Denying AIDS: Conspiracy Theories, Pseudoscience, and Human Tragedy

Seeking Stories of AIDS Denialism

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Wednesday, July 1, 2009

"Speaking in Tongues": An Essay on AIDS Denial by John Boucher

I stood in the doorway waiting for ten minutes before I went back to see who he was talking to. I listened in the hall at the door to his office. I could hear him saying the names of his four brothers and one sister. I could hear him asking about snow and the vegetable garden. I heard him say, “Mama, I’ve got cancer.” I waited for Rex on our couch. We had picked it out as our third anniversary present to each other.

When Rex got off the phone he found me waiting for him on our couch. The couch we picked out / the couch we made love on / the couch we watched TV on / the couch we read to each other on / the couch we fought on / the couch we had our weekly check in with each other on / the couch we almost broke-up on / the couch I would wait on with my parents, to go to his funeral. The couch I finally had to throw out.

When Rex found me sitting on our couch, he sat beside me and my arms gently went around him. I hugged him; his hot skin and tears touched my cheek. It had been six years since he had spoken to his mother or anyone in his family, all his choice. Rex was stubborn. There had been a mix-up about who was going to drive to St. Louis to pick him up on his last scheduled visit. His sister Ruth was supposed to, but plans changed, and Rex’s brother was going instead. For reasons never fully explained, Rex exploded at this. He called off the trip and tore up all photographs of his family. He never went back home and he never spoke to them again. If they called, he hung up. If they wrote, he threw the unopened letters into the trash. A couple of years into the standoff, his mother sent him a birthday card with no return address. He opened it by mistake. It was a religious card. Rex exploded in anger:

“Stupid fucking bitch! I told her not to contact me; she’s dead to me. Now she sends me a Jesus birthday wish. Fuck You, Ma. She wants to make up—I’ll show her. “

Rex went to a gay card-shop and found a card with two naked muscle men in leather arm bands and combat boots, one twisting the other’s nipple with a pair of pliers, while the other jerked-off and came. He sent it to her with a brief note:

Dear Mother,
This card is as inappropriate for you, as your birthday wish was for me.

If you don’t know who I am by now—Fuck Off Bitch!

I told him not to send it.

“Don’t get into it. It’s none of your business John.”

He sent the card. That was the end of any contact from Springfield, Missouri. But on his Birthday around noon, after six years of silence, Mrs. Phyllis Nelson called her son Rex. He answered the phone and spoke with her for forty-five minutes. Rex told her the truth about what was happening to his body. He told her about the lymphoma, the chemo, the weight loss, and his still insistent belief that the HIV virus was harmless and played no part in his illness.

As I held my crying Rex on our couch, I was struck by a series of wonderings. What if his doctor’s appointment had not been rescheduled for later that afternoon? What if we had left for his Birthday lunch five minutes earlier? Phyllis, Mrs. Poindexter, Mrs. Nelson, MeeMaw, Ma, the fucking bitch—would she have left a message? Probably. Would Rex have returned the call? No. No, he would not have. It was hearing her voice, at that moment in time, when he needed her, that did it. It was the beginning of coincidences, always bittersweet.

Two months later Rex’s mother and sister Ruth came to Los Angeles. They stayed five days. On their last night they took me out for dinner to a gay restaurant in West Hollywood. We sat outside on the patio; it was unusually balmy for mid-January. I spoke only to his mother while Ruth sipped her two beers and studied her map of the movie stars’ homes. I sat directly across from Rex’s mom. The distance was two feet but in reality we were two thousand miles and fifty years apart. I stared directly into her eyes as I spoke; I knew this would be my only chance. I never said her name and she never said mine. I didn’t know what to call her and she could not acknowledge me. I couldn’t call her Mrs. Poindexter. She hadn’t been that name in decades. Mrs. Nelson seemed so formal, yet Phyllis seemed to presume, and she didn’t look like a Phyllis anyway.

A woman in her mid 70’s with tightly permed hair dyed a nondescript color, somewhere between blond, brown and red. She wore polyester stretch pants, orthopedic shoes, glasses, and no makeup, not even lipstick. This was her first trip out of Missouri, to watch her son die of AIDS, in Hollywood.

The whole time they were in Los Angeles they only referred to it as Hollywood. I think it took the edge off. After all they had not seen nor spoken to Rex in six years. Now it was too late. The things he always wanted from them were impossible now.

Rex was bed bound at this point and eighty-nine pounds, fed and hydrated intravenously. He ate nothing those last two months. I tried to get him to drink Gatorade mixed fifty-fifty with water. He raved about it to the nurses, “John had this great idea”, but the taste was too strong. Chemo had done that. Even though Rex told the nurses how wonderful his Gatorade cocktail was, and how I’d thought it up, he only took a sip.

The tubes fed and watered him, like some exotic talking beige-plant, which kept shedding its’ hospital gown like fall leaves. He always wanted to be naked. He would get so hot. Even the flimsy cotton gown was too much—he would claw at the ties and tear it off. The Nurses kept his door shut and also pulled the curtain, so visitors, volunteers, and the hospital workers, who came by hourly, would not see him in his birthday suit. That small space of linoleum between the hospital door and the curtain gave Rex time to throw a blanket over his penis and become presentable.

Ruth and their mom sat in the two chairs and talked with Rex about recipes for zucchini bread, and growing vegetables from seeds they had stolen when Rex and Ruth were children. They would steam open the seed packets they sold door to door, to earn a little extra money. They would remove some of the seeds, then close the envelopes back up, and sell them. They were too poor to buy the seeds.

I listened to this sitting on the windowsill. My back was against the cold winter glass, tinted a brownish green and filtering the gray sky. As I sat on the ledge, my back to the glass, I watched Rex, his mother and sister try to connect their lives that had unraveled. Food–which Rex no longer ate—was their only common ground. Food was all they had now.

At dinner at the French Market I sat with his mother and sister Ruth. Ruth ate her chicken stir-fry and drank her beers. She paid for dinner and tipped the waiter one dollar for all three of us, a big tip by rural Missouri standards. We sat under the striped patio awning, alone. I ate almost nothing at dinner, a few grapes. Ruth drank her beers and looked at the map of the movie stars’ homes in the Hollywood Hills. She said in her twang, “We’re going drivin’ in the mountains in the mornin’––before we visit Rex”. “What mountains?” I asked. She gestured toward the Hollywood Hills. “They’re mountains to us Honey. Missouri’s flat.”

I sat across from Rex’s mom, never saying her name, and told her the story of his illness staring straight into her eyes. I told her everything except the conversation Rex and I had, in the hospital, in late November 2003, after his birthday but before Thanksgiving. The day Rex told me we’d made a mistake. A mistake, which would cost him his life. I was wearing my hospital visitor, preppy, gay housewife drag. A green button down shirt from Eddie Bauer, Rex had bought it for me because it matched all the shades of green in my eyes. He’d picked it out when we were buying clothes for him to go to Nashville, to sell his songs, to give us a future. “I’m doing all this for us honey. If I can just get one hit we’re set for life. Look at Alan O’Day. He and Yuka live on “Undercover Angel”.

I thought of the song and sang the lyrics in my head. “Undercover Angel, midnight fantasy. I’ve never had a dream that made sweet love to me.” Alan and his Japanese wife live in a nice house in West LA. They have a good life—and all on “Undercover Angel.”

But Rex came back from Nashville not with a future, but the promise of one. Three months later he got sick. Three months after that and we were in room 4812 at Cedars Sinai Medical Center, having “the talk”.

Rex was bed-bound and although he no longer ate, the doctors could not stop his diarrhea. A constant flow of green bile flowed from him into a clear plastic bag that hung from the chrome rails of his hospital bed. A tube was anally inserted into Rex, the other end into the bag. Every hour a nurse capped the tube, emptied the bag, measured and recorded its contents, and flushed Rex’s bile down the hospital toilet. The doctors were monitoring his fluid loss. They were trying to see if they could control the flow. They never could.

I stared into Rex’s eyes, the color of cornflowers. I didn’t look at the rest of him, just his eyes that burned into you. He was intense, one hundred percent full tilt all the time. I perched on my ledge, the November glass against my back, my penny-loafers en-pointe. My fingers clutched the granite lip of the sill. I liked the cold, hard, unyielding stone, and my fantasy that the glass against my back would break, and I’d plunge to the hospital garden below. I wanted an earthquake to open the earth and swallow Cedars. I didn’t want to have this conversation.

“Sit down Honey.”

I stared at the peach pink linoleum trying to decide what color to call it. Apricot? To yellow. Peach? To orange. Some fruit, some dense sticky-sweet, exotic fruit must be this color. Mango? Still to orange.

Rex spoke:
“John, I think we made a mistake. I think the HIV dissident movement is wrong.”

Anger flooded my face; I felt it burn. My mind raced:

Now you change your mind? Now when it’s too late. Now you want to leave the HIV Dissident Movement. You dragged me into this. You almost left me over it. Now, with a tube up your ass, you want to change course!

I stared at the human plant before me. I couldn’t say this to him. I wrote the word asshole on the roof of my mouth with my tongue. I stared down at the pink fruit linoleum and at my cordovan penny-loafers. I looked up at Rex’s blue eyes. The blood drained from my face. He was so sick. I’d never seen anyone this sick. I thought of all the people I watched die from AIDS when I worked at the Hospice. I never saw anyone like this. I couldn’t be angry. I looked instead at the peach fruit floor under my feet. I wanted the glass to break; I wanted to die before Rex finished this conversation.

Rex continued:
“I’m going to start the drugs. I think it’s too late for me. I want you to start too. Have you been taking them––secretly?”


My face was red hot with anger. I wrote the word asshole on the roof of my mouth again. I thought about Christine Maggiore the leader of the HIV dissident movement and her filmmaker husband Robin. Rex always said Christine was his heroine; she called him in the hospital urging him to stay the dissident course and not take the drugs. I even told Rex to call her, when the doctors were pushing him so hard, and he didn’t know what to do. Now reality was staring us in the face and he was willing to look at it, to change his mind, to say he was wrong. I didn’t want to look; I didn’t want to change my mind. I wanted to pretend Christine was right, and HIV doesn’t cause AIDS. I wanted to pretend Rex would live. I wanted the glass to break behind my back. I wanted to die first.

Rex continued:
“Go home and go on the web, and print out a list of all the HIV drugs, and their side effects, and bring it back to me after dinner. I want to discuss my options, with my doctors in the morning. “

I felt nothing as I left my perch. I saw myself as if from above walking the peach floor toward the beige talking-plant and kissing it goodbye.

As I left, Rex was dialing his little golden cell phone. He had it on speakerphone and I heard it ringing. He covered the mouthpiece and mock whispered: “I’m calling Robin Scovill. He can’t keep that tag line he has for me in his movie, The Other Side of AIDS — ‘Rex continues to live in health drug free.’ –– he’ll have to change that”

Rex chuckled ironically; then covered the mouthpiece again when he heard someone say “Hello” on the other end. “Print those things out for me, OK Honey? Bye.”

I left the room staring at the peach waxed linoleum.

I left this part of the story of Rex’s illness out, the night I had dinner with his mom, and talked to her over two thousand miles of cafĂ© table. I told her everything else that had happened in the six months of his illness. I wanted her to know I cared, that I loved her son. I wanted her to know I tried. When I had finished my story, this Pentecostal mother of seven, looked up and spoke to me, for the first and only time:

“The church I go to, they speak in tongues, handle snakes. They say they talk to God, but I think they just make it up. My new husband, he likes to go. I go along. I keep my mouth shut.”

She never said my name and I never said hers.

A month after Rex died I sat on our couch and called Ruth. I told her I was going through Rex’s things. I said to tell their mom she could have anything she wanted. I’d send it on to her in Springfield. A week later Ruth left a message:

“Hey John, Ruth. I spoke to my mom and she said…she said, what she’d really like is a picture¬––a you both. You and Rex. She said, when you spoke to her at that restaurant; it was just like talkin’ to married people. So if you can find a nice picture, send it to me, I’ll see she gets it.”

I went through Rex’s camera and the last picture stored there was of us. Taken at my dad’s birthday party, two weeks before Rex got sick. It was our last picture together. I sent it on to Springfield, Missouri.

NOTE: “Speaking in Tongues” was published in Washburn University’s Inscape Literary Journal and won the Best Nonfiction Award. The essay is reprinted here with permission from John Boucher. Rex Poindexter tested positive in 1996 and was featured in Robin Scovill’s AIDS denialist film “The Other Side of AIDS”


  1. Back in 2001, when I consulted with "Sexy Rexy" on his songs, he was full of energy & songwriter dreams.

    Later, when I visited him in the hospital, his energy was waining, but his dreams remained.

    After he passed away, John thanked me for helping Rex, & shared the above article with me. I cried when I read it, at the tragedy of dreams unfulfilled, and love lost.

    I'll always remember him. Rex was a songwriter.

  2. Alan
    Thank you for your comment.
    I cried too.

  3. Wow, very sad. I'm glad John found the strength to share his story. I find it sad that Rex wasn't able to face the truth until it was too late, sadder that denialists like Maggiore continued to encourage the self-destructive mindset, and sadder still that this is not the last time such a scenario will be played out.

  4. Thank you, Seth.
    This is the second time I have read this story. This is the second time I cried all the way thru it.
    I found this story on~line about 6 months ago on John's myspace page. I wrote to him to tell him how much I enjoyed it and how incredibly well written it was. I also asked John if I could post it at my blog. A real ass~hole move, I know. But I thought it should be read by everyone involved in this AIDS dissident movement, no matter what side they are on. John said thank you for the compliment, but hell NO I could not print it. He reminded me we did not even know each other, and he did not trust my intentions.
    I supplied a link to my blog and we corresponded for a couple of months. John informed me that he was submitting the story and I told him I was sure it would win any and everything up to and including a Pulitzer!
    John told me he liked my blog and that I was brave and strong Brave! This coming from the man who endured his lover's death at the hands of these denialists, and was ultimately betrayed by the very ones he considered friends, including Christine Maggiore.
    John had said I was brave and strong to take their shit and give it right back. However, I think it is John who is truly strong to be able to take such amazing pain and turn it into such beautiful art that may help someone else in Rex's shoes before they reach the no turning back point!
    Bravo for John Boucher and may he go on to win that Pulitzer!

  5. I also wonder how often the "Other Side of AIDS" site updates its Meet the People section. It still has the following for Maggiore:

    "Christine Maggiore has lived in health without the use of AIDS drugs since testing positive in 1992. She resides in Los Angeles with her husband, filmmaker Robin Scovill, and their healthy children ages six and two. Both children were born without medical intervention and were breastfed."

    Is it not worth changing for the sake of accuracy and truth? It seems a tad dishonest.

  6. Here's a good, sober article about the many problems with AIDS science:

  7. Thank you all for your comments and to Seth for posting my essay. I hope it helps. And a great big hug to Alan O'Day. Thank you all.

  8. John,
    Thank you for sharing. I'm sure it couldn't have been easy.

    That article is a load of crap aimed at fooling those with no knowledge on HIV. I see it worked. Can you name a few errors in this article or did you just swallow it whole? Tell me please, how many obvious errors can you name?

  9. Bill,
    Peddle your jerk off spluge on another thread.
    How about reading "Speaking in Tongues" and offer up a human response. Or has the humanity been numbed out of you along with your sense of right, wrong and the truth?

  10. That is a wonderful, honest and deeply humane piece of writing, John.

    To remember with such clarity, insight and love in the way you have done must have been painful and difficult work. But remembering is such important work, especially now, so thank you.

    Bill, if you want to discuss that silly article feel free to do so as a comment on my blog. I'll even start a thread for you. Just not here, okay?

  11. Poodle, enlighten us please

  12. JTD
    I have seen you comment on Rex elsewhere. Particularly about how he had been misled by the AIDS Deniers. I appreciate your commenting here. I also appreciate the comments of Snout, Poodlestomper, and Alan. And Thanks to John for allowing me to post his story and for visiting this thread. John, you have obviously moved us.

    We all know that those with intractable AIDS denial, like Maggiore’s was and Stokely’s is, will not be moved by Rex’s story. They cannot be. But many others will.

    I will be posting more stories of people who were misled by the denialists. There have also been some recent deaths where family members are outraged by the behavior of AIDS denialists, including a story where an AIDS Denier went as far as to call the hospital to tell them NOT to administer antiretrovirals to a patient who was disoriented from an AIDS-related condition and unable to make medical decisions.

    Anyone who asks if AIDS Denialists are actually harming anyone need not look any further than here.

    I was hesitant to post Bill’s comment on this thread out of respect for John and Rex. But I decided that Bill’s callous insensitivity was worth displaying. This blog is all about exposing AIDS Deniers for who they are and what they are doing. Nobody does that better than the likes of Bill. Now Bill should go to Snout’s blog Lets keep this thread about Rex.

  13. I agree. Lets keep this thread about Rex. Bill, if you care to continue your train of (un)thought, move on over to Snouts and I'll be there.

  14. So Rex died of cancer. People without HIV also have cancers. AIDS medication is of no help in that situation.

    Are you saying that AIDS medication prevents cancer?

  15. Anonymous

    If you deny 25 years of solid medical science and if you deny that HIV destroys the immune system and if you deny that HIV causes AIDS... then you can go on believing that lymphoma afflicting a person who is HIV+ is just like any other lymphoma and should be treated the same.

    But if you are not an AIDS Denier then you can learn about AIDS-related lymphomas and how they are treated differently. Lymphoma is one of several AIDS-defining conditions. Lymphomas are the second commonest malignancy in AIDS patients. If you genuinely want to understand AIDS-related lymphomas, visit or

  16. Yes, it is sad that Rex died.

    It was also sad, when Joyce Hafford died from liver failure, while pregnant, taking gobs of Nevirapine and AZT.

    Lymphoma, unlike AIDS, is a real disease. It has existed for CENTURIES before HIV was even a gleam in Robert Gallo's eye.

    None of you scientific idiots know what caused Rex's lymphoma, nor what treatments he took for it. Nobody suggests that lymphoma should go untreated.

    When Seth write "Lymphomas are the second commonest malignancy in AIDS patients," that's like noting the second tallest building in Omaha, Nebraska. In America, AIDS is a trivial disease. It's not even a disease, but a collection of old diseases, all of which can and should be treated.

  17. Bill

    AIDS is "not even a disease, but a collection of old diseases, all of which can and should be treated."

    Who ever said AIDS was a disease? It is a syndrome. HIV infection is a disease.

    I bet you would also say that cancers are caused by carcinogens. No genetic basis to cancers, right?

    So tell me why it is that disseminated Herpes only kills adults when they have HIV antibodies, like Christine Maggiore? And why is it that the incidence of cancer has not changed in industrialized countries since the industrial revolution despite the increased exposure to carcinogens (I learned so much at the Duesberg Aneuploidy Conference, Thanks again Peter).

    There is no logic to AIDS Denialism.

  18. It is so obvious from the comment that Bill is not worth debating/enlightening:
    "AIDS is not even a disease, but a collection of old diseases."
    God, that is so stupid, that only a person who makes that statement would not see just how stupid it is.
    Since AIDS depletes the immune system and leaves the person open for all sorts of diseases, it really does make more sense that he/she should only succumb to the NEWER diseases!! WTF?
    Please, Bill, tell us just what these "new" diseases are that should afflict AIDS patients!
    As ORAC would say, "the stupid, it burns!"

  19. The real question that Duesberg cannot or will not answer is why a specific set of malignancies are seen in AIDS patients (and other patients with immune suppression).

    A hint: they are all associated with viruses. EBV, HHV8, HPV....

    Rex's story also shows that being in denial does not protect you from HIV and AIDS.

  20. Chris, how dare you!? You should know that EBV couldn't cause Burkitt's Lymphoma anymore than HHV8 could be the cause of Kaposi Sarcoma! The only explanation for those is TEH ANEUPOIDYZ!

  21. If anyone wants to have some fun, onecleverkid is at my site, dissidents4dumbees making all sorts of ridiculous statements, like saying that Duesberg did indeed win The Continuum Award for isolating HIV. He/she even provides a link which COMPLETELY shows he is wrong, that Duesberg was turned down. Yeah, OKC is providing links that disprove his arguement, just like Clark Baker does.
    Also, OKC is trying to say that Celia Farber is not racist because of a horrible analogy she made at Baker's site comparing Dissidents to Blacks in the South!
    Drop by and let him/her know how wrong he/she is...although I think I am handling him/her, pretty well.

  22. Hello:

    I will be reading "Speakeing in Tongues" on Rachelle Cruz's online radio show tomorrow at 10 AM, PST. Rachelle and I are fellow PEN USA Emerging Voice Fellows for 2009. There are eight of us in the program and Rachelle will interview me and my fellow memoirist Sylvia Sukop tomorrow. The link is below:

    Please tune in if you like and if you can't make it the show will be archived.


    John Boucher

  23. Believing Aids exists can help, with the use of HIV drugs, prolong life. There is no cure but there is help and hope. A young life was taken before his dreams could be fulfilled. To not feel compassion for the victim and the survivors of any disease, regardless of the origin, is also being in denial. The hurt and pain at watching a love one suffer is almost unbearable. The physical and mental wasting of a person, can be the most trying time for one's true character.