by Tim Murphy
When she finished, he raised his hands, sighed, and said, “I’m in awe of the work you’re doing. I know I could get in trouble for saying this in some quarters, but I think you’re doing the Lord’s work.” He winked at her mischievously.
This made Issy blush uncomfortably. “Thank you,” she said.
“But you do realize we’re just coming out of a war and we’re in a recession and we already passed the Ryan White CARE Act to help American AIDS victims.”
Issy felt her heart rate spike, but she took a breath and thought of her movement friends back in New York. “Excuse me, we’re not victims,” she said bluntly. “We’re people living with HIV/AIDS and we need more research and funding—the women, especially.”
The deputy nodded vigorously. “I hear that,” he said. “I hear that. I see so many different constituencies and I don’t always get my terminology right. I apologize. I’m just saying we’re looking at a very tight fiscal picture right now, we’re in an election year, and we can’t necessarily accommodate every special-interest group in the country, because there are many. Your group’s actually received a lot of funding in the past decade.”
Now Issy’s heart was racing. “My group! We’re not a group. We’re people, we’re Americans. And we haven’t received good funding. Your president didn’t even say the word AIDS until 1987.” By now she’d repeated this angry mantra—that more than twenty thousand people had died before he uttered the word—several times, but it still shocked and enraged her as much as when she’d first learned it, making her realize just how disposable she was to her own country.
The deputy gently raised a palm to stop her. “Now, that was Reagan. Things have been very different under President Bush. He signed Ryan White. Please be fair.”
“Sir,” said the crew-cutted, young gay male staffer from GMHC who’d accompanied her on the trip, “I think Ms. Mendes would like to talk to you specifically about increasing funding for research on women with HIV/AIDS.”
“That’s right,” Issy said, embarrassed that the GMHC staffer had to refocus her. “You guys need a special program to make sure that the drugs are being tested on women.”
The deputy turned back to her and smiled in a way that felt, to Issy, both kind and fatigued. “We need a lot of special programs, Ms. Mendes. And we’re in a recession.”
Issy shook her head, enraged. “You know,” she said, slowing into a deliberate tone, steeling herself. “I wish you could have my vagina for one day so you knew what pelvic inflammatory disorder was like. I wish you could have the pain, and the nasty discharge, and the smell. The smell! And then you’d know that that’s a symptom of AIDS and that you couldn’t even get disability benefits from it because it’s a woman’s symptom and the government doesn’t consider it a real symptom. And then I think you’d think different about how important this is.”
Issy held his stare, which was a mask of studied concern. “Ms. Mendes, I’m truly sorry to hear about your health troubles. And”—here he turned to his young blond female staffer, so impassive in her headband, beige suit, and sensible heels—“we will bring your concerns into committee. Isn’t that right, Shonna?”
“It’s in the log!” the young woman said with Teflon brightness, the same drawl and the same faint edge of impatience as her boss.
Everyone was quiet for a moment. Issy had encountered this pause already today in prior visits—that unbearable moment when she’d spilled her heart out, when desperation and need had been expressed, when its expression had been politely acknowledged and documented and now there was no more to say. Other supplicants, with their own dread issues, were queued up in the reception area behind her. It was all so—Issy struggled for the words in her head—it was like lining up for confession, waiting for the priest to tell you something mind-blowing that would make your whole life right, except he never did. He just told you to go off and say some old prayers.
“I didn’t mean to gross you out,” she blurted out. “I just want you to understand.”
The deputy nodded indulgently. “You have been heard,” he said. “Very much heard.”
Outside, in the hallway, the GMHC staffer grabbed her arm. “Issy, you were amazing! That’s exactly what he needed to hear.”
“But he’s right,” she was surprised to hear herself saying, with a realization that was both a strange relief and also cause for a deeper despair. “We think this is everything, but to the government it’s just one out of a million things. It’s a grain of sand.”
“It’s more than just a grain of sand,” insisted the young man from GMHC.
Remarkably, though, they’d won. Later that year, 1991, the government had earmarked money to start a very large national study of women with HIV, tracking problems and issues that were specific to women. Even though the study would not formally start for another two years, the mere fact that the feds had funded it was a triumph. Wonderfully for Issy, many people in the movement pointed to her as someone who’d been brave enough to put her own story out there in D.C. to make this happen, and she’d received a shrieking ovation at the weekly meeting, everyone chanting “Issy! Issy!” Hector and Esther, standing on either side of her, held her arms aloft as though she were Rocky Balboa. She’d beamed with elation and felt a sense of belonging and acceptance she’d never known. There was more work to do—the government still didn’t include women’s problems in its official definition of AIDS—but they’d scored a victory. She’d scored a victory.
And then, of course, there was the fun she’d had the past few years, the friends she’d made. Had she ever thought she’d go to big summertime drag-queen festivals in this very park, Tompkins Square, where she’d wildly cheer on boys from the movement when they got up on stage in wigs and dresses and crazy makeup and did high kicks while lip-synching “Rip Her to Shreds”? Had she ever thought, after Tavi died, that she’d have such great, funny, gay guy friends again? She’d done the right thing showing up at that meeting one night three years ago. She’d had a pretty good three years.
On the other hand, though, there was the sickness. The missed periods and the fatigue and the winter colds that never seemed to go away and the chronic yeast infections and the antibiotics and the supplements—and, worst of all, the waiting for it just to get worse. And the rejection from her family. And the loneliness. Being surrounded by handsome boys who were having sex with each other like rabbits and her getting none of it. Even the other women were having sex all the time. She’d decided she wished she were a lesbian. If she were, a woman might love her and make a home with her and not care that she was no bombshell or that she had AIDS—women were just more like that, she’d realized, especially lesbians.
There had even been this dyke, a morena named Tiffany who looked like a tough little fourteen-year-old boy in a twisted baseball cap, who’d asked her on a date. She’d come right up to her after a meeting and said, “Let’s go to Nanny’s and get a beer and talk about this situation.”
“We got a situation?” Issy had replied, smiling.
“If you want one,” Tiffany had said, chucking her chin. “You look like you need one, sexy.”
Issy had exploded laughing, uncomfortable. “Tiffany, I’m not into women, right? But I think you’re really sweet.”
Tiffany had just sort of made a sad face and shrugged and twisted her cap around and swaggered away. Maybe she should have given Tiffany a chance. Maybe that wouldn’t have happened, because she wouldn’t have been so lonely.
In the bed across from hers at Judith House, Shirley, her roommate, was waking up.
“How long you been up, girl?” Shirley asked her through a yawn.
“Like an hour,” Issy said. “I couldn’t sleep. My back hurts.”
“You feel him kickin’ this morning?”
Issy ran a hand over what she felt was her horrifyingly huge belly. “A little bit.”
“Two more months
, girl,” Shirley said. Issy nodded slowly. Shirley had an air of sullen indifference about everything, but, Issy had noted, she was obviously following her pregnancy keenly because she was always counting down to Issy’s due date. “There gonna be three babies up in this house.”
“I know, right around Christmas,” Issy added. She looked down on the street and watched a junkie crouching and rocking in a phone booth. Did she know him? Living here going on six months now, she was starting to recognize the neighborhood’s junkie network by face, or by where each one liked to nod. She was pretty sure the one down in the phone booth was Ronny, who once told her, in one of his more sentient moments, that he used to work in a quarry upstate.
Shirley sat up with a start. “I gotta make breakfast today. Damn! I gotta peel potatoes.”
“I’ll help you.”
“No, you can rest, baby.”
“No, no, it’ll be good for me to walk. I can’t sleep any more anyway. Go use the bathroom, I’ll go after you.”
“Aw, thanks, baby.” Shirley creaked and groaned her way out of bed, wearing a Yankees T-shirt that came down to her knees and sweatpants. Shirley was a tall girl, but damn, was she a reed. You could put your thumb and index finger all the way around her biceps. But Shirley insisted she had always been skinny, that it wasn’t just the virus. She’d run track in high school in the Bronx, sometime back in the early 1960s. Shirley wasn’t political about the epidemic. She spent most of her day going to Narcotics Anonymous meetings and the rest of it playing cards in the park with a bunch of old guys. She also liked to cook for the house and was proud of her hash browns.
“I’ll meet you down in the kitchen, babe,” Shirley said. She grabbed her towel and her bag of toiletries and padded down the hall. Issy folded her hands over her belly. Another day at Judith House, she thought. It was Sunday—the one day that Ava didn’t come in. The girls would have a quiet day. Maybe they’d go for a walk, buy some magazines and cosmetics for themselves at a ninety-nine-cent store.
Issy would have to take her AZT soon. She’d have to take it right in the middle of breakfast to “bury” it as best she could, then after breakfast she would feel disgusting, nauseated, and strange in the head and have to lie down for an hour. She sat there and thought about the funny permutations and implications of things: if she had never gone to that first meeting of the movement, hadn’t met Ava and Hector and Chris and the rest, she would never have learned what inside researchers suspected—what, in fact, had just become a major scientific trial in order to confirm the suspicion—that a pregnant woman taking AZT could all but eliminate the chances of passing HIV to her baby. This had been documented the past two years, anecdotally, in hospitals in New York and elsewhere. She probably wouldn’t even be taking AZT otherwise, it was so disgusting, and by this point most doctors and activists believed that, in the long run, it didn’t stop HIV anyway.
But then again, she thought, if she hadn’t gone to that first meeting, she wouldn’t be pregnant now. Well, maybe she would be, but she wouldn’t be pregnant with—oh God, she thought. Was she crazy to have this child?
Ava was supporting her. It was tough for Ava, but at least she stood by her conviction that a woman could do what she wanted with her pregnancy, even if she was HIV-positive.
“But whose baby is it, Issy?” Ava would ask her.
“I don’t know,” Issy had lied. “I’ve—I haven’t been careful with a lot of guys lately.” If only that had been the case! she thought, laughing to herself. That might have been fun!
“Can we get in touch with them?” Ava asked.
“I didn’t get their last names or their phone numbers. They were just stupid guys I met in a club in Queens.”
Ava’s eyes widened. “Did you tell them you were HIV-positive?”
Issy nodded, continuing to spin her tall tales. “They didn’t care. They were all macho about it.”
Ava shook her head and rubbed her eyes, which looked perennially tired from the various psych meds she had to take. “Good grief,” she said.
Issy had stopped going to the movement meetings as soon as she started to show her bump in a way that made it clear she wasn’t just putting on a little weight. Ava promised her she wouldn’t say anything about it at the meetings. Issy didn’t want to go to meetings and deal even with the hint that people disapproved of her for carrying this baby. Every time somebody looked at her and her bump, she knew what they’d be thinking—or so she thought. I can’t believe she’s going to have that baby. So Issy withdrew partly to a scared place inside herself that she’d been in before she ever showed up for the first meeting. But not entirely. She did have Judith House, after all.
That, of course, was not the only reason she stopped going to the meetings. And it was well enough that Hector thought she wasn’t going because she was ill, which was unfortunately true. She was declining. And she knew Ricky was sick too, and that Hector was preoccupied with him, so better not to bother him with this anyway. She allowed visits from Esther, who lived a block away, and she’d told Esther exactly what she’d told Ava: she’d been lonely and yearning and, when she was still living with her family in Queens, went out a few nights and connected with random men, three or four.
She would have this baby. She would never miss a dose of AZT and she would have this baby and the baby would be HIV-negative. She still thought there was a chance she might live, that she might make it to the new, better drugs that were in the works—that all their work in the movement would kick into high gear in the research trials. It was only going to go faster once Clinton came into office! Then they’d have allies in Washington instead of enemies. But she wasn’t taking any chances. Yes, everyone in the movement said they were leaving a legacy, even if they died soon—they were deriving some meaning from all this, that they would leave something better behind. That was how the sick ones in the movement who knew they might not be long for this world kept their sanity. And she was among them. But she was leaving more than that. She was not going out of this world at thirty-three, thirty-four, thirty-five having left nothing behind. She knew her child would thrive. Ava would make sure of that; Ava had promised.
She wouldn’t tell Hector. He’d never know. It wasn’t fair to put that on him when he was taking care of Ricky. And curiously, Issy thought, that’s how it had happened—taking care of Ricky! Hector had told her on a Thursday that he was bringing Ricky home from the hospital that night, and Issy had said she’d drop by with a box of Ensure and some old blankets she’d cadged from her parents’ house in Queens. She wanted to make sure Ricky was comfortable and had everything he needed now that he was back in the apartment.
But when she arrived, she found Hector alone—no Ricky. Hector had been drinking tequila on the couch, watching Beverly Hills, 90210.
“What’s going on?” she’d asked. “Where’s Ricky?”
“Turns out he had a staph infection in his thigh so they had to keep him in longer, on an antibiotic drip,” Hector said. He spoke louder than usual, thickly, eyes cast down. Issy noticed he’d spilled tequila on the rug.
“Oh my God,” she said, setting down the box on the kitchen table. “Poor Ricky. He must be so sick of the hospital.”
“Naw,” Hector drawled. “He has some gay nurse now he talks astrology and bullshit with all day. About signs and moons and what’s rising and what’s falling. He feels fine. PCP’s cleared up.”
Hector was drunk. That much was clear to Issy. “Oh, Hector,” she said, laughing a little. She moved toward him and gave him a hug. “I’m sorry you guys are going through this.”
He put his arms around her. “We’ve been through it before. How you feeling?”
“Okay,” she said, smelling the tequila on his breath and feeling his large hands on the small of her back. She wanted to stay there. She had not been held close for a long time. But she gently stepped away. “Pretty good today, just a little tired.�
��
“How’s your family?” He motioned for her to sit across from him on the couch, and she plopped down, grateful to rest for a moment. He’d asked her in Spanish, which they slipped into occasionally when it was just the two of them.
“It’s stressful living there,” she answered in Spanish. “They don’t mind me going to meetings, but they don’t want me out in public. I told you my dad said I was bringing shame on the family.”
“Bochinche!” Hector exclaimed. Shameful gossip.
“Yes.” She laughed. “Bochinche. The nice girl brings down bochinche on her family.”
“You should move to Ava’s,” he said.
Issy paused. “I probably will soon,” she said. She wouldn’t mind the support she’d find there. At the same time, moving to Judith House also meant she was sick enough to qualify for a place there. It felt like a death knell. She didn’t want to feel that way—she knew it wasn’t fair to the other girls who already lived there—but she couldn’t escape the feeling.
She and Hector caught each other’s eyes for a moment too long, and she looked away. In the sudden silence, she’d felt the specter—el espectro. This was what, in her head, she called the dark pit before her when she was alone, when she wasn’t ensconced in the comforting shouts and cries of the meetings or rallies, or some of the high jinks they’d have from time to time in clubs. El espectro was simply when, in the silence, you realized you’d probably die soon, or that everyone around you was dying. No action against a government office or clever new poster or even hundreds of friends chanting the same words at the same time could really make the specter go away for good.
