belly button.

When I brushed my hair in those days after the surgery, clumps appeared in the brush and on the floor. After I recovered physically, I still imagined I was having more ectopic pregnancies. One day, spelunking alone among stalactites, I felt a sharp abdominal pain, no doubt psychosomatic, and ran out of the cave I had been exploring, fear shadowing me.

The doctors found nothing. Avoid stress so more hair won’t fall out, they said, their counsel itself a stressor. Bigger and bigger clumps of hair appeared in my hands over the ensuing weeks.

Alopecia areata. Aren’t those melodious words, like the name of a hand-built sailboat, an island, or even a galaxy?

“My hair is falling out,” I told Karim, as I stood before him with hair on only half my head.

“No, it isn’t,” he said.

Lucky for me, my husband lived in dreams and my son was too young to be embarrassed by his mother. Yet alopecia remained my banner of mourning. At first, I thought my hair would quickly return, but no.

My father back in America brainstormed with Karim over the phone. A biologist, he had a penchant for inventing cures and would send me homemade potions.

“Really?” my beloved husband yelled into the receiver. “Lora’s great grandma was bald too? Does it run in the family? Oh, was she Orthodox? Shaved her head? A wig sounds good!”

“It’s my body,” I called out from the next room. “I will never wear a wig. I’m a natural woman. I’ll only wear hats. Let me talk to my daddy!” I burst in, took the phone, and complained to my patient dad. My men bolstered me, as did my wider support system of family and friends. I knew I should be thankful, as I thought of people for whom alopecia would be even more unsettling, such as children, and singles seeking mates.

A French-trained Moroccan dermatologist tssk-ed as he held his magnifying glass to my scalp, suggesting vitamins and ultraviolet rays. “Mais, Madame!” this physician observed, raising his eyebrows and voice. “C’est une pelade totale. Vous risquez de perdre tous vos cheuveux.” (It’s alopecia totalis. You risk losing all your hair.) And indeed, I did.

Bald could now enhance my list of peculiarities as an American diplomat in the Arab world: female, Jewish, left-handed, married to a Muslim, Tunisian man. Besides my being a woman, I wasn’t sure which of these things my host country interlocutors knew about me. I did more listening than talking at work. But I must have seemed on the odd side even before my hair fell.

I did understand that in Arab culture, communication passes through warmth and charisma. At a subliminal level, I clicked in North Africa, a place that runs on intuition, poetry, warmth. In that atmosphere, baldness didn’t really change my ability to work. Also, life isn’t so easy for people there—difficulties are understood.

In those days, I daydreamed of a bald world where I could stride about without disguising my alopecia. Our housekeepers, strong and stout with smooth black hair, Warda Ait and Mona Alami (not their real names), fussed over me, said their hair was falling too, and yanked out tufts to convince me. “You have to sit in the sun,” they counseled, dragging big Berber pillows onto our balcony. I sunned there, where neighbors couldn’t see.

Wardatold me, “My mom says hot peppers could cure you.” She made a paste of pepper, then massaged it into my head.

“Ow!” I cried, my scalp turning scarlet.

“My mom told me it’s bad blood,” said Mona. “You have to let it out. You should make razor scratches on your scalp in a crisscross pattern, then rub in garlic and kohl. Our neighbor did it. Her hair grew back overnight.”

“Hmm,” I said, keeping my mind open. “Maybe not the razor, but garlic.” She mixed some garlic with henna to rub on my head.

“In any case,” Warda and Mona reminded me in unison, “you shouldn’t think too much.”

People in Rabat would blame the onset of alopecia on the water, air, worms in wool blankets, stress, genetics, tooth infections, pregnancy, shock, or a mix of the above. Everyone knew a woman who had lost some hair.

In fact, about one-third of women worldwide experience hair loss at some point. And by age 35, two-thirds of all men do. It is so ordinary, it hardly seems problematic, and yet we are socialized to see it that way.

After I began wearing hats, advisors appeared all around me. They knew what I hadn’t told them. Abdesalam, the waiter at the café where I often had tea, vouched for a recipe from the Rif, Morocco’s hashish heartland: hash seeds heated over a slow fire, mashed in the mortar, mixed with olive oil, and rubbed in. “That’s what we do in the mountains,” he said.

Abdelhamid, a Sufi embassy driver, proposed Sudanese pepper mixed with ashes of the blue paper used to wrap sugar. “When other cures fail,” he said, “try mine. And remember I told you.”

My Arabic teacher took me to visit a barber with a gentle smile, a known healer. In a soft, reassuring voice, the barber offered me the razor-on-scalp treatment, but I turned him down.

I kept thinking alopecia was my fault, something wrong at my core. I cried a lot, as hair began to disappear from my legs, arms, armpits, crotch. A last effort, Amina and Amina took me to see a sorcerer in Takkadoum, a popular neighborhood on the fringe of our upscale section of Rabat. Outside this man’s shop, we joined women waiting in a long line. Once we made it inside, the portly, cheerful provisioner with well-oiled skin invited us to sit down. He stood before a wall covered, floor to ceiling, with shelves holding dozens of bottles of ingredients—from dried bits of animals, insects and plants, spices, and perfumes, to a rare Yemeni honey.

“Even government officials come here,” whispered Amina Mama.

“And how can I help you ladies?” he asked, to which Amina and Amina offered a description of my woes. “Allah is miraculous. I see, I see,” he responded, taking a paper and tallying numbers which added up to over 100 dollars, a lot for that area at that time. A dab of that precious honey ran up the bill.

“We’ll think it over,” I said, firmly grasping my friends’ arms and heading for the door, but to my consternation, they turned and went back in, ordering potions for ailments of their own. I had become pretty savvy about prices and felt this healer hadn’t set his high price based on my foreign look, but maybe on his estimate of how much I needed a cure. I worried Amina and Amina might be had. But if a potion gives a person confidence, maybe it is worth the expense. And maybe his cures actually worked. What did I know?

All those suggested cures made me feel cared for and gave me a sense of belonging, even if the traditional approach could sometimes go too far. For example, before my arrival, a medical disaster had stalked my office at the American Cultural Center. My predecessor had developed multiple sclerosis, and our staff suspected the space might be inhabited by a jinn. Therefore, an exorcism had been carried out by an imam just before I came. Yet the jinn must have hidden under the desk, stirring up mischief with my alopecia. At least it would seem so, if a person believes in jinn.

To manage my alopecia, I tied a scarf with a bow behind my head and perched a hat on top. If prior I may have appeared as a loose Westerner in the eyes of some who wore the veil, I now became an even stranger bird, a veiled one. To some, the hat must have appeared as my effort to cover myself, as per scripture, in modesty. Never had I felt the pressure that surrounds veiling so intensely. One day on the train from Rabat to Fez, I sat across from an unveiled woman who said, “I work every day and do all I should. Yet I am criticized for not covering my head. And now I have to sit across, Allah help me, from a Western woman wearing that get-up?”

Should I pull off my hat, I thought, and scare this person who lectures a stranger? But I felt sympathy for her. The veil discussion took up so much space when I lived in the Arab world, crowding other conversations. I closed my eyes and kept my mouth shut. I would also have been thrilled to not think about veils. But during my years in the region, I constantly heard variations on the great veil discussion, to cover or not to cover, through my big ears under floppy hats.

This was before the prevalence of the internet. Only when I arrived back in the U.S. did I learn that Moroccan folk cures for alopecia were spot on, matching those of American doctors I consulted: ultraviolet rays, garlic, capsaicin, irritating the scalp. Inhibitors of the 21st century weren’t around yet.

A nurse practitioner who was an old family friend told me as she tried to dampen my expectation of hair growing back, “I’m fat. You’re bald. That’s just how it is.” Somehow, that made me feel much better. Facts of life.

Also in the U.S., it finally occurred to me I could, after all, wear a wig—and I have ever since. I chose a short one with a color lighter than my original walnut hair and have stuck with it. Wigs started to seem like a blessing—no hairdresser needed. No confusion about my motives for covering my head.

Now I’m in my sixties but wear a wig with no gray. I’m not sure what people notice when they see me, perhaps an older woman hiding her age with a wig? It doesn’t matter, because I’m at ease. Ever more the sphynx cat, I smile and stretch. I don’t want to try new medications with all their side effects. The older I get, the less I want my hair back.

Without hair, I feel smooth and fresh in my skin. Lately I’ve lost even my eyelashes. Autoimmune conditions come in suites, and I sometimes fear that my immune system may now turn its energies against a more necessary organ.

But as far as hair is concerned, women often try to remove hair from every part of their bodies except eyes and heads, while I am free. Why want hair? Being hairless is a way we distinguish ourselves from other mammals. I often feel light, airy, as if I could fly. In summer I feel cool, and in winter I wear a hat. There is a myth that people with alopecia tend to be sensitive and even kindly, and I like to believe this.

It is as fine to be bald as to be hairy, yet for profit, the hair potion industry underwrites research and launches campaigns to make us perceive baldness as a problem. I have yet to venture out without a wig in public, no matter how often I claim that baldness can be graceful and even signify power. Maybe this essay is a first step. As my son, now grown and a tech founder, tells me, “For god’s sake, mom, Bezos is bald!”

This is my code, my DNA, and at least as far as baldness goes. I’ve been on a journey and finally come to appreciate my condition. DNA is itself like a culture, the culture of my body, set in its ways. I’ve come to appreciate it, just as I appreciate the old-world culture I was raised in, with all its inherent illusions. Besides, don’t innovations, discoveries, improvements, often come about by “mistake?” Maybe we aren’t a bald species, but we might become one someday. Bald and wrinkled as a sphynx cat, I’m learning to be at ease with myself.

One day on a mountain top, a wish (without an eyelash) wafts to mind, and I understand the distance I’ve come to appreciate alopecia: I don’t wish on an eyelash, since I have none. It’s not that I miss them. Hairless, I dance in my silken body. I wish to wish, and so I do, on shooting stars, raindrops, ladybugs, dandelion puffs. My wishes rise, undeterred to glide in the wind, bright as swallowtail kites. I wish for people to know, it can be beautiful to live this way.

Share

Leave a comment

Lora Berg wrote The Mermaid Wakes, a collaborative book with visual artist Canute Caliste, and has published poems in Shenandoah, Colorado Review, The Carolina Quarterly, etc. She served as Poet-in-Residence at the Saint Albans School and holds a Johns Hopkins MFA. Lora worked abroad for many years at U.S. embassies as a cultural attaché. She is a grandma in a vibrant, multicultural family.

Andrea Gibson saved my life.

Long before themself did, their writing moved me at my core. Months after moving to Denver in early 1999, I was in sought-out belly dance classes at the Mercury Cafe, and a part-time staffer not long after that. One of the benefits that came with bartending in the dance hall is the biannual pause on usual programming for a weekend of shows by feminist theater troupe Vox Feminista.

The standouts from those shows include the first time I heard the phrase “May the Forest Bewitch You,” the video of the cast’s visit to the visitor center of Focus on the Family, and each and every time Andrea Gibson stepped up to the mic. Shows were always packed, and every attendee was stunned into silence when Andrea spoke, so much so that most of the room could hear the motor of the ice machine and beer cooler behind me at the bar. They had not been in Boulder for long, and we in the audience were the lucky ones to be in on this gift from the start.

Over time, I lost track of their accomplishments other than noting their National Slam successes. I was thrilled when, on a visit to see my family in New York, I saw their name as an upcoming headliner on an electronic marquee near Times Square. This success couldn’t happen to someone more deserving of being heard.

I was a relatively late adopter of Instagram, just months before Covid hit. Once I did, I paid mind to some follow recommendations based on my Facebook feed and was soon following Andrea. To be honest, it was never a specific poem that grabbed me but their work, and their observations, in general. I saw the world from not just a different perspective but with far more nuance than I myself had the capacity to perceive when listening to them. Their words themselves would fade from my mind almost immediately after hearing them spoken, but the desire to have Andrea’s subtlety of words, of insight, of feeling, of depth, remained. And whenever a reel or post showed up in my feed, I would watch and listen. I didn’t have their highs. I also didn’t have their lows. As the world hurtled into Covid times, like many, I relied on social media for connection. In the face of adversity, some people withdraw, some become more shallow, and others find how deep they are. I was, and despite the past few years, still am, much more the former. Andrea was the latter.

Flash forward to 2021. The lone symptom started that spring and was rather innocuous. Then, much less so and most definitely problematic. There was no pain, just vaginal discharge that evolved into colors that should not be exiting one's uterus; it was not at all bacterial or viral. I had been a health care provider for 15 years before changing gears with master’s degrees in Acupuncture and Asian Medicine and Public Health Policy, but I was, and am, always more likely to push others to seek answers for issues that would arise than myself.

I emailed the medical director at the clinic where I received primary care, as my provider had recently retired, who replied with agreement that I had a symptom in need of testing and that I would hear from the clinic staff to schedule an appointment shortly. Over a week later I saw the reel Andrea had posted a few days earlier, sharing their diagnosis and treatment thus far.

It had been several days since I was told I would be called and hadn’t been; it was time to do as I told others. I called the clinic, waiting on hold for a solid half hour, only to be told, “oh yes, we were supposed to call you and schedule you last week.” I was in the office three days later. Then, the referral and waiting games, and the begging for the soonest available options, began. At this same time, I noticed that Andrea started posting about their experience being diagnosed with and undergoing early-stage treatment for ovarian cancer. Their postings shook me awake.

My late Eastern medicine mentor, a brilliant pulse diagnostician, had told me two decades earlier that if I were ever to have cancer that it would be gynecological. But it couldn’t be that; it was likely just old endometrial lining sloughing off thanks to the fibroids that hadn’t shrunk post menopause as expected.

Each step took way longer than it should have, but Andrea’s posts and videos were both a bolster and a balm, supporting me in being noisy, putting myself on cancellation lists, and doing what I could to get in for testing as soon as I could. In a process that involved scheduling for incorrect tests and needless delays, I finally received an endometrial biopsy after three and a half months. While dealing with what turned out to be permanent vision damage from the scopolamine patch prescribed for significant gastrointestinal difficulties from anesthesia, I received the results via my online portal that my biopsy result was adenocarcinoma, a cancer of the endometrial lining.

But I had Andrea’s Instagram missives to follow as support and, on the day I was running back and forth to the Denver Health campus to make sure my blurred vision was a now-permanent side effect of scopolamine and not something worse, while finding out my diagnosis and trying to take it all in, Andrea posted a video of themself reciting a poem, “Instead of Depression,” from the book they were just days from publishing, You Better Be Lightning. They said, in part:

try calling it hibernation.

Imagine the darkness is a cave

in which you will be nurtured

by doing absolutely nothing.

The course of treatment was standard, starting with a radical hysterectomy, plus removal of fibroids and a pelvic lymph node from each side. But with no one besides me having any sense of urgency, it took seven weeks (postponed from five) from the biopsy when I finally went in for the surgery. I had switched my insurance during open enrollment the week before my biopsy, but it wouldn’t go into effect for two more months, leaving me with the city hospital I had been happy to support by paying into their insurance plan when I was a low utilizer of the system. Needless to say, when the results came in three weeks post-op, I was the only one not surprised by the stage 3 diagnosis and thankful that it was a new year in which I had a new insurance plan.

With a change of providers, my treatment progressed at an accelerated rate from pre-chemotherapy preparation to the chemotherapy protocol of three and a half hours of chemo infused every three weeks for a total of six sessions. I lost my hair quickly, despite using a cold cap for the first and second infusions, and developed debilitating peripheral neuropathy and pain that might have been even worse if not for my cold pack-stuffed mitts and socks (unlike Andrea, I never took mine off to write, but I did occasionally take a mitt off to more easily turn a page), but surprisingly had few digestive difficulties as it’s the one symptom for which there are truly effective medications. It was frustrating to have everyone ask why I lost no weight during treatment, and even gained a few pounds.

One of my most interesting chemotherapy experiences was just how functional eyebrows and eyelashes are, something I’d taken for granted until they fell out. And if chemo is debilitating, radiation on top of it is utterly exhausting. Even though I achieved the unexpected—a PET scan showing no evidence of disease following the chemo protocol—I went through a somewhat shortened course of radiation on the specific formerly metabolically cancerous lymph nodes to further diminish the possibility of recurrence.

I spent the bulk of the summer of 2022 in bed or sprawled on my late grandmother’s chaise I had inherited decades earlier, sometimes too tired to choose something to watch on TV and mindlessly scrolling Instagram, slightly perking up for the occasional reel, including those from Andrea. However, it was devastating to see Andrea’s announcement of a recurrence midway through my radiation treatment series.

I made it through treatment, was deemed recovered enough to return to work (even though I wasn’t), and continued to move forward on automatic pilot. I pushed myself to take a couple of local weekend trips, flew to New York for a full week of Chinese movement practice qi gong on the one-year anniversary of my final chemo session, and then left my job to purge and pack what I kept in storage in advance of what became a 10-month road trip of the west and move back to my hometown of New York. Throughout, I went for biannual scans, continually coming up clean. Having an estrogen-fed tumor and no longer having a source of estrogen in my body had left me in a good position to remain no evidence of disease.

One thing I never really did, at least not with the subtlety and depth of Andrea, is fully integrate my experience. Was that because I received that no evidence of disease test result, the most recent of which came in late May of this year, while Andrea’s was terminal? I would listen to Andrea move through their final years with profundity, joy, and utter presence in the present. I counted the days until I could leave my job, until I left Denver. I thought of the future destinations on my road trip as much as I was present where I was, blinders on and ever pushing forward.

It took months on the road to plan and book accommodation no more than two weeks in advance, to be able to roll with last-minute changes, to realize I didn’t have to see everything in my path, and to be as happy with JOMO (joy of missing out) as I was stressed by FOMO, and be as present in my present as possible, even if it wasn't very much. I succumbed to poor sleep and an irritable demeanor and pushed through on my travel agenda despite fatigue and injury. I even kept chugging along my first few days back with my parents, washing, sorting, and finding places for everything I had crammed into my car within 48 hours. And then, I stopped.

Despite working on resumes and periodically applying for jobs, I have spent nearly the past year just being. Sitting around, sleeping (sometimes successfully, more often not). Taking advantage of the fact that my parents are still alive and spending time with them, but not enough. Not taking advantage much of being back in the city that, unlike me, never sleeps and hiding out while in one of the most exciting places in the world. Not applying for as many jobs as I tell people I am. Overthinking life, as opposed to living it much.

It’s just over a week since Andrea died, and I am relistening to reels they recorded over the years of their illness to remind myself of what it was that saved me. Superficially, it was their willingness to share their experience in a sincere manner, not for the clicks and views, that was what kept me nudging schedulers to get the needed treatment.

But I am still in utter awe of how their illness seemed to ground them and how it opened up a new creative wellspring within them that I could never find in myself. That they continued to create, stringing together words more moving than ever. The soft but strong fight against their disease, and ultimately the acceptance of its permanence and their new, time-limited reality. We are all time-limited, but I imagine there is a clarity in having a more solid idea of when that time will expire that helps give shape to living. If there is one for when the time limit is expanded, I’ve yet to find it.

I am living today

As someone I had

Not yet become yesterday

And tonight I will borrow

Only pieces of who I am today

To carry with me to tomorrow

Andrea Gibson Instagram post 8/26/21

Thank you, Andrea. May your memory be a blessing.

Share

Leave a comment

Jennifer Gross has written extensively in her head for years, with only the occasional sentence making it to paper or an electronic document. An endometrial cancer survivor of just over 3 years, she prefers to keep her hair short since it grew back in post-chemo, but wishes her eyelashes were as long as they used to be before treatment.

Nearly fourteen years ago, I stood frozen in the bra aisle at Target, my body working overtime to build, cell by cell, one of the most perfect human beings ever created (only rivaled by their younger sibling). Those microscopic machinations were reflected in the mounds of breast, belly, and backside that defined my corporeal topography, announcing to the world, “Baby on Board!”

My partner and I had been looking at diapers, bibs, and other items we didn’t feel like paying a premium for at Buy Buy Baby. As I dithered about whether Babar the Elephant matched our existing theme (spoiler alert: baby themes don’t matter when there’s spit-up on the clothes), he had wandered to the electronics section, no doubt shopping for a video game to keep him occupied when baby and I would be napping. After waiting a few minutes—the max of my BC, or “before child,” patience—I decided to head over to the nursing bras.

I walked through the non-pregnant bra section, my eye catching on the various specimens as if I was sifting through my family’s Kodak slides. Each style projected a moment of my life: the nondescript plain white ones that were the only choice available to my mother’s generation in India, the racerback styles that always chafed my deltoids, and the practical front-close ones that I preferred. I giggled at the selection of lacy and racy numbers that no doubt led to more than one wearer finding themselves in my current state. Collectively they exuded a halo of furtive come-hithers, a silky feeling of trespass, a purplish sense of magical anticipation. Whether for a new workout or a new date, new bras always meant titillating new possibilities.

Not seeing the maternity bras, I rounded the corner and stopped short. The swooning mood of the previous aisle poof-ed away under the fluorescent lights that hummed overhead like the not-so-subtle whispered gossip of South Asian aunties. I stared at the small plastic hangers of plain white, black, and Band-Aid-“skin”-toned cotton bras that hung in neat rows, lined up like soldiers ready to perform their mammary duty. The hair on my arms rose, perhaps in response to the sudden chill.

I picked up the hanger and turned it around, studying it from all angles. It looked… utilitarian…not exciting in any way. “Well,” I thought, “at least it will feel soft against us.” I reached inside to look at the size on the tag. 34B…perfect! That’s the size I usually wore—

Suddenly a slight sweat broke out on my neck and my heart began thumping wildly as my brain tried to work out what my body already knew. Then it hit me.

I wasn’t currently that size and I didn’t know if I would ever be that size again.

I braced my arm against the display and leaned forward, trying to catch my breath. The fluorescent lights trained on me like spotlights in an interrogation room. Snatches of What to Expect When You’re Expecting swam before my eyes:

“They may get engorged when your milk comes in… get bigger to match your growing baby…

“Bras that are too tight can cause mastitis, a painful condition…”

“Your nipples may get raw and bloody. Wearing a bra could be especially painful…”

The tag blurred. Hot tears pricked my eyelids as the folly of my intent hit me. There was no way to predict how much my breasts would swell postpartum. The illusion of preparation created by baby shower registries was just smoke and mirrors; I couldn’t buy control any more than I could register for guaranteed peaceful nights of sleep. The naked fact was that I was utterly unprepared for motherhood.

It’s strange to feel this thing, this corporeal vessel you’ve known your whole life, suddenly act with its own agenda. It’s a sense of betrayal that, to be honest, I’m not sure I’ve fully overcome. Now, as I pass my mid-century mark, it’s not much different—I simultaneously have a sense of control and feel a complete lack of it.

Like most mature South Asian women, I’ve learned what I need to maintain my flawless skin (retinol and sunscreen), a full head of hair (oral Minoxidil), and physical strength to ward off osteoporosis (weight-bearing exercise). But there are changes I can’t see or measure which are life-threatening. As I enter menopause, my cholesterol and blood sugar levels are skyrocketing dangerously high. Despite continuing to make healthy choices, I feel entrenched by cultural shame that I’m not “controlling” myself—as if my pancreas should respond to stern talking-tos and my liver could be shamed into better behavior. And I’m not alone in experiencing this biochemical betrayal.

Our South Asian culture is so judgmental when it comes to other people’s weight and health issues. We assume the subject of our gossip is eating “too much of sweets” (because apparently no one can resist ladoos), or is “too lazy to exercise” (ignoring the fact that South Asian women especially are juggling more roles than a Bollywood movie star). The whispered commentary follows women like me like insidious shadows: “She’s let herself go,” they say, as if her health is fully in her control.

In fact, it’s a well-established medical fact that menopause makes sugar and cholesterol levels go haywire, but somehow this isn’t common knowledge. How could it be? Most doctors get just one day to learn about menopausal health in med school, so not only are they struggling to keep this crucial information front of mind when treating patients, but the general public is completely unaware of these significant changes happening to uterus-bearing bodies. Combine this lack of widespread awareness with the fact that South Asians develop diabetes and heart disease at a lower BMI than other racial/ethnic groups, and we have a recipe for disastrous health outcomes for my identity group...and no one is talking about it.

Enter tirzepatide, most commonly known by the brand names Mounjaro or Zepbound. After a year of monitoring my health and implementing her suggested lifestyle changes, my doctor prescribed Zepbound six months ago, and I have a lot of feelings about this:

“What is wrong with me that I can’t train for a marathon/eat more broccoli/do the work?”

“I can’t tell anyone in my family, they will think I’m a helpless, hapless, vain woman.”

“What will my new Substack bestie, , and her iWeigh campaign, think of me?”

Now, those who know me also know I spend very little time on what other people think. (To wit: I reserve jeans for “special occasions” and my Minoxidil-luxurious tresses are rarely seen out of a messy chignon). However, it’s hard to erase decades of culturally entrenched conversations, ambushing my self-confidence when I least expect it. For a while, these thoughts made me miserable:

“I’m writing, I should be exercising.”

“I’m eating, I should be fasting.”

“I’m spending time with my kids, I should be doing something—anything—more active.”

Notice that pattern? The constant “should-ing on myself” is just the surface symptom. Beneath it lies a lifetime of internalized messages about control, discipline, and self-worth. And to punish myself even further, I’ve gone down a rabbit hole on all the possible changes that could happen to me. Of course, there’s the weight loss, but will my skin get saggy so I resemble the elephants we saw last summer at The Sheldrick in Kenya? Will my hair fall out despite my devotion to Minoxidil? And most importantly, will any of this actually achieve our real goal—lowering my cholesterol and blood sugar levels?

Unlike pregnancy, there’s no What to Expect When You’re Menopause-ing guide for South Asian women—though someone should write one, complete with footnotes on how to handle the comments from those loudly whispering elders. We’re writing it in real time, and there’s woefully little information on how this drug specifically affects women of color.

Fortunately, I’m not experiencing any déjà vu of that gut-wrenching panicky feeling that I had so long ago in Target. Maybe it’s having been through two pregnancies, maybe it’s being emaciated from a life-threatening illness, maybe it’s the wisdom from age and experience that has taught me that nothing is forever—not body shapes and sizes, not personal and professional struggles, and not what others say or think about me.

Instead, I’m prioritizing what I’m saying to myself. In this uncharted journey, I’m discovering that the most profound changes aren’t happening to my body—it’s how I’m finally learning to replace the inherited chorus of “should-ing on myself” with my own authentic voice. A truthful voice with which I’m saying the quiet parts out loud.

Share

Leave a comment

Sandhya Jain-Patel is a writer and multicultural storytelling specialist whose diverse background as a “third-culture kid” informs her unique storytelling perspective. She is currently working on a sci-fi fantasy series based on Indian mythology, and publishes occasional musings at Jain of All Trades. Sandhya is co-author of the Wall Street Journal bestseller Beyond Diversity, and her TV pilot, Sarah/Swati, placed in the Second Round in the Drama Pilot category at the 2021 Austin Film Festival. A Fulbright scholar fluent in three languages, Sandhya holds multiple master’s degrees in sciences and arts.

I sat in a Beverly Hills doctor’s office, across the heavy wooden desk of a hepatologist, stunned by the words leaving his mouth. He was handsome, with olive skin and an array of framed degrees hanging behind his salt-and-peppered head of hair. After blood tests revealing elevated liver enzymes, an ultrasound and a Fibroscan, he spoke words I never thought I would hear: “You have Stage 1 fatty liver disease.” I was 49—a bike-riding and yoga-loving vegan who had never done recreational drugs and had not had alcohol since my early twenties.

My father had died ten years earlier of something similar—nonalcoholic steatohepatitis (NASH), a condition he didn’t know he had, but he’d been a heavy smoker until his heart attack in his forties, as well as a meat eater with a beer belly and all the stresses that I imagine came with raising two kids on his limited income and education. He suffered a myriad of health problems I never had—diabetes, heart disease, psoriasis. When my mom, sister, and I urged him to eat better, he would point to an iceberg lettuce salad topped with shrimp or fried chicken, drowning in ranch dressing, proud that his choice was no longer what he called his “Big Mac attack” of the old days.

As I contemplated my new diagnosis, I flashed back to my father’s pill box full of nine medications per day, his complaints of their side effects, and the slow death he endured over a week, intubated in the Georgetown University ICU where there had briefly been talk of a liver transplant—possibly using a piece of mine—until each of his organs gave out.

I asked the doctor what came next for me. “Statins are safe. All of my patients are on them,” he said.

“For how long?” I asked.

He shrugged and looked at me incredulously. “Until they find a cure,” he said. My heart fell, then he added, “I mean, it’s reversible at this stage, but most people won’t do that.”

“Try me,” I said, sharing my father’s medical history and cause of death. I expressed my hesitancy to rush to medication.

“You can try diet, exercise,” he said, closing his folder and heading out the door without eye contact. “I’ll give you six months to see what you can do. Come back and we’ll do another scan. If you can’t reverse it, we’ll have to do statins. The nurse will give you some literature.”

I left this doctor’s office, walking through his waiting room full of an ethnically diverse bunch of people mostly twenty years older than me. I gripped a three-page printout explaining fatty liver disease and offering a list of foods supposedly good for the liver: cheese, meats, fish—things I had not eaten in decades and wouldn’t be eating ever again. I felt helpless and scared, wondering if this was just my genetic destiny.

I had always been curvy yet had never been labeled as overweight by my BMI. But as a Gen X woman who came of age in the skinny-worshipping 1980s, I certainly knew how to lose weight the unhealthy way. Slimfast, the misfortunately-named Ayds diet pills, Jazzercise, the cottage cheese and grapefruit diet, meals of Diet Mountain Dew, repeated use of Cindy Crawford Workout VHS tapes, and briefly, bulimia.

I was very unkind to my body back then, but I assumed that mindset was well behind me. I had stopped eating animal products in 1989 out of compassion for animals and in protest of factory farming. At the same time, I thought this new way of eating was good for my body. I spent a good part of my twenties and thirties learning to undo media-driven body ideals. Punk rock, feminism, and therapy freed me from disordered thinking, while finding exercise I loved turned me from the asthmatic kid who couldn’t run into a yogi who did daily handstands for fun.

I married a man who was an active, food-loving vegan, too—someone who never struggled with weight himself and who has always loved me as I am. We both wondered about this new diagnosis, questioning whether losing weight would really solve my issue. And if so, could I do so without buying into diet culture, which had potentially hurt and killed just as many people as liver disease?

Research led me to learn more about the liver, the organ to which Nobel Prize-winning poet Pablo Neruda wrote an ode, addressing it as “Modest, organized friend, underground worker…” In Greek mythology, Prometheus was punished for stealing fire from the gods by being chained to a rock, where each day an eagle came to eat his liver, which would regenerate daily, perpetuating the punishment. A Persian friend told me that to say “jeegaré man-ee” in Farsi roughly translates to you are my liver, a deep expression of affection. Then a traditional Chinese medicine doctor told me the liver holds our anger, stating that mine was “hot,” then prescribed some herbal tea. It looked like a pile of leaves and tasted like bile, but I gave it a shot for a couple of weeks.

What I learned was that being vegan wasn’t enough to combat my liver problems. I had to cut processed food out of my diet, now eating for my life. I had once enjoyed all the new plant-based products coming onto the market, and by my forties, maybe I’d enjoyed them a little too much. Just as foie gras (French for “fatty liver”) is produced by overfeeding ducks and geese for the harvesting of their innards, humans, it turns out—even vegan ones—can do the same to ourselves.

Eating plants wasn’t a new thing for me but giving up mock meats, chips, and vegan ice cream seemed a small sacrifice to avoid medication. I shunned all cooking oils—yes, even “the good ones”—learning to read packages more closely, finding they made their way into unexpected places like plant milks and dried fruits. My husband was on board, happy to jump in to help with the cooking, though also enjoying cookies and my other off-limits foods while at work during the day, far from me.

I learned I was far from alone in this health crisis. The American Liver Foundation calls fatty liver disease a silent killer, estimating at least one in three adults in the U.S. have it, many who are as unaware as I was, with NAFLD (non-alcoholic fatty liver disease) affecting up to one billion worldwide and being the most common form of the disease in children. It’s increasingly common around the world thanks to the exportation of the Western diet via fast-food outlets. There is no cure once it reaches later stages but in early stages, like mine, it can be reversed.

By the time I went back to get my labs done six months later, the COVID pandemic had the country on lockdown. While my bloodwork showed the normal AST and ALT enzyme levels of a healthy liver, the hepatologist said we couldn’t be sure of the absence of disease until another scan could be done.

I returned to his office in February 2022. When the nurse weighed me, I didn’t look at the scale, but she asked if I knew I had lost fourteen pounds. I said I knew I had slimmed down, but I didn’t care about that particular number right now.

I laid on the table and lifted my shirt for the doctor to move the Fibroscan under my right ribs and around the area of my liver. He left and I waited in his office, where he returned within minutes to declare, “Your liver is normal sized!” He went over my numbers with me, showing me the earlier “liver stiffness score” versus the new one. I don’t think he noticed the tears in my eyes.

He said I could come back annually to check on things if I wanted to or he could discharge me with “No Return.” I chose the latter. I eat whole, unprocessed foods now, with a focus on nutrition and caloric density, determined to avoid the fate of my father.

I don’t have the sexy “before and after” pictures of reality-TV-style transformations. I look pretty much the same as I always have. But I have my health, along with a newfound appreciation for this organ, this filter of the body with the capacity to heal after all the damage I’ve inflicted upon it. I have peace of mind, something as invisible in photos as the liver itself.

I only wish I could have saved my father, though even if given the information I have now, it’s unlikely he would have used it. As he often liked to say: “We all have to go someday.” That’s true. There will come a time when I can’t outdance death, but I will do my best to make that later rather than sooner.

Until then, on some mornings in bed, just before I rise, I place my hand beneath my right rib, in a gesture of gratitude, citing the end of Neruda’s poem “Ode to the Liver:”

I love life: Do not betray me! Work on!

Do not arrest my song.

Share

Leave a comment

Shawna Kenney is the author of the award-winning memoir I Was a Teenage Dominatrix (Punk Hostage Press), co-author of the oral history Live at the Safari Club: A History of harDCore Punk in the Nation’s Capital 1988–1998 (Rare Bird Books), editor of the anthology Book Lovers (Seal Press) and co-author of Imposters (Mark Batty Publisher). Shawna is a contributing editor at Narratively Magazine while her nonfiction work has appeared in The New York Times, Playboy, Ms., Brevity, Vice, Pitchfork and many other outlets. She hosts Hamlet's Hideaway, an annual writing retreat in Denmark every summer, and teaches creative writing with the UCLA Extension Writers’ Program.

It was starting. Lightning bolts streaked across the screen! A cartoon prince shouted and thrusted a glowing sword into the cracked sky! Yesssssss! My shuddering frail body pulsed with excitement. As a five-year-old boy in 1984, He-Man was my man. He promised transformation to a generation of young boys—from whiny privileged punks into proud humble warriors.

I reacted exactly how Mattel predicted. I gotta get a sword! So I headed over to James’s house. Born four months apart, James was my moody, freckle-faced stocky neighbor. We grew up pretending to be He-Man and Conan the Barbarian or taking turns jumping off the top rope of his shag couch for a smashing double-ax-handle like Macho Man Randy Savage.

Yes, we captive boys were the target market of the 1980s toy superhero trend. That meant a steady diet of televised ripped torsos and Technicolor cereals, filling our stomachs with rainbow-hued corn syrup and our minds with the muscley men of Saturday morning TV.

How was I to know that it was all a marketing ploy? Sure, Mattel had already Barbie, but in 1982, they demanded to reverse engineer a boys’ toy after seeing the colossal success of the Star Wars action figure lines. The cartoon show He-Man and the Masters of the Universe was created solely to sell the toys. And it worked, hitting a peak of $400 million dollars in 1986.

It certainly worked on us. James and I were ready to become heroes, creatures far better than our default weak selves. Of course, the strange twist of He-Man is that he didn’t really transform that much. Prince Adam had the same voice and haircut, and clearly had bulging muscles underneath his skin-hugging shirt. The only difference when He-Man raised up the Power Sword? Some lightning bolts popped his shirt off.

By the time I reached college, I was popping my shirt off every chance I could get. Never in public though. Always alone in my dorm room, scorning my skinny frame in the mirror. Ugly. Gross. Weak. At 6'3'' with frizzy hair and weighing only 185 pounds, I was a Transylvanian misfit (I blamed my mom’s Hungarian heritage). People told me I was lucky to have a fast metabolism, but it felt like a curse. To make matters worse, even when I bulked up, the gods double cursed me with disgusting iridescent pink stretch marks on my burgeoning biceps. Maybe it was all the creatine and weight-gainer shakes? But come on, there’s no such thing as gaining too much, too fast, right?

Though Rutgers University had 25,000 students, I kept company only with Conan and my childhood icons. Popping another late-night DVD into my TV, these were no unconscious kiddie consumptions. I’d gorge on midnight barbecue chicken cheesesteaks, gravy fries, dozens of Twix bars and Reese’s peanut butter cups, to the point of crippling stomach pains, all while actively telling myself: Yes. I am Conan, William Wallace, and Johnny Utah. And I’ll do better tomorrow.

In retrospect, this all tracks: my high-school friend had dubbed me a chameleon because of how easily I changed personas; I could shape-shift from an unshowering barefoot Grateful Dead hippie to a CK One cologne-spritzing club kid in no time. My self-membrane was always super squishy—a body with no border, like a photo of a ghost. Maybe this was why I was drawn to the squat rack? To feel the actual, physical boundaries of my body. To build myself up from a feeling of nothingness. If my muscles were pumped and defined, then I was more defined. I existed.

As a college gym rat lifting weights seven to ten times a week, my chest got bigger while my world became hyper small: chasing six-pack abs, extra lean protein, and fragile self-centered egoism. I was so alone and afraid of being rejected that I had to squeeze my stretch-marked arms before walking into a room. Though I worked out in a bubble, I wasn’t unique. Nearly seven million men will have an eating disorder at some point, most commonly binge eating. One in ten gymgoers will suffer muscle dysmorphia.

The relief switch for me? Numbing myself with more processed binge food, especially late-night sprees to the dorm room vending machine. The hardest part was hiding my obscene quantities. Even when successfully concealed within pockets, those mini packs of Cheez-Its simply became shame maracas. Every step and movement created a crinkling alarm waltz, signaling to passersby that I had an unforgivably abnormal number of cheap snacks stuffed into my pants.

How does someone slip further and further away in the middle of the bustling transformation that is the higher-learning microcosm? It’s easier than you think. At one point, I deliberately leaned into an experiment. “Don’t Speak” by No Doubt had been playing in the dining hall. My rule was: Don’t open my mouth and don’t use my vocal cords. I wanted to see how far the quiet went. It was a reflection of my thin sense of self, not some Zen vow of silence for self-compassion.

My experiment worked. For one month, I shut down my voice. I wore headphones all over campus, signaling that my “do not disturb” sign was hyperactive. I avoided eye contact, sat in the back of class, and politely nodded while holding the door open for my fellow students. I even stopped ordering takeout over the phone and did stealth runs for vending machine candy using extra baggy cargo pants to hide my shame snacks. No one noticed.

Eating disorders have been called the “silent scream.” Men especially don’t talk about it, which means that we’re lonelier and more isolated than ever, with the number of adolescent boys struggling with disordered eating on the rise. We bury it in the sneakiest of places—right on the surface. “Ha, yeah bro, no, I totally ate too much last night.” “Dude, I hate hotel food, my diet is shit.” “Yeah, no I totally gotta cut back on sweets.”

Listen to any casual gym conversation or two guys in line at Five Guys. We talk about it, even as we definitely don’t talk about it. Heaven forbid we actually say:

I really need comfort. I feel on all the time. I don’t know how to give myself something sweet. So I literally choose sweets. I eat it alone because it makes me feel good. I feel so ashamed and weak. I’m not supposed to be this comforted by something as stupid as a rainbow sprinkled ice cream sandwich. But they look so good on the box picture.

It’s not just men either. No one likes to talk about it. Not the real ugly feeling truth of it. I’m glad there are books, articles, podcasts and spaces for people to talk about this problem or any other. In that vein, Mr. Rogers’s message was wonderfully simple: Anything human is mentionable, and anything mentionable is manageable. Let’s wind that back for me. Because I couldn’t mention my bullshit back then, it definitely wasn’t manageable, and therefore I was subhuman. And in 2000, that’s exactly how I felt with my creatine and candy bars. Subhuman.

It took me years, with lots of backslides, and lots of help, until I found my way to healing and recovery. I think it’s time for men to share our vulnerability, starting with the body. If I had opened up more, I could have spared myself a lot of years of pain and anguish. I don’t know if I could have saved James. James and I had stopped talking at age fourteen. There was no breakup or defined moment. It was almost like we knew each other so well that our brotherly, sincere friendship couldn’t endure the artifices required of adolescence. Little boys are open and affectionate with each other, and then adolescence socializes young men to equate masculinity with strength, competitiveness, and stoicism. Putting on airs, talking about girls, being cool. That wasn’t us. And we couldn’t keep reading comic books and playing He-Man for obvious reasons. So we just stopped calling. Stopped coming over every Saturday afternoon.

I never learned what James thought of all this. He took his own life at age forty. It cracked open a chasm that I didn’t know existed. There was grief, anguish, love, pain, and unobstructed reality. I saw the real me, and the real James. I saw that deep down, we were always there . . . always connected . . . little boys burning with desire, shaping our future selves. Tear-filled waves of clarity washed over me. I knew what to do. Armed with my recovery, I was now a true warrior—aka a responsible adult, able to show up and be there for others. I flew to the funeral, comforted his family, and talked with James’s contemporary friends, learning about the man I never knew. Then I returned home and started writing our stories.

James and I had always wanted to be heroes. Even if part of us had been shaped by He-Man and the popular culture, it also resonated with our primal need, which is why Mattel was so successful. We perhaps mistakenly believed that heroes were supposed to help the helpless. You know, other people—not knowing we were the broken ones. Maybe we should have first looked inward. Anne Lamott has said, “Help is the sunny side of control.” I now know that there’s no saving others; at least, no rescuing someone from an inner struggle. Every day, I want so badly for James to be alive. Or for many men who are alive—who may be struggling in silence—to find their full selves before it’s too late. This stuff matters, and it’s all connected: masculinity, mental health, body image, and food.

Today, I’m so grateful to no longer be silently screaming. I also have the powerrrrrrr . . . to say no to a snack once in a while. To put my gratitude into action, I’m ready to keep my shirt on—and put my voice out there—in case someone wants to tune in.

Share

Leave a comment

A practicing lawyer in Vermont, Justin Kolber is a recovered ripped dude, an athlete, activist, and author of Ripped, the first memoir about the dual extremes of muscle and food disorders. www.justinkolber.com

I broke out into a sweat that poured from every pore. Instantaneously. A flash flood of fight or flight. Respiration bushwhacked and severed. I knew I had to endure. The pain was stunningly acute yet everywhere at the same time. I then understood why two nurses had lingered in the room, each occupying a post on either side of the bed, awaiting a cue about which I was still clueless.

They had taken turns reassuring me that I was going to be just fine. I had thought it odd that each had taken a hand. Pat. Pat. Pat. Rub. Rub. Rub. Words of comfort. Words of consolation. Words of genuine care. They stood by the bed emitting empathy that left me curious yet curiously unconcerned. They stroked my arms, caressed my hands, smoothed my hair and still I had no idea what was about to transpire.

Transpirer, the French verb for to perspire or to sweat. Little did I know that something was about to transpire to cause me to sweat profusely. The good doctor hand-cranked an enormous screwdriver into my pelvic bone. I witnessed the effort it took to penetrate the intact status of my skeletal structure. The topical anesthesia did nothing to quell the quake of searing discomfort. You cannot deaden bone, I had been informed post procedure, only the muscle tissue connected to it. I had no idea why they didn’t put me under. Was it the assumption that Black people can withstand more pain than others?

The bone marrow biopsy would determine whether or not I had middle-age onset leukemia; my white blood cell count was dangerously low. He repeated the procedure to collect a second sample from the other side of the pelvis. I wondered if he was the Devil incarnate—like Josef Mengele or Dr. J. Marion Sims, the “father of modern gynecology” who experimented on enslaved African American women—I wondered if he got vicarious pleasure from inflicting such pain in order to study my case. What must it be like for any human being to be the subject of medical experimentation? Because it still goes on today. On prisoners and many who are held captive by economic and classist forces. Prescription drugs. Mind-altering amphetamines given to children to control their behavior. Clinical trials. A morphing monster like de facto slavery.

A great deal of managing pain is knowing or having some sense of how long it will persist. This is a vital training concept when it comes to exercising. You can control the amount of pain you put yourself through, weighing it against the benefits. Having some sense of duration presupposes seeing a light at the end of the tunnel.

I learned in my Lamaze classes that the average labor is six hours. My neighbor gave birth to her third child one month before I had my first and only. She was in labor for two hours. That was heartening. Knowing that I wouldn’t have to live the rest of my life in such pain, I was able to bear the detonation that racked my bone structure to its marrow, sixteen-and-a-half hours in and out of excruciating, bone-bending pain.

Even the pre-Roe v. Wade abortion I had in 1967 during my junior year at UC Berkeley didn’t prepare me for the pain of true childbirth. Nearly four months along, desperate and deathly afraid of “committing murder” (a fetus—viable or not outside the womb—was considered to be a “human being,” and therefore an abortion would’ve amounted to “infanticide”), my best friend at the time—the kind of “fixer” friend everyone needs—hooked me up with a resource. The off-duty nurse who performed the procedure couldn’t tell me how long it would take after she had sterilized me and inserted the long, rubber-like tube into my uterus. She had said that it would hurt no more than bad menstrual cramps, and I knew what that was like, having endured since the age of eleven excruciating menstrual pain every twenty-one to twenty-four days. I had already been convinced that being a woman was humanity’s greatest curse. The long journey into night and the next morning accompanied and assisted the greatest physical pain I’d experienced up till then.

Pain can be a good thing, signaling when something is wrong—like a fever or an abscess—even if the pain is psychological or psychosomatic, letting us know that something is wrong somewhere and we need to heal. And there is much evidence that the parasitic nature of a fetus is not necessarily a woman’s best friend.

I expected horrific pain in childbirth. My mother had often spoken of how each and every one of her six children had caused as much pain during childbirth as the one before. Her small frame and narrow hips seemed unfit for baby-making. I had also been frightened in my formative years into believing that woman was condemned to painful reproduction because Eve defied God’s command and fed Adam the apple of knowledge. Her act wasn’t recognized as the brilliant gesture it was toward the future of humanity, so, she had to pay for her egregious unveiling of human curiosity. As such she became the primordial scapegoat for sin and evil in the world. Woman. I am woman.

Original curiosity, a sin stolen from woman and given to man as a virtue. Curiosity is the basis of all science and inquiry, and therefore progress. As a transgressor, woman became the primordial scapegoat for sin and evil in the world. Punishment for such transgression was the infliction of pain…in childbirth. Scientifically, there is the hypothesis that we might have evolved too swiftly, nature eager to develop a large-brained organism to dominate over all other species, and the only way to do that was to create a creature with a brain as massive as it could be, yet still pass through the birth canal. This would, indeed, cause pain.

All punishment is pain. Not all pain is punishment. Pain could be an imperfection of evolution working things out on its own without a blueprint. Yet in the biblical way of thinking, pain is punishment. God wields the reins of pain. Punishment and pain. Synonymous. Pain is atonement. I expected pain, to atone for being a woman. The discomfort was so great I wanted never to give birth again! The physical assault remained in my body for weeks, eventually retreating to a quiet place. The emotional experience slowly became a memory, severed ultimately from its cause through the simple passage of time.

Pregnancy and childbirth are a wounding of the female body. The physical, emotional and psychic trauma is real. January 1, 1982, I courted a mild form of postpartum depression, wondering and questioning why I had brought an innocent and helpless being into the world, a world so foreign and dangerous as to require years of physical and intellectual growth for a human to be equipped to deal with the adversarial forces. My selfishness exacerbated an already hovering anxiety and fear of the unknown, the possible, the farfetched, the dreaded. It happened during one of the worst storm-driven winters, one that caused a neighbor’s house to slide down the hill and crash in the glen. A storm that created devastating mudslides and loss of property up the coast and down. It’s a miracle that the majority of us survive to adulthood, a space and place where most will be compelled to repeat the cycle of reproduction to answer the call of the survival of the species.

Just the act of being can cause excruciating pain.

I was standing on the ice having a chat with a fellow skater. Just as we learn to hold our pee or our poo, I had long internalized the technique of standing on ice without falling. To those unfamiliar with ice skating, that might seem like a “duh”. But if all forces of gravity aren’t balanced, down you will go. When speaking of playing the piano well my father used to always say, “In control out of control.” Shoulders loose and fluid, elbows bent with tension (the tension that should have been in my knees when standing on the ice), hands freely supported by wrists enabling the separate articulation of ten fingers. It’s a balancing act.

I relaxed too much on my heels. An awkward jabbing of my elbow into my side as I crashed to the ice. Each night for weeks, the pain of embattled ribs consistently took my breath away as I sought comfort during sleep. Primordial screams of distress accompanied one uncomfortable position after another. Homeopathic medicine proved to be a joke.

Developing sciatica is often an early sign of aging. A set of vertebrae subjected to the pull of gravity over time and the compacting of the spine and therefore a pinching of the nerves. The acupuncturist in the family law attorney’s office I worked for at the time asked me how much pain I could take. I wondered how I should know. I had given birth. I had had a bone marrow biopsy. I had fractured my ribs. My car had rolled over my ankle on its way down the driveway with my four-year-old inside in her car seat. I dislocated my shoulder when swinging with all my might at my older sister’s head and missing—she ducked—after she had taunted me more than I could bear. Twice—as a young girl and as a young mother—I had had a vehicle door slammed shut on my hand, causing me to pass out and an eventual shedding of badly assaulted fingernails. I had had an abortion, one that most people in my life still don’t know about to this day.

Pain sensation is relative. I believed I could take a lot of pain but my ex thought I was a wuss for going under (“passing out”) in the dentist’s chair.

“How much pain can you take?” the acupuncturist asked me.

“In spite of the painful experiences I’ve endured in my lifetime, I don’t have any way of really knowing,” I responded.

My abiding ailment is sciatica in my left buttock and leg. The discomfort often demands that I stand—whether at a concert or a sporting or theatrical event—sometimes for as long as thirty to forty-five minutes or until the pain lessens. Sitting isn’t an option during a flare-up. The good doctor took a needle from somewhere, placed my right hand in his, stuck the needle into the boney sinews on the back of my right hand and began to push-pivot it on an axis. The pain fell short of childbirth pain, bone marrow biopsy pain, and fractured rib pain, but pain it was. Sharp and concentrated. But not enough to concede to it. Maybe I’m just fucking stubborn. My mother always said that was my most salient characteristic. Stubbornness. I also never uttered a sound during childbirth, with my mother encouraging me to “go ahead and scream,” while my OBGYN and then-husband chatted about sports, eyes now and then glancing over at my draped knees.

“I screamed my head off with every last one of y’all. It’s okay,” my mother coaxed me.

I couldn’t.

The acupuncturist looked at me and said, “You have high tolerance for pain.”

Okay, there you go, I thought. Or maybe I’m just stubborn and find the outward expression of searing pain too undignified.

What I do know is, high tolerance or not, pain is an inevitability in life. I’ve been fortunate to have suffered so little compared to others. I’d finally learned how much I could endure in the way we all must: by doing it.

And, no, I didn’t have leukemia.

Share

Leave a comment

Brenda Usher-Carpino was born in San Antonio, Texas. She is African American, and she is a lesbian. Her family moved to Berkeley, California, when she was ten years old. She is a multi-genre creative writer. Brenda was married to a White cis male for over twenty-five years and they have one daughter. Much of her creative nonfiction stems from this relationship, in particular, a memoir she is currently crafting. Her play, Blood Types, kicked off this collaboration. Brenda graduated from Berkeley High School, then started college at U.C. Berkeley during the outbreak of the Free Speech Movement, and graduated in 1968 with a B.A. She also holds an M.A. (CSUH/EB), a PhD (Stanford), all in French Lang/Lit; and an MFA (Mills College), in that order. Since her earliest memory, Brenda has been drawn to the craft of writing as a form of personal expression, communication and creativity. She has also been a commercial model/actor, theatrical actor, classical vocalist, and world-class athlete. Brenda is divorced. She currently lives with her daughter and partner, and her 3½ year-old granddaughter

I first learned about the Halting Problem in my college computer science courses. Here it is as a question: Given any computer program, and an input to that program, can you mathematically determine whether or not that program will keep on running forever? The Halting Problem is considered unsolvable, even by the best of computers. There is no way to prove that something will end.

Here’s another question: Would my pain ever stop for good and if it did, how would I know? By the summer of 2020, I’d been in constant pain from chronic migraine disorder for nearly a year. I’d spent three weeks in the hospital trying to sort it out, to get back to my “normal life.” On the occasional day of lower pain levels, I would convince myself that I was cured. But as I lay in bed at night, I began to feel a ratchet handle turning in my head, and a sense of pressure growing out toward the edges. As my more recent treatments wore off, each headache grew deeper and stronger, like a thorny bush slowly sinking roots into my skull. So at night is when I remembered: There is no way to solve the Halting Problem. Even if I could one day go for longer periods without a headache, my pain was sure to haunt me in its absence just as it did in its presence.

My disability insurer had a different view of things. I worked for Facebook—rather, I had worked for Facebook, as a software engineer, before becoming constantly sensitive to screens and lights. Facebook was my first job after college, and I loved it. Though I had initially been intimidated as my team’s first female engineer, I was encouraged to ask questions, make mistakes, and “Be Bold” (one of Facebook’s primary mantras). Within three years, I had worked my way into a senior role, leading complicated, multi-team projects. Now, I was on disability, receiving partial pay through Facebook’s insurance company.

In the spring of 2020, right after COVID lockdowns began, the case manager at the insurance company had called to inform me that a bunch of neurologists who I didn’t know and who worked for her decided that I wasn’t sick enough to keep getting payments. Appealing this decision brought on a near constant stream of requests for clinical notes, daily activity logs, and treatment plan documentation. They were trying to flush me out, and I couldn’t hold up under the pressure. I began to question if I really was too sick to work, or if I was just being dramatic and pouty. Though I had been in constant, high-level pain for months, I began to question how much pain I was in, really.

The only way I could think of to escape the cycle of scrutiny and shame induced by the case manager was to bring my career at Facebook to an end. So in July, I packed my company-issued laptop into a FedEx box, then drove downtown to Facebook’s San Francisco office to gather my things from my desk. I didn’t even post the customary goodbye note on the employee-only Facebook site. Since everyone was working from home due to the pandemic, I knew that my last day would go virtually unnoticed, and I preferred it that way.

Other coworkers I’d known who’d left the company announced their departures with bittersweet pride, celebrating new jobs or their plans to travel the world. My exit had no hints of sweetness. I didn’t want to think about what my pain was forcing me to do for a second longer than necessary, and I definitely didn’t want to field comments and questions from coworkers about what was wrong with me, or if anything was wrong with me. Better to rip the Band-Aid off, I figured.

No one had been allowed into the Facebook office for four months. I needed special permission from my manager to gain access, needed to wear a mask, and my temperature was checked at the door with a laser thermometer. When I got to the 29th floor, where I used to sit, I noticed the tall office plants were brown and withered. I’d always thought they were fake. The kitchen shelves were still labeled with the names of all the free snacks—Ghirardelli chocolates, Sour Patch Kids, Pocky, Trident—but the shelves were empty, as were all the refrigerators.

I had trouble finding my desk, as my team had moved to a different part of the floor while I was out and the touchscreen maps of the office were frozen. I looked for the only thing I remembered having: a “Hakuna Matata” mug. My first manager had bought it for me, the same manager who took me, the team’s youngest recruit and first female engineer, under his wing. I found the mug and my desk around the corner from where they used to be, the mug filled with mold. I guess I’d forgotten to finish my coffee the day before I’d left, and I hadn't washed the mug because I anticipated coming into the office the next day. My migraines had started so suddenly, it was almost as if I'd been raptured.

I stuffed the contents of my desk into a backpack, then took a final lap around the floor. The entire month of July in San Francisco is usually shrouded in fog, but not that day. As I paced the perimeter of floor-to-ceiling windows, I could see the Bay Bridge arching against the sky, Alcatraz Island, and the sun making its way slowly toward the Pacific Ocean. The light bouncing off the polished concrete floors made my eyes squint and my head throb.

Though it had been nearly a year since I’d actually done any work for Facebook, I still felt like this was where I belonged. Until this point, I’d thought of my chronic migraine disorder as an inconvenient interruption to the career and life I would get back to one day soon. Even as I walked into the elevator for the last time, I kept telling myself it wouldn’t be the last time, couldn’t be the last time. Because if this was the end of my career in tech, what did I get an expensive degree for, and what was I supposed to do with my life? I had no interest in becoming one of those saint-like sick people whose larger-than-life photos were printed on inspirational billboards.

I’d recently started cognitive behavioral therapy for chronic pain, meaning I spent an hour each week with a therapist learning how to “accept my circumstances.” She had me doing meditations, breathing exercises, writing exercises, and a lot of talking about my migraines. “You don’t have a choice about your circumstances,” she always said, “but you can choose to accept them.”

What a load of garbage, I thought. Sure, acceptance was a choice, but it’s really not much of one, especially when it’s the only choice you have. I didn’t see how choosing to accept pain was supposed to make me feel like I had agency or power over my life. If I actually had control, my migraines would be gone, and I wouldn’t be holding a moldy mug. Pain may have forced me to quit my job for now, but I wouldn’t let it determine what I did and did not accept. I was convinced I’d solve the Halting Problem, somehow.

When I got home from the Facebook office on my last day, I unpacked the stuff from my desk. My teammates had collected swag for me throughout the past year including a backpack, a water bottle, and a jacket. The jacket looked nice and comfy, with a soft sherpa lining, but when I put it on, the bottom of the coat hung down to my knees. This is when I realized: There’s no way to prove the end of some things. There was no way to solve the Halting Problem of Pain. But for other things, like the life I was so desperate to return to before my disability, the end was as obvious as empty snack shelves, a moldy mug, and a jacket that will never, ever fit.

All that remained, then, was the problem of accepting it.

Share

Leave a comment

Natalie Mead is the author of the Substack Oops, My Brain, a collection of humorous essays and drawings about life with chronic pain and disability. She is currently writing a memoir about her experience with sudden-onset chronic migraine disorder and pursuing an MFA at Goucher College.

You would think that something like music could only be enjoyed by people who can hear it. For me, losing my hearing didn’t mean the death of music like I’d thought it would. Now, over three decades later, more possibilities are opening up to the Deaf and Hard-of-Hearing (HOH) to enjoy music. These options have helped many who have never heard music to experience it for the first time, as well as allow someone who’s lost their hearing have the chance to enjoy music again.

Technically, I do not count as “late-deafened,” because this usually applies to someone who has lost their hearing in their senior years. However, I consider myself late-deafened because I was thirteen when I became ill with meningitis and lost my hearing as a result. By then, I knew music well, so I can understand the desire a late-deafened person would feel in wanting to keep music in their lives somehow. Fortunately, there are ways a late-deafened person can keep their love for music alive, even if they can’t hear that music very well anymore, or at all.

After losing my hearing, I fell into a deep depression. It wasn’t just that I couldn’t hear anymore, but that my relationship with music wasn’t going to be the same.

When I was growing up, everyone in my family listened to music. There was music playing in our house every day. Sometimes  me and my six siblings sat out in the car to listen to the radio. We often had our favorite eight-track tapes, vinyl records, or cassettes playing either in the car, on our boomboxes, or on the stereo. Both of my parents loved music, so they often played their favorites—my dad, Frank Sinatra, and my mom, Creedence Clearwater Revival.

Because of this, we grew up listening to both old and new songs. It’s thanks to my dad that I came to love The Righteous Brothers and, thanks to my mom, I still remember some of the Elvis Presley songs she adored. Of course, I didn’t like all of the songs I heard growing up, but we all respected each other’s taste in music. My mom hated the song “Sister Christian” by Night Ranger, but my older sister loved it. My dad didn’t approve of Madonna’s hit “Papa Don’t Preach,” a song I liked to listen to, and neither of my parents liked Prince’s “Purple Rain,” but all of us kids loved it.

One musician we all loved, however, was Michael Jackson. We often had “Beat It” and “Billie Jean” playing in our house or in the car. My youngest sister, Millie, has the middle name “Jean,” so I started calling her “Millie Jean” after the song.

For the songs that alluded to sex, my older sister would often tell us younger kids they were about something else. (We found out the truth on our own later!)

So of course I was very upset when I could no longer enjoy music in the same way after I lost my hearing. I also couldn’t sing along or dance to the songs I loved—at least, not in the same way.

After I adjusted to wearing a hearing aid a few months after receiving it, I was able to listen to songs again, though the sensation was different. Wearing headphones and turning the volume up all the way helped me to faintly hear the musicians singing their songs. In this way I was able to actually hear Michael Bolton belting out the words to his song, “Love Is a Wonderful Thing.” I was so excited that I wrote to his fan club about it.

Singing while wearing headphones, however, wasn’t as easy.

I liked to sing along to songs, but while wearing headphones, that’s the only thing people will hear! There was one time I got so caught up in my singing that my brother-in-law came into the room and told me to keep it down. (Oops!)

The hearing aid helped me to faintly hear songs on TV as well. My siblings would play music videos and tell me the words everyone was singing. (This was before TV had closed captioning, and before MTV stopped playing music videos.) When it was allowed, they would play music on the stereo really loud, standing in front of me as they sang the songs so I knew the words. (My parents preferred that I read lips instead of using sign language to communicate.) This helped me a lot, too. Later, when I started dating the man who later became my husband, who was also deaf, I would tell him the words of songs being played while my siblings danced along to the music.

Several years after losing my hearing, I couldn’t wear my hearing aid anymore due to an allergic reaction to the material of the ear mold, so using it and headphones to help me “hear” music was no longer an option.

Now I couldn’t hear anything at all. Cue more depression.

However, I have since learned to enjoy songs in other ways, mostly the songs that I remember from before I lost my hearing.

I still sing, but only when there’s nobody around! I’ve spent many solo drives singing the songs I can still remember. Sadly, sometimes I forget how a particular song went, but reading the lyrics helps, and is another way for me to keep music in my life.

After my curiosity about songs I didn’t know got the better of me, I started looking up their lyrics online. Sometimes I’d catch a musical performance on TV and, if there was captioning for the song, I’d learn the lyrics that way.

Then I discovered a new approach.

My friend hosts musical podcast THC Outlaw Radio. When I first came across it, I was thrilled to discover that there was a transcript included. What I like about this radio show is that he tends to play songs from the old days, and some of them I had the good fortune to hear before I lost my hearing. But he often plays songs that I’m not familiar with. This is where the transcript is helpful, although the wording isn’t perfect. Sometimes I know the wording is wrong, but other times, I’m not so sure. Because I don’t know where a song begins or ends, it’s hard to tell if it’s the song lyrics still being displayed or are words being spoken by the host. It’s still a nice way of being aware of songs I wasn’t familiar with.

There are other ways I enjoy music as a Deaf person. After I bought my youngest child a guitar, he suggested I place my hand on it as he played. I did and was surprised at how strong the vibrations were. It wasn’t a normal “shaking” kind of vibration I felt as he played, but more of a musical kind of sensation. As though the music was playing and I felt the music through my fingertips. I’ve also done the same while he played piano.

Watching dance is another way for me to enjoy music. In a way, dance brings music to life, so we can “see” it in action. Some dances mimic the same kind of rhythm the music expresses, so this helps me learn what kind of music is being played. Dance is such a beautiful art; some dance moves, such as ballet and classic pop, are especially captivating and enjoyable to watch. The movements the dancers express through the music allow me to get an idea of how the music plays. Plus, watching expert dance moves allow me to appreciate their work.

With greater awareness and accessibility spreading for people with disabilities, people are trying to bring music back into the lives of those who are deaf, or introduce music to Deaf people who’ve never heard it. In one example, people fluent in American Sign Language (ASL) are signing the words of songs and sharing them online. I’ve seen a video of this in action, where two women not only signed but also showed emotional expressions on their faces and actions to go along with the words of “Bohemian Rhapsody” by Queen. But because sign language sentence structure is different from spoken English, the signs come out differently than what the lyrics actually contain.

Matt Maxey, who was born with profound hearing loss and is a lifelong hearing aid user, is the founder of DEAFinitely Dope, an organization making hip hop music accessible to the Deaf and Hard-of-Hearing. He explained to CNN that being HOH has not been a barrier in being able to enjoy music. He has also worked on learning the signs for song lyrics so he can interpret songs to the public. He volunteers at an ASL music camp and other ASL-centered music programs to bring more ASL-interpretated music to more people who struggle with enjoying it. .

Some public school classes work with students who are deaf or HOH to enable them to use instruments which create strong vibrations. One such specialized class is Michigan’s Inclusive Music Class for the Deaf and Hard of Hearing Community, which helps young children enjoy music through instruments such as drums, maracas, and tambourines.

Finally, there are special vests that turn the sound vibrations from music into physical sensations which the wearer can feel.

I have yet to make use of any of these methods to help me enjoy music, but I’m grateful they’re available. I continue to relish songs playing in my head, while also occasionally singing along. Perhaps one day I’ll be able to experience music in other ways as well. After all, music is for everyone, even for those of us who can’t hear it.

Share

Leave a comment

Dawn Colclasure is a Deaf writer in Oregon. She is a freelance writer, columnist, and book reviewer. She is the author and co-author of several books. Her work has appeared in newspapers, magazines, anthologies and websites. Her websites are dawnsbooks.com and dmcwriter.com. Her X is @dawnwilson325 and her Instagram is @dawn10325.

From a very young age, I knew I wanted to be a mom, and on June 10, 2017, my dream became a reality when I had my first baby at the age of 22. I was a single mom in college and ended up having to take on three jobs just to get by. But I did what I had to do because I loved being a mom.

Fast forward three years later when I met my now husband. His name is Bryan, and a little fun fact is we had dated once before in high school but went our separate ways for about 10 years. But now that he’d come back into my life, we both knew we didn’t want to be apart.

We married on March 20, 2022, and began the search to find our perfect home to settle down and raise a family. After months of searching, we finally found the house we wanted and moved in the weekend of Halloween.

After getting married, Bryan and I both agreed that once we moved into a house we would begin trying for a baby. It wasn’t but a week after moving in that I found out I was pregnant. We were so excited and my daughter, Adalie, who was five at the time, was thrilled to become a big sister! We called our close friends and family immediately to share the good news with them.

Like most couples, we wanted to wait until the first trimester was over before we announced to the rest of the world that we were expecting. Because the majority of miscarriages happen within the first three months of pregnancy, we wanted to make sure the risks of losing the baby were gone before we made the big announcement.

At 15 weeks we announce to our friends and family online that I’m expecting a little girl. We name her Miley Rose. Everything becomes more and more real as we buy a crib, strollers, baby clothes, diapers, and wipes, making the purchases a little bit here and there so it isn’t all one giant expense at the end.

We’ve already started to visualize the life we’re going to have once Miley is born. Adalie is ready to be the big sister who helps. February 20, 2023, is when my routine anatomy scan is scheduled. We make it a family trip to the doctor so we can all see little Miley’s growth.

Once at the clinic and back in the ultrasound room, we’re smiling and talking about what we see on the screen. But suddenly, the technician stops abruptly and says she needs to grab my doctor because she’s seen some “pretty serious things.” She walks out of the room and a knot grows in my throat.

What feels like forever is actually only a few minutes, and then my doctor walks through the door. Immediately, she states that she’s just looked over my scans and there’s no amniotic fluid surrounding Miley. Both of her kidneys seem to have formed abnormally and aren’t functioning. She measures at 15 weeks, a month behind from where she should be.

It's hard for me to grasp what’s being said to me so the first thing I think to ask is, “Is this my fault?” My doctor reassures me that these things can happen and nothing I did to caused it. She continues by saying there are more things she’s seen but wants to refer me over to a high-risk specialist for further testing. We’re sent over to the scheduling department to set up an appointment with a doctor at Tennessee Maternal Fetal Medicine Specialists.

February 24, 2024, just four days after my anatomy scan, I arrive at the high-risk clinic. This time it’s just me and Bryan. I go in with hopes that whatever may be wrong will have a solution. This is a planned for and wanted pregnancy, and I’m going to do whatever I need to so she can live.

I walk into another ultrasound room, but this time there’s no smiling or talking—just silence and the sound of my heart beating loudly. The technician finishes up the scan and says familiar words I’d heard just four days prior: “I need to grab the doctor.” A knot forms in my throat again, this time followed by silent tears.

The high-risk doctor comes into the room and immediately begins to ask me questions. “What was your first pregnancy like?” “Did you have any complications with that pregnancy?” No, it was completely normal, and Adalie came out healthy. She motions for the tech to start the ultrasound again and points at the TV, where we see Miley.

The next five minutes change my life forever. She confirms what my OBGYN told me: that there’s no amniotic fluid, neither of the kidneys are functioning, and Miley is measuring a month behind. But that isn’t all… how I wish it was.

The doctor continues to point at the screen and explain to us what we’re all looking at. Miley’s stomach and bladder haven’t formed correctly and aren’t functioning. They can’t find any lung development. Her heart only has two out of four working chambers.

The biggest anomaly of them all is her brain. She’s diagnosed with having semi-lobar holoprosencephaly (HPE). Her brain didn’t split completely down the middle and with this condition, only three percent of fetuses will survive to birth and most will die within the first year of life. It’s a fatal defect that, matched with everything else, makes Miley incompatible with life.

I feel my soul leave my body the moment she says those words. I’ve never felt disconnected from reality in that way before. I can see she’s talking to me, but I can’t hear her.

She steps out of the room, and I let out a cry that you only hear from a mother who’s just lost her child. The heartbreaking scream that no parent should ever have to experience. A few minutes go by, and she comes back into the room and asks if we have any questions for her. Through tears and sobbing, I ask her what are we supposed to do?

She says that I have two options moving forward: 1. I can continue the pregnancy, but I would be putting myself at risk of a miscarriage, stillbirth, or, if she were to survive birth, she would be put into hospice care immediately after to pass. Or 2. I can terminate the pregnancy, but due to Tennessee’s ban on abortion that was enacted just six months prior, I can’t terminate here. I would have to look out of state, and she can’t offer me any resources.

My husband then asks, “How long does she have?” The doctor says there’s no way to tell. She could pass tomorrow, in a week, or in a month. There’s no way for us to know, but the longer I stay pregnant, the worse Miley is going to get and the higher risk my health will become.

I know I can’t risk putting my life on the line with a five-year-old at home who needs her mom. We leave the clinic and head home to make the most impossible decision I’ve ever had to make. After talking with my husband and my mom, we decide that termination is the best route to protect my life and health.

Though Tennessee has a “life of the mother” exception outlined in the ban, and my doctor stated my life would become at risk if I chose to stay pregnant, I don’t qualify for the exception because I’m not sick enough. So my mom and I spend the following Monday calling clinics in five different states trying to find out which is the most affordable and can get me in the soonest.

The hardest part is finding a clinic that does 20-week abortions, and soon enough that I minimize my health risks. Since Roe v. Wade was overturned, many states across the country have implemented abortion bans, making the safe haven states weighed down with out-of-state patients.

Some clinics don’t do abortions after 15 or 18 weeks. Some allow medical exceptions, and some don’t. Some have waiting lists months out and I don’t know if I have 24 hours to play with. I eventually connect with a clinic in New York City that can get me in the following week, so now I have to figure out how I’m going to pay for it all.

My husband and I have just bought our house and started new jobs, so we’re still trying to get on our feet and are struggling financially. A random trip to New York isn’t in the budget, nor is paying over $1,000 for an abortion. So I start a GoFundMe and post about my situation on TikTok. Thankfully, I already have over 275k followers, and they donate to help me get the care I need.

Bryan and I fly to New York, and I enter the abortion clinic alone on March 7th. This day is supposed to just be pre-op testing and getting ready for the procedure the following day, so I spend my time enjoying the little moments I have left with Miley.

After a couple hours in the clinic, I’m finally called back to do an ultrasound, and I’m happy thinking I’m going to see Miley one last time before I let her go. I quickly notice this ultrasound room isn’t like others I’ve been in; there’s no TV on the wall to see the sonogram images.

I lay down and stare at the ceiling while the technician presses the wand on my lower belly. She immediately asks me when my last ultrasound was; I tell her it was about 10 days ago. She then says, “And there was a heartbeat then?”

I reply, “Yes, there was a heartbeat.” She gets quiet and puts her head down slightly, which prompts me to ask, “Is there no heartbeat?” She slowly shakes her head and says, “No, I’m so sorry.”

There it is again, that scream you only hear when a mother loses their child. I’m broken. Miley—my baby, my daughter—is already gone. My doctor was right; she wasn’t going to make it and now she’s gone.

The tech tells me she needs to tell the doctor what she saw and walks out of the room. Moments later I’m brought back to a different room where the surgeon waits. He informs me that there’s roughly a two-week window when a fetus dies. If the body doesn’t recognize it, you become at higher risk of infections, blood clots, or going septic. My body doesn’t know Miley is dead, and to minimize my risks, they suggest I have the abortion now.

One hour. It’s one hour from the moment I’m told Miley is gone until I’m going under anesthesia. I’m in a foreign city, around people I’ve never met, in a clinic I’ve never been in, without my husband, doctors, or family. I’m cold, alone, and heartbroken.

The abortion is successful, and I’m released out into the cold New York City streets to take an Uber back to the apartment we’re staying in. I bleed profusely for hours after the procedure and am in agonizing pain. I don’t know what hurts more, the surgery or my broken heart.

I know once I’m back home, I’m going to fight to make sure no other woman or young girl ever has to experience what my family and I did. I’ve made it my life’s mission to advocate and push for reproductive freedom and I won’t stop until it happens.

Every woman should be able to choose when and if she becomes a mother, and every woman should be able to have access to reproductive healthcare when and if she needs it. My name is Allie Phillips and this is my abortion story.

Share

Leave a comment

Allie Phillips is a 29-year-old wife, mother, sister and daughter. She grew up in a small town in Ashland City, Tennessee and obtained her bachelor’s degree in multimedia journalism from Middle Tennessee State University. Allie and her husband, Bryan, bought a home in Clarksville, Tennessee where they are raising their seven-year-old daughter, Adalie.

Allie is one of the women who was denied an abortion when she learned her pregnancy was not compatible and could cause health risks. She is also one of the plaintiffs in the lawsuit brought by the Center for Reproductive Rights, suing Tennessee for their abortion ban and asking for clarification on the law. Allie is also a candidate pursuing the Tennessee House seat in District 75.

To learn more about her campaign please visit – www.allie4tn.com

You can also find Allie on these social media platforms.

TikTok - .allie.phillips

Facebook – Allie Phillps for TN75

Instagram – allie4tn

Threads – allie4tn

Twitter (X) – allie4tn

When I was five, I stuck a balled-up piece of tape up my nose, because, I can only reason, I could. I remember the exasperated sigh of my teacher, an older woman who already disliked me for being too hyper (she suggested more than once to my mother that I should be medicated). I remember my pediatrician, a kindly man who always wore baggy, oddly patterned sweaters in neutral colors, preparing to suction the tape right out my nostril. Thankfully, my memory stops there.

When I was six, having not learned my lesson, I swallowed a rock just to see what would happen. It was a smooth stone, green and black, something I’d found on the floor of my first-grade classroom. I didn’t say anything until I got home and mentioned it to my mother. She seemed more flustered than concerned, but called the pediatrician just in case. He said the rock would likely just work its way out of my body but gave a list of symptoms to watch for in case it got stuck. My mother and my teacher worked together to observe my poop and watch for the missing stone. I had to alert an adult every time I went number two for inspection until the rock made its grand reappearance.

My keen interest in what was happening inside of me never went away. I loved learning about puberty. I’m still mesmerized by the way the colors of my bruises change, a living watercolor on my skin. The first time I got a staph infection (from a burn from a curling iron) and watched the red streaks grow across the flesh of my arm, the doctor drawing around the edges with a marker, I knew that this was serious, but all I could think about was wanting to go to bed so I could see how the blotches transformed in the morning. I’m aware of every mole and blemish, and pop blackheads and acne, even when it makes my face bleed. 

Maybe because of this fascination, I have always been acutely aware of what’s happening with my body. I’m sensitive to even the slightest changes. This has proven helpful over the years in that I can detect the early onset of certain illnesses like sinus infections and bronchitis. Once, I was in my immunologist’s office and I knew I was developing a sinus infection, feeling the familiar plug of fluid in my ears, always a telltale sign, along with face pain. I asked if he would write me a prescription for a Z-pack, save me a trip to my primary care doctor.

He looked at me over the rim of his round, wire-framed glasses. “How confident are you based on previous experience that this is the start of a sinus infection?”

“98.5%”

I left with a prescription.

This keen understanding of my body isn’t always a good thing. Sometimes, it’s also a nuisance, an obsession even. Not too long ago, I noticed for the first time that I have an indentation on the top right of my skull, about two inches long, like a dent or crevice. I convinced myself, am still convinced, that it developed suddenly, that there was no way that I hadn’t noticed it before. I googled possible causes and scared myself so much that I pointed it out to a doctor at an unrelated appointment. She was unimpressed. I still reach up and check it at least once a day, just in case.

I do not wholly believe that we can physically manifest things if we just think about them hard enough. But I do wonder if I was somehow prepared to have a sick body. Maybe I have always known that something was off inside of me. I recognized, somehow, that I needed to understand my body, would need to understand someday that my body was different. I don’t know if everything now was somewhere inside of me from the beginning, but there is something like comfort in thinking that my weird little fixations might have been a continuous lesson in equipping me for my present reality.

I’ve been in a battle with my body for a long time. I don’t like this analogy. I’ve never identified with the “pain warrior” thing. I don’t like to think of my body as an opponent. I am trying to work with what I have. Still, all of this does feel like a battle sometimes, like dragging a bag of bricks up a hill. Why do I have these bricks and why must I get them on top of a very steep hill? I cannot tell you. I just know this is what I must do and so I am doing it. The futility is not lost on me.

My journey uphill began in 2008, with all-over body aches and pains, tingling and numbness in my extremities, red rashes and hives from the sun, insomnia, and extreme fatigue, among other things. I saw a neurologist first and then a rheumatologist. The rheumatologist ran every test he could think of, looking for signs of inflammation in my body, inflammation I could feel was there, but the blood work came up negative. No lupus. No rheumatoid arthritis. No long list of any other possibilities. He was stumped and I was defeated.

He took my hands in his and said, “I have been doing this for a lot of years and you have the hands of someone who should be seeing a rheumatologist.”

This felt cryptic and obtuse. I wanted to say, “Help me then,” but I didn’t.

He added “possible fibromyalgia” to my chart. I cried all the way home. When I told a close friend, she responded with great confidence that fibromyalgia was just a diagnosis when the doctor didn’t know what else to do. It wasn’t real. This was the first time I remember feeling like I had to be guarded because people, even those close to me, weren’t always “on my side.” I think about her response every time I have a new conversation with someone about my health. I wear the wound in the way I enter every personal exchange: with a certain defensiveness, assuming the other is going to question or doubt me or my diagnosis. It’s not fair, or even necessary, but it’s unavoidable.

After my first sort-of diagnosis, I decided I would just be in pain and learn to deal with it. At the time, I attended the University of Colorado in Boulder. I started skipping morning classes because I couldn’t make myself get out of bed. I thought about talking to the disability office, but I didn’t know what to say. I didn’t know what was wrong with me and maybe a part of me thought I deserved it. After all, why couldn’t I just suck it up and get to class like everyone else?

I also suffered four unexplained stress fractures in my foot over the course of two years; a walking boot became an almost permanent accessory. Lugging around the weight of the boot added to my exhaustion. One day, a woman from Campus Crusaders asked me about my boot. I told her about my most recent fracture.

“Can I pray for you?” she asked.

“Sure,” I replied. It was a nice sentiment. What I didn’t understand was that she meant right then. She knelt and laid her hands on my injured extremity in the middle of the quad. She prayed for healing while I looked around anxiously at people watching as they passed.

Then, she stood up and asked, “How does it feel?”

“What?” I blinked.

“Your foot. Does it feel better? Did I heal it?”

I whispered, “I’m so sorry, no,” and hurried away, caught between the urge to laugh and cry.

I think about that moment often, years after my headache set in, a headache I have lived with every moment of every day, that has lasted for a decade with no relief, as doctor after doctor tries to connect the dots between my head pain and every other symptom—a single, complex puzzle where the pieces just won’t fit together no matter how hard you try. I wished, am still wishing, that my healing could have been that simple.

My headache has been my relentless companion, but that’s just part of it. All the pain and other symptoms, the many unknowns that came before my headache started, are still with me. Because I’ve never had just a headache. It’s a systemic betrayal. At this point, I am in pain literally everywhere, with almost every body system affected in some way.

I’m overwhelmed when I think about all the things that are working just in the second it takes me to take a deep breath without thinking about it. The body is a marvel of connected nerves and muscle, skin, and bone, all working together to give us life. We trust our bodies implicitly. We have to. Can you imagine constantly thinking about how it might just stop breathing or beating one day? That your brain might just decide to turn off? You can’t. You have to trust that it’s doing everything it’s supposed to be doing so you can go on living. That is, until you become sick or injured. What happens when the outside world has to intervene in your body’s functioning? That’s when you lose trust.

That’s when you start to realize that your body, though a marvelous, complex thing, is not infallible, that you are not infallible. You start to wonder what part will give out first. You realize, perhaps for the first time, that your time to be alive is finite. That you are going to die.

That is what it’s like to know that something is wrong deep inside of me. Is it a bomb that could detonate at any time? Maybe or maybe not. My doctors tell me there’s nothing life-threatening about any of my symptoms. My death isn’t imminent. But I know that things aren’t working the way they should. As my neurological symptoms worsen and start to affect my movement, my ability to walk or even stand for long periods of time, “life-threatening” seems more and more nebulous. I’m always aware that I can’t trust my body implicitly any longer, living in the liminal space of what will stop working next.

I have a list of diagnoses that explain various symptoms: we’ll call it a complex autoimmune neurological inflammatory syndrome. Perhaps my body just can’t fight things off because there’s something fundamentally wrong with my immune system. Maybe my body is just attacking itself in yet to be understood ways. It’s all very chicken or egg. But I need something to hold onto. Otherwise, I might float away, give in to the pain forever.

I’ve probably made this all sound so much worse than it is. For all intents and purposes, I’m “functioning.” I get out of bed on most days (oftentimes it’s even in the morning). I try to write as often as I can. I’ve worked on and off in part-time roles that give me enough flexibility to nap or rest. I go to church and visit with friends when I’m able. I stress this because so many others with similar symptoms are bedridden, are hurting so much. I don’t believe in the economy of suffering. There’s no value in assigning values to individual experiences, whether it’s to sympathize with someone else or to minimize my own suffering. I’m trying my damnedest not to let all of this get in the way of my living. I’m trying hard to make peace with my body, this strange and complex system of pieces of parts. I’m a living miracle, even on the worst pain days.

Share

Leave a comment

Stephanie Harper is the author of the award winning novel Wesley Yorstead Goes Outside, as well as a poetry collection entitled Sermon Series. She received her MFA in Creative Writing from Fairfield University. She’s written personal essays and articles for many publications online and in print. She currently lives in Littleton, CO.

I once confronted a woman who had parked in a disabled parking spot at a store. She looked non-disabled to me as she walked hurriedly toward her red sports car. I made an obnoxious remark about her having a fake parking permit. She ducked her head, avoiding eye contact, and sped off.

More likely, I was harassing someone with a so-called invisible disability. She might have been a person with MS having a “good” day or she might have had chronic pain. Given that she wasn’t carrying any grocery bags, I think she had probably been picking up a prescription, which she tucked into her purse before encountering me.

I mistakenly thought that disability was always visible and stable. It took my becoming disabled myself and then becoming my husband’s caregiver after he was paralyzed by a stroke to really understand how fluid and non-apparent disability can be. A colleague taught me that it makes more sense to call some disabilities “non-apparent” because they aren’t actually invisible, it’s just that we don’t interpret what we’re seeing as evidence of a disability.

I have low vision, a generic term used to describe vision impairments that cannot be corrected by glasses or surgery. In my case, my low vision is caused by a combination of nine different conditions, most of which probably wouldn’t be too serious on their own, but in combination, are tricky if not impossible to treat.

My disability may not be apparent to you, but it isn’t invisible. You might notice the dramatic prisms in my glasses that refract the edges of my face, or you might see me wearing an eyepatch. You might observe me hunched over my laptop, leaning much closer to the screen than most people do. You might learn that I haven’t driven since 2019 and assume, like many do, that I had too many DUIs. You may see me walking into a retaining wall or a parked car or a pile of boxes and think I am drunk. Or you might notice me being late for an event and not realize that although I left home early for my bus, being unable to find a crosswalk due to construction around my usual bus stop caused me to miss my bus. All you see is me being late and it doesn’t occur to you to attribute that to a disability, because I don’t use a white cane or a wheelchair or have a service dog.

You’ve certainly witnessed someone running out of spoons. Imagining spoons as a metaphor for units of energy comes from Christine Miserandino, who has lupus. Her 2003 essay, “The Spoon Theory,” explains that when someone has a chronic illness, they start each day with a limited number of spoons and everything they do means subtracting spoons from their initial bunch. They need to make choices throughout the day about how to use their spoons or risk running out before the day is done.

Most people can see without using any spoons, but not me. I’m constantly navigating double or blurred vision. My eyes don’t discern the difference between the gray sidewalk, the dark asphalt, a dark colored car, and a person in a dark jacket—it all blurs together into one dark mass to me. Every time I’m in a new space, I need to use a few spoons to figure out where the dangers are lurking—the poorly marked staircase, the column painted the same color as the wall beyond it, the screen door that appears to me to be an open doorway. My vision issues are made worse by poor lighting, so if it’s overcast out, I’m already down a spoon; if it starts raining, there goes another one. When the weather is iffy, I conserve spoons early in the day just in case.

As a professor and writer, I rely on my vision for reading and writing, but my vision is finicky. I may start the day down by two spoons because my vision is inexplicably blurry when I wake up. Sometimes I use spoons carelessly and pay the price later. Recently I read on my Kindle with my distance glasses on the bus because the bus was full and I was afraid I’d be jostled while changing into my reading glasses and if I drop them, I’m useless. This poor choice meant I couldn’t read for the first hour I was at work because my eyes were too strained.

The trickiest thing is that I never quite know how many spoons I started out with. I like to think I start with ten, but some days, despite doing my best to conserve spoons, I am suddenly out—my vision goes double or everything is blurry. I don’t know why I got fewer spoons those days, but once they’re gone, they’re gone. And then you may see me closing my eyes during a conversation and think I’m being rude—but I’m just trying to preserve enough vision to get me home on the bus.

Others misunderstand what they are seeing me do. They call me rude, lazy, entitled. They whisper about me “taking advantage” of accommodations I don’t “need” when I request high contrast handouts in meetings or “gaming the system” when I ask my employer to pay for a $35 desk lamp that will allow me to read in my office with less eye strain. I know the righteous indignation they feel—that’s what I felt when I harassed the woman in the parking lot.

My husband’s disability was all too visible, his wheelchair like a beacon. But somehow, his wheelchair became all that people noticed and he became invisible. When we were together, people spoke to me about him, as if he couldn’t speak for himself. Nobody harassed him, but nobody acknowledged him, either.

Watching my husband be ignored, I learned that invisibility is not the superpower we think it is. It is dehumanizing. People have asked me why I say I am proud of my disabled identity. Disability is not something to be ashamed of. I make my way through a world every day that doesn’t want me to exist, that doesn’t acknowledge me and tries to not notice me. That prefers to assume I am drunk, rude, or entitled rather than that I am disabled in ways they don’t immediately grasp.

If that’s not a superpower, I don’t know what is.

Share

Leave a comment

Elizabeth Kleinfeld is a writer and professor living in Denver, Colorado. She is writing a memoir about being her husband’s caregiver for the year before he died. Her essays about grief have been published in The Boston Globe, Herstry, Bright Flash Literary Review, and in an anthology about the 2020 pandemic. Her work has been nominated for the Pushcart Prize. She blogs about grief and disability at elizabethkleinfeld.com

.

Overnight snow powdered the streets on the first Thursday in December 2005, sugarcoating the sidewalk I trod to the hospital door for a scheduled medical test. My heart failure had advanced slowly over the past two years, marching me to this moment—a right heart catheterization to see if I needed a heart transplant.

Instrumental holiday music played in the background of the operating room as I reclined flat on my back on the metal table with sterile blue drapes pulled across my upper body, and I turned my head until my chin touched my left shoulder. This vulnerable position presented the jugular vein on the right side of my neck as the doctor threaded a catheter through an incision in my neck all the way down into my heart. There was no sedation for this procedure, just topical numbing at the incision site.

When he checked the pressures inside my heart, the doctor seemed surprised and asked his team to zero out and rerun the tests. When the second measurement yielded the same results, he came around the table and lifted the blue surgical drape covering my face.

“Tell me again what you’ve been doing?” he asked.

Looking up awkwardly from the corner of my eye so I didn’t move my neck, I said, “Well, Thanksgiving was last week, so I made a turkey for the family. I needed Jay to help me lift it in and out of the oven. The day before, I took Tim to the orthodontist to get his braces adjusted, and Saturday I drove Nik to the mall to get a new pair of shoes before he went back to college.”

The doctor shook his head in disbelief. “Most people in your condition are on bed rest.”

“I don’t have time for that,” I objected.

One of the nurses laughed. “Now that sounds like something a mother would say.”

The doctor smiled briefly behind his surgical mask, then became very serious. “You need to be admitted to the hospital. You need an urgent heart transplant.”

I squirmed on the hard table in the cold room, spotlighted by the harsh glare of the surgical lamps. “Can we do this after the holidays? I don’t want to mess up Christmas for the boys.”

He shook his head and caught my eye in a deadly serious stare. “You won’t live until Christmas.”

His words weren’t unexpected. I’d felt myself growing weaker by the day. My appetite had dwindled for the past two months, and I vomited when I ate more than a few bites. Deep down in the marrow of my bones, I knew I was dying. Still, I kept trying to play Let’s Make a Deal.

“My birthday is Tuesday,” I said, trying a different tactic. “How about I come back on Wednesday, and you can admit me then? I need to finish up my Christmas shopping, and I can have one last birthday dinner with my family.” I tried to fight the tears pooling in the corners of my eyes.

The doctor appeared to be choked up as well. He nodded. “Okay. Wednesday. Not a day later.”

Jay tried his best to transform my hospital room into a holiday wonderland, setting up a small Christmas tree and decorating my room with bright, cheerful lights and ornaments. Although the hospital was an hour drive from our home, he came to visit me several times a week, usually in the late evening. The nursing staff came to recognize him and never said anything when he arrived after visiting hours had officially ended.

Most weekends, he brought our younger son, Tim, who was thirteen, with him. Although I enjoyed seeing them both, I worried that the sight of the tubes and hoses hooked up to my body might be difficult for him, but Jay felt Tim should see and understand my condition.

Perhaps the avalanche of gifts that arrived at the house on a daily basis from my online shopping made them feel like they ought to get me something, because they kept asking me what I wanted for Christmas. I didn’t want to shatter their holiday by saying, “Don’t waste your money on buying stuff I won’t use because I might not live much longer.”

Instead, I asked for gifts I could enjoy in the moment. I asked Jay to bring my fluffy white terrier, Mallory, for a visit on Christmas Day. I asked Tim to play a song for me on his clarinet. He performed in the middle school band, and I wouldn’t be able to attend his Christmas recital this year, so I wanted him to hear him show off his musical prowess in my hospital room.

When Christmas Day came, Jay placed Mallory into an empty wheelchair at the hospital entrance and put a couple small gifts on the seat next to her, covering both with a white blanket that camouflaged her fur. She stayed quiet and still as they rolled her through the hallways and up the elevator. As Jay, Tim, and Mallory traversed the route to my room, the few employees they encountered just smiled and waved like they saw nothing out of the ordinary. The skeleton crew working on the holiday possessed zero concerns about visiting pets.

After three weeks in the hospital, I didn’t look or smell like the person Mallory knew. Multiple rounds of diuretics had flushed enough fluid out of my system to drop my weight below one hundred pounds. This, combined with my inability to eat much solid food, caused me to look gaunt and wasted. Dark circles rimmed my eyes, and my cheeks were hollow.

“Come here, Angel Bunny,” I coaxed Mallory, using her nickname.

Her ears perked up as she recognized my voice, and she cautiously crept from the foot of the bed until I held her in my arms. I buried my face in the soft fur of her neck and inhaled the sweet, slightly spicy smell. My fingers burrowed into the long, soft fur on her back. I felt renewed strength and hope flow through my body as I held her tightly and felt the steady beating of her little heart against my own.

“Dawn, are you ready?”

Tim had taken the clarinet out of its case and assembled it while I embraced Mallory.

“Yes, go ahead.”

Tim raised the instrument to his lips and played “What Child is This.” I’d requested this song for my Christmas present, and I listened raptly as he hit most of the correct notes while I held Mallory in my arms. As I lay in the hospital bed, surrounded by my family’s love, I felt I had received the best, and possibly last, Christmas gift of my life.

Share

Leave a comment

Dawn Levitt is a two-time heart transplant recipient, childhood/domestic abuse survivor, and an advocate for both humans and animals in recovery. She has published a personal essay with Insider.com, and her poetry has appeared in Wishbone Words and Blue Villa. She can usually be found walking her two terriers with her husband, attending a poetry open-mic, or eating tacos. Someday soon, she hopes to find herself in Paris. Follow her on X at 2HeartCore4U

I sat down at the kitchen table of the house my friend was subletting for the summer, the four of us gathered around over Chinese takeout. I shoved a giant bite of vegetable lo mein down my throat while they exchanged a nervous glance. In the bathroom down the hall, a pregnancy test sat developing on the counter. 

It was the summer of 2016. I’d graduated from Ohio University that spring and had just accepted my dream job. Starting in August, I’d be working at an elementary school as their wellness coordinator—helping out in the clinic, teaching health classes, and growing a garden, with the goal of improving health outcomes in Appalachian Ohio. I was more excited about this job than I’ve ever been about anything in my entire life. I use the term “job” loosely though. I had signed on to serve with AmeriCorps, which is considered volunteering. In lieu of hourly wages, you receive a meager living stipend and an education award at the end of your term. There is no health insurance, and no maternity leave. 

I laughed out loud when the fifteen minutes was up and the test officially confirmed that I was pregnant, sending my friends into a fit of laughter as well. I wasn’t struck with a sense of fear or panic because I knew that I could (and would) get an abortion. Maybe because I was young (twenty-two) and naive, or maybe because abortion still seemed acceptable and accessible at the time. This was just a neutral inconvenience that popped up as I attempted to navigate adulthood (poorly). I simply couldn’t entertain any fantasies of being a mother when I could barely figure out how to take care of myself.

I don’t remember how I told the guy—if it was a text or a phone call or in person. He’d moved back to his hometown but visited me a lot that summer. We had only just begun our romance spring semester and decided it wasn’t serious enough to pursue a long-distance relationship post-graduation, but we still communicated frequently. Once he found out I was pregnant, he dutifully Venmoed me for his half of the abortion, then became distant. Every few years he texts me on my birthday. I imagine that's the type of father he would’ve been too. 

I don’t remember how I told the guy, but I vividly remember my phone call to Planned Parenthood. Stepping out of the air-conditioned library and into the muggy summer heat, I stood in the grassy courtyard with my cell phone in hand, cicadas buzzing at full volume in the background. It was a historic summer: a mass emergence of a seventeen-year brood; it was difficult to hear over their incessant whir. I was nervous as I dialed, but did my best to sound very nonchalant and self-assured as I told the receptionist I’d like to schedule an abortion. The call was quick and the woman I spoke to was kind and helpful. We scheduled my first appointment for two weeks out. 

Abortion clinics are sparse in Ohio. According to the ACLU, in 1992 (the year I was conceived), Ohio had forty-five abortion clinics. Today, in 2023, there are only six Ohio clinics that will perform an abortion procedure, plus three additional clinics that can administer a medication abortion. With clinics already concentrated in the major cities, closures throughout the state over time has made care even more inaccessible.

Living in Southeastern Ohio at the time, the closet clinic was in Columbus, over an hour away. I called the clinic in my hometown of Cleveland, because even though it was much farther away, I could at least stay with my parents following the procedure.

My first appointment consisted of an interview where a nurse asked me a bunch of questions about whether anyone was forcing me to do this. She showed me pictures, talked about all of my options, and explained our state abortion laws. Ohio has a twenty-four-hour waiting period to get an abortion, so after this initial “education” appointment, I’d have to schedule another appointment that was at least twenty-four hours later. The nurse sighed after explaining all of this and I wondered if she was attempting to signal to me that she thought this process was absurd. Or maybe she was disappointed I still wanted to go through with it after her required talk, another carefully constructed roadblock designed by lawmakers to make accessing abortion more difficult than it already is.

Then the nurse did an ultrasound to see how far along I was. When we were finished, she handed me the photo and left the room. I swear I saw her shake her head as she exited. Maybe she really was mad at me for getting an abortion. But wait, why would she work at an abortion clinic? Maybe she thought it was ridiculous that she had to give me the ultrasound photo. I certainly thought so. I looked at it briefly out of curiosity. I felt a fleeting pang of sadness, and then tossed it in the trash. What was I supposed to do with it? Keep it? I imagine pasting it into a scrapbook and looking at it later. Awww! Remember that time you had unprotected sex?

After our education session, I was under the impression my abortion would be the following day, but the next available appointment wasn’t for another five days. Another frustrating barrier, as pregnancy and abortion are time sensitive. I’d be ten weeks along at that point, so the abortion pill was no longer an option. I’d have to have the procedure. But I planned to go alone, which meant I couldn’t be heavily sedated since I had to drive myself home afterward. 

When I got to the clinic for my abortion, I was given a strong dose of ibuprofen. Then I was ushered back into a room to change. It all happened very quickly. I placed my feet in the stirrups and held a nurse’s hand while the doctor vacuumed out my uterus. I closed my eyes and covered my face so they wouldn’t see me cry. My nurse gave my hand a gentle squeeze and reassured me that I was doing great.

It was incredibly painful for about five minutes, and I got all hot and sweaty and nauseous. Then it was over. I dressed myself and was escorted to a row of comfortable chairs where they gave me a heating pad, ginger ale, and crackers. I rested for maybe fifteen minutes, and then drove myself home. I was in and out in less than an hour.

I often think about how my perception of this whole situation has morphed over time. Leading up to my abortion, I was filled with fear and doubt about whether I was doing the “right” thing. Feeling confident in my decision didn’t necessarily make it any easier. But those uncomfortable feelings subsided once the procedure was complete. Afterward, I felt relieved. Empowered, even. I was able to do something that is notoriously hard to do, to make a decision for my future and feel confident about that choice. I have never once regretted it.

I spent a lot of time loudly advocating for reproductive justice after my abortion, but over time I got increasingly quiet. The world has been changing. It doesn’t feel safe to admit you support abortion, let alone admit that you’ve had one. This poisonous perception and rejection of abortion is contaminating our collective consciousness, creeping into our individual psyches.

Looking back at old journal entries detailing my abortion, I had nothing bad to say. I reflected positively on the whole experience. I wrote about how all of the staff at Planned Parenthood were welcoming, friendly and supportive. It’s only now that I wonder if that nurse actually hated me, or if she thought that I was a horrible person. Was she really even sighing or shaking her head? I realize that as time has gone on, my memories have been polluted with false projections born of shame.

People should be able to access abortion without fear or shame. Abortion providers and receivers—past, present, and future—deserve to be protected and supported, to have our stories lifted up, to shine a light on this current narrative that abortion is dark, shameful, or scary. Not to expose, but to illuminate. Someone you know has had an abortion; they’re just too afraid to tell you.

I fear that I will never be able to speak openly about my abortion, not because of judgment from my social circle, but because of literal judgment from the state. Will abortion one day be criminalized? What if things get so bad that women who have had abortions in the past are prosecuted and punished for it? It sounds dystopian, but it’s become a real fear for me. If I admit that I’ve had an abortion to the wrong person, could it come back to haunt me? Working in a rural area, will my career be jeopardized if I speak up for what I believe in?

But I have never regretted my abortion, and I hope to one day be able to share my story with more people in my life, in a society where abortion is normalized rather than stigmatized. With the passage of Issue 1 in Ohio this past November, I’m feeling optimistic.

Share

Leave a comment

Marissa G. is a licensed independent social worker who is passionate about advocating for social and environmental justice. She lives in Ohio where she enjoys reading, writing, hiking, and calling her local politicians. This is her first published piece. 

Dear reader, This essay contains sexual violence, child abuse, and medical trauma; please take care of yourself before reading.

I had a panic attack during my first pap smear. I wasn’t scared of nudity or needles or pain; it was some other wordless terror so deep in my body. I cried and shook so severely that I watched the color drain from the tiny doctor’s face. I was 21.

“Have you been abused?” she asked.

“No,” I replied. 

I had at least two more pap smears in the years following, and I panicked through all of them. For a few days before each one, I wouldn’t sleep, and the sensation of run, fight, or hide made it hard to do anything else. Even thinking about it now, I can feel the tingling in my calves, the drip drip drip of low-grade adrenaline telling me to get the hell out.

Almost five years after that first pap, I was raped by the descendant of whalers on Nantucket, where I was living. The terror I felt following the assault was similar to the panic attacks at the gynecologist. Still, I had an exact name for what happened that night. I could justify its horror. Most people I told responded with concern, support, disgust, and outrage. It was 2013; #MeToo had yet to give us such a universal language for sexual violence.

Shortly after, I left the island. I signed up for therapy and surrounded myself with people who were safe to talk to. Now, If I hear about an assault on the news, read it in a book, or even see it on TV, I am usually okay. My mind doesn’t break loose like it once did. I talk and write about the assault openly. There have been many who have given me a template for just that, such as Roxane Gay, in her book Hunger, or pop singer Kesha, when she freed herself from an abusive manager.

Recently I found even more nuance in my own experience after reading Kate Beaton’s graphic novel Ducks, where she describes the sexual violence she endured while working in the Alberta Tar Sands. The socio-economic and power dynamics around Beaton and the men in that camp echoed that night on the island.

Since that assault, though, I haven’t been able to return to a doctor for a pap smear. Even though I’ve found creative ways to get STI screenings, vaccines, medications, and even checkups, I’m unsure if I can ever convince myself to endure that procedure again. No matter how horrific that night was, it’s not the rape that keeps me from trying to get another pap smear. Instead, it was an experience with a doctor I had tried to rationalize away.

On summer break in middle school, my parents took me to our family pediatrician to get a sports physical for Girl Scout camp. I had had several for soccer and other things before this and walked in like normal. However, the pediatrician was someone I had never met before, and during her exam she molested me. After she did what she did, she informed me of how fat I was and that I needed to be careful about boys and drugs. 

I didn’t tell anyone. 

I kept quiet because I didn’t really understand that I was assaulted. I thought it must be part of the process now that I had hit puberty. I told myself that I was overreacting. I could be a gregarious kid. Conversely, I also preferred animals and alone time to other people. I was also known for bursting into tears when I got frustrated. I thought this terror was just another moment where I was, as the adults said, “being too sensitive.”

Nevertheless, I had a hard time leaving the house during middle school. When I came home from class I found safety in food, The Lord of the Rings, and the made-up stories I typed on the family computer. I thought it was preteen angst or something similar that most of my peers experienced. Looking back, my body knew what my mind wasn’t ready to.

In high school, I buried the memory. I thought my raised blood pressure and shaking hands when the doctor closed the door during exams had to do with needles or just being a “baby.”

Even as I write this, a part of me thinks, Well, maybe that doctor was just doing her job. The rest of me knows that this isn’t true.

Now, more than 20 years after that day in the pediatrician’s office with the model train on the ceiling, I can still hear the hum of the fluorescent light in that examination room, see the cabinets on the wall, and feel the pressing of my jeans on my thighs. Flashbacks are, in essence, cliché. Mine are annoying like the ones you see in movies, whole scenes and all. When they happen, the fear makes me forget where I am.

Conversely, the writer in me rolls her eyes, annoyed watching the same darn rerun for decades. The writer in me knows that Post Traumatic Stress Disorder can be like that guy who thinks he will be famous after one fiction writing class—grandiose, vapid, and lacking in creativity. The traumatized child me wants to believe the writer me, but she doesn’t yet. 

I also fill with jealousy when I think of how banal doctor visits are for others. Meanwhile, my heart rate skyrockets whenever anyone asks about my primary care physician. Even some of my most progressive friends stared at me, confused, when I asked them to stop talking about their latest trip to the gyno. “Want to hear about the funny thing that happened during my pap smear yesterday?” a friend said to cheer me up from some other catastrophe. I begged her not to. 

If I encounter a doctor scene in a book, I skip ahead, hoping I caught it before a flashback starts. It’s harder with TV shows or movies; the scenes about them usually play unannounced, and I’m caught helpless.

The only gynecological scene that’s not made me completely lose it was in an episode of the rural Canadian comedy Letterkenny. At the little town’s clinic, the men and women sit across from each other, waiting for checkups. Tanis, one of the female characters, describes in detail what a pap is like as the men in the room cling to each other in horror. The tone of the moment not only made me feel validated, I even stayed in my body. The victory was small but glorious. 

After mountains of therapy, I have a better understanding of what happened to me. What that doctor did is no longer the secret it was. It’s not an easy conversation, but every time I have it with someone, positive outcome or not, I’m taking care of my teenage self in a way she wasn’t. 

In the last few years, I’ve learned that I am one of many survivors of this kind of abuse. In 2018, more than 150 people testified against Larry Nassar, the former doctor for the women’s Olympic gymnastics team, who, as one AP article states, “molested athletes under the guise of medical treatment.” In 2022, the University of Michigan paid a $490 million settlement split between more than a thousand people who claim that they were sexually abused by Dr. Robert Anderson during exams. In his 2013 essay “Sliver of Sky,” nature writer Barry Lopez recounts years of abuse by Dr. Harry Shier, a family friend.

Early in 2022, I read a Twitter post by one of my favorite drag queens, Willow Pill. She described her journey with gender and her complicated relationship with her body due to a genetic condition called cystinosis. She’d just had surgery on her face to make it more feminine and wrote, “Any further medicalization of my body scares me because of my medical PTSD.”

I hated that this had happened to other people too, but their stories were a life raft in the sea of silence I didn’t know I was swimming in.

When I started this essay, I wanted to write about how there should be more trigger warnings for medical content. I was tired of having my day ruined by things on my screen I didn’t sign up for. Content notices, though, are only a small part of a much bigger picture, one that includes teaching us that consent is essential in many more contexts than just with sexual partners, and honoring those who speak out even when it’s painful.

I wonder what it would be like if honoring bodily autonomy was more commonplace.st If children like me were taught it’s okay to say no? Who would I have been if I believed I deserved better? 

Share

Leave a comment

Gretchen Lida is an essayist, teacher, and an equestrian. Her work has appeared in the Washington Post, the Rumpus, The Los Angeles Review of Books, and many other publications. She is also a contributing writer to Horse Network and The Washington Independent Review of Books. She lives in Chicago and is currently working on her first book.

It’s 6:30 a.m., three days after I got one hundred units of Botox injected into my bladder by my urogynecologist, and I cannot pee. My bladder is paralyzed. I’m running late to work and I'm panicking. I tilt my pelvis. I rub my lower back. I do a “reverse Kegel” or whatever the fuck that is. I bear down. Nothing works. I grab a handful of the catheters from the paper bag that the nurse gave me with the advice, “Don’t worry, you probably won’t need these,” and leave for work.

At work, I realize that I need lubricant. You cannot self-catheterize without lubricant. I take a short break and jog to a CVS a few blocks away and buy a tube of lube and some baby wipes. I return to work with a sense of grim determination. In the gender neutral handicap restroom, I self-catheterize for the first time, clumsily.

Washing my hands, I catch my reflection in the mirror and notice that my pupils are dilated. I can’t bring myself to eat lunch.

I cannot pee and my interstitial cystitis, the disease which led me to get Botox injected into my bladder, is worse than it has ever been in the five years since I was first diagnosed. Interstitial cystitis is also known as painful bladder syndrome or painful urethra syndrome, but rarely referred to as such, and it feels like the name “interstitial cystitis” is a way to politely tiptoe around a chronic pain disorder that affects a part of the body no one wants to talk about. I'm in the flare of all flares. I have a constant, urgent, and often burning need to urinate. I can’t sit. I haven’t been sleeping. I keep my poker face at work as long as possible and then call my dad from the parking lot, crying, and tell him that I cannot pee, that I feel terrible, and that I will have to pee via a small plastic tube for the next several months. I tell him that I sort of want to kill myself, but I know things will get better. Weirdly, he gets it.

It’s just before lunch on a Friday, six weeks after I got one hundred units of Botox injected into my bladder, and I’m taking a mandatory HR training at my desk. A line that defines disability to include anyone with impaired bladder or bowel function makes me feel exposed somehow. I look fine, but I'm a house of cards. I’m walking around with a gross, sad secret. I'm the Catheter Lady.

It’s a late and very hot Sunday afternoon in the San Fernando Valley, three months after I got one hundred units of Botox injected into my bladder, and I make my first ever trip to a marijuana dispensary. I’m hunting for THC vaginal suppositories, which, according to a Facebook thread I found, help relax tight pelvic floor muscles. I have to loudly ask the clerk for “vaginal suppositories.” The suppositories do not help me.

It's 1 p.m. on a Tuesday, a little over five months after I got one hundred units of Botox injected into my bladder, and I have a urodynamics test. My doctor fills my bladder with a saline solution to measure my bladder capacity. There is a special catheter in my urethra and another in my vagina. My feet are in stirrups, my head is propped up by a towel, and wires are taped to my legs. I have become a science experiment. Once my bladder is full, my doctor and the nurse ask me to empty my bladder. I tell them I won’t be able to. I’m being asked to pee in a small medical bucket and I can’t and no one believes me. Someday, I tell myself, this will be funny.

It’s around 4 p.m. on a Wednesday, a little over seven months since I, extremely regrettably, got one hundred units of Botox injected into my bladder and I’m meeting with a new pelvic floor physical therapist. The first one I saw decided to do some extremely off-putting energy healing after I told her my symptoms flared up after a previous appointment. I sat in a fetal position as a woman hovered her hands six inches away from my lower back and said that the pain and constant urinary urgency I’m dealing with originate in my sacrum. This particular physical therapist made me take a bobby pin out of my hair. I guess bobby pins have bad vibes. My co-pay for each of these visits was ninety-five dollars.

The new physical therapist seems normal. She is empathetic. But she can also immediately tell—despite my doctor theorizing that my tight pelvic floor, and not the Botox that he's injected, is preventing me from emptying my bladder—that self-catheterizing is my biggest problem. The muscles around my urethra are in a prolonged spasm. The recurring UTI I’ve been dealing with for over a month is not helping. I feel, psychologically and perhaps physically, better after PT.

It is around 9 p.m., a little over eight months since I, making one of the biggest mistakes of my life, got one hundred units of Botox injected into my bladder and I shock myself by being able to urinate a little on my own. I'm elated. My fiancé is psyched. I dance around the living room singing “I'm peeing on my own” to the tune of Robyn’s “Dancing On My Own.” I assume/hope/pray that this signifies a speedy end to the recurring deliveries of catheters and tiny packets of lube to my apartment every month.

It does not. The Botox is wearing off so slowly that I feel like a paleontologist watching the change between prehistoric eons. The “congratulations on your 1-year anniversary” email from the medical supply company from which I’ve been ordering my catheters makes me incredibly angry.

I come home from a frustrating day in tears and tell my fiancé that I feel like I’m carrying around an invisible bowling ball. That I'm always uncomfortable or in pain, that something is wrong with me, and that I can’t tell anyone. That I’m not a very nice person right now. That my fuse is shorter than I’d like it to be. That I’m so angry. I’m so sad and I’m so angry.

I wait for the Botox to wear off. I wait.

Share

Leave a comment

Jordan Sara Kurtzman is a writer and comedian living in Los Angeles. She’s been a second-rounder in the Austin Film Festival Screenplay and Teleplay Contest as well as a PAGE Awards quarter finalist. She’s also a writer and performer at The Pack Theater.