Recipient of the Mary Kinzie Prize for Creative Nonfiction, May 2024

My older sister is ordering our drinks at Iconica cafe in Northampton, Massachusetts. You order on the ground level, but we like to sit in the loft. The wallpaper is a map of the world up there, framing the squishy amber couches and deep mahogany floors with electric green and bright cerulean. 

“What do you want with your matcha?” my sister asks, turning to me. I point at the last slice of gluten free chai tea cake sitting in a glass display case. She adds it to the order and pays with her card. I wear a giddy smile, one that comes with knowing your big sister just got you the last slice of delicious gluten free cake. She takes the buzzer and heads to the loft stairs.

I’m visiting my sister for the weekend. It’s my freshman year of college at Northwestern University, and I’m struggling a bit. My mom figured it would be good for me to hang out with my sister at Smith College. She’s a junior with a great group of friends. “You need to see the fun parts of college,” my mom told me over the phone last week. 

I follow my sister’s footsteps carefully as she scales the stairs, focused on my breathing: in and out. I usually walk up five steps and then pause to take a deep breath before continuing. Right now, I’m following my sister’s sparkly teal jelly sandals, which take no breaks. I’m winded when I plop down in the wooden chair.

“I feel like before, this table had a chess board, like, embedded in it,” I say. The only other time I’ve been to Iconica was when we moved my sister into college during my junior year of high school. So much has happened since then. So much has changed.

“Yeah, maybe,” my sister replies. “They remodeled.”

“I feel like I remember ordering a vegan lemon and raspberry cake.” My sister agrees. I feel a tiny spurt of pride. These moments don’t happen very often; my memory is hazier than hers. Well, everyone’s memory is hazier than hers. My parents and I joke that she’s the Paulsen Family Encyclopedia. Whenever you need the details of some moment in our family’s history, my sister can give them to you — and recite exactly what outfit she was wearing while it happened. 

Our pager buzzes to let us know our food and drinks are ready. 

“I’ll go get it,” my sister says, popping up.  

“When you’re down there, can you get me a waterrrr?” I ask sheepishly. 

“Yeah,” she replies, and then she’s gone. My whole life, I was the Healthy Sister: doing extra chores, fetching her phone from across the room, and running up and down the stairs at our house in suburbia for her because she was the chronically ill child. Not me. I could scale the flight of stairs at our home in seconds, no problem. Now, I can barely make it up to the loft at Iconica without busting a lung. I feel an ache in my chest; it feels a lot like love. But there’s also a siren blaring in my mind; it screams this isn’t how it’s supposed to be.

Discomfort takes many forms, such as physically struggling up a flight of stairs. It can also be psychological, like an acute sense that the world has turned upside down, and you are now hanging like a bat from the ceiling as your sister pops up the stairs with a tray of tea and cake. 

Oxford language defines comfort as “a state of physical ease and freedom from pain or constraint,” while discomfort is defined as “slight pain.” These definitions imply that you can’t have comfort without discomfort and that discomfort is smaller and less severe than pain. Like a headache that isn’t terrible enough to warrant a sick day but still makes you hate life. Small pains make big waves. 

Whenever I woke up grumpy, my mom always asked, “Honey, are you hurting? Let’s start with making your body feel better.” My life has become one long challenge of making my body feel better: doctor appointments, specialists, exercises, and medicines. I knew when I got diagnosed with my chronic illness that’s what it would mean. There were no surprises because I saw my sister go through it first.

My sister was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) her senior year of high school. POTS is a condition that affects the autonomic nervous system (ANS), which controls all involuntary bodily functions such as breathing, heart rate, sweating, pupil dilation, and digestion. It functions as your body’s autopilot, taking care of all the things you need to stay alive so you can be focused on the world around you instead. When you have POTS, your ANS is dysregulated, causing all kinds of problems. Symptoms range case by case but can include migraines, fainting spells, brain fog, exercise intolerance, nerve pain, — the list goes on. The symptoms often appear suddenly in “flares” that can last for days. One symptom that is always present is tachycardia, which is defined as an abnormally rapid heart rate. Measuring the change in heart rate when you go from lying to sitting to standing, is how you get diagnosed with POTS. It’s the one common denominator when someone’s ANS is dysregulated. 

Let’s take a look at John Smith, a healthy high school student who’s on the JV soccer team. Lying down his heart rate is 60 bpm, sitting it’s 72 bpm and standing it’s 75 bpm. Normal, healthy. Now, take Jane Doe, who is known by all as an extremely lazy girl who hates running and suffers from chronic migraines. Jane’s heart rate might look something like this: lying down 64 bpm, sitting 96 bpm, and standing 137 bpm. Abnormal, unhealthy.  

I had the distinct advantage of having a sister who already went through the diagnosis process before me. She had to visit around a dozen doctors before she was told she had POTS — before they even knew how to test her for it. She had struggled with this condition since the third grade. After I got COVID and was home for the remainder of the summer, my mom already suspected I had Long COVID. I kept complaining about lingering shortness of breath and fatigue, but when I felt my heart pounding in my chest after popping up from the sofa to pee, I knew something else was also true. “You have POTS,” my sister said as I tried to catch my breath, sinking back down into the couch as my heartbeat made my whole body pulse. The pumping of blood battered against my skull in loud thumps. 

By the end of the summer, I had stopped sprinting up the flight of stairs three at a time. “You have POTS,” my sister would say as I climbed each step with care. After eating dinner, I grew lethargic and complained of stomach cramps. “You have POTS,” she mumbled while I languished on the couch next to her. Then the migraines started. They crawled up my neck and pierced through my eyes. All I could do was lie down in a dark room, willing my mind to go numb. “You have —” “Just shut up!” I would snap at her. 

My dad used to have this saying he’d tell my sister, “How about you only tell us when you’re feeling good, otherwise we’ll just assume you’re feeling like crap.” She complained a lot, and my dad grew up in a family where you don’t complain or go to the doctor unless your leg needs to be amputated. He worked hard to make sure our family was different from his. But old, ingrained habits — that can be passed off as jokes — die hard. After my sister got officially diagnosed with POTS he stopped saying it. I don’t remember the last time he made that quip.

I never voiced it, but I always agreed with my dad in my head. I was annoyed when my sister complained for the 45th time about her headache or said for the millionth time, “Look at how dilated my eyes are, Ava!” Staring at me, her gray-blue irises swallowed up by her gargantuan pupils. No matter how much I loved her, I would still roll my eyes. The long and short of it is: empathy doesn’t cut it. Unless you’re a mother. Something about motherhood just transcends the human condition.

I remember my mom telling me about my sister’s diagnoses in the car after driving me home from school. We were parked in the garage, engine turned off. “So we finally got some answers about your sister,” she said, her tone cool and official. An unsettling feeling crawled up my spine. She proceeded to explain POTS to me, at least her limited understanding of the condition which had yet to be inducted into the Paulsen Family Encyclopedia. I nodded and tried to act like this was a good thing. “At least we have answers now,” I remember saying. 

That night I googled everything I could about POTS, reading all the pages and studies I could find. Except there weren’t that many to be found. POTS is a syndrome, which means it’s “a group of symptoms which consistently occur together.” AKA the doctors don’t even understand it.

I got diagnosed with Long Covid in the fall of my senior year, but it wasn’t until February of the following year I received my POTS diagnosis. Both my parents came with me to the cardiologist who specializes in POTS (which really just means she’s diagnosed the condition before). The drive was nearly two hours. Dr. Argarwal took one look at my heart rate and said, “These are definitely POTS numbers.” I think it was harder for my parents to hear it, knowing how my sister struggled, knowing I’d have to go through some version of that too. Honestly, at that point, I already knew what the doctor was going to say.

Later in the appointment Dr. Agarwal told me, “No wonder you’re fatigued all the time. Standing for you is the equivalent of running a marathon.” I felt validated, but I also wanted to scream, You know I used to actually run marathons? Now I can’t even walk a mile! 

How did the Healthy Sister disappear so fast? Will she ever come back? 

There are rare moments at college when I’m comfortable. After a Shiatsu massage last week, a sense of serenity cocooned me. The feeling was marvelous and also extremely bizarre. Walking back to my dorm, I smiled as I walked by all the restaurants I ate at with my mom during our first trip to Evanston for Wildcat Day. Breakfast at Cupitol, lunch at Prairie Moon, and dinner Doordashed from Habibi — they sent me emails with coupons for weeks after I got home. I had to unsubscribe three times.

The masseuse said she could help with my tachycardia because the bodywork she does calms the autonomic nervous system. I felt transformed. My body became so much more comfortable to live in. My neck wasn’t aching, and my anxious mind wasn’t trying to claw out worries. Living feels so much better when you’re not dealing with a bunch of unrelenting discomforts. It becomes so easy to be happy. Life is just a little more beautiful. 

The first time I went to Northampton, Massachusetts, was when I moved my sister into her dorm room at Smith College, just a couple weeks after the start of my junior year of high school. I remember the New England summer humidity, how it clung to my skin, like how I clung to my dad when he dropped me off at kindergarten. I still have a faint memory of my teacher strangling me in a bear hug while he jogged away in an olive green polo and brown plaid shorts. I would cry and cry until I had so much fun I wouldn’t want to go home at the end of the day.

I remember carrying boxes of my sister’s quilts and teacups and leather-bound books with gilded pages up to the second floor of Tyler House where her double was. Over and over again, huffing and puffing with my dad. I took a break, and KonMari-ed my sister’s closet, folding all of her clothes in neat little squares and lining them up in rows. I know she likes things in rainbow order. I remember saying goodbye on the lawn the next morning. Lots of tears for 6am. My parents sniffled in the rental car the entire two-hour drive back to Boston for our flight home. I remembered the words that pulsed in my mind, like a second heartbeat in my brain: Thank God. It isn’t. My turn.

My sister always wanted to go to college. I mean, I did, too, until it actually came around. But she thrived at Smith College. I remember the first time she called her dorm room “home.” We were on FaceTime, the laptop perched on the stand on top of the dining room table. My dad positioned it in front of my sister’s chair so we could all pretend she was at dinner with us and not all the way across the continental US. She mentioned something about getting “home” from class. It stung. During winter quarter this year at Northwestern, I caught myself calling my own dorm home. I bit my tongue, saying, “I mean, dorm room.” My sister never felt the need to correct herself.

A sly smile slips over my sister’s face as she sips her tea. “Let’s not start working until after we enjoy our drinks,” she says. Her face is framed between the large green continents of South America and Africa; her blond hair eclipses the Atlantic ocean. She has to write a whole essay and I have a code to finish for computer science. 

“Okay,” I agree, taking my first bite of the chai tea cake, the frosting melting in my mouth. Delicious. “Want to try it? It’s huge. We can share.”

“My tonsils are swollen, remember? Wanna see?” Before I can reply, she opens her mouth wide, exposing the red, swollen flesh speckled with little white spots. If I did that to her, she would’ve screamed, but I lean forward, examining them.

“Yikes, that’s what mine looked like when I had mono.”

“I’m just flaring because of all the stress with finals and the freaking script I still have to memorize.”

“Yeah, what’s the play about again?” I ask, piercing the cake again with my fork. 

“I don’t even wanna talk about it,” she huffs. I smile. My dad works in the film industry, and my mom always says that his favorite production is the one he has just finished and his least favorite is the one he is currently working on. Like father, like daughter. It’s odd how discomfort can look so benign in the rearview mirror, when it actually consumed you in the moment. 

I reach down to slide my laptop out of my backpack. My sister sighs. “Yeah, we should probably start working,” she mumbles.

For the next hour, she is glued to her computer, her fingers flying across the keys. I have to take lots of breaks from my code. I’m trying to draw a monkey, and it’s killing me. 

“Look!” I shout at my sister, half an hour later. I whip my computer around to show her the rudimentary monkey I drew on python. It’s just three brown circles. “I did it!” I say, like a three-year-old at the pool screaming Watch me do a flip! Watch me! Watch me!

“Hmmm!” she hums in approval, her eyebrows raised before turning back to her essay.

I was the Healthy Sister, but I was also the Little Sister. Despite being over 4 inches taller, I am over two years younger than my sister, which means I am the baby of our family. Whenever my sister is home from college, I feel a biological urge to assume that role: asking her to define the fancy words she uses, making fun of Shakespeare or smacking her butt — which never fails to make her scream and me cackle. I like being the baby, but not many little sisters find themselves picking up the slack for their older sister. I did extra chores after dinner when her post-meal exhaustion hit, I always sat in the backseat of the car because she got carsick, and I formed a habit of shrinking my needs because hers took up so much space. Throughout elementary and middle school, I was very disciplined: completing my homework on time, cleaning up after myself, and keeping my room tidy. I started packing my own school lunches nightly in elementary school. 

Don’t get me wrong, I’m not saying, “Woe is me! I never had a childhood!” I did. My parents were keenly aware of how my sister’s needs infringed upon my own. They relentlessly tried to make more space for me, but I was indifferent to their efforts. I liked being independent. I was addicted to the feeling that I needed no one because I thought it made me strong.  

The Little Sister was a role I stepped in and out of depending on the circumstances. The Healthy Sister was my identity. Until it wasn’t.

The Shiatsu masseuse told me after my first treatment that bodies are wired to resist change. I got in a biking accident my junior year of high school, which gave me a concussion and also the whiplash in my neck, which never fully healed. She explained that my body was forced to tighten up in reaction to that trauma; my neck, spine, and nervous system got all wound up, and it became my new normal. For nearly three years, my body has lived in fear that I am going to fall again, so it stays braced for impact. Even though the work she’s doing will help my body heal, my body is going to push back because it’s altering its homeostasis. “The body resists change whether or not it’s good or bad,” she told me.

College tours made me physically ill. I got so nauseous touring Brown — my dream school at the time — I felt like I was dying. Some say it was my undiagnosed concussion (me); others say it was the thought of the future (the rest of my family). For years, my sister insisted I willed myself a UTI just before my first time at sleepaway camp. I made it through one miserable night. The next morning, the test results came back positive. Since the program wasn’t allowed to administer antibiotics, they sent me home. I was elated. 

The summer before my senior year of high school, I was in London, sitting on the hard mattress of an airport hotel bed. A positive COVID test in the waste basket. I was supposed to be on a train headed to sleepaway camp in Oxford. I just knew my sister was going to have a field day with this news. I learned months later, after my Long Covid diagnosis, that my mom made my sister promise not to crack any jokes. While I missed the first week of camp, once I tested negative, I got straight on the train. Sometimes, I wonder if I pushed myself too hard, if I tolerated too much discomfort, if it’s the reason why I’m still sick. 

Discomfort is a feeling. Our brain may grow conscious of it, but it manifests in the body. A study showed that women perform better on math and verbal tasks at higher temperatures, while the opposite is true for men. Something in the physiology of the body allows the brain to perform better at a certain temperature, depending on the sex of the participant. The truth is our minds have less control over our bodies than we like to think, and our bodies have a lot more control over our minds than I previously gave mine credit for.

I went to see a specialist in Chicago over Thanksgiving break for my tachycardia. He put a stethoscope in my ears and rested it on my chest so I could hear the thump of my own life source. “Now, try to breathe and tell your heart to slow down,” he told me. “Try to increase the distance between each beat.” He was monitoring my heart rate on a screen. After 5 minutes, he said, “Okay, that doesn’t seem to be doing anything. Let’s try something else.”

Harlan Cohen is a journalist and author who helps people of all ages navigate big changes in their lives. His slogan is, “Get Comfortable With The Uncomfortable.” That’s exactly what he told me during the Zoom my mom set up for me the summer before I started at Northwestern. Little did he know, that’s the job description of a chronically ill person. Get comfortable with your heart pounding like a jackhammer every time you stand up. Get comfortable with your brain shriveling when the classroom has fluorescent lights. Get comfortable completely forgetting words in the middle of a sentence; your mind just goes blank. 

I thought my experience of being chronically ill my senior year of high school would make me more prepared for the discomfort I’d experience in college, and maybe, in some ways, it has.

During my freshman year of high school, I would wear all these crazy tight, itchy outfits. The denim in my jeans would cut into my stomach when I sat down, my bra would make breathing just a little bit more laborious, and my feet would ache with every step I took in my brown high-top Converse. I wanted to feel cute. Now, I don’t even wear bras. I need breathing to be as easy as possible. Sometimes, it feels like an elephant is sitting on my chest when I’m in my pajamas in bed. 

I returned to Zen Shiatsu a couple weeks later for another appointment. The masseuse told me it could take around 4 to 6 sessions in order for my neck to unlearn the posture caused by the whiplash. I told her how wonderful it felt last time but also how, that night, the discomfort returned. It felt more raw, starting in my upper back and climbing up to my neck. No matter how I tossed and turned or changed pillows and positions, I couldn’t sleep. I didn’t take Advil. I’m weary about NSAIDS because I already have daily medication to lower my heart rate. It wasn’t terrible, just uncomfortable. It was the same thing the next night and the next. On the fourth night, it calmed down. I could sleep comfortably again. “Your neck was probably like, What is this?” the masseuse said. “We are feeling far too good! We need to go back to how it was!” I laughed, and she clarified, “Our bodies are comfortable within their discomfort because it’s familiar.”

My sister was in her sophomore year of college when I was in my senior year of high school. She was on the other coast, and we were both busy, so our mom often played telephone with the two of us, going back and forth to relay information. “Oh Ava, your sister says that the best way to deal with a sudden migraine is to dunk your feet in hot water” or “Make sure to text your sister to break a leg on her play today!”  And I would also get the occasional text that read something like, “Mom said your friends are being bitches again about you being sick, want me to kick their asses over winter break?” 

One day, my mom said, “Your sister told me something interesting today.” I can’t remember the details, but we were probably having lunch together after school. That was our daily debrief time. We sat in the dining room together, the warm afternoon sunlight stretching over the wooden table and our leafy green salads. Or maybe we were in her car while she drove me home from school, and I was trying not to fall asleep in the passenger seat. We were in her car together a lot senior year because I was too fatigued to drive myself anymore. “What did she say?” I ask. “Well, she was talking about how she’s been struggling with POTS her whole life, which is terrible, but the fact is she doesn’t remember what it’s like to feel able-bodied. She told me that you are cursed with the memory of health. You know exactly what you’re missing every single day.” My sister was right, of course. The Healthy Sister still haunts me.

I met with my creative non-fiction professor to go over this memoir-in-progress recently. He asked me lots of questions about the experience of being chronically ill, how it affected my relationship with my sister, and how I can express those feelings on the page. 

“It’s complicated,” I told him. But he pressed on, in the kind of way that lets you know he cares. I believe he can see the potential in my work and is pushing me towards it. So far, his class has been my favorite out of every course I’ve taken at Northwestern this year. I’m glad I got to end with it too. It makes me want to come back next year. 

“I guess I could talk a little more about how I never really understood what my sister went through until I experienced it myself,” I tell him. “I resented her for her illness, and now I just feel guilty.” 

 “Oh,” he hums, nodding his head.“So you were struck down by God!” He says, before letting out a raucous laugh — the contagious kind. I sit in the chair across from him, legs crossed. A smile splits across my face. I’m laughing too.  

“Yeah,” I agree, still chuckling. His sentiment was something I could never quite capture as a self-proclaimed agnostic who believes in Universes and Energies. I was struck down by God. 

I’m sipping the dregs of my matcha at Iconia Cafe with my sister. The slice of cake sits between us, demolished. Despite her efforts to avoid sugar for her swollen tonsils, I knew she wouldn’t be able to resist the cream cheese frosting. The best kind of frosting, we both agreed. 

Earlier this morning, my sister gave me the rundown for today’s plan: “Tonight there’s this Katy Perry-themed party we’re going to go to, so this morning let’s get coffee and power out our homework at a cafe. Then we can come back to Tyler House so you can take a little siesta while I study my lines before we go out.” Of course, my sister would schedule in Siesta Time, that’s just how she rolls — how I have to roll now.

My sister’s dorm room is on the fourth floor of Tyler House this year. The building has no elevators. The accessibility people at Smith majorly fucked up, but my sister’s a champ and has made great improvements with her health this year. She’s at a different place in her recovery than I am and able to do some stairs. Me? Not so much. But she knows this, and takes each flight very slowly pausing at the top to yammer for a bit, providing me with a much-needed break. She does it so naturally, never standing there awkwardly like my friends would while I pant like a dog as an invisible clock ticks overhead. Instead, she just starts talking. “So this is the second floor where Nora lives, you know, the girl who picked you up from the airport. She has an emotional support cat! I know!!! We totally need to stop by and give him cuddles, but unfortunately she’s not home right now, so I’ll text her when we get back to my room and ask when she’ll be back. Maybe we can stop by before the party tonight!” And then we tackle the next flight of stairs together.

The girls at the table behind us at Iconica are talking extremely loud. The volume is such that you can’t ignore it no matter how hard you try. I look up from my computer to lock eyes with my sister, whose fingers have paused on the keyboard. 

 “Usually, I time my edible so it hits right as I get to my room, and then it’s time to grub,” the loud girl says. We both know in our soul she’s a Smith student.

“Is that how you would describe Smith?” I tease my sister. She just closes her eyes and cringes, shaking her head slightly. Secondhand embarrassment is another chronic condition my sister suffers from.

“Do you want to take a break from all this work and go shopping?” She asks. “Saturn is working at the boutique. We can say hi.”

“Yeah,” I say, closing my laptop. “Let’s do it.”