A Religion of Disease by Julianne Carew

Content Warning: This essay contains explicit sexual content and drug use, as well as medical situations.

 

I found out my mother had cancer from the secretary at her work. I had agreed to cover my mom’s classes, and after I picked up the keys, the secretary stopped me. She got up from behind her desk and came around to give me a hug. She and I had never spoken beyond the realm of pleasantries.

She whispered, I’m so sorry about your mom.

I remember my whole body twitching. “What are you talking about?”

The secretary stepped away from me. “The lump in your mom’s breast.” She tried to look me in the eye, but she couldn’t. “She didn’t tell you?”

I stood there, immobilized.

“No,” I said, “she didn’t.”

#

The night before my grandmother went blind, I was in trouble. I was in trouble because my mom had told me that I needed to clean my room before I left to spend the night at my grandparent’s house, and I forgot. I tried to explain to her that I really had forgotten, and that I hadn’t ignored her on purpose, but she said that it was wrong to tell lies.

I was sleeping next to my grandmother when I woke up to the sound of screaming. She was clawing at her face, hyperventilating, screaming Kat, Kat—are you there? I opened my mouth, but no words came out. I went to turn on the light and wake up my older cousin. He was mean and angry and made jokes that were not funny, but he came when I called out for him. He led me back to the bedroom and put his finger over my lips. My grandmother didn’t move. I remember not understanding how she couldn’t see what was right in front of her.

Later, I remember locking myself in the bathroom, staring at my image in the mirror and not quite believing it. I closed my eyes and touched my eyelids, felt the hardened jelly give ever so slightly under my touch. Then I did it again, and again, and again. I did this for months, until my eyelids were sore and swollen and bleeding.

#

After that my family worshiped a religion of disease. Doctor’s appointments, teeth cleanings, flu shots, my mom had a color-coded calendar hanging on the fridge to memorialize these appointments. That calendar was the cornerstone of my childhood.

When I got a little bit older, I woke up to blood and pain and confusion. At first, I thought that I was dying. I felt infected, diseased.  I knew I should tell my mother what was wrong, but I didn’t want to, and I didn’t understand why. When she found my bloodstained underwear, I started to cry, and told her that I was afraid of what was happening. She looked at my little girl arms, my non-existent hips, and she started to laugh. At the time, it felt like a confession.

#

My senior year of high school, my mother took me to get my eyes checked. She didn’t tell me about the appointment. She simply drove me from school, me, still wearing my blue and white checkered Catholic school uniform and parked in front of the optometrists’ office and said, “Get out. We’re doing this.” When I didn’t move, she handed me a little white pill. I let it dissolve under my tongue.

I remember the male medical assistant who took me back to the exam room was hot. Like, he’s too hot to be locked-up inside a beige building, hot. He was probably only about five years older than me, and the nearness of him made me overtly conscious of my messy ponytail, my Catholic school skirt, and the fact that the only make-up I was wearing was on my neck to cover up my hickeys from the weekend. He guided me from machine to machine until it was time for the air puff test.

“Just relax,” he said, “This will only take a second.”

But it did not take just a second, because every time I heard the machine start to puff air into my eye I yelped and blinked and backed away from the table.

After almost a half-hour of me yelping and blinking, yelping and blinking, the hot medical assistant stood up and said, “You know what? It’s fine. Let’s move forward with the exam.”

“But wait!” I said, “What if there’s something wrong with my eyes and you can’t check it because we haven’t done the test?”

“Look, this is just not going to happen. You don’t have any other risk factors. I’ll make a note of it in your chart. It’s fine.”

I was sweating through the polyester of my cardigan; trying to imagine all of the horrible diseases I had recently Googled. “But—What if I have chlamydia?”

The medical assistant looked up from his notes, stared at me.

“Chlamydia?”

I nodded. He looked me up and down.

“I certainly hope that you don’t.”

He led me back to the exam room and left me there. The doctor came in not long afterwards. I never saw the medical assistant again.

In the car, my mom asked me how my appointment went.

“It was good,” I said. “Except they couldn’t check for chlamydia because I couldn’t sit still for the eye puff test.”

What? Kathleen, do you mean glaucoma?”

“Yeah. What did I say?”

“A venereal disease.”

“Fuck.”

#

You would think that someone who grew up so paranoid of potential disease would become a careful, conscientious adult, but that’s not what happened. Hypochondria for me was never about the fear of getting sick. It was a fiction, an elaborate game of pretend, a story I told myself and then fed into.

In college, I smoked, and I drank, and I snorted as many pills as I could physically shove up my nose. I had a lot of sex, multiple times a day with multiple different people, because I subconsciously believed that, in order to reclaim my body, I needed to destroy it. I wasn’t addicted to any specific substance. Cocaine. Stress. Alcohol. Weed. Xanax. Worry. Shame. I was addicted to the idea of oblivion.

I wouldn’t have survived my freshman year if I had been randomly placed in any other dorm. Literally, both sets of my next-door neighbors each drove me to the hospital on two separate occasions. When the guy down the hall got arrested for selling coke, everyone on our floor pitched in the last of his or her part-time summer job money to bail him out of jail. We never asked him to pay us back. He never turned us in for being his best customers.

At San Diego State no one was in good enough condition to go to class on Fridays and eventually, the school stopped offering them. The guys used to go down to Tijuana to drink and stock up on drugs Thursday night and one morning, they came back with a bunny that they’d bought off the street and smuggled in a sombrero over the border. We kept him and named him Alfalfa and he hopped freely from room to room until one night when we had a huge party and someone (we never discovered who, although almost all of us admitted to not remembering most of the night), put beer in his feeding bowl and when we woke up, he was dead. We put him in an old, disintegrating leather purse and buried him on the beach. Almost everyone cried. I remember feeling guilty because I couldn’t.

#

The next time I went to the eye doctor, there was nothing wrong. It was an annual checkup. I scheduled an appointment, stole three little white pills from my mother’s jewelry box, and took them in fifteen-minute intervals as I ate an edible in my car and waited for my appointment.

It was the middle of the day and the office was mostly empty. The nurse who took my vitals was an older lady, kind and soft-spoken. It took until the nurse showed me the brand-new, low-pressure eye-puff test to realize that I still had my sunglasses on. I got through the preliminary exam without any issues.

Once the nurse led me back to the exam room, I checked the redness of my eyes and waited for her to leave. I waited and waited and waited but she never did. We made small talk. She asked me how to post a picture of her kids on Instagram. My mother was her older son’s 8th grade English teacher. Her name was Jamie.

After a while I took another pill and asked her, “Why are you waiting here? Is something wrong? Aren’t I supposed to be waiting for the doctor?”

Jamie put down her phone and picked up my chart. Just then, the edible started to kick in.

“Well you know, it’s pretty slow today. I just thought I’d sit with you while you wait for the doctor.”

“It says it in my chart, doesn’t it?”

“What?”

“My chart, it says that I’m crazy, doesn’t it?”

“Well, you know, what you have to remember is that the eye doctor is the easy doctor. You get to keep your clothes on, relax. Most of the problems we see here are totally fixable. There’s absolutely nothing to worry about.”

I started laughing, manically. Jamie added another note to my chart.

#

I wasn’t technically broke when I called him. I had seven dollars in my wallet and my dad’s auto-transfer to my bank account was scheduled to hit at midnight. So, at ten o’clock on a random Friday night, I called my drug dealer, whose number I had on speed dial. He answered on the first ring.

He asked me what was up.

“Hey, well, I’m just walking home from a party right now and I wanted to pick up and…well, I hate to ask you this but there’s a lot of weird people out tonight and the ATM is kinda out of the way and I’m about to pass your house, so I was wondering if I could pick up now and pay you first thing in the morning?”

Through the phone, I could hear the echoes of partying. It occurred to me that I was drunk. I sat down on the sidewalk to keep it from spinning.

I don’t know how it happened. Not in a fictional sense, where I can remember what happened and am unable to justify the things I allowed. I literally cannot remember.

I remember being on the sidewalk and then being in his bed. We were going at it, our hands moving down the skins of us so fast that they got lost in the cross stitches of desire. We were humping and grinding, humping and grinding and he was hard, harder than any length of my resolve and I wanted him. I wanted him so bad that I didn’t care about the why or the how; I was in a heightened state of barbarianism.

I tried to take off his clothes, but he wouldn’t let me, so I tore off my own and I waited. I waited for his tongue to kiss my other mouths and when I came, I came so hard, I howled. He wouldn’t stop until I was shaking.

#

My mother usually picked me up from school, but one day, my older cousin was waiting for me outside. He told me that there was something wrong with my mother, that she was in the hospital, and he needed to take me there right away. When I asked him what was wrong with my mom, he reached over to the passenger’s side of the car and squeezed my chest. Then he laughed and laughed, and I pretended to understand why.

By the time we got to the hospital, my mom was already in the exam room. I asked the nurse if I could go give my mom a hug. That’s exactly what I said, can I go give my mom a hug, not realizing how ridiculous that must have sounded.

I could tell my mother had been crying. Her eyes were swollen and bloodshot. She was wearing a paper gown. I went to give her a hug, but my mother backed away from me, surprised.

“What are you doing here? I told Jeff to take you to practice.”

I shrugged. “I don’t know. He took me here.”

“I told him not to do that.”

“Why did you have Jeff pick me up anyway?”

“What do you mean?”

“You know he’s—weird.”

My mother crossed her arms over her chest. Her eyes went dead. “Now is not the time to talk about this.”

Now is not the time.

#

I took the HIV-AIDS Studies class because a girl on my floor had said the easiest professor in the science department taught it and he happened to have a drinking problem, so he almost never made it to class. I was on the verge of academic probation and enrolled without giving the curriculum a second thought. That was a mistake.

The first day of class the professor went over the structure of the HIV virus, and how it stitched itself unknowingly into its host’s DNA. Then he showed us pictures of the progression of the disease, the swollen lymph nodes and fevered skin and mismatched tongues covered in mold. I started Googling symptoms, over and over and over again. I made a list of all the people I’d slept with and cross-referenced what I knew of their lifestyle to the probability of them having contracted HIV.

I went straight from class to the health center on campus and demanded a full blood panel. The receptionist said there weren’t any appointments available until the following week. I told her I couldn’t wait that long, that the solidity of my mental health was at stake, and she said, fine, I could leave my number, and she’d call me if there was a cancellation. I said no, I’m not leaving this building until someone draws my blood. She looked at me, sighed, told me to take a seat and wait, but she couldn’t make any promises.

Two hours later I was finally led back to an exam room, where a medical assistant drew my blood. She said a nurse would call me with the results in two days. I told her I couldn’t wait two days. I was barely able to wait two hours.

The nurse stood back, looked at me, whisper-asked if there was anything else I needed to tell her.

I stared at her, confused. She put her hand on my arm. “Is there something that you might want to talk about?”

I flinched, turned away, mumbled, “That’s a complicated question,” and I left.

#

Two days later, the health center called me and said that I needed to come into the office for my results. I decided I wanted to be cremated before I even sat down in the waiting room.

That night I went to a bar by myself and took tequila shots until the bartender kicked me out. The last thing I remember is trying to walk home and stumbling, stumbling so hard that I fell, hit my head on the sidewalk, and crawled to the nearest bus stop so that I could lie down.

I woke up in the emergency room, where a really hot doctor told me a group of people I didn’t know had dropped me off. I had an IV in my arm, puke lathered down the front of me, the taste of tequila still in my mouth.

#

Not long after, I dropped out of college and moved back home, where I became a ghost-daughter. I stayed up all night and slept all day. My mother barely spoke to me. Our world became one of silence.

My mother never told me she had cancer and I never asked. Disease was no longer a comfort; it was a reality neither of us wanted to face.

Still, it was hard to ignore what was happening. My mother appeared smaller, her eyes lost, my resentment towards her almost entirely gone. After her chemo treatments, I used to go into her room while she was resting and try and say something to comfort her, but when I opened my mouth no words came out. I always left before my mother opened her eyes.

When her hair started to fall out, I took a section of my own and ripped it out and left the strands on her nightstand. My scalp bled for days.

Not long after, my mother came into my room and said, I think it’s time. I didn’t know what she meant, but I followed her outside. It was windy. She handed me a pair of scissors and sat down on the ground. She cried as her hair was swept away, into the realm of the before.

 

Julianne Carew

 


 

Julianne Carew is managing editor for the East Jasmine Review as well as a Pushcart Prize-nominated author who focuses on creative nonfiction. Currently, she is pursuing an MFA at Bennington College. She lives in the Los Angeles area, but travels all over the world collecting stories. Her work is featured or forthcoming in, Anti-Heroin Chic, 805 Literary Magazine, and in numerous anthologies.

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