Until the Cure: The Life, Love, and Loss of Mary Lucey and Nancy MacNeil

Jeff called first. When I didn’t immediately answer my phone, he called my wife Lisa. I was in my office waiting for an online lecture to begin about Frantz Fanon and the anticolonial history threaded through contemporary psychoanalysis.

The week after two mass shootings in Asian American communities in California Mary had called wanting to know if my Okinawan American mother and I felt safe. She wanted to know how I was thinking about safety, harm, and community. I told her that mentoring younger queer clinicians was increasingly about interrogating the ways clinical practice either participates in oppression and harm or actively resists becoming a weapon of state and interpersonal violence, and my work was increasingly about making those choices explicit and connecting them to our histories. She had paused, taking in what I said, trying to fit it into the urgency of our history of street activism. She wanted everyone out in the streets. And so she heard my answer and paused, then said “Whatever makes you happy and you think gets the work done. We gotta get the work done.” She was always focused on immediacy and practical applications in times of crisis. And it was always a time of crisis. Nancy, Mary’s wife, was the one who would talk with me about philosophy, poetry, and the historical context of movement building.

“How is Nancy? Can I talk to her?” I’d asked. “Nan is,” Mary paused, “sleeping.” “Are you two alright?” I asked, even though I knew it was a complicated question and there wasn’t a good or easy answer. Mary’s body was ravaged by more than 30 years of AIDS medications; Nancy’s 72-year-old bones were struggling to recover from spinal surgery and a shattered shoulder. “Oh, you know. Enough.” Mary said, “We’re hanging on. Sometimes by a thread. You know. Anyway.” She stopped. “Mare?”  “Let’s talk tomorrow,” she said, then “Love you. Mean it.” It was how she often ended calls. A loving and testy hard no that ended any conversation.

When Jeff couldn’t reach me, he called Lisa. I heard her coming up the stairs to find me as I noticed my phone flashing and Jeff’s name on the screen. I knew.

Their love story was epic. It was the stuff of legend and romantic projection. Nancy and Mary met when they were in rehab more than 32 years ago. The story goes that they were assigned as roommates, and Mary said to Nancy, “There’s something I have to tell you. I have AIDS.” Nancy, without pausing a beat, said “There’s something I have to tell you. I snore.” They fell in love and came to the first meeting of the ACT UP/LA Women’s Caucus soon after. Their names were one phrase in ACT UP. MaryandNancy. As in, “Are MaryandNancy coming to the action next week? We better have a legal team in case they get arrested.” Or “Someone call MaryandNancy, we need help understanding the new CDC report on women and opportunistic infections.”

We were on and off the phone with Jeff as he talked with Mary. Should we drive the three hours up the coast to her? We wanted to be with her. Mary said yes, I want you to come. And Jeff said yes, we’re on our way.

While Lisa packed the car, I called Seh. “Hey, Honey,” she answered the phone. “I’m making applesauce. What are you doing?” I could hear her smiling. She sounded happy. We all met in ACT UP in the early 1990s and became an extended queer family. Seh is an Indigenous public health policy maven now working for the CDC in Atlanta. But she wasn’t working on this Saturday afternoon. She was playing in her kitchen. That made it harder. I love domesticated butches. Butches who are skilled at being in charge, who make me feel safe in the world and tended to at home. And now I had to tell her that Nancy was gone. 

Lisa and I were on our way to pick up Jeff when our phones started blowing up again. Three blocks from his house, Seh’s name popped up on my phone, ringing, ringing. Stopping. Ringing, ringing. And Lisa’s phone ringing with Jeff’s number. By the time we parked at Jeff’s we knew. Mary collapsed and died just after Jeff told her we were coming and she said yes, come.

We drove up anyway, three hours north to the little seaside town where Nancy and Mary had retired, close enough to drive down to LA for visits and doctors, far enough away for quiet and affordability. Seh said they had named her the executrix of their estate, but she couldn’t get there from Atlanta yet. Could we drive up and gather the most important paperwork. And find copies of their will and their trust. When Seh said those words, it was the first time I heard the vast space between what we feel them to mean and what they mean as documentation. Will. Trust.

We arrived long after dark. A few family members and neighbors were there. We talked. Then we didn’t talk. We all wandered around the house together. Picking things up and putting them down. Timer, the dog, followed us around. I sat with him, and he raised his sad eyebrows and sucked on my fingers. I called Seh, “I don’t know if I can do this.” “Poor grieving baby,” she said. I knew she meant the dog. We couldn’t stop to grieve yet. “Give him their pajamas to cuddle. We have work to do.”

It was good to have a task. The neighbors, a gay couple who were good friends to Mary and Nancy and had been Mary’s first call just 12 hours earlier, brought over a piña colada teacake they baked for us. We didn’t think we were hungry, but we had forgotten about dinner and eating in Mary’s kitchen made it feel almost like normal. After the family and neighbors left, Lisa, Jeff, and I started organizing what we could, looking for keys, files, computers. We kept getting distracted by love notes between them, and stacks of unsorted photos.

-Mary at an ACT UP action fighting for a change to the CDC’s definition of AIDS so that it would include opportunistic infections specific to women’s experiences of HIV.

- A press conference about winning compassionate release for Judy Cagle, an incarcerated woman living with HIV, so that she would be able to die at home with her family.

- Nancy in the late ’60s, protesting against U.S. imperialism and the war in Vietnam, and organizing with the Black Panthers as part of the brigade of poor white people who collaborated with the Panthers for community-oriented medical and food justice.

- Nancy getting dragged off by her hair by police at an ACT UP demonstration.

- Mary with Roxy who was one of Mary’s cohort of HIV+ radical women.

- Me and Nancy in the mid-’90s, dressed up, her in a silk flowered tie and white dress shirt, me in a fragile flowered silk kimono hand-stitched by my grandmother before wartime Incarceration, on our way to the wedding of Roxy and Matt, who had met in ACT UP.

- Mary with Pete, who was Jeff’s husband and one of ACT UP/LA’s fiercest warriors.

- Pete’s memorial in 2012.

- Ferd Eggans’s arm. Ferd, part of ACT UP, was the LA City AIDS Coordinator. He had the names of his dear friends with AIDS tattooed on his arm. As his friends died, he had their names crossed out. Mary’s name was on his arm.

“Look for something like a lockbox or a fireproof box.” Seh said. Though it was the middle of the night in Atlanta, she was up with us trying to imagine where Nancy and Mary would have stashed everything important. I noticed an antique stove in the corner of the kitchen, not connected to the counter with the modern oven and range. Cautiously I opened the door. Piles of sorted and unsorted files and mail faced me. Bank statements were stacked with junk mail and post-appointment summaries from Nancy’s orthopedic surgeons and Mary’s HIV doctor. I closed the metal doors, deciding to leave it for morning.

Jeff was in the other room organizing the detritus of 30 years of HIV medications and prescriptions into categories. Finally, we decided to try to sleep for a few hours.

Lisa went to the bathroom to brush her teeth and came out laughing. “What?” “Just, them. You’ll see.” On the shelf in the bathroom was a giant candy bowl filled with red and blue striped Tylenol.

Jeff unfolded blankets on the couch, staying in arm’s reach of the sad dog. Lisa and I went upstairs to the loft.

About 30 years ago there was a stretch of time when I could only fall into deep sleep if my body was in contact with Nancy’s body. After nights awake on death-vigil with one of our chosen family, I’d drive to Nancy’s office at Being Alive, the AIDS service organization in LA where she had become the founder and first executive director of Women Alive, a project-turned-organization for women living with HIV. She’d take a pile of paperwork to the patio and we’d sit next to each other, our bodies pushed together and my head against her shoulder as she worked and I napped. Sometimes on a weekend afternoon I’d drive to their house in Venice Beach and curl up on the couch with my head in Nancy’s lap as she read reports, clinical trial updates, and funding budgets. I’d wake startled, nightmares about our friend’s last breaths, and she’d rest her hand against my cheek until I fell asleep again. In the evening, Mary would come out of the kitchen with dinner for us and whoever else dropped by needing company or care.

The Morning After

At sunrise, after a few hours or maybe only a few minutes of sleep, I sat up startled, and immediately hit my head on the sloped ceiling of the loft. I could hear Jeff still snoring downstairs.

In the early morning light I saw the kitchen as Mary must have seen it every morning. She was usually awake before nocturnal Nancy, so she likely started the day before she found Nancy not sleeping, but gone. There was still a half-made carafe of coffee on the kitchen counter. Mail partially opened. Keys on the table. In the sink was a colander filled with deep red cherries, already rinsed. Bananas edging toward overripeness were on the counter by the window.

During the first few months of the COVID pandemic, we had regular FaceTime dates with them. Mary was frustrated, wanting to be out in the world, doing things and talking with people. After they retired to Oceano, Mary was elected to City Council. Twice. “So much for retirement from politics,” we’d all rolled our eyes, teasing her, as she insisted that she could do some good, keeping land and water safe, and keeping people from being priced out of their communities. Her terms had ended, and so COVID made her restless. “Stay. Inside.” Seh kept saying to all of us in those first few months, as she was immersed in navigating the CDC response and funneling resources toward care in Native communities. “Make as much space as possible for the essential folks who can’t stay in. Care for them, don’t make their lives harder.”

During one of those Saturday morning FaceTimes, Mary and I were both pacing our separate kitchens, looking for projects. I looked around mine, at the groceries on the counter. “Maybe banana bread?” I asked. She looked around, then held up her own bunch of browning bananas. “But what will we do with all of it since no one is just stopping by?” she asked. I shrugged. Then we both said “neighbors.” She laughed, her long-time smokers cough always at the periphery of her laugh, and we reached our hands toward each other through the screens.

“You know, if they do something real about COVID it will be because of us, everything we did in ACT UP. Rapid testing, drug releases, and how to take care of everyone. The straights don’t know how to do that, not the way we do, the numbers of dead and sick. The queers learned how to do this already. We had to. Until the cure. Even after.” Even as Mary says it and I nod agreeing, because what we’re really doing is trying to convince ourselves that we will weather this together, we’re both thinking but not saying that we’re worried about Seh, traveling between hot zones of rising infection in underresourced Native communities, trying to make sure resources get to those who need them most. Seh has years of experience code switching between tribal communities and the CDC, but we worry about the frayed edge of fatigue and frustration. Jeff was the first one of us to test positive for COVID, and we all texted and called each other multiple times a day, checking on him, making possible care plans, just in case. We’ve already said we’ll take care of each other, all of us. Every time we talk, we promise.

Mary and Nancy always stayed with Jeff when they drove into LA. Just a few days earlier Jeff had texted us a video of Mary in his kitchen, filling it with groceries he wouldn’t be able to finish, asking him which of three kinds of toast he wanted with potatoes. They were both laughing.

I could hear Jeff and Lisa talking in the other room. Lisa came into the kitchen and found eggs in the fridge to boil and bread to toast. When we don’t know what else to do, we feed each other.

I start looking through the antique stove. Insurance forms for the cars, blueprints for the house, Xray results from Nancy’s broken shoulder. Handwritten questions for doctors tucked between a ripped-out page of a phone book and a flier for a 25-year-old ACT UP action. I feel the floor wobbling and the room starting to spin. How are we supposed to do this?

Seh calls, wanting to know if we’ve found the will yet. “Why don’t you have it?” I ask. “You think they’re that together, that they sent it to me?” she laughs, and from the edge in her voice I can tell she hasn’t slept any more than we have. “Keep looking. We have a long list of things to find.”

“Seh…” I’m starting to lose it.

We all know how to play with power together. Persuasion. To ask for the impossible thing so the negotiation leads to the thing we really need. We honed that skill in ACT UP when fighting with big pharma and government officials. Ask for the moon when you actually want the stars. And sometimes, like now, we use our determination, our will, our desperate desire, to push each other.

“Please,” says Seh.

Sometimes we really do want the moon.

I do another round of looking, then call her back and put her on speaker. She can hear the “no” in my voice. Lisa updates Seh on a few things she’s found, and hands me a cup of coffee. Seh asks, “Have you looked around outside yet?”

I take a walk outside with Timer, looking at the garden, the beautiful plantings Nancy and Mary have both tended. And I start to notice things I hadn’t seen when we’d arrived in the dark. Odd, unfamiliar plants. And along one part of the fence, half tucked into the soft soil, about a dozen bowling balls, different colors, with plants growing around them, climbing over them like small, perfectly spherical hills.

I call Seh back, laughing. “Bowling ball garden?”

“Yep.”

“??????”

“Yep.”

Along the wall outside the kitchen door is a bench with pots of cacti and orchids. My breath catches when I see the burgundy cymbidiums. I raise my hand to my chest, where my new tattoo of those same cymbidiums cascading over my shoulder and chest has just recently healed, but is still fragile. I rub my fingertips against the petals inked just above my heart.

Jeff comes outside and I reach for his hand, neither of us saying a word. We might shatter.

After one more round of looking again in the house. Lisa and Seh decide that the best strategy is to drive back to LA with our car filled with all the paperwork we can carry, to sort over the next few weeks. Lisa packs the dark red cherries in a bag to eat on the road. We hug Timer, who will be picked up soon by a friend. 

There’s a giant cactus on the side of the house, taller than the house. “They brought it as a clipping from their house in Venice.” Jeff says. It’s a marker of time. I didn’t realize they’d been away that long.

Nancy has been dead 30 hours. Mary has been dead 24 hours.

I walk around the house one more time.

There’s a hummingbird feeder outside the kitchen window. A few years ago, hummingbirds nested in the yard. Nancy spent so much time quietly nearby that the birds had started to come to her, landing on her shoulder and in her hand, and then hovering next to her and flapping their wings through her silver hair so it looked like she was lifting up alongside them.

After

The next few days are a blur as we sort through boxes of documents and try to figure out the passwords to phones and iPad. On a call with Seh, Lisa says she found paperwork about a De Soto that may or may not have been sold. “As in, a car?” I ask. “Is there anything else?” Seh and Lisa both tease me. We can’t stop the delirious laughter, just like the queer camp of hospital bedsides 30 years ago.

Four days after they died, POZ magazine ran an article about the ongoing underrepresentation of women in HIV clinical trials. One of the early national ACT UP campaigns was fighting for the inclusion of women in clinical trials. Mary and Nancy both worked on that campaign, not only for representation and inclusion, but for fully informed consent for all people, especially women, people of color, and poor people who might have less experience and historical success at advocating for themselves in their medical treatment. Mary had found out she was HIV positive while pregnant and was given such large and toxic doses of AZT, the only HIV treatment at the time, that she lost 50lbs during the course of her pregnancy. I imagine how they would talk about that article: “Can you believe this shit? Well, at least people are still talking about it and fighting.” Nancy might say. “Yeah,” Mary would say in response, “those pharma Fuckers.”

I hear their voices all the time. Sometimes in my head, sometimes outloud. We finally broke into their phones and start sorting for more documents and contact information. Seh can access things remotely, and I start thinking of her as Sisyphus as every time she tries to clear out their email accounts they just as quickly repopulate. And we still haven’t found copies of the trust.

One afternoon entering my house from my clinical practice, I hear Mary’s voice. I can’t make out what she’s saying, but I’d know the sound of her laugh anywhere. Lisa has Mary’s phone out to look for a contact and has gotten distracted by Mary’s videos documenting their lives, clips of Nancy ranting about politics, and playing with Timer.

Their daughter and her partner drive down to their house and keep sorting files we had missed. One day Seh calls us ecstatic because they finally found the trust. “Good news, right?” I ask. Seh is laughing, says “Yes, but listen to this: Medical power of attorney—the line is Mary gives control to Nancy, and in the absence of Nancy, to Ferd. Then Nancy gives control to Mary, and in the absence of Mary, to Ferd.”

We’re both laughing, speechless. “So. Ok. So,” I start, trying to piece it together, “That would have all made sense, once upon a time, but…”

“A long fucking time ago.” Seh says.

“They never updated it?”

“Apparently not.”

Ferd Eggan died in 2007. Mary’s name was uncrossed out on his tattooed arm when he died.

In the ACT UP years, during overwhelmed and delirious nights between hospitals and hospices, we sat around backyard fire pits, living rooms, and on the beach making promises: If you go first, I’ll take care of things for you… Girl, if you go first, I want your art and your archives but don’t make me deal with your mess…. Yes, of course I’ll make sure you’re cared for the right way and don’t suffer... .No, we won’t leave you alone… Yes, this is what family does….

 

And now here we are again. Still family. Always family. Easy between all of us, Seh and Lisa and Jeff and I checking on each other, sorting through the lives of our dear ones, still not believing their absence.

I can feel how alike Lisa and Seh are, the surety with which they handle the all the necessary tasks, make sure we’re all fed and tended to, and keep each other laughing. Nancy was like that as well. Butches not in competition, but in collaboration. “You do have a type,” Mary said to me when I first introduced her to Lisa. Mary and Nancy had spent years chasing Seh and I away from each other. “What was that all about, anyway?” I finally asked Nancy a few years ago. “We just didn’t want you breaking each other’s hearts,” she said, “we had to protect our family.”

Some heartbreak we can’t protect each other from.

But we try. We always tried. As we sort through their phones and emails, we discover that they were emailing and texting doctors about being profoundly in pain, and getting frightening results to medical tests, the same days they were texting us that they were fine.

In the week after they died, several queer clients in my psychotherapy practice all talked about the sense that queer elders are dying and we’re losing them faster than we can capture their stories. A queer therapist I mentor was reading Frantz Fanon, and brought in a quote: “Today I believe in the possibility of love; that is why I endeavor to trace its imperfections. Its perversions.”

On World AIDS Day 2021, the ACT UP/Los Angeles Oral History Project (https://www.actupla.org) was launched. Mary and Nancy had been a part of the committee of five ACT UP veterans who conceived of and began the project whose mission is to document the accomplishments and campaigns of ACT UP/Los Angeles as a collective, as well as to preserve the stories and experiences of individual members.

When I talked about it with Mary and Nancy, they said they were clear that their job was to document the political and organizational history. “But,” Mary said to me, “you’re the poet and writer. Your job is to document the family.” “Tell our story. All of us, how we love each other.” Nancy said. This conversation was over dinner, more than a decade ago. “It’s a love story,” Mary said. “All of us. We’re a love story. Promise you will.”

When I started submitting my memoir for publication (now under contract at Duke University Press), I sent a copy to Nancy and Mary. Nancy, according to Mary, locked herself in their house for three days while she read. Mary said to me “I’m afraid to read it, I’ll be embarrassed.” “Nah,” I said back. “You won’t. You’re the heroes of the story—you and Nancy and Jeff.” “Then I don’t want to jinx it,” she said. “I’ll wait until I have a hard copy in my hand. And we’ll throw you a reunion party book launch,” she promised.

How many promises did we not get to keep? We used to say, Until the cure. That was shorthand for our promise of forever, because we always knew there wouldn’t be one. Even if there was prevention, which there now is, the survivors would be left to die out, whether from  symptoms secondary to HIV infection and long-term medication, or just the ways either of those things seemed to accelerate aging.

We talked about it in the same conversation as Reparations for the descendants of slavery. “It was such a crucial political move,” Nancy said, “the understanding that the harm continues, that the descendants are also harmed, that the need for Reparations is broader than just the body it happened to.” “That’s why they’ll let us die out,” Mary said. “There won’t be Reparations for those of us exploited by clinical trials and government neglect.” We knew she was right. She knew it as someone who barely survived a clinical trial dosing of AZT, and as the granddaughter of a grandmother who survived being forced into boarding school where Native kids were kept from their communities and cultures. “That was true for Japanese Americans, too, wasn’t it? That they waited for people to die? Your grandmother was still alive, but your grandfather had already passed?” Nancy asked. She was right. More than 120,000 Japanese Americans, including my family, were incarcerated during WWII, but by the time Reparations were finally paid, and only to direct survivors, only 82,219 people were still alive who had been incarcerated.

Two weeks after they died, we got copies of their death certificates. On Nancy’s death certificate, her marital status is “Married.” A few hours later, on Mary’s death certificate, her marital status is “Widowed.” That fast, we lose everything.

How do old queers die? What do old queers die of? MaryandNancy. One inseparable unit of ferocious love and devotion. To each other, to their family, to making the world a better place for all of us.

Some people have wanted to know how Mary died. But I don’t think that’s the correct question. I think the question is how did she stay alive as long as she did? In the last few months of their lives, Nancy was struggling to recover from a broken shoulder and wasn’t easily able to care for herself. She depended on Mary for more basic care than she had needed in the past. Mary’s health was precarious, the stress of 30+years of surviving HIV, having survived addiction and incarceration and public service and the deaths of most of her cohort. They told me to tell the love story of all of us. This is what I think happened: I believe they stayed alive for each other, and for those of us who were lucky enough to be loved by them. By sheer force of their will. For as long as they could hold on. And then they couldn’t hold on.

We haven’t cried yet. Not really. There’s still too much to do. But I came close, looking through Mary’s phone one early morning when I couldn’t sleep. I found a video of Nancy dancing, Laura Nyro playing in the background, and then Mary’s voice from behind the camera, laughing and saying “I love you,” and Nancy smiling back, dancing, maybe in pain, but smiling, then laughing.

Until the cure. We said it a lot, back in the early years. We knew it wouldn’t happen, but we fantasized about it. And what did we fantasize would happen, after? That we would be free to love each other without this particular kind of terror and grief that comes from losing each other all the time? I don’t remember when we stopped saying it. Maybe it was decades ago. But we said other things. We said family. We said always. We said forever. We said for the duration. Nancy said I promise. And Mary said Love you. Mean it.

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Keiko Lane is an Okinawan American poet, essayist, memoirist, and psychotherapist writing about the intersections of queer culture, oppression resistance, liberation psychology, racial and gender justice, HIV criminalization, and reproductive justice. Her writing has appeared most recently in Queering Sexual Violence, The Feminist Porn Book, The Remedy: Queer and Trans Voices on Health and Healthcare, TheRumpus.net, TheFeministWire.com, and Between Certain Death and a Possible Future: Queer Writing on Growing Up with the AIDS Crisis. Her memoir about AIDS, art, and queer chosen family is currently under contract with Duke University Press. She is a long-term survivor of ACT UP and Queer Nation. Go to www.keikolanemft.com for more information.

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