Browsing Tag

sick

Guest Posts, healing, Illness

I Got Sick

September 3, 2020
sick

By Dakota Antelman

I had a favorite phrase when I was young.

“My body hates me.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

***

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

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

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

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

“That’s something,” she said.

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

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

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

***

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

I felt everything.

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

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

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

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

***

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I got sick.

Then I got help.

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

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

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

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cancer, Grief, Guest Posts

Scared

May 25, 2015

beauty-hunting-jen-logo-black1-300x88By Trish Cook

“Scared,” my dad croaks, pointing painstakingly at me, then my brother, then my mom.

It’s an understatement.

We’ve summoned his personal physician to our home today to hopefully deny, but probably confirm, our suspicions: The cancer has gone to his brain.

We hold our collective breath as the doctor asks my father, “Who is the President of the United States?”

An underwater, foggy pause. Finally, Dad replies, “Reagan.”

The three healthy people in the room exhale a sigh of relief. He got it right! This must count for something, we think. A small shred of hope still inhabits the homey little den we’re all crowded into. Our prayers, crossed fingers, and wishes on stars and eyelashes might yet magically release him from cancer’s insidious clutches.

My dad is only fifty-two on this day. I am twenty-four, though, so both he and the non-descript middle-aged male doctor seem something close to old to me. Not old old, sitting in a rocking chair waiting to die old, but old enough to have really lived, to have really made it count. I hold on to this thought, stroke it for comfort inside my head like a beloved baby blanket. Even if Dad doesn’t beat this thing in the end, at least he made it far enough to look back and know he lived a long and satisfying life.

Today, at fifty, this notion seems ridiculous. My father was not old then, just as I am not old now. Not nearly old enough to die willingly, anyway, or to feel as though everything that needed accomplishing had been accomplished. Continue Reading…

cancer, Guest Posts

This Is What Cancer Does.

March 6, 2015

beauty-hunting-jen-logo-black1-300x88By Nancy Conyers.

This is what cancer does: it makes your body unknown to you, an alient presence dragging 50lb weights on each ankle and around your neck. You are exhausted, so exhausted physically and mentally your brain can’t send proper signals to get your unresponsive limbs moving. One time, for three days, you couldn’t even wash your face because it was too much effort to lift your arms. When you couldn’t stand your own smell anymore you tried to take a shower. It wasn’t your own body odor you were smelling, it was the drugs you’d been infused with: TCHP, Taxotere, Carboplatin, Herceptin, Perjeta. They were seeping through your skin, through every orifice and the metallic medicinal smell was making you as nauseous as the drugs were. You turned on the shower but the weight of the water pushed you against the shower wall and you struggled to turn the water off. You sat soaking wet on the side of the bathtub until your spouse came to check on you.

“Honey, are you ok?” you heard her ask from the bedroom. When you didn’t answer she rushed in to the bathroom, saw the puddles of water at your feet, grabbed a towel and started drying you off. “You scared me when you didn’t answer,” she told you as she was drying your back. You knew she meant she thought you were dead.

You now spend hours on the internet trying to get more information about cancer, how you could have gotten it, what your chances are, but once you start reading you close your laptop because you don’t really want to know that the survival rate is only 70% five years later for your late Stage 3A aggressive breast cancer. What about 10 years or 20 years you ask, but nobody has those statistics. You don’t want to think in terms of surviving only five years. You don’t want to think that there is a 30% chance you could be dead before the five years are up. You look around your house in Santa Fe, the one you and your spouse bought for retirement that you don’t live in full time yet and you know that in five years she may not be ready to stop working. You want time here together when she retires, time to build a roof deck so you can sit and watch the sun set on the Sangre de Christos every night.

You’ve read all the other statistics about who gets breast cancer, the two most likely being you’re a woman and you’re aging. 77% of the women diagnosed with breast cancer are over age 50. Since when did age 50 mean you were aging, you wonder. Women who’ve never had children, who start their menses before age 12, who took oral contraceptives and who do hormone replacement therapy are at risk. Women who are overweight, drink excessive amounts of alcohol, who are physically inactive and exposed to environmental pollutants are at risk. You fit some of the categories but you never took hormone replacement therapy, you don’t drink excessive amounts of alcohol and even though you are overweight you are physically active. Back when you thought you were straight, you took birth control pills for five years. You’ve never smoked. Ever. In your mind only people who smoke get cancer, people who won’t or can’t stop smoking and take drags on their cigarettes from a hole in their neck while they’re hooked up to oxygen.

Cancer. This cannot be your life. This is not your life. This will not be your life. You do not want to understand what these medical terms mean, do not want to become comfortable with spouting out breast cancer vocabulary and treatment options, do not want to know that once your treatments are over the cancer could come back. Once this is all over even if you’re told you are cancer free, it’s only for the moment, that place in time, that snapshot, not forever. You want forever. Continue Reading…

Guest Posts, Inspiration, Sex

Sex & Sickly Girl.

June 11, 2014

By Litsa Dremousis.

I stood nude in my doorway and laughed.

“Thomas! Come here!” I called to my dog, a willful Pomeranian who’d jetted into my building’s hallway on the heels of my new boyfriend Greg. So much for my sultry goodbye. Greg burst out laughing, too, scooped up the wriggling Thomas and set him behind my door jam, where I nudged him back with the red lacquered toes of my left foot. Still giggling, Greg and I kissed again, once more wrapping up a delightfully carnal twenty-four hours in which we only stopped for Thai food and cherry-almond pie.

I shut the door, hobbled to my bedroom and collapsed on my disheveled bed. The surrounding terrain resembled a Motley Crue video, with all manner of sex detritus strewn about, minus the drugs and hairspray. Thomas yelped and looked at me with pleading eyes, so I sat up, scooped him onto Greg’s pillow, then resumed lying flat, as joyful as I was immobile.

Greg had arrived at noon the previous day, ostensibly to see a documentary playing up the hill. It was our fourth date and when he kissed me hello as I reached for my purse, we kept kissing and soon were horizontal and writhing, despite Thomas’ unbroken barks of protest. I kept apologizing that my dog was losing his mind and Greg kept assuring me he didn’t care. And based on his performance, I believed him.

Our first time was free from the awkwardness that often hovers over such encounters, as each of you figures out who likes what and where and how. Greg and I simply clicked: we made wonderful discoveries, but felt like we’d known each other forever. He had the wisdom of an older man, but the parts of a younger one and while this wasn’t why I soon fell in love with him, it certainly didn’t hurt.

Thomas fell asleep and I wrapped the bedspread over myself and basked in post-coital giddiness. I was happy. Pure, undiluted happy. Greg was brilliant, compassionate, hilarious, had read my work before we’d met and was as handsome with his glasses off as he was with them on. (I have a thing for glasses.) My longtime partner had died four years prior and it’d taken me a long time to feel like a sexual human again, as opposed to a decaying lump of seaweed. The man I’d dated previously had helped me navigate this complex transition, but with Greg, I was starting off wholly libidinous and feeling like myself. My life was good. Great, even.

Then I tried to stand up.

I assumed, perhaps naively or maybe prematurely, that because my sex drive was fully recharged and because Greg already knew I have both a dead partner and Myalgic Encephalomyelitis, a chronic, incurable, degenerative illness that presents similarly to M.S., our sex life would be relatively uncomplicated. Which sounds counterintuitive, but all the weird stuff I can’t control was already out in the open and Greg still pursued me. He shared tales of his past to level the playing field, as such, and I still very much wanted him. I’m 47 and he’s 51 and as he sagely noted, it’d be so much stranger if neither of us had shades of color to our past. If you make it to middle age without some deep wounds but, also, a greater perspective and richer appreciation for joy, well, you’ve likely padded yourself in bubble wrap or just haven’t been paying attention.

So, traveling along merrily, I didn’t see the upcoming speed-bump. We’re engaged now, and our sex life largely consists of perpetual lust, food and dog appeasement. With no disrespect to our previous loves, Greg and I sometimes hold each other, laugh and ask, “Where the hell *were* you?” There’s an old Greek adage, “The pot rolled down the hill and found its lid” and we’ve heard it from my family a dozen or so times now. I’m the master of complicated relationships, but this one is as easy as it is loving. Unfortunately, though, no amount of love cures an incurable illness. And over time, any amount of illness will impact your sex life.

At first, the effects weren’t evident.

Greg and I reveled in each other’s minds and wit and this prompted still more disrobing. We remained devoted to our respective jobs–each of us is fortunate to love what we do–but quickly adjusted our schedules to see each other as much as possible.

And that’s when the speed-bump rose, forcing me to slow down. Because adhering to deadlines for two books and several essays, all while constantly seeing the love of your life and boffing him with vigor will, it turns out, lead to some immuno mayhem. The ceaseless activity and lack of sleep, i.e. frequent components of a super-fun new relationship, quickly led to less fun things like falling and fevers and secondary infections. (No, not those kind.) Nausea, chronic pain and near paralytic levels of exhaustion, all hallmarks of Myalgic Encephalomyelitis, began kicking the crap out of me more so than is usual.

I’ve had M.E. for 23 years and excel at symptom management. But I’ve grown sicker since the last time I spent this much time with a partner, and Greg is now my fiance, no less. I genuinely like partaking in his world. So, despite his culinary wizardry, I’m learning to make dishes with more than four ingredients and figuring out how to use his NASA-level coffee maker. I like watching him teach at the University of Washington or listening to him explain the finer points of his photography equipment. Not because Greg is pressuring me. Far from it. Indeed, he’s incredibly understanding that I do some of the aforementioned while lying flat on his couch. And he has immersed himself in my worlds, spending much time at literary events and with my friends and family. Basically, to poach Cole Porter, we get a kick out of each other.

The unavoidable fact, however, is that for the first time in my life, and much to my chagrin and occasional humiliation, there are brief times I’m simply too ill for sex. And then I feel like an idiot. Because I love Greg and we consistently have great sex. Saying no, however temporarily, is like declining the steak and ice cream right there on the table before me.

He and I can approach this in the touchy-feeliest way possible, but barring a fetish, there’s nothing sexy about illness. I have friends who don’t like to shag when they have a cold, for god’s sake. If I waited ‘til I felt well to have sex, I’d die celibate. So, I’m always ill when I have sex; it’s just a question of degree. Mildly symptomatic? “Fire down below!” Extremely symptomatic? “Can we wait ‘til morning, honey? In the meantime, can I have a shoulder rub because it kind of hurts to breathe?”

Greg loves me and has wryly noted it won’t fall off if he has to wait a few hours. He has lead the way in figuring out new and creative ways to make gravity work for us. In the best way, our bed has become a sort of laboratory. And because all sexual experimentation, sick or well, requires trust and communication, in a roundabout way, my illness has brought us even closer. I’m not fabricating a silver lining, but that is pretty wonderful. Especially as we plan to spend the rest of our lives together and all.

Of course, should there be a cure, start a pizza fund for us and please donate generously because we’re leaving the house again never.

 Litsa Dremousis' work appears in The Believer, Esquire, Hobart, Jezebel, McSweeney's, MSN, Nerve, New York Magazine, The Onion's A.V. Club, Salon, Slate, The Weeklings, on KUOW, NPR, and in sundry other venues. She’s completing her first novel, assuming it doesn't complete her first. On Twitter: @LitsaDremousis. Photo: Trent Hill


Litsa Dremousis’ work appears in The Believer, Esquire, Hobart, Jezebel, McSweeney’s, MSN, Nerve, New York Magazine, The Onion’s A.V. Club, Salon, Slate, The Weeklings, on KUOW, NPR, and in sundry other venues. She’s completing her first novel, assuming it doesn’t complete her first. On Twitter: @LitsaDremousis.
Photo credit: Trent Hill

 

Jen Pastiloff is the founder of The Manifest-Station. Join her in Tuscany for her annual Manifestation Retreat. Click the Tuscan hills above!

Jen Pastiloff is the founder of The Manifest-Station. Join her in Tuscany for her annual Manifestation Retreat. Click the Tuscan hills above!

Join Jen Pastiloff, the founder of The Manifest-Station, in The Berkshires of Western Massachusetts in Feb of 2015 for a weekend on being human. It involves writing and some yoga. In a word: it's magical.

Join Jen Pastiloff, the founder of The Manifest-Station, in The Berkshires of Western Massachusetts in Feb of 2015 for a weekend on being human. It involves writing and some yoga. In a word: it’s magical.