Author’s note: The Pox Lover is a 1990s memoir based on my intermittent diaries of the decade. During that time, former POZ columnist Kiki Mason was a close friend and we worked together to research and advocate for access to investigational treatments for HIV-related cancers, including Kaposi’s sarcoma. Kiki died in 1996 just before the advent of more effective protease inhibitors. He’s remembered as a talented writer with a sharp wit, and an AIDS activist who broke open doors for others battling both HIV and cancer. Click here for more details about a memorial event to honor Kiki and other AIDS journalists.
The sounds of explosion begin from somewhere far off in my sleep. I think I’m in Haiti, then I’m half-awake and the French are celebrating their freedom again. Outside my window the Eiffel Tower is again a shining star lit like a Christmas angel. Beyond my view I imagine the Seine smiling as only a river can smile, long and sinewy and generous, licking the taste of sulfur and gun powder that drops into her water from the fireworks that have begun.
When I lean over the apartment banister, I see giant irises moving toward me: green circles inside red; opium poppy visions. I think virus, virus, virus, seeing a giant projection of what is happening in my friend Kiki’s body back in New York. A boy, Kiki. I call him Joan, a pet name, after Joan Crawford, his idol and muse. Because he tries to live up to her famous ultra-bitch persona.
The giant, white macrophages are getting bigger, too big, and cancerous, the cells falling apart from within, leaving holes in Kiki’s blood. His body is being ravaged. In the sky, the drama of his viral battle is being played out, the fireworks exploding, fading, traces of ash.
When I hear the whistle of the dropping fireworks bomb, I imagine Kiki’s mind exploding from inside, over and over again, his pain glittering. Another white flower blooms in the sky, trickles down like the falling tail of a kite, and slowly fades. I can barely remember what it looked like.
Will I remember Kiki if he dies? Will I think of Johnny? How often? Will I bring Aldyn with me on my walk later tonight? Will his voice pierce me as the voice of this singer, Barbara, is now doing? She’s making me remember Aldyn is dead and the virus won.
Only hours ago, Kiki and I were talking on the phone. He’s just started taking the newest experimental drug for cancers linked to AIDS. Daunorubicin. It uses a relatively new technology, liposomes, that encase the drug in a lipid, allowing it to more easily cross membranes, enter cells, and be delivered into a tumor or infected tissue. A little chemical smart bomb. But the drug is still hard to get access to—read: exorbitantly expensive and not covered by his fancy comprehensive health insurance. Too new, his insurance company told him; we’ll wait for more data.
Last month, he threatened to publicly broadcast his own liberation day parade, to go on television and allow close-ups of his ugly body and scarlet Kaposi’s sarcoma lesions, to show people how ugly this disease has made him feel, how criminal it is that the drugmaker hasn’t rushed this drug out to the market. To become his own one-man Action Jackson media campaign, like Aldyn did.
Truth be told, Kiki’s been arm-twisting me to go after them: daunorubicin’s manufacturer. He’s been putting pressure on them through the media, through his own writing for the gay press. Playing his part; creating a major drama. A Tennessee Williams high-southern-drama moment, full of hysteria and pleading on his part for immediate compassionate use access to the cancer smart bomb; not just for himself but for others with KS, like Johnny, who aren’t responding to the existing arsenal either.
Smile for the cameras. These are the moments when being a journalist has its advantages. People either seek exposure or want to avoid it. The drug companies have had a hard time ignoring Kiki in his high-southern-bitchy Crawford moments, holding court for the press. He’s organizing his own small army of Kikis and plans to dog health officials and their potential allies: the doctors planning clinical trials of the drug. That’s the data we need so urgently to get the drug approved by the FDA—the next step before marketing and broader access. It can take months—even years.
Kiki may get into the first trial, but not the second, which is already planned. He’s organizing others who are ready to be prodded and purged, to be guinea pigs in a trial, to religiously take a chemo-toxic drug that might not work, that has known and clear side effects. The drugs will cause him to lose his lovely, swept-back golden mane; his pride—the last thing a southern belle wants to lose. All this for the chance—the prayer—that it might reduce internal lesions of KS that are pressing on some internal organs, including Kiki’s prostate. A painful swelling that makes it urgently necessary to be closely tethered to the bathroom like Johnny has become of late.
But Kiki won’t go down without a proper, all-fists-flying fight. I talked to him about how the French right wing and the drag queens both claim Joan of Arc as their heroine. He’s channeling two Joans now: himself and Crawford—the moral heroine and the righteous bitch—and charging forward.
And now, I see, he’s won. Score one for Team Kiki.
For now, he clarified, spelling out a longer war that looms around fast-track access to daunorubicin. He’s been given a short-term compassionate dose for himself—enough to see if the drug makes a real difference—but no longer-term commitment from the drug manufacturer or trial. Still, the drugmaker is on the alert, clearly aware that exposure of Kiki’s elephantine, blackening legs on national news would be a possible public-relations disaster. It might scare away the important potential investors at a time the company seeks them, at the preapproval stage, armed with some promising data. Data that spells possible billions in sales and profits in the future. That’s what they really care about, Kiki told me yesterday. Who cares about my fucking balls?
I’m distracted from this thought as the entire sky goes deep red pink—the color of stained tissue under a microscope—then slowly bleeds and dissipates to the muted pink red that’s left when you press fingers on closed eyelids, hard. That gives way to blinking white lights when you open them again. A lingering pale red that now outlines two small white clouds by the Eiffel Tower. More metaphors come: The red like a stain of blood seeping through a white shirt. I’ve seen it, in Haiti; I’ve held people shot in the stomach, the chest, with blood spurting like a small fountain, or slowly spreading into a wound like that. A pale- to deeper-red stain like a sunset you want to hang on to, that’s fading fast now, leaving me with the echo of scattershot explosives in my ears.
To my right, four big searchlights crisscross the sky and I think, You’re looking in the wrong place for your heroes, you French leaders. Look down; shine your light behind you, over there toward the Place de Clichy and the flea market, where Oui, another dying boy, another of your patriot sons, lives with the knowledge that he probably won’t get access to daunorubicin. They’re even further behind in France. Like Kiki, Oui’s pale, thin body is pockmarked like the victims of earlier plagues.
KS, the pox stigmata of our time.
I’ve gotten an update about Oui from Belle. Everyone’s afraid he’s going to die very soon. The medicines aren’t working; he’s so far gone. It’s something he’s not afraid to admit to me or anyone else. At ACT UP–Paris, he’s been a cheerleader, a leader, a media spokesman for HIV drug access. And, like Kiki, Oui has lost the ability to be polite. He’s upset and desperate. But he’s gotten so thin and weak that it’s not possible for him to make the trip to the United States, to protest-beg for a drug that many of his American gay friends can’t access either. I’ll have to go and see him this visit; he won’t come over here, to Belle’s house.
We spoke last night on the phone. I’m so sick, Anne, and it makes me so sad. Oui has none of Johnny’s bitterness, but I feel it for him: the sharp sense of betrayal, the pourquoi moi?—why me?
Pourquoi toi, indeed. Pourquoi Kiki? Life’s absolutely not fair. Kiki’s balls are aching to explode. He’s in pain all the time. He looks grotesque and he knows it. Kiki, a man who loves beauty, who loves drag, who loves what’s feminine in himself and in other men. It’s not fair and the drug companies have made it crueler. The system of profit that we rely on to heal ourselves is so broken, so craven. We have to take them on. We need affordable, lifesaving drugs for Kiki and Oui. We need them yesterday already.
I’m overdue to be back in touch with Théodore and the Port-au-Prince exiles. Since my last visit to Paris, Haiti’s come flooding back into the global news. The political chaos is ongoing, as are the extrajudicial killings, but elections are being planned. I imagine Théodore is actively involved here, organizing the exiled community. I wonder if his family has been able to join him by now. He’s such a pusher, such a doer; I can’t imagine the French authorities not relenting, just to get him off their backs.
I’ll have to pass on his name to the producers of two American television programs who’ve called me, asking for an opinion piece on the possibility of a U.S. invasion of Haiti—something that could happen in the coming week. If it does, I’ll be ready with my comments. And I’ll try to get Théodore a little coverage too—his case, the plight of the Haitian political exiles. But I’m not rushing over to Haiti. I’ve had enough ambulance coup reporting for the moment, thank you very much.
While I was watching the giant-pink-flower fireworks blossom and fade earlier I wondered if Théodore was watching them too, from his amazing view in Montmartre. If he put his fingers in his tortured ears, unwilling to be reminded of what could be happening at home tonight, in Haiti. We’re all veterans of phantom wars, aren’t we?
Inside the apartment, I hear Belle inside, laughing, on the phone with a friend. Lighten up, I remind myself. You’re in Paris again. With Belle. Everybody’s still celebrating. Go have a glass of champagne. Amuse-toi, as Papou would say.
Excerpted from The Pox Lover: An Activist’s Decade in New York and Paris by Anne-christine d’Adesky. Reprinted by permission of the University of Wisconsin Press. © 2017 by the Board of Regents of the University of Wisconsin System. All rights reserved.
The Pox Lover is available via local and online booksellers.
Book Description: The Pox Lover is a personal history of the turbulent 1990s in New York City and Paris by a pioneering American AIDS journalist, lesbian activist, and daughter of French-Haitian elites. In an account that is by turns searing, hectic, and funny, Anne-christine d'Adesky remembers "the poxed generation" of AIDS—their lives, their battles, and their determination to find love and make art in the heartbreaking years before lifesaving protease drugs arrived.
D'Adesky takes us through a fast-changing East Village: squatter protests and civil disobedience lead to all-night drag and art-dance parties, the fun-loving Lesbian Avengers organize dyke marches, and the protest group ACT UP stages public funerals. Traveling as a journalist to Paris, an insomniac d'Adesky trolls the Seine, encountering waves of exiles fleeing violence in the Balkans, Haiti, and Rwanda. As the last of the French Nazis stand trial and the new National Front rises in the polls, d'Adesky digs into her aristocratic family's roots in Vichy France and colonial Haiti. This is a testament with a message for every generation: grab at life and love, connect with others, fight for justice, keep despair at bay, and remember.
About the Author: Anne-christine d'Adesky is an investigative journalist and documentary filmmaker who reported on the global AIDS epidemic for New York Native, OUT, The Nation, and The Village Voice. She received the first Award of Courage from amfAR, the Foundation for AIDS Research. She was an early member of ACT UP and cofounder of the Lesbian Avengers. Her books include Beyond Shock: Charting the Landscape of Sexual Violence in Post-Quake Haiti, Moving Mountains: The Race to Treat Global AIDS, and a novel set in post-Duvalier Haiti, Under the Bone.