Between Certain Death and a Possible Future

Queer Writing on Growing up with the AIDS Crisis

Mattilda Bernstein Sycamore, Mattilda Bernstein Sycamore

• Publisher: Arsenal Pulp Press
• Year: 2021
• ISBN:
  9781551528519
• Topic: Sozialwissenschaften
• Subtopic: LGBT-Studien

Every queer person lives with the trauma of AIDS, and this plays out intergenerationally. Usually we hear about two generations—the first, coming of age in the era of gay liberation, and then watching entire circles of friends die of a mysterious illness as the government did nothing to intervene. And now we hear about younger people growing up with effective treatment and prevention available, unable to comprehend the magnitude of the loss. But there is another generation between these two, one that came of age in the midst of the epidemic with the belief that desire intrinsically led to death, and internalized this trauma as part of becoming queer. Between Certain Death and a Possible Future: Queer Writing on Growing up with the AIDS Crisis offers crucial stories from this missing generation in AIDS literature and cultural politics. This wide-ranging collection includes 36 personal essays on the ongoing and persistent impact of the HIV/AIDS crisis in queer lives. Here you will find an expansive range of perspectives on a specific generational story—essays that explore and explode conventional wisdom, while also providing a necessary bridge between experiences. These essays respond, with eloquence and incisiveness, to the question: How do we reckon with the trauma that continues to this day, and imagine a way out?

To Make a Whore Of

EMILY STERN

HIGHLAND, INDIANA, 1991

“Mom?”

“What is it, Emily?”

The last part of my name became thinned, crackled netting as her voice lost its shape and sent her coughing again. I waited until I heard her spit.

“Mom?”

She didn’t answer but opened her door and walked past me into the kitchen. I followed and stood by the table, waiting as she poured a glass of water and put a cup of that morning’s coffee into the microwave.

Her collarbone created a crease in her gauzy leopard-print button-down shirt. Her short black skirt, usually classy-slutty and risqué, was limp at her waist with no “cornbread booty”—as her boyfriends used to call it—to speak of. The seams that were once bursting now hung, slightly bent and confused.

I wasn’t confused, though. I was increasingly sure my worst fear had manifested. It was just like the research papers I’d written in my English classes and the speeches I’d given in Mrs Petrin’s public speaking course. First came an unexplainable weight loss, and then a weird flu that didn’t go away. What happened next depended on the person. It could be purple splotchy lesions all over the body, Kaposi’s sarcoma, but that seemed to happen more with men. Women often got pneumonia. They had a shorter incubation period and almost always died faster. Aside from that, in 1991 there wasn’t much information about women who contracted HIV.

Abstinence education—the government’s and, in turn, the media’s answer to HIV infection—seemed more dangerous and destructive than all STDS combined. More shame. More secrecy. More puritanical bullshit, and so, more stigma. If you’d secretly polled most of the teenagers I knew about whether the threat of hell, or “gay cancer,” was keeping them pious on a Saturday night, their answer would be no.

Where we lived in Northwest Indiana, no one talked about safe sex. At Highland High, the nurse’s office refused to offer condoms, so I got free condoms at Planned Parenthood and strategically left them in bathrooms around school and around town. Sometimes I’d leave them in our bathroom at home, tucked inside a Star or a Mademoiselle, along with pamphlets about safe sex, HIV, and hepatitis. I figured that if she wanted to be loved so much that she’d date men who hurt her kids and stole her car, she probably wasn’t enforcing a “No glove, no love” rule. My mother never mentioned finding the condoms, and I didn’t mention leaving them. I never saw any pamphlets at Planned Parenthood about using clean needles, or I would have left those too.

I watched my mom drink her coffee over the sink. Steam floated from the mug; it looked like it was coming out of the top of her head. She made a loud slurpy sound, and for the billionth time I wondered why she didn’t just wait for her coffee to cool. I started to say that, to make her laugh, but shut my mouth, held my breath, and chewed on the inside of my lip.

Staring at her diminished figure, I tried again. “Mom?”

Silence.

“Mom … um … Have, have …”

She was facing me and leaning against the sink. She looked irritated and suspicious and ready to fight with me. She also looked tired and sad. I decided now was as good a time as any.

Deep breath. “Have you ever had an AIDS test?”

“What?”

I stumbled backwards, feeling indignant. And then angry. And then genuinely surprised.

Had she really not considered HIV? Or that her string of horrible boyfriends and her ongoing drug addiction might scare or upset her kids? Though maybe she hadn’t. I was almost certain that Jessica hadn’t ever called her out on anything. Jess was a drug-addled mother’s wet dream who instinctively followed the rule that children should be seen and not heard, an expectation seeping from our maternal, old-world mix of Catholic/Sicilian DNA. And, most likely, David had also never said anything, which was probably more of an adherence to rule number one of the Sicilian first-born-male bylaws: loyalty no matter what.

My loyalty was to the truth, and the truth seemed as obvious as the ever-growing lines of exhaustion on her face, and the windy echoes of a skirt searching for fifty lost pounds.

“Emily! What are you talking about?” she snapped.

“Well, it’s … it’s just that, well, you’ve lost so much weight. And you keep saying you have the flu, and you keep coughing. I … I was just wondering.”

I forced myself to look her in the eye, but she didn’t meet my gaze. Instead, she looked out the window, at the remains of a quickly fading sunset.

“Mom.”

Silence.

“You know what, Emily? Fuck you!”

She stormed into her room and slammed the door.

Fifteen minutes later, my mom emerged from her bedroom and stood behind the couch where I was sitting, punishing myself by watching the TV show Small Wonder. I didn’t look up.

“Yes, I have,” she said. “It was negative.”

I turned around, and we really looked at each other. I was surprised she’d come out of her room, and I was also surprised the test had come back negative—if she’d really gotten one. I just didn’t think I could be wrong, not that I wanted to be right about her having HIV.

“You went back for the results?” I asked her.

“No, Emily. They called me.”

I thought that was strange. One time I’d asked Planned Parenthood how it worked to get tested, and they’d made a big deal about how I’d have to come in to get the results no matter what.

“Where did you go? They don’t usually give those results over the phone, Mom.”

“I went to the Board of Health. In the city, okay?”

She waved both hands in front of her like a Sicilian member of the Supremes and said, “Now, stop! Enough! I’m going to lie down.”

She disappeared into her room and I thought it over. I knew from my studies that there was a three-to-six-month window between being exposed to the virus and the antibodies actually showing up on a test. My intuition was that she hadn’t lied to me about taking the test, or even testing negative, but, based on her symptoms, I thought she was actually now HIV-positive.

I’d asked my mom about the AIDS test in February 1991. In May, I was still worried. Her health was deteriorating or staying the same, depending on the day. Now she also had night sweats and chills. She seemed even more exhausted than before, but it was hard to tell whether it was from working. She had a new job with Baroni, a new company at Bloomingdale’s, where she made various shades of lipstick and eye shadow on-site, right at the makeup counter. I was so happy when she got that job.

Her best friend Barbara had once told me that mom had wanted to go to the Art Institute of Chicago before I was born, and that she’d been a painter—mostly oils. Only two of her paintings were in our house, and they were both buried in the basement somewhere. One was a still life of roses; the other was a Dracula-looking clown with a blank expression. I wanted my mother to experience colors and creativity and success, and her new job gave her that. The customers loved her, and she was brilliant at it.

I’d still been studying AIDS every chance I could. I’d just finished my final research paper for my AP Biology class, and it was on the opportunistic infection cytomegalovirus.

Cytomegalovirus (CMV) is a member of the herpes virus family. Around 80 percent of people have it, but it doesn’t show up as more than occasional swollen lymph nodes or a fever, unless you have a compromised immune system. If you have an autoimmune condition, CMV can escalate quickly, leaving the patient blind and in pain, and his or her nervous system crippled.

I can’t remember why I’d picked that particular disease, but I’d written ten pages about it, and I got a grade of ninety-eight percent. Well, no, actually, I didn’t get the ninety-eight percent. The friend I gave my paper to got the ninety-eight percent, but had I been able to turn it in, that would have been my grade.

I didn’t get to graduate from high school. Three weeks before graduation, I was kicked out. I wasn’t failing any classes; I just didn’t go as often as I should have. It was extra awful because I’d been awarded a scholarship to go to college for musical theater. My beloved guidance counselor, Mr Hedges, said, “Em, just go anyway. It’ll take them at least six months to figure it out, and by then they probably won’t care!”

I replied, “Um … yeah. No, thanks. I’m not into that kind of humiliation.”

By late spring, my fears permeated my thoughts every day, including a random Friday afternoon hanging out with my best friend Jason at my mother’s house. I stared into the insipid yellow-with-stock-clip-art-pictures-of-flowers wallpaper, thinking about how ridiculous it was that someone who’d gotten a ninety-eight percent on a paper had just been kicked out of high school, which then made me think about HIV … and then my mom.

I turned my brain off, lit a cigarette, and realized I’d been waiting for what seemed like forever for Jason to finish fixing his makeup and Boy George hairdo. Finally, he sashayed his gloriousness out of the bathroom, fanning himself with a stack of pamphlets (my campaign of infiltrating my mother’s magazines had continued), and sat down next to me at the kitchen table.

“What’s up with these?” he asked as he spread the pamphlets for services offered by Planned Parenthood—including the proper way to put a condom on a banana and how to do an at-home breast examination. He pulled out the pale blue one—free HIV screenings every Wednesday between three and six p.m.—and held it up.

I ignored the brochure and gave him my most defeated, forlorn face.

“I can’t believe it, Jason. I’m a goddamn statistic. I can’t believe I’m not going to graduate from high school!”

“Um … really? No offense, but you weren’t exactly winning any awards for attendance.” He crossed his eyes and stuck out his tongue.

I laughed. “Fuck. You.”

“Ha! Whatever. Fuck you, too. Anyway … So, what’s up with these?” He waved the HIV information in front of my face.

“I’m just worried about her,” I said.

Led by his shoulders, Jason’s torso began to involuntarily move back and forth, while his neck became an unwavering frozen steak; he nodded and looked down at the papers again, silent. He was tough in a lot of ways, but anything involving sex, nudity, or blood easily pushed him over the edge.

“Yeah. Me too. I’m worried, too. Do you really think she might have AIDS? Really?”

“Yeah. I do. God … She’s so annoying. Why couldn’t she just marry for money and get addicted to Valium like other moms?”

We laughed, and he said, “Yeah, not Toni Stern. She doesn’t want any of that fancy stuff, like stability or joint bank accounts or trips to the grocery store. The dank weed and a nice eight ball, however …”

When I was eight years old, my mother called me a fucking whore. I ran to my busted, cracked paperback dictionary, the same one my best friend Selena and I had used when we’d played the game “pick a random word and guess what it means” in first grade, and looked it up.

Whore:

noun
a woman who engages in promiscuous sexual intercourse, usually for money; prostitute; harlot; strumpet

verb (used without object) to act as a whore

verb (used with object) to consort with whores

obsolete: to make a whore of; corrupt; debauch

In January 1992, six months after my mother’s HIV-positive diagnosis, I talked to her on the phone after a doctor’s appointment. I asked her how it had gone.

“I told him my eyes have been acting weird and my leg hurts, and he said I might have something called cyta or cyto virus.”

“Cytomegalovirus?”

“Yes! That’s it. Is that bad?”

Yes, Mom. That’s bad. That’s awful. It’s one of the most horrible, fucked-up, irreversible things you can get.

I wished I hadn’t known about that virus at all.

“No, Mom. It’s not so bad. They have a lot of drugs that can slow the progression. You’ll be okay.”

I met Aurora on an ordinary night. It was stuffy and unbearable, but the same as every other July in Indiana. It may have felt even more suffocating because I was in my old room at my mother’s house. The TV was on in the living room, and I heard The Arsenio Hall Show playing. I couldn’t be there. Couldn’t stand it all. I was restless.

I walked into the living room, and my mom looked up, her eyes slightly confused but welcoming. “Good night, honey,” she said.

I kissed her puffed-out, steroid-infested cheek and wondered who she saw in the mirror. I recognized her, like someone you’ve met somewhere but whose name you can’t remember.

I pretended to go back to my room. Instead, I quietly opened the back door, the same way I’d done in high school, and left.

With nowhere in particular to go, I climbed into my 1978 Pontiac Catalina, the bumper still held in place by duct tape and two coat han...