Writings

Lena grasped her 4-year-old daughter’s hands from above and guided her through their art deco living room as she cradled her cell phone in the crook of her neck. She was speaking to a distressed woman who was recently diagnosed with HIV.

“My story is that I contracted HIV at 32 from a boyfriend who failed to mention that he was HIV positive. Minor oversight, the bastard. Anyway, it’s not the diagnosis that’s the problem; it’s the medication that kills. Fifteen years after my diagnosis, I am living well without meds. I plan to keep it that way. You can, too.” Her daughter lost her footing, as she often did, and Lena squeezed her hands to help her stay upright. The cell phone tumbled onto the carpet. Lena crouched down to pick it up.

“Mama? Can I go to Tyler’s house to play?” Seven-year-old Seth appeared with a dripping cherry popsicle.

“Seth, take that back into the kitchen!”

“But Mom, can I?” Seth and his popsicle didn’t budge.

“Yes, go, but finish your popsicle first.” Lena addressed the caller. “Sorry. I’m trying to do too many things at once. Listen, I have to run, but you can learn more by visiting my website at livingwellwithhiv.com. If you have any other questions, give me a ring.” Lena sighed deeply as she pushed the off button and bent down to pick up Olivia. She cradled her like a baby and carefully sank into the post-modern neon orange easy chair. She lifted her Bollywood-inspired shirt and bared her nipple while drawing Olivia’s face up to her breast. Olivia began sucking but then abruptly stopped.

“What’s the matter, my little O?”

“Mama, my ear hurts.”

“Here, take some of mama’s milk and it will feel all better, bunny.”

“Okay.” Olivia started nursing again. Lena glanced at her watch and leaned her head back on the chair. She had 30 minutes until she had to leave for her keynote address at the National AIDS Project conference in West Hollywood.

“Bryce?” She called out for her husband with her eyes closed. She felt exhaustion taking hold of her limbs. She couldn’t give into it. “Bryce? Can you make me a double espresso? I have to get this tired-ass show on the road!” She was happy that Bryce, a film and video director, was home today—between shoots.

She looked down at Olivia whose face was so peaceful when she was nursing. Screw those people who said that Olivia was too old to nurse. Lena knew that mother’s milk was a cure for all of the world’s ills. She would nurse Olivia until she didn’t want it anymore.
Lena was used to living with people’s disapproval; her organization’s mission was as controversial as it gets—claiming that HIV doesn’t cause AIDS.

Bryce and her fancy coffee drink appeared. “Double espresso, Mademoiselle. Can I bring you anything else?” He set it on the mosaic table next to the easy chair. He had made the table out of found objects on the beach—glass, metal, tile, rocks, shells. Lena kissed the air in Bryce’s direction and said, “You’re a godsend, my love.” Bryce ran his fingers through Lena’s brown curls and kissed Olivia on the head. Olivia was too busy nursing to notice.

* * * * * * * * * *

Lena scurried up to the Westin in West Hollywood; she had five minutes to get to the ballroom. There was a restless crowd gathered outside the hotel; she hoped they wouldn’t impede her progress. During a conference in Pasadena, protesters blocked her entrance, and security guards were summoned to contain the crowd.

As she got closer to the entrance, she noticed placards. Oh God, I don’t have time for this. One read: “AIDS is a REAL disease.” Another: “HIV causes AIDS.” “Lena Mackenzie is an AIDS Denialist.” She put on her Jackie-O sunglasses, ducked, and went around to the side door.

When Lena appeared in the ballroom, hundreds of attendees were already seated and there was a low hush. The introducer was standing close to the podium, fiddling with his note cards and necktie; when he saw Lena, his body relaxed, he organized his note cards and he stepped up to the podium. He tapped the microphone several times and began. “I’m pleased to introduce Lena Mackenzie, an HIV positive woman, who is living well. In response to her prognosis, she has become a public speaker and educator for AIDS Project Los Angeles and The Lavos Foundation as well as a founding board member of Women at Risk. A series of conflicting HIV test results in 1994 inspired questions about her diagnosis as well as the AIDS information she taught and was teaching others. A search for answers ultimately changed the direction of her public service and inspired the creation of her organization, Living Well. Ladies and gentlemen, I present to you Lena Mackenzie.”

Applause broke out and a few stray whistles accentuated the roar. When the applause died down, a person in the back chanted, “Lena is an AIDS denialist. Don’t believe a word she says. Lena is an AIDS denialist…” The audience members shifted uncomfortably, murmuring and mumbling.

Lena spoke into the microphone, “It’s okay. He’s just misinformed. I used to be, too. Sir, all I ask is that you hear me out and I’ll address any concerns you have at the end of my talk.” Lena put the entire ballroom at ease.

After the collective sigh of relief, Lena began, “What would you do if you received a death sentence?” She paused and made eye contact with a number of audience members. She continued, “Dig your own grave or fight with every cell in your body?”
I chose to fight. Fifteen years ago, I was diagnosed with HIV and given five years to live. I could have curled up and waited to die, but instead I asked questions. My questions kept me alive and are the reason I’m standing before you today, living well.” Then she asked the audience, “Are you willing to consider that people with an HIV positive diagnosis have a different destiny than the one we are taught to expect?” Some enthusiastic audience members cheered. She continued, “I’m here tonight to tell you that HIV does not cause AIDS.”

Lena continued telling her story and at the end held a question and answer session. A meek woman with bent-over posture and a bowl haircut walked up to the microphone in the middle of the room. She cleared her throat and spoke in a whisper. “What is your position on breastfeeding? I am HIV positive and pregnant. What can I do to keep my child safe? I’ve heard that HIV can be transmitted through breast milk.”

“Please tell me your name.”

“Emma” whispered the woman.

“Emma, first I want to congratulate you. You’re on a journey that will transform your life; you’ll find corners of your heart you never knew existed.” Lena beamed from the podium. “Thank you for having the courage to ask this question. While pregnant, I didn’t take HIV medications and I have never had my children tested for the virus. I breastfed both children and am, in fact, still breastfeeding my daughter. My children have outstanding health. They’ve never had respiratory problems, flus, intractable colds, or ear infections. So, our choices, however radical they may seem, are extremely well-founded.”

Keep living your life; don’t let HIV rob you of the magic of raising a child. Breast feeding is part of the joy. Breast milk is essential for building a child’s immunity.” The meek woman smiled, crossed her hands as though she had received communion and returned to her seat.

The heckler approached the microphone. “I’m Dr. Duke, professor of pediatrics at the Medical College of California. This contrarian view is bad science and simply bogus. Health officials and experts have shown that HIV unquestionably causes AIDS. HIV tests detect antibodies to the virus and are accurate predictors of who is infected.”

“Dr. Duke, thank you for sharing your point of view. The exhaustive research I’ve conducted indicates without question that HIV doesn’t cause AIDS.”

“That’s preposterous! What are your sources, Ms. Mackenzie? Has your research been peer reviewed?”

“I’m happy to discuss that with you, off-line, Dr. Duke.”

“And how can you be so sure your children are healthy if you’ve never had them tested?” Dr. Duke asked.
Lena smiled and backed away from the microphone. Then she bent her head down to the microphone, “The tests are highly inaccurate. In addition to being inaccurate, HIV antibody tests are not standardized. This means that there is no nationally or internationally accepted criteria for what constitutes a positive result.”

“That’s all I have time for. Thank you all for spending an evening with me.” She put her hands together in gratitude and bowed her head slightly.

Lena’s phone chimed just as she stepped down from the podium. It was her husband; she would call him back when she got on the freeway. After the you’ve-got-a-message chime, Lena played the message. Bryce was calling to say that Olivia had a fever and he was putting her down for the night.

As she got on the slowly crawling freeway, her phone rang again. It was her agent.

“Lena, great news. Motherhood Magazine wants to do a piece on you.”

“Fantastic.”

“We’re talking cover story, baby.”

“Wow! When?”

“Um. Tomorrow.”

“I have to check with Bryce, but I’m sure I can work it out.”

“That’s not all…Are you sitting down?”

“Well, yeah, but if this is going to be a shocker, perhaps you should tell me when I’m not driving on a crowded freeway.”

“Well, honey-bun, that would mean never in this city.”

“Okay, Okay. Out with it!”

“I’ll give you a hint. It starts with an O and ends in tens of thousands dollars in book sales.”

“Get out!”

“Nope. We’re going big time, baby.” Lena couldn’t believe it. Although her agent had her sights on money, Lena was thrilled to be able to get her message out to HIV positive women and men who wanted to live normal lives without pharmaceuticals.

“Mel, you’re the bomb.” Lena made kissing sounds in her phone.

“Yeah, you owe me, but we’ll talk about that later.”

* * * * * * * * * * *

When Lena got home, the house was dark; the calm of a household in slumber hung in the air. She crept into her daughter’s room. The dragonfly nightlight lit up the patterns on the walls. She and Bryce had painted Olivia’s walls with cows jumping over moons when Lena was eight months pregnant. She remembered feeling Olivia’s kicks and hiccups when she was painting the stencils. She had said to Bryce that she was growing the princess of hiccups in her belly. They laughed, embraced, and made love under freshly painted moons.

Olivia was curled up with her pink lamb and sucking her thumb. Lena crawled into bed with her, pulling up her shirt and taking off her bra. She positioned Olivia on her chest and belly and snuggled with her, guiding her mouth to her exposed nipple. With her eyes closed, Olivia replaced her thumb with her mother’s nipple. A warm tear trickled down Lena’s cheek as she thought about the HIV positive women who chose not to give themselves to their children in this way. She had to get her message out to the world.

* * * * * * * * * *

Lena was due to leave for Chicago early the next morning to tape the Oprah show in the afternoon. Bryce was on location doing a shoot for the Bank of America. Lena had borrowed her friend’s Salvadorian nanny for the day so she could prepare for Oprah. She was holed up in her office with instructions to absolutely not bother her for any reason.

There was a tap on her door. She felt ire well up from her stomach that was tied in double knots. She thought if she ignored the knock, the nanny would go away. Another more urgent knock.

“Not now.”

“Missus Lena, Olivia fall down.” Lena walked to the French doors and before them, she said, “Pick her up, then.” She opened the door with an acrid look on her face and saw the nanny holding Olivia, whose limbs were draped like a rag doll. Lena felt her forehead; she was burning up.

“Here, I’ll take her.” Lena felt her daughter’s limpness and panicked. She walked to the couch, set her down, and called Bryce. He didn’t answer. “Pick up. Pick up. Pick up!” She called again and again. Finally, he picked up.

“I’m in the middle of a shoot.”
“I know. Something’s wrong with Olivia,” Lena said.

“It’s nothing. She just has the flu or something. It has been going around.”

“God, I don’t have time for this. I have to get ready for my appearance.”

“Well, what do you want me to do?” Bryce was clearly annoyed.

“I have no idea.”

“Lena, I really have to go.” He hung up. In that moment, Lena felt a kinship with all angry working mothers throughout the world. Why is it my problem to handle the kids’ crises AND my work when he can just walk away?

* * * * * * * * *

After visiting the doctor, Lena was relieved to learn that Olivia just had an ear infection that was easily treatable with drops. She put Olivia to bed and poured herself a glass of wine; she had spent the entire afternoon dealing with Olivia’s health crisis, so she had done zero preparation for the show. She’d have to wing it.

* * * * * * * * *

Lena was on the Oprah set in makeup underneath bright lights and surrounded by full-length mirrors. She hated the makeup and hair routine before shows. She was going on to talk about HIV and AIDS, for God’s sake. Did she really need to look like America’s next top model? Look, it’s HIV/AIDS Barbie, she thought to herself. It made her snicker. A perky woman with a headset, wires, and transmitters appeared from nowhere like someone beamed down from the Starship Enterprise and said, “Ms. Mackenzie, 10 until you go live.” Lena’s heartbeat sped up. Millions of viewers would see her if she stumbled over words or didn’t speak coherently or didn’t make her case well enough. Tens of millions probably.

The next time she was aware of anything, she was sitting on Oprah’s couch with blinding light pouring over her. She remembered saying, “The most surprising aspect of my story is that it is not at all unusual—I know hundreds of HIV positives that are living well many years after receiving their own dire prognoses. Contrary to popular claims, what we have in common is not some unique genetic quality, but the ability to liberate ourselves us from unfounded fears and embrace our natural ability to live in health.”
She remembered Oprah asking her pointed questions about the controversial nature of her claims. She fielded the questions beautifully. Lena recalled having to cut to commercial every time she was on a roll. Eventually, Oprah was holding her book up for the cameras and plugging her website.

“You’re a brave woman to have taken on such a formidable enemy, Lena Mackenzie. An enemy that makes skeletons and corpses out of talented, vibrant men and women. Thank you for sharing your story.” She was surprised by Oprah’s candor, authenticity, and charisma.

They cut to commercial again, and Lena walked off the stage to the dressing room. She dialed Bryce. “I did it! I really did it! Can you believe it, baby? I was on Oprah and I didn’t make a complete fool of myself. Our message is getting out. Can you imagine what this will do for Living Well, book sales, and speaking engagements? Mel is going to kiss the ground I walk on! She heard nothing on the other end of the line; she thought the call had been dropped. “Bryce? Bryce? Hello?”

“I’m here…”

“Oh good, you’re still there. I thought I had lost you.”

“Lena…”

“What? You think I fucked up? Did I say something incomprehensible? Please lie, if you have to. Just let me have my moment of glory.”

“Lena…” Something was wrong; she had fucked up and he couldn’t tell her.

“Oh man, here it comes. OK, give it to me straight, then.”

“I didn’t see it.”

“What? Why not? Did you have something more important to do?”

“Lena, Olivia is gone.” Bryce sounded incoherent; he wasn’t making sense.

“Gone where? Bryce, are you OK?” Lena’s heart began to race. A million scenarios popped into her mind. Gone—kidnapped or lost?

“How the fuck could I be OK? She collapsed and never woke up.” Lena leaned against a wall and slid down to the cement floor. She no longer had feeling in her body. This was happening to someone else in a parallel universe.

“Collapsed? Are you sure she’s not sleeping? Did you try to shake her?” Lena’s breathing quickened; panic was spreading from her chest to her limbs.

“She’s dead, Lena. She stopped breathing. She was rushed to the hospital; they couldn’t save…” Bryce broke out in tears.

“Oh my God. This can’t be happening. Tell me this isn’t happening.” Lena held the phone as though it were her lifeline; if she let go she might vanish. The others in the dressing room were looking nervous and concerned. She began to hyperventilate and sob simultaneously; someone had knocked the breath out of her. There wasn’t enough oxygen in the room. “Bryce, how is this possible? She had an ear infection. That was all. How can a kid die of an ear infection?” Tears were streaming down her face; the room was a blur…

“Baby, I don’t know. I don’t know.” They each desperately clung to their cell phones.

“Seth. What about Seth?”

“He’s with Tyler’s family.”

“I can’t make it without her, Bryce. I can’t. It’s not possible.”

“You can; you have to. I need you. Seth needs you.” Lena let out a sound that was part anguish, part rage, part desperation. The wired woman came over and mouthed, “Is everything OK?” All Lena remembered saying was, “No, my baby’s gone” and then the world went black.

She awoke with a cold compress on her head and a lead weight in her heart. Several strangers were looking down at her; a doctor was kneeling and taking her pulse.

“I’m OK.”

“Ms. Mackenzie, we’ve arranged for a limo to take you straight to the airport. You’ll be driven by a hospitality cart to your departure gate.”

“Thank you.” But she didn’t want to go back. Somehow she thought if she didn’t go back, it wouldn’t be real.

* * * * * * * * * * *

The next several weeks were a blur of people appearing with long faces and condolences, presenting foiled covered lasagna and cards with butterflies, sunsets, lilies, and God; relatives forcing her to eat green bean casserole on an aching, empty stomach; friends handling arrangements; nights that stretched on forever; Seth looking neglected and confused; Bryce pleading with her to come to bed; pacing in the back yard until a worn path appeared; Bryce forcing her to take sleep medication that just made her dizzy.

One morning after another sleepless night, Bryce found Lena in the kitchen at 6:00 am, leaning on the counter, waiting for her coffee to brew. He put his hand gently on her upper back.

“Lena, honey, how are you doing this morning?” She looked up at him with vacant puffy eyes and disheveled hair.

“Uh, what does it look like to you?”

“Okay, sorry I asked. Listen, the coroner’s office called yesterday. The report is complete. Do you want them to fax us a copy?”

“Not really.”

“Don’t you want to know her alleged cause of death?”

“No, I already know—an ear infection. What more do I need to know?”

“We should really follow up with them.” The coffee machine sputtered, signaling the completion of the brewing process. Lena reached for the pot, filled her ceramic mug to the brim, and took a sip. Then she walked down the hall toward her office, with her left hand waving Bryce away.

“I have work to do, Bryce.” The only solace Lena found was in her work—helping others live well in the face of an HIV positive diagnosis.

Ann Tinkham is a writer/instructional designer based in Boulder, Colorado. She has written over 40 online courses in subjects ranging from emergency preparedness to energetic healing. Ann has completed a nonfiction book, Climbing Mountains in Stilettos (SourceBooks, 2007). Her fiction has appeared in Apt, Double Dare Press, Edifice Wrecked, Hiss Quarterly, Lily, MotherVerse, Stone Table Review, Syntax, Thirst for Fire, Toasted Cheese, Wild Violet, and Writethis.com. In addition to writing, Ann has talked her way out of an abduction and talked her way into the halls of the United Nations. She hitchhiked up a mountain in Switzerland and worked her way down the corporate ladder. Ann has flown on a trapeze and traded on the black market in Russia. She cycles up steep canyons, hikes to glacial lakes and mountain peaks, and blazes her own ski trails.

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